Volume 33 Number 1 January/February 2004

VOLUME 33 NUMBER 1 JANUARY/FEBRUARY 2004

EDITORIAL CLINICAL RESEARCH 9 Revisiting Commitment 44 A Model for the HELLP Syndrome: The Maternal Experience Thoughts for the new year on commitment to the nursing profession. Common emotions of women experiencing Nancy K. Lowe HELLP syndrome include fear of death, frustration, anger, and guilt. Maria C. Kidner and Mary Beth Flanders-Stepans PRINCIPLES & PRACTICE 12 Spinal Muscular Atrophy in the 54 Prenatal Predictors of Intimate Partner Neonate Abuse Almost 11% of this sample of pregnant Type I, or Werdnig-Hoffman disease, is the women in Alabama reported physical abuse most common hereditary cause of neonatal during the current pregnancy. mortality and requires expert nursing care for these fragile infants and their families. Linda L. Dunn and Kathryn S. Oths Jennifer A. Markowitz, Mindy B. Tinkle, and Kenneth H. Fischbeck 64 Parents' Perspectives on Decision Making After Antenatal Diagnosis of 21 Calcium in Women: Healthy Bones Congenital Heart Disease and Much More Decisions regarding further testing and preg- A clinical review of the physiology of calcium nancy continuation become the first parenting provides a solid basis for effective bone decisions when a fetus is diagnosed with con- health promotion throughout life. genital heart disease. Jane H. Kass-Wolff Gwen R. Rempel, Loryle M. Cender, M. Judith Lynam, George G. Sandor, and Duncan 34 The Future of Professional Education Farquharson in Natural Family Planning 71 More Than Just Menstrual Cramps: A systematic approach to training health care Symptoms and Uncertainty Among professionals in natural family planning is Women With Endometriosis needed to bring effective counseling to couples. Information seeking and uncertainty may cause significant emotional distress in women Richard J. Fehring with endometriosis. Gail Schoen Lemaire 80 Giving Birth: The Voices of Orthodox 93 Maternal or Fetal Heart Rate? Jewish Women Living in Canada Avoiding Intrapartum Cultural competence is enhanced through an Misidentification understanding of the cultural and spiritual Most labor and delivery nurses assume that meaning of childbirth for Orthodox Jewish the heart rate being recorded on the electronic women. monitor tracing is that of the fetus, but that Sonia E. Semenic, Lynn Clark Callister, and Perle may not always be the case. Feldman Michelle L. Murray

105 VBAC: Safety for the Patient and the SPECIAL REPORTS Nurse 88 Resources for Evidence-Based Vaginal birth after cesarean delivery is an Practice, January/February 2004 evolving area of practice that demands contin- This column reviews resources available to ual nursing vigilance and advocacy for safe support the provision of evidence-based care care. for women and infants. Joan Drukker Dauphinee Carol Sakala 116 Malpractice and the Neonatal Intensive-Care Nurse CLINICAL ISSUES Case examples are used to highlight common Legal Issues in OGN Nursing areas of NICU nursing liability, and steps to avoid errors and maintain the standard of GUEST EDITOR care are discussed. M. Terese Verklan M. Terese Verklan, PhD, CCNS, RNC 124 Liability in the Care of the Elderly 92 Legal Issues Women are the most common victims of sub- A legal consultant and expert NICU nurse standard nursing practice in nursing homes. introduces a series of articles about liability Simple steps can increase safety in the envi- risks that may occur in common obstetric, ronment and the delivery of care. neonatal, and women's health practice scenar- Patricia Iyer ios. M. Terese Verklan 10 LETTERS

132 AUTHOR GUIDELINES

JOGNN is the official journal of AWHONN. A peer-reviewed journal, JOGNN reflects practice, research, policies, opinions, and trends in the care of women, childbearing families, and newborns. JOGNN presents the clinical scholarship that is the driving force behind nursing practice. EDITORIAL

Revisiting Commitment

and a profession, frame our understanding of our Part of beginning a new year is revisiting the com- profession. It can also be used to inform other col- mitments I have made in my life. The interesting leagues in the health care industry, consumers of our thing about human life in the modern developed care, policy makers, legislators, employers, insurers, world is that we have choices about most of our funding organizations, and others about the nature commitments and the opportunity to change them if of professional nursing (ANA, 2003). we choose. I have certain unalterable commitments, For me, one of the most important elements of and these represent the core of my personal life. My ANA’s statement is the definition of nursing. I have commitments to my faith, my husband, my children followed the evolution of the definition of nursing and their spouses, my grandchildren, and other fam- from its historical roots in the writings of Florence ily and friends are in that category. The majority of Nightingale and mid-20th century nurse scholars the rest of my life and activities are based on a com- through ANA’s three definitions in 1980, 1995, and mitment I made many years ago to become a profes- 2003. This new definition is the most comprehensive sional nurse. That commitment is the foundation of and resonates with my own understanding of the all the education, employment, and service that I breadth and depth of our profession: have undertaken since the tender age of 17. Nursing is the protection, promotion, and opti- Whether or not I understood that commitment mization of health and abilities, prevention of ill- when I began my journey in nursing is no longer crit- ness and injury, alleviation of suffering through ical. I have been grateful over the years, however, for the diagnosis and treatment of human response, different experiences that have helped me to review and advocacy in the care of individuals, families, and deepen my understanding of that commitment. communities, and populations. (ANA, 2003, p. 6) Recently, a short publication from the American Nurses Association (ANA), Nursing’s Social Policy I can grasp this definition and find my place as a Statement (2nd ed.) (2003), reminded me again of practitioner, researcher, and educator within it. This my commitment to nursing and all the opportuni- definition and the other parts of ANA’s document ties, joys, and challenges that I have experienced have given me the opportunity to again reflect on since 1967 when RN was affixed to my name. this profession and my personal commitment to it. I What is a social policy statement and why does am proud to be a nurse and a nurse-midwife and am nursing need one? For those of us in the United again amazed at the foresight I had at age 17 to States, ANA’s statement expresses nursing’s social make the commitment to this profession. I am hum- contract with the society we serve. It defines what bled to personally recommit to nursing’s social con- we do in the context of our relationship with socie- tract with the public and am grateful for the oppor- ty at large and our obligation to the recipients of our tunity to do so. care. We practice at the will of the public because society has legally granted us the authority to self- Nancy K. Lowe regulate our practice and ourselves with consider- Editor able autonomy. Whether we are beginning generalist nurses, specialized expert nurses, advanced practice REFERENCE nurses, nurse clinicians, nurse researchers, nurse educators, or nurse administrators, we function American Nurses Association. (2003). Nursing’s under the umbrella of this same professional com- social policy statement (2nd ed.). Washington, DC: mitment and global contract with the public. This Author. succinct document is useful to help us, as individuals

January/February 2004 JOGNN 9 LETTERS

Sjogren’s Syndrome in women. Sometimes health care providers focus only on the common causes and treatments of dry eyes, dry mouth, dry skin, and vaginal dryness, espe- I am so grateful that Schoofs (September/October cially in postmenopausal women. Because SS mimics 2003 JOGNN) brought up the topic of Sjogren’s the symptoms of estrogen deficiency, we owe it to syndrome (SS) in nursing. Believed to be the number our patients to explore the underlying cause of these one autoimmune disorder, SS affects approximately symptoms and refer our patients for appropriate 2 to 4 million Americans, mostly postmenopausal care. For those interested in learning more about SS, women (Carsons & Harris, 1998). Unfortunately, along with the resources in the article by Schoofs little is known about this syndrome. I would like to (2003), I also recommend an excellent book, The share my personal experience with SS. New Sjogren’s Syndrome Handbook, edited by Car- My 76-year-old mother had been complaining of sons and Harris. the signs and symptoms of SS for approximately 10 years. She went to many physicians with the com- Cyndi Roller, WHNP, CNM, PhD plaint of dry eyes, dry mouth, vaginal dryness, dry Kent State University itchy skin, joint pain, fatigue, and malaise, all of Kent, OH which are manifestations of SS (Carsons & Harris, 1998). At first, various care providers recommended many different treatments for the symptoms. My REFERENCES mother was told that her symptoms were age-related Carsons, S., & Harris, E. K. (Eds.). (1998). The new Sjo- and due to decreased estrogen levels. Even after gren’s syndrome handbook. Oxford, UK: Oxford treatment with plugs in her tear ducts, eye drops, University Press. vaginal estrogen, and many dry skin lotions, she still Schoofs, N. (2003). Caring for women living with Sjo- was not feeling well. So she went back to her pri- gren’s syndrome. Journal of Obstetric, Gynecologic, mary physician, who labeled her a “hypochondri- and Neonatal Nursing, 32, 589-593. ac.” His response to my mother’s repeated concern was, “I don’t know what’s wrong with you. What do Preconception Care you think I am, G-d?” One day while reading a national tabloid maga- zine, my mother came across an article on SS. She The Preconception Prenatal Care Committee of the called me and said, “I think this is what I have.” She Wisconsin Association for Perinatal Care asked me went back to her physician, who paid no attention to thank you for the excellent coverage on precon- to her complaint, although her dermatologist did. ception care (July/August 2003 JOGNN). Members The dermatologist proceeded with testing that led to were particularly pleased with the emphasis on the diagnosis of SS. Since the diagnosis, my mother, genetic counseling. although not completely relieved of her symptoms This multidisciplinary committee has a long his- due to other medical conditions, changed care tory of commitment to preconception care, empha- providers, to a rheumatologist who specializes in SS. sizing the many avenues for service delivery in addi- My mother is relieved to know she is not a tion to routine OB/GYN visits. The articles in hypochondriac and that she has a care provider who JOGNN give more support to the committee’s work knows about SS and is caring and compassionate. and provide new and vital information to those who As women’s health care providers, we must believe in and practice preconception counseling. demonstrate our care for our patients by becoming On behalf of I. Mary Anderson, chair, and the rest familiar with the signs and symptoms of SS, espe- of the Preconception Prenatal Care Committee, we cially because the syndrome occurs most frequently congratulate you on such excellent coverage of an

10 JOGNN Volume 33, Number 1 important topic. Many of us are faithful JOGNN readers, required to educate nurses will certainly allow hospitals and because of the coverage on preconception care, we to prepare for this necessary training. have introduced the journal to several others. In the article, it was noted that the cost for each participant to complete the 12-hour didactic component and Rana Limbo, PhD, RN, CS for the sonographer educator to teach it totaled approxi- Wisconsin Association for Perinatal Care mately $882 per learner. As stated in the article, this cost Madison, WI may be reduced by teaching group sessions rather than one-on-one. Limited Obstetric Ultrasound Examinations For institutions that cannot offer an in-house sonography didactic educational component, the 12-hour didactic portion can be completed online through Health Edu- I commend the authors as well as the journal for pub- cation Innovations, Inc. (http://www.hei-online.com). The lishing the clinical research study “Limited Obstetric cost for this course is approximately $250 per nurse and Ultrasound Examinations: Competency and Cost” can be completed on a flexible time basis. There are also (May/June 2003 JOGNN). The study was well done and limited obstetric sonography courses offered on a nation- the information very applicable to hospital educational al basis throughout the year. programs and nursing clinical practice. Unfortunately, too Again, congratulations on a study well done. many nurses continue to accept the responsibility for performing limited ultrasound examinations without having completed the recommended didactic component and Cydney Afriat Menihan, CNM, MSN, RDMS clinical skills competency experience. Knowing the cost Narragansett, RI

January/February 2004 JOGNN 11 PRINCIPLES & PRACTICE

Spinal Muscular Atrophy in the Neonate Jennifer A. Markowitz, Mindy B. Tinkle, and Kenneth H. Fischbeck

Spinal muscular atrophy (SMA) type I is an sistent with respiratory muscle weakness. He was autosomal recessive disorder characterized by loss of transferred to a local tertiary care center and in tran- lower motor neurons in the spinal cord. This severe sit required intubation. Over the next 2 weeks, his hereditary neurodegenerative disorder is an impor- breathing improved with respiratory therapy; at one tant cause of morbidity in the neonate and the leading point, he was weaned from the ventilator and hereditary cause of infant mortality. The characteristic switched to nasal continuous positive airway pres- degeneration of anterior horn cells in the spinal cord sure (CPAP). He had a bright and alert disposition. leads to progressive muscular weakness and atrophy His suck was weak, his tongue appeared tremulous, of the skeletal muscles. In SMA type I, the most severe and he required nasogastric feeding. Geneticists and form of SMA, death usually ensues by 2 years of age neurologists evaluated the patient; after electromyo- from respiratory failure or infection. Accurate diagno- graphy, muscle biopsy, and a blood sample for DNA sis is now available through genetic testing, and testing, he was diagnosed as having spinal muscular progress is being made toward the development of atrophy, type I. Although he appeared to improve, at therapy based on understanding of the disease mech- 23 days he developed pneumonia and could not be anism. The neonatal nurse plays a pivotal role in iden- resuscitated. tifying and caring for these medically fragile infants The underlying cause of this infant’s neuromuscu- and in providing support and education for parents lar disorder, spinal muscular atrophy (SMA), is dele- and families. JOGNN, 33, 12-20; 2004. DOI: tion of a segment of DNA on chromosome 5. SMA 10.1177/0884217503261125 is characterized by progressive weakness and hypo- Keywords: End of life care—Genetic disorders tonia resulting from degeneration of the lower in the neonate—Spinal muscular atrophy motor neurons in the spinal cord. It is the most common hereditary cause of infant mortality, with an Accepted: March 2003 incidence estimated at 1 in 10,000 (Nicole, Diaz, Frugier, & Melki, 2002; Ogino, Leonard, Rennert, A 27-year-old woman (gravida 1, para 0) had an Ewens, & Wilson, 2002) and a worldwide carrier uneventful pregnancy until she noticed decreased frequency of between 1 in 50 and 1 in 200 (Coovert fetal movement at 32 weeks. Her fetus was small for et al., 1997; Cusco et al., 2002; Emery, 1991; Wirth gestational age. Stress tests were inconclusive, and et al., 1999). The disease is classified according to there were no maternal serum or ultrasound abnor- age of onset, severity of symptoms, and life malities. Labor was induced at 38 weeks, and the expectancy. Type I SMA, or Werdnig-Hoffmann dis- delivery was complicated by a nuchal cord. The ease, is defined by onset of symptoms before 6 infant took several seconds to begin breathing fol- months of age, with inability to sit, and survival is lowing clamping of the cord, after which he was usually less than 2 years. Type II or intermediate admitted to the neonatal intensive-care unit (NICU), SMA is characterized by onset before age 18 where he received oxygen. The NICU staff noted months; these patients are able to sit but not walk, that he was floppy and had a chest deformity con- and with appropriate supportive care may survive

12 JOGNN Volume 33, Number 1 into adulthood. Type III SMA, or Kugelberg Welander a restrictive lung deficit. A bell-shaped deformity of the disease, is the least severe clinically, with ability to walk chest is typical. Affected infants have truncal and limb and onset in childhood or adolescence; these patients may hypotonia and are profoundly weak, with the proximal have a normal life expectancy (Nicole et al., 2002; muscles affected more than distal, and legs affected more Schmalbruch & Hasse, 2001; Volpe, 2000). As shown in than arms (see Figure 2). A neonate presenting with SMA Table 1, SMA is one in a spectrum of muscle and nerve may have little voluntary movement of the extremities, disorders that affect infants and young children. even in the fingers and toes. In severe cases, infants with This overview focuses on the most severe form of SMA may be born with arthrogryposis multiplex con- SMA, type I, which may present in the neonatal period genita, in which the extremities are deformed by congen- and pose diagnostic, ethical, and management challenges ital joint contractures (Bingham et al., 1997; Falsaperla et to the neonatal nurse. The clinical and genetic features of al., 2001). This condition has multiple causes other than this disease are discussed, followed by current approach- SMA, all of which produce decreased fetal movement. es to management and promising strategies for therapeu- In contrast to the extremities, the muscles of facial tic development. expression are relatively spared. Indeed, these infants typically appear bright and alert. However, weakness does Clinical Features of Spinal Muscular Atrophy affect the tongue and the facial muscles involved in feeding. Tongue twitching (fasciculation) is a common sign at SMA was first described in the 1890s by Guido Werd- diagnosis, as is a poor suck. Such infants are at high risk nig of the University of Vienna and Johann Hoffmann of for failure to thrive, in which case tube feedings may be Heidelberg University. Their papers presented the clinical considered (Crawford, 2002). and pathological aspects of infantile SMA, including early Severely affected infants have persistent head lag and onset, occurrence among siblings of normal parents, pro- are never able to sit. Prognosis is very poor, and newborns gressive weakness, hand tremor, and death from respira- who present with SMA at birth may survive only 1 tory failure in early childhood (as cited in Iannaccone, month, succumbing to respiratory infection or aspiration. 1998). Since the syndrome was first described, there has Infants presenting later, but before 6 months, generally been debate about how to categorize different forms of live between 1 and 2 years (DeVriendt et al., 1996; Volpe, SMA. The current nomenclature of SMA types I, II, and 2000). This poor outcome points to the difficult ethical III was developed by international consensus (Munsat & decisions that can arise regarding supportive and life- Davies, 1992) and continues to provide clinical utility, extending care for these children. Other end-of-life issues although the boundaries between these SMA types are such as psychosocial needs of parents and siblings, coor- arbitrary and the disease actually has a continuous range dination of care, availability of support services, and of clinical severity. bereavement are all integral to caring for these newborns The cardinal symptom of all forms of SMA is weak- and their families. ness. The weakness is due to loss of motor neurons in the anterior horn of the spinal cord (see Figure 1). When the Genetics of SMA motor neurons are lost, the skeletal muscles that they innervate become weakened and atrophy. Severely dener- SMA results from deletions and other mutations affect- vated muscles may preserve a few residual motor units ing the “survival motor neuron” (SMN1) gene on chro- (consisting of individual motor neurons and the muscle mosome 5. It is an autosomal recessive condition, and in fibers they innervate). The remaining motor units may fire most cases, affected individuals have inherited a gene off sporadically to produce twitching (fasciculation) par- deletion from each parent. Therefore, most SMA patients ticularly of the tongue and fingers, a finding often used in are homozygous for SMN1 deletions. The parents each diagnosis. Although SMA patients have profound motor have one normal (or wild type) copy of the gene and one deficits, sensation usually remains intact (Crawford, mutant copy. Although they carry the mutation, they are 2002). clinically normal. With every pregnancy, there is a 25% Type I SMA usually presents at birth or in early infan- chance that the child will inherit both copies of the cy. Mothers of infants affected with SMA type I often mutant gene and be affected with SMA, a 50% chance the report a decrease in fetal movements during the 3rd child will inherit one copy of the mutant gene and one trimester, which indicates that the process of motor neu- normal copy (making him or her a heterozygous carrier), ron loss may begin in utero (Fidzianska & Rafalowska, and a 25% chance that the child will inherit two normal 2002; MacLeod, Taylor, Lunt, Mathew, & Robb, 1999). copies of the gene. Approximately 1 in 50 to 1 in 200 peo- At birth, the newborn with SMA may require ventilatory ple worldwide carry a mutation of the SMN1 gene. support. Although diaphragmatic strength is generally Because the disease is autosomal recessive, there is usual- intact, intercostal weakness can be prominent, resulting in ly no prior family history of SMA.

January/February 2004 JOGNN 13 TABLE 1 Inherited Progressive Nerve and Muscle Disorders Affecting Infants and Children

Mode of Type Age at Onset Inheritance Clinical Features Progression I. Motor Neuron Disorders Spinal Muscular Before birth to Autosomal Generalized muscle Progresses rapidly; Atrophy Type 1 6 months recessive weakness, no independent death usually by age 2 sitting

Spinal Muscular 6 to 18 months Autosomal Muscle weakness but many Variable; most survive Atrophy Type 2 recessive sit independently to 2nd or 3rd decade

Spinal Muscular Childhood to Autosomal Some muscle weakness, Slow progression with Atrophy Type 3 adolescence recessive but most ambulate normal lifespan independently

II. Muscle Disorders Duchenne’s Muscular Early childhood. X-linked Generalized muscle weakness Slow progression; Dystrophy 2 to 6 years recessive and wasting of proximal survival rare beyond (Females are muscles; pseudohypertrophy late 20s carriers) of calf muscles

Becker Muscular Adolescence or X-linked Similar to Duchenne’s Variable; survival mid Dystrophy young adulthood recessive but much less severe to late adulthood. (Females are carriers)

Myotonic Dystrophy Childhood to Autosomal Myotonia, muscle wasting Slow progression in middle age; dominant of face, feet and hands adult form; fatal in Congenital form first; Congenital form about half of infants present at birth particularly severe with congenital form

III. Neuromuscular Junction Disorders Congenital Myasthenic Birth to childhood Autosomal Muscle weakness, often in Variable; weakness Syndromes recessive muscles of eyes and face, can fluctuate and general fatigue; more severe symptoms with onset in infancy IV. Peripheral Nerve Disorders Charcot-Marie-Tooth Childhood to Autosomal Progressive muscle weakness; Slow but variable Disease (Type 1A) young adulthood dominant muscle wasting in the progression; normal hands and legs and mild lifespan sensory impairment; hyporeflexia

The genetics of SMA are somewhat more complex protein and is deleted in 95% of SMA patients. The dele- than other autosomal recessive diseases. The SMN1 gene tion usually involves two important portions of the gene, is normally present in two copies on chromosome 5, exons 7 and 8, with the result that no SMN protein is pro- arranged as an inverted duplication (see Figure 3). One duced (Battaglia, Princivalle, Forti, Lizier, & Zeviani, copy, SMN1, is closer to the telomeric end of the chro- 1997; Burglen et al., 1996). The other copy, SMN2, is mosome; this produces the majority of functional SMN closer to the centromere of the chromosome. It differs

14 JOGNN Volume 33, Number 1 Spinal Cord Chromosome 5 Muscle fiber

Spinal motor neuron

centromere SMN2 Nerve fiber SMN SMN1 degenerates in SMA

FIGURE 1 Motor neurons in the anterior horn of the spinal cord degener- telomere ate in spinal muscular atrophy. FIGURE 3 The SMN gene is normally present in two copies, SMN1 and SMN2, on chromosome 5.

consistently by only one nucleotide from SMN1, but this alters the way the RNA is processed or “spliced,” so that only a small proportion of its product is full-length, functional SMN protein (Lorson, Hahnen, Androphy, & Wirth, 1999). Thus, patients with SMA must rely on the smaller amount of SMN protein that the SMN2 gene can produce (Lorson & Androphy, 2000). Importantly, there is variability in the number of copies of SMN2 in the normal population, and some individuals have more than one copy of this gene on chromosome 5. Because the level of SMN protein is inversely correlated with severity of disease, patients with more copies of SMN2 are less severely affected (Brahe, 2000). The SMN protein is relatively abundant in all cells, with the highest levels in the brain, spinal cord, and kidney (Burlet et al., 1998; Coovert et al., 1997). It plays a role in the assembly of macromolecular complexes called spliceosomes, which are responsible for mRNA processing (Pellizzoni, Kataoka, Charroux, & Dreyfuss, 1998; Terns & Terns, 2001). Animal studies have shown that minimal levels of the SMN protein are required for survival; complete disruption of the SMN gene is embryonic lethal in mice (Hsieh-Li et al., 2000; Monani et al., 2000). In humans, SMN2 appears to be required for the survival of a fetus once the SMN1 gene is lost (Crawford, 2002). However, it is not known why low levels of SMN are particularly deleterious to motor neurons.

FIGURE 2 Diagnosis Infant with spinal muscular atrophy, exhibiting hypotomia and head lag. Note. From Medical Disorders in Children by V. Dubowitz, Diagnosing an Affected Newborn 1978, p. 150. W.B. Sanders, Philadelphia. Reprinted with permission. When there are clinical grounds for suspecting a diagnosis of SMA in a newborn, confirmation can be made by

January/February 2004 JOGNN 15 decreased number of functioning lower motor neurons. An infant with SMA will have EMG findings indicative of SMN1 denervation, whereas nerve conduction studies may show decreased motor amplitude. Sensory amplitude is normal in most affected infants, but severely affected newborns SMN2 may have sensory abnormalities. Muscle biopsy may be nondiagnostic early in the disease, although infants with Control SMA Carrier severe weakness exhibit features of denervation, with (2 SMN1) (0 SMN1) (1 SMN1) many small muscle fibers (Crawford, 2002).

1 2 3 Carrier Testing and Prenatal Diagnosis DNA-based tests may be of value to family members of FIGURE 4 an affected child, as the quantitative SMN1 deletion test Spinal muscular atrophy mutation analysis by PCR. The con- can be used to determine if relatives are carrying this dele- trol PCR represents an unaffected individual who has 2 nor- tion (Cusco et al., 2002). However, there are limitations mal copies of SMN1 (homozygous wildtype). Patient 2 demon- to carrier testing. For example, about 4% of people have strates homozygous deletions of SMN1 and is therefore two or more copies of SMN1 on the same chromosome affected with SMA. Patient 3 has only one copy of SMN1 (note the reduced PCR reaction or SMN1 "dosage") and is a (Wirth, 2000). A person carrying the SMN1 gene deletion carrier (a heterozyote). on one chromosome, but two SMN1 genes on the other, might be falsely reassured by the quantitative test, in that a DNA-based test for the homozygous SMN1 exon 7 the test cannot detect whether the two SMN1 copies are deletion (Scheffer, Cobben, Matthijs, & Wirth, 2001). on the same or different chromosomes. Whereas current Polymerase chain reaction (PCR) technique is used to clinically accessible testing methods have limitations, amplify the DNA of exon 7 from both the SMN1 and newer PCR techniques now under investigation may SMN2 genes. The PCR products are then digested with a eventually allow SMA carrier screening for the general restriction enzyme (i.e., an enzyme that cuts DNA at spe- population (Falsaperla et al., 2001; Feldkotter, Schwarzer, cific sites). Because of the difference in the base sequences Wirth, Wienker, & Wirth, 2002; Semprini et al., 2001). of the two SMN genes, the enzyme cuts the SMN2 PCR In addition to its use in carrier detection, the available product into two pieces but does not cut the SMN1 PCR genetic test may be applied to prenatal diagnosis. This is product. The digested PCR products are then separated done by directly testing the fetal DNA obtained from by size on a DNA electrophoresis gel and examined (see chorionic villus sampling or amniocentesis samples for Figure 4). Intact SMN1 PCR product is absent in 95% of homozygous SMN1 deletion (Milunsky & Cheney, individuals with SMA, and this is diagnostic for the dis- 1999). Most couples currently seeking prenatal diagnosis ease. The test is rapid, reliable, and relatively inexpensive, for SMA have had a child or other family member affect- and it makes more invasive and painful procedures, such ed by the disease. Identification of a homozygous deletion as muscle biopsy, unnecessary. in an affected family member further increases the predic- Approximately 5% of individuals with SMA do not tive value of the fetal DNA test. If there is a nondeletion have homozygous SMN1 deletions and will thus be mutation in the family, other testing methods may be missed by the test described above. Nearly all of these required for assessing the fetus’s risk of SMA. In either affected individuals (95% to 96%) are compound het- case, if chorionic villus sampling is the method chosen to erozygotes, having an SMN1 deletion on one chromo- acquire fetal cells, the possibility of maternal cell contam- some and a point mutation or other nondeletion mutation ination must always be considered when interpreting the on the other chromosome 5 (Scheffer et al., 2001). Quan- test results. titative PCR analysis of SMN1 exon 7 can be used in Although prenatal diagnosis is offered most often in these cases to determine whether the patient has one copy the context of a positive family history for SMA, it may of SMN1 exon 7; if so, mutation analysis for one of the be appropriate in other instances. There are limited data 23 different known mutations can be performed (Wirth, indicating that subtle findings may be evident prenatally 2000). As many as 2% of individuals with SMA have a de in severe cases of SMA type I. In addition to maternal novo mutation; that is, they have a new SMN1 mutation reports of decreased fetal movements, Stiller et al. (1999) that is not detectable in samples from the parents (Wirth stated that ultrasound examination findings may be sug- et al., 1997). gestive as early as 10 to 14 weeks gestation. These Other diagnostic studies may include electromyogra- researchers presented a case of increased nuchal translu- phy (EMG), nerve conduction studies, and muscle biopsy. cency in a fetus, later diagnosed with SMA at birth, and These studies show abnormalities consistent with the they pointed to five other cases in the literature in which

16 JOGNN Volume 33, Number 1 infants born with severe SMA exhibited this ultrasound TABLE 2 finding. Although increased nuchal translucency is not Resources for Families and Health Care Providers specific for SMA, it was suggested that following an analysis in which chromosomes are found to be normal, SMA testing may be of value, in addition to targeted Families of Spinal P.O. Box 196 ultrasound and fetal echocardiography. Muscular Atrophy Libertyville, IL 60048-0196 DNA-based testing may also extend to other reproduc- (800) 886-1762 tive options for couples at risk for transmitting SMA, Fax (847)367-7623 including preimplantation genetic diagnosis (PGD) or www.fsma.org donor gamete carrier screening (Jones & Fallon, 2001). In PGD, in which the assisted reproductive technique of in Andrew’s Buddies P.O. Box 785 vitro fertilization is used, DNA testing is performed on Richmond, VA 23218-0758 cells of the embryo at the five- to eight-cell stage and only (804) 698-8839 nonaffected embryos are used for transfer. This approach Fax (804) 698-8802 has been found to be highly accurate in several recent www.andrewsbuddies.com studies (Daniels et al., 2001; Dreesen et al., 1998).

Genetic Alliance, Inc. 4301 Connecticut Ave., NW, Management and Therapeutics Suite 404 Washington, DC 20008-2304 Management Issues (202) 966-5557 There is no cure for spinal muscular atrophy; current Fax (202) 96608553 treatment is supportive. Infants with SMA require inten- www.geneticalliance.org sive supportive care to manage secretions and atelectasis because they are at high risk of aspiration and respirato- Muscular Dystrophy 3300 East Sunrise Drive ry failure. Infants with SMA often develop feeding prob- Association-USA Tucson, AZ 85718 lems due to a weak suck; gastrostomy tube placement (800) 572-1717 may be necessary to maintain nutrition. Hypokinesia www.mdausa.org necessitates frequent turning and careful positioning to minimize skin breakdown and development of contrac- Online Mendelian www.ncbi.nlm.nih.gov tures. Families with an affected infant need emotional Inheritance in Man entry # 253300 support as they cope with the child’s illness and face difficult decisions about the infant’s care. (OMIM) The prognosis is poor for neonates with SMA type I; 75% die by the age of 1 year, 95% by age 2. There is a Gene Reviews www.geneclinics.org tendency for the weakness to stabilize over time, but for the affected neonate this may mean stabilization in a state NCBI Genes and www.ncbi.nlm.nih.gov/disease/ Disease Web page SMA.html

infant’s quality of life and the high burden of care must be Investigations of promising treatments considered, as well as the ethical values and needs of the are aimed at finding drugs that increase the family. Such decisions require a sensitive and often deli- cate collaboration between families, neonatal nurses, expression of SMN2, a gene that remains intact social workers, physicians, and others. in spinal muscular atrophy. In the NICU, the neonatal nurse plays a key role in integrating the family into the care of the neonate with SMA. Assessment of the family members’ needs and resources is critical to providing supportive care. Families of profound limb weakness with severe impairment of require accurate and specific medical and genetic infor- intercostal and bulbar strength (Crawford, 2002). Fami- mation about their infant’s condition. The nurse must be lies with an affected neonate and the caregivers may need prepared with knowledge about this genetic condition to make difficult ethical decisions regarding prolongation and community resources to participate fully in the edu- of life with ventilation and tube feeding. Issues such as the cation process. Table 2 provides a list of information and

January/February 2004 JOGNN 17 such as SMA and their families. In general, there are few studies to inform care for this population, and what is known is largely anecdotal. A recent Institute of Medicine Mutations are responsible for spinal report highlighted recommendations to improve this care, muscular atrophy, and accurate genetic testing including directions for future research (Field, Behrman, & Committee on Palliative and End-of-Life Care for Chil- for this condition is now available. dren and Their Families, Institute of Medicine, 2003). The National Institute of Nursing Research is the lead Institute at the National Institutes of Health for the end- of-life science area and periodically announces initiatives support resources related to SMA that may be appropri- to stimulate nursing research on this very important and ate for health care professionals and family members. understudied topic. The genetic nature of SMA may impose several unique Clearly, preconceptional or antenatal identification of challenges for families. Because SMA is an autosomal couples at risk for having an infant who is affected with recessive disease, families may have faced the death of one SMA would be ideal. However, there are few specific risk child from SMA and now face another. In addition, par- factors that make this identification possible. Because ents of an infant with a genetic disorder such as SMA may SMA is an autosomal recessive disorder, a positive family experience ostracism from their families, who may not history of this condition is usually not present. If more want to acknowledge that this disease could happen to than one member of a family is affected with SMA, it is them (Knebel & Hudgings, 2002). Parents may experi- most often seen only in the sibship of the affected indi- ence feelings of guilt, shame, and remorse at the possibil- vidual, not in the parents, or other relatives. However, ity of having passed on a life-threatening disease. They nurses providing prenatal care to families should take a also may have concerns about future reproductive deci- careful family history and refer couples for genetic coun- sions. An interdisciplinary team approach is essential to seling in the presence of a positive family history for SMA help with the complex array of physical, psychosocial, or a history of recurrent, spontaneous abortion or still- spiritual, and cognitive needs these families may face. birth. Many infants affected with SMA type I will leave the Other antenatal factors, such as sonographic evidence NICU for home care, and discharge planning is an essen- of increased nuchal translucency or maternal reports of tial nursing role. The following are all important elements decreased fetal movements, have been described recently, in this planning process: assuring coordination and conti- and SMA should be considered in the differential diagno- nuity of care in the home, including equipment require- sis. However, these findings are fairly nonspecific, and it ments; providing education and skills training to parents is more likely that SMA will be first recognized in the and other family members; exploring development of neonatal period. Nurses can play an important role in advanced directives with the family; referring families, reassuring couples with an affected infant that this out- including siblings, to support groups and advocacy organ- come was not due to anything that they did or should izations; and linking families with respite and bereave- have known to look for during the pregnancy. ment care and genetic services. A study of 13 families with an infant or child with Approaches to Treatment Duchenne’s muscular dystrophy or spinal muscular atro- Efforts are currently under way to develop treatment phy validated the importance of a comprehensive dis- for SMA. Although this disease may someday be a candi- charge plan (Parker, Maddocks, & Stern, 1999). Families date for gene therapy or stem cell treatment, such reported concerns over lack of continuity of care and dif- approaches remain far in the future. An approach that ficulties in finding trained, experienced caregivers in the may prove fruitful sooner is the search for drugs that home setting. Parents accessed support groups not only increase the expression of SMN2, the gene that remains for emotional support but also to learn practical informa- intact in SMA. Current studies are aimed at finding agents tion about how to manage symptoms or medical equip- that either correct the splicing of this gene, so that a ment. Siblings of the ill infant or child also need attention greater proportion of full-length mRNA is produced, or and often expressed their grief by acting out in school or increase the overall expression of the gene so that more having other behavioral or performance problems. Fami- SMN protein is made. Aclarubicin is an example of a lies also benefited from bereavement care but expressed drug currently under investigation that has been shown to the importance of having a sustained relationship with a correct the splicing of transcripts from the SMN2 gene professional over time, such as working with a social and increase the levels of functional SMN protein worker who knew the family and had rapport with them. (Andreassi et al., 2001). Other such agents have also The need is great for nursing research to help guide the shown promise (Chang et al., 2001), and future clinical care of dying infants and young children with conditions trials of these and other treatments are likely.

18 JOGNN Volume 33, Number 1 Burlet, P., Huber, C., Bertrandy, S., Ludosky, M. A., Zwaenepoel, I., Clermont, O., et al. (1998). The distribu- he neonatal nurse plays a critical role in tion of SMN protein complex in human fetal tissues and T its alteration in spinal muscular atrophy. Human Molecu- integrating the family in the care of the lar Genetics, 7, 1927-1933. Chang, J. G., Hsieh-Li, H., Jong, Y. J., Wang, N., Tsai, C. H., & neonate with spinal muscular atrophy. Li, H. (2001). Treatment of spinal muscular atrophy by sodium butyrate. Proceedings of the National Academy of Sciences, 98, 9808-9813. Coovert, D., Le, T., McAndrew, P., Strasswimmer, J., Crawford, Another pharmacologic approach to this disease is T., Mendell, J., et al. (1997). The survival motor neuron treatment with neuroprotective or neurotrophic agents protein in spinal muscular atrophy. Human Molecular that could compensate for SMN deficiency and protect Genetics, 6, 1205-1214. the lower motor neurons from degeneration. A recent Crawford, T. O. (2002). Spinal muscular atrophy. In H. R. trial of gabapentin, a drug that may protect neurons by Jones, D. C. DeVivo, & B. T. Darras (Eds.), Neuromuscu- blocking the production of glutamate, showed no benefit lar disorders of infancy and childhood, a clinician’s in SMA patients (Miller et al., 2001), but investigators approach. Woburn, MA: Butterworth Heinemann. remain interested in exploring the potential of similar Cusco, I., Barcelo, M. J., Soler, C., Parra, J., Baiget, M., & Tiz- agents for treatment. zano, E. (2002). Prenatal diagnosis for risk of spinal muscular atrophy. British Journal of Genetics, 109(11), 1244- 1249. Conclusion Daniels, G., Pettigrew, R., Thornhill, A., Abbs, S., Lashwood, A., O’Mahoney, F., et al. (2001). Molecular Human Spinal muscular atrophy, the most common hereditary Reproduction, 7, 995-1000. cause of infant mortality, is a potentially life-threatening DeVriendt, K., Lammens, M., Schollen, E., Van Hole, C., Dom, disease that can present in the newborn. Neonatal nurses R., Devlieger, H., et al. (1996). Clinical and molecular who are familiar with this condition and its ramifications genetic features of congenital spinal muscular atrophy. can be invaluable in helping patients, families, and the Annals of Neurology, 40, 731-738. rest of the health care team. Although there is currently Dreesen, J. C., Bras, M., de Die-Smulders, C., Dumoulin, J. C., no cure, good supportive care and therapeutic agents cur- Cobben, J. M., Evers, J. L., et al. (1998). Preimplantation rently under investigation may enhance these infants’ genetic diagnosis of spinal muscular atrophy. Molecular chance of survival. The neonatal nurse plays a vital role Human Reproduction, 4, 881-885. not only in medical management of patients with SMA Emery, A. E. H. (1991). Population frequencies of inherited neuromuscular diseases—A world survey. Neuromuscular but also in support and education of families as they Disorders, 1, 19-29. encounter the issues of disease genetics, diagnosis, and Falsaperla, R., Romeo, G., Di Giorgio, A., Pavone, P., Parano, end-of-life care. E., & Connolly, A. M. (2001). Long-term survival in a child with arthrogryposis multiplex congenita and spinal Journal of Child Neurology 16 REFERENCES muscular atrophy. , , 934- 935. Andreassi, C., Jarecki, J., Zhou, J., Coovert, D. D., Monani, Feldkotter, M., Schwarzer, V., Wirth, R., Wienker, T. F., & U.R., Chen, X., et al. (2001). Aclarubicin treatment Wirth, B. (2002). Quantitative analyses of SMN1 and restores SMN levels to cells derived from type I spinal SMN2 based on real-time LightCycler PCR: Fast and muscular atrophy patients. Human Molecular Genetics, highly reliable carrier testing and prediction of severity of 10, 2841-2849. spinal muscular atrophy. American Journal of Human Battaglia G., Princivalle, A., Forti, F., Lizier, C., & Zeviani, M. Genetics, 70, 358-368. (1997). Expression of the SMN gene, the spinal muscular Fidzianska, A., & Rafalowska, J. (2002). Motoneuron death in atrophy determining gene, in the mammalian central nerv- normal and spinal muscular atrophy-affected human ous system. Human Molecular Genetics, 6, 1961-1971. fetuses. Acta Neuropathologica (Berlin), 104(4), 363-368. Bingham, P., Shen, N., Rennert, H., Rorke, L. B., Black, A.W., Field, M. J., Behrmen, R. E., & Committee on Palliative and Padilla, M., et al. (1997). Arthrogryposis due to infantile End-of-Life Care for Children and Their Families, Insti- neuronal degeneration associated with deletion of the tute of Medicine. (2003). When children die: Improving SMNT gene. Neurology, 49, 848-851. palliative and end-of-life care for children and their fami- Brahe, C. (2000). Copies of the survival motor neuron gene in lies. Washington, DC: National Academy Press. spinal muscular atrophy: The more, the better. Neuro- Hsieh-Li, H. M., Chang, J. G., Jong, Y. I., Wu, M. H., Wang, N., muscular Disorders, 10, 274-275. Tsai, C. H., et al. (2000). A mouse model for spinal mus- Burglen, L., Lefebvre, S., Clermont, O., Burlet, P., Viollet, L., cular atrophy. Nature Genetics, 24, 66-70. Cruaud, C., et al. (1996). Structure and organization of Iannaccone, S. T. (1998). Spinal muscular atrophy. Seminars in the human survival motor neurone (SMN) gene. Neurology, 18, 19-26. Genomics, 32, 479-482.

January/February 2004 JOGNN 19 Jones, S. L., & Fallon, L. A. (2001). Reproductive options for Schmalbruch, H., & Hasse, G. (2001). Spinal muscular atrophy: individuals at risk for transmission of a genetic disorder. Present state. Brain Pathology, 11, 231-247. Journal of Obstetric, Gynecologic, and Neonatal Nurs- Semprini, S., Tacconelli, A., Capon, F., Brancati, F., Dallapicco- ing, 31, 193-199. la, B., & Novelli, G. (2001). A single strand conforma- Knebel, A., & Hudgings, C. (2002). End-of-life issues in genetic tional polymorphism-based carrier test for spinal muscu- disorders: Literature and research directions. Genetics in lar atrophy. Genetic Testing, 5, 33-37. Medicine, 4, 366-372. Terns, M., & Terns, R. M. (2001). Macromolecular complexes: Lorson, C., & Androphy, E. (2000). An exonic enhancer is SMN—The master assembler. Current Biology, 11, 862- required for inclusion of an essential exon in the spinal 864. muscular atrophy-defining gene SMN. Human Molecular Stiller, R. J., Lieberson, D., Herzlinger, R., Siddiqui, D., Laifer, Genetics, 9, 259-265. S. A., & Whetham, C. G. (1999). The association of Lorson, C., Hahnen, E., Androphy, E., & Wirth, B. (1999). A increased fetal nuchal translucency and spinal muscular single nucleotide in the SMN gene regulates splicing and atrophy type I. Prenatal Diagnosis, 19, 587-589. is responsible for spinal muscular atrophy. Proceedings of Volpe, J. (2000). Neurology of the newborn (4th ed.). Philadel- the National Academy of Sciences, 96, 6307-6311. phia: W. B. Saunders. MacLeod, M. J., Taylor, J. E., Lunt, P. W., Mathew, C. G., & Wirth, B. (2000). An update of the mutation spectrum of the Robb, S. A. (1999). Prenatal onset spinal muscular atro- survival motor neuron gene (SMN1) in autosomal spinal phy. European Journal of Paediatric Neurology, 3(2), 65- muscular atrophy (SMA). Human Mutation, 15, 228-237. 72. Wirth, B., Herz, M., Wetter, A., Moskau, S., Hahnen, E., Rud- Miller, R. G., Moore, D. H., Dronsky, V., Bradley, W., Barohn, nik-Schoneborn, S., et al. (1999). Quantitative analysis of R., Bryan, W., et al. (2001). A placebo-controlled trial of survival motor neuron copies: Identification of subtle gabapeutin in spinal muscular atrophy. Journal of the SMN1 mutations in patients with spinal muscular atro- Neurological Sciences, 191, 127-131. phy, genotype-phenotype correlation, and implications for Milunsky, J. M., & Cheney, S. M. (1999). Prenatal diagnosis of genetic counseling. American Journal of Human Genetics, spinal muscular atrophy by direct molecular analysis: Effi- 64, 1340-1356. cacy and potential pitfalls. Genetic Testing, 3, 255-258. Wirth, B., Schmidt, T., Hahnen, E., Rudnik-Schoneborn, S., Monani, U., Sendtner, M., Coovert, D., Parsons, D. W., Krawczak, M., Muller-Myhosk, B., et al. (1997). De novo Andreassi, C., Le, T., et al. (2000). The human cen- rearrangements found in 2% of index patients with spinal tromeric survival motor neuron gene (SMN2) rescues muscular atrophy: Mutational mechanisms, parental ori- embryonic lethality in Smn (-/-) mice and results in a gins, mutation rate, and implications for genetic counsel- mouse with spinal muscular atrophy. Human Molecular ing. American Journal of Human Genetics, 61, 1102- Genetics, 9, 333-339. 1111. Munsat, T., & Davies, K. (1992). International SMA consor- tium meeting (26-28 June 1992, Bonn, Germany). Neuro- muscular Disorders, 2, 423-428. Jennifer A. Markowitz, MD, was a fellow in the Clinical Nicole, S., Diaz, C. C., Frugier, T., & Melki, J. (2002). Spinal Research Training Program, National Institute of Neurological muscular atrophy: Recent advances and future prospects. Diseases and Stroke, Neurogenetics Branch, National Institutes Muscle & Nerve, 26(1), 4-13. of Health, Bethesda, MD, at the time this article was written. Ogino, S., Leonard, D. G. B., Rennert, H., Ewens, W. J., & Wil- Currently, she is a resident in pediatrics at the Children’s Hos- son, R. B. (2002). Genetic risk assessment in carrier test- pital of Philadelphia, Philadelphia, PA. ing for spinal muscular atrophy. American Journal of Medical Genetics, 110(4), 301-307. Parker, D., Maddocks, I., & Stern, L. M. (1999). The role of pal- Mindy B. Tinkle, PhD, RN, is intramural program director for liative care in advanced muscular dystrophy and spinal research and training, National Institute of Nursing Research, muscular atrophy. Journal of Paediatric Child Health, 35, National Institutes of Health, Bethesda, MD. 245-250. Pellizzoni, L., Kataoka, N., Charroux, B., & Dreyfuss, G. A. Kenneth H. Fischbeck, MD, is chief, Neurogenetics Branch, (1998). Novel function for SMN, the spinal muscular National Institute of Neurological Diseases and Stroke, atrophy disease gene product, in pre-mRNA splicing. Cell, National Institutes of Health, Bethesda, MD. 95, 615-624. Scheffer, H., Cobben, J. M., Matthijs, G., & Wirth, B. (2001). Address for correspondence: Mindy B. Tinkle, PhD, RN, Intra- Best practice guidelines for molecular analysis in spinal mural Program Director for Research and Training, National muscular atrophy. European Journal of Human Genetics, Institute of Nursing Research, National Institutes of Health, 31 9, 484-491. Center Drive, Rm 5B-13, Bethesda, MD 20892-2178. E-mail: [email protected].

20 JOGNN Volume 33, Number 1 PRINCIPLES & PRACTICE

Calcium in Women: Healthy Bones and Much More Jane H. Kass-Wolff

Osteoporosis is one of the leading health prob- processes. Only recently has there been a shift from lems of women today, and the expectation is that more the treatment of osteoporosis to its prevention. Cur- than 41 million women worldwide will be affected rent thought is that those who have higher bone within the next 20 years if current trends are not mass in adolescence may be at lower risk of devel- reversed. Prevention of osteoporosis must be a focus oping osteoporosis in later life. But the discouraging for nurses, rather than merely the treatment of the news is that 90% of all adolescent girls and young problem. The majority of bone mass is developed dur- women do not achieve the recommended dietary ing the adolescent and young adulthood years, with intake for calcium on a daily basis (Klesges et al., nearly 90% of skeletal mass accumulated by age 18. 1999). Current research has demonstrated that young Calcium is the fifth most abundant element on women’s intake of calcium is significantly below the earth (after iron, aluminum, silicon, and oxygen) recommended dietary intake. This article reviews the (Weaver & Heaney, 1999). Calcium is one of the role and functions of calcium, how it is transported, most researched minerals; more is known about cal- and factors that may significantly increase or impair cium and its relationship to bone health than any the absorption of this macronutrient. Strategies are other mineral (Weaver, 2001). However, because described that will assist nurses in assessing the much of the research is found in the nutritional and patient’s diet and making appropriate recommenda- basic science areas, it may be less available to health tions regarding the intake of calcium and other care providers. It is the purpose of this article to syn- micronutrients. A more in-depth and thorough under- thesize the literature in these areas and bring it to standing of this important mineral will enable nurses nurses and other health care providers, to strength- to strengthen their knowledge and confidence in help- en their practice by increasing their knowledge of ing patients and themselves change the focus from the role of calcium in the bone health of women and treating the disease to the improvement and mainte- men. nance of healthy bones and the prevention of other health conditions in women. JOGNN, 33, 21-33; Distribution and Functions 2004. DOI: 10.1177/0884217503258280 Keywords: Calcium—Dietary counseling—Lac- Calcium is the most abundant mineral in the tose intolerance—Micronutrients—Peak bone mass human body and is necessary in most bodily processes. The calcium ion is capable of bonding Accepted: February 2003 with 12 oxygen molecules, allowing it to bind easily with proteins. This means that calcium can be trans- Inadequate dietary calcium has long been associ- ported throughout the body (Weaver & Heaney, ated with osteoporosis. Numerous studies have 1999). Within the adult female body, calcium makes demonstrated the importance of calcium in the up 23 to 25 mol or 920-1,000 mg, 99% of which is development and maintenance of bone integrity (Ali found in the skeleton (Weaver, 2001). Calcium exists & Siktberg, 2001), as well as in nearly all other body in the bone as hydroxyapatite, Ca10(PO4)6(OH)2,

January/February 2004 JOGNN 21 TABLE 1 Comparison Between Different Recommendations for Calcium Intake

RDA for Calcium DRI for Calcium NIH Consensus Age (Recommended Dietary Allowance)a (Dietary Reference Intake)b Panel on Calciumc (Years) (mg) (mg) (mg) 1 < 4 800 500 800 4 < 9 800 800 800-1,200 9 < 11 800 1,300 800-1,200 11 < 14 1,200 1,300 1,200-1,500 14 < 19 1,200 1,300 1,200-1,500 19 < 25 1,200 1,000 1,200-1,500 25 < 51 800 1,200 1,000 51 + 800 1,200 1,000 Pregnancy 1,200 1,000 1,200-1,500 Lactation 1,200 1,000 1,200-1,500

Note. From Advanced nutrition and human metabolism (3rd edition) by Groff / Gropper, 2000. Reprinted with permission of Wadsworth, a division of Thomson Learning. aRecommended dietary allowance (RDA) is the value to be used in guiding healthy individuals to achieve adequate nutrient intake—a goal for average intake over time. bDietary reference intake (DRI) incorporates RDA but takes into consideration adequate intake (AI), tolerable upper intake level (UL), and estimated average requirement (EAR). cNIH Consensus Panel published new recommendations on calcium intake based on current research and prevention of osteoporosis. enabling this stored form of calcium to be readily drawn Digestion and Absorption on in times of inadequate intake. Calcium is not only located in bone but also distrib- Calcium is present in foods and dietary supplements as uted in both the extracellular and intracellular fluids. The relatively insoluble salts. Because calcium can be 2+ concentrations of calcium in the blood and extracellular absorbed only in its ionized form (Ca ), it must be fluids are maintained under tight regulation at 2.5 mmol/ released from these salts. This process occurs at a mildly L, with approximately half of the calcium existing as a acidic pH, causing the calcium salts to solubilize in positively charged molecule or ionized form (Ca2+) in the approximately 1 hour. However, calcium may complex plasma and the rest bound or complexed with other sub- with other minerals or dietary constituents (e.g., phytic stances (Weaver, 2001). Extracellular calcium is the main acid) under alkaline conditions, as in the small intestine, limiting the bioavailability of ingested calcium (Groff & Gropper, 2000). Most calcium is absorbed in the small intestine, specif- Even with the current emphasis on adequate ically the ileum, due to the prolonged length of time food calcium intake, 90% of adolescent girls and remains there (Groff & Gropper, 2000). The efficiency of calcium absorption is based on the current calcium status young women do not achieve the recommended within the body. During conditions of growth, such as dietary intake of calcium on a daily basis. pregnancy and lactation, childhood, and adolescence, with the accumulation of peak bone mass, as much as 75% of dietary calcium can be absorbed. It has been suggested that calcium is a threshold nutrient (Heaney, source of Ca2+ for bone development, but it also regulates 1999). Calcium intakes above the threshold may not nec- release of parathyroid hormone (PTH) and is involved in essarily produce significant long-term gain of bone, which blood clotting. Intracellularly, calcium activates a wide may be determined by other factors, including genetics range of physiological responses, including muscle con- and levels of exercise (mechanical stress). Because the tractions, hormone release, neurotransmitter release, exact threshold value depends on age, there are age vari- glycogen metabolism, vision, and cellular differentiation, ations in the levels set for dietary reference intakes for proliferation, and motility (Weaver & Heaney, 1999). men and women (see Table 1) and intake of other nutri-

22 JOGNN Volume 33, Number 1 Calcium Calcium intake absorption vitamin D

Circulating [Ca++]

PTH

Bone remodeling

Bone loss Fracture risk FIGURE 2 Model of calcium transport pathways across the intestine. Cal- FIGURE 1 cium crosses the intestine by two possible routes. One pathway Calcium, vitamin D, and the skeleton. is characterized by a nonsaturable, energy-dependent, concen- tration-dependent paracellular transport pathway, which prob- From Present Knowledge in Nutrition (8th ed.), by Bowman/Russell. ably occurs between the absorptive cells and is not hormonally Copyright 2001. Reprinted with permission of International Life Sci- regulated. The second pathway is characterized by a saturable, ences Institute. energy-dependent, transcellular pathway across the enterocyte, which has a limited transport capacity and is primarily regulated by 1,25(OH)2D via a genomic mechanism that stimulates the ents necessary for calcium absorption (Swaminathan, production of calbindin D. Calbindin D is primarily a cytosolic 1999). There remains much controversy, however, regard- protein that acts as an intracellular “ferry” for calcium across ing adequate levels of calcium intake required in men and the aqueous cytosolic compartment. Some calcium may also be women regardless of age. transported through the cell in endosomal and lysosomal vesi- cles and exit from the cell via the process of exocytosis. From Biochemical and Physiological Aspects of Human Nutrition (p. Calcium Transport 656), by M. H. Stipanuk, Philadelphia, PA: W. B. Saunders Company. Copyright 2000. Reprinted with permission from Elsevier Science. There are two main transport processes responsible for the absorption of calcium (see Figure 1). The first process is transcellular, taking place in the duodenum and proximal jejunum, and is active transfer, requiring energy and magnesium Mg2+ and sodium are pumped into the a binding protein called calbindin (Groff & Gropper, cell (Groff & Gropper, 2000; Weaver, 2001). Of particu- 2000). This process is regulated by calcitriol or vitamin D, lar note for health care providers is that the calcitriol- 1,25(OH)2D3 (Weaver & Heaney, 1999). Ingestion of regulated absorption of calcium decreases with age, par- small amounts of calcium stimulates the calcitriol- ticularly with estrogen decline in menopause. The renal dependent calcium transport system, particularly with production of calcitriol becomes less efficient in response intakes of less than 400 mg and under growth conditions, to PTH, also exacerbated by the aging process. as in adolescence or pregnancy. As serum calcium levels A second process of calcium absorption called paracel- decrease, there is an increase in PTH, causing release of lular diffusion involves passive diffusion of calcium calcitriol (see Figure 2). Calcitriol-induced absorption of between cells in the jejunum and ileum. Increased absorp- calcium involves changes in the lipid membrane of the tion of calcium with this process occurs best when the enterocyte (cells lining the intestine) and initiates synthe- intake of calcium is high and takes place in a sodium- sis of calbindin, a transport protein that shuttles calcium calcium exchange system whereby three Na+ are through the cytoplasm of the enterocyte to the basal exchanged for one Ca2+ (Groff & Gropper, 2000; membrane. On arriving at the basal membrane, calcium McCance & Huether, 1998). Once in the blood, calcium must be moved out of the cell into the extracellular fluid. is transported in one of three forms: (a) bound to protein This extrusion process requires energy in the form of (approximately 40%), mainly albumin, globulin, and pre- adenosine triphosphate (ATP) and a vitamin D–regulated albumin; (b) complexed with phosphate, sulfate, or cit- enzyme (Ca2+Mg2+ ATPase) that hydrolyzes ATP and rate (approximately 10%); and (c) free or ionized (50%) releases energy for pumping Ca2+ out of the cell while (Groff & Gropper, 2000).

January/February 2004 JOGNN 23 The duodenum and proximal jejunum are more effi- TABLE 2 cient sites for active absorption of calcium due to the Foods Containing Phytate and Oxalate acidic pH (6.0) and the presence of calbindin. However, the largest amount of calcium is absorbed in the ileum due Phytate to the prolonged time that chyme (product of digestion) Husks of grains, legumes, seeds, soybeans, pinto beans, remains there (Weaver & Heaney, 1999). However, the navy beans, split peas, and other legumes, whole wheat, small intestine is not the only site where calcium is oats, rye, barley, and parsnips absorbed. Often calcium binds to other minerals and Oxalate especially to dietary fiber. In most instances, this would Spinach, rhubarb, beet greens, nuts such as almonds, chocolate, tea, wheat bran, strawberries prevent the calcium from being absorbed, but the large intestine contains bacteria that can act on some fer- mentable fibers, such as pectin, releasing the bound calci- gut and is too large to be absorbed intact via the paracel- um. Up to 5% or 8 mg of calcium can be absorbed daily lular route (Weaver, 2001). Because foods containing from the colon (Groff & Gropper, 2000). phytic acid (e.g., legumes, soybeans, grains) are consumed in higher quantities than oxalates, calcium absorption can Factors Influencing Absorption be diminished by as much as 25% (Heaney, 1999). The The bioavailability (absorption and utilization) of cal- deleterious effects of phytates on growth and mineral sta- cium depends on many factors, including physiological tus have led to attempts to reduce the phytate content in factors, medications, stage of life of the individual, soybeans. Various methods used include exogenous phy- lifestyle factors (Need et al., 2002), gender (Anderson, tase, ultrafiltration, and extraction of the protein without Sell, Garner, & Calvo, 2001), and coexisting pathologic the phytate. Fiber was once believed to decrease the conditions (Krebs, 2001). Significant physiological factors absorption of calcium through either physical entrapment include (a) vitamin D and micronutrient status, (b) intes- or binding with certain residues (Weaver & Heaney, tinal transit time, and (c) mucosal mass within the intes- 1999). However, it is now thought that fiber is not the tine (Barger-Lux, Heaney, Lanspa, Healy, & DeLuca, culprit in decreasing calcium absorption, but rather the 1995). Lack of vitamin D, zinc, magnesium, and phos- phytic acid associated with fiber-rich foods, since purified phorus will decrease calcium absorption. Increased intes- fibers do not negatively affect calcium absorption tinal transit time (e.g., diarrhea) and decreased mucosal (Heaney & Weaver, 1995). mass secondary to conditions such as malabsorption will Another food component, ipriflavone, a synthetic also decrease calcium absorption. isoflavone (plant-derived compounds with estrogenic properties) similar to what is found in soybeans, has been Food Components Affecting Calcium Absorption. Vit- shown to enhance intestinal calcium absorption (Arjman- amin D improves absorption of calcium, as does concur- di, Khalil, & Hollis, 2000). Ipriflavone acts similarly to rent ingestion of food or lactose along with the calcium estrogen but is far less potent. Intestinal cells contain source. Sugars, sugar alcohols, and protein seem to have estrogen receptors, and estrogen directly enhances calci- a similar positive effect on calcium absorption (Schaafs- um uptake (Salih, Sims, & Kalu, 1996). Calcium uptake ma, De Vries, & Saris, 2001). Inulin (a nondigestible was significantly greater in the duodenal, ileal, and oligosaccharide) and fructooligosaccharides (fructose colonic cells in rats fed a calcium-supplemented diet and residues attached to glucose as in wheat, rye, asparagus, given ipriflavone or estrogen compared with rats not onions, and other plants, or industrially produced) given these supplements (Arjmandi et al., 2000). Because increase calcium absorption in adolescents and adults ipriflavone is synthetically produced, the phytic acid nor- (Mann, 2001; van den Heuvel, Muys, van Dokkum, & mally found in soybeans has been processed out and Schaafsma, 1999). However, in studies, the levels of these therefore is not a critical factor in absorption of calcium. nondigestible oligosaccharides have been very high; they Research is still in the early stages, but isoflavones may are unlikely to be used in foods for humans at these lev- have a role in enhancing calcium absorption. els because of the digestive discomfort they produce (Bar- clay, 2001). Medications. Certain medications interfere with calci- A diet containing products such as oxalates, phytates, um absorption, including antibiotics, anticonvulsants, and fiber may decrease absorption of calcium. In humans, and corticosteroids. Within the category of antibiotics is the most potent inhibitor of calcium absorption is oxalate tetracycline, a drug that chelates (binds) minerals to form or oxalic acid, found in the foods listed in Table 2. High a complex that renders both the drug and the mineral dietary oxalate may be a determinant in the formation of unavailable. Minocycline has a less pronounced chelation calcium oxalate kidney stones. Another modest inhibitor effect, and the effect doxycycline has on calcium remains of calcium absorption is phytic acid, which forms a salt controversial (Utermohlen, 2000). Anticonvulsants, such with calcium that cannot be completely dissociated in the as phenytoin and phenobarbital, can cause hypocalcemia

24 JOGNN Volume 33, Number 1 by three different mechanisms: (a) decreased calcium the supplement may be a more pressing issue for some absorption, possibly through inhibition of calcium-binding individuals. protein; (b) stimulation of catabolism of cholecalciferol Calcium in food sources, particularly from milk and (vitamin D3), a precursor to vitamin D; and (c) increased milk products, is thought to be better absorbed than from catabolism of vitamin K, with reduction in formation of supplements (Cadogan, Eastell, Jones, & Barker, 1997). It vitamin K–dependent proteins involved in calcium han- is interesting to note that the bioavailability of calcium dling by osteoblasts (Utermohlen, 2000). Corticosteroids from Brassica vegetables such as broccoli is higher than administered long-term increase the need for vitamin B6, from dairy products, although the amounts of calcium are calcium, and vitamin D (Utermohlen, 2000). Chronic use lower in these vegetables (see Table 3). The reason for this of anticonvulsants and corticosteroids are key factors in is unclear (Weaver & Heaney, 2001). When dietary intake the development of secondary osteoporosis in young is assessed, it is appropriate to assume that the calcium women. absorption is similar for most dairy foods, calcium salts used to fortify foods, and supplements, and one does not Stage of Life. Stage of life can influence calcium have to focus unnecessarily on the bioavailability absorption. Elderly women may have impaired calcium (Weaver, 2001). But when alternatives to dairy foods are absorption due to a lack of intestinal responsiveness to included in the diet as a primary source of calcium, it is 1,25 hydroxyvitamin D (Pattanaungkul et al., 2000).With important to ensure that nutrients other than calcium are aging also comes a decrease in stomach acid or achlorhy- provided by these products in adequate amounts includ- dria or an increased stomach pH. Calcium may not coming magnesium, vitamin D, riboflavin, and vitamin B-12 pletely dissociate from the salt, leading to decreased (Weaver, 2001). absorption. According to Weaver (2001), achlorhydria may not present an appreciable problem if the calcium is Other Necessary Micronutrients taken with food. Additionally, low molecular weight com- Calcium is not the only nutrient important to bone plexes such as calcium carbonate can be absorbed intact health, but it is the one most likely to be deficient. Other via the paracellular route even in persons with achlorhy- micronutrients required to enhance bone growth include dria (Weaver & Heaney, 1999). phosphorus, magnesium, boron, zinc, iodine, copper, and Lifestyle Factors. Lifestyle factors may affect calcium manganese. A constant ratio of calcium to phosphorus of absorption. Need and associates (2002) demonstrated approximately 2 to 1 is necessary for the formation of that in postmenopausal women, smoking was associated hydroxyapatite crystals to produce bone. Present-day diet with a reduction in calcium absorption efficiency due to provides adequate and, often, excessive amounts of phos- suppression of the PTH-calcitriol axis. Long-term con- phorus in the form of food preservatives and carbonated sumption of alcohol in high amounts has been thought to beverages, and will be discussed later (Anderson et al., adversely affect calcium-regulating hormones. A recent 2001). Magnesium depletion causes decreased PTH secre- study (Wolf et al., 2000) found that even moderate tion, leading to decreased vitamin D levels (Fleet & Cash- amounts of alcohol in perimenopausal women might have man, 2001). Boron and manganese are important in bone a negative effect on calcium absorption. Further research formation or remodeling. Adequate amounts of both and replication of these studies longitudinally in younger micronutrients improve bone calcification (Nielsen, women are required to validate the effect of these lifestyle 2001). Zinc regulates secretion of calcitonin from the thy- factors on bone health. roid gland and influences bone turnover, as does iodine. Finally, copper induces low bone turnover by suppressing Absorption of Dietary Supplements both osteoblastic and osteoclastic functions (Okano, Various forms of calcium are found in dietary supple- 1996). Much remains to be discovered regarding the role ments. The absorption varies depending on the calcium of trace elements in bone health, but calcium must be salt. The approximate absorption rates of the various cal- available at adequate levels along with various micronu- cium salts after ingestion of 250 mg of calcium are as fol- trients for bone growth to occur during periods of growth lows: calcium carbonate, 36% to 42% is absorbed; calci- and for maintenance of bone with aging. um acetate and calcium lactate, 28% to 36%; calcium gluconate, 24% to 30%; and calcium citrate, 27% to Interactions of Calcium With Other Nutrients 33% (Groff & Gropper, 2000). Other studies have Dietary patterns of adolescents and adults have demonstrated that calcium absorption from calcium cit- changed over the past 25 years. Overt nutrient deficiency rate and calcium carbonate are equal with equivalent diseases, such as rickets, are no longer the public health bioavailability (Heaney, Dowell, Bierman, Hale, & Ben- problems they once were. Today, nutrition problems dich, 2001). Absorption of calcium supplements may vary involve dietary excesses and imbalances (Story & Alton, slightly from individual to individual, but bioavailability 1996). The total energy intake of adolescents and adults need not be of concern from one form to another. Cost of indicates an excessive quantity of fat and an insufficient

January/February 2004 JOGNN 25 TABLE 3 High-Calcium Foods

Vitamin D enables calcium to be used effectively. Our bodies make adequate amounts when the skin is exposed to sunlight on a regular basis. Magnesium is also very important to bone health. The RDA is 320 mg per day, but an intake of 600 mg per day is beneficial and safe. Food Amount Calcium (mg) Magnesium (mg) Vegetables (cooked, unless specified) Collard greens* 1 cup 300 10 Broccoli* 1 cup 150 38 Kale 1 cup 179 Spinach (boiled)† 1 cup 278 158 Turnip greens 1 cup 229 Beet greens 1 cup 165 Bok choy 1 cup 200 Mustard Greens 1 cup 150 Rhubarb† 1 cup 348 Watercress (raw)* 1 cup 53 Parsley (raw) 1 cup 122 Dandelion greens 1 cup 147 Acorn squash (baked) 1 cup 90 86 Rutabaga 1 cup 82 40 Cauliflower 1 cup 30 12 Brussels sprouts 1 cup 56 32 Sea vegetables (kelp) 1 cup 300-600 Dairy Milk (skim)** 1 cup 300 34 Milk (whole)** 1 cup 288 Cheese (American, Swiss, cheddar) 1.5 cups 300 4-14 Ice milk 1 cup 204 Nonfat yogurt 1 cup 294 40 Cottage cheese (low fat) 1 cup 150 6 Ricotta cheese, whole milk 1 cup 509 29 Ricotta, cheese, part-skim milk 1 cup 669 36 Fish (bones: the major source of calcium in fish) Sardines (with bones)** 3.5 oz can (drained) 300 36 Salmon (canned)** 1 cup 431 39 Oysters (raw) 1 cup 226 Beans and Legumes Garbanzo beans (chickpeas) 1 cup (cooked) 150 Black beans 1 cup (cooked) 135 35 Pinto beans 1 cup (cooked) 128 35 Tortillas, corn 2 120 10 Nuts and Seeds Sesame seeds – ground 3 Tbs. 300 Almonds 1 oz 75 86 Sunflower seeds 1 cup (hulled) 174 Brazil nuts 1 cup 260 Hazelnuts/filberts 1 cup 254 Other Sources Blackstrap molasses 1 Tbs. 137 Orange juice (calcium fortified)** 1 cup 210 20 Fortified breakfast cereals** 4 oz 200 128 Energy bars 1 ea 300 140 Dates, chopped 1 cup 274 112 Tofu, firm (calcium enriched)** 2 oz 258 60 Tempeh 4 oz 172 Soymilk, fortified, fat-free** 1 cup 400 Mineral waters 1 liter 90-450 *Excellent source of calcium > 50% absorbed. **Good source of calcium > 30% absorbed. †Poor source of calcium due to phytates.

26 JOGNN Volume 33, Number 1 quantity of carbohydrate-rich fibers (Parker, 2000). of calcium and sodium by the kidneys is linked. A reduc- Barzel and Massey (1998) noted that the average Ameri- tion in the absorption of sodium will lead to increased can diet is high in protein and low in fruits and vegeta- calcium excretion (Swaminathan, 1999). In a study of bles. Even those who consume the least protein eat pubertal females, urinary sodium excretion was the major approximately 25% more than the recommended dietary determinant of urinary calcium excretion, but an associa- allowance (RDA), according to researchers (Tufts Univer- tion between loss of bone mineral density (BMD) and uri- sity, 2001). nary sodium excretion was not found (Matkovic, 1996). There remains considerable controversy regarding the Protein and Sodium Excess. The effect of dietary pro- role sodium plays in bone density and its effects on calci- tein on bone is a complex issue. For more than a century, um excretion (Cohen & Roe, 2000). it has been known that high levels of protein generate a large amount of acid, mainly as sulfates and phosphates. Excess Phosphorus. Several dietary surveys have To buffer the acid, the body utilizes calcium that is demonstrated that the intake of phosphate is high among resorbed from bone, adversely affecting bone density. A adolescents and women. The use of phosphate-containing recent study by Dawson-Hughes demonstrated conflicting food additives in the processing of food is one reason for results, showing that in adults over age 65, those who this. In 1979, phosphorus food additive use in the United consumed the most calcium (1,350 mg per day) and the States was estimated at approximately 320 mg per day, most protein had higher bone mineral densities after 3 but by 1990 that level rose to 470 mg per day per capita years than people consuming less calcium, less protein, or (Anderson et al., 2001). In addition, large amounts of soft both (Tufts University, 2001). Older adults may not con- drinks containing phosphate are consumed daily sume amounts of protein that are adequate to maintain (Wyshak, 2000). Teenagers have doubled or tripled their muscle mass, and muscle tone may be adversely affected, consumption of soft drinks and have cut their consump- causing decreased mechanical forces on the bone and tion of milk by more than 40%. Wyshak (2000) surveyed leading to decreased bone mass (Weaver, 2001). It also 460 9th and 10th graders regarding their level of physical may be that high levels of protein work synergistically activity, carbonated beverage consumption, and bone with calcium to improve bone density (Tufts University, fractures. Nearly 80% of the sample drank carbonated 2001), although level of physical activity, a confounding beverages, with 49.8% drinking cola beverages only, factor in this study, was not identified. Until more 11.5% noncola beverages only, and 15% both cola and research supports these data, caregivers should continue noncola beverages. The majority of the sample drank regular (sugar) beverages in contrast to diet sodas. Results indicated that the consumption of carbonated beverages actose intolerance may be a deterrent for and bone fractures are associated (p = .004), and among L physically active girls who drank cola beverages, there achieving adequate calcium levels, but yogurt, was an even more significant risk of bone fractures (p = hard cheeses, and cottage cheese are often well- .002). Phosphate is an important regulator of the production of the active metabolite of vitamin D, 1,25 dihy- tolerated because the lactose has been removed. droxyvitamin D. It has been suggested that high phosphate intake may lead to low serum 1,25 vitamin D, which can adversely affect bone metabolism and lead to hypocalcemia in postmenopausal women (Groff & Grop- to recommend that their patients consume the recom- per, 2000). Whether these adverse effects are related to mended amounts of protein, whether vegetable or meat the hypocalcemic effect of the phosphorus content or to (0.8 g/kg/day for adults) (Whitney, Cataldo, & Rolfes, the metabolic release of hydrogen ions from the phos- 1998). Additionally, caregivers should continue the current recommended amounts of calcium and higher phoric acid is not yet clear (Anderson et al., 2001). amounts of dietary fruits and vegetables to serve as alka- Regardless of the cause, minimizing the intake of carbon- li buffers that reverse acid-induced obligatory urinary cal- ated beverages is an important goal in dietary counseling cium loss (Barzel & Massey, 1998; Heaney & Rafferty, of children and adults. 2001; New, Robins, & Reid, 1998). Excess Caffeine Intake. Caffeine is consumed by mil- Another nutrient that may affect calcium levels is sodi- lions of people throughout the world, and increasing con- um. Braggion, Matsudo, and Matsudo (1996) found that sumption of carbonated beverages is a significant source adolescent girls ages 14 to 19 years ate diets high in proof caffeine. Epidemiological studies have found a negative tein (38.3% above RDA) and sodium (6 times higher than association between long-term caffeine intake and bone minimum), with lower calcium and phosphorus intake density in postmenopausal women. Excessive use of caf- (51.5% and 36.7% below RDA, respectively). Resorption feinated products (four cups of coffee a day for many

January/February 2004 JOGNN 27 years) increases urinary calcium excretion due to a reduc- Reasons for this bone loss during weight reduction tion in renal tubular resorption and ultimately drains off vary. Studies have found that postmenopausal women skeletal calcium in menopausal women, doubling the risk and adolescents on moderately low caloric intakes of hip fracture. Ingestion of approximately a liter (34 oz) decrease their intake of dairy products, which provide of coffee daily causes a loss of 1.6 mmol/L of calcium about 55% of the calcium in the diet (Cadogan, Blum- (Harris, 1998). However, drinking one or two cups of cof- sohn, Barker, & Eastell, 1998). Other studies indicate that fee or 8 to 12 ounces per day of a caffeinated soft drink is serum PTH may rise and contribute to bone resorption. probably safe (Hasling, 1992; Heaney, Abrams, et al., This may be compounded by a reduced intake of nutrients 2000). Studies in young subjects have not shown a con- and calcium, leading to bone loss (Ricci et al., 2001). sistent negative calcium balance during caffeine adminis- There may also be an increase in sex hormone–binding tration. Available evidence suggests that caffeine may globulin due to loss of body fat, decreasing circulating have very little deleterious effect in younger women levels of sex hormones, and estrogens and androgens that because they are able to compensate for the increased uri- have been found to enhance calcium absorption (Hergen- nary losses, but additional research is needed regarding roeder, 1995). Although the reasons for bone loss remain interactions of common nutrients and calcium and their unclear, dieting may contribute to potential complications long-term effects (Heaney, Abrams, et al., 2000). with bone density. Persons at greatest risk for the possible adverse effects of dieting are adolescents and women of Factors Limiting Calcium Intake all ages who are near-normal or moderately overweight, through their consumption of suboptimal diets low in cal- Weight Loss and Weight Cycling. Dietary excess cou- cium and other essential vitamins and minerals (Andersen pled with sedentary lifestyles contribute to an increasing- et al., 1997; Jensen et al., 2001). ly obese adolescent population (Adams, 1999). Many of these individuals diet frequently and aggressively in pur- Lactose Intolerance. Perceived or actual lactose intol- suit of a thin ideal, which may prevent optimal or peak erance to dairy products may also contribute to decreased bone formation and substantially increase the later risk of calcium intake. Lactose intolerance is a condition that developing osteoporosis. The risk of osteoporosis increas- results from the inability to digest the milk sugar lactose, es in individuals who have a history of weight loss. due to a lack of the enzyme lactase required to digest and Weight-loss induced reduction in BMD is more than dou- ensure efficient absorption of lactose (Whitney et al., ble the expected annual rate of loss for weight-stable 1998). Bloating, gas, abdominal discomfort, and diarrhea women (Shapses et al., 2001). In obese women, BMD is characterize symptoms of lactase deficiency. Lactase levels increased, but a moderate weight loss of 10% to 14% can are highest immediately after birth, but begin to decline decrease BMD by 1.6% to 2% in postmenopausal women precipitously during childhood and adolescence to about (Jensen, Kollerup, Quaade, & Sørensen, 2001). Short- 5% to 10% of the activity at birth. Only about 30% of term fasting for 4 days in a group of dieting obese women the population retains enough lactase to digest and with an average age of 39 years (plus or minus 9 years) absorb lactose efficiently throughout their adult life. This resulted in a 50% reduction in bone formation rates condition is more prevalent in certain populations, such (Andersen, Wadden, & Herzog, 1997). A study of long- as Asian Americans and Native Americans. term weight loss in healthy premenopausal women by Buchowski, Semenya, and Johnson (2002) demonstrat- Salamone and colleagues (1999) found that the interven- ed that the average intake of calcium in lactose-intolerant tion group who altered their lifestyle to lose weight had a African American women was significantly lower than in higher rate of BMD loss at the hip and lumbar spine than lactose-tolerant women (388 ± 150 mg/day compared did the weight-stable control group. Jensen and colleagues with 763 ± 333 mg/day), although neither group achieved (2001) supplemented a group of obese women with 1 g of the dietary reference intake for calcium (1,000 mg/day). calcium and found that the supplemented group main- In the lactose-tolerant women, 46% of their calcium came tained their bone density contrary to the nonsupplement- from milk and dairy products, compared with only 12% ed group. In addition, they maintained both groups on a in the lactose-intolerant group. It was also noted that weight loss regimen that contained a higher energy con- lactose-intolerant women had higher body mass index tent than that of most low-calorie diets and found that than lactose-tolerant women (p = .008, t test) (Buchows- regardless of added energy, the nonsupplemented group ki et al., 2002). lost bone mass (Jensen et al., 2001). Studies of pre- Diagnosis of lactose intolerance can be performed menopausal women and weight loss indicate divergent quickly with a breath hydrogen test (Buchowski et al., findings in terms of bone loss (Shapses et al., 2001). 2002). Managing lactose intolerance requires some Weight cycling (a history of one or more weight reduc- dietary changes, but total elimination of milk products is tions and regain) is also associated with reduced BMD at unnecessary. Fortunately, many people with lactose intol- the spine and distal radius (Fogelholm et al., 1997). erance can consume small amounts of milk products,

28 JOGNN Volume 33, Number 1 especially if they take them with other foods. A change in Cancer and Other Disorders the gastrointestinal bacteria, not the reappearance of the Increasing calcium and dairy food intake appears to enzyme, accounts for the ability to adapt to milk prod- reduce the risk of colon cancer, possibly through lowering ucts. In many cases, lactose-intolerant people can tolerate fecal free bile acid and free fatty acid concentrations, thus fermented milk products such as yogurt and acidophilus lowering cytotoxicity. Additionally, dietary calcium and milk. The bacteria in these products digest lactose for vitamin D may also protect against breast and other can- their own use, leaving these foods relatively low in lac- cers. There has long been concern regarding the use of cal- tose. Hard cheeses and cottage cheese are often well tol- cium supplements and increased risk of kidney stones. erated because most of the lactose is removed with the Current studies indicate that the opposite is true, that kid- whey during processing, and the longer cheese is aged, the ney stones may be increased in women who have low less lactose it contains (Whitney et al., 1998). dietary intake of calcium and magnesium (Hall et al., 2001). The mechanism is thought to be that calcium binds Additional Benefits of Calcium with the oxalate, a poorly absorbed compound, preventing the oxalate from producing stones (Weaver, 2001). Calcium supplementation of 1,200 mg daily for 3 months Calcium Link to Prevention of Weight Gain has also been shown to significantly reduce symptoms of Calcium intake may also prevent increases in body premenstrual syndrome by 48%, compared with 30% in weight leading to obesity. Davies and colleagues (2000) a placebo group (Thys-Jacobs, Starkey, Bernstein, & Tian, demonstrated an association between calcium intake and 1998). The positive effects of calcium extend beyond only body weight in the reevaluation of five clinical studies of the growth and maintenance of bone tissue. calcium intake. All participants were women in their 3rd, 5th, or 8th decades of life. Significant negative associations between calcium intake and weight were found for Clinical Application and Recommendations all three age groups, and the odds ratio for being over- In the current health care system, nurses are often the weight (BMI of more than 26) was 2.25 for young women initial health professional to assess dietary behaviors of in the lower half of the calcium intakes of their respective individuals, whether in the hospital, clinic, or community study groups (p < .02). Relative to those receiving a setting. Nurses are often required to fill in the gaps when placebo, the calcium-treated participants in the controlled other professionals are not available to provide necessary trial exhibited a significant weight loss. Estimates of the counseling and support to patients regarding nutritional relationship indicate that a 1,000-mg calcium intake dif- problems, which necessitates that they have knowledge ference is associated with an 8-kg difference in mean body commensurate with these responsibilities (Maillet & weight and that calcium explains approximately 3% of Young, 1998). The following are suggestions on assessing the variance in body weight (Davies et al., 2000). Carruth and counseling women appropriately regarding calcium and Skinner (2001) assessed preschool children’s food and diet. consumption for 24 to 60 months and related these findings to body composition at 70 months. These researchers Nursing Assessment found that higher mean longitudinal calcium intakes and Routine dietary assessment by the nurse should occur more servings per day of dairy products were associated at annual well visits for all children, adolescents, and with lower body fat. Additional research is required, but women to assess dietary and supplemental intake of cal- these are promising results for maintenance of bone cium and other important nutrients, such as protein, car- health and weight. bohydrates, and fats. A 24-hour diet recall, although limited, may give a reasonable idea of the patient’s routine Hypertension dietary intake. It is important to ask the patient if the pre- Calcium supplementation may prevent high blood vious 24-hour intake is representative of her normal daily pressure and pregnancy-related hypertensive disorders. It intake. If not, a more complete recall may need to be has been demonstrated that supplementing 1 g of calcium acquired by asking the client to write down everything she daily during pregnancy can lower high blood pressure, has eaten for 3 to 4 days and to return the list via mail or particularly in women at high risk of gestational hyper- e-mail. Calculation of an approximate calcium intake can tension or who have low dietary calcium intake (Atallah, be quickly assessed using the list of foods high in calcium Hofmeyr, & Duley, 2000). Recently the Dietary in Table 3. Approaches to Stop Hypertension (DASH) study demon- If the assessment reveals low calcium intake, the nurse strated an impressive response of lowered blood pressure should question the woman regarding an actual or per- to a diet rich in fruits and vegetables and an even greater ceived lactose intolerance and offer information and reduction if three servings of low-fat dairy foods were counseling about dairy products that have decreased or consumed daily (Sacks et al., 1999). no lactose. The use of lactase supplements in the form of

January/February 2004 JOGNN 29 pills, chewable tablets, and drops may be of great assis- to have five to six servings of fruits and vegetables daily tance. These supplements contain enzymes made either for adequate intake of micronutrients and should main- from a fungus, Aspergillus oryzae, or yeast known as tain proteins at 44 to 50 g per day based on age. If a Kluyveromyces lactis. Patients may need to experiment woman is pregnant and has risk factors for or a history of with the dosing, in that there are no dosing recommenda- gestational hypertension, she should increase calcium in tions on these over-the-counter supplements (McMahan, her diet or in supplements, to the upper limits of the South, & Crespin, 2002). These supplements should be appropriate range for her age. Adolescents and women of taken prior to the ingestion of foods that contain or all ages should be encouraged to limit or restrict com- potentially contain lactose. pletely their intake of carbonated beverages, particularly Evaluation of caffeine intake, in the form of coffee, tea, those containing phosphorus and caffeine. Including a chocolate, and sodas, and alcohol consumption is recom- glass of milk with each meal can provide nearly 900 mg mended to identify factors that may inhibit calcium of calcium per day. If the woman is concerned regarding absorption or increase urinary calcium loss. Dieting pat- weight, the nurse could suggest that she gradually terns should be investigated. If weight cycling or extreme decrease the fat content of the milk to 1% or skim. Other diets are noted, counseling is required regarding necessary means of ensuring adequate calcium is through fortified calcium intake, with potential referral to a dietician or foods such as orange juice, breakfast cereals, certain bot- sensible weight loss program, such as Weight Watchers tled waters, and sports bars, but these should be limited. (Weight Watchers Group, Farmington Hills, MI). Other It must be remembered that calcium-fortified foods and lifestyle habits such as smoking should be evaluated and calcium supplements are a supplement to, not a substitute the patient’s readiness to quit determined; women should for, foods naturally containing calcium (Miller, Jarvis, & be counseled regarding the risks of smoking, especially if McBean, 2001). they are menopausal. Each patient’s physical activity The use of calcium-fortified foods raises several con- level, such as walking and lifting weights to increase bone cerns, and the client should be counseled accordingly density, should be assessed, and the importance of weight- about (a) calcium toxicity when greater than 2,500 mg bearing activities should be stressed. per day of calcium are ingested and (b) the differences in The nurse will need to determine the medications that the bioavailability of calcium in calcium-fortified foods. the patient takes and caution that calcium and tetracy- Calcium toxicity can increase the risk of kidney stone for- cline form an insoluble complex, limiting absorption of mation and decreased absorption of zinc and iron. As to both the mineral and the antibiotic. The patient should be bioavailability, a recent study found that calcium-fortified encouraged to take the calcium with meals and the tetra- soy beverages are not comparable to cow’s milk as a cycline 2 hours before or after the meal for maximum source of calcium (Heaney, Dowell, Rafferty, & Bierman, effect. Women on anticonvulsants or corticosteroids 2000). Soy beverages contain very little calcium, approx- should supplement with calcium to the maximum limit imately 40 mg per serving, and are therefore fortified with and exercise to strengthen muscles and bones. varying amounts of calcium ranging from 80 to 500 mg. When calcium-fortified soy beverages were compared with the calcium in cow’s milk in 16 healthy men, the soy beverage was absorbed at only 75% that of cow’s milk. Dietary recommendations for adolescents To achieve comparable absorption as cow’s milk, soy beverages would have to be fortified with 500 mg per serv- and young women should include ing. Additionally, persons only ingesting calcium-fortified limiting carbonated beverages, caffeine, foods and avoiding dairy products will miss dairy food nutrients such as vitamin D (fortified), potassium, and sodium, and protein and encouraging riboflavin. the maximum levels of calcium. If the nurse is recommending calcium supplements, dosage and timing are important factors. Calcium is best absorbed in doses of 500 mg or less. Most calcium supplements require adequate gastric acid for efficient uti- Dietary Counseling lization; therefore, the woman should be counseled to Dietary recommendations should stress the dietary ref- take calcium supplements, particularly calcium carbon- erence intake as proposed by the NIH Consensus Com- ate, with meals. mittee (1994) (see Table 1). The nurse should inform the Another consideration for nurses is women who do not woman about the improved absorption of calcium from receive adequate exposure to the sun to produce sufficient dietary intake and provide her with a list of foods high in vitamin D. There are situations, such as women whose calcium that includes the number of milligrams of calcium religion or culture requires them to be completely covered per food (see Table 3). The woman should be encouraged or disabled women with minimal exposure to the sun,

30 JOGNN Volume 33, Number 1 to provide the maximum benefit to the body. Consumers TABLE 4 should be educated that meeting calcium needs is best Major Implications for Nursing Practice accomplished by consuming a balanced diet along with Adequate levels of calcium and other important micronutri- food naturally containing calcium. Prevention of osteo- ents in the diet: porosis and other chronic health problems related to cal- • Maximize development of peak bone mass in cium intake can only be accomplished through continued adolescents research and counseling by nurses to correct dietary mis- • Prevent osteoporosis information. Clearly, nurses need to assume an advocacy • Prevent hypertension role to improve North Americans’ calcium status. • Prevent preeclampsia in pregnancy • Prevent weight gain REFERENCES • Reduce risk of kidney stones Adams, J. S. (1999). Genetics of osteoporosis. In J. S. Adams & • Reduce risk of colon cancer B. P. Lukert (Eds.), Osteoporosis: Genetics, prevention • Reduce premenstrual symptoms and treatment. Boston: Kluwer Academic. Ali, N., & Siktberg, L. (2001). Osteoporosis prevention in who should have supplements of 400 to 800 IU of vita- female adolescents: Calcium intake and exercise partici- min D per day. If calcium supplementation is necessary in pation. Pediatric Nursing, 27, 132, 135-139. lactose intolerant or other individuals, a variety of brands Andersen, R. E., Wadden, T. A., & Herzog, R. J. (1997). are available that provide calcium with vitamin D and Changes in bone mineral content in obese dieting women. Metabolism 46 other necessary minerals, including magnesium, boron, , , 857-861. Anderson, J. J. B., Sell, M. L., Garner, S. C., & Calvo, M. S. copper, and zinc. Women should be cautioned about (2001). Phosphorus. In B. A. Bowman & R. M. Russell using a calcium supplement made from oyster shells, as (Eds.), Present knowledge in nutrition (8th ed.). Washing- they may contain lead. Cost may determine the calcium ton, DC: ISLI Press. supplement recommended for an individual, but the form Arjmandi, B. H., Khalil, D. A., & Hollis, B. W. (2000). Ipri- of calcium (carbonate, citrate) may also have to be taken flavone, a synthetic phytoestrogen, enhances intestinal into consideration to limit side effects. calcium transport in vitro. Calcified Tissue International, Magnesium is important for the absorption and uti- 67, 225-229. lization of calcium. It is unlikely that a deficiency would Atallah, A. N., Hofmeyr, G. J., & Duley, L. (2000). Calcium be identified, because magnesium is widespread in foods. supplementation during pregnancy for preventing hyper- Those foods highest in the mineral include unpolished tensive disorders and related problems. Cochrane Data- base of Systematic Reviews grains, nuts, legumes, and green leafy vegetables, with , CD001059. Barclay, D. (2001). Calcium bioavailability from foods. In P. fruits and diary products containing intermediate levels. Burckhardt, B. Dawson-Hughes, & R. P. Heaney (Eds.), The RDA for magnesium is 320 mg per day, with most Nutritional aspects of osteoporosis. San Diego, CA: Aca- multivitamins and fortified foods containing a portion of demic Press. that daily requirement. Barger-Lux, M. J., Heaney, R. P., Lanspa, S. J., Healy, J. C., & Adequate levels of calcium in the daily diet are impor- DeLuca, H. F. (1995). An investigation of sources of vari- tant for optimal health. Appropriate assessment and ation in calcium absorption efficiency. Journal of Clinical counseling of the client by the nurse can have a significant Endocrinology and Metabolism, 80, 406-411. role in prevention of chronic health problems when initi- Barzel, U. S., & Massey, L. K. (1998). Excess dietary protein can ated at an early age (Table 4). adversely affect bone. Journal of Nutrition, 128, 1051- 1053. Braggion, G., Matsudo, S., & Matsudo, V. (1996). Nutritional Conclusions risk factors for bone health and physical fitness among adolescents. Medicine and Science in Sports and Exercise, The nurse is the most likely person to interact with a 24, S40. woman regarding her diet. The macronutrient calcium is Buchowski, M. S., Semenya, J., & Johnson, S. J. (2002). Dietary influential for not only the development and maintenance calcium intake in lactose maldigesting intolerant and tol- of bone but also many chemical and regulatory processes erant African-American women. Journal of the American within the human body. More is known about calcium College of Nutrition, 21, 47-54. and its relationship to bone than any other mineral. More Cadogan, J., Blumsohn, A., Barker, M. E., & Eastell, R. (1998). remains to be uncovered, however, regarding the effects A longitudinal study of bone gain in pubertal girls: calcium may have on the prevention of other health prob- Anthropometric and biochemical correlates. Journal of lems, such as colon cancer, hypertension, polycystic ovar- Bone and Mineral Research, 13, 1602-1612. ian syndrome, and obesity. Calcium does not function in Cadogan, J., Eastell, R., Jones, N., & Barker, M. (1997). Milk intake and bone mineral acquisition in adolescent girls: isolation but requires other nutrients and micronutrients

January/February 2004 JOGNN 31 Randomised, controlled intervention trial. British Medical Jensen, L. G., Kollerup, G., Quaade, F., & Sørensen, O. H. Journal, 315, 1255-1260. (2001). Bone mineral changes in obese women during a Carruth, B. R., & Skinner, J. D. (2001). The role of dietary cal- moderate weight loss with and without calcium supple- cium and other nutrients in moderating body fat in pre- mentation. Journal of Bone and Mineral Research, 16, school children. International Journal of Obesity and 141-147. Related Metabolic Disorders, 25, 559-566. Klesges, R. C., Harmon-Clayton, K., Ward, K. E., Kaufman, Cohen, A. J., & Roe, F. J. C. (2000). Review of risk factors for E. M., Haddock, K., Talcott, G. W., et al. (1999). Predic- osteoporosis with particular reference to a possible aetio- tors of milk consumption in a population of 17- to 35- logical role of dietary salt. Food and Chemical Toxicolo- year-old military personnel. Journal of the American gy, 38, 237-253. Dietetic Association, 99, 821-826. Davies, K. M., Heaney, R. P., Recker, R. R., Lappe, J. M., Barger- Krebs, M. F. (2001). Bioavailability of dietary supplements and Lux, M. J., Rafferty, K., et al. (2000). Calcium intake and impact of physiologic state: Infants, children and adoles- body weight. Journal of Clinical Endocrinology & Metab- cents. Journal of Nutrition, 131, 1351S-1354S. olism, 85, 4635-4638. Maillet, J., & Young, E. A. (1998). Position of the American Fleet, J. C., & Cashman, K. D. (2001). Magnesium. In B. A. Dietetic Association: Nutrition education for health care Bowman & R. M. Russell (Eds.), Present knowledge in professionals. Journal of the American Dietetic Associa- nutrition (8th ed.). Washington, DC: ISLI Press. tion, 98, 343-346. Fogelholm, M., Sievanen, H., Heinonen, A., Virtanen, M., Uusi- Mann, J. (2001). Carbohydrates. In B. A. Bowman & R. M. Rasi, K., Pasanen, M., et al. (1997). Association between Russell (Eds.), Present knowledge in nutrition (8th ed., weight cycling history and bone mineral density in pre- pp. 59-71). Washington, DC: ISLI Press. menopausal women. Osteoporosis International, 7, 354- Matkovic, V. (1996). Nutrition, genetics and skeletal develop- 358. ment. Journal of the American College of Nutrition, 15, Groff, J. L., & Gropper, S. S. (2000). Advanced nutrition and 556-569. human metabolism (3rd ed.) Belmont, CA: Wadsworth McCance, K. L., & Huether, S. E. (1998). Pathophysiology: The Thomson Learning. biologic basis for disease in adults and children (3rd ed.). Hall, W. D., Pettinger, M., Oberman, A., Watts, N. B., Johnson, St. Louis, MO: Mosby. K. C., Paskett, E. D., et al. (2001). Risk factors for kidney McMahan, S., South, C., & Crespin, S. (2002). Lactose intoler- stones in older women in the southern United States. ance: Strategies for symptom management. Advance for American Journal of Medical Science, 322, 12-18. Nurse Practitioners, 10, 71-74. Harris, S. S. (1998). Effects of caffeine consumption on hip frac- Miller, G. D., Jarvis, J. K., & McBean, L. D. (2001). The impor- ture, bone density and calcium retention. In P. Burck- tance of meeting calcium needs with foods. Journal of the hardt, B. Dawson-Hughes, & R. P. Heaney (Eds.), Nutri- American College of Nutrition, 20, 168S-185S. tional aspects of osteoporosis (pp. 163-171). New York: Need, A. G., Kemp, A., Giles, N., Morris, H. A., Horowitz, M., Springer-Verlag. & Nordin, B. E. (2002). Relationships between intestinal Hasling, C. (1992). Calcium metabolism in postmenopausal calcium absorption, serum vitamin D metabolites and osteoporotic women is determined by dietary calcium and smoking in postmenopausal women. Osteoporosis Inter- coffee intake. Journal of Nutrition, 122, 1119-1126. national, 13, 83-88. Heaney, R. P. (1999). Absorbing calcium [editorial]. Clinical New, S. A., Robins, S. P., & Reid, D. M. (1998). Fruit and veg- Chemistry, 45, 161-162. etable consumption and bone health: Is there a link? In P. Heaney, R. P., Abrams, S., Dawson-Hughes, B., Looker, A., Burckhardt, B. Dawson-Hughes, & R. P. Heaney (Eds.), Marcus, R., Matkovic, V., et al. (2000). Peak bone mass. Nutritional aspects of osteoporosis (pp. 199-207). New Osteoporosis International, 11, 985-1009. York: Springer. Heaney, R. P., Dowell, M. S., Rafferty, K., & Bierman, J. (2000). Nielsen, F. H. (2001). Boron, manganese, molybdenum, and Bioavailability of the calcium in fortified soy imitation other trace elements. In B. A. Bowman & R. M. Russell milk, with some observations on method. American Jour- (Eds.), Present knowledge in nutrition (8th ed.). Washing- nal of Clinical Nutrition, 71, 1166-1169. ton, DC: ISLI Press. Heaney, R. P., Dowell, S. D., Bierman, J., Hale, C. A., & Ben- NIH Consensus Conference. Optimal Calcium Intake. (1994). dich, A. (2001). Absorbability and cost effectiveness in NIH Consensus Development Panel on Optimal Calcium calcium supplementation. Journal of the American Col- Intake. Journal of the American Medical Association, lege of Nutrition, 20, 239-246. 272(24), 1942-1948. Heaney, R. P., & Rafferty, K. (2001). Carbonated beverages and Okano, T. (1996). Effects of essential trace elements on bone urinary calcium excretion. American Journal of Clinical turnover in relation to osteoporosis. Nippon Rinsho, 54, Nutrition, 74, 343-347. 148. Heaney, R. P., & Weaver, C. M. (1995). Effect of psyllium on Parker, S. H. (2000). Nutrition, weight, and body image. In absorption of co-ingested calcium. Journal of the Ameri- M. B. Goldman & M. D. Hatch (Eds.), Women & health can Geriatric Society, 43, 261-263. (pp. 578-588). San Diego, CA: Academic Press. Hergenroeder, A. C. (1995). Bone mineralization, hypothalamic Pattanaungkul, S., Riggs, B. L., Yergey, A. L., Vieira, N. E., amenorrhea, and sex steroid therapy in female adolescents O’Fallon, W. M., & Khosla, S. (2000). Relationship of and young adults. Journal of Pediatrics, 125, 683-689. intestinal calcium absorption to 1,25-dihydroxyvitamin D

32 JOGNN Volume 33, Number 1 [1,25(OH)2D] in young versus elderly women: Evidence Utermohlen, V. (2000). Diet, nutrition, and drug interactions. In for age-related intestinal resistance to 1,25(OH)2D action. M. E. Sils, J. A. Olson, M. Shike, & A. C. Ross (Eds.), Journal of Clinical Endocrinology and Metabolism, 85, Modern nutrition in health and disease (9th ed., pp. 1619- 4023-4027. 1641). Philadelphia: Lippincott Williams & Wilkins. Ricci, T. A., Heymsfield, S. B., Pierson, R. N. Jr., Stahl, T., van den Heuvel, E., Muys, T., van Dokkum, W., & Schaafsma, Chowdhury, H. A., & Shapses, S. A. (2001). Moderate G. (1999). Oligofructose stimulates calcium absorption in energy restriction increases bone resorption in obese post- adolescents. American Journal of Clinical Nutrition, menopausal women. American Journal of Clinical Nutri- 69(3), 544-548. tion, 73, 347-352. Weaver, C. (2001). Calcium. In B. A. Bowman & R. M. Russell Sacks, F. M., Appel, L. J., Moore, T. J., Obarzanek, E., Vollmer, (Eds.), Present knowledge in nutrition (8th ed.). Washing- W. M., Svetkey, L. P., et al. (1999). A dietary approach to ton, DC: International Life Sciences Institute. prevent hypertension: A review of the Dietary Approach- Weaver, C., & Heaney, R. P. (1999). Calcium. In M. E. Shils, es to Stop Hypertension (DASH) Study. Clinical Cardiol- J. A. Olson, M. Shike, & A. C. Ross (Eds.), Modern nutri- ogy, 22, III6-10. tion in health and disease (9th ed.). Philadelphia: Lippin- Salamone, L. M., Cauley, J. A., Black, D. M., Simkin-Silverman, cott Williams & Wilkins. L., Lang, W., Gregg, E., et al. (1999). Effect of lifestyle Weaver, C. M., & Heaney, R. P. (2001). Dairy consumption and intervention on bone mineral density in premenopausal bone health. American Journal of Clinical Nutrition, 73, women: A randomized trial. American Journal of Clinical 660-661. Nutrition, 70, 97-103. Whitney, E. N., Cataldo, C. B., & Rolfes, S. R. (1998). Under- Salih, M. A., Sims, S. H., & Kalu, D. N. (1996). Putative intes- standing normal and clinical nutrition (5th ed.). Belmont, tinal estrogen receptor: Evidence for regional differences. CA: West/Wadsworth. Molecular and Cellular Endocrinology, 121, 47-55. Wolf, R. L., Cauley, J. A., Baker, C. E., Ferrell, R. E., Charron, Schaafsma, A., De Vries, P. J. F., & Saris, W. H. M. (2001). M., Caggiula, A. W., et al. (2000). Factors associated with Delay of natural bone loss by higher intakes of specific calcium absorption efficiency in pre- and perimenopausal minerals and vitamins. Critical Reviews in Food Science women. American Journal of Clinical Nutrition, 72, 466- and Nutrition, 41, 225-249. 471. Shapses, S. A., Von Thun, N. L., Heymsfield, S. B., Ricci, T. A., Wyshak, G. (2000). Teenaged girls, carbonated beverage con- Ospina, M., Pierson, R. N. Jr., et al. (2001). Bone sumption, and bone fractures. Archives of Pediatrics and turnover and density in obese premenopausal women dur- Adolescent Medicine, 154, 610-613. ing moderate weight loss and calcium supplementation. Journal of Bone and Mineral Research, 16, 1329-1336. Story, M., & Alton, I. (1996). Adolescent nutrition: Current Jane H. Kass-Wolff, RN, MS, is a doctoral candidate in trends and critical issues. Topics in Clinical Nutrition, 11, women’s health at The University of Texas at Austin School of 56-69. Nursing and a faculty associate at The University of Texas Swaminathan, R. (1999). Nutritional factors in osteoporosis. Southwestern Medical Center, Department of Obstetrics and International Journal of Clinical Practice, 53, 540-548. Gynecology, Dallas. Thys-Jacobs, S., Starkey, P., Bernstein, D., & Tian, J. (1998). Calcium carbonate and the premenstrual syndrome: Effects on premenstrual and menstrual symptoms. Pre- Address for correspondence: Jane H. Kass-Wolff, RN, MS, menstrual Syndrome Study Group. American Journal of Department of Obstetrics & Gynecology, The University of Obstetrics and Gynecology, 179, 444-452. Texas Southwestern Medical Center, 5323 Harry Hines Boule- Tufts University. (2001). Men and osteoporosis: Red flags that vard, Dallas, TX 75390-9032. E-mail: jane.kass-wolff@ are often overlooked. Tufts University Health & Nutri- utsouthwestern.edu. tion Letter, 19, 1.

January/February 2004 JOGNN 33 PRINCIPLES & PRACTICE

The Future of Professional Education in Natural Family Planning Richard J. Fehring

Nurses and other health care professionals often Mosher, 1998). Women are reluctant to use NFP have little knowledge of methods of natural family methods for family planning because of incompati- planning (NFP) and do not readily prescribe natural ble lifestyles, personal choice, lack of knowledge, methods for their patients. One reason for this is that lack of access, perceptions of ineffectiveness, and little or no information on NFP is provided in nursing difficulty of use (Fehring, 1995). Another reason is or medical schools. The holistic, informational, and that persons in influential positions (for example, integrative nature of NFP fits well with professional physicians and nurses) have little knowledge of NFP nursing practice. A university online distance educa- and do not promote or trust the use of NFP as a tion NFP teacher training program, which offers aca- means of child spacing (Fehring, Hanson, & Stan- demic credit and includes theory, practice, and the lat- ford, 2001). This article provides a brief overview of est developments in fertility monitoring, has been NFP methods and health professionals’ knowledge developed for health care professionals. Professional and use of NFP, defines professional NFP education, NFP services in the United States need to meet world- describes a for-credit distance education NFP wide standards and include documenting and assess- teacher training program in a college of nursing, and ing pregnancy outcomes, tailoring NFP services to the offers a futuristic view of NFP education and service client or couple, and simplifying them for ease of use through the lens of recent NFP research. in a standard health care practice. JOGNN, 33, 34- 43; 2004. DOI: 10.1177/0884217503258549 Methods of NFP Keywords: Fertility awareness education—Nat- ural family planning—Reproductive health programs Four general methods of NFP are used and taught in the United States. The calendar rhythm and basal Accepted: December 2002 body temperature (BBT) methods are considered to be old methods, whereas the two so-called Modern methods of natural family planning modern methods are referred to as the ovulation (NFP) (such as the ovulation method and the sympto- method (OM or cervical mucus only) and the sympto- thermal method) have been taught in the United thermal method (STM). The modern methods also States for more than 30 years. Effectiveness studies are sometimes referred to as single and multiple indi- of modern methods of NFP have confirmed that cator methods. when used correctly they are effective in helping The calendar rhythm methods were developed in motivated couples to space pregnancy (correct use the 1920s and early 1930s and entail using a simple effectiveness rates vary from 97% to 99%, Trussell, mathematical formula that requires knowledge of 1998); however, very few women in the United the longest and shortest menstrual cycle over the States (less than 3% of women between the ages of past 6 to 12 months. The perceived ineffectiveness of 15 and 44) use natural methods as a means of fami- the calendar methods is largely based on myth and ly planning (Fehring & Schlidt, 2001; Hatcher et al., not on systematic research. Modern variations of the 1998; Howard & Stanford, 1999; Piccinino & calendar methods have recently been developed that

34 JOGNN Volume 33, Number 1 stipulate a fixed number of days of fertility in the men- double-check STM with a single-check STM found a strual cycle (e.g., days 8-19) and the use of a simple bead- 2.6% unintended pregnancy rate with the double-check counting system to help women track their cycles. A and an 8.5% unintended pregnancy rate with the single- recent study of 478 women users of the standard days check method (Freundl, 1999). The double-check method method of NFP from three countries (Bolivia, Peru, and involves use of a calendar day formula and the observa- the Philippines) indicated that the fixed day method had tion of cervical mucus to determine the beginning of the a cumulative probability of pregnancy of 4.75% with cor- fertile period and two biological markers to determine the rect use and an 11.96% probability of pregnancy with end of the fertile phase (i.e., the peak in cervical mucus typical use (Arevalo, Jennings, & Sinai, 2002). and temperature changes). The single-check method uses Since the early 20th century, it has been known that a one biological indicator (cervical mucus) to determine the woman’s body temperature elevates after ovulation. That beginning of the fertile period and one indicator (temper- knowledge of this natural marker of fertility has been ature) to determine the end of the fertile period. used since the 1930s as a method of NFP alone or in com- The 21st century has brought new technology for use bination with calendar formulas. In the first prospective in natural methods of family planning. Women in Europe effectiveness study of BBT, reported in 1968, 502 couples now have available the Persona (Unipath, Bedford, UK), had a typical use effectiveness of 6.6 pregnancies per 100 a handheld fertility device, to track the fertile and infertile woman-years when intercourse was confined to the post- phases of the menstrual cycle by monitoring urinary BBT shift period (after the postovulatory rise in body tem- metabolites of estrogen and luteinizing hormone. The perature) and 19.3 pregnancies when intercourse method pregnancy rate of a prototype of the Persona occurred in both the pre- and postovulatory phases of the among 710 volunteer European women was 12.1% but cycle (Marshall, 1968). Correct use of BBT only as a decreased to 6.2% after a change in the algorithm built postovulatory method will result in a method effective- into the monitor (Bonnar, Flynn, & Freundl, 1999). Per- ness of close to 99% (Hatcher et al., 1998). Researchers sona is not available in the United States, although a sim- have studied the use of the male partner’s basal body tem- ilar handheld device (the Clearplan Easy Fertility Moni- perature concomitantly with the woman’s as a means to tor, Unipath Diagnostics Inc., Waltham, MA) is available determine prospectively the postovulatory time of the and measures metabolites of estrogen and luteinizing hor- cycle (Dunlop, Allen, & Frank, 2001; Frank & White, mone. This device is used to achieve pregnancy. 1996). Researchers at Marquette University College of Nursing Both the single indicator, mucus-only methods, and the are currently investigating the effectiveness of the use of multiple indicator, sympto-thermal methods, were devel- the Clearplan monitor as an aid to learning and using oped in the last half of the 20th century. Single indicator NFP to avoid pregnancy with other natural indicators methods use the cyclical estrogenic changes of cervical (i.e., cervical mucus and BBT). mucus to determine the beginning, peak, and end of the fertile phase of the menstrual cycle. A five-country World Health Organization (WHO) study (1981) of 725 ovulation method users yielded a method-related pregnancy ew health care professionals have in-depth rate of 2.2% and a typical use pregnancy rate of 22.3%, F of which 15.4% was due to conscious departure from the knowledge, appreciation, and understanding rules. There are a number of variants of the single indica- of natural family planning. tor cervical mucus method, including a standardized form known as the Creighton Model (CrM) system and a simplified version, the Modified Mucus method. Researchers are investigating the effectiveness of a simple 2-day algo- Knowledge and Use of NFP rithm for the mucus-only system (2 consecutive dry days Among Health Care Professionals without mucus indicates an infertile state) in avoiding pregnancy (Jennings & Sinai, 2001; Sinai, Jennings, & A number of studies have documented the knowledge Arevalo, 1999). and use of NFP by health care professionals. Snowden, The combination of several natural indicators of fertil- Kennedy, and Leon (1988) interviewed 375 physicians ity, including cervical mucus, BBT shift, calendar formu- from four developing countries (Mauritius, Peru, the las, and cervical changes, are used in the various forms of Philippines, and Sri Lanka) about their knowledge of the sympto-thermal methods (STMs). There are only a what they called periodic abstinence and found that most few comparative studies on NFP effectiveness. Some con- lacked detailed knowledge of NFP methods and did not sider the STM to be more effective when used to avoid prescribe them in practice. Doring, Baur, and Frank- pregnancy than the single-indicator mucus method (Kam- Herrmann (1990) conducted telephone interviews of 229 bic, 2000). A recent European study that compared a general practitioners and 237 gynecologists from Ger-

January/February 2004 JOGNN 35 many and discovered that only 6% of them prescribed ability of pregnancy are also important to the use and NFP as the main method of family planning and only understanding of NFP. The philosophy of NFP includes 10% recommended the NFP method. One hundred twen- understanding the meaning of the human person, human ty-one Italian family practice physicians responded to a relationships, human sexuality, and the transmission of questionnaire on the use of contraception and NFP in a life. The art of NFP is complex and involves developing study by Girotto et al. (1997). Findings indicated that effective and efficient systems of NFP service. Systems of more than 50% of the physicians knew little about NFP NFP include charting and documentation systems, educa- methods, 91.8% never or rarely recommended them, and tional materials, and teaching pedagogy. Other topics only 8% would prescribe NFP for their patients. Stan- required to understand and provide professional NFP ford, Thurman, and Lemaire (1999) obtained a mailed services are sexual ethics, family dynamics, psychological survey response rate of 547 of 840 (65%) from random- aspects of family planning, teaching methods, adult edu- ly selected State of Missouri family practice, general prac- cation principles, and program management. tice, and internal medicine physicians and obstetrician- gynecologists and found that only 10% of them offered NFP as a viable option to patients. Two studies investigated the knowledge and use of NFP The core of professional natural family among nurses. Fehring (1995) surveyed 118 perinatal planning (NFP) practice includes decision nurses and 48 physicians about their knowledge and use of NFP. Fifty-three percent of the nurses and 44% of the making, documenting, and integrating NFP physicians would not advise the use of NFP to avoid preg- into women’s health care. nancy. The average amount of time that nurses and physicians were provided information about NFP in nursing or medical school was less than 1 hour. Finally, a study to determine the knowledge and use of NFP among a nationally Core Components of Professional NFP Services randomized sample of 514 certified nurse midwives found that the CNMs ranked NFP as the 9th most effective fam- The three core components of professional NFP servic- ily planning method used in their practice, with an aver- es are NFP decision making, professional documentation, age perceived method effectiveness of 88% and use effec- and integration of NFP services into women’s health care tiveness of 70% (Fehring et al., 2001). The majority of (see Figure 1). NFP decision making includes assessing the the respondents (92%) felt minimally prepared by their client, couple, or NFP population of interest; determining educational program to provide NFP, yet 55% indicated the best NFP method for that individual or group; and that they could or would provide it on request. assessing the effectiveness of that method. NFP decision After reviewing health care providers’ lack of prepara- making also includes determining the appropriate teach- tion in NFP, Fehring (1995) recommended that profes- ing methods and educational materials and assessing sional natural family planning teacher training programs behavioral, ethical, and spiritual concerns. be offered in nursing and medical schools. Natural fami- Professional documentation in delivering NFP services, ly planning teacher training is a good fit for professional at a minimum, includes registration and initial assess- nursing education in that NFP is holistic, behavioral, and ment, follow-up, pregnancy evaluation, and discontinua- educational in nature. Furthermore, researchers have tion of NFP (Gray & Kambic, 1984). NFP follow-up demonstrated that when NFP is presented in a positive involves assessing and documenting the accuracy and light to women patients by health care providers, as many completeness of charting, the client’s understanding of as 43% would be interested in using NFP to avoid or instructions for achieving or avoiding pregnancy, the achieve pregnancy (Stanford, Lemaire, & Fox, 1994; management of special circumstances (such as a mother Stanford, Lemaire, & Thurman, 1998). who is breastfeeding and a woman who is coming off of hormonal contraception), the client’s intention of use, and determination of satisfaction and autonomy. Pregnancy What Is Professional Education in NFP? evaluation and documentation involves assessing the NFP Contemporary education in NFP is complex and chart, determining the day of conception, assessing involves science, philosophy, and art. The basic compo- whether the pregnancy was intended or not, and deter- nents of NFP science are the physiological understanding mining whether the pregnancy was a result of method of natural biological markers of fertility, the accuracy of failure or use failure and why. Data management and those markers in relation to the day of ovulation, and the quality control measures are also important components effectiveness of biological markers in helping couples to of a professional NFP teacher-training program. achieve and avoid pregnancy. An understanding of the Health care professionals and other providers of NFP statistical parameters of the menstrual cycle and the prob- services also integrate the use of NFP into women’s health

36 JOGNN Volume 33, Number 1 not use, prescribe, or refer clients for contraception. The unmarried student also would be required to be sexually celibate and a philosophical supporter of NFP. Professional NFP Practice In the United States, there are a number of approaches to obtaining NFP teacher training. These include 1- to 4- day workshops, extensive continuing education training NFP Decision Making Documentation programs that include a supervised practice, and a NFP method that fits the - assessment client/couple university-based program that can be taken for academic - follow-up Teaching materials credit. The USCCB lists 18 local, regional, and national - pregnancy evaluation Teaching methods programs that offer NFP teacher training and meet - discontinuation Data management USCCB standards. These programs are not specifically Quality assessment intended for health care professionals and often include Integrating NFP into Program management nonprofessional participants. The AAFCP has nine edu- Ethical concerns women’s health care cational programs that have met academy accreditation standards. The largest of these is the Pope Paul VI Insti- tute for the Study of Human Reproduction educational FIGURE 1 program that is cosponsored by the Creighton University Core competencies of professional NFP practice. School of Medicine. The Couple to Couple League International (CCL), a concerns. Just learning about male and female human private, family-oriented support organization, provides a reproduction and gaining an awareness of the fertile and workshop that is specifically for health care professionals infertile times of a cycle is a health benefit. Variations but not a teacher-training program. The workshop intro- from normal cyclical patterns can indicate potential duces participants to the sympto-thermal approach to health problems, such as unusual bleeding, cervical or NFP. Married health care professionals can take the CCL vaginal infections, polycystic ovaries, and infertility. NFP teacher training program in person or through distance providers aid breastfeeding women through times of education. Only married couples are trained as CCL uncertain fertility and support them in proper breastfeed- teachers because the developers of the CCL program ing practices. Understanding menstrual cycle patterns in believed that the “couples teaching couples” method was special circumstances such as the early phases after dis- the best means of providing information about NFP and continuing hormonal contraception and during the peri- related issues such as breastfeeding. The Billings Ovula- menopause are concerns and a part of NFP practice. Pro- tion Method Association provides NFP teacher-training fessional nurse NFP teachers conduct functional pattern programs for those interested in teaching the Billings assessments to identify lifestyle patterns that might affect Ovulation Method. Other larger teacher training pro- the menstrual cycle and fertility. grams include the Family of the Americas Foundation (for the ovulation method) and Northwest Family Services NFP Educational Standards (for the STM). See Table 1 for a listing of NFP teacher- training programs and Web site addresses. A professional NFP education program should meet One of the most extensive NFP teacher-training pro- established standards. Currently there are two organiza- grams is offered by the Pope Paul VI Institute for the tions that provide standards for NFP teacher training pro- Study of Human Reproduction in affiliation with the grams, the American Academy of Fertility Care Profes- Creighton University School of Medicine Division of sionals (AAFCP) and the Diocesan Development Program Continuing Medical Education. This program lasts for 13 (DDP) for Natural Family Planning of the United States months and includes two intensive, 7-day, in-person edu- Catholic Conference of Bishops (USCCB) (DDP, 2000). cational phases and two supervised practica with a The standards for the AAFCP are specific for the CrM required onsite visit. Prescribing health professionals, system of NFP (Barron & Daly, 2001). The USCCB stan- including physicians, nurse practitioners, pharmacists, dards are more generic and include faith-based criteria. In and nurse midwives, can also integrate a medical consult- general, the standards from both organizations cover the ant program into this coursework. The Creighton Univer- need for a written and approved curriculum, goals and sity program covers primarily the intricacies of teaching objectives, minimum content, qualified faculty, appropri- the CrM system of NFP. The CrM is a standardized form ate facilities and support systems (e.g., library facilities), of the ovulation method of NFP (Barron & Daly, 2001). an ongoing evaluation of the training program (including The medical consultant course includes the integration of its content, faculty, and students), and adherence to a NFP with women’s health problems, which is called code of ethics. The code of ethics for the AAFCP is the NaProTechnology (Pope Paul VI Institute for the Study of most controversial standard, requiring that a participant Human Reproduction, Omaha, NE).

January/February 2004 JOGNN 37 teacher training program prepares the participant to pro- TABLE 1 vide professional NFP services and to qualify for certifi- Natural Family Planning Teacher Training cation through the Diocesan Development Program for Programs NFP (a program of the USCCB). This educational offer- Billings Ovulation Method Association – USA (BOMA) ing is designed for health care professionals and involves NFP Teacher Training Program a two-course sequence that includes a three-credit NFP http://www.boma-usa.org/ theory course and a three-credit NFP supervised practicum. Both courses can be taken for undergraduate Couple to Couple League International (CCL) or graduate credit. The program was developed to meet Natural Family Planning Teacher Training http://www.ccli.org/teach/index.shtmlh the needs of nurses who wished to provide NFP services but who were unable to attend programs. Family of the Americas Foundation (FAF) The three-credit NFP theory course is taught in nine Natural Family Planning Master Teacher Training Program modules that cover NFP history, anatomy and physiology, http://www.familyplanning.net/index-aboutus.html scientific foundations, fertility indicators, sexual ethics, family dynamics, adult teaching principles, program man- Marquette University College of Nursing NFP Teacher Training Program agement, and other topics (see Table 2). The course is http://www.mu.edu/nursing/nfp/training.html offered in the Blackboard online platform (Blackboard, Inc., Washington, DC) and includes chat rooms, slide Northwest Family Services media for lectures, profiles of each student and faculty, Certification Program in NFP and online testing. Guest faculty, including NFP medical http://www.nwfs.org/index.t?goto=nfp consultants (both family medicine and obstetrics) and The Pope Paul VI Reproductive Institute clergy consultants, are present through synchronous and FertilityCare Allied Health Education Programs asynchronous discussion rooms. Students have numerous http://www.mitec.net/~popepaul/Education1.htm written requirements that include creating NFP brochures; writing papers on scientific developments; U. S. Conference of Catholic Bishops charting fertility indicators; summarizing church docu- Department of Natural Family Planning NFP Teacher Training Program Annotated Directory ments; and developing a parish-, college-, or hospital- http://www.usccb.org/prolife/issues/nfp/trainer.htm based NFP service program, with a plan for marketing NFP services. Online participation in weekly discussions is required and is integral to the course. The Future of Professional Education in NFP The three-credit NFP practice course uses a case-study approach to the application of NFP theory and teaching Access to the Internet and Internet-based education is skills. Students are assigned a personal preceptor and are growing exponentially in the United States and the world. required to teach a minimum of 10 new clients and pre- According to the U.S. Department of Commerce, as of sent online case studies. (See Table 3 for an example case 2002, more than 50% of U.S. households had access to the Internet. Each month, approximately 2,000 more people connect to the Internet. Phoenix University serves more than 100,000 students and offers more than 100 he future of professional education in (graduate and undergraduate) degree programs through T online courses. Penn State University started an online natural family planning will include online course offering in 1998 with 48 students, and today more training of teachers and couples. than 1,600 students are enrolled in the university’s online courses (Hons, 2002). Experts have estimated that approximately 6,000 accredited courses are offered online at more than 84% of U.S. 4-year institutions of study used in the course.) In addition to learning to pro- higher education (Cuellar, 2002). More than 2 million vide professional NFP services through group teaching students were enrolled in online courses in 2002 (Cuellar, sessions and individual follow-up sessions, the students 2002). become familiar with documentation, evaluation, and In the 2001–2002 academic year, Marquette Universi- data management. The emphasis of the online practice ty College of Nursing introduced the first professional, course is on case presentations and problem management. online, for-credit NFP teacher-training program based on The case examples presented are about special circum- the standards of the USCCB. Providing an NFP teacher- stances (such as women who are weaning their babies training program fits well within the Catholic Jesuit mis- from breastfeeding and are not menstruating), and stu- sion of the university. The Marquette University NFP dents, guest faculty, and seasoned NFP teachers provide

38 JOGNN Volume 33, Number 1 TABLE 2 Marquette University Online NFP Teacher Training Program Modules

Theory Module Clinical Session Module Module 1: Introduction and History Teaching the Marquette Model Module 2: Anatomy and Physiology NFP Documentation and Follow-up Module 3: Charting Signs of Fertility NFP Evaluation and Quality Control Module 4: Special Circumstances Case Management Module 5: Women’s Health Breastfeeding/Post Hormonal Cycles Module 6: Church Teaching Perimenopause & Stress Module 7: Marriage & Family Infertility and NFP Module 8: Professional Teaching Women’s Health Problems and NFP Module 9: Program Management Behavioral & Spiritual Problems feedback. Students and faculty also post interesting and strual cycle to 6 days. This includes the day of ovulation complex cases online for feedback throughout the course. and the 5 days before (based on evidence that sperm live All of the materials for the course are in digital format from 3 to 5 days). Others have confirmed that the most and are provided to the student in the online course media fertile days of the menstrual cycle are the 2 days before room, where files can be downloaded, viewed, and ovulation (Dunson, Baird, Wilcox, & Weinberg, 1999). copied. Larger files are provided to the students in the This research will help NFP educational programs to form of a CD. The students are provided with a digital focus on using natural fertility indicators to clearly define copy of all the necessary material to teach couples NFP, the beginning, peak, and end of the window of fertility such as an NFP user manual, documentation forms, and to help couples and clients to accurately pinpoint the example and blank charts, and slides for group teaching days to achieve and to avoid pregnancy. sessions. All of the provided materials are in digital for- A number of effectiveness studies of NFP systems in mat and can easily be modified to fit the individual needs the past few years have been published. They have con- of the student and the various populations served. firmed that when you have motivated couples, competent Although the Marquette University College of Nursing NFP teachers, and well-developed NFP service programs, NFP Teacher Training program is the only for-credit NFP methods can be very effective in helping couples to university-based program in the United States, there are both achieve and avoid pregnancy (Hilgers & Stanford, other university-based programs. The European General 1998; Howard & Stanford, 1999). However, very few Assembly (EGA) of the European Institute of Family Life studies on NFP effectiveness have been clinical trials with Education is currently assessing the need for a European comparison groups (Lamprecht & Trussell, 1997). Adher- certification of NFP teacher training programs. Their pre- ence to NFP method instruction and spousal support are liminary work with European parliamentarians has estab- key factors in high effectiveness rates (Tommaselli, Guida, lished that they need to address two important issues: & Palomba, 2000). There is also the realization that the One is to establish the minimum curriculum content for older calendar methods of NFP might be more effective NFP teacher training programs and the other is to inte- than was previously thought (Kambic, 2000). Compara- grate these courses into the European universities. There tive studies of the effectiveness of the different methods of currently are NFP courses in German, Spanish, Italian, NFP need to be conducted. Educational programs have and English universities. Members of the EGA have iter- the effectiveness rates for both achieving and avoiding ated that university-based programs would bring credibil- pregnancy and can provide effectiveness standards to stu- ity to NFP. Furthermore, the discussion in European pro- dents to use in evaluating their own NFP services. grams includes the incorporation of NFP teacher training Both high and low technology in fertility monitoring into university-based nursing programs. are helping to change professional education in NFP. The development of electronic fertility monitors that have the Future Directions From Research ability to measure urinary metabolites of estrogen, Research on the topic of NFP and related areas in the luteinizing hormone, and progesterone is helping to nar- past 5 years can give direction and reveal needs for pro- row the (self-monitored) window of fertility and provide fessional education in NFP. Studies by Wilcox, Weinberg, for the direct measurement of female hormones (Behre, and Baird, and Weinberg (1995) have helped to define Kuhlage, & Gassner, 2000; Bonner et al., 1999). Some of and narrow the window of fertility in a woman’s men- these devices are easy to use and do not have the vari-

January/February 2004 JOGNN 39 Sinai et al., 1999). As NFP methods become simpler to TABLE 3 teach, they can more readily be incorporated into profes- NFP Case Study: Breast Cancer and Tamoxifen sional practice. Background data: Although only a few psychological studies of NFP have The wife is 35 years old and the husband 38. They have been conducted, findings from them can affect profes- been married for 10 years. Both are Roman Catholic. She sional NFP education. Study results have shown that has used oral hormonal contraception on and off since she when women are provided with information about NFP was 18. He is an insurance agent; she is a homemaker. in a positive light, as many as 40% have an interest in its use (Stanford et al., 1998). Studies of German NFP users Reproductive health data: She has had three pregnancies, which have resulted in three found that they use NFP because it is safe, provides living children, a girl 9 years old, and two boys, one 5 and women with the power of information, and stimulates the other 3. She was diagnosed with breast cancer in 1999, sexual desire (den Tonkelaar & Oddens, 2001; Oddens, was treated with breast removal surgery and started on 1999). Because many women are fearful of pregnancy and tamoxifen. She will be on the medication for the next 5 some couples have difficulty with abstinence, NFP educa- years and has been told that under no circumstances is she to become pregnant. The couple refused to be sterilized for tional and service programs could be recommended for religious and ethical reasons. They were referred to the counseling couples in those areas. Little research exists on Marquette University College of Nursing Institute for NFP how methods of family planning, particularly NFP, affect to learn the Marquette Model of NFP that incorporates the marital and nonmarital relationships. use of the Clearplan Easy Fertility Monitor as an aid to One area of need in professional NFP education is learning NFP. research on pedagogy and the integration of technology. Problem: Research on the best way of providing distance education Tamoxifen has an anti-estrogenic effect and will complicate in NFP is a need for both the professional NFP teacher the mucus sign, that is, cervical mucus is a result of a and for the couple user. In some areas of the United response by endocervical cells to the rising levels of estro- States, there might be only one professional NFP teacher gen in the secretory phase of the menstrual cycle. for an entire diocese, city, or even state. Distance educa- Solution: tion programs to train professional NFP teachers and dis- Use Clearplan monitor as an aid to learning NFP and to tance couple training programs are needed. University- help establish the fertile phase of her menstrual cycles. based schools of nursing would be the best places to Establish basic infertile pattern of nonchanging mucus. Use develop and house such educational programs. yellow color for unchanging pattern post-Clearplan peak and ignore the mucus variability. Implications for Nursing 6-Month Follow-up Outcome: Prolonged confusing mucus pattern continues—but the Current NFP delivery systems are often NFP teacher peak in cervical mucus correlates with the high readings of and user intensive. Such NFP delivery systems usually the Clearplan monitor. Couple expressed satisfaction and entail introductory sessions that last an hour or more and confidence in their family planning method and the ability to identify a fertile window. individual follow-up sessions at monthly intervals for as long as 6 months (and sometimes longer). In today’s fast- The downloaded data from the monitor is illustrated in Fig- paced information age society, however, couples are often ure 2. It shows the variability of the fertile window and the no longer willing or able to attend extensive educational number of test strips used to monitor this variability. As can sessions to learn how to use NFP. A professional NFP be seen in Figure 2, the seven menstrual cycles ranged in length from 27 to 42 days. The monitor was able to pick teacher may be the lone person trying to deliver services up these changing lengths and the variability of the fertile to a large area. Telemedicine and telehealth are options window. The couple has used the Clearplan Easy Fertility that can be used in such situations. Nurse researchers at Monitor successfully for more than 3 years as an aid to Marquette University are currently developing a tele- NFP and to avoid pregnancy. health system of NFP services, which couples will be able to access on the Internet to learn NFP, obtain and down- load charts and users’ manuals, and receive online feed- ability that is found with temperature and cervical mucus back from health care professionals. monitoring. New algorithms for calendar rhythm, such as Another need is for simplified teaching and delivery of the fixed day method (i.e., days 8-19 or days 9-19 of the NFP services. Patient encounters in health care practice menstrual cycle are the days of fertility) and the 2-day need to take place within a 20-minute time frame to be method, and concomitant use of simple monitoring cost-effective. Current NFP services are education-based devices such as beads are helping to simplify both the use and counseling-intensive and do not fit readily into sys- and the teaching of NFP (Burkhart, de Mazariegos, tems of short, episodic care. Arevalo (1997) suggested Salazar, & Lamprecht, 2000; Jennings & Sinai, 2001; that more user-friendly methods of NFP could be devel-

40 JOGNN Volume 33, Number 1 MARQUETTE UNIVERSITY INSTITUTE FOR NATURAL FAMILY PLANNING LAST 12 CYCLES SHORTEST_27__ LONGEST_40__ EARLIEST DAY OF PEAK IN LAST 6 CYCLES__12___ DATE FOR BEGINNING THIS CHART: ___June 19, 2000___

CYCLE DAY 1 2 3 4 5 6 7 8 910111213141516171819202122232425262728293031323334353637 38 39 40 Cyle 1 Date Clearplan Recording PP Intercourse = I II Cycle 2 Date 7 Clearplan Recording 6 PP Intercourse = I 5 IIIII Cycle 3 Date 4 Clearplan Recording 3 PP Intercourse = I2 II I I I Cycle 4 Date 1 Clearplan Recording PP Intercourse = I II Cycle 5 Date Clearplan Recording PP Intercourse = I II I II Cycle 6 Date Clearplan Recording PP Intercourse = I IIII I TO AVOID PREGNANCY: Do not have intercourse during fertility Clearplan Coding System: 1. Fertility BEGINS on day 7 during the first 6 cycles; After 6 cycles of charting Low Fertility = Green Color 2. Fertility BEGINS on the earliest day of Peak during the last 6 cycles minus 5 days High Fertility = Blue Color 3. Fertility ENDS on the last Peak day plus THREE full days; After 6 cycles of charting 4. Fertility ENDS on the last Peak day of the last 6 cycles plus 3 days Peak Fertility = Blue with a "P" 5. Do not have intercourse on any HIGH or PEAK reading on the monitor Menses = Red Color Couple Intention Recording:(Place a check next to your intention before beginning each cycle) MARQUETTE UNIVERSITY Cycle 1: Avoid__x___ Achieve_____ Cycle 2: Avoid__x___Achieve_____ Cycle 3: Avoid__x___ Achieve_____ Cycle 4: Avoid__x___Achieve_____ CPEFM SYSTEM Cycle 5: Avoid__x___ Achieve_____ Cycle 6: Avoid__x___Achieve_____ EXAMPLE CHART FIGURE 2 Seven cycles of fertility monitoring data. Note. Copyright by Marquette University. Reprinted with permission. oped by creating simplified versions of existing methods, strual cycle patterns and those with serious reasons to streamlining teaching approaches, and developing new avoid pregnancy. approaches and methods. Researchers at Georgetown A final way of simplifying and modernizing NFP serv- University Institute for Reproductive Health are currently ices would be to integrate the latest fertility monitoring investigating a number of simplified NFP methods, technology into NFP systems. Nurse researchers at Mar- including the standard day (fixed day system) and the 2- quette University are incorporating the use of the Clear- day algorithm. plan Easy Fertility Monitor as an aid to learning NFP and Delivery of NFP services could be placed in health care fertility awareness. The monitor is accurate, acceptable, and community settings that do not rely on brief encoun- simple to use, and its use can be beneficial to a couple’s ters. For example, NFP could be provided in a parish set- relationship (Severy, 2001). The professional user of the ting by a parish nurse. Catholic and evangelical parishes, monitor can also purchase a data transfer system that orthodox Jewish synagogues, and The Church of Jesus downloads information from the individual monitors Christ of Latter-day Saints are receptive communities in with a data transfer card. Professional providers of NFP which parish or congregation nurses could provide NFP services at Marquette University are finding that the mon- services to couples of reproductive age, to those involved itor can be of great help for couples with difficult cycles in marriage preparation, and chastity education to ado- who have serious reasons for avoiding pregnancy. (See lescents. Parish nurses could also train couples to provide Table 3 for an example using the ClearPlan Easy Fertility basic NFP education to other couples. This would give the Monitor and Figure 2 for cycle information for the case nurses more time to focus on couples with difficult men- study.)

January/February 2004 JOGNN 41 Conclusion of Germany in 1988. Geburtshilfe und Frauenheilkunde, 50, 43-48. NFP is a method of family planning that works with Dunlop, A. L., Allen, A. D., & Frank, E. (2001). Involving the nature by understanding it. It helps couples to integrate male partner for interpreting the basal body temperature and live with their fertility. The dynamics of using NFP graph. Obstetrics and Gynecology, 98, 133-138. may help to strengthen marital life. NFP requires that Dunson, D., Baird, D., Wilcox, A., & Weinberg, C. (1999). Day- women and couples be educated about their fertility and specific probabilities of clinical pregnancy based on two learn to monitor fertility as a health record. studies with imperfect measures of ovulation. Human From the time of Florence Nightingale, nursing has Reproduction, 14(7), 1835-1839. Fehring R. (1995). Physician and nurses knowledge and use of been known as a profession that helps individuals to work natural family planning. Linacre Quarterly, 62, 22-28. with nature rather than against it. Nursing involves help- Fehring, R., Hanson, L, & Stanford, J. (2001). Nurse-midwives’ ing to maintain and restore the integrity of the whole per- knowledge and promotion of lactational amenorrhea and son: body, mind, and spirit. Nursing is a profession that other natural family planning methods for child spacing. promotes health and educates individuals as to how to Journal of Midwifery & Women’s Health, 46(2), 68-73. maintain and achieve higher levels of well-being. The Fehring, R., & Schlidt, A. M. (2001). Trends in contraceptive nursing profession would and should be an ideal place for use among Catholics in the United States: 1988-1995. teacher training programs in NFP and for NFP service. Linacre Quarterly, 69(2), 170-185. Frank, E., & White, R. (1996). An updated basal body temperature method. Contraception, 54, 319-321. REFERENCES Freundl, G. (1999). European multicenter study of natural family planning (1989-1995): Efficacy and drop-out. Arevalo, M. (1997). Expanding the availability and improving Advances in Contraception, 15, 69-83. delivery of natural family planning services and fertility Girotto, S., Del Zotti, F., Baruchello, M., Gottardi, G., Valente, awareness education: Providers’ perspectives. Advances in M., Battaggia, A., et al.(1997). The behavior of Italian Contraception, 13(2/3), 275-281. family planning physicians regarding the health problems Arevalo, M., Jennings, V., & Sinai, I. (2002). Eficacy of a new of women and, in particular, family planning (both con- method of family planning: The Standard Days Method. traceptive and NFP). Advances in Contraception, 13, 283- Contraception, 65, 333-338. 293. Barron, M. L., & Daly, K. D. (2001). Expert in fertility appreci- Gray, R., & Kambic, R. (1984). NFP program evaluation and ation: The Creighton Model practitioner. Journal of Obstet- accountability. In D. Lanctot, M. Martin, & M. Shiv- ric, Gynecologic, and Neonatal Nursing, 30, 386-391. anandan (Eds.), Natural family planning, development of Behre, H. M., Kuhlage, J., & Gassner, C. (2000). Prediction of national programs. Washington, DC: IFFLP/FIDAF. ovulation by urinary hormone measurements with the Hatcher, R., Trussell, J., Stewart, F., Cates, W., Stewart, G., home use Clearplan Fertility Monitor: Comparison with Guest, F., et al. (1998). Contraceptive technology. New transvaginal ultrasound. Human Reproduction, 12, 2478- York: Ardent Media. 2482. Hilgers, T. W., & Stanford, J. B. (1998). Creighton model Bonnar, J., Flynn, A., Fruendl, G., Kirkman, R., Royston, R., & NaProEducation Technology for avoiding pregnancy: Use Snowden, R. (1999). Personal hormone monitoring for effectiveness. Journal of Reproductive Medicine, 43, 495- contraception. British Journal of Family Planning, 24, 502. 128-134. Hons, C. (2002, January). Big ten school in cyberspace—A brief Burkhart, M. C., de Mazariegos, L., Salazar, S., & Lamprecht, history of Penn State’s World Campus. T.H.E. Journal V. M. (2000). Effectiveness of a standard-rule method of (Technological Horizons in Education), pp. 27-29, 30-32. calendar rhythm among Mayan couples in Guatemala. Howard, M., & Stanford, J. B. (1999). Pregnancy probabilities International Family Planning Perspectives, 26, 131-136. during use of the Creighton Model fertility care system. Cuellar, N. (2002). Tips to increase success for teaching online. Archives of Family Medicine, 8, 391-402. CINPlus, 5(1), 1, 4-7. Jennings, V., & Sinai, I. (2001). Further analysis of the theoret- den Tonkelaar, I., & Oddens, B. J. (2001). Factors influencing ical effectiveness of the TwoDay method of family plan- women’s satisfaction with birth control methods. Euro- ning. Contraception, 64, 149-153. pean Journal of Contraception and Reproductive Health Kambic, R. (2000). The effectiveness of natural family planning. Care, 6, 153-158. Current Medical Research, 11, 11-16. Diocesan Development Program for Natural Family Planning. Lamprecht, V., & Trussell, J. (1997). Natural family planning (2000). National Conference of Catholic Bishops; Stan- effectiveness: Evaluating published reports. Advances in dards for diocesan natural family planning ministry (Pub- Contraception, 13, 155-165. lication #5-438). Washington, DC: U.S. Conference of Marshall, J. (1968). A field trial of the basal-body temperature Catholic Bishops. method of regulating births. Lancet, 2, 8-10. Doring, G., Baur, S., & Frank-Herrmann, P. (1990). Report on Oddens, B. J. (1999). Women’s satisfaction with birth control: A the results of a representative opinion poll among physi- population survey of physical and psychological effects of cians on the degree of knowledge about and attitudes oral contraceptives, intrauterine devices, condoms, natu- towards natural family planning in the Federal Republic

42 JOGNN Volume 33, Number 1 ral family planning, and sterilization among 1466 women. ural family planning programs. Gynecological Endocrinol- Contraception, 59, 277-286. ogy, 14, 81-89. Piccinino, L. J., & Mosher, W. E. (1998). Trends in contracep- Trussell, J. (1998). Contraceptive efficacy. In R. Hatcher, J. tive use in the United States. Family Planning Perspec- Trussell, F. Stewart, W. Cates, G. Stewart, F. Guest, et al. tives, 30, 4-10. (1998). Contraceptive technology. New York: Ardent Severy, L. J. (2001). Acceptability of home monitoring as an aid Media. to conception. The Journal of International Medical Wilcox, A. J., Weinberg, C. R., & Baird, D. (1995). Timing of Research, 29, 28A-34A. sexual intercourse in relation to ovulation. Effects on the Sinai, I., Jennings, V., & Arevalo, M. (1999). The Two Day probability of conception, survival of the pregnancy and Algorithm: A new algorithm to identify the fertile time of sex of the baby. New England Journal of Medicine, 333, the menstrual cycle. Contraception, 60, 65-70. 1517-1521. Snowden, R., Kennedy, K. I., & Leon, F. (1988). Physicians’ World Health Organization. (1981). A prospective multicentre views of periodic abstinence methods: A study in four trial of the ovulation method of natural family planning: countries. Studies in Family Planning, 19, 215-221. II. The effectiveness phase. Fertility & Sterility, 36(5), Stanford, J. B., Lemaire, J. C., & Fox, A. (1994). Interest in nat- 591-598. ural family planning among female family practice patients. Family Practice Research Journal, 14, 237-249. Stanford, J. B., Lemaire, J. C., & Thurman, P. B. (1998). Richard J. Fehring, DNSc, RN, is a professor in the College of Women’s interest in natural family planning. Journal of Nursing and director of the Institute for Natural Family Plan- Family Practice, 46, 65-71. ning, Marquette University, Milwaukee, WI. Stanford, J. B., Thurman, P. B., & Lemaire, J. S. (1999). Physi- cians’ knowledge and practice regarding natural family planning. Obstetrics and Gynecology, 94, 672-678. Address for correspondence: Richard J. Fehring, DNSc, RN, Tommaselli, G. A., Guida, M., & Palomba, S. (2000). The College of Nursing, Marquette University, P.O. Box 1881, Mil- importance of user-compliance on the effectiveness of nat- waukee, WI 53201-1881. E-mail: richard.fehring@marquette.edu.

January/February 2004 JOGNN 43 CLINICAL RESEARCH

A Model for the HELLP Syndrome: The Maternal Experience Maria C. Kidner and Mary Beth Flanders-Stepans

Objective: To describe the experience of mothers 1999). HELLP syndrome can complicate pregnancy whose pregnancies were complicated with HELLP syn- from as early as 17 weeks gestation to as late as the drome (hemolysis, elevated liver enzymes, and low first few days postpartum and can occur without all platelets) and to determine if such experiences could the classic symptoms of pregnancy-induced hyper- be clustered by common themes from which a model tension (hypertension, edema, and proteinuria; Por- could emerge. tis, Jacobs, Skerman, & Skerman, 1997). This dev- Design: Retrospective, descriptive, qualitative astating maternal hypertensive complication results study utilizing grounded theory analysis. in multisystem changes that can rapidly cascade into Setting: Participants were interviewed in their organ failure and death. In the United States, an esti- homes via telephone. Participants were from Kansas, mated 4,000 to 16,000 women will experience Maine, Maryland, Michigan, Minnesota, Mississippi, HELLP syndrome annually, resulting in 1,480 to South Carolina, Utah, and Wyoming, representing 5,920 (37%) newborn deaths and approximately both urban and rural settings. 156 maternal deaths (range 1% to 24% and mean of Participants: Nine self-selected survivors of 3.9%) in 1 year (Curtin & Weinstein, 1999; Guyrer, HELLP syndrome. 2000; Stone, 1998). Results: The essential structure of the experience Presently, as many as 80% of HELLP syndrome of HELLP syndrome can be expressed as a circle of no cases will be misdiagnosed, resulting in delayed med- control and not knowing, which included the five ical treatment (Musci, 1999; Stone, 1998). HELLP themes of premonition, symptoms, betrayal, whirl- syndrome represents difficult and complex patho- wind, and loss. The pervading emotions expressed physiological events that must be assessed synergis- were fear (of death), frustration, anger, and guilt. tically by the medical and nursing staff to provide HELLP syndrome represents a unique maternal experi- optimal care of the mother and child. Progression of ence that can be expressed in a model. JOGNN, 33, HELLP syndrome can occur so rapidly that within a 44-53; 2004. DOI: 10.1177/0884217503261131 matter of hours a decision should be made for deliv- Keywords: HELLP syndrome—Maternal experi- ery regardless of the gestational age (Sibai, 1992). ence—Theory building This syndrome is a disease of endothelial dysfunction that occurs at implantation, creating acti- Accepted: February 2003 vation of intravascular coagulation with incomplete trophoblast invasion and incomplete maternal spiral Pregnancy represents a time of family change, artery transformation. This leads to vascular with eager anticipation and dreams for the unborn ischemia and fibrin deposits, resulting in cyclic child and the growth of the family. Unfortunately, vasospasms and clotting cascade activation (Davies, between 0.1% and 0.4% of all pregnancies will be 1992; Joern, Funk, & Rath, 1999; Portis et al., complicated by HELLP (hemolysis, elevated liver 1997). The exact etiology remains unknown. Thus, enzymes, and low platelets) syndrome (Curtin & the possible sequelae of HELLP syndrome are varied Weinstein, 1999; Gorman, 1999; O’Hara Padden, and require frequent, intense multisystem assess-

44 JOGNN Volume 33, Number 1 TABLE 1 Sample Characteristics (Presented in order of interview contact)

Weeks Gestation Psuedo-name Age @ del G/P* Onset S&S Delivery Recall Time Platelet Nadir (mm3) Judy 33 35 G2P1 G3P2 25 30 31 34 4½ yr 15 mo 49,000 56,000 Jean 26 29 G1P1 G2P2 25 32 29 36 2½ yr ** 19,500 PIH**** Carol 26 G3P1 30 32 7 mo 20,000 Kathy 26 G1P1 32 33 2 yr 39,000 Barb 29 G2P1 13 24½ 4 yr 57,000 Tiff 28 30 G1P1 G3P2 20 n/a 24 40 6 yr 4 yr 15,000 n/a Sandy 31 G1P1 31 32 3½ yr *** Nancy 27 30 G2P1 G3P2 n/a 35 40 38 3 yrs 1 yr PIH**** 22,000 Sue 19 29 32 G1P1 G3P2 G5P3 n/a 34 26 n/a 34 28 13 yr 5 yr 2 yr n/a unknown + 38,000

*G/P = Gravida and para after delivery. **Jean was pregnant during data collection and delivered at 36 weeks for maternal hypertension. ***Sandy experienced a liver rupture prior to delivery. Unknown platelet nadir, reports counts below 50,000 before rupture. ****Nancy’s first pregnancy was complicated by PIH and not HELLP. Jean was pregnant during data collection. Her pregnancy was complicated by PIH and not HELLP. +Unknown nadir, recalled count below 60,000. ments in a hospital to monitor the crisis and prevent the groups studied included a variety of maternal and impending disaster. HELLP syndrome is a maternal neonatal complications that placed those pregnancies at hypertensive crisis that carries the risks of liver hematoma high risk. Investigating the maternal experience of HELLP or rupture, stroke, cardiac arrest, seizure, pulmonary syndrome revealed important psychosocial dynamics edema, disseminated intravascular coagulation, subendo- common to this complication, which could assist health cardial hemorrhage, adult respiratory distress syndrome, care providers in caring for families experiencing this cri- renal damage, amaurosis, sepsis, hypoxic encephalopathy, sis. The purpose of this study was to describe the experi- and maternal or fetal death (Cunningham, MacDonald, ences of mothers whose pregnancies were complicated Grant, Leveno, & Gilstrap, 1993; Davies, 1992; DeCher- with HELLP syndrome. A secondary goal was to create a ney & Pernoll, 1994; Gorman, 1999; Isler et al., 1999; model that would facilitate the communication of this McCormack, 1998; Sibai, 1992; Stone, 1998; Weinstein, experience to health care providers. 1985). The recurrence rate of HELLP syndrome ranges from 3% to 27%, depending on the gestational age at Method delivery and presence of underlying hypertension (HELLP Syndrome Society, 2002; Sullivan et al., 1994). The earli- This research used a constant comparative method to er the onset, the higher is the recurrence risk. analyze data collected through grounded theory, enabling An understanding of the maternal experience is imper- the researchers to discover, describe, and discuss the ative to development of an appropriate plan of care. The essence of the investigated experience. A grounded theory cataclysmal aspects of HELLP syndrome to the mother, qualitative study design allows the investigator to develop the unborn, and ultimately the family cannot be underes- emergent theories based on direct empirical observations timated. The speed of cascading events, delay in diagno- and intuitions (LoBiondo-Wood & Haber, 1998; Massey, sis, and real threat to the lives of the mother and the 1995). unborn baby mark HELLP syndrome as unique. An extensive review of the literature located no published Sample research directed toward understanding the emotional A purposive sample of nine HELLP syndrome sur- and physical effect of the HELLP syndrome crisis as per- vivors, who were self-selected, were invited to share their ceived by the mothers. There is abundant information on experiences in this retrospective, descriptive, qualitative high-risk maternal emotional and stress effects, although study. Eight participants were obtained from an open-

January/February 2004 JOGNN 45 letter invitation placed in the HELLP Syndrome Society, Inc. newsletter, and one was referred by a local registered TABLE 2 nurse. Criteria for participation in the study included Interview Questions being a survivor of HELLP syndrome, having had a reported platelet count of less than 100,000 mm3 during First Interview Questions pregnancy, being able to speak English, and being 18 1. Please tell me about your experience of HELLP years of age or older. Eight participants were White and syndrome. one was Hispanic. The women represented both rural and 2. What was it like to have HELLP syndrome? urban settings. Participants were from Kansas, Maine, 3. What was the worse or most difficult aspect of HELLP Maryland, Michigan, Minnesota, Mississippi, South Car- syndrome you faced? olina, Utah, and Wyoming. 4. What was the best or most thrilling aspect of HELLP syndrome for you? Sample Characteristics The 9 mothers represented 15 deliveries, with 5 mothers having subsequent pregnancies and 2 experiencing pant were conducted. In addition to the three interviews, HELLP syndrome during their second pregnancy (see each mother completed a demographic form. Twenty- Table 1). One mother was pregnant during the data col- seven audiotaped interviews, nine demographic question- lection. Of the 15 deliveries, there were 3 neonatal deaths. naires, and extensive field notes provided the rich data. A Average gestational age at delivery was 34½ weeks, with constant comparative method of grounded theory a range from 24 to 38 weeks. The reported platelet nadir allowed for thematic development and member check ver- 3 3 range was 15,000 mm to 57,000 mm , with an average ification, using reflection and clarification to verify the 3 of 35,055 mm (Normal pregnancy platelet range is emotions and experiences shared. Member checks con- 3 3 140,000 mm to 400,000 mm ). Platelet nadirs were not sisted of discussing developing themes with each partici- available for two mothers. However, their recalled counts pant. Each mother’s experience, ideas, and opinions were 3 were below 100,000 mm . Verification of the diagnosis of evaluated and incorporated in the developing model. HELLP syndrome was made by the clinical presentation Before the final member check, all transcriptions were and reported laboratory data. Recall time from delivery sent to the coauthor for independent thematic develop- to data collection ranged from 15 months to 13 years, ment. After themes were identified, an agreement was with 2 years being the mean. reached and a model was developed. The themes were then used in the graphic model development. Each moth- Data Collection er received a copy of the graphic model prior to the final Prior to recruitment, the proposal was approved by the member check. The model was subsequently presented to institutional review board. Participation was voluntary, 44 surviving mothers attending the 2000 HELLP Syn- and each respondent was informed that she had the right drome Symposium for additional verification and valida- to refuse to participate and could withdraw at any time. tion. There was full support of the model by both partic- All participants provided their informed consent before ipants and the reviewing survivors. data were collected. None withdrew from the research. A single in-person pilot interview was conducted to Findings develop the open-ended questions for the interview (see The interviews were highly emotional as mothers Table 2). The question framework was based on the phe- shared their stories of survival, feelings, and experiences nomenological study of high-risk pregnancy by Stainton, involving HELLP. Although experiences were different for Harvey, and McNeil (1995). Each interview was conduct- each mother, there were striking similarities among the ed with respect for the sensitive nature of the topic and stories. The experience often began with a premonition the possibility of bringing up buried emotions from a traumatic situation. Each mother was given ample time to discuss her experience, until she felt that she could conclude the interview. Although social support service refer- he maternal experience of HELLP syndrome rals were offered at the conclusion of each interview, all T participants declined the offer. was permeated with a fear of death and remained a strong determining factor in the Interview Questions All interviews were audiotaped and transcribed verba- decision to avoid future pregnancies. tim, with pseudonyms inserted for identity protection. Three audiotaped telephone interviews with each partici-

46 JOGNN Volume 33, Number 1 that something was wrong. The quest for reasons for symptoms led to a sense of being betrayed by trusted people. Ultimately, mothers perceived that their bodies had failed to meet their expectations of the desired pregnancy, which led to feelings that their bodies had betrayed them.

Fear accentuates the profound feelings of loss of the normal maternal experience and future pregnancies.

The medical diagnosis set off a whirlwind of activity as attempts were made to save the lives of the mother and baby. The maternal experience of HELLP syndrome was permeated with a fear of death that did not dissipate with recovery but remained a determining factor in the decision to avoid future pregnancies. This fear accentuated the profound feelings of loss of the normal maternal experience and future pregnancies. Five of the 9 mothers decided not to attempt another pregnancy. FIGURE 1 The emotions of fear of death, frustration, anger, and Maternal experience of HELLP syndrome. guilt were reinforced by the whirlwind of medical activities that created situations over which the mother had no Analysis of these data resulted in 23 common aspects control and during which she experienced not knowing. that were then grouped into central themes. Subsequent- Although these 9 women may not be representative of all ly, the model of maternal experience of HELLP syndrome women with HELLP syndrome, by sharing their experi- was developed (see Figure 1). The common themes ences, they revealed the threads that became the tapestry expressed were labeled as premonition, symptoms, of the maternal experience of HELLP syndrome. betrayal, whirlwind, and loss. The common emotions were fear (of death), frustration, anger, and guilt. Binding the entire experience were the overwhelming feelings of Model of the Maternal Experience of HELLP no control and not knowing. Syndrome The model of the maternal experience of HELLP syn- Premonition drome is circular and represents an encasing experience From the beginning of the pregnancy, even before they that continues to affect the mother’s life. The model has had physical symptoms, all mothers (primigravidae) in two rings: the outer ring, for the pathophysiological this sample made statements about a premonition or changes that occur with the altered blastocyst at implan- thoughts of “not feeling right.” Seven of the 9 mothers tation, represents HELLP syndrome without overt symp- stated that they had felt something was wrong early in the toms. These changes will create HELLP syndrome. The pregnancy. Sue stated, “I just had the feeling that some- mother’s experience of perplexing pregnancy symptoms is thing wasn’t right inside. I knew something wasn’t right represented by entering the inner ring of the model. inside.” Judy stated, “I just knew something was going The mothers’ experiences were traumatic and occurred on, but I did not want to face it . . . feeling that something with great turmoil, thus the schematic design surrounding was not right.” Jean even told her doctor, “I am not going the delivery is like a huge whirlwind. Emotions reported to make it to term.” were both poignant and powerful; therefore, they are illustrated by the outstretched arms of the whirlwind. Sur- Symptoms vival is represented on the right of the outer ring. A dot- The maternal experience of HELLP syndrome took ted line denotes recovery, because the HELLP syndrome shape with the first signs and symptoms the mother expe- appears to continue to be part of the mothers’ emotional rienced. The symptoms were often described as back pain, and physical lives. fatigue, not feeling well, shortness of breath, abdominal

January/February 2004 JOGNN 47 pain, nausea and vomiting, and severe right upper quad- and encouraged them not to worry. Thus, the women’s rant pain. Pain was the most consistent symptom experi- expectations of their health care providers were not met. enced. Three of the mothers shared stories of pain so Nancy experienced extreme fatigue for 2 weeks but intense that they had to crawl to the bathroom, both at could not convince her physician of the significance of her home and in the hospital. Tiff, who experienced HELLP symptoms. She described her 38-week visit: syndrome 6 years earlier, vividly described her onset of So, on my 38-week visit, on a Wednesday, I was very, symptoms: very, very upset because I just felt very frustrated. As I My symptoms began January 29, 1994, with crippling said, everything was normal [her physical examina- upper quadrant pain, and I was 4 months along by that tion]. My blood pressure was a little elevated, but I time and having no other symptoms, and no other don’t remember what it was, but I know it wasn’t a big morning sickness or anything. And all of sudden, as deal. And I discussed with the doctor and I just soon as that pain started I had two nights that was a explained that I was very, very, very upset and that I load of dry heaves, but the pain never ever, ever hadn’t been feeling well. She said she would do some stopped, not day, not night, not in any position. lab work, but she was sure everything was fine and she would call me the next day. She went on to have a terrifying delivery experience, losing her baby (20 weeks gestation) and nearly losing her The following morning, Nancy was notified (on her life. answering machine) to come to the hospital as soon as possible and that “it was an emergency,” “her life was in Betrayal danger,” she had “HELLP syndrome,” and “delivery was The mothers reported a sense of being led astray and to be imminent.” She would spend 4 weeks in the hospi- deceived, and having their concerns being viewed as tal recovering from complications of HELLP syndrome. worthless. They agreed that the word betrayal represent- Every participant made statements of bewilderment ed their perspective. These mothers reported a strong and disbelief when told that their situation was serious or sense of betrayal by three distinct sources: other trusted life-threatening. All the mothers reported being told that women, health care providers, and their own bodies. the symptoms they were concerned about (before the diagnosis) were normal variants of pregnancy. Yet after Betrayal by Wiser Women. The mothers sought infor- diagnosis, these same symptoms were seen as important mation from women they trusted to have the knowledge and dangerous symptoms of HELLP syndrome. This and correct answers. With the onset of physical symp- delayed recognition and diagnosis of HELLP syndrome toms, women questioned whether their symptoms repre- created the strongest sense of betrayal. sented a problem within the pregnancy or were a normal Several of these mothers were admitted to antepartum part of pregnancy. All of these pregnant women asked units for evaluation of nausea, vomiting, or pain. In the other women (described as wiser women) about the hospital, the women often felt that the signs and symp- symptoms and received universal reassurance that these toms of HELLP syndrome were still being devalued symptoms were normal. They were counseled not to before the diagnosis of HELLP syndrome was made. The worry. Nancy shared her story: mothers felt that most of the medical staff expected the I had everyone in the world, who was wiser than me, symptoms to be representative of a normal pregnancy, the telling me that this was heartburn, that this was reflux, flu, or gallbladder problems. Several mothers had diffi- that this was stomach problems, that this was tension. culty with the hospital staff before the diagnosis of I actually let the pain go unchecked. HELLP syndrome was made. Tiff, who was admitted to the hospital for uncontrolled abdominal pain and vomit- Responses from wiser women did not meet the moth- ing, shared her experience of that night and stated: ers’ expectations, leaving them with a sense of betrayal. Despite pain, nausea, and vomiting, many mothers wor- I spent most of time between throwing up and arguing ried about continuing to discuss their symptoms with with the nurse. She was incredible! It was like some- wiser women for fear of being labeled a baby or whiner. thing out of the movie or something. She was just standing there and hollering at me, saying things like, Betrayal by Health Care Providers. Still concerned “You are not actually doing anything to help the pain over the bewildering symptoms, the mothers then dis- go away, are you? I think you’re bringing this on your- cussed their symptoms and fateful feelings with their self. I have already seen how much Demerol they have health care providers. The mothers were seeking affirma- given you and you shouldn’t be in any pain at all. tion from people they trusted and were hoping for treat- There is no reason for it.” I was just sickened and ment. Most physicians, however, told the mothers their stopped talking altogether. symptoms were normal or common pregnancy ailments

48 JOGNN Volume 33, Number 1 Betrayal of Self. Several of the mothers felt their bod- this isn’t the way pregnancy is supposed to be. I mean you ies failed to meet their hopes and expectations of preg- have visions of natural childbirth and your husband there nancy and that their bodies had betrayed them. Judy stat- and so exciting.” Kathy said, “You can’t even experience ed, “It was just really emotional to think my body did the joy of giving birth because you are so sick and that’s this. She [her baby] didn’t have a chance.” Kathy another hard thing to deal with.” described her sense of body betrayal: I felt my body betrayed me. There was nothing in my pregnancy I could have done differently. I did everything by the book. I mean, as far as nutrition and t is nothing you get over, but it is lifestyles, so that part was good because I could explain “I it to myself . . . but you just feel . . . I just felt so something that has become part of my life.” betrayed by my body.

Whirlwind Often both the mothers and their newborns were in With the recognition and diagnosis of the HELLP syn- intensive-care units, where the joys of the first moments drome, the physicians initiated an intensive whirlwind of of parenthood could not be fully shared. Many mothers activity as attempts were made to save the mother or baby described their postpartum experience as “horrid.” Cathy or both. All the mothers stated that one of their primary shared her feelings toward the new role of motherhood. thoughts about HELLP syndrome was that it happened so She stated, “I was a new mother and was so sick and I fast. One mother, Judy, who had HELLP syndrome twice, couldn’t enjoy going to visit my daughter in the nursery.” described her experience: Sandy said that her baby celebrated her 1st birthday With Walden, the first pregnancy, it was like a whirl- before she was able to care for her completely. It took wind. I remember, they just took me to the hospital more than 16 months to recover after the complicated room and they were just checking my blood pressure, HELLP syndrome delivery that resulted in a liver rupture. and then saying that I had HELLP syndrome and that Eight women in this sample decided not to have anoth- my life was in danger, and it had to do with your liver er pregnancy because of their strong fear of death and the and your blood and all of this. And that I had to be intense memories of the HELLP syndrome they survived. flown out now. I remember just like being slapped in Their choice of not seeking a subsequent pregnancy is the face . . . not really computing what was going on. embedded in feelings of not knowing the future and having no control over the possibility of experiencing HELLP Several of the mothers used the term whirlwind to syndrome again, in conjunction with the intense fear of describe their experience. Tiff opened her interview by death. Barb shared her continued feelings of loss when she saying “My experience with HELLP syndrome was stated, incredibly whirlwind.” After the transport and learning that her baby was going to die, she stated: I had to keep really, really, really busy. I had to keep my mind from having a free moment or . . . your thoughts After I had finally realized that I was willing to give up go back to what you lost and it is difficult, and it is dif- my life for the baby, but that wasn’t even an option. ficult for me 4 years later. When I see a pregnant That’s when I started going bad. Anyway, we went on, woman or little babies on TV or whatever, I still feel an it was a whirlwind. actual stab in my heart. So it is nothing you get over, but it is something that has become part of my life. Loss During the postpartum, the overriding theme of the Barb lost her baby at 24½ weeks gestation. She stated, maternal experience was loss. The loss of the initial joy of “There hasn’t been a day gone by that I haven’t thought motherhood, the shattered dreams of having a full-term about her [the baby] and with those thoughts come the birth, and, for most of the mothers, the loss of future chil- heartache and emptiness.” She went on to say, “I will dren were common aspects of the HELLP syndrome expe- never have ‘normal’ again, and that’s true, and now we rience. For many, the HELLP syndrome delivery will be have a different normal.” their only birth experience. Six of the mothers shared their feelings of loss and grief Not Knowing and No Control caused by the HELLP syndrome delivery that was so dif- The feelings of not knowing and no control were ferent from the expected pregnancy outcome. Carol stat- reported as overwhelming because of the powerful ed, “I don’t know what a contraction feels like, I never betrayal the women experienced during the signs and had one.” Sandra stated, “And I just cried, I just thought: symptoms phase and the speed of events from diagnosis

January/February 2004 JOGNN 49 to delivery. The women were told that the situation was I can remember . . . looking for the light and it terrified life-threatening, even though their symptoms had not me that I wasn’t seeing it, because I thought I was changed. This conflict created a prevalent sense of not going to alternative places, but now I realize it was knowing and having no control. This feeling was exem- because I wasn’t dead. But I was obviously that close plified when Tiff was told she had HELLP syndrome: that I was looking for the light, I asked . . . I do remember asking . . . because I kind of remember looking for I was sitting at the edge of the bed eating breakfast and the light and I remember asking my mom if I was he came in and told me and my mother to pack my dying. And then I said something about dying to Tom, bags immediately because we had to be transferred too, because he said that he knew, until that point, he right now. He said, “Well you are a very sick little girl, was being completely out of the way of the nurses and right now we know that one of you is going to die.” he said when I asked him that, he didn’t care if he was Tiff said that even after the transport to another hospital, in their way. He said he knew he had to start talking to she was unsure of what caused the chain of events. me and that’s when he started. I guess he started hold- The feeling of no control had three sources: self, med- ing my hand or something and talking to me all night ical decisions, and the event. First, having no control or and so yes, death was a huge factor. And that’s what feeling helpless over one’s own body was reported by all scares us to this day, knowing I came that close. We of the mothers. Several mothers stated that they had just don’t truly want to risk that. worked hard to be a “good mother” by eating correctly, One third of the mothers described extraordinary engaging in healthy lifestyles, and exercising, but felt experiences concerning death. There were stories of helpless as their bodies became full of pain, fatigue, and angels sitting on the bed for comfort and support, and a illness. Carol said, “The helplessness is just the fact that mother shared her experience of visiting with her dead there absolutely wasn’t anything I could have done differ- father, who supported her through her delivery and recov- ently to have changed the outcome . . . I mean there is ery. nothing you can do.” All of the mothers reported feeling no control over Frustration. The women reported being frustrated by medical decisions. Those decisions were made about med- the delay of diagnosis, by not knowing, and because of ications, transport to other facilities, or immediate deliv- the trusted people who failed to meet their expectations. ery, often without explanations from staff and health care Frustration returned as a strong emotion postpartum, providers or allowing input from the family. One mother when the mothers sought knowledge about HELLP syn- stated, “I have a lot of depression because my life is out drome and found it sparse or conflicting. All of the moth- of my hands.” Another mother said, “I had no control ers felt frustrated during their efforts to seek information. over anything.” The mothers also reported that they had Nancy stated, “I got frustrated with the physician. I was no control over events of life. Jean stated: just so frustrated I ended up crying at the doctor’s office because I was full of frustration and not feeling very I didn’t get really a choice to . . . I wasn’t given an opin- well.” ion or have my say because it was almost like life or death. You either do this, or you die. So, it wasn’t like Anger. Another strong emotion was anger, which was really a choice. directed toward the woman’s own body and the medical provider. When Carol discussed her feelings of mother- Emotions hood and the expected ritual of a term pregnancy and HELLP syndrome is an emotional as well as a physical delivery, she stated: crisis. The participants reported consistent feelings of fear And so I had the feeling that we women are expected (of death), frustration, anger, and guilt. to go through all of this [labor and delivery] and I’m Fear (of Death). The intense obstetric emergency of never going to experience it. So, yes, angry at my body HELLP syndrome is permeated with fear of death. All for not allowing the chance to experience a normal, mothers shared intense fear that either they or their babies full-term pregnancy. would die. This fear escalated because of the rapid med- Judy, who had HELLP syndrome twice, stated, “Look at ical interventions. Kathy stated, “I was scared out of my what my body did. I can’t even carry to term.” The mind. I mean, the call came in and said it was an emer- HELLP syndrome survivors discussed angry feelings of gency, go immediately.” Jean shared her fears, “It hap- being robbed of a great pregnancy and missing the joyous pened so fast and I was so scared. I thought that I would occasion of the desired birthing experience. lose my life, or the baby would die.” Carol stated, “I still have these really bitter feelings Barb described her near death experience as: towards my doctor and the whole experience. I was

50 JOGNN Volume 33, Number 1 robbed of a great pregnancy, of this wonderful birthing dom, powerlessness, helplessness, and fear (McCain & experience.” Judy also illustrated this anger and loss of Deatrick, 1994; Stainton et al., 1995). Mothers experi- pregnancy when she stated: encing HELLP syndrome seem to experience some of these emotions, but in a unique way. For example, the I would have liked to have experienced some of the commonly reported emotion of fear is different for the pain and torture of being so big you could hardly HELLP syndrome mother. Instead of having the most move. But I was in my 8th month and started to enjoy commonly reported fear of a malformed baby, delivery it and then it got ripped away . . . one of the big things complications of vacuum extractors, or cesarean section is “why?” . . . and I think, I feel, a lot of anger that (Szevernyi, Poka, Hetey, & Torok, 1998), these mothers nobody can do anything about it. experience an intense fear of death. In this sample, a spe- All of the mothers described anger at the medical cific and unique theme to HELLP syndrome was the uni- provider. Most of this anger developed due to a delay in versal feeling of having a premonition. It would be pru- diagnosis or because the rapid medical interventions cre- dent for health care providers to assess for and document ated a sense of not knowing and having no control. such feelings at each prenatal visit and during antepartum hospital admissions. Emphasis can then be placed on dif- Guilt. The fourth strong emotion evoked throughout ferentiating common pregnancy symptoms (nausea, vom- the HELLP syndrome experience was guilt. Women felt iting, heartburn, and edema) from early symptoms of guilty about the baby and the event. Guilt about the baby HELLP syndrome. This may assist in a quicker and more was especially evident with the mothers who delivered timely recognition of pregnancy compromise and lead to prematurely or whose babies died. Jean stated, “I felt so a diagnosis of HELLP syndrome. Diagnostic value can guilty I did this to him and don’t even know why.” Sever- then be placed on a certain clinical history, which includes al mothers whose babies were in the newborn intensive- generalized edema, history of migraines, breathlessness at care unit stated the guilty feelings occurred when they did rest, severe tiredness, and epigastric pain (Stoger & Wal- not recognize their baby. Judy shared her experience and ters, 2002). said, “It was horrible to have someone say, ‘Wow! My In conjunction with presenting symptom assessments, gosh, that is your baby!’ You have to go on someone else’s nurses and providers should understand the pathophysi- opinion.” Women also felt guilty because their partners ology of HELLP syndrome and be able to complete a had to endure the premature delivery, the traumatic deliv- comprehensive physical examination to augment the ery, and the long recovery. Carol stated, “I felt guilty maternal-neonatal assessments. In a rapidly deteriorating because he had to go through all of that too, he had to be patient, examinations should be conducted every 15 to 30 strong for everybody.” Barb shared her feelings of guilt minutes for cranial involvement, impending seizure activ- toward her partner after she had discussed the death of ity, hypoxic encephalopathy, pulmonary edema, adult res- their baby: piratory distress syndrome, disseminated intravascular I felt like I had let him down; it was all my fault we coagulation, liver hematoma or rupture, renal compro- can’t have kids. Well, I mean we could try again. We mise, subendocardial hemorrhage, shock, and fetal com- are not sure at this point time. We don’t dare try. So promise. In conducting the assessment, value must be anyway, it was like my fault, so I am so grateful he placed on the woman’s symptoms. If symptom relief is not doesn’t blame me. obtained, then a search for clues that may expose an impending obstetric crisis must be conducted. Acknowl- Several other mothers who were in intensive-care units edging the value of a woman’s previous symptoms may and struggling for their own lives stated they also felt help validate her concerns and increase feelings of con- guilty because they were not immediately available to see trol. their babies. One mother stated, “All I wanted to do was Providing women with information about HELLP syn- rest and sleep. I felt guilty because I was thinking about drome, the assessments required, the treatments, and the myself instead of wanting to be in the newborn intensive- common maternal experiences can decrease the feelings of care unit with my baby.” Judy illustrated this persistent having no control. Green and Coupland (1990) found guilt when she stated, “It is just always going to be with that allowing mothers to take an active part in decision you and something you don’t feel normal and that you are making and giving them information they could under- not good enough, or you can’t.” stand about what the health care staff were doing greatly decreased the feeling of no control. In a situation in which Implications for Health Care Providers the mother or baby is rapidly deteriorating, explaining the rationale for medical treatment may be the only avenue to HELLP syndrome is a unique maternal experience, increase feelings of control. physically and emotionally. Pregnant women labeled as Continued support and education of the mother are high-risk reported anxiety, depression, loneliness, bore- vital in the postpartum. Discussing the maternal experi-

January/February 2004 JOGNN 51 ence is beneficial because it enhances the knowledge of increase the data gathering on the maternal and even the HELLP syndrome and lets mothers know they are not family experiences of HELLP syndrome. In addition, after alone in their experience. Verbal reconstructions and experiencing HELLP syndrome, many women have lin- sharing of the delivery story is important in creating affir- gering effects of fatigue or pain as well as emotional feel- mation of the experience. If sharing of the experience does ings of loss. These effects can influence well-being and not occur, then negative thoughts of the experience can overall health. Longitudinal research on HELLP syn- persist (Affonoso, Mayberry, Lovett, & Paul, 1994; drome is needed to understand the long-term physical and Ramer, 1990). Referral to support groups such as the emotional effects on the mother and the family unit. HELLP Syndrome Society, Inc. or the Preeclampsia Foun- dation can also help mothers understand their experience Limitations and allow them to share it with others who will under- Study limitations include the inherent difficulties of stand and support them. Lack of birthing affirmation and using open-ended questions to retrieve a lived experience re-creation may be one of the reasons that it is difficult for and subsequent generalization of the findings from the these survivors to move beyond their sense of loss. population assessed to all mothers experiencing HELLP It is important for physicians and nurses to understand syndrome. The participants in this research were recruit- that mothers may have had intense near-death experi- ed from an online support group. Participants of specific ences. In this sample, 30% of the mothers described ethnicity were neither sought nor considered in the model encounters with angels or other spiritual beings during development. Study participants were self-selected. This delivery and recovery. These mothers are emotionally and method of selection attracted women who were ready to spiritually vulnerable and require affirmation and contin- share their experiences, which may have been much more ued support after discharge. Nurses must attempt to difficult than the norm. understand the mother’s feelings of loss through her perspective so they can provide her with the support and Conclusion emotional care she needs. The importance of providing empathetic care and education cannot be overempha- HELLP syndrome may represent the deadliest hyper- sized. tensive crisis in pregnancy, when the mortality and mor- This sample of mothers reported overwhelmingly that bidity of the mothers and babies are combined. It is the positive aspects of having experienced HELLP syn- imperative to understand the maternal experience, to aug- drome were the knowledge that there was a specific cause ment the understanding of the pathology, to improve for their symptoms and a desire to help others who may rapid diagnosis, and to provide empathetic care. This have HELLP syndrome. The worst aspects of HELLP syn- research reveals the uniqueness of HELLP syndrome as a drome were reported as pain (especially unacknowl- high-risk obstetric event that can be expressed as a circle edged), fear (of the events and possible outcomes), loss (of of no control and not knowing, which include the themes normal pregnancy), and death (the near-death experience, of (a) premonition, (b) symptoms, (c) betrayal, (d) whirl- death of the baby, and potential death if another preg- wind delivery, and (e) loss. The prevalent emotions nancy is attempted). Most of these mothers reported expressed were fear (of death), frustration, anger, and anger and concern over the care they received both guilt. Each mother’s story was unique, yet their experi- antepartum and postpartum, which was due to the lack of ences of HELLP syndrome had distinct patterns and com- information provided to them about HELLP syndrome. mon themes. A graphic model was developed and repre- These aspects of the experience must be addressed to sents a beginning understanding of the maternal decrease the risks of posttraumatic stress syndrome experience of HELLP syndrome. Utilization of this model (Creedy, Shocat, & Horsfall, 2001; Reynolds, 1997). by health care providers may assist in earlier recognition Both nurses and physicians should provide information of the disease and management of the psychosocial and about HELLP syndrome to mothers and their families. emotional aspects of the syndrome after it has been diagnosed. Implications for Further Research REFERENCES The study of HELLP syndrome from the mother’s perspective is preliminary. Verification of this model and Affonoso, D., Mayberry, L., Lovett, S., & Paul, S. (1994). Cog- research in understanding mothers’ perceptions of care nitive adaptation to stressful event during pregnancy and provided by both nurses and physicians are imperative for postpartum: Development and testing of the CASE instru- developing improved methods of care. Use of qualitative ment. Nursing Research, 43(6), 338-343. data will enable the development of research-based quan- Creedy, D. K., Shocat, I. M., & Horsfall, J. (2001). Childbirth titative questionnaires to expand the sample size and and the development of acute trauma symptoms: Inci- dence and contributing factors. Birth, 27(2), 104-111.

52 JOGNN Volume 33, Number 1 Cunningham, F., MacDonald, P., Grant, N., Leveno, K., & Portis, R., Jacobs, M., Skerman, J., & Skerman, E. (1997). Gilstrap, L. (Eds.). (1993). Williams obstetrics (19th ed.). HELLP syndrome (hemolysis, elevated liver enzymes and East Norwalk, CT: Appleton & Lange. low platelets) pathophysiology and anesthetic considera- Curtin, W., & Weinstein, L. (1999). A review of HELLP syn- tions. Journal of the American Association of Nurse Anes- drome. Journal of Perinatology, 19(2), 138-143. thetists, 65(1), 37-45. Davies, N. (1992). Hypertensive disorders of pregnancy for the Ramer, L. (1990). Pregnancy: Psychosocial perspective (2nd trainee. British Journal of Hospital Medicine, 47(8), 613- ed.). White Plains, NY: March of Dimes Birth Defects 619. Foundation. DeCherney, A., & Pernoll, M. (Eds.). (1994). Current obstetric Reynolds, J. L. (1997). Post-traumatic stress disorder after child- & gynecologic diagnosis & treatment (8th ed.). Norwalk, birth: The phenomenon of traumatic birth. Canadian CT: Appleton & Lange. Medical Association Journal, 156(6), 831-836. Gorman, S. (1999). HELLP syndrome and the anesthesia care Sibai, B. (1992). Management and counseling of patients with provider. In S. Shnider (Ed.), The Sol Shnider, M.D. preeclampsia remote from term. Clinical Obstetrics and obstetrical anesthesia meeting (pp. 55-67). San Francisco: Gynecology, 35(2), 426-435. University of California Press. Stainton, M. C., Harvey, S., & McNeil, D. (1995). Understand- Green, J., & Coupland, V. (1990). Expectations, experiences, ing uncertain motherhood: A phenomenological study of and psychological outcomes of childbirth: A prospective women in high-risk perinatal situations. Calgary: Univer- study of 825 women. Birth: Issues in Perinatology and sity of Calgary Press. Education, 17(1), 15-24. Stoger, S., & Walters, B. (2002). Diagnostic value of the clinical Guyrer, C. (2000). Severe postpartum HELLP syndrome. Jour- history in pre-eclampsia. In M. Decker (Ed.), Hyperten- nal of Obstetrics and Gynaecology, 20(2), 194. sion in pregnancy: Abstracts from the 13th World Con- HELLP Syndrome Society, Inc. Newsletter. (2002). HELLP syn- gress of the International Society for the Study of Hyper- drome survey. Message posted to http://members.aol.com/ tension in Pregnancy (p. 48).New York: Marcel Dekker. HELLP1995/index.html Stone, J. (1998). HELLP syndrome: Hemolysis, elevated liver Isler, C., Rinehart, B., Terrone., Martin, R., Magann, E., & enzymes and low platelets. Journal of the American Med- Martin, J. (1999). Maternal mortality associated with ical Association, 280(6), 559-562. HELLP (hemolysis, elevated liver enzymes, and low Sullivan, C., Magann, E., Perry, K., Roberts, W., Blake, P., & platelets) syndrome. American Journal of Obstetrics and Martin, J. (1994). The recurrence risk of the syndrome of Gynecology, 181(4), 924-928. hemolysis, elevated liver enzymes, and low platelets Joern, H., Funk, A., & Rath, W. (1999). Doppler sonographic (HELLP) in subsequent gestations. American Journal of findings in pregnancy and HELLP syndrome. Journal of Obstetrics and Gynecology, 161, 940-943. Perinatal Medicine, 27(5), 388-394. Szevernyi, P., Poka, R., Hetey, M., & Torok, Z. (1998). Con- LoBiondo-Wood, G., & Haber, J. (Eds.). (1998). Nursing tents of childbirth-related fear among couples wishing the research: Methods, critical appraisal, and utilization (4th partner’s presence at delivery. Journal of Psychosomatic ed). St. Louis: Mosby–Year Book. Obstetrics and Gynecology, 19(1), 38-43. Massey, V. (1995). Nursing research (2nd ed.). Springhouse, PA: Weinstein, L. (1985). Preeclampsia/eclampsia with hemolysis, Springhouse. elevated liver enzymes, and thrombocytopenia. Obstetrics McCain, G., & Deatrick, J. (1994). The experience of high-risk and Gynecology, 66(5), 657-660. pregnancy. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 23, 421-427. McCormack, D. (1998). Care of the obstetric patient in the tra- Maria C. Kidner, RNC, MSN, FNP, is a primary care provider ditional intensive care unit. Critical Care Nursing Quar- and emergency room trauma coordinator, South Big Horn terly, 21(3), 1-11. County Critical Care Access, Basin, WY. Musci, T. (1999). HELLP syndrome: What is it? In S. Shnider (Ed.), The Sol Shnider, M.D. obstetrical anesthesia meeting (pp. 43-48). San Francisco: University of California Mary Beth Flanders-Stepans, RN, PhD, is an associate profes- Press. sor, University of Wyoming, School of Nursing, Laramie. O’Hara Padden, M. (1999). HELLP syndrome: Recognition and perinatal management. American Academy of Family Address for correspondence: Maria C. Kidner, RNC, MSN, Physicians, 60(3), 828-836. FNP, South Big Horn County Critical Care Access, 388 South Highway 20, Basin, WY 82410. E-mail: [email protected].

January/February 2004 JOGNN 53 CLINICAL RESEARCH

Prenatal Predictors of Intimate Partner Abuse Linda L. Dunn and Kathryn S. Oths

Objective: To determine the prevalence of phys- Violence by an intimate partner (IP) or former IP ical abuse and to identify predictors of abuse in a is a major health and social problem for women sample of pregnant women in Alabama. internationally and one that has reached epidemic Design: A prospective, correlational design was proportions in the United States. One in five women used. report abuse during pregnancy (McFarlane, Parker, Setting: Participants were drawn from four unre- Soeken, Silva, & Reel, 1998). Exposure to violence lated public and private prenatal clinics in Tuscaloosa, in pregnancy may endanger the health and life of Alabama. both the pregnant woman and her fetus. Abuse in Participants: The sample consisted of pregnant pregnancy may result in homicide and is, in fact, the women between 20 and 34 years of age who had no leading cause of death by injury to pregnant women high-risk health conditions and who initiated prenatal (Dannenberg et al., 1995; Fildes, Reed, Jones, Mar- care during the 1st trimester. Four hundred thirty-nine tin, & Barrett, 1992; Frye, 2001). While no known ethnically diverse women completed interviews during causal theory exists to explain abuse in pregnancy, the 1st and 3rd trimesters and had available birth out- all abuse against women is intentional and is aimed comes. at power and control by the perpetrator (Reel, Main Outcome Measure: Physical abuse during 1997). pregnancy was measured by a modified version of the Healthy People 2010 (U.S. Department of Health Abuse Assessment Screen. Bivariate and multiple and Human Services, 2000) lists prevention of vio- logistic regressions yielded significant associations lence against women as one of the top priority between individual predictors and physical abuse health issues for the United States. Identifying preg- during pregnancy. nant women who are either experiencing abuse or at Results: The findings showed that 10.9% of the risk for abuse and providing intervention with edu- sample experienced physical abuse during the current cation, safety plans, and referral have the potential pregnancy and 62% reported the intimate partner or to substantially reduce abuse in pregnancy (Guth & former intimate partner to be the perpetrator. The best Pachter, 2000; Rosenburg & Fenley, 1991). In addi- predictive model included stressful life events, depres- tion to using a traditional abuse assessment ques- sion, lack of faith in God or a higher power, and lack tionnaire, knowing predictors of abuse in pregnancy of contraceptive use. JOGNN, 33, 54-63; 2004. would provide prenatal health care providers addi- DOI: 10.1177/0884217503261080 tional means for detecting women who are abused Keywords: Physical abuse—Pregnancy—Prena- or who are at risk for abuse in pregnancy. tal predictors—Spirituality—Violence The aims of this study were to determine the prevalence of abuse in a sample of pregnant women Accepted: December 2002 from Alabama as well as predictors of such abuse. For the purposes of this article, abuse was defined as

54 JOGNN Volume 33, Number 1 any intentional physical attack by a perpetrator that ed (Amaro et al., 1990; Campbell et al., 1992). However, resulted in injury or pain to the research participants. findings from one study showed no consistent demographic factors that predict abuse in pregnancy (Hotaling Literature Review & Sugarman, 1986). Methodological problems with sampling, definitions, and measurement issues may have lim- North American investigators have shown the preva- ited previous studies in documenting consistent correlates lence of violence against pregnant women to range from for violence in pregnancy (Gazmararian et al., 1995). 4% to 30% (Amaro, Fried, Cabral, & Zuckerman, 1990; Some of the affective correlates of abuse during preg- Flitcraft, 1992; Gazmararian et al., 1995; Helton, McFar- nancy include stress-related physical symptoms, depres- lane, & Anderson, 1987; McFarlane, Parker, Soeken, & sion, anxiety, low self-esteem, and suicide attempts Bullock, 1992; Stewart & Cecutti, 1993). The variation in (Campbell, 1989; Campbell et al., 1992). Reported psy- prevalence rates may result from the timing and the chosocial correlates include stress/stressful life events method of screening (McFarlane et al., 1992). Prevalence (SLEs), lack of social support, isolation, housing prob- rates of violence during pregnancy have been shown to be lems, and fewer material possessions (e.g., appliances, equal to or greater than several complications for which cars, baby equipment) (Campbell et al., 1992; Cokkinides pregnant women are routinely assessed (e.g., placenta & Coker, 1998). Behavioral predictors include substance previa, pregnancy-induced hypertension, and gestational abuse (cigarettes, alcohol, illicit drugs) and inadequate or diabetes) (Naumann, Langford, Torres, Campbell, & late entry into prenatal care (Campbell et al., 1992; Glass, 1999). Nonetheless, studies show that health care Cokkinides & Coker, 1998; McFarlane, 1993; McFarlane providers, particularly obstetrician-gynecologists, contin- et al., 1992; Parker et al., 1993). The association of SLEs ue to neglect assessing abuse in pregnant women during with risk of abuse in pregnancy is a relatively new find- routine prenatal care visits (Frye, 2001; Guth & Pachter, ing. Cokkinides and Coker (1998) reported that women 2000; Horan, Chopin, Klein, Schmidt, & Schulkin, who experience more than five SLEs in the 12 months 1998). Women who are abused in pregnancy but not prior to delivery were 17.1 times more likely to experi- identified have increased health complications and, there- ence IP violence (IPV) than women who reported one or fore, increased medical costs (Gazmararian et al., 1995). no SLEs during pregnancy. Every pregnant woman could potentially experience vio- A growing and renewed interest in the impact of religion/ lence in pregnancy by her current or former IP (hereafter, spirituality on one’s health has been demonstrated over “IP” will refer to both current and former IPs) and, there- the past 20 years (Hall & Lanig, 1993; Mickley & Car- fore, should be screened (Frye, 2001; Poole et al., 1996). son, 1995). Spirituality and religiosity are not the same The strongest predictor of abuse in pregnancy is prior (O’Brien, 2003). Every person has a spiritual dimension abuse (Helton et al., 1987; McFarlane, 1993; Stewart & despite the fact that it may be denied or underdeveloped Cecutti, 1993). Abuse may become more frequent or (Carson, 1989; Stoll, 1989; Watson, 1988). The spirit is more severe in pregnancy; however, some studies contra- the core dimension of the human through which one is dict this association (Campbell, 1995; Wiemann, Agurcia, energized for the promotion of wellness (Newman, 1989; Berenson, Volk, & Rickert, 2000). An early study report- Piles, 1990). Universal spiritual needs include the need to ed that abuse began or worsened once the woman became love and be loved; the need to forgive and be forgiven; pregnant (Walker, 1984). Other investigators reported and the need to trust, which promotes meaning and pur- that pregnancy actually may decrease or temporarily halt pose in life and stimulates creativity. These spiritual needs abuse (Campbell, Poland, Waller, & Ager, 1992; Helton may be lived out through a relationship with God or a et al., 1987; Stewart & Cecutti, 1993; Walker, 1984). higher power (Carson, 1989; Carson & Arnold, 1996; A few studies have documented specific correlates of O’Brien, 2003). Religion denotes a set of beliefs, rituals, abuse in pregnancy with the aim of identifying pregnant and worship practices whereby one’s spirituality is women who are abused or who are at risk for abuse expressed. Religiosity has been shown to correlate with (Amaro et al., 1990; Campbell et al., 1992; Cokkinides & mental, spiritual, and physical health in the general pop- Coker, 1998; Parker, McFarlane & Soeken, 1994; Parker, ulation (Mickley & Soeken, 1993). McFarlane, Soeken, Torres, & Campbell, 1993; Stewart Fehring, Miller, and Shaw (1997) demonstrated that & Cecutti, 1993). Predictive demographic correlates for religion and spirituality had a consistent positive relation- abuse in pregnancy include young age, single status, mul- ship with the ability of a person to cope with life stress tiparity, receipt of public assistance, lower socioeconomic and chronic illness. Meraviglia (1999) conducted a criti- status, less education, and an unplanned pregnancy cal analysis of the literature regarding spirituality for (Amaro et al., 1990; Gazmararian et al., 1995; Hillard, holistic nursing. She concluded that spirituality is defined 1985; Parker et al., 1994). Substance abuse, depression, as experiences and expressions of one’s spirit in a unique and late entry into prenatal care also have been implicat- and dynamic process that reflects faith in God or a high-

January/February 2004 JOGNN 55 er power; that involves connectedness with self, others, Instruments nature, or God; and that is humanly integrated through The instrument used to measure abuse was derived three dimensions: body, mind, and spirit. The more spiri- from the widely used Abuse Assessment Screen (AAS) (Park- tual awareness one develops, the less psychosocial distress er & McFarlane, 1991). Both verbal and physical abuse one experiences. were identified, as was the identity of the perpetrator(s). Women find that spirituality is a source of strength that In contrast to other assessment tools, such as the Conflict enables them to deal with life experiences and gives mean- Tactics Scale (Straus, 1979), the AAS focuses on actual ing to life (Burkhardt, 1994). However, only one pub- physical abuse and does not include the threat of such. lished study has investigated spirituality among abused Abuse assessment screening questions were asked at both women. Humphreys (2000), in examining spiritual beliefs the first and second interviews (see Box 1). Most ques- and psychological distress in sheltered abused women, tions required either a yes or no answer. For this analysis, found that spiritual beliefs serve as an internal resource to only the predictors of physical abuse were assessed. buffer distressing symptoms. Independent variables predicted to be risk factors for Thus, this research was designed to address the gaps in physical abuse during pregnancy included standard socio- research on the prevalence and predictive correlates of demographic ones such as ethnicity (White = 1, Black = 2, abuse in pregnancy. The aim was to determine what other = 3, used as dummy variables in regressions); age; measures best identify abused women as well as women education (less than high school = 1, high school = 2); at risk for abuse. This article focuses on the association of marital status (single = 1, married/common law = 2); various demographic, social, and psychological factors income (in dollars); and employment (no = 1, yes = 2). with abuse in pregnancy, with special attention given to Employment was defined as working for 2 or more weeks the role of spirituality and religion. Spirituality is the for more than 8 hours per week during pregnancy. Due to cornerstone of holistic nursing (Burkhardt & Nagai- its extremely high colinearity with abuse during pregnan- Jacobson, 1985) and was, therefore, a major focus for this cy, abuse prior to pregnancy was assessed but not entered analysis. as an independent variable. Doing so would have masked all other associations. Methods Other independent variables of interest included reproductive-related factors such as the number of missed prenatal appointments, previous pregnancies (par- Setting and Sample ity), miscarriages, and abortions, as well as contraceptive The data presented here were gathered as part of a use (no = 1, yes = 2) and pregnancy wantedness (no = 1, comprehensive study designed to investigate psychosocial yes = 2). Also recorded were behavioral factors such as factors influencing low birth weight, including abuse drinking and smoking during pregnancy (both recorded prior to and during pregnancy (Oths, Dunn, & Palmer, as no = 1, yes = 2), car and home ownership (both no = 1, 2001). To prospectively assess the risk factors, the sam- yes = 2), and material possessions (a 10-item scale of con- pling strategy was to interview all eligible patients within sumer items, e.g., video cassette player, washer and dryer, the first 14 weeks of pregnancy and again at or after the and computer; α = .68). Depression (a 10-item pregnan- 28th week. As an added benefit of the study, we were able cy-appropriate scale was derived from the CES-D to focus on the correlates of abuse during pregnancy. [Radloff, 1977], α = .70), household crowding (no = 1, > Data were collected in Tuscaloosa, AL, from March 1993 two people per bedroom = 2), and a 22-item scale of SLEs through May 1996 at four unrelated clinics serving (Cokkinides & Coker, 1998; Holmes & Rahe, 1967) were women of various socioeconomic levels. These included included as measures of psychosocial stress. The number (a) the county health department, (b) a teaching facility of of social support members, faith in God or a higher the affiliated university, (c) a community-based clinic, and power as a source of support in times of trouble (no = 1, (d) a private obstetric group practice. To avoid the inclu- yes = 2), and frequency of attendance at religious services sion of women with high-risk pregnancies that might con- (less than once per month = 1, once or more per month = found findings related to low birth weight, eligibility cri- 2) were assessed as potential risk-reducing factors. teria were as follows: age between 20 and 34 years, early prenatal care, and no previous high-risk conditions (e.g., Procedures chronic diabetes or heart disease). Response rates were Institutional review board approval was granted for similar for all clinics and averaged 66%. Reasons for non- the study before data collection began. Every woman who participation were lack of time or interest and, most initiated prenatal care during the 1st trimester of preg- often, investigators unable to interview some potential nancy and met the sample criteria was invited to partici- participants while busy interviewing others. Four hun- pate in the study. The response rate was 66%. Once dred thirty-nine women completed both interviews. informed consent was obtained from each participant, a private in-depth interview of 30 to 60 minutes was con-

56 JOGNN Volume 33, Number 1 BOX 1 Abuse Assessment Screen

First Interview: Questions on Verbal and Physical Abuse 1. How often do you have conflicts with other adults? ______2. Do you ever dread going home because there is someone living (staying) in the house who mistreats you or is unkind to you? YES NO 3. Is there anyone who often says things to you that hurt you? YES NO (If yes:) Please tell me who. ______How often do they say hurtful things? ______4. Within the past year, have you been hit, slapped, kicked, or hurt by someone? YES NO 5. Since you’ve been pregnant, have you been hit, slapped, kicked, or hurt by someone? YES NO (If yes to either question 4 or 5:) 6. Could you please tell me who hurt you? ______7. Where on your body did they hurt you? (Body map used.) ______

Second Interview: Questions on Verbal and Physical Abuse 1. Is there anyone who often says things to you that hurt you? YES NO (If yes:) Please tell me who. ______How often do they say hurtful things? ______2. Since our first interview, have you been hit, slapped, kicked or hurt by someone? YES NO (If yes:) Please tell me who hurt you. ______Where on your body did they hurt you? (Body map used) ______Adapted from McFarlane (1993). ducted at one of the clinics by one of 12 trained interviewers ables from the bivariate analyses that were statistically (including the authors). Each participant was given $5 for significant (p < .05) being retained as covariates, a multi- each interview completed as well as a resource card that variate logistic regression analysis was then performed on listed all community agencies with phone numbers. IP physical abuse during pregnancy. This card was small enough for the participant to hide if necessary. Results Given the range of educational levels of the participants, all interview questions were translated into language below A total of 48 (11%) pregnant women reported being the 8th grade reading level to avoid potential miscompre- abused during their pregnancy. Among cases in which the hension. The interview schedule included closed- and respondent identified the perpetrator, 62% (29/47) were open-ended questions concerning, among other things, abused by an IP (current or former husbands or partners), demographics, social support, relationships, whether the whereas parents, other relatives, and persons known and pregnancy was wanted, depression, SLEs, pregnancy his- unknown accounted for the abuse of the remaining tory, substance use, income, recent history of abuse, abuse women (38%). Sixty-six women, or 15% of respondents, during pregnancy, and identity of abuser(s). All consent also reported abuse in the year before pregnancy, with forms and the completed interviews were kept locked in 62% of these naming an IP as the abuser. Eighty-one per- the principal investigator’s office. cent (n = 39) of women who reported abuse during pregnancy also reported abuse in the year prior. Compared Data Analyses with the nonabused, abused women were more likely to The software program SPSS 9.0 for Windows was used be single, younger, lack a high school education, smoke for all calculations. Bivariate associations were calculated and drink during pregnancy, and have lower incomes (see using odds ratios. This method was considered more pre- Table 1). They missed somewhat more prenatal visits, had cise than adjusted Pearson correlations (cf. Campbell et al., slightly more pregnancies, and were more likely to have 1992), which are skewed by the unequal distribution of previously miscarried or aborted. Abused women used the dichotomous outcome (Whitt, 1983). With the vari- contraception less and had more unwanted pregnancies.

January/February 2004 JOGNN 57 TABLE 1 Demographic Characteristics of Abused and Non-Abused Women, Tuscaloosa, Alabama, 1993–1996

Total Abused—IPa Abused—Otherb Non-Abused Characteristics n = 439 n = 29 (7.0%) n = 19 (4.0%) n = 391 (89%) Ethnicity White n = 211 5.7% 4.3% 90.0% Black n = 217 6.9% 4.6% 88.5% Other n = 11 18.2% — 81.8% Age (mean years) 24.4 (SDc = 3.9) 23.5 (SD = 3.5) 24.7 (SD = 3.3) 24.4 (SD = 3.9) High school education or more (%) 75.9 65.5 68.4 77.0 Married (%) 41.2 10.3 47.4 43.2 Income per month (mean, in dollars) 1,404 (SD = 1,109) 1,108 (SD = 1,063) 1,425 (SD = 1,102) 1,426 (SD = 1,112) Receives Medicaid (%) 81.5 89.7 73.7 81.3 Employed (%) 59.5 58.6 57.9 59.9

aAbuser was a current or former intimate partner. bAbuser was not a current or former intimate partner. cSD, standard deviation.

TABLE 2 Social and Behavioral Characteristics (%) of Abused and Non-Abused Women, Tuscaloosa, Alabama, 1993–1996

Total Abused—IPa Abused—Otherb Non-Abused Characteristic n = 439 n = 29 n = 19 n = 391 Missed ≥ 3 prenatal appointments (%) 29.6 44.8 31.6 28.4 No. of previous pregnancies (mean) 2.4 (SDc = 1.4) 2.7 (SD = 1.5) 2.3 (SD = 1.1) 2.4 (SD = 1.4) Previous miscarriage(s) (%) 26.0 31.0 15.8 26.1 Previous abortion(s) (%) 8.4 13.8 21.1 7.4 Contraception (%) 31.2 13.8 33.3 32.5 Pregnancy wanted (%) 62.5 48.3 61.1 63.7 Smoked during pregnancy (%) 32.6 48.3 36.8 31.2 Used alcohol during pregnancy (%) 28.0 44.8 47.4 25.8 Car owner (%) 84.9 75.9 94.4 85.1 Homeowner (%) 22.8 6.9 21.1 24.0 Material possessions (mean) 7.1 (SD = 2.5) 6.0 (SD = 3.0) 7.1 (SD = 2.4) 7.2 (SD = 2.5) Household crowding (%) 7.3 10.3 5.3 7.2 Depression (mean) 2.2 (SD = 1.1) 3.3 (SD = 0.9) 2.4 (SD = 1.2) 2.1 (SD = 1.1) SLEs (mean) 3.3 (SD = 2.0) 5.2 (SD = 2.0) 4.1 (SD = 2.2) 3.2 (SD = 2.0) Social support members (mean) 8.9 (SD = 4.5) 8.4 (SD = 4.2) 9.3 (SD = 5.0) 8.9 (SD = 4.5) Faith is source of support (%) 88.7 69.0 77.8 90.7 Attends religious service monthly or more (%) 60.3 44.8 61.1 61.4

aAbuser was a current or former intimate partner. bAbuser was not a current or former intimate partner. cSD, standard deviation; SLEs, stressful life events.

58 JOGNN Volume 33, Number 1 TABLE 3 TABLE 4 Bivariate Odds Ratios for Demographic Factors Bivariate Odds Ratios for Social and Behavioral Associated With Abuse During Pregnancy by Factors Associated With Abuse During Pregnancy an Intimate Partner, Tuscaloosa, Alabama, by an Intimate Partner, Tuscaloosa, Alabama, 1993–1996 (n = 431) 1993–1996 (n = 431)

Correlates Odds Ratio 95% Confidence Interval 95% Confidence Age 0.93 0.83–1.04 Correlates Odds Ratio Interval Ethnicity 1.46 0.74–2.89 Missed prenatal visits 1.76* 1.08–2.88 Education 0.57 0.26–1.27 No. of pregnancies 1.41 0.61–3.27 Married 0.15* 0.05–0.52 Miscarriages 1.32 0.58–3.00 Income 1.00 0.99–1.00 Abortions 1.81 0.59–5.51 Medicaid 2.00 0.59–6.77 Contraception 0.33* 0.11–0.97 Employed 0.94 0.44–2.02 Pregnancy wanted 0.54 0.25–1.15 Tobacco 2.03 0.95–4.33 *p < . 05. Alcohol 2.19** 1.02–4.69 Car ownership 0.54 0.22–1.31 They were less likely to own a car, home, or material Home ownership 0.24 0.06–1.04 goods. They suffered more household crowding, depression, and SLEs and professed less religious faith and reli- Material possessions 0.82* 0.69–0.98 gious service attendance (see Table 2). Distribution for Crowded household 1.50 0.43–5.24 most of the sociodemographic characteristics differed Depression 2.87** 1.90–4.34 between those abused by IPs and both those abused by Stressful life events 1.61** 1.32–1.96 others and those not abused. Women abused by others Social support 0.97 0.89–1.06 more closely resembled the nonabused group than they Faith as support 0.25*** 0.10–0.58 did those abused by IPs, with the exception of their edu- Religious service attendance 0.51 0.24–1.09 cation level, drinking, and previous abortions. Therefore, those abused by others were included with the nonabused *p < .05. **p < .0001. ***p < .01. in subsequent analyses and compared with the subgroup of women physically abused by IPs. TABLE 5 Bivariate logistic regressions yielded several statistical- Multiple Logistic Regression Model for Abuse ly significant associations: Physical abuse during pregnan- During Pregnancy by an Intimate Partner, cy by an IP was associated with unmarried status, more Tuscaloosa, Alabama, 1993–1996 (n = 431) missed prenatal appointments, lack of contraception, Adjusted 95% Confidence drinking during pregnancy, fewer material possessions, Correlates Odds Ratio Interval depression, more SLEs, and less faith in God or a higher power as a source of support (see Tables 3 and 4). In a full Contraception 0.21* 0.06–0.72 logistic regression model with all significant bivariates Faith as support 0.29* 0.10–0.87 entered, the best predictive model included lack of con- Depression 2.47** 1.54–3.95 traceptive use, lack of faith in God or a higher power, Stressful life events 1.56** 1.22–1.99 depression, and SLEs (see Table 5). In other words, the Marital status 0.28 0.07–1.08 risk of abuse increased 1.6 times for every SLE experi- Material possessions 0.87 0.71–1.06 enced, 2.5 times for every item of depression reported, 3.4 Missed prenatal visits 1.07 0.59–1.94 times if faith was lacking, and 4.6 times if contraception Alcohol 1.56 0.64–3.85 was not used. *p < .05. **p < .001. Discussion reports that most abused women delay entry into prena- Findings from this prospective study identified 10.9% tal care until the 3rd trimester, we suspect that the preva- of the 439 participants who were physically abused dur- lence rate would have been even higher had sampling not ing the current pregnancy, a rate comparable to the North been restricted to the 1st trimester for purposes of the American prevalence rate reported in the literature larger prospective study. (Amaro et al., 1990; Gazmararian et al., 1995; Helton et Fifteen percent (n = 66) of the sample reported abuse al., 1987; McFarlane et al., 1992). Because the literature in the year prior to pregnancy, whereas 11% (n = 48)

January/February 2004 JOGNN 59 reported abuse during pregnancy. This rate is in the mid- the literature (Campbell et al., 1992, McFarlane et al., dle range of what other studies have reported. McFarlane, 1992; McFarlane et al., 1996; Stewart & Cecutti, 1993). Parker, and Soeken (1996) reported 24.3% of their sam- The abused women in this study were less likely to pos- ple of 1,203 pregnant women had been abused in the past sess material goods (e.g., appliances or cars) and more year, with an overall rate of 16% who reported abuse likely to live in crowded residences. Of particular interest during pregnancy. Campbell et al. (1992) reported 11.2% was the association of abused women with the number of of their sample (n = 56) to be abused prior to or during SLEs, as this has been reported only recently in the litera- pregnancy, with 8.2% (n = 41) reporting abuse during the ture as correlated with risk of abuse in pregnancy current pregnancy only. In a sample of 548 pregnant (Cokkinides & Coker, 1998). A seemingly contradictory women, Stewart and Cecutti (1993) reported 10.9% (n = finding is that women abused by an IP are less likely to 60) of the women had been abused before pregnancy and use birth control yet are also less likely to want a child 6.6% (n = 36) were abused during pregnancy. Our find- once they have conceived. Possible explanations for this ings support the literature in that a past history of abuse may include an IP’s refusal to allow her to see a provider is one of the strongest predictors of abuse occurring in for contraception or to use barrier methods himself. Also, pregnancy (Stewart & Cecutti, 1993). abused women may be too depressed to take charge of Of those who reported abuse in the year before preg- their contraceptive needs. nancy, 59% (n = 39) also reported abuse during the cur- Previously untested variables in this study were reli- rent pregnancy. Looking at it from the reverse angle, gious faith and attendance at religious services. Both had women abused during pregnancy by an IP were more like- significant bivariate associations with abuse during preg- ly to have been abused in the year before pregnancy nancy; that is, lack of faith and lower attendance at reli- (86%) than were those women abused during pregnancy gious services correlated with higher levels of abuse, by someone other than an IP (74%). In comparison, though only religious faith remained in the final model McFarlane (1993) found only 55% of those reporting (see Table 5). The findings in this study suggest that faith abuse during the past year also reported abuse during may be important to these abused pregnant women as pregnancy, with the perpetrator almost always being the both a coping mechanism and stress buffer. Recent litera- IP. Clearly, the risk of continued abuse appears to be great ture has shown that people who have faith in God or a when the IP is the offender. higher power and attend religious services regularly have higher self-esteem and a stronger sense of belonging and, thereby, are better able to cope with stress (Miller, 1995). Whether this is a result of lifestyle or the supportive fel- mong women who have been abused in the lowship provided has yet to be determined. Spiritual A beliefs and religious practices are both associated with year before pregnancy, the risk of continued higher levels of life satisfaction and may serve as coping abuse appears to be greatest when the intimate strategies (Ellison, 1995). For women at risk of abuse, religious attendance may prevent social isolation, pro- partner is the offender. mote relaxation, and, thus, decrease depression, enabling them to negotiate conflict resolution or leave the relationship if necessary. Faith in God or a higher power could provide abused Sixty-two percent of the abused women reported being pregnant women with a sense of meaning and purpose in abused by an IP. This finding supports prior recommen- life as well as providing them with hope for the future. dations that all women should be routinely assessed by Perhaps an abused pregnant woman who did not have health care providers for IPV and should be screened at faith in God or a higher power felt less support when every prenatal visit, during delivery, and at postpartum dealing with SLEs, depression, and other problems, and, visits (Campbell et al., 1992), as screening has been thus, was less able to avoid the abuse. It could also be shown to be effective in detecting abused women (Stewart possible that the IP did not allow her to attend religious & Cecutti, 1993). Our study also demonstrates that the services, thereby increasing her isolation and depression. methodology of face-to-face interviews by trained health In addition, a lack of religious service attendance also care providers in a private setting without the IP being could have included women who previously may have present is effective in eliciting data on the prevalence of had faith, but because of the abusive experience began to abuse during pregnancy (McFarlane, 1993; McFarlane doubt God or a higher power. The possibility must also be et al., 1992; McFarlane et al., 1996). entertained that religious faith or beliefs could keep a The demographic characteristics of abused women woman in an abusive relationship. Clergy who do not shown in Table 1 were comparable to those reported in understand domestic violence may counsel the abused

60 JOGNN Volume 33, Number 1 woman to pray harder, be a better woman/wife, suffer her essential in reducing this health problem. Likewise, all lot in life, and reject divorce as an option (Burnett, 1996). health care providers must be educated in the prevention However, the associations found in this study do not sup- strategies for, assessment of, and intervention with port this. women who have experienced abuse (Campbell, 1992; Yam, 1995). These goals could easily be accomplished through continuing education programs. The findings also indicate there is a critical need for aith was found to be a buffer for abused research in several areas. Because this study revealed faith F to be instrumental, both as a potential coping mechanism pregnant women. and as a stress buffer, for abused pregnant women, more research is needed to explore the role of faith in health and healing. Faith-based initiatives could design interventions for abused women, particularly in rural areas where The percentage of women who experience violence community resources tend to be limited. More research is before pregnancy has been identified in the literature as needed into how to effectively assist abused women in an area that is difficult to compare among studies (Gaz- taking charge of their contraceptive needs to avoid mararian et al., 1996). This difficulty is due in part to unwanted pregnancies. The researchers saw firsthand the time periods not being clearly defined. For example, some importance of including spiritual assessment questions as studies may ask about violence in the past year, in the 12 a part of the patient interview. Holistic care must address months before pregnancy, or in the 12 months before spirituality and is certainly another area that needs to be delivery. As mentioned earlier, our research design, which further investigated. limited the study only to women in their 1st trimester of pregnancy, could have explained why we found a lower Conclusion percentage of abuse than some studies have reported. The overall best set of predictors of abuse during preg- Implications for Nursing nancy—depression, lack of contraceptive use, SLEs, and lack of faith in God or a higher power—may potentially This study reinforces the recommendations from sever- serve as clinical tools in the form of questions asked of al studies that women be routinely screened for IPV in all pregnant women to detect their risk of abuse. Replication health care settings (Bohn, 1990; Campbell, Oliver, & of this research is warranted to establish definitive guide- Bullock, 1993; Helton et al., 1987). Because previous lines for nursing practice. The previously untested vari- abuse increases one’s risk for abuse during pregnancy, ables of faith in God and religious service attendance need pregnant women should be assessed for IPV at every pre- more investigation so that spiritual interventions can be natal visit as well as at postpartum visits. The identifica- designed and tested for effectiveness. tion of abuse must be followed with accurate documentation, including the use of a body map for potential future legal action. Furthermore, this study also supports the need for face-to-face assessments for abuse. The best predictive model included stressful life Nurses must be prepared to intervene once abuse is disclosed. Because safety is the most important concern, a events, depression, lack of faith in God or a safety plan must be formulated immediately in addition to higher power, and lack of contraceptive use. educating the woman about abuse, her legal options, and available community resources (McFarlane et al., 1998). Hence, nursing students, as well as nurses in practice, should be taught how to assess for IPV and how to inter- Acknowledgments vene. Therefore, it is imperative for nursing programs to integrate IPV content in both theory and clinical compo- This study was supported by grant number R29-HD- nents. This integration should begin simply and become 29559 from the National Institutes of Health (NICHD). increasingly complex: Begin by having the student examine personal beliefs/judgmental attitudes about women REFERENCES who are abused; provide students statistical information about abuse; and teach students how to assess, intervene Amaro, H., Fried, L., Cabral, H., & Zuckerman, B. (1990). Vio- with, and empower abused women. Firsthand clinical lence during pregnancy and substance use. American Journal of Public Health, 80(5), 575-589. experience with families who are experiencing IPV is

January/February 2004 JOGNN 61 Bohn, D. K. (1990). Domestic violence and pregnancy: Implica- Gazmararian, J. A., Lazorick, S., Spitz, A. M., Ballard, T. J., tions for practice. Journal of Nurse-Midwifery, 35, 86-98. Saltzman, L. E., & Marks, J. S. (1996). Prevalence of vio- Burkhardt, M. A. (1994). Becoming and connecting: Elements lence against pregnant women: A review of the literature. of spirituality for women. Holistic Nursing Practice, 8(4), Journal of the American Medical Association, 275, 1915- 12-21. 1920. Burkhardt, M. A., & Nagai-Jacobson, M. (1985). Dealing with Guth, A. A., & Pachter, H. L. (2000). Domestic violence and the spiritual concerns of clients in the community. Journal of trauma surgeon. American Journal of Surgery, 179(2), Community Health Nursing, 2, 191-198. 134-140. Burnett, M. N. (1996). Suffering and sanctification: The reli- Hall, C., & Lanig, H. (1993). Spiritual caring behaviors as gious context of battered women’s syndrome. Pastoral reported by Christian nurses. Western Journal of Nursing Psychology, 44(3), 145-149. Research, 15(6), 730-741. Campbell, J. C. (1989). A test of two explanatory models of Helton, A. S., McFarlane, J., & Anderson, E. T. (1987). Battered women’s responses to battering. Nursing Research, 38, and pregnant: A prevalence study. American Journal of 18-24. Public Health, 77, 1337-1339. Campbell, J. C. (1992). Ways of teaching, learning and knowing Hillard, P. J. (1985). Physical abuse in pregnancy. Obstetrics and about violence against women. Nursing and Health Care, Gynecology, 66, 185-190. 13(9), 464-470. Holmes, T. H., & Rahe, R. H. (1967). The Social Readjustment Campbell, J. C. (1995). Addressing battering during pregnancy: Rating Scale. Journal of Psychosomatic Research, 11, Reducing low birth weight and ongoing abuse. Seminars 213-218. in Perinatology, 19(4), 301-306. Horan, D. L., Chopin, J., Klein, L., Schmidt, L. H., & Schul- Campbell, J. C., Oliver, C., & Bullock, L. (1993). Why batter- kin, J. (1998). Domestic violence screening practice of ing during pregnancy? AWHONN’s Clinical Issues in obstetrician-gynecologists. Obstetrics and Gynecology, Perinatal and Women’s Health Nursing, 4(3), 343-349. 92, 785-789. Campbell, J. C., Poland, M. L., Waller, J. B., & Ager, J. (1992). Hotaling, G. T., & Sugarman, D. B. (1986). An analysis of risk Correlates of battering during pregnancy. Research in markers in husband to wife violence: The current state of Nursing and Health, 158, 219. knowledge. Violence & Victims, 1, 101-124. Carson, V. B. (1989). Spiritual dimensions of nursing practice. Humphreys, J. (2000). Spirituality and distress in sheltered Philadelphia: Saunders. abused women. Journal of Nursing Scholarship, 32(3), Carson, V. B., & Arnold, E. N. (1996). Mental health nursing: 273-278. The nurse-patient journey. Philadelphia: Saunders. McFarlane, J. (1993). Abuse during pregnancy: The horror and Cokkinides, V. E., & Coker, A. L. (1998). Experiencing physical the hope. AWHONN’s Clinical Issues in Perinatal and violence during pregnancy: Prevalence and correlates. Women’s Health Nursing, 4(3), 350-361. Family and Community Health, 20(4), 19-37. McFarlane, J., Parker, B., & Soeken, K. (1996). Physical abuse, Dannenberg, A. L., Carter, D. M., Lawson, H. W., Ashton, smoking, and substance use during pregnancy: Preva- D. M., Dorfman, S. F., & Graham, E. H. (1995). Homi- lence, interrelationships, and effects on birth weight. Jour- cide and other injuries as causes of maternal death in New nal of Obstetric, Gynecologic, and Neonatal Nursing, 25, York City, 1987 through 1991. American Journal of 313-320. Obstetrics and Gynecology, 172, 1557-1564. McFarlane, J., Parker, B., Soeken, K., & Bullock, L. (1992). Ellison, C. G. (1995). Race, religious involvement and depres- Assessing for abuse during pregnancy: Severity and fre- sive symptomatology in a southeastern U.S. community. quency of injuries and associated entry into prenatal care. Social Science and Medicine, 40, 1561-1572. Journal of the American Medical Association, 267, 3176- Fehring, R., Miller, J., & Shaw, C. (1997). Spiritual well-being, 3178. religiosity, hope, depression, and other mood states in eld- McFarlane, J., Parker, B., Soeken, K., Silva, C., & Reel, S. erly people coping with cancer. Oncology Nursing Forum, (1998). Safety behaviors of abused women after an inter- 24(4), 663-671. vention during pregnancy. Journal of Obstetric, Gyneco- Fildes, J., Reed, L., Jones, N., Martin, M., & Barrett, J. (1992). logic, and Neonatal Nursing, 27, 64-69. Trauma: The leading cause of maternal death. Journal of Meraviglia, M. G. (1999). Critical analysis of spirituality and its Trauma, 32, 643-645. empirical indicators. Journal of Holistic Nursing, 17(1), Flitcraft, A. H. (1992). Violence, values, and gender. Journal of 18-33. the American Medical Association, 267, 3194-3195. Mickley, J., & Soeken, K. (1993). Religiousness and hope in Frye, V. (2001). Examining homicide’s contribution to pregnancy- Hispanic- and Anglo-American women with breast can- associated deaths. Journal of the American Medical Asso- cer. Oncology Nursing Forum, 20(8), 1171-1177. ciation, 285, 1510-1511. Mickley, J. R., & Carson, V. (1995). Religion and mental health: Gazmararian, J. A., Adams, M. M., Saltzman, L. E., Johnson, C. State of the science in nursing. Issues in Mental Health H., Bruce, C., Marks, J. S., et al. (1995). The relationship Nursing, 16, 345-360. between pregnancy intendedness and physical violence in Miller, M. A. (1995). Culture, spirituality, and women’s health. mothers of newborns. Obstetrics and Gynecology, 85, Journal of Obstetric, Gynecologic, and Neonatal Nurs- 1031-1038. ing, 24, 257-263.

62 JOGNN Volume 33, Number 1 Naumann, P., Langford, D., Torres, S., Campbell, J., & Glass, Stoll, R. I. (1989). The essence of spirituality. In V. B. Carson N. (1999). Women battering in primary care practice. (Ed.), Spiritual dimensions of nursing practice (pp. 4-23). Family Practice, 16(4), 343-352. Philadelphia: Saunders. Newman, B. (1989). The Neuman systems model: Application Straus, M. (1979). Measuring intrafamily conflict and violence: in nursing education and practice (2nd ed.). Norwalk, CT: The Conflict Tactics (CT) scales. Journal of Marriage and Appleton Century Crofts. the Family, 41, 75-88. O’Brien, M. E. (2003). Spirituality in nursing (2nd ed.). Boston: U.S. Department of Health and Human Services. (2000). Jones and Bartlett. Healthy people 2010: National health promotion and dis- Oths, K. S., Dunn, L. L., & Palmer, N. S. (2001). A prospective ease prevention objectives (DHHS publication number study of psychosocial job strain and birth outcomes. Epi- PHS 91-50212). Washington, DC: U.S. Government demiology, 12(6), 744-746. Printing Office. Parker, B., & McFarlane, J. (1991). Identifying and helping bat- Walker, L. (1984). The battered woman syndrome. New York: tered pregnant women. MCN: American Journal of Springer. Maternal Child Nursing, 16, 161-164. Watson, J. (1988). Nursing: Human science and human care, a Parker, B., McFarlane, J., & Soeken, K. (1994). Abuse during theory of nursing. New York: National League for Nurs- pregnancy: Effects on maternal complications and birth ing. weight in adult and teenage women. Obstetrics and Whitt, H. P. (1983). Status inconsistency: A body of negative Gynecology, 84, 323-328. evidence or a statistical artifact? Social Forces, 62(1), 201- Parker, B., McFarlane, J., Soeken, K., Torres, S., & Campbell, D. 233. (1993). Physical and emotional abuse in pregnancy: A Wiemann, E. M., Agurcia, C. A., Berenson, A. B., Volk, R. J., & comparison of adult and teenage women. Nursing Rickert, V. I. (2000). Pregnant adolescents: Experiences Research, 42(3), 173-178. and behaviors associated with physical assault by an inti- Piles, C. (1990). Providing spiritual care. Nurse Educator, mate partner. Maternal and Child Health Journal, 4(2), 15(1), 36-41. 93-101. Poole, G. V., Martin, J. N., Perry, K. G., Griswold, J. A., Lam- Yam, M. (1995). Wife abuse: Strategies for a therapeutic bert, C. J., & Rhodes, R. S. (1996). Trauma in pregnancy: response. Scholarly Inquiry for Nursing Practice: An The role of interpersonal violence. American Journal of International Journal, 9(2), 147-158. Obstetrics and Gynecology, 174, 1873-1876. Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psy- Linda L. Dunn, DSN, RN, CCE, is an associate professor, Cap- chological Measurement, 1(3), 385-401. stone College of Nursing, The University of Alabama, Reel, S. J. (1997). Violence in pregnancy. Critical Care Nursing Tuscaloosa. Clinics of North America, 9(2), 149-157. Rosenburg, M., & Fenley, M. A. (1991). Violence in America. A public health approach. New York: Oxford University Kathryn S. Oths, PhD, is an associate professor, Department of Press. Anthropology, The University of Alabama, Tuscaloosa. Stewart, D. E., & Cecutti, A. (1993). Physical abuse in pregnancy. Canadian Medical Association Journal, 149(9), Address for correspondence: Linda L. Dunn, DSN, RN, CCE, 1257-1263. Capstone College of Nursing, The University of Alabama, Box 870358, Tuscaloosa, AL 35487-0358. E-mail: ldunn@ bama.ua.edu.

January/February 2004 JOGNN 63 CLINICAL RESEARCH

Parents’ Perspectives on Decision Making After Antenatal Diagnosis of Congenital Heart Disease Gwen R. Rempel, Loryle M. Cender, M. Judith Lynam, George G. Sandor, and Duncan Farquharson

Objective: To discover and describe how One in 100 newborns in North America has con- prospective parents make decisions when they learn genital heart disease (CHD) (Botto, Correa, & of their baby’s congenital heart disease (CHD) during Erickson, 2001). Specialists in pediatric cardiology pregnancy, and to provide professionals with direc- and perinatology are diagnosing an increasing num- tion for their interactions with these families. ber of these babies antenatally, resulting in the new Design and Method: Qualitative analysis specialization of fetal cardiology (Sharland, 2001). informed by symbolic interactionism. Technological advances in pediatric cardiology, peri- Setting: A tertiary care women’s health center natology, and medical genetics have contributed to a that provided referral services for a province with a steady increase in fetal diagnoses of CHD since the population of 4 million. early 1980s (Allan & Hornberger, 2000). Develop- Participants: Mothers and fathers of 19 babies ments in perinatal fetal organ imaging by ultrasound with antenatally diagnosed CHD participated in inter- have had a significant influence on advances in fetal views during pregnancy and after the birth of their echocardiography and the increased incidence of baby. Thirty-four interviews were analyzed for com- antenatally diagnosed CHD (Kleinman & Copel, mon themes and distinguishing characteristics of ante- 1999). With the traditional abdominal approach to natal decision making. obstetric sonography, specialists can accurately diag- Results: Parents approached their antenatal nose heart defects as early as 16 to 20 weeks gesta- decisions regarding further testing and continuation of tion, whereas the transvaginal approach makes diag- the pregnancy as their first parenting decisions. They nosis of CHD possible at 12 weeks gestation made their decisions with differing degrees of appar- (Budorick & Millman, 2000). ent ease or deliberation, and some parents more In the early days of fetal diagnosis, the literature readily sought the opinion of professionals. The reflected physicians’ ambivalence as to whether the offered opinions offended some parents, even though perceived advantages of fetal diagnosis for the baby, the professionals may have intended the information including planning delivery to position the baby for as descriptive of options, not suggestive of a particu- optimal treatment after birth, outweighed the emo- lar decision. tional and psychological distress for the prospective Conclusion: Although advances in technology parents (Griffiths & Gough, 1985; Hutson et al., have enabled diagnosis of CHD antenatally, health 1985). The assumed positive outcomes for babies care professionals, including nurses, must elicit each antenatally diagnosed with CHD related to more parent’s particular perspective, be cognizant of their timely post-birth assessment and treatment at a spe- professional influence, and actively support parents cialized center (Allan, 1983; DeVore, 1998; Rossiter from the time of the antenatal diagnosis. JOGNN, 33, & Callan, 1993) and have been documented 64-70; 2004. DOI: 10.1177/0884217503261092 through outcome research (Bonnet et al., 1999; Sul- Keywords: Antenatal diagnosis—Congenital livan, 2002). The benefits for prospective parents, heart disease—Decision making—Fetal cardiology however, remain in question. Pediatric cardiologists (Allan & Hornberger, 2000) expressed concern Accepted: January 2003 about the intensity of parental responses at the time

64 JOGNN Volume 33, Number 1 of antenatal diagnosis, and Sharland (2000) recommend- the parents’ experience. None of the parents in that study ed nursing involvement with parents at the actual antena- regretted finding out about their baby’s CHD antenatally, tal diagnosis and throughout the remainder of the preg- but they did describe it as one of their most difficult life nancy. These concerns and recommendations, however, experiences. They felt isolated and described receiving continue to be physicians’ opinions that are not based on misinformation from general practitioners and family research from the parents’ perspective. members. These findings pointed to a need to further Research describing parents’ perception of their expe- understand the issues for parents over time and to specif- rience of fetal diagnosis reinforces the value prospective ically examine parents’ interactions with professionals in parents place on the antenatal information they receive. their decision making. Women who received a diagnosis of a fetal malformation The research questions that guided this larger qualita- at 32 weeks gestation were described as “emotionally tive study, therefore, were What are the issues parents unbalanced” for the remainder of their pregnancy and face when managing their experience of antenatal diag- having difficulty forming a “realistic” picture of their nosis of CHD? and How do parents draw upon others baby (Jorgensen, Uddenberg, & Ursing, 1985, p. 73). The (professionals and nonprofessionals) in managing these mothers, however, underscored that it was important to issues? This article focuses on the parents’ accounts of them for health care professionals to inform them of their their decision making and their related interactions with babies’ malformations at the time of diagnosis (Jorgensen health care professionals during the experience of their et al., 1985). Matthews (1990) reported similar findings baby’s antenatal diagnosis of CHD. in her study of antenatally diagnosed anomalies that were considered lethal. Another study of antenatal lethal Method anomalies that were antenatally diagnosed at 16 to 18 weeks gestation reiterated parents’ desire for antenatal information. This study also illustrated the parents’ expe- Population & Sample rience of not understanding the terminology used by Over a 2-year study period, 800 fetal echocardiograms health care professionals and of feeling that the counsel- were performed at a tertiary care center, which provided ing they received was biased toward discontinuing the referral services for a province with a population base of pregnancy (Chitty, Barnes, & Berry, 1996). 4 million persons. Eighty-nine of the fetal echocardio- Although these studies provided valuable research per- grams indicated diagnoses of structural heart disease in spectives regarding parents’ experience of antenatal diag- babies whose prospective parents then comprised the nosis, they did not address the antenatal diagnosis of con- study population. The women whose babies were antena- genital heart disease specifically. In many such cases, the tally diagnosed with CHD were referred to the fetal diag- prognosis is good, with favorable long-term outcomes nostic service, where they received consultation from spe- (Bonnet et al., 1999). In fetal cardiology, decisions are not cialists in perinatology, medical genetics, and pediatric limited to whether to continue or terminate the pregnan- cardiology. Women whose pregnancies were beyond 24 weeks gestation and who were planning to continue their pregnancy were invited, along with their partners, to participate in the study. A limitation of this study was that the sample included only prospective parents who contin- arents do not always understand the ued their pregnancies. This methodological decision P reflected the researchers’ clinical practice in fetal and terminology used by health care professionals pediatric cardiology, not obstetrics. Woman and their and may feel that antenatal counseling is biased partners who elected pregnancy termination received continued support from obstetric specialists and therefore toward discontinuing the pregnancy. were not the focus of this fetal/pediatric cardiology research. Nineteen mothers and 15 fathers, who were the parents of 19 babies, participated in a total of 34 interviews. cy, but also concern determining optimal treatment for Most of the interviews were conducted with the mother the baby (Allan & Hornberger, 2000). and father together. More than half of the participants One study formulated a beginning understanding of were first-time parents. Gestational age at time of antena- parental responses to antenatal diagnosis of CHD tal diagnosis ranged from 18 to 36 weeks, with a mean of through in-depth interviews with couples after their 24.7 weeks. There was a range of cardiac diagnoses, from baby’s birth (Rempel, 1993). Uncertainty, characterized a thickened pulmonary valve to hypoplastic left heart syn- by the phrase knowing but not knowing, was central to drome. Additionally, one baby was antenatally diagnosed

January/February 2004 JOGNN 65 with Trisomy 18, one with Trisomy 21, and one with a management of the antenatal diagnosis of their baby’s combination of genetic abnormalities. In addition to a CHD. heart problem, several babies had other antenatally diagnosed congenital anomalies, including bilateral clubfeet, Results hydrocephalus, multicystic dysplastic kidney, and absent kidney. The time-pressured nature of a progressing pregnancy and the evolving relationship between the parents and Design and Procedure their developing baby characterized the antenatal context Symbolic interactionism informed the design of this in which parents found out about their unborn baby’s qualitative study, which was based on the assumption that CHD. Uncertainty characterized the experience and com- people, in the context of their social interactions, create pounded the parents’ difficulty in incorporating a pro- and maintain meaningful worlds to make sense of their foundly changed image of their previously envisioned experiences and live within ever-changing realizations or healthy child. In the midst of struggling to come to terms interpretations (Blumer, 1969). Through data-gathering with the antenatal diagnosis, parents also needed to make interviews with parents, the researchers endeavored to decisions about further testing, continuing the pregnancy, understand and construct descriptions of the antenatal and treatment options for their baby after birth. A com- diagnosis experience from the parents’ perspective. These mon theme in the data was the parents’ descriptions of descriptions reflect the meaning parents ascribed to their their antenatal decisions as their first parenting decisions. experience. In analyzing these data, the researchers The value that these women and their partners placed on sought to achieve consensus while remaining open to new their parenting role during pregnancy was striking. For interpretations (Guba & Lincoln, 1994). example, one mother worried that her baby may have had We obtained ethical approval for this study through a lethal chromosomal abnormality in addition to the the university and agency ethical review panels and then heart problem and wanted genetic testing so that he proceeded to obtain data about parents’ experiences would not unknowingly be placed on life support after through in-depth, open-ended interviews. Most of the birth. She and her husband made their decision regarding interviews were conducted with both parents. Provisions amniocentesis to gain information that would help them were made for three interviews, the first during the preg- as parents make decisions “in the best interest” of their nancy, the second within 1 month of the baby’s birth, and baby. the third between 4 and 6 months later. It was not always possible to conduct all three interviews. In two instances, Different Approaches to Decision Making the baby was born before the planned interview. In addi- A key finding in this study concerned the parents’ dif- tion, two babies were transferred to other centers for ferent approaches to decision making and perceptions of treatment and parents therefore were not available for the the roles of the health care professionals in relation to second interview. In the end, 34 interviews were complet- making their parental decisions. Parents in this study ed. The audio-taped interviews were transcribed and analyzed by following procedures for qualitative data analysis. Data gathering and analysis occurred concurrently, and sampling was completed only when data analysis cat- common theme was the parents’ egories were saturated. Two individuals coded each inter- A view (usually the interviewer and one of the investiga- description of their antenatal decisions as their tors), and data and codes were entered into a qualitative first parenting decisions. data management program. Line-by-line coding yielded six main code categories, antenatal context, response to antenatal diagnosis, decision making, professional relationships, other relation- came to their decisions with differing degrees of apparent ships, and information, and 32 subcategories. Under the ease or deliberation. We offer observations of these dif- main category of decision making, the focus of this arti- ferences to enhance professional understanding of the cle, were the subcategories of further testing, option of complexity of client and family response and not as a pregnancy termination, treatment options for baby, val- means of categorizing prospective parents as to their deci- ues of health care professionals, values of parents, and sion-making style. values of others. Data analysis also consisted of comparing interviews with each other to distinguish similarities Decision Making . . . “That was the worst part” and differences in the parents’ overall experience and The data in this study indicated that some parents came to their decisions with less apparent ease than other

66 JOGNN Volume 33, Number 1 parents did. Some parents deliberated more over their “The decision was not hard” decisions: gathering further information, identifying the Conversely, the data indicated that some parents made pros and cons of each option, and reflecting on the impli- their decisions with more apparent ease than other par- cations of each decision for themselves, their child, and ents did. These parents alluded to an assumed or preex- their family. One recurrent topic for parental deliberation isting consensus between them as a couple regarding what related to concerns raised by professionals about chro- they would or would not do, and thus seemed to come to mosomal abnormalities such as Down syndrome. Parents their decisions with more apparent ease and less delibera- often pursued further testing to acquire chromosomal tion than other parents. For example, health care profes- information as they deliberated over pregnancy continua- sionals offered one woman amniocentesis because of a tion, and, in one case, about giving their baby up for positive triple screen result. Her response was, “And of adoption. course we declined because, we said, ‘Well, it doesn’t real- A sense of relief characterized the endpoint of the par- ly matter what you tell us this baby has, we are not going ents’ deliberation, as illustrated by their recollection of to terminate the pregnancy.’” the actual day they came to their decision. One such cou- Another couple facing the same choices regarding fur- ple, who found out about their unborn baby’s CHD the ther testing came to a different decision but similarly week before Christmas, explained, “So, New Year’s Eve described the ease with which they decided to have we kind of decided that we’d carry on. And, I think we amniocentesis. “That wasn’t a decision really . . . because slept great that night. That was the worst part. The diag- the risk . . . of an amnio, like miscarriage . . . was like 1% nosis was one thing, but to have to make that decision . . . And the 1% risk as opposed to the 99% of finding out ourselves was really quite cruel.” more about our baby and helping him.” These parents Couples whose decision-making experience was char- perceived amniocentesis as providing needed information acterized by less apparent ease described their need to for their parenting, and, therefore, their decision making explore their own and each other’s beliefs and perspec- was not characterized by considerable deliberation. Simi- tives as part of their decision-making process: larly, another woman stated, “The amniocentesis decision was not hard.” She went on to say that the decision to ter- We had to sit down and discuss what we were going to minate the pregnancy would also “not be hard” in the do, right? We had never done that before . . . we had event of a chromosomal problem but to follow through to see where our values lie . . . we’re from different reli- on the decision would be difficult. gions . . . that in itself comes into play, you know. On In relation to chromosomal abnormalities, parents Wednesday we made the decision. who came to their decisions with more apparent ease than Another common theme among the parents who delib- other parents had clear opinions about, for example, hav- erated more about their decisions was that they more ing a child with Down syndrome. Some parents were not readily sought the opinions of health care professionals concerned about Down syndrome: “Down syndrome . . . than other parents did. One father recalled the decision if that’s what we had, that’s what we would take . . . regarding having amniocentesis after the fetal echocardio- Down’s was not a concern for us.” In contrast, another gram: parent’s statement reflected a different perspective on chromosomal abnormalities: “If my baby would have had Remember making that decision? How many times I Down syndrome or spina bifida, I would not be pregnant asked the doctor . . . “What would you do? I know we right now.” are not you, and I know you can’t tell us what to do, Parents who deliberated less did not readily seek the but if it was your daughter, what would you tell her?” opinions of others and were offended when they per- . . . I tried. I asked about 20 different ways with dif- ceived that the health care professionals were presenting ferent wording, trying to get her [the doctor] to say information regarding available options in a biased man- something. ner. One couple found out that their baby had significant These parents were not seeking paternalistic advice. brain and kidney malformations in addition to a severe Rather, they felt that they needed the input of experts to congenital heart defect. At an appointment with the med- make “a smart medical decision.” One couple felt that ical geneticist, they felt that she had already decided that professionals viewed certain decisions as better than other pregnancy termination was the best option. Their percep- decisions, and when this couple decided to have amnio- tion of the appointment was as follows: “It was like, ‘Get centesis, the professionals’ offer of an immediate proce- on the table, let’s get this over with’ . . . very cold . . . dure led them to conclude that they had made the better ‘There’s no hope for your baby, so just give up now’ . . . decision. [That was] the worst part of the whole thing.” This cou-

January/February 2004 JOGNN 67 ple felt that any decisions about their baby were theirs to make and felt offended that the health care professional conveyed a bias toward a particular option. Nurses must gain an understanding of each Another mother had a detailed obstetric ultrasound examination and fetal echocardiogram at 35 weeks. The family’s beliefs and values and provide tests revealed a fetal heart problem and raised suspicion information and counseling that is responsive to regarding Trisomy 18. She recounted her interactions with health care professionals (the perinatologist and parents’ different decision-making approaches. pediatric cardiologist) “who were talking to [her] about terminating the pregnancy” as she still lay “half naked on a table”: That this perceived role of good parenting is already I could intellectually understand it [the offer of termi- established during pregnancy is not surprising. Previous nation], but emotionally, I went “WHAT!” and then I research on women’s decision making regarding antenatal asked, because medically it makes no sense to me. . . . testing revealed women’s desires to be a “good pregnant My exact words were “For what reason would I do person” (Gregg, 1993, p. 57) and a “proper” mother that at this point in my pregnancy?” And the answer (Santalahti, Hemminki, Latikka, & Ryynanen, 1998, p. that came back to me was “It would make it easier on 1072). Technological advances in perinatal medicine have the medical staff.” afforded women with many options for antenatal testing. However, perceived societal pressures to be a good par- In this situation, the health care professionals did not seek ent, even during pregnancy, result in women experiencing to understand the woman’s perspective. In light of her their reproductive choice as “a double edged sword” desire to proceed to a natural delivery for a chance to (Gregg, 1993, p. 69). Parents in this study valued the hold her baby before he died, the professionals’ offer of a information they received about their child in the antepar- single option that ensured the baby would be stillborn tum. When they perceived recommendations for further made her “furious” and sad for the professionals. Having antenatal testing as linked to the option of pregnancy ter- reflected on this experience for several weeks, she had this mination, however, their perceptions of being good par- advice for professionals, given in the context of the inter- ents were threatened. view: The health care professionals who offended the woman [Don’t] assume any one emotion or way of dealing by their recommendation of late termination needed with it, but ask a whole lot of questions before you insight into parent-professional interactions. Perhaps, in make statements. . . . I recognize that that’s asking a lot the professionals’ view, only one option was available to of the people in the profession. ameliorate this grave situation. The parents’ accounts of such interactions, however, drew attention to decision making as having multiple dimensions, including the par- Discussion ents’ own appraisal of their goals, intentions, and capaci- Contrary to the preceding quote, a statement of appar- ties. Effective parent-professional interactions provide an ent resignation, we think it is not “asking a lot of the peo- opportunity for health care professionals to gain an ple in the profession” to expect health care professionals explicit understanding of how the information and asso- to recognize that prospective parents differ in their ciated counseling they provide interfaces with prospective approaches to antenatal decision making. Health care parents’ beliefs and values. professionals, including nurses, must take the necessary Clinicians and researchers have extensively discussed time to understand each family’s unique perspective and information provision for and counseling of women, their provide information and counseling in a manner that partners, and family members in perinatal medicine demonstrates an appreciation of different decision- (Burke & Kolker, 1994; Kessler, 1997), and prospective making approaches and beliefs about parenting. parents in pediatric cardiology (Sandor, 1996; Women and their partners in this study asserted the Shinebourne & Carvalho, 1996). There is agreement that value of their unborn baby and viewed their antenatal information provided regarding further testing, pregnan- decisions as their first parenting decisions. Research on cy termination, and various treatment options is intended information parents’ postnatal decision making concerning medical to be just that— regarding options. The treatment for infants with life-threatening anomalies iden- accounts of parents in this study, however, raised concern tified the prevalent theme of being a good parent and pro- about parental perceptions of how health care profession- posed a model in which parents seek to make decisions als provided this information. The accounts of parents in consistent with their view of parental obligations and this study indicated that the professionals lack an under- commitments (Rushton, 1994). standing of the experiences and perspectives of parents.

68 JOGNN Volume 33, Number 1 Additionally, parents in this study did not view pater- values and desire to make antenatal decisions in the best nalistic approaches by health care professionals as accept- interest of their child. This research provides further able. Did the antenatal context afford parents time to insights into health care professionals’ responsibility to make their decisions, in contrast to parents of infants who understand the beliefs and perspectives of those they experienced life-threatening problems immediately after inform and counsel regarding CHD during pregnancy. birth? Research on parents’ decision making regarding These findings also draw attention to issues faced by pediatric cardiac transplantation indicated that some par- health care professionals. Do professionals feel powerless ents preferred a paternalistic model of decision making. in situations in which they are providing devastating Parents allowed physicians to guide them in decision information to prospective parents? Do professionals making regarding cardiac transplantation for their child have reservations about the capacity of prospective par- and relied on the professionals’ recommendations (Hig- ents to manage the sequelae of such serious conditions as gins, 2001). In contrast, parents in this study were offend- hypoplastic left heart syndrome or Trisomy 18 and there- ed when professionals provided information and counsel- fore provide information and counseling in a particular ing in what the parents perceived as a biased manner. manner? With the antenatal diagnosis of CHD, prospective par- Technological advances in obstetric screening and ents are parachuted into a complex health care environ- antenatal diagnosis of CHD have created a new context ment characterized by multiple interactions with numer- for interactions between parents and health care profes- ous health care professionals. The parents in the current sionals. Nurses have a key role to play in ensuring that study expected collaborative dialogue with professionals. parents’ needs for collaboration in decision making are Other research has pointed to the relationship between met in the many interactions they have with health care changing health care environments characterized by cure- professionals during their experience of antenatal diagno- focused technological advances and an accompanying sis of CHD. Advanced practice nurses in obstetrics, shift in client-professional relationships (Thorne & neonatology, and pediatric cardiology must include these Robinson, 1988). Thorne and Robinson’s research docu- parents in their caseloads to ensure that they receive the mented the ways in which health care relationships information and counseling they need to make antenatal change over time: When parent-professional relationships decisions. Moreover, further research from a nursing per- begin, parents often have blind faith in the expertise of spective is required to provide a basis for effective inter- the health care professional. As the relationship progress- vention and to evaluate professionals’ information provi- es, the parents become more aware of options that may sion and counseling approaches in the antenatal context. differ from those being proposed or enacted. Although some parent-professional relationships evolve to become Acknowledgment more nonhierarchical and collaborative (Cender, 1995; Thorne & Robinson, 1988), findings from this study indi- This research was funded by a British Columbia Chil- cate that parents, even those who were first-time parents, dren’s Hospital Miracle Telethon New Research Award entered into their health care relationships with expecta- and supported by the Perinatal Clinical Research Centre tions for nonpaternalistic, collaborative interaction. of the University of Alberta. Thanks to the parents who Research about health care relationships has generally participated in this research, and to Sharon Connaughty, assumed that they are ongoing (Keller & Carroll, 1994; Tam Donnelly, and Rhonda Harris for their assistance. Thorne & Robinson, 1988). Findings from this study, however, indicate that these relationships were not always REFERENCES ongoing. Some parents had only one or two interactions with medical genetics professionals. As they moved from Allan, L. D. (1983). Early detection of congenital heart disease the antepartum to the postpartum, they had less contact in prenatal life. Clinics in Obstetrics & Gynecology, with perinatology professionals and increased interaction 10(3), 507-514. with nurses, physicians, and other professionals in Allan, L. D., & Hornberger, L. K. (2000). Parental counseling. pediatric cardiology and cardiovascular surgery. If parent- In L. D. Allan, L. K. Hornberger, & G. Sharland (Eds.), professional interactions in the antepartum set the tone Textbook of fetal cardiology (pp. 399-406). London: Greenwich Medical Media. for future relationships, it is even more important that Blumer, H. (1969). Symbolic interactionism: Perspective and health care professionals meet parents’ expectations for method. Englewood Cliffs, NJ: Prentice Hall. collaboration right from the start. Bonnet, D., Coltri, A., Butera, G., Fermont, L., LeBidois, J., The parents’ accounts of their experiences generated Kachaner, J., et al. (1999). Detection of transposition of through this research have drawn attention to the the great arteries in fetuses reduces neonatal morbidity parental capacity for antenatal decision making. The and mortality. Circulation, 99(7), 916-918. basis of those decisions was parents’ personal beliefs and

January/February 2004 JOGNN 69 Botto, L. D., Correa, A., & Erickson, J. D. (2001). Racial and ter’s thesis, University of British Columbia, Vancouver, temporal variations in the prevalence of heart defects. Canada. Pediatrics, 107(3), e32. Rossiter, J. P., & Callan, N. A. (1993). Prenatal diagnosis of Budorick, N. E., & Millman, S. L. (2000). New modalities for congenital heart disease. Obstetrics & Gynecology Clinics imaging the fetal heart. Seminars in Perinatology, 24(5), of North America, 20(3), 485-496. 352-359. Rushton, C. H. (1994). Moral decision making by parents of Burke, B. M., & Kolker, A. (1994). Directiveness in prenatal infants who have life-threatening congenital disorders. genetic counseling. Women & Health, 22(2), 31-53. Unpublished doctoral dissertation, Catholic University of Cender, L. M. (1995). The experience of caring for a child with America, Washington, DC. a medically fragile condition at home: Perceptions of par- Sandor, G. G. (1996). Fetal diagnosis of congenital heart dis- ents. Unpublished master’s thesis, University of British ease. Cardiology in the Young, 6, 259-260. Columbia, Vancouver, Canada. Santalahti, P., Hemminki, E., Latikka, A., & Ryynanen, M. Chitty, L. S., Barnes, C. A., & Berry, C. (1996). Continuing with (1998). Women’s decision-making in prenatal screening. pregnancy after a diagnosis of lethal abnormality: Experi- Social Science & Medicine, 46(8), 1067-1076. ence of five couples and recommendations for manage- Sharland, G. (2000). What should be provided by a service for ment. British Medical Journal, 313, 478-480. fetal cardiology? Cardiology in the Young, 10, 625-635. DeVore, G. R. (1998). Influence of prenatal diagnosis on con- Sharland, G. (2001). Fetal cardiology. Seminars in Neonatology, genital heart defects. Annals of the New York Academy of 6, 3-15. Sciences, 847, 46-52. Shinebourne, E. A., & Carvalho, J. S. (1996). Ethics of fetal Gregg, R. (1993). “Choice” as a double-edged sword: Informa- echocardiography. Cardiology in the Young, 6, 261-263. tion, guilt and mother-blaming in a high-tech age. Women Sullivan, I. D. (2002). Prenatal diagnosis of structural heart dis- & Health, 20(3), 53-73. ease: Does it make a difference to survival? Heart, 87(5), Griffiths, D. M., & Gough, M. H. (1985). Dilemmas after ultra- 405-406. sonic diagnosis of fetal abnormality. The Lancet, 1(8429), Thorne, S., & Robinson, C. (1988). Health care relationships: 623-624. The chronic illness perspective. Research in Nursing and Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in Health, 11, 293-300. qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 105-117). London: Sage. Gwen R. Rempel, RN, MSN, is a doctoral candidate, Faculty of Higgins, S. S. (2001). Parental role in decision-making about Nursing, University of Alberta, Edmonton, Alberta, Canada. pediatric cardiac transplantation: Familial and ethical considerations. Journal of Pediatric Nursing, 5(16), 332- 337. Loryle M. Cender, RN, MSN, is a clinical nurse specialist, Chil- Hutson, J., MacKenzie, U., Young, D. G., McNay, M., Whittle, dren’s & Women’s Health Centre of British Columbia, Vancou- M., & Raine, P. (1985). Antenatal diagnosis of surgical ver, British Columbia, Canada. disorders by ultrasonography. The Lancet, 1(8439), 621- 623. M. Judith Lynam, RN, MSN, is an associate professor, Faculty Jorgensen, C., Uddenberg, N., & Ursing, I. (1985). Diagnosis of of Nursing, University of British Columbia, Vancouver, British fetal malformation in the 32nd week of gestation: The Columbia, Canada. psychological challenge to the woman and the doctor. Journal of Psychosomatic Obstetrics and Gynecology, 4, George G. Sandor, MB, ChB, FRCP(C), FRCP(E), FACC, is a 73-82. pediatric cardiologist, Children’s & Women’s Health Centre of Keller, V., & Carroll, G. (1994). A new model for physician- British Columbia, and a professor, Faculty of Medicine, Uni- patient communication. Patient Education and Counsel- versity of British Columbia, Vancouver, British Columbia, ing, 23, 131-140. Canada. Kessler, S. (1997). Psychological aspects of genetic counseling: XI. Nondirectiveness revisited. American Journal of Med- Duncan Farquharson, MD, FRCSC, is a perinatologist, Royal ical Genetics, 72(2), 164-171. Columbian Hospital in New Westminster, British Columbia, Kleinman, C. S., & Copel, J. A. (1999). Prenatal diagnosis of and a professor, Faculty of Medicine, University of British structural heart disease. In R. K. Creasy & R. Resnik Columbia, Vancouver, British Columbia, Canada. (Eds.), Maternal-fetal medicine (pp. 207-215). Philadel- phia: W. B. Saunders. Address for correspondence: Gwen R. Rempel, RN, MSN, Fac- Matthews, A. L. (1990). Known fetal malformations during ulty of Nursing, University of Alberta, 3rd Floor, Clinical Sci- pregnancy: A human experience of loss. Birth Defects: ences Building, Edmonton, AB, Canada, T6G 2G3. E-mail: Original Article Series, 26(3), 168-175. [email protected]. Rempel, G. (1993). Knowing but not knowing: Parents’ experience of antenatal diagnosis of CHD. Unpublished mas-

70 JOGNN Volume 33, Number 1 CLINICAL RESEARCH

More Than Just Menstrual Cramps: Symptoms and Uncertainty Among Women With Endometriosis Gail Schoen Lemaire

Objective: To examine the frequency, severity, inform and support patients are needed. JOGNN, 33, interference with daily life, and symptom distress 71-79; 2004. DOI: 10.1177/0884217503261085 associated with endometriosis and to explore the rela- Keywords: Emotional distress—Endometriosis— tionships among symptoms, emotional distress, uncer- Preference for information—Symptoms—Uncertainty tainty, and preference for and adequacy of informa- Accepted: March 2003 tion. Design: A descriptive, cross-sectional correlational study. Endometriosis is a complex, poorly understood Setting: Data were collected at a conference of chronic illness of women in their reproductive years. the Endometriosis Association in Milwaukee, Wiscon- The disease is characterized by the presence, outside sin. the uterus, of functioning glands and stroma that are Participants: A convenience sample of 298 similar to those found in the endometrium or lining women attending an educational program. of the uterus. Endometriosis has been found in Main Outcome Measures: Endometriosis symp- almost all body tissues and organs, except for the toms and symptom distress, emotional distress, and spleen, and may appear as small lesions or implants adequacy of information were assessed using author- or larger lesions known as endometriomas (Rock & developed scales. Preference for information was Markham, 1992). Pelvic pain, dysmenorrhea, dys- measured by a revision of the Krantz Health Opinion pareunia, and infertility are common symptoms of Survey Information Subscale. Uncertainty was the disease. Because no cure for endometriosis exists, assessed using the Mishel Uncertainty in Illness treatment is aimed at reducing symptoms, achieving Scale–Community Form. pregnancy when desired, and preventing pain and Results: Women experienced multiple symptoms progression of the disease through the use of hor- associated with varying levels of distress, including monal medication or surgery. The etiology of symptoms not typically associated with endometriosis. endometriosis remains unclear, but it is probably Participants sought out information but were undecid- multifactorial, involving hormonal, immune, and ed about whether they had sufficient information environmental factors (Rock & Markham, 1992). about the disease. Uncertainty about endometriosis Typically, recurrent ectopic bleeding within the was relatively high and associated with emotional dis- pelvis results in pelvic pain and disease progression tress and lack of information about the disease. (Brosens, 1997). Differential diagnosis of Conclusions: Reported symptoms demonstrate endometriosis requires both laparoscopy and histo- the complexity and impact of endometriosis. Women’s logic documentation of disease (Redwine, 1994; preference for information and experience of emo- Reiter, 1998). tional distress and uncertainty suggest the need for Because of variability in its definition and incon- information and support. Prospective, controlled stud- sistency in diagnostic methods, the prevalence of ies on the impact of endometriosis and interventions to endometriosis is unknown. Based on data from the

January/February 2004 JOGNN 71 1984 to 1992 National Health Interview Survey, the relieves pain, this surgery is not an option for women who prevalence of endometriosis in the United States was esti- wish to maintain their fertility. Additionally, women’s mated at 6.9 per 1,000 women, with an estimated responses to hysterectomy appear to vary by age and 323,058 women affected annually by the disease whether or not they have completed childbearing. In a (Kjerulff, Erickson, & Langenberg, 1996). In the United study comparing younger and older women who had a States, endometriosis is second only to uterine leiomyoma hysterectomy, older women and women younger than age (uterine fibroids) as an indication for hysterectomy, a pro- 30 obtained similar relief from pain, although younger cedure associated with substantial morbidity (Lepine et women were more likely to report residual dyspareunia al., 1997). Between 1988 and 1993, of 3,350,961 hys- and dysuria. Younger women also were more likely to terectomies, an estimated 631,657 (18.9%) were per- have not completed childbearing and to report a sense of formed for endometriosis. These procedures were per- loss and reduced ability to meet family responsibilities formed primarily on women of reproductive age (Lepine and engage in social activities after surgery (MacDonald, et al., 1997). Endometriosis is costly and disruptive to Klock, & Milad, 1999). Pelvic pain is a common and women’s daily lives. National Health Interview Survey often severe symptom of endometriosis and is more often findings (1984–1992) showed that one half of women associated with decreased quality of life than other types with endometriosis reported being bedridden an average of pain (Rannestad, Eikeland, Helland, & Qvarnstrom, of 17.8 days during the previous 12 months (Kjerulff et 2000). Two prospective, short-term studies found that al., 1996). In 2000, endometriosis accounted for 86,291 prior to surgery, women with endometriosis reported sig- hospital discharges, with a mean length of stay of 2.6 nificant pain and decreased quality of life (QOL). Surgi- days. Estimated mean charges were $884 million for hos- cal excision of disease resulted in reduced pelvic pain and pitalization alone (HCUPnet, Healthcare Cost and Uti- improved QOL (Garry, Clayton, & Hawe, 2000). lization Project, 2000). Two North American consensus Gonadotropin-releasing hormone (GnRH) agonists, conferences have emphasized the lack of published which work by suppressing ovulation and inducing reports on women’s perceptions of endometriosis symp- pseudomenopause, frequently are used to treat toms and treatment. At both conferences, the need for endometriosis. Administration of the GnRH agonist, research focusing on the effects and impact of this disease nafarelin, was found to reduce pain and improve QOL in on women was stressed (Canadian Medical Association, women with the disease. Another commonly used GnRH 2001; National Institutes of Health, 1995). agonist, leuprolide, however, was not as effective in reducing pain or improving life quality (Zhao, Kellerman, Francisco, & Wong, 1999). Because similar agents may lead to different results, it can be difficult for women to espite the cost to the health care system predict treatment outcomes. Other findings have shown a D significant but temporary increase in pelvic pain and a and women’s lives, the effects of endometriosis decrease in QOL associated with the stimulatory phase of and its impact on women have been GnRH agonist therapy (Miller, 2000). Unless women receive specific information about the initial effects of infrequently studied. such treatment, those who develop increased pain early during treatment may experience uncertainty related to the temporary increase in symptoms and distress caused by GnRH agonist therapy. Literature Review Few studies have examined the emotional impact of endometriosis. One of the first studies to examine such The goals of endometriosis treatment are to reduce effects of the disease found that women vary in their emo- painful symptoms, to decrease disease progression, and to tional responses and may experience shock, denial, disbe- achieve pregnancy when a woman chooses. Studies exam- lief, fear, anxiety, helplessness, lack of control, loss, isola- ining women’s long-term response to treatment are few tion, and lack of support (Weinstein, 1988). Christian (Winkel & Scialli, 2001). Retrospective findings suggest (1993) found that symptoms, including chronic severe that commonly used medical and surgical treatments pelvic and menstrual pain, negatively affected women’s result in minimal long-term symptom relief (Lemaire, mood and interfered with their social and family life. 1996). Among women with chronic pelvic pain, those Waller and Shaw (1995) found similar, normal levels of with endometriosis reported the greatest amount of anxiety in women with and without endometriosis but health-related distress and interference with life activities significantly greater depression among women with as a result of their pain (Mathias, Kupperman, Liberman, chronic pelvic pain, despite its etiology. Although women Lipschutz, & Steege, 1996). Although hysterectomy often with chronic pelvic pain may experience significant dis-

72 JOGNN Volume 33, Number 1 tress that can impair their psychological functioning, find- treatment. Lack of information about the illness, or a ings indicate that psychological factors do not place health care provider’s lack of knowledge about the condi- women at risk for developing endometriosis (Waller & tion and its treatment, can increase uncertainty. A search Shaw, 1995). from 1966 forward of CINAHL, Medline, PsychINFO, Women’s emotional response to endometriosis and its Medscape, and HealthSTAR revealed no published treatment may be influenced by many factors. Uncertain- reports about uncertainty and emotional distress associat- ty is an individual’s perception of the degree of ambigui- ed with endometriosis. Studies that explore women’s ty, complexity, inconsistency, and unpredictability associ- information preferences and adequacy of information ated with illness and illness-related events (Mishel, 1984, about endometriosis and associated uncertainty have not 1990b). Unclear prognosis, lack of illness-related infor- been reported. Furthermore, few studies have examined mation, or unpredictability of symptoms may result in women’s perceptions of symptoms associated with this uncertainty (Mishel, 1984, 1988). The experience of disease. uncertainty is inherent in chronic illness, the effects of Nurses who understand the physical and emotional which often persist day after day, week after week, year impact of the disease are better able to provide effective after year (Strauss et al., 1984). Researchers suggest that care for women with endometriosis. The impact of uncer- illness-related uncertainty is an aversive experience that tainty and the extent to which individual women prefer may result in emotional distress and relationship and endometriosis-related information should be assessed. adjustment difficulties (Hilton, 1988; Loveys & Klaich, The purpose of the current study was to examine the 1991; Mishel, 1984, 1997b; Mishel & Braden, 1988; nature of endometriosis symptoms and explore the rela- Mishel, Hostetter, King, & Graham, 1984; Warrington & tionships among women’s symptoms, emotional distress, Gottlieb, 1987). Previous studies have suggested that uncertainty, and preference for and adequacy of informa- uncertainty may increase an individual’s emotional dis- tion about the disease. Findings from this study can pro- tress and hinder adjustment to illness (Anderson & vide a basis for interventions designed to help women Walsh, 1998; Christman et al., 1988; Deane & Degner, obtain information about the disease, manage their symp- 1998; Mishel, Padilla, Grant, & Sorenson, 1991; Mishel toms and emotional distress, and reduce uncertainty. & Sorenson, 1991). The experience of uncertainty during illness also appears to result in decreased QOL (Braden, Materials and Methods 1990; Carroll, Hamilton, & McGovern, 1999). Increased uncertainty may reduce an individual’s perceived sense of A cross-sectional, descriptive correlational design and control, lessen resourcefulness, and hinder ability to han- written self-report survey were used to examine the sam- dle adverse situations associated with illness (Braden, ple at a specific point in time. The nonprobability, con- 1990; Dirksen, 2000). venience sample was composed of women attending the Providing information can help to reduce uncertainty. 1995 15th Anniversary Conference of the Endometriosis Having sufficient information enables patients to better Association held in Milwaukee, WI. Only women ages 18 understand illness-related events (Mishel, 1988). Patients and older and surgically diagnosed with endometriosis differ in their preference for illness-related information were eligible to participate. Of the 515 women who because of both individual differences and factors specif- attended, 315 agreed to participate, for an overall ic to their illness (Krantz, Baum, & Wideman, 1980). response rate of 61%. Seventeen women were ineligible When patients receive adequate information, they are bet- for the following reasons: age under 18 (n = 1), lack of ter able to cope, participate in health care decision mak- surgical diagnosis (n = 6), substantial amount of missing ing, and deal with the uncertainty associated with illness data (n = 8), new diagnosis of co-existing multiple sclero- (Miller, 1992). Previous studies have shown that uncer- sis (n = 1), and pregnancy (n = 1). Thus, 298 (95%) of the tainty is reduced for patients who seek information about returned surveys were used in the analyses, representing their illness (Braden, 1990; Miller, Summerton, & Brody, an overall 58% return rate. Data were not available on 1988; Mishel, 1997b). Patients who have acquired more those who elected not to participate. knowledge about their condition are less likely to experience uncertainty (Braden, 1991; Lemaire & Lenz, 1995). Data Collection Nurses have a key role in assisting patients to obtain and The institutional review board of the university affili- understand information. ated with the researcher approved the study for exempt Endometriosis is a complex, poorly understood dis- status, and data were collected during the aforementioned ease. Because no cure exists and treatment effectiveness conference. A request for participation was announced at varies, women may not be able to predict the outcome of the beginning of the conference program, and participants the disease and its treatment. Patients may experience were encouraged to complete the study forms as soon as uncertainty associated with endometriosis diagnosis or possible and return them to the designated area. Potential

January/February 2004 JOGNN 73 participants received a description of the purpose of the Emotional Distress. To reduce participant burden, an research, its voluntary nature, and information on the investigator-developed scale rather than multiple, lengthy procedure and risks and benefits. Data were collected existing instruments was used to measure emotional dis- anonymously, and consent was assumed if participants tress. The 15-item Feelings and Reactions scale (FAR), completed the study forms. To increase response rate, an developed based on literature and existing scales, meas- incentive in the form of a gift certificate drawing was ured overall emotional distress, including anxiety and offered for each 100 surveys returned. All surveys used in depression, perceived life quality, and social support. the analyses were returned to the investigator before the Items were measured using a 0 (none of the time) to 8 (all close of the conference. of the time) frequency scale, with higher scores representing greater emotional distress. The FAR demonstrated ini- Instruments tial convergent validity when compared with two widely used scales, the Beck Depression Inventory (Beck, 1967) Endometriosis Symptoms. The author developed a and the Spielberger State Anxiety Inventory (Spielberger, symptom checklist consisting of a fixed list of 20 physical Gorsuch, Lushene, Vagg, & Jacobs, 1983). Because inter- and emotional symptoms. Women evaluated each symp- nal consistency reliability was relatively high (alpha = .88) tom in terms of its frequency, severity, and interference for the 15-item scale, the total FAR score representing with their daily life during the past 12 months. Symptom overall emotional distress was used in the study analyses. characteristics each were measured on a 0-3 scale, with higher scores indicating greater frequency, severity, and Data Analysis interference. Alpha reliabilities for the symptom frequen- Descriptive statistics were computed on all study vari- cy, severity, and interference scales were .82, .85, and .87, ables. Categorical variables were summarized by frequen- respectively. A composite of the total frequency, total cies and percentages. Continuous variables were summa- severity, and total interference scores yielded the total rized as the mean, plus or minus the standard deviation. symptom distress (TSD) score, an indication of overall The distribution for continuous variables was examined symptom distress. The coefficient alpha reliability for the and found to be normal. Cronbach’s alpha coefficients TSD was .94. were obtained for scales to provide evidence of their reli- Perceived Uncertainty. The Mishel Uncertainty in Ill- ability. Relationships among scale scores were tested ness Scale–Community Form (MUIS-C) (Mishel, 1990a) using Pearson’s product-moment correlation coefficients. was used to measure perceived uncertainty. The MUIS-C An alpha level of .05 was used for all statistical tests. measures ambiguity, complexity, inconsistency, and unpredictability regarding the illness. The scale is a 23- Results item, one-factor Likert-type scale with a 1 (strongly disagree) to 5 (strongly agree) scale. Total possible scores range from 23 to 115, with higher scores reflecting Sample greater uncertainty. Mishel has reported normative data Two hundred ninety-eight women participated in the for the MUIS-C, with moderate to high alpha reliabilities study. The mean age of participants was 34 (SD = 7.10). ranging from .74 to .92 (Mishel, 1997a). For the current More than one half (58%) of the women were married, sample, the coefficient alpha reliability was .88. and nearly one third (32%) were single or never married. A large proportion (71%) of participants had a college or Preference for Information. To measure women’s pref- postcollege degree, and most were White (93%). Partici- erence for information about endometriosis, the author pants’ median income was in the $41,000 to $60,000 developed three new items and adapted seven items from range, and 29% reported incomes of $61,000 or greater. the Krantz Health Opinion Survey–Information Subscale More than one third (39%) of participants reported that (HOSI) (Krantz et al., 1980). The HOSI was modified they had been members of the Endometriosis Association from its original binary agree/disagree format to a 5-point for 1 to 3 years, and one quarter reported membership of Likert-type scale to increase reliability. The coefficient 4-7 years. alpha reliability was .78 for the 10-item scale. Adequacy of Information. Women’s perceptions of the Symptoms adequacy of their information about endometriosis were The total number of symptoms reported ranged from 0 measured by six author-developed items comprising the (no symptoms) to 20 (M = 14.59 ± 3.80). Only 4 women Perceived Knowledge Questionnaire (PKQ), which elicit- (1.0%) reported no symptoms, and 17 women (6.0%) ed self-report of the amount and adequacy of women’s reported having all 20 symptoms. The frequency of knowledge about endometriosis. The PKQ uses a 1 reported symptoms is shown in Table 1. Women’s reports (strongly disagree) to 5 (strongly agree) Likert-type scale. of total symptom distress (TSD) of individual symptoms For this sample, the coefficient alpha reliability was .72. are shown in Table 2. The three symptoms with the high-

74 JOGNN Volume 33, Number 1 TABLE 2 TABLE 1 Total Symptom Distress (TSD), From Most to Least Frequency of Endometriosis-Related Symptoms Distressing (N = 298a) Reported During the Past 12 Months (N = 298) Symptom MSD Most of Some of Never/ Fatigue or weariness 6.24 2.30 the Time the Time Seldom Menstrual cramping 6.23 2.56 n % n % n % Nonperiod pelvic pain 5.41 2.27 Menstrual crampinga 150 58.9 63 24.7 42 16.5 Lower back pain 5.19 2.52 Fatigue/weariness 146 49.7 120 40.8 28 9.2 Headache 5.06 2.58 Lower back pain 106 36.0 129 43.9 59 20.1 Depressed feelings 5.05 2.55 Heavy menstrual flowa 88 34.5 89 34.9 78 30.5 Pain with intercourseb 4.67 2.99 Non-period pelvic pain 90 30.8 146 50.0 56 19.2 Heavy menstrual flow 4.63 2.91 Diarrhea with perioda 77 29.8 74 28.7 107 41.5 Anxious feelings 4.32 2.63 Allergy 85 29.1 77 26.4 130 44.5 Constipation 3.91 2.79 Urinary frequency 85 29.1 82 28.1 125 43.8 Muscle and/or bone pain 3.90 2.91 Pain with intercourseb 71 27.2 92 35.2 98 37.5 Frequent urination 3.87 2.96 Depressed feelings 63 21.6 157 53.8 72 24.6 Hay fever/allergy 3.85 3.22 Constipation 63 21.5 100 34.1 130 44.4 Diarrhea during period 3.75 2.77 Muscle/bone pain 62 21.5 103 35.2 128 43.6 Joint pain 3.33 3.00 Headache 53 18.0 141 48.0 100 34.0 Leg pain 3.23 2.91 Anxious feelings 47 15.9 143 48.5 105 35.6 Rectal pain 3.18 2.96 Joint pain 41 13.9 97 33.0 156 53.1 Yeast infection 2.55 2.74 Leg pain 40 13.7 97 33.1 156 53.2 Spotting between/before periods 1.93 2.35 Spotting between periodsa31 11.9 49 18.9 180 69.2 Urinary infection 1.83 2.55 Rectal pain 32 11.0 95 32.8 163 56.2 Note. n ranges from 253 to 297 because of missing values. TSD range Urinary infection 31 10.5 64 21.8 199 67.7 is 0 to 9 and represents the sum of the symptom frequency, severity, Yeast infection 21 7.1 69 23.5 204 69.4 and interference. aExcludes nonmenstruating women. Note. n ranges from 253 to 297 because of missing values. bExcludes women who were celibate. aExcludes nonmenstruating women. bExcludes women who were celibate. Emotional Distress, Uncertainty, and Preference est TSD were fatigue or weariness, menstrual cramping, for and Adequacy of Information and nonperiod pelvic pain. Total mean symptom frequen- Table 3 shows mean scale scores for preference for cy and severity scores tended to be higher than scores information, perceived knowledge, emotional distress, measuring the total interference of symptoms with daily and uncertainty. Women in this sample reported infrequent emotional distress (as assessed by the frequency scale measuring anxiety, depression, perceived life quality, and social support). However, as shown in Table 1, 75.4% and 64.4% of women, respectively, reported expe- Women reported the greatest distress from riencing symptoms of depressed or anxious feelings some fatigue or weariness, menstrual cramping, and or most of the time. Highest levels of uncertainty were related to women’s perception of the changing course of nonperiod pelvic pain. their illness and the presence of “good and bad days” (M = 3.90, SD = 1.21), not knowing how bad the pain would be (M = 3.46, SD = 1.30), and unpredictable change in life. Total mean scores for symptom frequency, severity, symptoms (M = 3.38, SD = 1.34). Women were least and interference on the 0-3 scales were 1.58 (SD = 0.47), uncertain about lack of a specific diagnosis (M = 1.53, SD 1.35 (SD = 0.49), and 1.11 (SD = 0.53), respectively. = 1.08), inconsistent test results (M = 1.98, SD = 1.26),

January/February 2004 JOGNN 75 TABLE 3 TABLE 4 Mean Scale Scores on the Preference for Informa- Pearson Correlations on the Mishel Uncertainty in tion Scale (HOSI), Perceived Knowledge Question- Illness Scale–Community Form (MUIS-C), Feelings naire (PKQ), Feelings and Reactions Scale (FAR), and Reactions Scale (FAR), Education Attained; and the Mishel Uncertainty in Illness Perceived Knowledge Questionnaire (PKQ), and the Scale–Community Form (MUIS-C) Preference for Information Scale (HOSI) (n = 223)

Scale M ± SD Range Variable 1 2 3 4 5 Preference for information 43.95 ± 4.94 10-50 1. Uncertainty — .48** –.02 –.53***.06 Perceived knowledge 20.01 ± 4.38 6-30 2. Emotional distress — –.06 –.40** .03 Emotional distress 49.51 ± 19.08 0-120 3. Education attained — .02 .20** Perceived uncertainty 65.03 ± 15.90 23-115 4. Perceived knowledge — .15* 5. Preference for information — and complexity of treatment (M = 2.00, SD = 1.12). Over- Note. Listwise deletion was used to exclude subjects with missing data all, participants reported high preference for information on any of the variables.*p < 05. **p < .01. ***p < .001. about endometriosis. Women tended to agree with statements, such as “I usually ask the doctor many questions decrease the perception of the complexity of the disease. about procedures” and “I prefer to have as much infor- It is noteworthy that in this study, longer length of mem- mation as possible about endometriosis,” and to disagree bership in the Endometriosis Association was associated with statements, such as “I usually don’t ask many ques- with decreased uncertainty (r = –.28, p = < .001). tions about what is happening during an examination or Women’s indecision concerning the adequacy of their procedure.” Participants were undecided about whether knowledge about the disease may reflect the lack of infor- they had sufficient information about endometriosis, with mation available about endometriosis, which impairs mean scores for these items ranging from 3.06 (SD = 1.14) health care providers’ ability to adequately inform to 3.67 (SD = .91), just above the scale midpoint of 3. women.

Relationships Among Variables Limitations Women’s overall symptom distress was positively cor- This study had several limitations. Findings are limited related with uncertainty (r = .37, p = < .001). However, to describing the current sample at a fixed point in time women’s age (r = –18, p = < .01), and their length of mem- and therefore do not reflect the experiences of minority bership in the Endometriosis Association (r = –.28, p = < women, women from lower socioeconomic groups, .001), were negatively associated with uncertainty. Table women in treatment settings, or women’s responses to the 4 shows the correlations among women’s education, pref- illness over time. Furthermore, reported symptoms and erence for information, information adequacy, emotional symptom distress for the sample may not be representa- distress, and uncertainty scores. tive of other groups of women with the disease. Women in treatment settings might report more symptoms and Discussion greater symptom distress. Although participants in this study were sufficiently healthy to travel to the conference, Although pelvic pain, dysmenorrhea, dyspareunia, and they may have been more aware of disease-related symp- infertility are considered typical symptoms of endometrio- toms, given their interest in endometriosis. They therefore sis, women in this sample reported other multiple and may have been more likely to report them. Significant dif- varied symptoms. Results indicate that these symptoms ferences in uncertainty and desire for and perceived ade- often were frequent and severe but reportedly interfered quacy of information would be expected in samples not to a lesser degree with aspects of women’s daily lives. derived from self-help organizations and individuals Greater emotional distress was associated with attending educational programs. increased uncertainty. Although emotional distress was infrequent, its relationship to uncertainty is consistent Implications for Practice with previously reported studies. In the current sample, Uncertainty is accepted as a frequent, stressful compo- perceived uncertainty appeared to be more associated nent of the illness experience (Mast, 1995). However, with the unpredictability of the illness than its complexi- uncertainty should not be misconstrued as a negative psy- ty. This finding would be expected given participants’ chological outcome (McCormick, 2002). Women’s lack of high preference for information, which would tend to information about the disease in the current study was

76 JOGNN Volume 33, Number 1 associated with both uncertainty and emotional distress. others may have difficulty discussing the menstrual cycle This finding suggests the need to develop nursing actions with health care providers. Nurses can take an active role targeted to providing information and support. Teaching in educating women about reproduction and the normal patients about endometriosis and its treatment, providing menstrual cycle. written information, and/or sharing educational video- tapes or electronic resources may enhance women’s Future Research knowledge and reduce uncertainty and emotional distress More research on endometriosis and women’s respons- associated with endometriosis. Nurses should be aware of es to the disease are needed. A qualitative approach may individual differences and should assess women’s desire improve understanding of endometriosis, its symptoms, for information prior to providing patient education. and the impact of the illness and associated uncertainty Nurses also should be aware of and refer women to local on women’s lives. Research is needed to identify interven- and national resources on endometriosis. Health care tions to increase women’s knowledge and provide sup- providers and patients can obtain information on port, while recognizing individual needs and responses. endometriosis from the Endometriosis Association Outcome studies should focus on women’s physiological (www.EndometriosisAssociation.org), the American Soci- and emotional response to the illness, its medical and sur- ety for Reproductive Medicine (www.asrm.org), or the gical treatment, and to nursing intervention. Multisite, American College of Obstetricians and Gynecologists multidisciplinary, prospective studies would help clarify (www.acog.org). the influence of economic, social, cultural, and geograph- Women often have difficulty managing symptoms of ic factors and identify trends in care and treatment that chronic illness (O’Neill & Morrow, 2001). Nursing may affect outcomes for women with endometriosis.

Acknowledgments Nurses can help reduce women’s The author expresses her appreciation to Shirley Dam- rosch, Patricia Harris, and to the Endometriosis Associa- uncertainty by providing information tion and its members. and support. REFERENCES Anderson, V. N., & Walsh, J. E. (1998). Women with interstitial assessment and intervention should focus on assisting cystitis: Uncertainty and psychosocial adjustment. Journal women to manage the menstrual symptoms that are typi- of Gender, Culture, & Health, 3, 51-57. cally regarded as the hallmark of endometriosis. Howev- Beck, A. T. (1967). Depression: Causes and treatment. Philadel- er, women also need assistance in coping with the addi- phia: University of Pennsylvania Press. tional symptoms that women with endometriosis may Braden, C. J. (1990). A test of the self-help model: Learned response to chronic illness experience. Nursing Research, experience. Nurses can intervene by assisting women to 39, 42-47. identify effective means of pain control for menstrual, Braden, C. J. (1991). Patterns of change over time in learned nonperiod pelvic pain, and other types of pain. In addi- response to chronic illness among participants in a sys- tion, nurses can counsel patients on ways to minimize temic lupus erythematosus self-help course. Arthritis Care fatigue, the symptom found in this study to be associated and Research, 4, 158-167. with the greatest distress. For example, nurses can assist Brosens, I. (1997). Endometriosis—A disease because it is char- patients to set priorities, exercise regularly, and get ade- acterized by bleeding. American Journal of Obstetrics and quate sleep. Women in this study reported higher symp- Gynecology, 176, 263-267. tom frequency and severity than interference of symptoms Canadian Medical Association. (2001). The public health toll of with their daily lives. This finding suggests that women endometriosis. Canadian Medical Association Journal, continued to engage in their usual activities, despite fre- 164, 1201. Carroll, D. L., Hamilton, G. A., & McGovern, B. A. (1999). quent, severe symptoms. This behavior has implications Changes in health status and quality of life and the impact for women’s health and quality of life, as well as women’s of uncertainty in patients who survive life-threatening ability to manage their illness. arrhythmias. Heart & Lung: The Journal of Acute & In this study, menstrual cramping was associated with Critical Care, 28, 251-260. significant symptom distress. Menstrual cramps and Christian, A. (1993). The relationship between women’s symp- menstrual-related problems often have been described as toms of endometriosis and self-esteem. Journal of Obstet- “women’s lot in life.” Some women may, therefore, ric, Gynecologic, and Neonatal Nursing, 22, 370-376. believe they must live with menstrual problems, whereas Christman, N. J., McConnell, E. A., Pfeiffer, C., Webster, K. K., Schmitt, M., & Ries, J. (1988). Uncertainty, coping, and

January/February 2004 JOGNN 77 distress following myocardial infarction: Transition from Miller, J. D. (2000). Quantification of endometriosis-associated hospital to home. Research in Nursing and Health, 11, pain and quality of life during the stimulatory phase of 71-82. gonadotropin-releasing hormone agonist therapy: A Deane, K. A., & Degner, L. F. (1998). Information needs, uncer- double-blind, randomized, placebo-controlled trial. tainty, and anxiety in women who had a breast biopsy American Journal of Obstetrics and Gynecology, 182, with benign outcome. Cancer Nursing: An International 1483-1488. Journal for Cancer Care, 21, 117-126. Miller, J. F. (1992). Coping with chronic illness: Overcoming Dirksen, S. R. (2000). Predicting well-being among breast can- powerlessness (2nd ed.). Philadelphia: F. A. Davis. cer survivors. Journal of Advanced Nursing, 32, 937-943. Miller, S. M., Summerton, J., & Brody, D. S. (1988). Styles of Garry, R., Clayton, R., & Hawe, G. (2000). The effect of coping with threat: Implications for health. Journal of endometriosis and its radical laparoscopic excision on Personality and Social Psychology, 54, 142-148. quality of life indicators. British Journal of Obstetrics and Mishel, M. H. (1984). Perceived uncertainty and stress in illness. Gynaecology, 107, 44-54. Research in Nursing and Health, 7, 163-171. HCUPnet, Healthcare Cost and Utilization Project. (2000). Mishel, M. H. (1988). Uncertainty in illness. Image: Journal of Nationwide Inpatient Sample, 2000 [Data file]. Retrieved Nursing Scholarship, 20, 225-232. August 26, 2002 from http://www.ahrq.gov/data/hcup/ Mishel, M. H. (1990a). Manual: Uncertainty in Illness Scales. hcupnis.htm Chapel Hill: University of North Carolina. Hilton, B. A. (1988). The phenomenon of uncertainty in women Mishel, M. H. (1990b). Reconceptualization of the uncertainty with breast cancer. Issues in Mental Health Nursing, 9, in illness theory. Image: Journal of Nursing Scholarship, 217-238. 22, 256-262. Kjerulff, K. H., Erickson, B. A., & Langenberg, P. W. (1996). Mishel, M. H. (1997a). Manual: Uncertainty in Illness Scales. Chronic gynecological conditions reported by US women: Chapel Hill: University of North Carolina. Findings from the National Health Interview Survey, Mishel, M. H. (1997b). Uncertainty in chronic illness. In J. J. 1984-1992. American Journal of Public Health, 86, 195- Fitzpatrick (Ed.), Annual review of nursing research (pp. 199. 269-294). New York: Springer. Krantz, D. S., Baum, A., & Wideman, V. M. (1980). Assessment Mishel, M. H., & Braden, C. J. (1988). Finding meaning: of preferences for self-treatment and information in health Antecedents of uncertainty in illness. Nursing Research, care. Journal of Personality and Social Psychology, 39, 37, 98-103. 977-990. Mishel, M. H., Hostetter, T., King, B., & Graham, V. (1984). Lemaire, G. S. (1996). The relationship of illness, psychosocial, Predictors of psychosocial adjustment in patients newly and cognitive factors to perceived uncertainty among diagnosed with gynecological cancer. Cancer Nursing, 8, women with endometriosis (Doctoral dissertation, Uni- 291-299. versity of Maryland, Baltimore, 1996). Dissertation Mishel, M. H., Padilla, G., Grant, M., & Sorenson, D. (1991). Abstracts International, 57(4-B), 2480. Uncertainty in illness theory: A replication of the mediat- Lemaire, G. S., & Lenz, E. R. (1995). Perceived uncertainty ing effects of mastery and coping. Nursing Research, 40, about menopause in women attending an educational 236-240. program. International Journal of Nursing Studies, 32, Mishel, M. H., & Sorenson, D. (1991). Uncertainty in gynecol- 39-48. ogical cancer: A test of the mediating functions of mastery Lepine, L. A., Hillis, S. D., Marchbanks, P. A., Koonin, L. M., and coping. Nursing Research, 40, 167-171. Morrow, B. M., Kieke, B. A., et al. (1997). Hysterectomy O’Neill, E. W., & Morrow, L. L. (2001). The symptom experi- surveillance—United States, 1980-1993. Morbidity & ence of women with chronic illness. Journal of Advanced Mortality Weekly Report, CDC Surveillance Summary, Nursing, 33, 257-268. 46, 1-15. National Institutes of Health. (1995, May). Endometriosis Loveys, B. J., & Klaich, K. (1991). Breast cancer: Demands of 2000: Consensus conference. Bethesda, MD: Author. illness. Oncology Nursing Forum, 18, 75-80. Rannestad, T., Eikeland, O. J., Helland, H., & Qvarnstrom, U. MacDonald, S. R., Klock, S. C., & Milad, M. (1999). Long- (2000). Quality of life, pain, and psychological well-being term outcome of nonconservative surgery (hysterectomy) in women suffering from gynecological disorders. Journal for endometriosis-associated pain in women <30 years of Women’s Health & Gender-Based Medicine, 9, 897- old. American Journal of Obstetrics and Gynecology, 903. 180, 1360-1363. Redwine, D. B. (1994). Endometriosis persisting after castra- Mast, M. E. (1995). Adult uncertainty in illness: A critical tion: Clinical characteristics and results of surgical man- review of research. Scholarly Inquiry for Nursing Prac- agement. Obstetrics & Gynecology, 83, 405-412. tice: An International Journal, 9, 3-29. Reiter, R. C. (1998). Evidence-based management of chronic Mathias, S. D., Kupperman, M., Liberman, R., Lipschutz, R. C., pelvic pain. Clinical Obstetrics and Gynecology, 41, 422- & Steege, J. F. (1996). Chronic pelvic pain: Prevalence, 435. health-related quality of life and economic correlates. Rock, J. A., & Markham, S. M. (1992). Pathogenesis of Obstetrics & Gynecology, 87, 321-327. endometriosis. Lancet, 340, 1264-1267. McCormick, K. M. (2002). A concept analysis of uncertainty in Spielberger, C. D., Gorsuch, R. L., Lushene, R., Vagg, P. R., & illness. Journal of Nursing Scholarship, 34, 127-131. Jacobs, G. A. (1983). Manual for the State-Trait Anxiety Inventory. Palo Alto, CA: Consulting Psychologists Press.

78 JOGNN Volume 33, Number 1 Strauss, A. L., Corbin, J., Fagerhaugh, S., Glaser, B. G., Maines, Zhao, S. Z., Kellerman, L. A., Francisco, C. A., & Wong, J. M. D., Suczek, B., et al. (1984). Chronic illness and the qual- (1999). Impact of nafarelin and leuprolide for ity of life (2nd ed.). St. Louis: C. V. Mosby. endometriosis on quality of life and subjective clinical Waller, K. G., & Shaw, R. W. (1995). Endometriosis, pelvic pain, measures. Journal of Reproductive Medicine, 44, 1000- and psychological functioning. Fertility and Sterility, 63, 1006. 796-800. Warrington, K., & Gottlieb, L. (1987). Uncertainty and anxiety of hysterectomy patients during hospitalization. Nursing Gail Schoen Lemaire, PhD, APRN, BC, is an assistant profes- Papers/Perspective in Nursing, 19, 59-73. sor, University of Maryland School of Nursing, Baltimore. Weinstein, K. (1988). The emotional aspects of endometriosis: What the patient expects from her doctor. Clinical Obstet- rics and Gynecology, 31, 866-873. Address for correspondence: Gail Schoen Lemaire, PhD, APRN, Winkel, C. A., & Scialli, A. R. (2001). Medical and surgical BC, University of Maryland School of Nursing, Department of therapies for pain associated with endometriosis. Journal Behavioral and Community Health, 655 W. Lombard Street, of Women’s Health & Gender-Based Medicine, 10, 137- 6th Floor, Baltimore, MD 21201. E-mail: [email protected] 162. land.edu.

January/February 2004 JOGNN 79 CLINICAL RESEARCH

Giving Birth: The Voices of Orthodox Jewish Women Living in Canada Sonia E. Semenic, Lynn Clark Callister, and Perle Feldman

Objective: To describe the meaning of the child- Giving birth is a pivotal and life-changing event. birth experience to Orthodox Jewish women living in A woman’s perception of her childbirth experience is Canada. influenced by culture (Spector, 2000), and religious Design: In this phenomenologic study, audio- faith or spiritual belief lends perspective to the taped interviews were conducted. Tapes were tran- meaning of significant life experiences. The meaning scribed verbatim and analyzed for emergent themes. of life itself is connected with the symbolic traditions Demographic data also were collected. expressed within cultural/religious heritage (Balin, Setting and Participants: Thirty Orthodox Jew- 1988). Although much descriptive literature exists ish women who had given birth to healthy full-term on culturally defined behaviors and practices during newborns at a university-affiliated Jewish hospital in childbirth, research is limited on the cultural/spiritual Montreal, Canada, participated in the study. Data meanings of giving birth (Bergum, 1989; Green, were collected within 2 weeks after childbirth, either in Coupland, & Kitzinger, 1998). the mother’s postpartum hospital room or in her home. The purpose of this phenomenologic study was to Results: The following themes reflecting spiritual/ investigate the cultural/spiritual meaning of the cultural dimensions of the childbirth experience were childbirth experience of Orthodox Jewish women identified: (a) birth as a significant life event, (b) birth living in Canada. It is part of a series of studies on as a bittersweet paradox, (c) the spiritual dimensions the meaning of birth among childbearing women of of giving birth, (d) the importance of obedience to different religious and cultural backgrounds. These rabbinical law, and (e) a sense of support and affir- studies have identified similarities and differences in mation. the cultural meanings of giving birth. Commonali- Conclusion: This study documents cultural, reli- ties have been observed among religiously devout gious, and spiritual dimensions of the childbirth expe- women who are members of The Church of Jesus rience of Orthodox Jewish women living in Canada. Christ of Latter-day Saints (Mormon) living in the Knowledge and appreciation of the multiple dimen- United States, Catholic Mayan women living in sions of childbirth reflected by this study’s findings can Guatemala, and Muslim women living in Jordan contribute to holistic and culturally competent nursing (Callister, 1992, 1995; Callister, Lauri, & Vehvi- care of women and newborns. JOGNN, 33, 80-87; lainen-Julkunen, 2001; Callister, Semenic, & Foster, 2004. DOI: 10.1177/0884217503258352 1999; Callister & Vega, 1998; Callister, Vehvilainen- Keywords: Cultural competence—Culture and Julkunen, & Lauri, 1996, 2000; Kartchner & Cal- childbirth—Holistic nursing—Meaning of childbirth— Orthodox Jewish—Spirituality Note. Throughout this article, the Orthodox Jewish custom of not writing out the name of the Deity will be Accepted: February 2003 followed. In Hebrew, the name of the Deity is written without vowels and is, therefore, unpronounceable.

80 JOGNN Volume 33, Number 1 lister, 2003; Khalaf & Callister, 1997). The women in sexual intercourse, is confined within the bounds of mar- these studies describe religious injunctions related to riage. The law of family purity or Tahirat Hamishpacha childbearing, as well as a sense of the spiritual dimensions forbids physical contact between a husband and wife of the birthing experience. when the woman is bleeding vaginally (the period of Nid- dah) and decrees immersion in a ritual bath (mikvah) 7 Orthodox Jewish Traditions days following the cessation of any blood flow, such as menses or postpartum lochia. This restoration of purity is Many authors have described the customs of child- considered essential prior to resuming any physical con- bearing Orthodox Jewish women and their families in tact between spouses, including sexual intercourse. The relationship to the basic Torah laws originating in the law of modesty or tzniut dictates that Orthodox Jewish writings of the Old Testament and those of the Talmud, women wear clothing that covers the knees and elbows or rabbinical code (Beck & Goldberg, 1996; Charnes & and that married women keep their hair covered by a wig, Moore, 1992; Chertok, 1999; De Sevo, 1997; Feldman, scarf, or hat. Modesty laws also prohibit the Orthodox 1992; Kaufman, 1991; Kushner, 1993; Lassister, 1995; Jewish husband from directly observing his wife’s naked Lewis, 2003; Schwartz, 1995; Selekman, 1998; Spero, body at any time. 1996; Umansky, 1992; Waterhouse, 1994; Zilbertshotain, Another important mitzvah in Judaism is the keeping 1991). Orthodox Jewish families follow halakhah of the Sabbath, which is observed from sundown on Fri- (Orthodox Jewish law), a framework for life that empha- day night until sundown on Saturday night. The Sabbath sizes the maintenance of physical, emotional, and spiritu- laws are also observed on some Jewish holy days. Obser- al health. According to Gold (1998, p. 19), “Judaism is vance of the Sabbath law includes restriction from cre- essentially a religion of commandments,” as the Talmud ative work and activities, such as using electricity or the includes 613 commandments which govern behavior telephone, cooking, tearing paper, traveling by car, writ- from morning to night, birth until death. The performing, and handling money. Orthodox Jewish women tradi- ance of a good deed or mitzvah, such as becoming edu- tionally light Sabbath candles at sundown on Friday cated or helping others, increases the sum of goodness in evening. This is one of the three mitzvot that are specifi- the universe and works with G-d on the ongoing process cally given to women to maintain and as such is highly of creation, or Tikkun Olam. One seeks to express humil- valued. However, all Jewish laws, including the Sabbath ity in relationship to the greatness of G-d (Kushner, laws, may be suspended in potentially life-threatening cir- 1993). Although Orthodox Jews adhere strictly to the cumstances (Pikuach Nefesh), and a birthing woman is laws of the Talmud, specific observances differ between considered to be one whose life is in danger from the very sects of Ashkenazic Jews (those of eastern European ori- beginning of labor until 3 days after giving birth (Feld- gin) and Sephardic Jews (those of Mediterranean man, 1992). descent). Extent of religious observance also is highly Particularly significant rites accompany the birth of a variable among Jews of differing degrees of orthodoxy son to Orthodox Jewish families. If the firstborn child is and assimilation. a son, a pidyon haben celebration may be held. To cele- Procreation is one of the most important mitzvahs brate the birth of a son, a welcoming ceremony or sholom (mitzvot) given to Jewish people, with a minimum obliga- zachor is held on the first Friday night after the birth. Cir- tion to have at least one son and one daughter (Gold, cumcision or brit milah symbolizes the Abrahamic 1998; Hyman, 1989). The belief is that having many chil- covenant and is performed on the 8th day of life by a dren fulfills G-d’s decree more abundantly to “be fruitful and multiply,” the first of His commandments to His people (Genesis 1:28, The Jewish Bible, Jewish Publication Society, 1985). According to Orthodox Jewish tradition, he meaning of the childbirth experience to “Life is the most precious of G-d’s gifts” (De Sevo, 1997, T p. 48). The significance of this gift is explicated in The traditional Orthodox Jewish women living in Jewish Bible (Deuteronomy 33:19, 1985), “I call Heaven Canada has not been studied. and Earth to witness against you this day, that I have set before thee life and death . . . therefore choose life, that thou mayest live.” Children are considered a priceless treasure (Amsel, 1994). Elective abortion is seldom acceptable, except in the case of serious maternal health specifically trained Jewish mohel. The religious ordinance concerns or lethal fetal anomalies (Dorff, 1998). of brit milah is considered a joyful event, which accord- For the traditional Jewish woman, obedience to Rab- ing to Spero (1996, p. 135), “transforms the ‘cold’ surgi- binical law is closely linked to the marital covenant, as cal circumcision into a meaningful religious experience.” well as to the meaning of childbirth. Intimacy, including It is at the time of the brit milah that the name of the son

January/February 2004 JOGNN 81 is disclosed. Religious rites also accompany the birth of a belonged to any particular Orthodox Jewish sect and daughter, who is named in the synagogue by her father whether they followed traditional rules, such as Sabbath either on the first Sabbath after she is born or on another observance and “family purity” laws. Interested mothers day when the Torah is read in the synagogue. It is a tra- who espoused Orthodox Judaism were invited to partici- dition to not reveal the newborn’s name until he or she pate in the study, signed a consent form confirming their has been officially named in the synagogue. acceptance to be interviewed about their current child- Despite the central role of giving birth and raising chil- birth experience, and completed a demographic data sheet. dren in the Orthodox Jewish culture, no studies have been Participant-oriented, open-ended interviews using a found describing the meaning of the childbirth experience childbirth experience interview guide developed by to traditional Orthodox Jewish women. Nichols (1996; Nichols & Humenick, 2000) were conducted by the principal investigator either in the mother’s Method postpartum hospital room or in the participant’s home within 2 weeks of giving birth. The Childbirth Experience Questionnaire is a semistructured interview that has been Study Design and Sample used in more than 10 studies of childbearing families. In This study was conducted using a phenomenologic addition to the questions on the interview guide, more in- approach. Phenomenology describes the subjective mean- depth questions were asked to explicate rich descriptive ing of the lived experience and is particularly appropriate data. Each participant was interviewed once. All inter- in seeking a rich description of significant life events, such views were audiotaped and lasted 60-90 minutes. After as childbirth, in the voices of the women themselves (Ben- the interview, all participants completed the Utah Test for ner, 1994; Robertson-Malt, 1999). Descriptions of the the Childbearing Year (Sullivan & Foster, 1989), which mothers’ experiences in the present study were obtained assesses women’s beliefs about and perceptions of child- through in-depth interviews. Study participants were 30 bearing. Those findings will be reported separately. Orthodox Jewish mothers living in Montreal, Canada, who had experienced an uncomplicated vaginal birth of a Data Analysis healthy full-term newborn. All participants were literate, The audiotaped interviews were transcribed verbatim, and content analyses of the data, including the generation of themes, was performed using van Manen’s method (Creswell, 1998; van Manen, 1990). Data were analyzed Cultural and spiritual dimensions of childbirth concurrently with data collection, and trustworthiness of voiced by Orthodox Jewish women include the the data was established by saturation of categories as data were gathered. Findings were verified with a portion perception of birth as a bittersweet paradox, the of the study participants (“member checks”) to ensure importance of obedience to rabbinical law, and credibility and fitness of the emerging themes, validating the researcher’s conclusions (Sandelowski, 2000). a sense of social support and affirmation. Descriptive statistics were used to analyze the demographic data.

Findings middle-class, married White women who followed the beliefs and practices of Orthodox Judaism. Characteristics of the Participants Procedure The study sample was composed of 15 primiparous The study was conducted following approval from the and 15 multiparous Orthodox Jewish women who came institutional review board. Potential participants were from a variety of Modern Orthodox, Hasidic, and Ortho- recruited from the postpartum unit of a large university dox Sephardic communities. The mean age of the partici- teaching hospital serving Montreal’s Jewish community pants was 25 years, with a range of 18 to 40 years. Mater- by the principal investigator (the unit’s clinical nurse spe- nal parity ranged from 1 to 12, with a mean of 3 births. cialist at the time). Women who were identified as Ortho- Mean educational level was 14 years, ranging from 10-18 dox Jewish from their charts and/or who wore tradition- years of schooling. Forty-three percent of the women al Orthodox Jewish dress (e.g., wigs or headscarves and reported having no formal childbirth education during long-sleeved dresses) were approached to participate in a their most recent pregnancy. Nearly 30% of the Ortho- study on the birth experience of Orthodox Jewish dox women had no personal support person with them women. The mothers were asked to identify whether they during labor or birth. Whereas 73% of husbands were

82 JOGNN Volume 33, Number 1 present during labor, only 37% of the husbands remained ence, awe, purpose in the creation of a new life, and the in the room during the actual birth. However, 24% of the meaning of birth as an integral part of the spiritual participants had their sister or mother accompanying dimension of their lives. One study participant articulat- them during their labor and birth. Nearly half (47%) of ed her sense of the central role of motherhood in the Jew- the participants had a natural, unmedicated childbirth. ish religion:

Emergent Themes The whole idea is a miracle. I felt a very strong fulfillment in myself because G-d created you as a woman to During the interviews, the participants often wove the have a baby. You get something you can’t get anywhere stories of their current as well as previous pregnancies and else in the world. You get a human being, a life. It’s the births together, recounting each experience and attribut- most incredible thing in the world. ing meaning to each, as has been noted by other investigators (Davies & Dodd, 2002). The following themes From the perspective of these women living within the reflecting spiritual/cultural dimensions of the childbirth framework of rabbinical law, “Practices become symbol- experience of the Orthodox Jewish participants were ic and move beyond the ordinary to the holy” (Beck & identified during the interviews: (a) birth as a significant Goldberg, 1996, p. 167). One participant emphasized the life event, (b) birth as a bittersweet paradox, (c) the spiri- spiritual dimensions of the lives of Orthodox Jewish tual dimensions of giving birth, (d) the importance of obe- women: dience to rabbinical law, and (e) a sense of support and We take spirituality and we infuse it into every aspect affirmation. of our daily lives: From morning till night, from the Significance of the Birth Experience. The participants day you’re born to the grave. Everything you do is in this study valued childbearing and childrearing and intertwined and infused with spirituality. viewed giving birth as a significant life event, as expressed Observance of Rabbinical Law. Meaning was created by this mother, as women obeyed rabbinical law by bearing a child. As When they laid her in my arms, it was overwhelming. expressed by one mother, Suddenly this new child is yours, and you love it so This is our life. This is the first commandment in the much. [Being a mother means] sacrifice, dedication, Torah that we follow, that you should have children, and devotion, but mostly a sense of overwhelming love that you should multiply. First in my life is my family, for your child. my way of life, my fulfillment. Giving birth was an emotionally moving experience, Obedience to the laws of family purity and modesty and details of the birth experience were recalled with clar- were described by another participant as foundational to ity as reflected in the following: family life: Once he came out, I felt exhilarated. I couldn’t believe In Jewish marriages you have a balance. We have a that the baby came, that the pain would be over. I was period where we express our love physically, when crying and laughing at the same time from happiness. I there’s kissing and hugging and intimate relationships. had this flood of emotions. I didn’t believe that it was But half the time we don’t have that kind of relation- my son. ship with our husband, so we have to express it Birth as a Bittersweet Paradox. Women described birth through caring and concern, kindness, talking. The in paradoxical terms, focusing on giving birth as “a sacri- marriages are very solid because there is always the fice,” “obedience to the law,” “an achievement,” “a bless- constant balance. There are no extremes. ing,” “life itself,” “fulfillment,” “painful but joyous,” The participants also spoke of the importance of and “spiritual.” One woman said, “I felt every emotion observing the Sabbath and other religious holidays, such you can go through. I cried and laughed. Everything. I as Passover and Yom Kippur, which sometimes occurred was full of every emotion I could experience.” In further while the new mother was hospitalized, and of keeping describing this paradox, a first-time mother said, “It’s ancient rituals of naming and circumcision. Because nam- painful, but you can do it. When you have your little baby ing ceremonies for the child occurred after the mother was it’s worth it. Maybe for a few hours you think the world discharged from the hospital, participants did not complete is going to end and then it’s all over with.” the birth certificate during the early postpartum period. Spiritual Dimensions of Giving Birth. Spirituality is Sense of Support and Affirmation. The women associated with personal life principles, connectedness, expressed a strong sense of support from their husbands, becoming, and life experiences considered transcendent in despite the fact that the Orthodox Jewish men had no nature (O’Brien, 1999; Oldnall, 1996). When speaking of direct physical contact with their wives during labor and their childbirth experiences, these women spoke of rever-

January/February 2004 JOGNN 83 childbirth. Respect of the law of modesty and observance other cultural groups is beyond the scope of this article. of the niddah period (which begins anytime from the pres- Similar themes, however, have been found in other groups ence of bloody show to complete cervical dilation, of religiously motivated childbearing women, such as depending on the Orthodox Jewish sect) prohibited the those espousing the faith of The Church of Jesus Christ of Orthodox Jewish husbands from touching their wives Latter-day Saints (Mormon) (Callister, 1992) and women during labor and from viewing the actual birth. Husbands of the Islamic faith (Khalaf & Callister, 1997). who remained present during childbirth stood at the head The women who participated in these interviews were of the birthing bed or behind a curtain in the room. Emo- provided with an occasion for positive self-appraisal, as tional support provided by the husbands included praying they articulated the significance of their childbearing and reading Psalms. Scripture reading was found by the experiences within the context of their traditional lives. participants to be comforting and affirming, as expressed Despite the investigators’ concern that women would be by one mother: dealing with physical recovery and new motherhood during the early postpartum weeks and thus would be reluc- Psalms is a book, a very powerful spiritual medium that tant to participate in the study, these Orthodox Jewish we use when we are happy, when we are asking G-d for mothers were grateful to articulate their feelings to anoth- help, to intervene when someone is ill. It’s very potent. er woman who was interested in both their birth experi- When I went into labor I used to say Psalms to myself ences and their spiritual life. Participants described deeply as long as I possibly could and then when I couldn’t, I felt emotions about their birth experiences, and many of knew that my husband was continuing the Psalms. the mothers cried, particularly when describing how they The women relied on female caregivers for physical felt at the actual moment of birth. In addition, several of and additional emotional support during labor and child- the participants expressed pride in the opportunity to birth. Many participants spoke of the value of the caring educate professional nurses about Orthodox Jewish presence of female family members or close friends during beliefs, practices, and family life. labor and birth or of the female delivery room nursing staff. Participants also valued experiential knowledge Limitations gained from female family members and friends as an Data from Orthodox Jewish women living in Montre- important part of their preparation for childbirth, al may not be representative of those from elsewhere in because culturally specific formal childbirth education Canada or other countries. Montreal has a large, varied, offerings are not readily available within the Orthodox and active Orthodox Jewish community, and the women Jewish community. Continued learning is one of the most in this study gave birth in a culturally supportive envi- respected values of Jewish women, one generation teach- ronment that may have facilitated their ability to articu- ing and supporting the next. Knowledge gained from late the cultural and spiritual dimensions of their birth other women was considered more credible than books experiences. In addition, all data were collected by the about pregnancy and childbirth. One participant said, My mother gave me encouragement the whole time. She was there with me the whole time just giving me ulturally competent nursing care can reassurance. Every time during a contraction my mom C would tell me, “Come on, come on, you can do it.” increase maternal self-actualization, Just those words. It was so encouraging. facilitate adaptation to motherhood, and strengthen family relationships. Discussion This study used a phenomenologic approach to explore the meaning of the childbirth experience to Orthodox Jewish childbearing women. According to Miller (1995, principal investigator. Data analysis, however, was per- p. 260), “Childbearing and mothering, with their com- formed concurrently with data collection and in collabo- plex relationships to another person, their ever-changing ration with a co-investigator with extensive experience in roles, and their deep concern, may be ideal contexts with- qualitative research methods. Interpretations of the find- in which to enrich the spiritual self.” These descriptive ings were further validated by a second co-investigator, a data affirm that the participants found giving birth to be Jewish family physician with a large Orthodox Jewish enriched by and to enrich their religious Jewish faith. An obstetric practice, who has an interest in the interaction in-depth discussion of how the themes identified in this between medicine and Jewish law. study compare with the birth experience of women from

84 JOGNN Volume 33, Number 1 extent of traditional Jewish practices associated with TABLE 1 childbirth is important to assess, such as the observance Supportive Care for Childbearing Orthodox of Sabbath laws and dietary needs associated with kosher Jewish Women food observance. Knowledge of specific cultural practices, such as those listed in Table 1, may facilitate the provision • Appreciate the central role of motherhood to the Orthodox Jewish woman. According to Gold (1998, p. of holistic, family-centered care to Orthodox Jewish 25), “Every Jewish birth is a commitment to the Jewish childbearing women. It must be recognized, however, that future.” marked variations in adherence to traditional practices • Anticipate that if a woman requires a cesarean birth or may be observed both across and within different sects of other unexpected intervention during labor or delivery, Orthodox Jews. As Locsin (2000, p. 4) has suggested, the husband may consult with their rabbi (spiritual “differences create and affirm our uniqueness and same- leader) prior to his wife giving consent. ness” as we celebrate the richness of cultural diversity. • Support the husband’s role during labor and birth, not The importance of listening to women’s birth stories judging his actions as unhelpful or indifferent. The Orthodox Jewish husband is not allowed physical contact was reaffirmed in this study. The integration of the child- with his wife from the beginning of labor until after com- birth experience into the framework of a woman’s life has plete cessation of the lochia. the potential to promote self-actualization, strengthen her • Understand that during hospitalization, Orthodox Jewish relationships with those who are most significant to her, women may request a head cover (such as a surgical cap), and facilitate successful adaptation to motherhood. Par- cover up with extra gowns or blankets, and/or keep their ticipating in this research offered mothers an opportunity curtains drawn to preserve modesty. for an interview, which may be considered not only a • Be flexible regarding visitors, especially of female friends nursing assessment tool but also an intervention. Such lis- or relatives. Visits from extended family to share in the joy of the birth are considered a mitzvah, or good deed. tening by an interested, caring nurse enables childbearing • Assist with Sabbath observance (e.g., raising/lowering women to articulate their feelings and make meaning out head of bed, turning on/off lights, operating a breast of a significant and life-changing event. A British service, pump, answering the mother’s telephone, providing elec- Birth Afterthoughts, which provides women with the tric candles if requested). Consent forms or other docu- opportunity to talk to a nurse-midwife about their birth ments may not be signed until the Sabbath is over. Some experiences, was noted by childbearing women to be mothers may ask the nursing staff to diaper and/or bathe their newborns during the Sabbath, because energy is helpful, as they were given “voice” in an interchange expended during these activities. characterized by shared understanding and empathy • Understand that the mother may want to put an amulet or (Charles & Curtis, 1994). More recently, the Maternity prayer card in the bassinet during hospitalization to help Center Association, New York City, completed the Lis- keep her newborn safe from harm. tening to Mothers survey to better understand how to • Ensure the availability of soy-based formula for mothers improve women’s childbearing experiences by listening to who wish to supplement their newborns, because most the voices of women (Maternity Center Association, 2002). commercial cow milk–based formula is not considered kosher. Future Research • Recognize that a newborn boy will be circumcised in an According to Sawyer et al. (1995, p. 557), “The pro- important religious ceremony on the 8th day of life and that any event that may interfere with this (e.g., infant duction of culturally unbiased nursing knowledge is one hyperbilirubinemia requiring readmission) may cause of the most significant research issues of this and the next anxiety for the family. decade.” The current study adds to this body of knowl- • Understand that the Orthodox Jewish family may be edge by providing additional insight on the cultural/spiri- reluctant to reveal their newborn’s intended name and tual meanings of childbirth, documenting how the cultur- that completion of the birth certificate may be delayed al and societal context within which women live defines until after the naming ceremony. their health care needs. Recommendations for future research include extending this work to Orthodox Jewish women living in other countries, such as the United States Implications for Nursing or Israel, as well as to Jewish women who self-identify as There is impetus for nurses and other health care pro- non-Orthodox (e.g., Conservative or Reform) Jews. fessionals to provide culturally competent, skilled, Childbirth narratives from women representing other dis- responsive care that reflects respect for the sociocultural tinct cultural/religious groups will contribute to an context of women’s lives (Callister, 2001). Nurses practic- enhanced understanding of how perinatal and women’s ing throughout Canada and the United States are likely to health nurses can optimize their care and support for all care for Orthodox Jewish women and their families. The families across the childbearing continuum.

January/February 2004 JOGNN 85 Acknowledgment Davies, D., & Dodd, J. (2002). Qualitative research and the question of rigor. Qualitative Health Research, 12(2), This research was funded by Brigham Young Universi- 279-289. ty College of Nursing, Sigma Theta Tau, Iota Iota Chap- De Sevo, M. R. (1997, August). Keeping the faith: Jewish tradi- ter, Women’s Research Institute. tions in pregnancy and childbirth. AWHONN Lifelines, pp. 46-49. Dorff, E. N. (1998). Matters of life and death: A Jewish REFERENCES approach to modern medical ethics. Philadelphia: Jewish Amsel, N. (1994). The Jewish encyclopedia of moral and ethical Publication Society. issues. Northvale, NJ: Jason Aronson. Feldman, P. (1992). Sexuality, birth control and childbirth in Canadian Medical Associa- Balin, J. (1988). The sacred dimensions of pregnancy and birth. Orthodox Jewish tradition. tion Journal 146 Qualitative Sociology, 11, 275-301. , , 29-33. And Hannah wept: Infertility, adoption, and Beck, S. E., & Goldberg, E. K. (1996). Jewish beliefs, values, Gold, M. (1998). the Jewish couple and practices: Implications for culturally sensitive nursing . Philadelphia: Jewish Publication Soci- care. Advanced Practice Nursing Quarterly, 2(2), 15-22. ety. Great Benner, P. (1994). Interpretive phenomenology. Thousand Green, J. M., Coupland, V. A., & Kitzinger, J. V. (1998). expectations: A prospective study of women’s expecta- Oaks, CA: Sage. tions and experiences of childbirth Bergum, V. (1989). Woman to mother: A transformation. South . Cheshire, UK: Books Hadley, MA: Bergin and Garvey. for Midwives Press. Callister, L. C. (1992). The meaning of the childbirth experience Hyman, P. E. (1989). The modern Jewish family: Image and The Jewish family: Metaphor to the Mormon woman. Journal of Perinatal Education, reality. In D. Kraemer (Ed.), and memory 1, 28-32. . New York: Oxford University Press. Tanakh: The Holy Scriptures Callister, L. C. (1995). Cultural meanings of childbirth. Journal Jewish Publication Society. (1985). The Jewish Bible of Obstetric, Gynecologic, and Neonatal Nursing, 24, [ ]. Philadelphia: Author. Rachel’s daughters 327-332. Kaufman, D. (1991). . New Brunswick, NJ: Callister, L. C. (2001). Culturally competent care of women and Rutgers University. newborns: Attitudes, knowledge, and skills. Journal of Kartchner, R., & Callister, L. C. (2003). Giving birth: Voices of Journal of Holistic Nursing 21 Obstetric, Gynecologic, and Neonatal Nursing, 30, 209- Chinese women. , (2), 100- 215. 116. Callister, L. C., Lauri, S., & Vehvilainen-Julkunen, K. (2001). Khalaf, I., & Callister, L. C. (1997). Cultural meanings of child- Journal of Holis- Giving birth: Perceptions of Finnish childbearing women. birth: Muslim women living in Jordan. tic Nursing 15 MCN: American Journal of Maternal Child Nursing, , (4), 378-388. To life! A celebration of Jewish being and 26(1), 28-32. Kushner, H. S. (1993). thinking Callister, L. C., Semenic, S., & Foster, J. C. (1999). . New York: Warner Books. Multi-cultural clients: A professional Cultural/spiritual meanings of childbirth: Orthodox Jew- Lassister, S. M. (1995). handbook for healthcare providers and social workers ish and Mormon women. Journal of Holistic Nursing, . 17(3), 280-295. Westport, CT: Greenwood Press. Callister, L. C., & Vega, R. (1998). Giving birth: Guatemalan Lewis, J. A. (2003). A Jewish perspective. In M. L. Moore & Cultural competence in the care of women’s voices. Journal of Obstetric, Gynecologic, and M. K. Moos (Eds.), childbearing families Neonatal Nursing, 27, 289-295. (pp. 78-81). White Plains, NY: Callister, L. C., Vehvilainen-Julkunen, K., & Lauri, S. (1996). March of Dimes. Cultural perceptions of childbirth: A cross-cultural com- Locsin, R. C. (2000). Building bridges: Affirming culture in Holistic Nursing Practice 15 parison of childbearing women. Journal of Holistic Nurs- health and nursing. , (1), 1-4. Listening to mothers: ing, 14(1), 66-78. Maternity Center Association. (2002). Report of the First National United States Survey of Callister, L. C., Vehvilainen-Julkunen, K., & Lauri, S. (2000). A Women’s Childbearing Experiences description of birth in Finland. MCN: American Journal . New York: Materni- of Maternal Child Nursing, 25(3), 146-150. ty Center Association. Available: http://www.maternity- Charles, J., & Curtis, L. (1994). Birth afterthoughts: A listening wise.org/listeningtomothers and information service. British Journal of Midwifery, Miller, M. A. (1995). Culture, spirituality, and women’s health. Journal of Obstetric, Gynecologic, and Neonatal Nurs- 2(7), 331-334. ing 24 Charnes, L. S., & Moore, P. S. (1992). Meeting patients’ spiri- , , 257-263. tual needs: The Jewish perspective. Holistic Nursing Prac- Nichols, F. H. (1996). The meaning of the childbirth experience: Journal of Perinatal Education tice, 6, 64-72. Review of the literature. , 5 Chertok, I. (1999). Relief of breast engorgement for the Sab- (4), 71-77. Childbirth education: bath-observant Jewish woman. Journal of Obstetric, Nichols, F. H., & Humenick, S. (2000). Practice, research, and theory Gynecologic, and Neonatal Nursing, 28, 265-269. . Philadelphia: W. B. Saun- Creswell, J. W. (1998). Qualitative inquiry and research design. ders. Spirituality in nursing: Standing on holy Thousand Oaks, CA: Sage. O’Brien, M. E. (1999). ground. Boston: Jones and Bartlett.

86 JOGNN Volume 33, Number 1 Oldnall, A. (1996). A critical analysis of nursing: Meeting the van Manen, M. (1990). Researching lived experience: Human spiritual needs of patients. Journal of Advanced Nursing, science for an action sensitive pedagogy. London, 23, 138-144. Ontario: Althouse Press. Robertson-Malt, S. (1999). Listening to them and reading me. Waterhouse, C. (1994). Midwifery care for Orthodox Jewish Journal of Advanced Nursing, 29(2), 290-297. women. Modern Midwife, 4(9), 11-14. Sandelowski, M. (2000). Whatever happened to qualitative Zilbertshotain, Y.B.D.Y. (1991). Toras hayoledes: The laws per- description? Research in Nursing and Health, 23, 334- taining to childbirth. Beni Brak, Israel: Institute of 340. Halacha Medicine. Sawyer, L., Regev, H., Proctor, S., Nelson, M., Messias, D., Barnes, D., et al. (1995). Matching versus cultural competence in research. Research in Nursing and Health, 18, Sonia E. Semenic, RN, MSc(A), IBCLC, is a doctoral candidate 557-567. at the School of Nursing, McGill University, Montreal, Quebec, Schwartz, E. A. (1995). Jewish Americans. In J. N. Giger & Canada. R. E. Davidhizer (Eds.), Transcultural nursing: Assess- ment and intervention (pp. 525-552). St. Louis: Mosby. Selekman, J. (1998). Jewish-Americans. In L. D. Purnell & B. J. Lynn Clark Callister, RN, PhD, FAAN, is a professor of nursing Paulanka (Eds.), Transcultural health care (pp. 371-395). at the Brigham Young University College of Nursing, Provo, Philadelphia: F. A. Davis. Utah. Spector, R. E. (2000). Cultural diversity in health and illness. Upper Saddle River, NJ: Prentice Hall. Perle Feldman, MDCM, FCFP, is an assistant professor of Fam- Spero, D. (1996). Culturally relevant care: The Orthodox Jew- ily Medicine at McGill University, and a staff physician, Herzl ish client. In M. C. Julia (Ed.), Multicultural awareness in Family Practice Center, Sir Mortimer B. Davis Jewish General the health care professions (pp. 131-145). Boston: Allyn Hospital, Montreal, Quebec, Canada. and Bacon. Sullivan, J., & Foster, J. C. (1989). Stress and pregnancy. New Address for correspondence: Sonia Semenic, RN, MSc(A), York: AMS Press. IBCLC, School of Nursing, McGill University, 3506 University Umansky, E. M. (1992). Piety, persuasion and friendship: A his- Street, Montreal, Quebec H3A 2A7 Canada. E-mail: tory of Jewish women’s spirituality. In E. M. Umansky & [email protected]. D. Ashton (Eds.), Four centuries of Jewish women’s spirituality. Boston: Beacon Press.

January/February 2004 JOGNN 87 SPECIAL REPORTS

Resources for Evidence-Based Practice, January/February 2004 Carol Sakala

Published simultaneously in Journal of Midwifery Comment: Continuous labor support has no and Women’s Health (2004); 49(1). known downsides and can help women have a satis- fying childbirth experience and avoid risks associat- This column highlights new and recently updated ed with cesareans and other major interventions. systematic reviews and overviews of best research The organization of care in modern maternity units evidence that clarify knowledge about effects of spe- appears to limit the effectiveness of labor support cific practices in maternal/newborn and women’s provided by members of the hospital staff. It is a pri- health. ority to clarify whether this basic component of safe and effective maternity care also offers economic From Cochrane Database of Systematic advantages. Full text of the review is available without charge from http://www.maternitywise.org/ Reviews (CDSR), Issue 3, 2003 prof/laborsupport. Featured review: Hodnett, E. D., Gates, S., Hofmeyr, G. J., & Sakala, C. Continuous support New Systematic Reviews for women during childbirth. • Amniocentesis and chorionic villus sampling The Cochrane labor support review has been for prenatal diagnosis entirely reconstructed with the following new ele- • Deep versus shallow suction of endotracheal ments: reviewer team, title, protocol, large random- tubes in ventilated neonates and young infants ized controlled trials (RCTs), and subgroup analy- • Early intravenous nutrition for the prevention ses. It also includes expanded background and of neonatal jaundice discussion sections. The new review summarizes • G-CSF and GM-CSF for treating or preventing experiences of nearly 13,000 women who partici- neonatal infections pated in 15 RCTs. Women who received continuous • Gowning by attendants and visitors in new- labor support were less likely than women who did born nurseries for prevention of neonatal mor- not have continuous labor support to have regional bidity and mortality analgesia or any analgesia/anesthesia, give birth with • Male circumcision for prevention of heterosex- vacuum extraction or forceps, give birth by cesare- ual acquisition of HIV in men an, and report dissatisfaction or negatively rate their • Oestrogen supplementation, mainly diethyl- experience. A subgroup analysis examined the stilbestrol, for preventing miscarriages and impact of the type of person providing continuous other adverse pregnancy outcomes support. Effects were stronger when the person was • Oral immunoglobulin for the prevention of not a regular member of the hospital staff and was rotavirus infection in low birth weight infants an outsider present expressly to provide support. • Rectal analgesia for pain from perineal trauma Compared to women without continuous support, following childbirth those with support from nonhospital caregivers were • Regional (spinal, epidural, caudal) versus gen- 26% less likely to give birth by cesarean section, eral anaesthesia in preterm infants undergoing 41% less likely to have an instrumental birth, 28% inguinal herniorrhaphy in early infancy less likely to use any analgesia or anesthesia, and • Repeat doses of prenatal corticosteroids for 36% less likely to be dissatisfied with their child- women at risk of preterm birth for preventing birth experience. neonatal respiratory disease • Surgical versus medical treatment with

88 JOGNN Volume 33, Number 1 cyclooxygenase inhibitors for symptomatic patent compend-babyfriendlywho.htm) provides evidence-based ductus arteriosus in preterm infants recommendations for breastfeeding support during hospi- • Treatments for gestational diabetes and impaired talization for childbirth. BFHI and the review featured glucose tolerance in pregnancy here together provide guidance to help clinicians effec- • Vitamin E supplementation for prevention of mor- tively support breastfeeding throughout the childbearing bidity and mortality in preterm infants cycle. Optimal breastfeeding support in primary care may require services that go beyond routine prenatal and Updated Systematic Reviews postpartum maternity care visits. • Dopamine versus dobutamine for hypotensive preterm infants Recent Abstract Entries Assessing Quality • Growth hormone for in vitro fertilization of Systematic Reviews • Oral beta-blockers for mild to moderate hyperten- • Accuracy of outpatient endometrial biopsy in the sion during pregnancy diagnosis of endometrial cancer: a systematic quan- • Ovulation suppression for endometriosis titative review • Phenobarbital prior to preterm birth for preventing • Are fluid-based cytologies superior to the conven- neonatal periventricular haemorrhage tional Papanicolaou test: a systematic review • Planned cesarean section for term breech delivery • Diagnostic accuracy of large-core needle biopsy for • Support during pregnancy for women at increased nonpalpable breast disease: a meta-analysis risk of low birthweight babies • Efficacy of physical therapy methods and exercise • Treatment of infantile spasms after a breast cancer operation: a systematic review • Fetal bradycardia due to intrathecal opioids for Cochrane Reviews are available by subscription to The labour analgesia: a systematic review Cochrane Library or through various publishing partners. • Laparoscopic surgery is not inherently dangerous Abstracts of Cochrane Reviews are available without for patients presenting with benign gynaecologic charge. See http://www.cochrane.org/reviews/ for abstracts pathology: results of a meta-analysis and subscription details. • Luteal phase support in infertility treatment: a meta- analysis of the randomized trials From Database of Abstracts of Reviews of • Management of mild chronic hypertension during Effects (DARE) pregnancy: a review • Patient-controlled epidural analgesia versus contin- Featured review: Couto de Oliveira, M. I., Bastos uous infusion for labour analgesia: a meta-analysis Camacho, & L. A., Tedstone, A. E. Extending breast- • Psychological consequences of predictive genetic feeding duration through primary care: a systematic testing: a systematic review review of prenatal and postnatal interventions. [Abstract • Tolterodine versus oxybutynin in the treatment of 20025027] urge urinary incontinence: a meta-analysis This review of prenatal and/or postpartum interven- • US characterization of ovarian masses: a meta- tions was performed to determine effective ways to pro- analysis mote, protect, and support breastfeeding within primary care. The authors report results from 27 internally valid DARE abstracts are available without charge from randomized controlled trials and 10 internally valid http://nhscrd.york.ac.uk. quasi-random studies enrolling a total of 20,253 women. The most effective interventions tended to span the pre- Evidence-Based Reviews From Other Sources natal period or both prenatal and postpartum periods and to offer face-to-face information, guidance, and support. Featured review: (May 2003). Results of systematic The research supports intensive interventions that com- review of research on diagnosis and treatment of coro- bine group sessions, individual sessions, and/or home vis- nary heart disease in women; summary. Evidence its over time. It does not support breastfeeding promotion Report/Technology Assessment: Number 80. AHRQ Pub- with mixed messages (e.g., concurrent with providing lication Number 03-E034. Rockville, MD: Agency for infant formula) and brief nonintensive interventions Healthcare Research and Quality. Available without (including giving breastfeeding messages among other charge at: http://www.ahrq.gov/clinic/epcindex.htm# topics and through isolated printed materials). The gynecologic. DARE abstract authors give a high rating to the overall Although coronary heart disease (CHD) is the most quality of this review. common cause of death in women, most CHD research Comment: The WHO/UNICEF Baby-Friendly Hospi- reports do not provide useful data about its prevention tal Initiative (BFHI, see http://www.cdc.gov/breastfeeding/ diagnosis and treatment in women. The Agency for

January/February 2004 JOGNN 89 Healthcare Research and Quality commissioned this evi- AHRQ Publication No. 03-E036. Rockville, MD: dence overview to assess the best available research about Agency for Healthcare Research and Quality. Avail- women with a focus on 1) accurate noninvasive tests for able without charge and with full report at identifying CHD; 2) effective treatments for CHD; 3) risk http://www.ahrq.gov/clinic/epcindex.htm#cardiovascular. factors for CHD and effects of modifying these; 4) relative • Farquhar, C., Ekeroma, A., Furness, S., & Arroll, B. use of tests, risk factor modification, and treatments in (2003). A systematic review of transvaginal ultra- women and men; and 5) prognostic value of biochemical sonography, sonohysterography and hysteroscopy markers for diagnosing acute myocardial infarction or for the investigation of abnormal uterine bleeding in unstable angina. This comprehensive search for evidence premenopausal women. Acta Obstetricia et Gyne- focused on 42 specified subtopics and yielded just 162 cologica Scandinavica, 82(6), 493-504. useable articles. Most articles used less definitive observa- • Fraser. A. B., & Grimes, D. A. (2003). Effect of lac- tional designs (versus experimental designs or systematic tation on maternal body weight: A systematic reviews), and good-quality data were only available to review. Obstetrical and Gynecological Survey, address six of the subtopics. For specific details on the 58(4), 265-269. quality and results of currently available research, readers • Green, B. B., & Taplin, S. H. (2003). Breast cancer are referred to the summary and full report, available screening controversies. Journal of the American online. Board of Family Practice, 16(3), 233-241. Comment: .Although federal policies have succeeded in • Green, J., Berrington de Gonzalez, A., Smith, J. S., increasing the proportion of female participants in Franceschi, S., Appleby, P., Plummer, M., & Beral, research, few subgroup results or focused studies are V. (2003). Human papillomavirus infection and use available to guide practice for women relating to these of oral contraceptives. British Journal of Cancer, critical questions. 88(11), 1713-1720. • Harvey, M. A. (2003). Pelvic floor exercises during Recent Evidence-Based Reviews and after pregnancy: A systematic review of their • Bachmann, L. M., Coomarasamy, A., Honest, H., & role in preventing pelvic floor dysfunction. Journal Khan, K. S. (2003). Elective cervical cerclage for of Obstetrics and Gynaecology Canada, 25(6), 487- prevention of preterm birth: A systematic review. 498. Acta Obstetricia et Gynecologica Scandinavica, • Kroumpouzos, G., & Cohen, L. M. (2003). Specific 82(5), 398-404. dermatoses of pregnancy: An evidence-based sys- • Barnhart, K. T., Gosman, G., Ashby, R., & Sammel, tematic review. American Journal of Obstetrics and M. (2003). The medical management of ectopic Gynecology, 188(4), 1083-1092. pregnancy: A meta-analysis comparing “single • Malik, A., Hui, C. P., Pennie, R. A., & Kirpalani, H. dose” and “multidose” regimens. Obstetrics and (2003). Beyond the complete blood cell count and Gynecology, 101(4), 778-784. C-reactive protein: A systematic review of modern • Berkman, N. D., Thorp, J. M., Lohr, K. N., Carey, diagnostic tests for neonatal sepsis. Archives of T. S., Hartmann, K. E., Gavin, N. I., Hasselblad, V., Pediatrics and Adolescent Medicine, 157(6), 511- & Idicula, A. E. (2003). Tocolytic treatment for the 516. management of preterm labor: A review of the evi- • Merialdi, M., Carroli, G., Villar, J., Abalos, E., Gul- dence. American Journal of Obstetrics and Gyne- mezoglu, A. M., Kulier, R., & de Onis, M. (2003). cology, 188(6), 1648-1659. Nutritional interventions during pregnancy for the • Carfoot, S., Williamson, P. R., & Dickson, R. prevention or treatment of impaired fetal growth: (2003). A systematic review of randomised con- An overview of randomized controlled trials. Jour- trolled trials evaluating the effect of mother/baby nal of Nutrition, 133(5 Suppl 2), 1626s-1631s. skin-to-skin care on successful breast feeding. Mid- • Pritchard, M. A., Flenady, V., & Woodgate, P. wifery, 19(2), 148-155. (2003). Systematic review of the role of pre- • Coomarasamy, A., Honest, H., Papaioannou, S., oxygenation for tracheal suctioning in ventilated Gee, H., & Khan, K. S. (2003). Aspirin for preven- newborn infants. Journal of Paediatrics and Child tion of preeclampsia in women with historical risk Health, 39(3), 163-165. factors: A systematic review. Obstetrics and Gyne- • Ray, J. G., & Blom, H. J. (2003). Vitamin B12 insuf- cology, 101(6), 1319-1332. ficiency and the risk of fetal neural tube defects. • (May 2003). Diagnosis and treatment of coronary Quality Journal of Medicine, 96(4), 289-295. heart disease in women: Systematic reviews of evi- • Rietman, J. S., Dijkstra. P. U., Hoekstra, H. J., dence on selected topics; summary. Evidence Eisma, W. H., Szabo, B. G., Groothoff, J. W., & Report/Technology Assessment: Number 81. Geertzen, J. H. (2003). Late morbidity after treat-

90 JOGNN Volume 33, Number 1 ment of breast cancer in relation to daily activities their knowledge and increase their participation in deci- and quality of life: A systematic review. European sion making? Does editorial peer review improve the Journal of Surgical Oncology, 29(3), 229-238. quality of reports of biomedical studies? A growing num- • Sanchez-Ramos, L., Olivier, F., Delke, I., & Kaunitz, ber of systematic reviews are available to help clarify A. M. (2003). Labor induction versus expectant results of the best available research about these and other management for postterm pregnancies: A systemat- questions relating to effective professional practice and ic review with meta-analysis. Obstetrics and Gyne- health services delivery. cology, 101(6):1312-1318. Within the Cochrane Collaboration, three review • Smith, J. S., Green, J., Berrington de Gonzalez, A., groups prepare and maintain systematic reviews in this Appleby, P., Peto, J., Plummer, M., Franceschi, S., & broad area. The Effective Practice and Organization of Beral, V. (2003). Cervical cancer and use of hor- Care Group evaluates continuing education, regulatory, monal contraceptives: A systematic review. The organizational, quality assurance, and other interventions Lancet, 361, 1159-1167. to improve service delivery. The Consumers and Commu- • Van Kessel, K., Assefi, N., Marrazzo, J., & Eckert, nication Group evaluates interventions that affect con- L.. (2003). Common complementary and alternative sumers’ interactions with health professionals, services, therapies for yeast vaginitis and bacterial vaginosis: and researchers; and the Methodology Review Group A systematic review. Obstetrical and Gynecological evaluates aspects of carrying out research and disseminat- Survey, 58(5), 351-358. ing research results. Issue 4, 2003 of The Cochrane • Villar, J., Merialdi, M., Gulmezoglu, A. M., Abalos, Library includes 48 completed systematic reviews from E., Carroli, G., Kulier, R., & de Onis, M. (2003). these groups and 42 protocols of additional reviews in Nutritional interventions during pregnancy for the preparation. The Cochrane Collaboration Web site prevention or treatment of maternal morbidity and (http://www.cochrane.org/) contains abstracts of complet- preterm delivery: An overview of randomized con- ed reviews and titles of reviews under development from trolled trials. Journal of Nutrition, 133(5 Suppl 2), these groups, along with links to their Web sites and PDF 1606s-1625s. files of their newsletters. These resources can help policy • Yabroff, K. R., Mangan, P., & Mandelblatt, J. makers, administrators, educators, researchers, and clini- (2003). Effectiveness of interventions to increase cians improve practice. Papanicolaou smear use. Journal of the American Board of Family Practice, 16(3), 188-203. Carol Sakala, PhD, MSPH, is Director of Programs at the Commentary: Resources to Guide Effective Maternity Center Association (MCA). MCA’s long-term national Maternity Wise program works with health professionals Professional Practice and other audiences to promote evidence-based maternity care Do continuing education meetings improve profession- (http://www.maternitywise.org). E-mail: sakala@maternity- al practice and health outcomes? Do decision aids for wise.org. people facing treatment or screening decisions improve

January/February 2004 JOGNN 91 CLINICAL ISSUES

Legal Issues

given, based on a review of cases of uterine rupture. It is becoming more common for nurses to be named Diligence in assessing risk factors, following estab- individually in lawsuits, in part because consumers lished guidelines, and intervening promptly and judi- and plaintiff attorneys have become more sophisti- ciously will decrease the nurse’s liability. cated in knowing what to expect from nurses. Nurs- “Malpractice and the Neonatal Intensive-Care es are providing increasingly complex care under Nurse” highlights common areas of negligence challenging conditions, which exposes them to greater found in NICU nursing. The skill mix demanded by risk. Nurses are now seen as additional “deep pock- this high-technology, high-acuity environment often ets” from which damage claims can be redressed. blurs the line between nursing and medical practice. This series of articles highlights examples of mal- The five types of evidence used to establish the stan- practice risk in women’s health, obstetric, and neo- dard of care are discussed, and cases demonstrating natal nursing care. common malpractice allegations, including resusci- "Malpractice" occurs when a nurse has been neg- tation, respiratory distress, extravasations, hypo- ligent, in that his or her nursing actions fell below glycemia, and medication errors, are highlighted. the expected standard of care practiced by nurses More than one fourth of those who reach age 65 with a similar background and in a similar specialty. will live in a nursing home before they die. “Liabili- Four basic elements must be present before the ty in the Care of the Elderly” reviews common areas plaintiff, the party who is alleging the malpractice, of nursing home liability, such as pressure ulcers, can bring the lawsuit forward. It must be proven falls, failure or delay in treatment, and nutrition. that the nurse had a duty to the patient, that there Outcomes of recent nursing home negligence suits was a breech of that duty, that harm occurred to the and strategies for risk prevention are presented. patient, and that it was the breech of that duty that Across all these patient populations, the nursing resulted in the harm to the patient. The last item, process of assessment, diagnosis, planning, imple- also known as proximate cause, is the most impor- mentation, and evaluation is key to meeting the tant of the four elements, because without the result- client’s individual needs. If any of the steps is missed, ant damage, no legal wrong has been committed. the safety of the patient is in jeopardy and the nurse The author of “Maternal or Fetal Heart Rate? has violated the standard of care. Plaintiff attorneys Avoiding Intrapartum Misidentification” reviews use failure to use the nursing process as evidence several cases in which the maternal heart rate was that the nurse has breached the duty to the patient. misidentified as the fetal heart rate after fetal demise, Adherence to standards of care, adequate documen- leading to unnecessary interventions. Are we missing tation, effective communication skills, and a caring an essential first step in assessment of the labor attitude are some of the best tactics to decrease nurs- patient? Guidelines to confirm fetal life and prevent es’ liability. misidentification are proposed. “VBAC: Safety for the Patient and the Nurse” M. Terese Verklan addresses changing guidelines for vaginal birth after Guest Editor cesarean. Implications for fetal monitoring are

92 JOGNN Volume 33, Number 1 CLINICAL ISSUES

Maternal or Fetal Heart Rate? Avoiding Intrapartum Misidentification Michelle L. Murray

Electronic fetal monitoring technology is capable confirming fetal life prior to application of the mon- of monitoring and recording maternal heart rate itor (American Academy of Pediatrics [AAP] and (MHR) patterns that mimic fetal heart rate (FHR) pat- American College of Obstetricians and Gynecolo- terns. The ability to distinguish one from the other gists [ACOG], 2002). The simple act of confirming requires knowledge of FHR and MHR characteristics fetal life before applying the monitor could prevent and monitoring technology. Application of this knowl- additional emotional trauma to parents, unnecessary edge may prevent fetal injury and death. This article emergent cesarean sections, and malpractice suits, reviews heart rate monitoring technology and the sim- and would also conserve health care resources. ilarities and differences between MHR and FHR base- Only a few authors have written about maternal lines, accelerations, and decelerations. Three case heart rate (MHR) patterns and their characteristics reports are described in which the MHR was mistaken (Menihan & Zottoli, 2001; Murray, 1997; Murray for the FHR prior to the diagnosis of fetal demise. & Urbanski, 2002; Sherman et al., 2002; Swayze, Guidelines to confirm fetal life and prevent misidenti- 1998; Yamashiro et al., 1988). Medical and nursing fication are proposed. JOGNN, 33, 93-104; 2004. writers and FHR monitor manuals have not DOI: 10.1177/0884217503261161 addressed the differences and similarities between Keywords: Fetal demise—Fetal monitoring— MHR and FHR patterns, nor have they discussed Liability—Nursing care the link between misidentification and litigation (GE Medical Systems Information Technologies, 2001; Accepted: April 2003 Hewlett Packard, 1995). This article presents characteristics of fetal and Every year, lawsuits are filed involving cases in maternal baseline heart rates, accelerations, and which health care providers failed to differentiate decelerations. In addition, recommendations are the maternal from the fetal heart rate pattern in elec- made about development of guidelines for confirm- tronic fetal monitoring. Fetal monitors may record ing fetal life prior to monitor application to prevent maternal heart rate (MHR) patterns that mimic fetal misidentification of the MHR as the FHR. Also heart rate (FHR) patterns. This may result in the included in this article are reports on cases in which health care provider’s failure to diagnose fetal misidentification of heart rate signals in fetal demise demise on the patient’s admission or a delay in diag- led to litigation. nosis of fetal compromise or death. The phenomenon of recording the MHR through a spiral elec- Signal Detection trode attached to a deceased fetus has been extensively documented (Herbert, Stuart, & Butler, 1987; Herman, Ron-El, Arieli, Schreyer, & Caspi, The Doppler Device and Ultrasound 1990; McWhinney, Knowles, Green, & Gordon, Transducer 1984; Yamashiro, Scales, & Ng, 1988). A recent An ultrasound transducer placed correctly over perinatal care publication provided no guideline for the fetal heart should reliably acquire the FHR sig-

January/February 2004 JOGNN 93 FIGURE 1 Tracing of MHR near 87 bpm and doubling of the MHR near 174 bpm, which was erroneously interpreted as the FHR. nal in 90% of women (Klapholz, Schifrin, & Myrick, 240 bpm will be printed at half the actual rate; for exam- 1974). The placement and the angle of transmission of the ple, a rate of 250 bpm will be printed as a rate of 125 sound waves emitted by the hand-held Doppler device or bpm (Hewlett Packard, 1995). Occasionally, the FHR the ultrasound transducer will determine which tissue monitor will record the presence of a heart beat in the movement is used to calculate the rate. The sounds emit- case of fetal demise. The maternal-to-fetal electrical con- ted from the fetal monitor are not the actual fetal heart ductivity produces a weak maternal signal that is easily tones. Thus, it is best to avoid the word audible in docu- detected due to electronic enhancement by automatic gain mentation because such sounds may not be those of the control (Achiron & Zakut, 1984; Schneiderman, Wax- FHR. Electronically generated, they reflect the FHR as man, & Goodman, 1972; Timor-Tritsch, Gergely, & determined by the shift in ultrasound waveform frequen- Abramovici, & Brandes, 1974). cy (Doppler shift), which is created by the closure of the fetal mitral and tricuspid valves during systole (Hutson & Fetal Life Confirmation Petrie, 1986). In situations of suspected fetal demise or when the origin of the heart signal is in question, it is best Because fetal monitoring technology cannot detect a to auscultate fetal heart tones using a fetoscope, stetho- difference between a fetal and maternal signal source, the scope, or Pinard stethoscope rather than a hand-held user of the fetal monitor is responsible for confirming Doppler device or the ultrasound transducer. fetal life prior to monitor use and then continuing to con- Second-generation monitors using ultrasound technol- firm that the fetus is the signal source. It may appear easy ogy accurately calculate the FHR. However, double to confirm the signal source as fetal versus maternal by counting of the MHR may occur if aortic wall movement comparing the maternal pulse with the audible fetal mon- during maternal systole is nearly identical to the duration itor sound (Menihan & Zottoli, 2001). However, the of aortic wall movement during diastole, and the fetal chance of error and misidentification is enhanced when a monitor software cannot detect a difference between the hand-held Doppler or the fetal monitor ultrasound trans- two. Instead of counting a beat of the heart as one, two ducer is used, especially when the MHR is greater than will be counted, which doubles the actual rate. Often, the 100 bpm (Lackritz, Schiff, Gibson, & Safon, 1978). doubled maternal rate appears to have exaggerated vari- Therefore, to reduce the chance of misidentification, there ability. Figure 1 displays a tracing in which a doubled should be simultaneous palpation of the maternal radial MHR with increased variability was interpreted as the pulse for a minimum of 1 minute while listening to the FHR. Fetal demise had occurred, but fetal life had not device sounds. been confirmed before the monitor was applied. In addition, fetal life should be confirmed by palpation of fetal movement or auscultation of fetal heart tones The Spiral Electrode with a fetoscope, stethoscope, or Pinard stethoscope A fetal spiral electrode affixed to the presenting part (McWhinney et al., 1984). Fetal movement should be pal- receives cardiac impulses and transmits them to the fetal pated by gently resting the hand on the maternal monitor for calculation of a rate and printing. The FHR abdomen. Pushing down too forcefully may cause the strip can print rates between 30 and 240 beats per minute deceased fetus to move away and then toward the hand (bpm) when using USA paper. Heart rates greater than and be falsely interpreted as fetal movement. If fetal heart

94 JOGNN Volume 33, Number 1 FIGURE 2 Spiral electrode tracing of a flat MHR baseline at 140 bpm with artifact, in a patient with preeclampsia, diabetes, and severe hypoglycemia (22 mg/dl). The baby was stillborn. tones cannot be heard and movement is not confirmed by channel (Corometrics, Wallingford, CT) or the top of the palpation, limited obstetric ultrasonography will be need- uterine activity channel (Agilent Technologies, Santa ed to confirm fetal life before the monitor is used. Clara, CA). Fetal movement profile marks may be record- If fetal life is confirmed prior to monitor application, ed when the ultrasound transducer is moved back and but the maternal pulse and ultrasound transducer-generated forth across the abdomen or detects movement of the rates are similar, the nurse should identify the location of maternal aorta, even in the absence of fetal life (Hutson the fetal back using the second Leopold’s maneuver and & Petrie, 1986). Therefore, computer-generated marks reposition the transducer over the fetal heart. Two distinct should be used to confirm fetal movement only when the rates should then be obtained, one fetal (printed) and the heart rate printout has been confirmed to be that of the other maternal. fetus. If the MHR and apparent FHR are identical or nearly Failure to confirm fetal life before monitor application identical, and a hand-held Doppler was used before appli- may result in unnecessary interventions. For example, cation of the fetal monitor, nurses should perform fetal Achiron and Zakut (1984) reported that a stethoscope scalp stimulation or acoustic stimulation to evoke FHR and ultrasound transducer failed to acquire an FHR, yet acceleration if the EFM was applied without prior confir- real-time ultrasonography was not employed to visualize mation of fetal life. If there is no fetal response to these absent fetal cardiac motion. Instead, an amniotomy was actions, and fetal demise is suspected, real-time ultra- performed, a spiral electrode was inserted, and the MHR sonography should be used to confirm fetal demise (Her- was printed with “wide beat-to-beat changes concomitant bert et al., 1987; Schneiderman et al., 1972; Yamashiro with regular recurring artifact” (p. 126). et al., 1988). Spiral electrode application is not helpful in confirming Fetal and Maternal Heart Rate Pattern fetal life, because the printed MHR and artifact may still be misinterpreted as an FHR (Schneiderman et al., 1972; Characteristics Trimor-Tritsch et al., 1974). Large maternal QRS complexes can be transmitted through the cells of a fetus who The Baseline Rate has recently died to the spiral electrode-cable-fetal moni- The normal range for a preterm FHR baseline is tor system without filtration or interference (Achiron & between 120 and 160 bpm, whereas the full-term and Zakut, 1984; Barrett & Boehm, 1980; Fehrmann, 1980; postterm FHR baseline should be between 100 and 160 Herbert et al., 1987; Herman et al., 1990; Hutson & bpm (Murray, 1997). The normal range of the MHR Petrie, 1986; Klapholz et al., 1974; McWhinney et al., baseline is considered to be 60 to 100 bpm (Bhuinneain, 1984; Schneiderman et al., 1972; Timor-Tritsch et al., McKenna, O’Herlihy, & Sugrue, 2000). 1974). It remains unknown how long a deceased fetus can continue to conduct maternal electrical impulses (Timor- Bradycardia Tritsch et al., 1974). Unlike first-generation fetal monitors that doubled It may be misleading to confirm fetal life by relying on slow FHRs, today’s second-generation monitors print a the fetal movement detection or fetal movement profile slow FHR accurately when the ultrasound transducer is marks on the fetal monitor paper instead of using palpa- used, unless the rate is less than 50 bpm. Fetal heart rates tion. These marks may appear at the bottom of the FHR lower than 50 bpm will not be printed unless a spiral elec-

January/February 2004 JOGNN 95 FIGURE 3 Second-stage MHR of 90-95 bpm with accelerations, and FHR of 150 bpm with tachycardia, absent short-term variability, and variable decelerations. trode is used (Hewlett Packard, 1995). The bradycardic in onset, often jagged in appearance, vary in shape, may FHR typically is smooth or has markedly diminished vari- be pointed at the top, and can last longer than 2 minutes ability (Perkins, 1980). In contrast, the MHR below 100 (Murray, 1997; Murray & Urbanski, 2002). Uniform bpm will fluctuate or have variability. accelerations have a slanted onset, look similar from one to the next, and peak after 20 or more seconds. They Tachycardia often appear rounded or hump-like, with one or two Fetal tachycardia is considered to be a rate greater than humps. 160 bpm. The FHR pattern may appear smooth or Maternal heart rate accelerations have only one hump nearly flat. If there is not a tachyarrhythmia, maternal and always coincide with contractions (see Figure 3). fever, chorioamnionitis, fetal acidemia, and labor intoler- They may be identical in their shape and timing to fetal ance have been linked to fetal tachycardia greater than uniform accelerations. The MHR can be differentiated 180 bpm. from the FHR by evaluating the amplitude or height of Maternal tachycardia is defined as a baseline heart rate MHR accelerations, which often exceed the height of fetal greater than 100 bpm. Anxiety, a low-grade temperature uniform accelerations as labor progresses. In addition, elevation, fever, and chorioamnionitis have been associat- MHR accelerations seen during the second stage with ed with an MHR between 100 and 130 bpm (Yamashiro pushing are often longer than fetal accelerations and last et al., 1988). There are case reports in which an MHR the duration of the contraction (Sherman et al., 2002). greater than 120 bpm was misinterpreted as the FHR They also increase in proportion to the strength and pain (Achiron & Zakut, 1984; Maeder & Lippert, 1972; associated with contractions (Koh et al., 1979). MHR McWhinney et al., 1984; Timor-Tritsch et al., 1974). In accelerations have been reported that were 60 bpm above one case, a 32-year-old woman in her 30th week of preg- the baseline in situations of fetal demise (Herbert et al., nancy developed automatic atrial (ectopic) tachycardia 1987; Yamashiro et al., 1988). Therefore, if the recorded with a heart rate exceeding 150 bpm. This rare arrhyth- heart rate accelerates during pushing and lasts approxi- mia started and stopped spontaneously, could not be pre- mately the duration of the contraction, actions should be dictably induced or terminated, and increased the risk of taken immediately to confirm the signal source. tachycardia-induced congestive cardiomyopathy and heart failure (Kam, Lee, & Teo, 1994). When the tachy- Decelerations cardic MHR baseline approaches 140 bpm, it may flatten, Fetuses demonstrate decelerations or a vagal response especially when a woman is diabetic and/or hemodynam- to various stimuli. For example, they will produce a curvi- ically or metabolically unstable (see Figure 2). Artifact, linear deceleration during the contraction when they due to temporary signal interruption, a weak signal, or experience head compression (early deceleration). If the signal loss, may also be printed as lines that move above umbilical cord is compressed, they may produce a decel- and below the level of the MHR (Achiron & Zakut, eration in the shape of a U, V, or W, known as a variable 1984; Barrett & Boehm, 1980; Herbert et al., 1987). deceleration. A late deceleration, beginning after the contraction onset and not returning to baseline until after the Accelerations contraction ends, is thought to reflect placental insuffi- There are two types of fetal accelerations: spontaneous ciency and fetal hypoxia. and uniform. Fetal spontaneous accelerations are abrupt

96 JOGNN Volume 33, Number 1 FIGURE 4 Maternal decelerations. Top tracing is the FHR between 130 and 140 bpm. Bottom tracing reflects a maternal baseline near 95 to 108 bpm with decelerations that mimic fetal variable decelerations.

Adults experiencing pain may decrease their heart rates (Lackritz et al., 1978). Despite the absence of fetal move- (Bouchard & Labelle, 1982). In fact, the heart rates of ment for 4 days before the patient’s hospital admission, women in labor may decelerate during contractions, but no FHR was ever acquired by auscultation prior to EFM not between contractions (Timor-Tritsch et al., 1974). application and use. Although fetal life was never con- Maternal decelerations can even mimic the shapes of firmed, a spiral electrode was applied and an intrauterine early, variable, and late fetal decelerations (see Figure 4). pressure catheter was inserted. A stillborn, macerated Although limited, research has found that the etiology of fetus was delivered after 10 hours of labor. Yamashiro et maternal decelerations is likely multifactorial and al. (1988) reported an MHR pattern of decelerations that includes unpleasant cognitive stimuli, emotions, muscle was interpreted as fetal late decelerations and a repeat tensing, and/or hypertension-baroreceptor activation- cesarean section was subsequently performed. vagal stimulation (Ford, Scholey, Ayre, & Wesnes, 2002; Friedman, Putnam, & Hamberger, 1990; Jennings, van Guidelines to Confirm Fetal Life der Molen, Somsen, & Brock, 1991; Palomba, Sarlo, Angrilli, Mini, & Stegagno, 2000; Zimmer, Vossel, & Professional guidelines do not currently indicate that a Frohlich, 1990). Caffeine ingestion may limit the depth of nurse, midwife, or physician should confirm fetal life decelerations. For example, researchers noted that non- before fetal monitor application or differentiate MHR caffeine users had larger decelerations than heavy caffeine from FHR patterns (AAP & ACOG, 2002; Association of users (Rizzo, Stamps, & Fehr, 1988). Women’s Health, Obstetric and Neonatal Nurses [AWHONN], 1998a, 1998b). Nurses should ensure, however, that hospital protocols require confirmation of fetal life before monitor application. This step will reduce the risk of failure to recognize fetal demise on admission, Professional guidelines do not currently documentation errors related to confusion of heart rate indicate that a nurse, midwife, or physician patterns, false hope of fetal life, health care provider confusion, patient mistrust, and unnecessary intervention. should confirm fetal life before fetal monitor application or differentiate Technology to Differentiate the MHR From the FHR MHR from FHR patterns. The MHR is initially determined by palpation of the radial pulse, and fetal life is detected using palpation of movement or direct auscultation of FHR. Once the fetal monitor is in place, the optimal method to continue to Misinterpretation of MHR decelerations as FHR compare and contrast MHR and FHR is to produce a decelerations may result in unnecessary actions or sur- continuous maternal and fetal printout. Three techniques gery. In one case report, the MHR baseline was 120 to are available for this purpose. First, a second ultrasound 130 and was accompanied by maternal decelerations transducer can be placed over the maternal heart. More

January/February 2004 JOGNN 97 commonly, the MHR may be obtained from the maternal of arrhythmia (Murray, 1997; Murray & Urbanski, pulse oximeter on the EFM when the oximeter probe is 2002). Miltner (2002) identified interpretation of EFM placed on the maternal finger. Rarely, the application of data as the third most common nursing action by labor the maternal electrocardiogram (ECG) device for the fetal and delivery nurses, after documentation of care and monitor is used to generate a maternal printout. encouraging and reassuring the mother during labor. She Once the two patterns are displayed on the fetal mon- found that nurses spent 72.3% of their time providing itor paper, it is reasonable to expect the baseline of the direct or indirect patient care if they had one patient, MHR to be significantly lower and the MHR variability 50.2% of their time providing care if they had two significantly greater than the FHR pattern at all stages of patients, and only 26.7% of their time with each of three labor (Sherman et al., 2002). If the image on the paper patients. Based on these findings, it is clear that when a coincides with the new image displayed by a second nurse is tasked with caring for more than one patient, device, it should be suspected that the MHR has been especially those requiring complex care, there is an recorded. increased risk of pattern misinterpretation, signal source Monitors differ in their methods of identifying dupli- misidentification, injury, and potential litigation. cation of heart rates. The Corometrics fetal monitor The AAP and ACOG (2002) recommended review of Model 126 has a heartbeat coincidence detection feature printed tracings for image interpretation. They also rec- that prints two overlapping hearts at the top of the FHR ommended that “all fetal heart rate tracings should be channel if the signal sources are the same (GE Medical easily retrievable from storage so that the events of labor Systems Information Technologies, 2001). If two distinct can be studied in proper relationship to the tracings” (p. signal sources are detected, the hearts separate and appear 134). AWHONN, in Fetal Heart Monitoring Principles side by side. Hewlett Packard fetal monitors automatical- and Practices, stated, “Until further research has been ly activate cross-channel verification when there are published about reliability and validity of interpretation duplicate signal sources. Small question marks appear at of maternal-fetal data solely based on visualization of the the top of the FHR channel. When two different signal computer screen, consideration should be given to con- sources are identified, the question marks disappear. tinuing the practice of printing of the paper tracing direct- Spacelabs monitors (Redmond, WA) will print ques- ly from the fetal monitor while care is being provided” tion marks below heart rate tracings detected from the (AWHONN, 2003, p. 210). Therefore, analysis of the same or duplicate signal source. When the monitor is set paper printout, rather than the image on a computer to automatic or manual, it will also offset the second monitor, and retention of the paper tracing or a microfilm ultrasound tracing (US 2) by subtracting 30 bpm. The copy are desired and achievable and should improve the word add will appear near the question marks so that quality of interpretation and practice. users will remember to add 30 bpm when documenting the lower baseline rate. Once two distinct signal sources Education and Competency Validation are identified, the question marks disappear. Hospitals should support and provide nursing educa- Palpation should be used to confirm fetal movement. tion related to MHR and FHR pattern recognition as well Fetal movement detection or fetal movement profile as the opportunity to obtain clinical expertise with the marks on the fetal monitor paper may be misleading. equipment available to differentiate the two. Competency Computer-generated marks should be used only to moni- validation is best done by observing the nurse’s perform- tor continued fetal movement after the heart rate printout ance at the bedside. Additionally, hospitals should verify has been confirmed to be that of the fetus. These marks the nurse’s ability to assess fetal life, validate the image may appear at the bottom of the FHR channel (Coromet- source by application of additional equipment, and dis- rics) or the top of the uterine activity channel (Hewlett tinguish similarities and differences between FHR and Packard). Fetal movement profile marks may be recorded MHR patterns. when the ultrasound transducer is moved back and forth across the abdomen or when the ultrasound transducer is Case Reports over the maternal aorta, even in the absence of fetal life (Hutson & Petrie, 1986). Case 1 Time Needed for Correct Interpretation In 1998, D. J. was admitted to a community hospital To avoid misinterpretation, image recognition should at approximately 2130 for a trial of labor after cesarean be unrushed and systematic. A comprehensive, systematic (TOLAC). Initial monitoring revealed an FHR of 150, review of the tracing includes evaluation of the pattern for with spontaneous accelerations. She labored during the the baseline range, short-term variability, long-term vari- evening until the following morning. At 0500, she com- ability, accelerations, decelerations, artifact, and evidence plained of sharp abdominal pain, which was immediately

98 JOGNN Volume 33, Number 1 FIGURE 5 Tracing from patient attempting trial of labor after cesarean, when pushing began, approximately 30 minutes after a complaint of sharp abdominal pain.

FIGURE 6 Tracing from TOLAC patient after 2 ½ hours of pushing, in which maternal heart rate rather than FHR was now being recorded. Note maternal uniform accelerations with each contraction. reported to the obstetrician. The physician concluded that erations are seen during the second stage, it is a good the pain was due to the epidural wearing off and asked habit to monitor the MHR and FHR simultaneously; for the anesthesiologist to rebolus the epidural. Two addi- example, with a pulse oximeter attached to the fetal mon- tional epidural boluses were subsequently administered. itor. Ramsey, Johnston, Welter, and Ogburn (2000) At 0530, D. J. began to push. As seen in Figure 5, decel- reported a similar case of uterine rupture and fetal erations were noted during contractions. By 0800, the demise. They recommended meticulous labor manage- tracing had a different appearance, with uniform acceler- ment and close attention to both maternal and fetal vital ations noted during contractions, as seen in Figure 6. The signs to provide early identification of fetal compromise nurse had recorded an MHR of 130 bpm. A forceps deliv- due to acute uterine rupture. ery occurred at 0822 of an apparently stillborn male weighing 7 lb 10 oz. In spite of resuscitative efforts, the Case 2 Apgar scores remained 0 at 1 and 5 minutes. The cord An afebrile, 22-year-old, single, term primigravida was artery gases were pH 6.33; pCO2. 227 mm Hg; pO2, 17 admitted at 0702 with a history of spontaneous rupture mm Hg; and HCO3, 11.7, with a base excess of –35 of membranes, clear fluid, and contractions every 1 to 3 mmol/L. The uterus had ruptured. A lawsuit was filed and minutes. The FHR was reactive, with bpm in the range of the case was settled out of court. the 130s and spontaneous accelerations during and between contractions. At 1030, the woman’s cervix was Discussion of Case 1. Usually, as the fetus descends dilated 3 cm, 80% effaced, with a –2 fetal station. At and there is an increase in the intensity of cord and head 1634, the cervix was dilated 4 to 5 cm, 100% effaced, compression, variable decelerations deepen and lengthen. and 0 station. At 1650, oxytocin augmentation began. At In this case, the absence of this typical change was over- 2023, the cervix was still dilated 5 cm with no change in looked by the nurse and physician. When uniform accel-

January/February 2004 JOGNN 99 FIGURE 7 Terminal fetal bradycardia in a patient with chorioamnionitis.

FIGURE 8 Maternal tachycardia mistaken for FHR in patient with chorioamnionitis, 30 minutes after fetal bradycardia was noted and intrauterine resuscitation was attempted using terbutaline and knee-chest position. station. At 2230, chorioamnionitis was diagnosed and ly to recover from a terminal bradycardic rate to a stable ampicillin was administered. At 2247, her temperature heart rate in the 120s. Chorioamnionitis is associated was 101.9oF. Meconium was noted the next morning at with maternal fever and maternal and/or fetal tachycar- 0355, and an amnioinfusion was initiated. Terminal dia. Knowledge of the FHR from admission throughout bradycardia began at 0422, as seen in Figure 7, and there the labor is essential to recognize the significance of base- was a cessation of any clear FHR pattern after 0427. The line changes. Researchers have documented that an FHR patient was placed in a knee-chest position and intra- baseline between 160 and 179 bpm for more than 3 min- venous terbutaline was administered. The monitor began utes was related to acidemia in 17% of newborns. When to produce a tracing of a heart rate in the 120s (see Fig- the rate was 180 bpm or more for greater than 1 minute, ure 8). Intrauterine fetal demise was diagnosed at 0800, 53% of neonates were acidemic (Gilstrap, Hauth, Schi- after a bedside ultrasound indicated lack of fetal cardiac ano, & Connor, 1984). activity and a hand-held Doppler revealed no fetal heart rate. At 1832, following a failed vacuum and failed for- Case 3 ceps delivery, a 9 lb 10 3/4 oz stillborn female was deliv- A patient with a history of cocaine abuse and cigarette ered with a loop of cord around her body. The cause of smoking had a negative toxicology screen when she was fetal death was cardiogenic shock due to E. coli sepsis. A admitted to labor and delivery. Her pregnancy had been lawsuit was settled out of court. uncomplicated until, at 27 5/7 weeks, she vomited twice and tightening and backache began at 1230. She was sub- Discussion of Case 2. A fetus who had developed sequently admitted to the hospital. That evening, between tachycardia in the setting of chorioamnionitis was unlike-

100 JOGNN Volume 33, Number 1 FIGURE 9 Tracing from patient at 25 weeks gestation with past history of substance abuse, with a closed cervix, when she began thrashing and asking for pain medication. The recording is of the MHR with occasional doubling.

FIGURE 10 FHR tracing from patient at 25 weeks gestation with abdominal pain and history of substance use, showing brief variable decelerations typical of FHR rather than MHR, and continued uterine hyperactivity after one dose of terbutaline. MHR at this time was 86 bpm.

1709 and 1726, the FHR was 130 to 140 bpm but After the second dose of terbutaline, a tracing was dropped within 5 minutes to less than 120 bpm, followed again obtained of an FHR in the 120s (see Figure 11), by two variable decelerations that lasted 40 to 50 seconds showing continued uterine activity and a rate of 120 with with evidence of uterine hyperactivity. variability but no decelerations. Although the MHR was At 1819, her cervix was closed, 60% effaced, with the not assessed while this tracing was generated, the MHR fetus at 0 station, and she was vomiting. At 1825, she was was 122 bpm at 2025, shortly after the tracing was thrashing in the bed and asking for pain medication. The obtained. This heart rate, in the 120s, was later thought monitor tracing at that time (see Figure 9) recorded only to be the MHR. At 2100, Compazine (GlaxoSmithKline, the MHR, with intermittent, brief doubling of the MHR Philadelphia, PA) and Nubain (DuPont Pharmaceuticals with uterine hyperactivity. Uterine hyperactivity contin- Inc., Manati, Puerto Rico) were administered. Contrac- ued without further cervical dilation, despite the adminis- tions ceased. tration of subcutaneous terbutaline at 1915 and 1945. At 2315, an ultrasound examination was requested The tracing after the first dose revealed an FHR in the because of the “difficulty obtaining the fetal heart rate.” 120s with brief decelerations (see Figure 10), which could It revealed an absence of fetal cardiac motion. At 0023, be distinguished from the MHR because MHR decelera- the fetal monitor was removed. At 0025, portable ultra- tions usually last the length of the contraction. The MHR sound again documented the absence of fetal cardiac had been recorded at 86 bpm. motion. At 0250, the ultrasonography technician performed a third scan. A concealed hemorrhage, retropla-

January/February 2004 JOGNN 101 FIGURE 11 Tracing from patient at 25 weeks gestation with history of substance abuse and abdominal pain, after second dose of terbutaline. In retrospect, this tracing was probably the MHR. cental abruption, and fetal demise were diagnosed. Induc- Conclusion tion with oxytocin was initiated. At 2100, more than 24 hours after admission, the membranes were artificially The confirmation of fetal life prior to fetal monitor ruptured, revealing bloody amniotic fluid. At 2256, a application can prevent misinterpretation and erroneous stillborn male was delivered. At 2259, the placenta was documentation and can expedite the diagnosis of fetal delivered with “a large amount of clots.” Placental demise. MHR patterns have unique features, such as dou- pathology revealed focal early acute chorioamnionitis. bling of the MHR when the ultrasound transducer is No autopsy was performed. No cultures were obtained. used, decelerations during contractions but not between The plaintiff expert obstetrician thought the fetus contractions, and accelerations with painful contractions, probably died near 1940. The fetus was probably asphyx- especially during the second stage of labor and pushing. iated at 1835, just 25 minutes after the woman was Once the maternal signal source has been identified, admitted to the hospital. Although the care provided by actions should be taken to confirm fetal life and acquire the nurses and physician did not cause the abruption or an accurate fetal signal. Current fetal monitoring technol- demise, the family sued and the case was settled out of ogy may be used to differentiate an FHR pattern from an court. MHR pattern, which may prevent misinterpretation, failure to recognize intrapartum fetal demise, unnecessary Discussion of Case 3. When gaps appear in a heart rate actions and surgery, and delayed delivery of a compro- tracing, as seen in the initial tracing (see Figure 9), it is mised fetus. important to use additional technology to confirm and differentiate the FHR from the MHR. After subcutaneous terbutaline is administered, maternal tachycardia is an REFERENCES expected finding, increasing the risk of mistaking MHR Achiron, R., & Zakut, H. (1984). Misinterpretation of fetal for FHR, which most likely occurred in the tracing in Fig- heart rate monitoring in case of intrauterine death. Clini- ure 11. cal and Experimental Obstetrics and Gynecology, 11(4), Uterine hyperstimulation and thrashing in the bed 126-129. when the cervix was closed should have raised suspicions American Academy of Pediatrics and American College of of placental abruption. Abruption should also have been Obstetricians and Gynecologists. (2002). Guidelines for suspected when the pain was so severe that a narcotic perinatal care (5th ed.). Elk Grove Village, IL: Author. Association of Women’s Health, Obstetric and Neonatal Nurs- agonist/antagonist, such as Nubain, was required. Terbu- es. (1998a). Clinical competencies and education guide: taline should not be administered when abruption is sus- Antepartum and intrapartum fetal heart rate monitoring pected unless a fully staffed operating room is ready to (3rd ed.). Washington, DC: Author. perform a cesarean section, because terbutaline may Association of Women’s Health, Obstetric and Neonatal Nurs- worsen the abruption (Combs, Nyberg, Mack, Smith, & es. (1998b). Standards and guidelines for professional Benedetti, 1992; Henderson, Goldman, & Divon, 1992; nursing practice in the care of women and newborns (5th Morgan, Berkowitz, Thomas, Reimbold, & Quilligan, ed.). Washington, DC: Author. 1994; Pearlman, Tintinalli, & Lorenz, 1990; Williams, McClain, Rosemurgy, & Colorado, 1990).

102 JOGNN Volume 33, Number 1 Association of Women’s Health, Obstetric and Neonatal Nurs- Kam, R. M. L., Lee, C. Y., & Teo, W. S. (1994). A pregnant lady es. (2003). Fetal heart monitoring principles and practices with narrow complex tachycardia. Singapore Medical (3rd ed.). Washington, DC: Author. Journal, 35(1), 100-101. Barrett, J. M., & Boehm, F. H. (1980). Documentation of recent Klapholz, H., Schifrin, B. S., & Myrick, R. (1974). Role of fetal demise with simultaneous maternal and fetal heart maternal artifact in fetal heart rate pattern interpretation. rate monitoring. Obstetrics and Gynecology, 55(3, Obstetrics and Gynecology, 44(3), 373-378. Suppl.), 28S-30S. Koh, K. S., Monfared, A. M., Masdrakis, G. B., Allen, J. W., Bhuinneain, M. N., McKenna, P., O’Herlihy, C., & Sugrue, D. Koyal, S. N., Jilek, J., et al. (1979). R-pulse wave timing: (2000). The domain analysis of maternal heart rate vari- A technique for continuous cardiovascular monitoring in ability in normal pregnancy—A longitudinal study obstetrics-preliminary report. American Journal of [Abstract No. 667]. American Journal of Obstetrics and Obstetrics and Gynecology, 135(3), 352-359. Gynecology, 182(1, Pt. 2), S200. Lackritz, R., Schiff, I., Gibson, M., & Safon, L. (1978). Decel- Bouchard, M. A., & Labelle, J. (1982). Voluntary heart deceler- erations on fetal electrocardiography with fetal demise. ation: A critical evaluation. Biofeedback & Self Regula- Obstetrics and Gynecology, 51(3), 367-368. tion, 7(2), 121-137. Maeder, H. P., & Lippert, T. H. (1972). Misinterpretation of Combs, C. A., Nyberg, D. A., Mack, L. A., Smith, J. R., & fetal heart rate recordings in fetal death. European Jour- Benedetti, T. J. (1992). Expectant management after sono- nal of Obstetrics and Gynecology, 6, 167-170. graphic diagnosis of placental abruption. American Jour- McWhinney, N. A., Knowles, S., Green, H. L., & Gordon, H. nal of Perinatology, 9(3), 170-174. (1984). Transmission of the maternal electrocardiograph Fehrmann, H. (1980). Misdiagnosis of fetal heart rate during a via a fetal scalp electrode in the presence of intrauterine twin labour. Case report. British Journal of Obstetrics and death. Case report. British Journal of Obstetrics and Gynaecology, 87(12), 1174-1177. Gynaecology, 91(10), 1046-1048. Ford, C. E., Scholey, A. B., Ayre, G., & Wesnes, K. (2002). The Menihan, C. A., & Zottoli, E. K. (2001). Electronic fetal moni- effect of glucose administration and the emotional content toring. Concepts and applications. Philadelphia, PA: Lip- of words on heart rate and memory. Journal of Psy- pincott. chopharmacology, 16(3), 241-244. Miltner, R. S. (2002). More than support: Nursing interventions Friedman, D., Putnam, L., & Hamberger, M. J. (1990). Cardiac provided to women in labor. Journal of Obstetric, Gyne- deceleration and E-wave brain potential components in cologic, and Neonatal Nursing, 31, 753-761. young, middle-aged and elderly adults. International Morgan, M. A., Berkowitz, K. M., Thomas, S. J., Reimbold, P., Journal of Psychophysiology, 10(2), 185-190. & Quilligan, E. T. (1994). Abruptio placentae: Perinatal GE Medical Systems Information Technologies. (2001). Coro- outcome in normotensive and hypertensive patients. metrics7 120 series operator’s manual (manual p/n American Journal of Obstetrics and Gynecology, 170(6), 2004388-002 rev. b), Milwaukee, WI. 1595-1599. Gilstrap, L. C. III, Hauth, J. C., Schiano, S., & Connor, K. D. Murray, M. (1997). Antepartal and intrapartal fetal monitoring (1984). Neonatal acidosis and method of delivery. Obstet- (2nd ed.). Albuquerque, NM: Learning Resources Inter- rics and Gynecology, 63(5), 681-685. national. Henderson, C. E., Goldman, B., & Divon, M. Y. (1992). Rito- Murray, M., & Urbanski, P. (2002). Essentials of fetal monitor- drine therapy in the presence of chronic abruptio placen- ing (2nd ed.). Albuquerque, NM: Learning Resources tae. Obstetrics and Gynecology, 80(3, Pt. 2), 510-512. International. Herbert, W. N. P., Stuart, N. N., & Butler, L. S. (1987). Elec- Palomba, D., Sarlo, M., Angrilli, A., Mini, A., & Stegagno, L. tronic fetal heart rate monitoring with intrauterine fetal (2000). Cardiac responses associated with affective pro- demise. Journal of Obstetric, Gynecologic, and Neonatal cessing of unpleasant film stimuli. International Journal Nursing, 16, 249-252. of Psychophysiology, 36(1), 45-57. Herman, A., Ron-El, R., Arieli, S., Schreyer, P., & Caspi, E. Pearlman, M. D., Tintinalli, J. E., & Lorenz, R. P. (1990). A (1990). Maternal ECG recorded in internal monitoring prospective controlled study of outcome after trauma dur- closely mimicking fetal heart rate in a recent fetal death. ing pregnancy. American Journal of Obstetrics and Gyne- International Journal of Gynecology and Obstetrics, cology, 162(6), 1502-1510. 33(3), 269-271. Perkins, R. P. (1980). Sudden fetal death in labor. The signifi- Hewlett Packard. (1995). Series 50 XM fetal/maternal monitor. cance of antecedent monitoring characteristics and clini- Fetal monitoring series 50 XM operating guide. (HP part cal circumstances. Journal of Reproductive Medicine, no. m1350-900 1p). Germany (A.00.00). 25(6), 309-314. Hutson, J. M., & Petrie, R. H. (1986). Possible limitations of Ramsey, P. S., Johnston, B. W., Welter, V. E., & Ogburn, P. L. Jr. fetal monitoring. Clinical Obstetrics and Gynecology, (2000). Artifactual fetal electrocardiographic detection 29(1), 104-113. using internal monitoring following intrapartum fetal Jennings, J. P., van der Molen, M. W., Somsen, R. J., & Brock, demise during VBAC trial. Journal of Maternal-Fetal K. (1991). Weak sensory stimuli induce a phase sensitive Medicine, 9(6), 360-361. bradycardia. Psychophysiology, 28(1), 1-10. Rizzo, A. A., Stamps, L. E., & Fehr, L. A. (1988). Effects of caffeine withdrawal on motor performance and heart rate

January/February 2004 JOGNN 103 changes. International Journal of Psychophysiology, 6(1), Yamashiro, V., Scales, P., & Ng, H. (1988). Fetal heart rate 9-14. monitoring casebook: Heart rate monitoring in a case of Schneiderman, C. I., Waxman, B., & Goodman, C. J. Jr. (1972). antepartum stillbirth. Journal of Perinatology, 8(3), 276- Maternal-fetal electrocardiogram conduction with intra- 281. partum fetal death. American Journal of Obstetrics and Zimmer, H., Vossel, G., & Frohlich, W. D. (1990). Individual Gynecology, 113(8), 1130-1133. differences in resting heart rate deceleration and task per- Sherman, D. J., Frenkel, E., Kurzweil, Y., Padua, A., Arieli, S., formance. International Journal of Psychophysiology, & Bahar, M. (2002). Characteristics of maternal heart 8(3), 249-259. rate patterns during labor and delivery. Obstetrics and Gynecology, 99(4), 542-547. Swayze, S. C. (1998). Electronic fetal monitoring. Are you mon- Michelle L. Murray, PhD, RNC, CNS, is a clinical associate itoring mother or fetus? Nursing, 28(1), 20. professor of nursing at the University of New Mexico and a Timor-Tritsch, I., Gergely, Z., Abramovici, H., & Brandes, J. M. labor and delivery staff nurse at Presbyterian Hospital, Albu- (1974). Misleading information from fetal monitoring in querque, NM. a case of intrapartum fetal death. Obstetrics and Gyne- cology, 43(5), 713-717. Williams, J. K., McClain, L., Rosemurgy, A. S., & Colorado, Address for correspondence: Michelle L. Murray, PhD, RNC, N. M. (1990). Evaluation of blunt abdominal trauma in Learning Resources International, Inc., P.O. Box 92050, Albu- the third trimester of pregnancy: Maternal and fetal con- querque, NM 87199-2050. E-mail: www.fetalmonitoring.com siderations. Obstetrics and Gynecology, 75(1), 33-37.

104 JOGNN Volume 33, Number 1 CLINICAL ISSUES

VBAC: Safety for the Patient and the Nurse Joan Drukker Dauphinee

During the 1970s and 1980s, some women History of Cesarean and VBAC fought for the opportunity to deliver vaginally after a cesarean birth (VBAC). The American College of Cesarean Birth Obstetricians and Gynecologists initially supported In Julius Caesar’s time, cesarean sections were VBAC for many low-risk women. Interventions performed on dead or dying women. Throughout increased and complications of VBAC were reported, the Middle Ages, women had cesarean births only as however, and recommendations changed. VBAC a last resort, as most women did not survive the pro- should be performed in hospitals equipped to care for cedure. However, some success during the Middle women at high risk. Nurses caring for patients under- Ages gave hope that the surgery would eventually be going VBAC should be able to recognize and respond successful. The first reported case of a woman sur- to the signs and symptoms of uterine rupture, includ- viving a cesarean section was in 1500 in Switzer- ing the most common symptom, which is a nonreas- land, where the husband delivered his child when his suring fetal monitor tracing. Nurses also should be wife could not deliver after several days of labor aware of the necessity for 24-hour blood banking, (Sewell, 1993). During the 19th century, saving the electronic fetal monitoring, on-site anesthesia cover- mother’s life became a possibility. It quickly became age, and continuous presence of a surgeon. JOGNN, clear that cesarean delivery could be helpful when 33, 105-115; 2004. DOI: 10.1177/0884217503261160 there were maternal or fetal complications. Keywords: Cesarean birth—Liability—Safety— In 1916, Dr. Cragin coined the motto, “Once a Uterine rupture—VBAC cesarean section, always a cesarean section.” He was Accepted: July 2003 concerned about the rate of primary cesarean deliveries and wanted practitioners to avoid the first cesarean delivery, or the woman would be subjected When Julius Caesar was allegedly born by cesarean to cesarean deliveries with future pregnancies. At delivery, it changed obstetrics forever! Before that that time, it was thought to be too dangerous to time, all children were born vaginally, but after this allow a mother to have a vaginal delivery after a first cesarean delivery, practitioners had an alterna- cesarean delivery (Flamm, 1997). Even if the mother tive way to deliver babies. With the advent of arrived at the hospital fully dilated, she was taken abdominal delivery, however, came questions about quickly to the operating room for a cesarean deliv- the safety and cost of a repeat cesarean versus a vagi- ery. As a result of this thinking, repeat cesarean nal delivery after having had a previous cesarean. In deliveries became the standard of care in the United this article, the history of VBAC (vaginal birth after States by the early 1960s. Anesthesia and surgical cesarean) is summarized and nursing considerations techniques improved, and the rate of cesarean deliv- for patient safety and management of liability during ery increased to 5% by 1970 and to 25% by 1988 VBAC are reviewed. (Carr, Burkhardt, & Avery, 2002). However,

January/February 2004 JOGNN 105 increased maternal morbidity and mortality and increased including bradycardia or prolonged decelerations. Addi- health care costs accompanied this growth. tional signs of uterine rupture were vaginal bleeding and loss of fetal station, which could occur with or without Evolving Standards for VBAC Management reported pain. ACOG (1994) recommended that plans for During the 1970s and 1980s, a few women fought for rapid diagnosis and intervention be in place before allow- the opportunity to deliver vaginally after a cesarean. Prac- ing women to attempt TOLAC. titioners were concerned about the safety of the mother ACOG (1994) now recommended that women should and her fetus, but a few allowed their patients to try a not be coerced into having a VBAC, but that mode of vaginal delivery after cesarean delivery. Many of those delivery should be based on the clinical circumstances and were successful. When researchers reported that vaginal the patient’s preference after counseling. Women with one births after cesarean deliveries (VBACs) could be safe as previous cesarean should be encouraged to try VBAC, well as cost-effective (Gibbs, 1980), practitioners began women with more than one previous cesarean should not allowing more trials of labor after cesareans (TOLACs) be discouraged, but women with prior classical incision and confidence grew as more evidence of good outcomes should be strongly discouraged. The 1994 committee was compiled. These triumphs started a national initiative opinion eliminated the specific recommendation of emer- to decrease the cesarean birth rate, especially repeat gency cesarean capability within 30 minutes from deci- cesareans that accounted for one third of all cesarean sion to incision. It stated that there was no increased risk deliveries (American College of Obstetricians and Gyne- with the use of oxytocin and that judicious use of cologists [ACOG], 1999a). Education began for nurses, prostaglandin gel appeared safe, with a caution that no physicians, and patients to meet this goal. randomized trials had been done. Epidural anesthesia was In 1982, ACOG published its first guidelines for vagi- still considered safe and thought to be an enticement for nal delivery after a previous cesarean birth. These guide- women who wanted to try VBAC but were afraid that lines indicated that VBACs should occur in hospitals they would have another painful labor that would end up equipped to care for high-risk mothers, including the in a cesarean delivery. Courses were offered for hospitals presence of 24-hour blood banking, electronic fetal mon- and physicians on how to reduce cesarean delivery rates itoring, on-site anesthesia coverage, and continuous pres- and increase TOLACs (Medical Leadership Council, ence of a surgeon. 1996). By 1988, ACOG strongly supported VBAC and had During this era of change, women were chosen for reduced the specifications for emergency preparedness. TOLAC who were likely to have spontaneous vaginal Noting that VBAC deliveries had lowered maternal and deliveries. The practitioners hovered near the patient to perinatal mortality rates, eliminated operative and post- make certain all was well. Only women with documented operative complications, and shortened the length of hos- low transverse uterine incisions were allowed to attempt pital stay, ACOG suggested that 50% to 80% of selected VBAC. Women were not chosen for VBAC if they had women who had low transverse uterine incisions were had other prior uterine surgery. Most patients were con- able to deliver vaginally. This ACOG committee opinion tinuously monitored with electronic fetal monitoring (1988) sanctioned ambulation in early labor, oxytocin according to the ACOG guidelines of 1982, 1988, and administration, use of epidural anesthesia, and TOLAC 1994. for all women with one or more previous cesarean births Expanding Use of VBAC. With the low incidence of if there were no contraindications such as previous classi- VBAC complications, practitioners became more confi- cal uterine incision. The specific 1982 recommendations dent. Questions arose as to who should be allowed to for emergency preparedness were replaced by a more gen- have a TOLAC. Could a woman with twins have a eral statement that patients should be delivered in hospi- TOLAC? Could a woman with a large baby have a tals with the capacity to handle obstetric emergencies, TOLAC? Could a woman attempting TOLAC be given including having a physician capable of performing a oxytocin? Could a woman attempting a trial of labor cesarean. At such a setting, a cesarean delivery could be have prostaglandins? Could a woman attempting a trial performed in 30 minutes from decision to incision. With of labor be given an epidural? The medical community this endorsement from ACOG, VBAC became increasing- thought it had answered all of these questions, and ly common. women were allowed to have prostaglandins, oxytocin, In its next statement on VBAC in 1994, ACOG and epidurals. Research indicated that it was safe to allow addressed concerns about uterine rupture. The incidence a woman with a multiple gestation to attempt VBAC of uterine rupture with VBAC was reported to be less (Kobelin, 2001). It was also reported that 70% of women than 1% of all attempted VBACs, and serious conse- were able to deliver infants larger than their previous quences could be minimized by appropriate intrapartum babies even after having had a previous cesarean for fail- surveillance. The most common signs of uterine rupture ure to progress (ACOG, 1988). were noted to be abrupt changes in fetal heart rate,

106 JOGNN Volume 33, Number 1 In 1981, the VBAC rate had been only 3%, so the rationale for VBAC, as costs of maternal and neonatal National Institutes of Health (NIH) and ACOG became complications, as well as malpractice costs, should be leaders in encouraging a change in practice. Third-party taken into consideration. Clark et al. (2000) likewise con- payers also found VBAC to be financially beneficial, as cluded that when neonatal care and malpractice costs the cost of a vaginal delivery was much less than a cesare- were included, it was unlikely that VBAC offered signifi- an delivery, and so they also encouraged VBAC and often cant cost savings over a repeat cesarean section. required TOLAC (ACOG, 1999a; Medical Leadership Selection criteria for candidates for VBAC and con- Council, 1996). Consequently, physicians at times felt traindications were listed. Concern was expressed about pressured to attempt TOLAC in clinically unsuitable continued expansion of those eligible for VBAC to patients and patients who did not want the procedure. include women with multiple previous cesarean deliveries, unknown uterine scars, breech presentations, twin gesta- Emerging Complications of tions, postterm pregnancies, and suspected macrosomia. Continued analysis was called for before these women VBAC in High-Risk Women could be routinely offered TOLAC. Oxytocin usage was With the great increase in VBAC rates and inclusion of condoned, but with the caution that higher doses might women previously thought to have contraindications to increase the risk of uterine rupture. There had been occa- TOLAC, some hospitals were not equipped to handle the emergencies that occurred. These hospitals lacked the necessary provisions for the physician to be available within the obstetric unit or for operating room personnel he risk of uterine rupture was approximately and anesthesia to be available within the hospital during T these TOLACs. When a uterine rupture occurred, it took 5.2 per 1,000 in women attempting a trial too long to deliver the baby by cesarean, which resulted in fetal or neonatal demise or long-term sequelae. Leung, of labor after cesarean whose labors Leung, and Paul (1993) found that in women with an unknown uterine scar, neonatal morbidity was significant were not induced. The risk increased when greater than 18 minutes elapsed between the onset of prolonged decelerations and delivery. Many hospitals with induced labor. could not meet the 30-minute decision-to-incision param- eter and therefore could not deliver a patient in less than 18 minutes if a uterine rupture occurred. Other maternal and fetal complications also occurred. sional reports of uterine rupture with prostaglandin Hysterectomy sometimes was needed. Some women preparations. ACOG also recommended that after a uter- encountered long and difficult labors in their attempt at ine rupture, the next delivery should be by cesarean, as VBAC. Some of these women had gynecologic problems soon as the baby was mature. later in life that included urinary and fecal incontinence, There has been some concern that the type of uterine pelvic pain, sexual dysfunction, and pelvic prolapse closure during cesarean repair could increase the rate of (Devine, Ostergard, & Noblett, 1999; Forsnes, Browning, uterine rupture, but Flamm (2001) stated that single-layer & Gherman, 2000; Kattan, 1997; Webb, Gilson, & Gor- closure of the uterus was not associated with an increase don, 2000). Perinatal morbidity attributed to TOLAC in uterine rupture in his facility. The amount of time included cerebral palsy and fetal or neonatal death. These between the previous delivery by cesarean and the adverse events led to malpractice suits that prompted TOLAC had also been thought to contribute to the uter- ACOG to reevaluate its recommendations for cesarean ine rupture. Esposito, Menihan, and Malee (2000) found (ACOG, 1999a). that when the interpregnancy interval was less than 6 ACOG published additional bulletins on vaginal birth months, it significantly increased the uterine scar failure, after previous cesarean delivery (1999a), and on induc- and the longer the interpregnancy interval, the lower the tion and misoprostol (1999b, 1999c, 2000). External ver- likelihood of uterine scar failure during subsequent labor. sion was added to the list of procedures deemed safe for ACOG’s (1999a) recommendations included continu- women after previous cesarean. It was also concluded ous fetal monitoring and the presence of personnel who that women were more likely to try VBAC if epidural were familiar with VBAC complications, including nonre- anesthesia was offered and that it did not mask the pain assuring fetal monitoring tracings and signs of inadequate of uterine rupture. However, some cautions were intro- labor progress. TOLAC was specifically contraindicated duced. Misoprostol was not recommended for TOLAC or in situations in which there was an inability to perform for women with previous uterine surgery. It was noted emergency cesarean because of unavailable surgeon, anes- that reduction of hospital costs was no longer a simple thesia, sufficient staff, or facility. In a later statewide

January/February 2004 JOGNN 107 study in Ohio (Lavin, DiPasquale, Crane, & Stewart, Knowing the Signs of Uterine Rupture 2002), it was found that many Level I and II hospitals Given the potential lethal complications of uterine rup- provided less than optimal staffing for women undergo- ture that include maternal morbidity such as hysterecto- ing TOLAC. my and neurological impairment in infants or even perinatal death, obstetric staff must have appropriate Concern About Oxytocin Induction in TOLAC equipment and personnel, including a surgeon, anesthe- Leung, Farmer, Leung, Medearis, and Paul (1993) had sia, and surgery personnel immediately available to deal found years earlier that high doses of oxytocin in TOLAC with emergencies. Some authors have defined immediate- were associated with uterine rupture. Lydon-Rochelle, ly available as remaining in the hospital during a TOLAC Holt, Easterling, and Martin (2001) reported that the (Blanchette et al., 2001). risk of uterine rupture was approximately 5.2 per 1,000 Obstetric nurses and physicians must also understand TOLACs in women who were not induced, but the risk the signs and symptoms of uterine rupture. These symp- increased to 7.7 per 1,000 when women were induced toms may include abdominal, shoulder, or back pain. The with oxytocin, and to 24.5 per 1,000 when women also pain is usually not masked by an epidural; patients have were given prostaglandins, particularly misoprostol. The reported pain even with an epidural that had previously International Childbirth Education Association (ICEA), been giving them pain relief. Vaginal bleeding may also be as early as 1997, discouraged the use of oxytocin in a symptom of uterine rupture, although it does not seem TOLAC and subsequently criticized ACOG for not to be common. Occult bleeding may cause hypovolemia expressing greater caution about using oxytocin after the and be manifested by abnormal vital signs. Lydon-Rochelle report. Lieberman (2001) likewise indi- Signs of uterine rupture exhibited by the fetus include cated that there should be some concern about using oxy- the movement of the fetal presenting part to a higher sta- tocin for a TOLAC. Blanchette, Blanchette, McCabe, and tion. This occurs when the fetus moves up into the Vincent (2001) found that 11 of the 12 uterine ruptures abdomen from the uterus after uterine rupture. At times, that they reviewed had occurred during induction with uterine activity on the fetal monitor demonstrates oxytocin, and Sims, Newman, and Hulsey (2001) found tachysystole. There could be cessation of uterine activity, that induction significantly reduced the rate of successful but this may be a later sign. The cessation of uterine activ- vaginal delivery and increased the risk of serious maternal ity may come after the tachysystole or may occur inde- morbidity. pendently. However, many authors have stated that usu- Not all reports were negative. Kobelin (2001) reported ally there is no disruption of the uterine activity that it was safe to give oxytocin to TOLAC patients, (Blanchette et al., 2001; Flamm, 1992; Menihan, 1998; although high doses of oxytocin could increase the risk of Ramsey, Johnston, Welter, & Ogburn, 2000). uterine rupture. Flamm (2001) reviewed the literature and found that oxytocin was safe to use for TOLAC, but cautioned that because uterine rupture was associated with oxytocin without a uterine scar that it would be wise to he most significant sign of uterine rupture is exercise caution when administering oxytocin with a T scarred uterus. Hamilton, Bujold, McNamara, Gauthier, change in the fetal heart rate tracing. and Platt (2001), reviewing cases of symptomatic uterine rupture, suggested that it was not induction itself but continued use of oxytocin with unidentified dystocia that was associated with uterine rupture. They concluded that in The most significant sign of uterine rupture described cases in which cervical dilation was arrested for 2 hours in the literature is a change in the fetal heart rate tracing or more, cesarean delivery would have prevented 42.1% (Blanchette et al., 2001; Cowan, Kinch, Ellis, & Ander- of uterine ruptures. son, 1994; Kieser, 2002; Leung, Farmer, et al., 1993; In 2002, ACOG published another committee opinion Menihan, 1998), which was described as early as 1992 by that discouraged the use of prostaglandins for cervical Flamm. Several authors have indicated that when uterine ripening or induction of labor. This opinion reiterated rupture occurs, variable decelerations are frequently seen, that misoprostol should not be used in VBAC patients but or they have reported cases of variable decelerations fol- noted that VBACs could continue under proper circum- lowed by bradycardia (Ramsey et al., 2000; Webb et al., stances and with appropriate safeguards, as described in 2000). However, others have indicated that bradycardia the 1999a practice bulletin. ACOG continues to support can occur without preceding decelerations (Bennett, the use of oxytocin for TOLACs. 1997; Flamm, 2001; Menihan, 1999). Others have indicated that late decelerations and/or variable decelerations

108 JOGNN Volume 33, Number 1 TABLE 1 Clinical Presentations of Eight Cases of Ruptured Uterus

Case 123 4 5678 Prostaglandins Misoprostol Prostaglandin Cervidil None None None None Misoprostol 50 mcg × 2 gel 50 mcg × 1 Pitocin No Yes Yes No Yes Yes Yes Yes Epidural Yes Yes Yes Yes Yes No Yes Yes N&V None No None Yes No No Yes Yes Maternal Stable Stable Blood pressure Blood pressure Stable Not Pulse Pulse vital signs decreased decreased assessed increased increased Pulse increased Pulse increased Vaginal bleeding None None None Bloody No No No No amniotic fluid Unusual pain No Shoulder pain Yes No Pelvic pain No Yes Pain 1-2, epidural increased EFM US/Toco FSE/Toco US/Toco FSE/Toco FSE/Toco FSE/Toco US/Toco US/IUPC Decelerations Variable Variable, late, Variable Variable Variable Variablea Variable Lateb prolonged Terminal Yes Yes Yes Yes Yes Yesd Yes No Bradycardia Contractions Hyper- Hyper- Slowed, then Ceasedc Toco Ceased Continued Continued stimulation, stimulation, hyper- discontinued then ceased then mild stimulation contractions, then ceased Minutes of 58 69 90 72 129 55 23 140 nonreassuring tracing Minutes of 49 15 13 21 15 34 31 0 bradycardia Second-stage No Yes Yes Yes Yes Yes Yes No rupture MD in hospital No Yes No Yes No No No Yes Apgars 1”–2 1”-1 1”-1 1”-1 1”-1 1”-0 1”-0 1”-0 5”–3 5”-2 5”-4 5”-2 5”-1 5”-0 5”-4 5”-0 10”-5 10”-4 10”-5 10”–2 10”–5 10”–0 10”-4 Outcome Cerebral Cerebral Cerebral Death in Cerebral Stillborn Cerebral Death in palsy palsy palsy NICU palsy palsy NICU

aSee Figure 1a. bSee Figures 2a and 2b. cSee Figure 3b. dSee Figure 1b. precede bradycardia (Leung, Farmer, et al., 1993; Meni- they are consistent and severe and do not respond to nurs- han, 1998). ing intervention or are severe enough that amnioinfusion Flamm (2001) remarked that variable decelerations are is considered, it would be more prudent to consider seen frequently in the second stage of labor, but when cesarean section instead. Flamm also cautioned that a

January/February 2004 JOGNN 109 FIGURES 1A AND 1B Two segments of fetal monitor tracings from case 6, showing variable decelerations at 1900 (a) progressing to bradycardia at 1950 (b).

FIGURES 2A AND 2B Two segments of fetal monitor tracings from case 8, showing late decelerations at two time points in over 2 hours of oxtytocin induction, with declining heart rate variability (b). deceleration of the fetal heart rate to 60-70 beats per Three of the babies died: one was stillborn and two died minute or less for more than a few minutes that does not in the neonatal intensive-care unit (NICU). The other five return to baseline requires rapid intervention. babies had neurological sequelae, including cerebral palsy (see Table 1). Fetal Heart Rate Tracings During EFM Patterns Uterine Rupture: Case Reviews The fetal monitoring tracings from these eight cases To promote safety for patients and in nursing practice, supported the evidence cited above that a nonreassuring nurses can learn from review of fetal heart rate patterns fetal monitoring tracing is the first sign of uterine rupture. during uterine rupture. Eight cases of uterine rupture All were nonreassuring. There were variable, late, and were reviewed to identify the symptoms of uterine rup- bradycardic patterns, and the most frequent pattern was ture. Seven were TOLACs and one occurred in a multi- that of variable decelerations (see Figure 1a) progressing gravida during labor without a previous cesarean section. to bradycardia (see Figure 1b). It is thought that the

110 JOGNN Volume 33, Number 1 FIGURES 3A AND 3B Two segments of fetal monitor tracings from case 4, showing regular uterine contractions at 4:20 (a) progressing to cessation of uterine contractions by 5:09 (b). umbilical cord extrudes through the rupture and causes have been especially watchful for dystocia (Hamil- cord compression, producing variable decelerations. One ton et al., 2001). tracing had variable, late, and prolonged decelerations before bradycardia. Six of the eight ruptures occurred in Maternal Symptoms and Obstetric Interventions the second stage of labor. Many of the practitioners Six of the eight patients received oxytocin, and four thought that since variable decelerations were common in received prostaglandins; two of these received 50 mcg the second stage of labor, they were not a symptom of misoprostol. Three of the four patients who received uterine rupture. This delayed the recognition of uterine prostaglandins also received oxytocin. It is of interest that rupture in most of the cases. six of the eight uterine ruptures in this series occurred in The tracing from the multigravida without previous the second stage of labor, and of those, two had vacuum cesarean showed late decelerations (see Figure 2a and 2b) attempts and one had a forceps attempt. and was the only one that did not demonstrate bradycar- All but one of the patients had epidurals. The patient dia, although variability was absent by the end of the without an epidural did not experience increased pain, labor. Late decelerations reflect uteroplacental insufficien- and two of the patients with epidurals did not have cy that is thought to be caused by placental interference at increased pain. It was documented that one of the patients the rupture site. In this case, the placenta delivered with (case 8) had a pain level of 1-2; however, at that time her the infant. epidural medication dose was increased. The other In four cases, a fetal scalp electrode was not applied, so patients had pain in different places: One had shoulder the variability could not be completely assessed. Although pain, two had increased uterine pain, and one had pelvic time of onset was unknown, seven of the tracings demon- pain. It is interesting that the patient without an epidural strated minimal to absent variability along with decelera- did not complain of increased pain, yet some of the tions. The eighth tracing had average variability with sec- patients with epidurals were still able to feel pain. tions of saltatory baseline. Although TOLAC patients were not given epidurals in The uterine activity was not consistent. Normal uterine early years because it was thought the epidurals would activity continued in two of the cases. In two of the cases, mask the pain of uterine rupture, these cases reflect that uterine hyperstimulation was seen, and then contractions epidurals are now freely administered. stopped. In two other cases, the uterine activity simply Other commonly anticipated symptoms of uterine rup- ceased (see Figure 3a and 3b). In a fifth, the uterine activ- ture were seen only inconsistently in these cases. Only two ity slowed down, followed by hyperstimulation. In one patients complained of nausea and vomiting. Only one case, the tocotransducer was removed, so uterine activity had bleeding, in the form of bloody amniotic fluid. Two is unknown. In hindsight, because six of these eight patients had the expected decrease in blood pressure and patients were receiving oxytocin, practitioners should increase in pulse, and two had only an increased pulse.

January/February 2004 JOGNN 111 response. The nurse or physician may only have a few sec- TABLE 2 onds to jot down information. The fetal monitoring trac- ACOG 2002 Recommendations for Safe VBAC ing is a good place to do this, as it automatically keeps track of the time that events occurred. In most of the Signed informed consent with benefits and risks listed charts and tracings reviewed from these cases, there was very little information about what was happening with Appropriate patients chosen by medical personnel for VBAC Appropriate method of initiation of labor, that is, spontaneous or oxytocin induction Surgeon in the hospital Anesthesia provider in the hospital The woman considering induction of labor Operating room personnel in the hospital Sufficient blood available in the hospital after previous cesarean birth should be Ability to perform cesarean delivery in < 18 minutes Practitioner at bedside who can interpret nonreassuring fetal informed that there is a higher risk of uterine monitoring tracings Practitioner at bedside who can recognize signs and symp- rupture with an induction than toms of uterine rupture with spontaneous labor. Source: ACOG (2002).

Three women had no change in vital signs. There was no the patient. In case 3, the physician noted the indication vital sign assessment for one of the patients. for the cesarean delivery as failed forceps delivery, and Seven of the eight cases occurred in community hospi- there was no indication that the patient was being treated tals that were unable to provide anesthesia, sufficient for an emergency. Documentation assists with communi- staff, or a surgeon capable of performing an immediate cation and maintains a record of emergency situations. cesarean. None of them met the 30-minute decision-to- This is important for dissemination of accurate informa- incision criterion, let alone the 18-minute time limit sug- tion to other care providers such as the intensive-care unit gested by Leung, Leung, et al. (1993). Table 1 outlines the (ICU) or the NICU. length of time that elapsed from the onset of an ominous tracing until delivery. However, in all the cases, a nonre- Consent assuring tracing preceded the ominous tracing. In all but Fully informed consent also is essential for the woman one of the cases, the surgeon was not in the hospital, who wants to have a trial of labor after a cesarean sec- which prolonged the time to surgical delivery. These cases tion. The patient must be advised regarding the risks as demonstrate the importance of vigilant assessment for well as the benefits of TOLAC. She must understand the nonreassuring fetal monitor tracings, the most consistent ramifications of uterine rupture, even though the risk is and significant symptom of uterine rupture. small. She should also be informed that there is a higher risk of uterine rupture with an induction than with spon- Nursing Implications taneous labor. This consent should be in writing and should be signed These case studies emphasize the importance of the in the physician’s office before admission for the actual recommendations made by ACOG and others to keep the delivery. The benefits and risks should be clearly delineat- patient, the nurse, and the physician safe. These recom- ed on the consent form. A copy should be sent with the mendations are listed in Table 2. When these recommen- woman’s prenatal records to the hospital. When the dations can be met, TOLAC can be performed in an envi- patient is admitted to the hospital, the nurse must ensure ronment that will be able to handle the acute emergency that informed consent has been provided, by asking the of uterine rupture. patient if she understands the procedure and the benefits Documentation and risks of the TOLAC, including the risk of uterine rupture. If she has not been given this information or does Record-keeping is an important component of safe not understand, the procedure with its risks and benefits patient care. When an emergency occurs, it is imperative should be explained to the patient. If the patient still has to take care of the patient, but also to keep track of the questions, the physician should be contacted to discuss plan of care, interventions, their timing, and the patient’s these issues with the patient. To optimize patients’ under-

112 JOGNN Volume 33, Number 1 standing of the procedures and risks, a pamphlet may be these cases, assembling the team when the ominous decel- written by the nursing and medical staff and given to the erations occurred before the terminal bradycardia would patient in the office by the physician when he or she have saved valuable time in getting the baby delivered. In explains the procedure and the consent is signed. This most cases, the fetus would have been delivered before the preapproved pamphlet could also be given to hospitalized terminal bradycardia. patients who have not received the full explanation of the procedure and its risks. Readiness for Emergency Even when the patient is in labor, she may change her According to ACOG criteria for safe TOLAC, the mind and decide to have a cesarean birth. If the patient physician, anesthesia provider, and operating room team reports that she now wants a cesarean birth, the physician must be immediately available, but ACOG has not and hospital no longer have consent for a VBAC, and the defined immediately available. If we define immediately TOLAC should not be continued. Continuing the available based on the study by Leung, Leung, et al. TOLAC after the patient has withdrawn her consent puts (1993), the fetus should be able to be removed from the the nurses, physicians, and hospital at risk for a lawsuit, ruptured uterus in less than 18 minutes to avoid brain even if no harm to the fetus or infant occurs. damage. Hospitals should develop policies to identify what immediately available means in their settings. Surveillance In many hospitals today, the decision has been made A nonreassuring fetal monitor tracing in a TOLAC that the physician, anesthesia provider, and operating patient should alert the caregivers to the possibility of room team need to be in the hospital at all times during a uterine rupture. Based on these cases and the literature TOLAC. Some hospitals have decided not to allow cited above, any nonreassuring fetal monitor tracing TOLACs because they cannot meet these criteria. In some should be suspect. Therefore, an expert in reading fetal cases, physicians will not stay at the hospital, and the monitor tracings must be constantly available to evaluate hospital does not have residents available to initiate the the tracings. If there is any question at all of a nonreas- surgery. Some hospitals do not have 24-hour in-hospi- suring tracing, the nurse should apply a fetal scalp elec- tal anesthesia coverage or nurses available at all times to trode or have one applied. The fetal scalp electrode will scrub and circulate. Allowing TOLACs when these serv- initiate a clearer, more accurate tracing for ongoing and ices are not available places the mother, fetus, and hospi- later evaluation. tal at risk. All of the tracings in the cases reviewed had late, vari- Personnel who are experts at reading fetal monitoring able, and/or prolonged decelerations with minimal to tracings and can quickly assemble the operative team are absent variability before the terminal bradycardia. The the key to swift deliveries when emergencies occur. most common pattern before the terminal bradycardia Appropriate selection of patients who can labor in a set- was variable decelerations. Many of the cesarean deliver- ting where the surgeon and anesthesia and operating ies were delayed because the nurses and/or the physicians room personnel are present can make the experience of thought that the variable decelerations reflected those vaginal birth after cesarean safer for all involved. commonly occurring in the second stage of labor. In all of the tracings, loss of variability along with these REFERENCES decelerations reflected an ominous fetal heart rate tracing before the terminal bradycardia. Even in a low-risk labor, American College of Obstetricians and Gynecologists. (1982). the combination of decelerations and minimal to absent Guidelines for vaginal delivery after a previous cesarean variability is ominous, and the fetus should be delivered. birth (Committee on Obstetrics: Maternal and Fetal Med- Terminal bradycardia should be considered an emergency icine). Washington, DC: Author. in patients who are undergoing a TOLAC, and the nurse American College of Obstetricians and Gynecologists. (1988). Guidelines for vaginal delivery after a previous cesarean should assemble the team for an emergency delivery. birth (Committee opinion 64). Washington, DC: Author. However, in all of the tracings, the terminal bradycardia American College of Obstetricians and Gynecologists. (1994). was preceded by decelerations and minimal to absent Guidelines for vaginal delivery after a previous cesarean variability in those cases where it could be assessed. Vari- birth (Committee opinion 143, replaces #64 October ability may have been absent in all of the tracings, but a 1988). Washington, DC: Author. fetal scalp electrode was not utilized in all of the tracings American College of Obstetricians and Gynecologists. (1999a). to assess the exact absence of variability. Any delay by the Vaginal birth after previous cesarean delivery (ACOG nurse in the process of identifying the nonreassuring trac- practice bulletin 5). Washington, DC: Author. ing or assembling the team could mean damage for the American College of Obstetricians and Gynecologists. (1999b). mother and/or the fetus and a lawsuit for the hospital. In Induction of labor (ACOG practice bulletin 10). Wash- ington, DC: Author.

January/February 2004 JOGNN 113 American College of Obstetricians and Gynecologists. (1999c). Kattan, S. A. (1997). Maternal urological injuries associated Induction of labor with misoprostol (Committee opinion with vaginal deliveries: Change of pattern. International 228). Washington, DC: Author. Urology and Nephrology, 29, 155-161. American College of Obstetricians and Gynecologists. (2000). Kieser, K. E. (2002). A 10 year population-based study of uter- Response to Searle’s drug warning on misoprostol (Com- ine rupture. Obstetrics and Gynecology, 100, 749-753. mittee opinion 248). Washington, DC: Author. Kobelin, C. G. (2001). Intrapartum management of vaginal American College of Obstetricians and Gynecologists. (2002). birth after cesarean section. Clinical Obstetrics and Gyne- Induction of labor for vaginal birth after cesarean delivery cology, 44, 588-593. (Committee opinion 271). Washington, DC: Author. Lavin, J. P. Jr., DiPasquale, L., Crane, S., & Stewart, J. Jr. Bennett, B. B. (1997). Uterine rupture during induction at term (2002). A state-wide assessment of the obstetric, anesthe- with intravaginal misoprostol. Obstetrics and Gynecolo- sia, and operative team personnel who are available to gy, 89, 832-833. manage the labors and deliveries and to treat the compli- Blanchette, H., Blanchette, M., McCabe, J., & Vincent, S. cations of women who attempt vaginal birth after cesare- (2001). Is vaginal birth after cesarean safe? Experience at an delivery. American Journal of Obstetrics and Gynecol- a community hospital. American Journal of Obstetrics ogy, 187, 611-614. and Gynecology, 184, 1478-1487. Leung, A. S., Farmer, R. M., Leung, E. K., Medearis, A. L., & Carr, C. A., Burkhardt, P., & Avery, M. (2002). Vaginal birth Paul, R. H. (1993). Risk factors associated with uterine after cesarean birth: A national survey of US midwifery rupture during trial of labor after cesarean delivery: A practice. Journal of Midwifery and Women’s Health, 47, case-control study. American Journal of Obstetrics and 347-352. Gynecology, 168, 1358-1363. Clark, S. L., Scott, J. R., Porter, T. F., Schlappy, D. A., McClel- Leung, A., Leung, E., & Paul, R. (1993). Uterine rupture after lan, F., & Burton, D. A. (2000). Is vaginal birth after previous cesarean delivery: Maternal and fetal conse- cesarean less expensive than repeat cesarean section? quences. American Journal of Obstetrics and Gynecology, American Journal of Obstetrics and Gynecology, 182, 169, 945-950. 599-602. Lieberman, E. (2001). Risk factors for uterine rupture during a Cowan, R. K., Kinch, R. A. H., Ellis, B., & Anderson, R. (1994). trial of labor after cesarean. Clinical Obstetrics and Gyne- Trial of labor following cesarean delivery. Obstetrics and cology, 44, 609-621. Gynecology, 83, 933-936. Lydon-Rochelle, M., Holt, V. L., Easterling, T. R., & Martin, D. P. Cragin, E. B. (1916). Conservatism in obstetrics. New York (2001). Risk of uterine rupture during labor among Medical Journal, 104, 1-3. women with prior cesarean delivery. New England Jour- Devine, J. B., Ostergard, D., & Noblett, K. (1999). Long-term nal of Medicine, 345, 3-8. complications of the second stage of labor. Contemporary Medical Leadership Council. (1996). Coming to term: Innova- OB/GYN, 44(6), 846-848. tions in safely reducing cesarean rates. Washington, DC: Esposito, M. A., Menihan, C. A., & Malee, M. P. (2000). Asso- The Advisory Board Co. ciation of interpregnancy interval with uterine scar failure Menihan, C. A. (1998). Uterine rupture in women attempting a in labor: A case-control study. American Journal of vaginal birth following prior cesarean birth. Journal of Obstetrics and Gynecology, 183, 1180-1183. Perinatology, 18(6), 440-443. Flamm, B. L. (1992). Roundtable discussion: Should the elec- Menihan, C. A. (1999). The effects of uterine rupture on fetal tronic fetal monitor always be used for women in labor heart rate patterns. Journal of Nurse-Midwifery, 44(1), who are having a vaginal birth after a previous cesarean 40-46. section? Birth, 19, 31-34. Ramsey, P. S., Johnston, B. W., Welter, V. E., & Ogburn, P. L. Jr. Flamm, B. L. (1997). Once a cesarean, always a controversy. (2000). Artifactual fetal electrocardiographic detection Obstetrics and Gynecology, 90, 312-315. using internal monitoring following intrapartum fetal Flamm, B. L. (2001). Vaginal birth after cesarean: Reducing demise during VBAC trial. Journal of Maternal-Fetal medical and legal risks. Clinical Obstetrics and Gynecol- Medicine, 9, 360-361. ogy, 44, 622-629. Sewell, J. (1993). Cesarean section: A brief history. Washington, Forsnes, E. V., Browning, J. E., & Gherman, R. B. (2000). Blad- DC: The American College of Obstetricians and Gynecol- der rupture associated with uterine rupture. Journal of ogists in cooperation with the National Library of Medi- Reproductive Medicine, 345, 240-242. cine. Retrieved Sept. 16, 2003, from http://www.nlm.nih. Gibbs, C. E. (1980). Planned vaginal delivery following cesare- gov/exhibition/cesarean/cesarean_1.html an section. Clinical Obstetrics and Gynecology, 23, 507- Sims, E. J., Newman, R. B., & Hulsey, T. C. (2001). Vaginal 515. birth after cesarean: To induce or not to induce. American Hamilton, E. F., Bujold, E., McNamara, H., Gauthier, R., & Journal of Obstetrics and Gynecology, 184, 1122-1124. Platt, R. W. (2001). Dystocia among women with symp- Webb, J. C., Gilson, G., & Gordon, L. (2000). Late second stage tomatic uterine rupture. American Journal of Obstetrics rupture of the uterus and bladder with vaginal birth after and Gynecology, 184, 620-624. cesarean section: A case report and review of the litera- International Childbirth Education Association. (1997). Posi- ture. Journal of Maternal-Fetal Medicine, 9, 362-365. tion statement: Cesarean birth and VBAC. International Journal of Childbirth Education, 12(4), 38-41.

114 JOGNN Volume 33, Number 1 Joan Drukker Dauphinee, RNC, MS, is a unit-based educator Address for correspondence: Joan Drukker Dauphinee, RNC, for Women’s and Surgical Services, Orlando Regional South MS, Women’s and Surgical Services, Orlando Regional South Seminole Hospital, Longwood, FL. Seminole Hospital, 55 West State Road 434, Longwood, FL 32750. E-mail: [email protected].

January/February 2004 JOGNN 115 CLINICAL ISSUES

Malpractice and the Neonatal Intensive-Care Nurse M. Terese Verklan

Perinatal nursing has become a specialty vul- and obstetric and neonatal health care providers nerable to litigation, due to parents’ high expectations decrease tension, encourage trust, and reduce the of health care providers’ ability to monitor for adverse number of malpractice claims. events and intervene appropriately to prevent harm. The primary cause of all patient injuries is the When a neonate is injured during the perinatal peri- failure to follow the accepted standard of nursing od, a frequent response is to look for someone to care, which is composed of the five steps of the nurs- blame. Neonatal nursing is considered a specialty ing process: assessment, diagnosis, planning, imple- area, requiring specialized knowledge and training. mentation, and evaluation. Because the nursing By adhering to recognized and accepted internal and process is the foundation for nursing education, external policies, neonatal nurses will uphold the stan- practice, and documentation, plaintiff attorneys will dard of care set for their area of practice and avoid use it to identify deviations from the standard of legal liability. JOGNN, 33, 116-123; 2004. DOI: care, interpret the medical record, and formulate 10.1177/0884217503 questions when deposing the nurse defendant (Verk- Keywords: Hypoglycemia—Liability—Malprac- lan, 1999). This article will review the standard of tice—Neonatal nursing—Resuscitation—Standard of care, scope of practice, malpractice, common causes care of liability, and documentation issues as they affect neonatal nursing practice. Accepted: July 2003 The Standard of Care The birth of a baby is not always associated with joy and happiness. Parents and health care providers Regardless of geographical location, the same almost instinctively realize when a neonate is experi- standard of care is expected to be applied by all encing difficulties in the transition to extrauterine neonatal nurses. Neonatal nursing is a specialty of life. Families feel a loss of control when their baby is maternal-child nursing, and the neonatal nurse must quickly taken to the busy, highly technological envi- be cognizant of the professional practice standards ronment of a neonatal intensive-care unit (NICU) for that specialty. A Louisiana court (King v. Depart- and they are barraged with treatment options and ment of Health & Hospitals, 1999) stated: urgent requests for treatment decisions in an unfa- A nurse who practices her profession in a partic- miliar setting with unfamiliar people. A lawsuit ular specialty owes to her patients the duty of often is brought simply because parents have a need possessing the degree of knowledge or skill ordi- to know information they feel is being kept from narily possessed by members of her profession them. actively practicing in such a specialty under simi- When resuscitation is conducted with a calm, lar circumstances. It is the nurse’s duty to exercise organized team approach, parental and professional the degree of skill ordinarily employed, under satisfaction with the outcome may be higher. Open similar circumstances, by members of the nursing and honest lines of communication between parents

116 JOGNN Volume 33, Number 1 profession in good standing who practice their profes- To assist in establishing the standard of care, the attor- sion in the same specialty and to use reasonable care ney will use five types of evidence. State and federal regu- and diligence, along with his/her best judgment, in the lations will be reviewed because they define the standard application of his/her skill to the case. and delineate the scope of practice. Each state has a nurse practice act as mandated by its legislature, which It is important to note that the issue is not excellence in describes the standards in a language broad enough to practice and high quality of care. The standard of care is permit flexibility in implementation. Standards are also established by defining what a reasonable and prudent promulgated through Joint Commission for Accreditation nurse would have done given the same conditions. A rea- of Healthcare Organizations (JCAHO), the department of sonable and prudent nurse is one who has a similar edu- health, the Health Care Financing Administration, and cational background and level of experience. It is expect- other regulatory agencies (Iyer, 2001a). ed that professional nurses are competent and current with respect to the standards of care and practice for their specialty as well as their profession (American Nurses Association, 1998). To assist in establishing the standard of care, the attorney will use five types of evidence: state and federal regulations, institutional policies and Because neonatal nursing is a specialty of procedures, expert witness testimony, standards maternal-child nursing, the neonatal nurse must of professional organizations, and current be cognizant of the professional practice professional literature. standards for that specialty.

A second method of establishing the standard of care is to identify an expert witness who can articulate the devi- The Mississippi Board of Nursing charged a registered ations or adherence to the customary standard of care at nurse with abuse of neonatal patients. It was noted that the time of the incident. An expert witness neonatal nurse her clinical practices included holding a baby around its is one who possesses special knowledge, clinical skill, and neck with only one hand, carrying babies by holding them experience in the care of neonates and has been retained under their axillae, carrying naked babies around the by the plaintiff or defense attorney for the purpose of NICU, and washing them in the unit’s sinks. It was also evaluating whether the standard of care has been met. alleged that she endangered the babies by rapidly flipping Institutional policies, procedures, and protocols detail the levers on the incubators when attempting to stimulate the internal standards of the organization. Because they them. The Board found her guilty on all charges and may be the best source for identifying deviations in care, revoked her license. The nurse appealed to the Supreme often they are among the first materials requested by the Court of Mississippi. The Court held that she acted in plaintiff attorney. The policy outlines the purpose for the reckless disregard of the health and safety of the neonates procedure as well as specifying the steps in the procedure by removing them from incubators and holding them itself. Adherence to institutional standards may offer pro- with her one hand around the babies’ necks, holding them tections against claims of malpractice. under the axillae and allowing their bodies to dangle was The parents of baby Leigh Ann alleged that the nursing negligent, removing them naked from incubators to bathe staff were negligent in the monitoring of their baby while and weigh them in different areas of the NICU compro- in the well-baby nursery, as the nurses left the nursery mised thermoregulation and exposed them to risks of unattended when taking other babies out to their moth- infection, and overstimulation increased the risk of intra- ers. The nurse found the 1-day-old neonate in cardiopul- ventricular hemorrhage (Tammelleo, 1998). monary arrest, face down in the bassinet. Resuscitation Although no actual damage was documented to occur efforts were immediately instituted, but Baby Leigh Ann to any specific baby, the nurse’s actions were outside the sustained severe brain damage and eventually succumbed practice realm of what would be expected from a reason- from the hypoxic sequelae. The nurses testified that the able, prudent neonatal nurse. Neonatal nurses who are nursery was divided into two sections and that they advocates for their patients would consider these prac- would circulate between the two sections to observe each tices abhorrent. neonate at 10- to 15-minute intervals, according to their

January/February 2004 JOGNN 117 hospital policy. The plaintiffs argued that this routine The two most common roles in all three levels of meant that their baby was left unobserved for at least 6 to neonatal care are the bedside neonatal nurse and the 8 minutes, which was sufficient time to sustain permanent advanced practice nurse. brain damage. A jury determined that the hospital did not A neonatal nurse is a professional nurse who provides breach its duty and was not negligent, a decision that was skilled nursing care for low-risk, high-risk, and criti- affirmed upon appeal. cally ill neonates, and their families. The neonatal The central issue of the case was whether or not it was nurse has specialized knowledge and develops and an acceptable standard of practice to individually observe maintains clinical competence through standardized each baby at 10- to 15-minute intervals and not that the practice and continuing education. . . . In addition to baby was injured while in the hospital’s care. Testimony providing basic neonatal care, neonatal nurses may from both parties supported that the hospital policy was focus on one or more areas of expertise, such as inten- within the known and accepted standard of care sive or critical neonatal care, transport, lactation, grief, (Monarch, 2002; Tammelleo, 1989). The practice of leav- extracorporeal membrane oxygenation or developing babies unattended carries inherent risk and is not an mental care. (AWHONN & NANN, 1997, pp. 8-9) optimal situation. However, because the nurses followed their accepted hospital policy, even though the baby suf- Certification, the recognition by a nongovernmental fered harm, they were not held negligent, because they body that the nurse has demonstrated specialized knowl- met the standard of care. edge and competence in a specific area, may be obtained The American Nurses Association (1998) has devel- through the National Certification Corporation (NCC) oped standards that use measurable criteria to define pro- for low- and high-risk neonatal nursing. The American fessional nursing practice. Specialty organizations, such Association of Critical Care Nurses Certification Corpo- as the National Association of Neonatal Nurses (NANN) ration certifies NICU nurses as critical care registered and the Association of Women’s Health, Obstetric and nurses (CCRNs). Neonatal Nurses (AWHONN), have adopted these stan- The advanced practice nurse (APN) is a professional dards in the form of recommendations and practice state- registered nurse who has obtained advanced education in ments applicable to the care of the neonate. For example, the field of neonatal nursing. The APN may provide direct AWHONN published Standards for Professional Nursing patient care, staff or patient education, or act as a neona- Practice in the Care of Women and Newborns (2003). tal case manager. “The neonatal nurse practitioner (NNP) Examination of the professional literature, textbooks, is a professional registered nurse with clinical practice in case reports, and articles also may be used to establish the neonatal nursing who has received formal education with standard of care. These documents focus on the state of supervised clinical practice in the management of sick the science, clinical nursing care strategies, and manage- neonates and their families” (AWHONN & NANN, ment issues common to the time of the alleged occurrence. 1997, p. 9). The NNP manages a caseload of neonates Research articles have assumed increased importance over using the nursing process, a medical management focus the past few years as the concept of evidence-based prac- that reflects the nurse practice act, and institutional guide- tice has gained widespread professional significance. lines in collaboration with and under the supervision of a physician (Verklan, 2001). The National Certification Scope of Practice Corporation, the body that provides certification for NNPs, has required a minimum preparation of a master’s The concern related to scope of practice is whether the degree since 2000. It is not unusual for the NNP to have nurse is legally performing within or outside the scope of an independent practice. a nursing license to practice. In the arena of high-risk In states with broad statutory regulations, regulators neonatal nursing, which is a subspecialty area of mater- and courts will evaluate whether APNs are legally nal-child nursing, components of medical and nursing allowed to carry out specific functions. If the state does practice have been blended and the boundaries between not recognize those duties to be within the scope of nurs- them may become blurred. High-risk neonatal nurses ing practice, the NNP may be charged with practicing commonly intubate infants, insert central intravenous medicine without a license (Verklan, 2001). catheters, and lead resuscitation teams, often ordering Another advanced practice role is the neonatal clinical emergency medications based upon practice protocols nurse specialist (CNS), a “professional registered nurse (Verklan, 2001). The nurse will encounter liability when with a master’s degree in nursing who, through study and assuming independent care functions that are solely with- supervised practice at the graduate level, is an expert in in the purview of the physician, not specified in standing the theory and practice of neonatal care. The CNS pro- orders, or are not recognized as legitimate nursing respon- vides continuity of care for high-risk neonates/infants and sibilities by either the nurse practice act or relevant pro- their families through direct patient care and nursing case fessional organizations (Verklan, 2001). management” (AWHONN & NANN, 1997, p. 9). The

118 JOGNN Volume 33, Number 1 CNS also may function as a consultant for other health the nurse caused harm to the patient due to negligent care providers, as an expert clinician, a researcher, and a behavior, then that nurse may be held legally responsible role model for both nursing and medical staff. Certifica- for any damages incurred. It is important to note that no tion may be obtained through either NCC (high-risk legal wrong is considered to have been committed if there neonatal nursing) or the AACN Certification Corpora- is no harm done to the patient. tion (critical care clinical nurse specialist). Upon certifica- Before a malpractice suit can be filed, the plaintiff must tion, the CNS may use the credentials of RNC (registered prove that four elements are present: (a) the nurse had a nurse certified) or CCNS (critical care clinical nurse spe- duty to the patient; (b) there was a breach of that duty; (c) cialist), depending on the source of certification. harm occurred to the patient; and (d) it was the breach of By virtue of their advanced training and education, that duty that resulted in damages to the patient. Typical- APNs are held to a higher standard than neonatal staff ly a nurse expert witness speaks to the standards of nurs- nurses. The standard of care is what a reasonable and ing practice as they apply to the first three elements. The prudent APN working in the neonatal area would do, fourth element, also known as proximal cause, usually given comparable circumstances. Generally, the standard requires a medical expert opinion to link the action to the of care expected by the law is higher whenever a nurse has damages. advanced education or training (Bernzweig, 1996). Baby J had Apgar scores of 3 and 8 at one and five minutes, respectively. Although his condition was improv- Components of Neonatal Nursing Malpractice ing, breath sounds indicated that he required suctioning. The plaintiffs alleged that there was a failure to provide The term malpractice means that the nurse’s conduct adequate special care and needed attention, resulting in failed to meet the appropriate standard of care (the care Baby J suffocating in his own secretions. He was found that a reasonable and prudent nurse would provide) and cyanotic at 2 hours of age. Resuscitation established a this conduct resulted in damages to the patient (Gic, heart rate after 18 minutes. He was transferred to anoth- 2001). Not all transgressions are automatically consider hospital and removed from life support 4 days later. ered to be malpractice, however. The practice of nursing The plaintiff claimed that the resuscitation was delayed does not guarantee perfect outcomes, nor is a nurse and improperly performed. The hospital argued that the expected to be responsible for unexpected occurrences baby appeared to be a normal newborn with an unknown during the course of care unless those outcomes can be etiology for the cardiopulmonary arrest and that inborn attributed to negligence on the part of the nurse (Verklan, errors of metabolism caused Baby J’s death. The defen- 1999). dants also responded that failure to respond to a resusci- A nurse who is suddenly and unexpectedly challenged tation does not imply negligence (Laska, 1997). with an emergency situation is not expected to use the Although the plaintiffs were able to prove there was a same judgment and prudence as would be required when duty to the patient, they were not able to prove that the in a calmer and more deliberate situation. If the nurse per- defendant breached that duty. The failure to respond to a forms to the best of his or her ability, and if a reasonable need for resuscitation did not mean negligence. Because and prudent nurse would have followed the same course there was a possibility that an inborn error led to the of action given the circumstances, then that nurse has baby’s death, the plaintiffs were not successful in proving done all that the law requires, even if in hindsight it proximal cause. Thus, the plaintiffs lost the case even appears that a better course of action would have been though the baby died. more appropriate (Davis, Weisgal, & Neggers, 2001). Additionally, a mistake in judgment does not necessarily Common Areas of Malpractice Allegation in mean the nurse was negligent. If the nurse uses reasonable Neonatal Nursing and ordinary skill and care, similar to what would be Resuscitation. Resuscitation situations are very often used in a like situation by a nurse possessing reasonable the central issue in malpractice suits. Although the major- and average skill, the nurse is not guilty of negligence, ity of neonates transition to extrauterine life without dif- even if the judgment is subsequently proven to have been ficulty, 10% require some assistance to initiate respiration incorrect (Davis et al., 2001). at birth and 1% require extensive resuscitative interven- Neonatal nurses are expected to be in close contact tions to survive (American Academy of Pediatrics [AAP] with the physician and/or APN to communicate signs of & American Heart Association [AHA], 2000). The patients’ distress in a timely manner. As professionals, Neonatal Resuscitation Program (NRP) recommends that they are expected to utilize independent judgment and be at least one person who is skilled in initiating resuscita- accountable for their actions and decisions. Their profes- tion and whose primary responsibility is the baby should sionalism and accountability are the reasons that neona- be present at each delivery (AAP & AHA, 2000). If that tal nurses have increasingly been identified as defendants person is not capable of performing all steps of the resus- in malpractice cases. Once it has been demonstrated that

January/February 2004 JOGNN 119 citation process, then someone else must be immediately of the onset and progression of symptoms, along with available in case of need. Once a delivery is identified as communication to the physician or NNP to keep them high risk with the possibility that advanced resuscitation abreast of changes in the neonate’s condition, is essential. efforts may be required, it is recommended that at least In another case, Baby T. was born at 0130 after a dif- two people be present to manage the neonate—one with ficult labor and traumatic forceps delivery. Dr. S. complete resuscitation skills and one or more to assist remained with him for approximately 1 hour before the with the resuscitation efforts. The ideal would be to have baby was taken to the nursery. He left the hospital at a dedicated resuscitation team that has a specified leader approximately 0300, with instructions to the nurse that and all members aware of their roles (AAP & AHA, the “extern medical student” was in charge of Baby T. but 2000). that he was to be called if needed. The nurse was con- In one case, almost immediately after birth, Baby M. cerned about Baby T. from the outset, taking vital signs developed respiratory distress in the delivery room. every 15 minutes. She called the extern at 0345 and again Although the nurse suctioned and administered oxygen, at 0400. Both times the extern said the baby looked the neonate became apneic. The physician intubated for “fine.” The nurse did not call Dr. S. The nurse’s aide the purpose of suctioning; however, the nurse could not assigned to Baby T. fell asleep twice during the night and provide the proper suction tubing to fit the endotracheal did not take vital signs as needed. Baby T. was eventually tube. The tube was removed, oxygen provided, and the transferred to another hospital when it was discovered neonate was re-intubated. The physician asked for an that he had gone into hypovolemic shock related to a sub- Ambu-bag. The only one available had a mask attached galeal hematoma, likely the result of the forceps delivery. to it, which neither the nurse nor physician could remove. The plaintiffs brought a negligence suit against the hos- Baby M.’s condition deteriorated. The physician provided pital after the baby’s death, alleging that the hospital per- mouth to endotracheal tube resuscitation until the proper sonnel failed to take proper action when Baby T. dis- equipment arrived. Baby M. survived with evidence of played signs of distress. The jury returned a verdict hypoxic ischemia encephalopathy and cerebral palsy. against the hospital of $800,000, which was reduced to The court returned a verdict against the hospital but $650,000 because Dr. S. agreed to a pretrial settlement of found the physician not negligent based on the nurse’s tes- $150,000 (Tammelleo, 1995). timony. The nurse testified that (a) it was her responsibil- The nurse had been so concerned about the baby that ity to stock the delivery room and know how to use the she had assigned an aide to closely observe for any equipment, (b) she did not know why she could not changes in Baby T.’s condition. She should have relieved remove the mask from the Ambu-bag, (c) she did not the aide of that duty when the aide fell asleep twice and restock the suction tubes/equipment because she did not did not monitor the patient’s vital signs as requested. think she would need them, and (d) she had never partic- Thus, the nurse was also negligent by not providing her ipated in a delivery in which an Ambu-bag was used. patient with a level of monitoring and observation con- Experts testified that the hospital breached its standard of sistent with the severity of his or her condition. care by failing to have the proper equipment available and Intravenous Therapy. In caring for premature infants its employees properly trained in the use of such equip- and those with high-risk conditions, placement of central ment. The physician’s testimony supported the allegation and peripheral intravenous lines for the provision of flu- that the nurse’s actions contributed to the baby’s injuries. ids, nutrients, and medications is commonplace. As with A $9 million verdict was awarded to the plaintiffs (Brent, any procedure, intravenous therapy has associated risks, 2001a; Mather v. Griffin Hospital, 1988). The above case especially that of extravasation. The immaturity of the also illustrates the concept of respondeat superior, which neonate’s skin adds to the damage from extravasation, held that the hospital, as the nurse’s employer, was liable often resulting in involvement of a larger percentage of for her actions. Today, it is very likely that the nurse the skin surface than would occur in an adult. Infiltration would have been identified as an individual defendant. of a caustic fluid requires prompt attention. Although cal- Respiratory Distress. A significant percentage of mal- cium is commonly associated with an IV burn, other sub- practice cases involve nurses’ assessments of neonates stances will also produce the same damage. with symptoms of respiratory distress. There are three After birth, Baby X. was immediately admitted to the major assessments performed in the neonatal period: (a) NICU with a diagnosis of meconium aspiration syn- at birth, to evaluate adaptation to extrauterine life; (b) drome. The condition deteriorated, resulting in a resusci- within the first 2 hours after birth, to evaluate major sys- tation situation. During the code, concentrated saline was tems and perform a physical examination; and (c) prior to infused in the intravenous (IV) site in the left hand. The discharge, to ensure there is a smooth transition to home IV fluid infiltrated, resulting in edema and tissue damage (Carr, 1999). Because symptoms of respiratory distress to the dorsum of the hand. Although the wound healed may indicate a multitude of disorders, prompt recognition without the need for skin grafts over an 8-week period, a

120 JOGNN Volume 33, Number 1 permanent scar was left. The plaintiff alleged negligence, TABLE 1 negligent medication error and gross negligence for stock- Strategies to Reduce Medication Errors ing the wrong concentrated solution of saline in the NICU. An $85,000 verdict was returned (Laska, 1999). Incorporate the five “rights” without fail The standard of care is to visually inspect all intra- Double check with another registered nurse the medication volume, dose, and route, and the patient’s name venous sites at least once an hour to observe for color changes, edema, leaking of fluid, intactness of the dress- Contact the pharmacy when medication not labeled correctly and withhold administration until labeling issue ing, and to be sure that the fluid is indeed infusing into the clarified neonate. The intravenous pump should also be visually Re-verify a medication volume over 1.5 ml when unfamiliar inspected to ensure that the drip rate is correct, the cor- with the medication rect amount per hour has been infused, and the correct Monitor serum drug levels, when appropriate solution is being infused. Documentation procedures dif- Use medication administration equipment only after orien- fer according to institution but should contain the above tation and demonstrated competence has been proven relevant information at least hourly in the nurses’ notes or Medication area should be user-friendly: that is, sufficient flow sheet. lighting, quiet with limited distractions, areas where medications are kept should adhere to state/federal Medication Errors. Newborns admitted to the well agency rules for storage, and so on. nursery receive antibiotic eye ointment and a vitamin K injection. However, babies admitted to high-risk nurseries typically receive countless doses of a variety of medica- to Volpe (1995), serum glucose is only an approximation tions, often given under emergent conditions. It is of the level of cerebral glucose, and that level may be believed that of the 1.6% to 38% error rate suspected for altered by any condition that affects cerebral blood flow all medications administered, only about 25% of the or increases cerebral glucose utilization. errors are reported (Osborne, Blais, & Hayes, 1999). The neonatal nurse should be familiar with the three Reasons for medication errors include fatigue, difficulties etiologies for hypoglycemia: (a) inadequate substrate sup- in communication, mistakes transcribing medication ply, (b) increased rate of glucose utilization, and (c) hyper- orders, and failure to follow institutional procedure and insulinemia as a result of the mother’s increased glucose policies (Beckman, 1996; Osborne et al., 1999). level. Observation and assessment skills are critical, as All nurses are taught the five rights of medication most newborns are asymptomatic or present nonspecific administration: right patient, right dose, right medication, signs such as tremors, jitteriness, lethargy, respiratory dis- right route, and right time. The professional neonatal tress, hypotonia, poor feeding, irritability, or a weak or nurse also is responsible for understanding the pharma- high-pitched cry. ceutical actions of the medications. “System errors” have All symptomatic neonates require immediate treat- been recognized in the recent past; however, it is still ment. The nurse should be aware that the medical stan- expected that the nurse will question the prescribing dard of care is to administer 2 to 2.5 ml/kg of 10% dex- physician when problems or issues arise related to the trose in water (D10W) intravenously, followed by a ordering and administration of medications. Interventions continuous infusion of glucose to provide 4 to 6 to decrease medication errors can be found in Table 1. mg/kg/min, or an intravenous rate of approximately 80 ml/kg/day using D10W. Because it is outside the scope of Hypoglycemia. Another common situation for litigation practice for the nurse to prescribe the medication, the sit- occurs when the nurse fails to monitor for hypoglycemia uation mandates rapid communication between the nurse in the high-risk neonate or fails to recognize hypoglyce- and the physician/NNP to relate the clinical circum- mia in a low- or high-risk neonate. Although it is cur- stances and obtain the order to give the glucose. The rently unknown how low blood glucose levels can go and nurse is then responsible for monitoring blood glucose how long the serum level can remain at a low level before levels to determine the need for further boluses, increased cerebral damage occurs, it is currently believed that the intravenous glucose requirements, and stability of the glu- longer hypoglycemia remains undetected, no matter how cose level. low, the higher the risk of permanent sequelae. What is considered an appropriate or normal level Documentation. Medical records are essential in a depends on the neonate’s clinical status. For example, a malpractice case, as they provide evidence of the sequence blood glucose level of 40 mg/dl in a full-term neonate of events, the time frame in which they occurred, and the who is eating and transitioning well to extrauterine life identification of the participants who provided the care. may be acceptable, but it would be considered low in the Because health care providers are not expected to remem- symptomatic high-risk neonate with multisystem organ ber every patient situation, the medical record serves as an failure and an increased glucose requirement. According aid to recall what occurred. The attorney will use the

January/February 2004 JOGNN 121 Discussion edical records are essential in a Today’s professional neonatal nurse is held account- M able for his or her actions and therefore can be identified malpractice case, as they provide the sequence as a defendant in a malpractice suit. When a neonatal out- of events, the time frame in which they occurred, come is not what was expected, parents frequently look for someone to blame for a course of events. When a baby and the identification of the participants who is injured, the cost of liability is high, due to the infant’s provided the care. long life expectancy, the long statute of limitations for injuries to children, and sympathy toward the family. Par- ents and families experience a great deal of stress during the hospitalization of a baby and may become distrustful patient’s medical chart to provide evidence in legal proof the health care providers when lines of communication ceedings that the nurse provided the standard of care, did are difficult. They will closely scrutinize each error, no so within the scope of the nurse practice act, and provid- matter how minor, or regardless of the fact that no harm ed all necessary “routine” care (Iyer, 2001b). was actually caused. A good rapport between the family Baby S. was brought to the emergency room owing to and the health care team will go far to diffuse emotions an infected circumcision site. He was admitted to the and prevent a malpractice suit in the event that a mistake pediatrics floor overnight to receive intravenous antibiot- does occur. ic therapy. He was admitted to the NICU approximately 26 hours later owing to seizures that eventually led to the REFERENCES baby arresting. Upon review of the record, numerous critical facts were found to be at issue, including his condi- American Academy of Pediatrics and American Heart Associa- tion as well as the course of treatment given on the floor tion. (2000). Textbook of neonatal resuscitation (4th ed.). until the time he was admitted to the NICU. The medical Elk Grove Village, IL: American Academy of Pediatrics. records of Dr. Tulip’s notes regarding his care, Dr. Davis’s American Nurses Association. (1998). Standards of clinical notes regarding the code, all laboratory test results, NICU nursing practice. Washington, DC: Author. records, physician orders, discharge summary, radiology, Association of Women’s Health, Obstetric and Neonatal Nurs- es. (2003). Standards for professional nursing practice in and EEG reports set forth some specifics of the case. the care of women and newborns (6th ed.). Washington, However, it was found that other medical records were DC: Author. “missing” that could not be located even after an exhaus- Association of Women’s Health, Obstetric and Neonatal Nurses tive search. These records included the narrative nursing and National Association of Neonatal Nurses. (1997). notes, medication sheet, graphic records, and the nursing Neonatal nursing: Orientation and development for regis- care flow sheet. The plaintiffs alleged that Baby S. sus- tered and advanced practice nurses in basic and interme- tained brain damage as a result of the hypoxic ischemia diate care settings. Washington, DC: Authors. related to the prolonged seizure, which they allege would Beckman, J. P. (1996). Nursing negligence: Analyzing malprac- have been avoided had he been directly admitted to the tice in the hospital setting. Thousand Oaks, CA: Sage. NICU where the seizures would have been recognized and Bernzweig, E. (1996). The nurse’s liability for malpractice: A controlled, thereby avoiding the “crash.” The judge ruled programmed course (6th ed.). St. Louis: Mosby. Brent, N. J. (2001a). Concepts of negligence, professional negli- in favor of the plaintiffs on appeal, finding that the hos- gence, and liability. In N. J. Brent (Ed.), Nurses and the pital had a duty to maintain the patient’s medical law (2nd ed., pp. 53-74). Philadelphia: W. B. Saunders. record, and concluded that a presumption of negli- Brent, N. J. (2001b). The nurse and quality patient care. In N. J. gence and causation of the patient’s injuries was justi- Brent (Ed.), Nurses and the law (2nd ed., pp. 91-111). fied. The hospital had the burden to prove that the Philadelphia: W. B. Saunders. baby’s injuries were not caused by the hospital’s own neg- Carr, K. E. (1999). Care of the neonate: Nursery, resuscitation ligence (Laska, 1994, p. 7). and transfer issues. In D. M. Rostant & R. F. Cady (Eds.), Nursing documentation composes the majority of the Liability issues in perinatal nursing (pp. 131-147). medical record. Thus, nursing notes become the most Philadelphia: Lippincott. important evidence to reflect how care was rendered as Davis, S. L., Weisgal, H. G., & Neggers, W. F. (2001). Trial tech- well as the outcomes of that care. Omissions, inaccura- niques. In P. Iyer (Ed.), Nursing malpractice (2nd ed., pp. 773-805). Tucson: Lawyers & Judges Publishing. cies, or missing documentation immediately places the Gic, J. A. (2001). Nursing and the law. In S. S. Sanbar, A. Gibof- record, as well as the health care providers, under suspi- sky, M. H. Firestone, T. R. LeBlang, B. A. Liang, & J. W. cion.

122 JOGNN Volume 33, Number 1 Synder (Eds.), Legal medicine (5th ed., pp. 128-136). St. Tammelleo, A. D. (1989). Failure to monitor “well baby”: Louis: Mosby. Legalities. Regan Report on Nursing Law, 30, 1. Iyer, P. (2001a). The foundations of nursing practice. In P. Iyer Tammelleo, A. D. (1995). Nurses fail to “go over doctor’s (Ed). Nursing malpractice (2nd ed., pp. 3-23). Tucson: head”: Death results. Regan Report on Nursing Law, 36, Lawyers & Judges Publishing. 6. Iyer, P. (2001b). Nursing documentation. In P. Iyer (Ed.), Nurs- Tammelleo, A. D. (1998). Neonatal nurse’s reprehensible con- ing malpractice (2nd ed., pp. 75-111). Tucson: Lawyers & duct results in revocation. Regan Report on Nursing Law, Judges Publishing. 38, 9. King v. Department of Health & Hospitals. (1999). 728 So. 2d Verklan, M. T. (1999). Legal issues in the NICU. In J. Deacon & 1027, 1030 (La. Ct. App.), writ denied, 741 So. 2d 656 P. O’Neill (Eds.), Core curriculum for neonatal intensive (La. 1999). care nursing (2nd ed., pp. 753-771). Philadelphia: W. B. Laska, L. (1994). Nursing records “missing”: Spoilation of evi- Saunders. dence. Medical Malpractice Verdicts, Settlements & Verklan, M. T. (2001). Neonatal nursing malpractice issues. In Experts, 35, 7. P. Iyer (Ed.), Nursing malpractice (2nd ed., pp. 159-189). Laska, L. (1997). Newborn suffers cyanosis soon after birth due Tucson: Lawyers & Judges Publishing. to lack of suctioning: Brain damage leads to death— Volpe, J. (1995). Hypoglycemia and brain injury. In J. Volpe defense verdict. Medical Malpractice Verdicts, Settlements (Ed.), Neurology of the newborn. Philadelphia: W. B. & Experts, 1, 25-26. Saunders. Laska, L. (1999). Newborn given concentrated saline solution in IV instead of normal saline—$85,000 Texas verdict. Med- ical Malpractice Verdicts, Settlements and Experts, 15, M. Terese Verklan, PhD, CCNS, RNC, is an associate professor 22. and neonatal clinical nurse specialist, University of Texas Mather v. Griffin Hospital. (1988). 540 A.2d 666 (Conn.). Health Science Center at Houston, and director of clinical Monarch, K. (2002). Nursing & the law: Trends and issues. research, Memorial Hermann Hospital System, Houston, TX. Washington, DC: American Nurses Association. Osborne, J., Blais, K., & Hayes, J. (1999). Nurses’ perceptions: When is it a medication error? Journal of Nursing Admin- Address for correspondence: M. Terese Verklan, PhD, CCNS, istration, 29, 33-37. RNC, 2323 Chappell Lane, Missouri City, TX 77459. E-mail: [email protected].

JOGNN Reviewer Panel: 2004

Vicki Akin, CNS, MSN Dianne Morrison-Beedy, RNC, WHNP, PhD Erin Anderson, RN, MSN Mary R. Nichols, RN, CS, FNP, PhD Joan Rosen Bloch, PhD, CRNP Susan A. Orshan, RNC, PhD Caroline Brown, DEd, CNS, WHNP, IBCLC Cynthia Persily, RN, PhD Anita Catlin, DNSc, FNP Kathie Records, PhD, RN Sandra K. Cesario, RNC, PhD Michelle Renaud, PhD, RN Andrea Christian, MS, RN, CNS Cyndi Roller, WHNP, CNM, PhD Patricia Creehan, RN, MSN, CS Patsy Ruchala, RN, DNSc Diane Holditch-Davis, RN, PhD Linda Snell, WHNP, DNS Barbara Leary Dion, RNC, ICCE, MA, MSN Mary Ann Stark, RNC, MS Pamela Dee Hill, RN, CBE, PhD, FAAN Rebecca B. Saunders, RNC, PhD Debra Hobbins, MSN, APRN, NP Jan Sherman, RN, NNP, PhD Debra Jackson, RNC, MPH, DSc Martha Sleutel, RN, PhD, CNS Lori Jackson, RNC, NNP Marilyn Stringer, PhD, CRNP, RDM Sheryd J. Jackson, RNC, MS, WHNP Rosemary Theroux, RNC, MS, PhD Teresa Johnson, PhD, RN Lorraine Tulman, DNSc, RN, FAAN Susan Kardong-Edgren, RNC, MS, FACCE Leona VandeVusse, CNM, MSN, PhD Virginia L. Kinnick, RN, CNM, EdD Victoria von Sadovsky, PhD, RN Gail Schoen Lemaire, PhD, APRN, BC Kathryn Wekselman, RNC, PhD Lynne P. Lewallen, RN, PhD Candy Wilson, RNC, MSN Louise K. Martell, RN, MN, PhD Jeanne Wilton, RNC, MS, IBCLC, WHNP Patricia R. McCartney, RNC, PhD Ruth Wittman-Price, CNS, MSN, RN Kristen Montgomery, RN, PhD Margaret R. Wood, RN, PhD Anne A. Moore, RNC, MSN

January/February 2004 JOGNN 123 CLINICAL ISSUES

Liability in the Care of the Elderly Patricia Iyer

The most common reasons nursing homes are This article addresses nursing home litigation, sued are residents’ fractures and pressure ulcers. The which is one of the fastest growing areas of medical majority of cases in a sample of 118 nursing home malpractice today. In the 1980s, the Omnibus Rec- lawsuits resulted in settlement or a plaintiff winning at onciliation Act (OBRA) established standards for trial. The most successful method of defending a law- the provision of care in nursing homes. In addition, suit was to dispute the facts. Risk prevention strategies states used these standards when developing their include working in a sufficiently staffed facility, attend- own regulations to define the standard of care in ing to the needs of the residents and families, and nursing homes. In the late 1990s, a large landmark complying with federal and state regulations. verdict was rendered in California against a nursing JOGNN, 33, 124-131; 2004. DOI: 10.1177/ home, and attorneys became aware that the envi- 0884217503261132 ronment in which these cases were litigated was Keywords: Nursing home lawsuits—Nursing changing. Up to that point, negligence cases involv- home litigation—Nursing home negligence ing the elderly were infrequent and did not yield many dollars in settlements or verdicts. Monetary Accepted: June 2003 awards are based in part on lost earning capacity or loss of support for dependents. Such factors, howev- The voice at the other end of the plaintiff attor- er, are not often involved in calculating nursing ney’s phone said, “My mother was terribly hurt at the home awards. nursing home. Will you take my malpractice case?” The increase in nursing home negligence lawsuits Calls like this come in every day in a busy plaintiff occurred as a result of increased attention to this attorney’s office. Some of the questions that might specialized area of health care. The OBRA standards be asked are, What happened to your mother? Who and concerns about the quality of care, staffing pat- said she was injured? How old is your mother? Have terns, and accidents in nursing homes have drawn the injuries been permanent? What is her current health care providers, regulators, and attorneys to condition? What was her health before the incident? examine the quality of the care delivered in nursing The majority of suits involving the institutional- homes. As a result, many marginally profitable and ized elderly occur because of care rendered while the low-quality nursing homes have closed. patient was in a hospital or nursing home rather Attention continues to focus on the quality of the than those living independently or with family mem- care provided in nursing homes. In July 2003, the bers. Suits involving assisted living facilities are rela- U.S. General Accounting Office reported on the tively uncommon but may increase in the future as prevalence of serious problems in nursing homes. more people living in these facilities become infirm. Actual harm to residents and other serious deficien- Liability issues involving care delivered to an elderly cies were cited for 20% of nursing homes or approx- person in a physician’s office by a nurse practitioner, imately 3,500 of such facilities during an 18-month or in a home care setting, are beyond the scope of period ending January 2002. These were not neces- this article. sarily legal liability events, however. This can be

124 JOGNN Volume 33, Number 1 compared with 29% being cited in an earlier period. relatively easy for a plaintiff’s attorney to present to a Weaknesses in states’ oversight of nursing homes, incon- jury. Although clinical experts contend that some pressure sistent reporting of complaints, and ineffective enforce- ulcers are unavoidable, many jurors believe that a pres- ment of regulations led to understatement of serious sure ulcer can occur only through neglect. Multiple stage problems in the quality of care of nursing home residents III and IV pressure ulcers, which cause sepsis, (U.S. General Accounting Office, 2003). osteomyelitis, or the need for flaps for closure, are partic- The majority of residents affected by deficiencies in ularly difficult to defend. Photographs taken by the fami- nursing home care are women. Women typically outlive ly or nursing home staff that detail the progress of a pres- their husbands and maintain their independence as long sure ulcer may be used at the time of trial. Enlarged, as possible. Despite their lower mortality, however, elder- mounted photographs of pressure ulcers make compelling ly women have greater morbidity, including limitations on their abilities to care for themselves. Thus, approximately 85% of all residents in nursing homes are women and Although clinical experts contend that some pressure ulcers are unavoidable, many jurors The current issues surrounding nursing home believe that a pressure ulcer can occur only negligence force all providers of nursing home through neglect. care to evaluate their risks for liability.

exhibits. The case below describes one recent jury’s reac- 70% of those women are widows (American Geriatrics tion to the development of pressure ulcers. Society, 1993). A Texas woman was admitted to a nursing home for a The current climate surrounding the issue of nursing short stay because she could not walk due to a fractured home negligence forces all providers of nursing home left fibula. She was provided with substandard care, how- care to evaluate their risks for liability. One of the ever, and as a result, suffered from severe malnutrition, surest ways of reducing risk is to become aware of the dehydration, stage IV pressure ulcers, and the develop- kinds of situations that are likely to result in poor out- ment of acute renal failure, which led to her death. The comes and litigation. case settled after mediation for $3.5 million (Karen Arledge v. Oak Grove Nursing Home, as cited in Laska, Common Liability Issues in 2002b, April). Nursing Home Cases Falls A recent study concerning the rise in nursing home lit- Falls are the second most common source of liability. igation revealed that more than half of the claims in the More than 50% of nursing home residents fall each year, United States involved deaths. The next most frequent and more than 40% of those persons experience repeat harms alleged were pressure ulcers, dehydration and falls. Approximately 11% of these falls result in signifi- weight loss, and emotional distress (Stevenson & Stud- cant injury, such as hip fractures (Braun & Capezuti, dert, 2003). In several areas of the country, jury verdict 2000a). These incidents may lead to hip, vertebral, or publications provide details of the outcomes of settle- long bone fractures; subdural hematomas; or lacerations. ments and trials within a local jurisdiction. A variety of The immobility that follows a fall often accelerates a national jury verdict publications also compile informa- downward spiral, leading to pressure ulcers, contractures, tion from across the United States. Medical Malpractice pneumonia, and death. Falls that occur when caregivers Verdicts, Settlements and Experts is one such publication. drop a resident during a transfer are particularly difficult Information about nursing home cases published in this to defend. The standard of care requires careful move- source was evaluated for this article. ment of a resident using the appropriate number of trained staff. When the certified nursing assistants Pressure Ulcers involved in such an incident fail to report it to the profes- Table 1 enumerates liability issues reportedly involved sional nursing staff, the risk of liability escalates. in 2 years of nursing home cases. Pressure ulcers and frac- A nurse’s aide was attempting to move an 86-year-old tures are the most common reasons litigation is initiated. woman in Oklahoma, when the patient fell and broke Issues surrounding the development of pressure ulcers are both legs. The plaintiff alleged that the defendant should

January/February 2004 JOGNN 125 TABLE 1 Liability Issues in Malpractice Cases, 2001-2002 Liability is particularly high when the resident Issue 2001 2002 is dependent on the nursing staff for being fed. Pressure ulcers (65%) 16 11 Fractures after a fall or being dropped 14 19 Dehydration and malnutrition 7 3 The decedent was in relatively good health when she Failure to treat 6 2 sustained a fracture of her right wrist. She was admitted Neglect 5 2 to a nursing home for short-term rehabilitation. Over the Medication error 4 0 next 3 months, she became severely dehydrated and mal- Wandering 3 2 nourished and developed multiple pressure ulcers, which Sexual assault 3 3 required hospitalization on three separate occasions. The Subdural hematoma after fall 3 2 attending physician at the hospital testified that on the Failure to diagnose 3 2 third admission, she was in the worst condition he had ever seen for a patient admitted from a long-term nursing Choking 3 1 care facility. After her death, her family brought charges Strangled by a restraint 1 0 of negligence and malice against the nursing home for Burn 1 3 allowing the decedent to become dehydrated, malnour- Treatment error 1 1 ished, and develop pressure ulcers. The defendants argued Infection 1 2 that her preexisting condition predisposed her to those problems. The Texan jury awarded $25 million (Jane Source. Laska, Medical Malpractice Verdicts, Settlements and Experts. Elizabeth Olson v. Chisolm Trail Living and Rehabilita- tion Center, as cited in Laska, 2001, February). have used a gait belt or wheelchair to move the resident, Failure to Treat that the facility failed to hire and properly train employ- Cases of failure to treat involved delay in diagnosing a ees in transfer techniques, and that the nursing home was medical illness or failure to monitor a resident or treat a understaffed. The plaintiff alleged that the staff concealed problem, which resulted in deterioration of the resident’s other injuries sustained by the resident. The resident suf- health status. Examples of allegations related to failure to fered pressure ulcers, malnutrition, dehydration, and treat issues cited in 2001 and 2002 cases (see Table 1) infections. The case was settled on the eve of trial for $1 included failure to diagnose and treat urinary tract infec- million (Estate of Elfrieda M. Rodden v. Jessica Edwards tions, congestive heart failure, and myocardial infarction; and Integrated Health Services, Inc., as cited in Laska, monitor blood sugar; prescribe anticoagulants; prevent a 2001, November). psychiatric patient from swallowing foreign objects; prevent bowel obstruction from impaction; and monitor the Dehydration and Malnutrition condition of skin under a brace, resulting in an open frac- Dehydration and malnutrition place an elderly resident ture. at risk for acute renal failure, electrolyte imbalance, and In one case of failure to treat, which occurred in Flori- weight loss. Deficient institutional factors, particularly da, the resident developed pressure ulcers on her coccyx inadequate staffing and lack of professional nursing and left hip region. Charting on her records by the staff supervision, are the most likely among a number of con- failed to reveal documentation that the resident had been tributing causes. These two factors lead to poor care prac- given a bath or shower on 11 straight days or was fed din- tices such as undiagnosed dysphagia, inadequate pain ner on 6 straight days. The records also failed to ade- management, liquids inaccessible to the resident, and quately document treatment of the resident’s pressure inadequate amount of liquids offered to the resident (to ulcers. The decedent died in hospice approximately 2 prevent incontinence and the need to change bed sheets) weeks after being discharged from the long-term care (Braun & Capezuti, 2000b). facility. The jury found that the negligence of the nursing Liability is particularly high when the resident is home did not cause the decedent’s death but did cause dependent on the nursing staff for being fed. Failure to injury and awarded $959,920.09. This included a puni- intervene when weight loss is becoming evident deviates tive damages award of $800,000 (Florence Rudich as PR from the standard of care. The development of malnutri- of the Estate of Ida Revitz v. NME Properties, Inc. et al., tion and dehydration is a frequently cited complication in as cited in Laska, 2001, September). summaries of nursing home negligence cases.

126 JOGNN Volume 33, Number 1 Single Event Injuries Riverwood Associates, and John D. Galbraith, Jr., as Specific types of single-event injuries carry a high risk cited in Laska, 2002a, July). for litigation. These include sexual assault, wandering with injury, and burns. Residents have been physically or Overview of the Litigation Process sexually assaulted by other residents, visitors, and staff. Cognitively impaired women of childbearing years have A nursing home negligence case begins with a request become pregnant in nursing homes. A resident of a devel- of a family member or resident for the assistance of a opmental center was raped by an employee, causing her plaintiff’s attorney. The attorney obtains the details of the to become pregnant. The child was subsequently diag- case and usually then orders the resident’s medical nosed with autistic spectrum disorder and other severe records. Under the Code of Federal Regulations, 42 CFR developmental disabilities. The case settled for $2.7 mil- 483.10, the nursing home is required to produce a med- lion (Maxwell v. State, as cited in Laska, 2002, May). ical record within 2 working days of a request. Wandering is not uncommon among nursing home res- The medical record is analyzed by the attorney and an idents. An elderly resident may wander away from a facil- expert witness for proof of negligence and injuries. In ity as a result of a nonactivated door alarm. The risks to some states, an affidavit of merit must be completed by an the resident include falling, drowning, being struck by a car expert witness before or soon after the filing of a lawsuit. or train, being assaulted, and dying from exposure to the The plaintiff’s attorney may request the nursing home to elements. In one such case, a resident with late-stage provide him or her with documents describing its policies Alzheimer’s disease went out through an unlocked door at and procedures, with job descriptions, and with other a senior care center. After traveling 50 feet from the facil- documents. The plaintiff’s expert witness usually prepares ity in the dark, she fell and struck her head. She suffered a written report detailing the deviations in the case from a bilateral subdural hematoma as a result of her fall and the standard of care and the resulting damages. An expert subsequently died. The plaintiff alleged that the facility may be hired by the defense to evaluate and refute the was negligent in allowing the door to be unlocked and in claims of the plaintiff. Depositions of both experts may be failing to have adequate staff. The plaintiff also argued taken. Settlement negotiations may occur following the that the defendant was negligent in failing to have ade- end of the discovery phase. quate security devices such as video cameras and warning In general, two kinds of cases result in jury trials rather devices. The case was settled for $525,000 (Carol than being settled before trial. First, the case might be Thomas Bowen and Jean Bowen Cochoy as the Natural viewed as defensible, providing the nursing home with a Children of Anna Imogene Bowen v. Cara Vita Senior reasonable chance of winning the trial. In the second type Care Management, LLC and Signal and Communications of case, the monetary value that the plaintiff’s attorney Systems of Georgia, Inc., as cited in Laska, 2002, places on the case may be too high for settlement. In this November). situation, the defense of the nursing home negligence case Residents with cognitive deficits, immobility, contrac- centers on winning the case. When the liability is clear or tures, or other limitations should not be allowed to smoke admitted, the strategy of the defense attorney may turn to in an unattended environment. Residents can be burned attempting to minimize the size of the jury award by dis- by scalding water, chemicals, or cigarettes. Hot water puting the extent of the damage. The jury may decide at from a coffee urn has been added to tubs, and hot water the conclusion of the trial that there was no negligence. If heaters have provided scalding water in showers. the jury finds negligence, and believes that it caused the The decedent was a resident of a nursing home when a resident’s injuries, the jury may award compensatory sitz bath was ordered for a cyst on her labia. The nurses damages and/or punitive damages. Unless they exceed the thought they were supposed to steam the decedent’s vagi- limits of liability in the policy, compensatory damages are nal area as opposed to placing her in lukewarm water. generally covered by insurance. Moreover, irrespective of The nurses obtained the water for the bath from the insurance, a judge usually has the authority to reduce industrial coffee urn in the kitchen. The water tempera- awards that are irrationally high given the facts of the ture was 185 degrees. The decedent suffered second- and case. third-degree burns. She died from congestive heart failure Not covered by insurance, punitive damages are 7 months after the incident. The estate alleged that the designed to punish the facility. Punitive damages have death was related to the burning incident. The action set- been relatively uncommon in medical malpractice cases in tled for $1.5 million (Marilyn Pease, As Special Adminis- general and specifically in nursing home cases. One study trator of the Estate of Elizabeth Jawor, Deceased v. Brent- showed that punitive damage awards accompanied com- wood North Nursing and Rehabilitation Center, Inc., pensatory awards in only 2% of all of the medical mal-

January/February 2004 JOGNN 127 TABLE 2 dicts, Settlements and Experts were analyzed to determine Nursing Home Suit Outcomes who won the majority of cases. The outcomes are shown in Table 2. In this sample of 118, the chances of a plain- Outcome 2001 Cases (64) 2002 Cases (54) tiff winning a nursing home case that went to trial were higher than for other medical malpractice cases. Attor- Settled 26 (41%) 24 (44%) neys have found that jurors have generally negative opin- Tried 38 (59%) 30 (56%) ions of nursing homes and are prone to evaluating a case Plaintiff verdict 17 (65%) 17 (71%) in terms of the care they would want their elderly parents Defense verdict 9 (35%) 7 (29%) or grandparents to receive. When plaintiffs’ attorneys have urged juries to “send a message” to large for-profit Source. Laska, Medical Malpractice Verdicts, Settlements and owners of nursing home chains by rendering large verdicts, many juries have complied. TABLE 3 Table 3 depicts the mean and medium values for set- Verdict and Settlement Means and Medians for tlements and verdicts for the 118 cases in this sample. In 2001 and 2002 Nursing Home Cases the Stevenson and Studdert study (2003), plaintiff and defense attorneys reported that 8% of nursing home cases 2001a 2002b reached trial and that nearly half of these resulted in verdicts for the plaintiff. Among the claims resolved out of c Median $540,000 $770,000 court, 88% involved compensation payment to the plain- d c d Mean $12,162,474 $2,785,580 tiff. This is nearly 3 times the rate of payment typically aData based on 64 settled cases or trials involving nursing home cases observed among medical malpractice claims. The average as published in Laska, Medical Malpractice Verdicts, Settlements and payment, whether achieved through settlement or a jury Experts. verdict, was $406,000. bData based on 54 cases as published in Laska, Medical Malpractice Verdicts, Settlements and Experts. Defense of Nursing Homes As it becomes increasingly costly to settle cases, the cThe mean reflects 49 published verdicts or settlements. The mean includes three large settlements, which were for $78,000,000, defense attorney’s role focuses on minimizing losses $120,000,000, and $313,000,000. If these three verdicts were and defending the cases deemed defensible. The section dropped, the mean would be $1,837,853. that follows identifies some commonly used defenses. dIf the highest verdict, which was for $50,000,000, were dropped, the Strategies used in the 2001 and 2002 cases are shown in mean of 43 cases would be $1,687,570. Table 4 and are briefly described below. No Defense Strategy Was Provided in Case Descrip- practice cases filed in 1995 through 1997 and in 1% of tion. In a large number of the cases reported, there was no cases filed in 1998 through 2000 (Shannon & Boxold, explanation about how the case was defended. 2002). The Standard of Care Was Followed. The assertion Outcomes of Nursing Home Negligence Suits that the facility provided appropriate care was the most commonly used argument in defending a nursing home. The majority of medical malpractice (in contrast to The defense then asserted that the injuries were due to an nursing home) suits are dropped or settled before going to unavoidable accident or some other cause. One example trial. Of those that are tried, the defense wins the greater of this position is described in the following case. number of cases. The defense won 62% of all medical A resident was admitted to a nursing home. Her med- malpractice cases tried in 2000, down from 66% in 1999. ical problems included Parkinson’s disease, dementia, For the years 1994 to 2000, in which physicians were non-insulin-dependent diabetes, anemia, and hypov- being sued more often than were the institutions in which olemia. She was later hospitalized for bronchial pneumo- they practiced, the probability was 70% that a physician nia, malnutrition, dehydration, urinary tract infection, would win the trial in which he or she was the defendant. and toxic encephalopathy. While she was in the hospital, When the hospital was also named as a defendant, the her condition worsened and she died. The plaintiff alleged chance of a defense win was only 65%. Hospital mal- that the defendants failed to provide necessary medical practice suits (without physicians named as defendants) care and appropriate monitoring, among other things. were won by the defense 50% of the time (Shannon & The defendants argued that the resident had died from Boxold, 2002). pulmonary edema and not as the result of negligence. The The 118 cases involving nursing homes that were action settled for $150,000 (Darla L. Sanford Fink, Indi- reported in 2001 and 2002 in Medical Malpractice Ver- vidually and as Representative of the Estate of Jennie San-

128 JOGNN Volume 33, Number 1 TABLE 4 Common Nursing Home Defense Strategies

Defense Strategy 2001 2002 No explanation of defense strategy was provided. 22 20 The standard of care was followed. 16 9 The resident’s injury/death was caused by a preexisting medical problem. 12 7 It did not happen here or it did not happen the way the plaintiff said it did. 4 7 The plaintiff was negligent. 3 5 It was an accident or it happened so quickly. We could not stop it. 3 3 We did the best we could. 2 0 We admit liability. 21 The pressure ulcers were unavoidable. 1 2 Our records are incorrect. He really was fed dinner for months. 10 The family did not visit very frequently. 1 0

Source. Laska, Medical Malpractice Verdicts, Settlements and Experts. ford, deceased, v. William E. Campbell, Senior Care Con- several cases were won based on the medical record, as sultants, Inc., as cited in Laska, 2001, August). described in the examples below. The plaintiff asserted that the resident was pulled from The Resident’s Injury/Death Was Caused by a Preex- her bed and developed untreated atrial fibrillation. The isting Medical Problem. By definition, a resident of a defense asserted that that there was no evidence she was nursing home needs care and supervision because of med- pulled from her bed and that she most likely fell (Estate ical problems. Many residents are cognitively impaired, of Anna Prairie, deceased, v. Snow Valley Health which affects their safety awareness and judgment. The Resources, Inc. Rakesh Marwaha MD, as cited in Laska, most common cause of dementia is Alzheimer’s disease, 2001, April). accounting for approximately 50% of all cases of demen- In another case, the plaintiff contended that the resi- tia. Alzheimer’s affects 2% to 4% of the population over dent fell twice at the defendant’s nursing home, fracturing the age of 65 and more than 45% of those over the age of her hip. The defendant was able to show that the resident 85 (Shuster, 2000). Residents afflicted with Alzheimer’s fell several times at the assisted living facility where she disease may be injured as a result of symptoms of the dis- had lived prior to admission to a hospital before transfer ease, which include following others around, wandering, to the nursing home. Hospital records also reflected the pacing, aggressive behavior, difficulty recognizing objects, complaints of hip pain, and a physician speculated that difficulty planning activities, and loss of safety awareness the resident had a possible hip fracture at the assisted liv- (Keane, 2000). In the terminal stages of the disease, the ing facility (Parrish Individually and as PR of Estate of resident may lose the ability to swallow, move, under- Morris v. Port Vancouver Convalescent Center, as cited in stand, or communicate (Carney & Meier, 2000). If not Laska, 2002b, April). countered with tube feeding, malnutrition may result In a third case, the resident fell while attempting to from the resident’s inability to swallow. walk to the bathroom. She contended, among other The nursing home staff is expected to take into consid- charges, that she should have been provided with a more eration the preexisting medical problems of a resident and stable steel commode rather than the plastic commode she to deliver appropriate care. None of the reported 2001 had been given. She claimed that at a care planning meet- and 2002 cases in which the defense of preexisting condi- ing, the defendant’s personnel had discussed the unsuit- tions was used were successful in avoiding a settlement or ability of the commode. The defendant produced docu- jury verdict. mentation showing that the meeting at which the The Injury Did Not Happen Here or Did Not Happen commode was discussed took place after the accident, not the Way the Plaintiff Asserts It Did. The circumstances of before. The defendant’s nurse testified that the plaintiff the injury were disputed in three of the eight cases won by was supplied with the proper commode for someone with the defense in the 2001 sample and in four of the six cases her disability (Ruth Tannenbaum v. Glen Arden Health won by the defense in the 2002 sample, making it the Care, as cited in Laska, 2002b, July). most successful strategy in this sample of cases. The qual- The remaining defenses shown in Table 4 were largely ity and completeness of the medical record has a major unsuccessful in preventing the plaintiff from settling or effect on the ability to assert this defense. In the sample, winning the case at trial. For more information on

January/February 2004 JOGNN 129 defending nursing home claims, see Myers (1999), Iyer women. There is no shortage of either concerned family and Lubin (2003), and Rosenblum (2002). members who expect quality care to be delivered or attorneys willing to evaluate care to see if the appropriate stan- Risk Prevention dards were met. Preventing a nursing home suit from being filed by providing safe, effective care is far less cost- One of the surest ways to avoid becoming the target of ly than defending one. a nursing home negligence suit is to provide safe care that complies with the standard of care. Working in a suffi- REFERENCES ciently staffed facility, attending to the needs of the residents and families, and complying with federal and state American Geriatrics Society. (1993). Older women’s health regulations are essential risk-prevention strategies. With- (position paper). Retrieved August 16, 2003, from out adequate staffing, residents are at risk for complica- www.americangeriatrics.org/products/positionpapers/old- tions. Kayser-Jones, Schell, Porter, Barbaccia, and Shaw wmhlt.shtml (1999) found that when staffing was inadequate and Braun, J., & Capezuti, E. (2000a). The legal and medical aspects supervision was poor, residents with moderate to severe of physical restraints and bed siderails and their relationship to falls and fall-related injuries in nursing homes. dysphagia, severe cognitive and functional impairment, DePaul Journal of Health Care Law, 4(1), 1-72. aphasia or inability to speak English, and a lack of fami- Braun, J., & Capezuti, E. (2000b). Nutrition and hydration in ly or friends to assist them at mealtime were at great risk nursing homes. The Elder Law Journal, 8(2), 1-296. for dehydration. Adequate fluid intake could be achieved Carney, M., & Meier, D. (2000). Geriatric anesthesia: Palliative by simple interventions such as offering residents pre- care and end-of-life issues. Anesthesiology Clinics of ferred liquids systematically and by having an adequate North America, 18(1), 183-209. number of supervised staff helping them to drink while Iyer, P., & Lubin, M. (2003). Nursing home litigation. In P. Iyer properly positioned. Other risk prevention measures are (Ed.), Legal nurse consulting principles and practices (2nd good communication with family members of residents ed., pp. 293-345). Boca Raton, FL: CRC Press. and documentation of events. Kayser-Jones, J., Schell, E., Porter, C., Barbaccia, J., & Shaw, H. Some would argue that providing adequate numbers of (1999). Factors contributing to dehydration in nursing homes: Inadequate staffing and lack of professional super- supervised staff is not a simple intervention. Nursing vision. Journal of the American Geriatrics Society, 47(10), homes are affected simultaneously with a shortage of reg- 1187-119. istered nurses and with a low retention rate of certified Keane, J. (2000). Unusual behaviour (Alzheimer’s Society nursing assistants. The high turnover of certified nursing Advice Sheet No. 525). Retrieved March 7, 2003, from assistants is estimated at 200% per year. These jobs are http://www.alzheimers.org.uk/Caring_for_someone_with perceived as being low paid, as well as physically and _ dementia/Unusual_behaviour/advice_behaviour.htm emotionally demanding. Facilities are taking a hard look Laska, L. (Ed.). (2001, February). Dehydration, malnutrition, at their ability to recruit and retain qualified people and and decubitus ulcers at nursing home requiring three hos- to ensure that checks are carried out to identify applicants pitalizations, death, $25 million Texas verdict (Jane Eliz- for employment who may have criminal backgrounds. abeth Olson, Individually and as Representative of the Because the medical record is scrutinized as the first Estate of Margaret Lucille Hutchenson, Jeannie Ruiz and Joseph James Hutcheson v. Chisolm Trail Living and step in determining whether the standard of care was fol- Rehabilitation Center, Theresa Baker, RN, Linda Rhein- lowed, careful and precise documentation is essential. lander, RN, Marcellino Silva, MD et al., Caldwell Coun- This includes properly completing the minimum data set, ty (TX) District Court, Case No. 9800-363). Medical establishing appropriate plans of care based on the resi- Malpractice Verdicts, Settlements and Experts, p. 37. dent assessment protocols, and updating the care plan Laska, L. (Ed.). (2001, April). Failure to properly medicate and when the needs of the resident change. The medical monitor atrial fibrillation patient (Estate of Anna Prairie, record should clearly document the circumstances sur- deceased, v. Snow Valley Health Resources, Inc. Dr. rounding an injury, and staff should complete an incident Rakesh Marwaha MD, Du Page County (IL) Circuit report as required by facility policy. The medical records Court, Case No. 97L-659). Medical Malpractice Verdicts, should document that the staff notified the geriatrician Settlements and Experts, p. 37. when the resident’s condition warranted it, that ordered Laska, L. (Ed.). (2001, August). Failure to properly monitor and asses nursing home residents (Darla L. Sanford Fisk, Indi- treatments were carried out, and that interventions were vidually and as Representative of the estate of Jennie San- established and implemented to deal with the risk factors ford, deceased, v. William Campbell, Senior Care Consul- for falls, skin breakdown, wandering out of the facility, tants, Inc. d/b/a. Senior Care at the Lake Point, Dallas and other problems. County (TX) District Court, Case No. 99-9958-A). Med- Vigilant care is needed to protect the vulnerable popu- ical Malpractice Verdict, Settlements and Experts, p. lation of nursing homes, the majority of whom are 39.

130 JOGNN Volume 33, Number 1 Laska, L. (Ed.). (2001, September). Failure to maintain physical Jean Bowen Cochoy as the Natural Children of Anna nursing care and medical supervision of eighty-five year- Imogene Bowen v. Cara Vita Senior Care Management, old nursing home resident results in deterioration and LLC and Signal and Communications Systems of Georgia, death (Florence Rudich as PR of the Estate of Ida Revitz Inc. Fulton County (GA) Superior Court, Case No. 00- v. NME Properties, Inc. et al., Palm Beach County (FL) VS-013531). Medical Malpractice Verdicts, Settlements Circuit Court, Case No. CL 97-000234). Medical Mal- and Experts, p. 41. practice Verdicts, Settlements and Experts, p. 29. Myers, J. S. (1999). A practical guide to the defense. In P. Iyer Laska, L. (Ed.). (2001, November). Elderly non-ambulatory (Ed.), Nursing home litigation: Investigation and case woman dropped, breaking both of her legs (Estate of preparation (pp. 399-419). Tucson: Lawyers and Judges Elfrieda M. Rodden v. Jessica Edwards and Integrated Publishing. Health Services, Inc., Cleveland County (OK) District Rosenblum, J. (2000, March). What should nursing home Court Case No. CJ-1998-1323). Medical Malpractice defense counsel do when litigation arises. Long-Term Verdicts, Settlements and Experts, p. 34. Care Litigation, 2(3) 1-2. Laska, L. (Ed.). (2002b, April). Failure to monitor and secure Shannon, J., & Boxold, D. (2002). Medical malpractice: Ver- nursing home resident’s safety (Parrish Individually and as dicts, settlements and statistical analysis. Horsham, PA: PR of Estate of Morris v. Port Vancouver Convalescent LRP. Center). Medical Malpractice Verdicts, Settlements and Shuster, J. (2000). Death and dying: Palliative care for advanced Experts, p. 36. dementia. Clinics in Geriatric Medicine, 16(2), 373-386. Laska, L. (Ed.). (2002, May). Autistic patient raped by employ- Stevenson, D., & Studdert, D. (2003). The rise of nursing home ee resulting in pregnancy (Maxwell v. State, Lewis & litigation: findings from a national survey of attorneys. Clark County (MT) District Court, Case No. BDV-00- Health Affairs, 22(2), 219-229. 100). Medical Malpractice Verdicts, Settlements and U.S. General Accounting Office. (2003, July). Nursing home Experts, p. 35. quality. Washington, DC: Author. Laska, L. (Ed.). (2002a, July). 185-degree water used as sitz bath for vaginal cyst treatment (Marilyn Pease, As Special Administrator of the Estate of Elizabeth Jawor, Deceased Patricia Iyer, MSN, RN, LNCC, is president, Med League Sup- v. Brentwood North Nursing and Rehabilitation Center, port Services, Inc., a legal nurse consulting firm located in Inc., Riverwood Associates, and John D. Galbraith, Jr. Flemington, NJ. She reviews cases as an expert witness and is Cook County (IL) Circuit Court, Case No. 00 L 10804). past president of the American Association of Legal Nurse Con- Medical Malpractice Verdicts, Settlements and Experts, p. sultants. 32. Laska, L. (Ed.). (2002b, July). Rehabilitation facility patient falls while attempting to walk to bathroom unattended Address for correspondence: Patricia Iyer, MSN, RN, LNCC, (Ruth Tannenbaum v. Glen Arden Health Care). Medical Med League Support Services, Inc., 260 Route 202-31, Suite Malpractice Verdicts, Settlements and Experts, p. 32. 200, Flemington, NJ 08822. E-mail: [email protected]. Laska, L. (Ed.). (2002, November). Alzheimer’s patient wanders from nursing home and falls (Carol Thomas Bowen and

January/February 2004 JOGNN 131