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DRAFT (Last updated: January 11, 2006)

Facing the Challenges: Healthy Child Development

Level 2 Toolkit: Interdisciplinary MAINPRO CME for Family Physicians and other Primary Healthcare Providers 2006 Acknowledgements Steering Committee Patricia Mousmanis, MD (Coordinator) Ann Alsaffar, RN Wendy Burgoyne Claudette Chase, MD Niki Deller Danusia Gzik, MD Laurie C. McLeod Margaret Munro, MD

Ontario College of Family Physicians Representative Lena Salach

Authors Ann Alsaffar, RN Ed Bader, MA Sonya Bianchet Teresa Carter Patricia Fenton Diane de Camps Meschino, MD Sophie Grigoriadis, MD Sarah Landy, PhD Psych Chris Long Margaret Leslie Deana Midmer, RN, EdD Joanne Morrissey Dr. Peter Neiman Debbie Nesbitt-Munroe Alice Ordean, MD, MHSc Susan Ramsay Linda Rankin Paula Ravitz, MD Ruth Schofield William J. Watson, MD York Region Health Services Tara Zupancic

Authors, Aboriginal Chapter Marion Maar Claudette Chase Laurie C. McLeod

2 Margaret Munro

3 Aboriginal Panel Cathy Alisch, Ontario Métis Aboriginal Association Tracey Antone, Chiefs of Ontario Carmen Blais, Nishnawbe-Aski Nation Jane-Ann Burningfield, OFIFC Ida Copenance, Treaty 3 Deanna Jones-Keeshig, Independent First Nations Ulrike Komaksuulikask, Pauktuutit Inuit Women’s Association Colleen Maloney, Ontario Native Women’s Association Debra Pegamahgabow, Union of Ontario Indians Monique Raymond, Métis Nation of Ontario Lisa Tabobondung, Association of Iroquois and Allied Indians

Toolkit Reviewers Nadia Hall Amandeep Hans, MD Linda Yolles, MD CCFP Chris Long

For More Information Please Contact: Ontario College of Family Physicians 357 Bay Street, Mezzanine Level Toronto, ON M5H 2T7 Tel: 1-416-867-9646 Fax: 1-416-867-9990

Please note that programs, services and guidelines may change, therefore the reader is encouraged to consult current sources of information.

The information herein reflects the views of the authors and no official endorsement by the government of Ontario is intended or should be inferred.

4 Table of Contents Introduction

Section 1: Antenatal Assessment Antenatal Psychosocial Health Assessment: The ALPHA Forms

Section 2: Substance Use in Pregnancy Substance-using Pregnant Women Nursing Perspective: Substance-using Pregnant Women

Section 3: Post Partum Mood Disorder Interpersonal & Intrapsychic Developments of Pregnancy Perinatal Depression and Anxiety Perinatal Depression and Anxiety Summary Decision Tree for Post Partum Mood Disorder Post Partum Mood Disorders and Patient Perspectives How to Talk to New Moms with Post Partum Mood Changes What New Mothers Need from their Moms Nursing Perspective: Postpartum Depression Interpersonal Therapy for Treatment of Postpartum Depression

Section 4: Attachment Attachment Patterns and their Contribution to Child Development Nursing Perspectives: Attachment

Section 5: Developmental Issues Developmental Assessment Behavioural Manifestations of Autism in the First Year of Life Fetal Alcohol Spectrum Disorder Environmental Checklist

Section 6: Aboriginal Families Healthy Child Development for First Nations, Métis and Inuit People

Section 7: Adoption Primary Health Care and Adoption

Section 8: Fathering Role of Fathers in Child Development Information for New Dads

Section 9: Literacy Early Childhood Literacy Early Literacy Developmental Guide Promoting Literacy in the Physicians Office Additional Literacy Services

Appendix 1: ALPHA Provider Form and Self Report Appendix 2: Red Flags Developmental Reference Guide Appendix 3: Playing it Safe: Childproofing for Environmental Health

5 Introduction

The Ontario College of Family Physicians (OCFP) has provided Continuing Medical Education workshops for its members since 1994. The Peer Presenter Program has facilitated an exchange of information and expert knowledge in clinical areas for professionals such that local community values are respected. The Healthy Child Development program was initiated in response to the Early Years Report published in April 1999 by Dr. J Fraser Mustard and the Honourable Margaret McCain. A multidisciplinary steering committee was assembled to provide input for the content of the curriculum and to create an innovative educational initiative.

In October 2000, the OCFP launched the Healthy Child Development Peer Presenter Program. Over thirty family physician peer presenters were trained to deliver the core curriculum content in their home communities by partnering with local service providers such as public health nurses, speech therapists, early child educators and mental health experts. This innovative project has reached over 4000 health professionals in Ontario, across Canada and around the world. A teaching manual was created by the faculty at McMaster University that has become a core curriculum unit in the training of medical students and residents at several medical schools. In communities across Canada, there have been numerous requests for follow up advanced workshops to build on the material contained in the “Healthy Child Development: Improving the Odds” CME Toolkit Manual.

In 2004, the OCFP embarked on an ambitious challenge to provide more in depth coverage of the topics contained in the original manual while at the same time providing current up to date information that was relevant to health care professionals. A new steering committee was created to identify key areas that were relevant to family physicians, family practice nurses, public health nurses, nurse practitioners, midwives, social workers, and early childhood educators. Key expert authors were commissioned to write detailed chapters that would provide new research evidence, diagnostic pearls and management techniques to clinicians of all disciplines.

“Healthy Child Development: Facing the Challenges” is a manual that brings together information about child development, such as the role of the father, mood disorders in pregnancy, substance use in pregnancy and fetal alcohol spectrum disorder and relevant information about adoption and attachment. The important issues facing the Aboriginal people are explored in this new manual to help educate health care professionals on the history and cultural traditions of the Aboriginal community. Information about diagnostic tools as well as literacy are explored in depth.

The Ontario College of Family Physicians plans to bring this new program to various communities throughout the province by training a new set of peer presenters who will go back to their home communities and work closely with local community resources to improve service delivery to all families with children. The peer presenters will be trained in teams representing different disciplines to enhance service integration and interdisciplinary practice. This new “Facing the Challenges” manual will be provided as a resource to participants who attend these workshops.

6 Section 1: Antenatal Assessment

Antenatal Psychosocial Health Assessment: The ALPHA Forms

Author: Deana Midmer

Chapter Objectives  To outline the development of the ALPHA Forms.  To identify issues in using the ALPHA Forms.  To describe antenatal psychosocial health issues associated with adverse postpartum outcomes.  To outline interventions to deal with antenatal psychosocial health issues in order to forestall the development of problematic postpartum outcomes.

Overview Recent national guidelines in Canada and the U.S. have stressed the importance of antenatal psychosocial health assessment as a part of comprehensive obstetrical care. The ALPHA Forms were developed as tools to facilitate the collection of psychosocial data during pregnancy in a structured, logical, and time-efficient manner. The ALPHA Form is available in a provider-completed or self-report version.

Purpose of the ALPHA Forms The forms contain questions that focus on antenatal factors that have been found to be associated with problematic postpartum outcomes. These adverse outcomes include: child abuse, or child endangerment, (CA); woman abuse, or intimate partner violence, (WA); postpartum depression, or postpartum mood and anxiety disorders, (PPD); couple dysfunction (CD); and physical illness in the infant (PI).

Development Process An interdisciplinary group of obstetrical care providers (The ALPHA Group) began to meet in 1989 to explore the area of psychosocial assessment in pregnancy. We first surveyed family physicians to determine their current antenatal assessment strategies, the importance they ascribed to the adverse outcomes during the postpartum period, and their views on using a specially designed assessment tool to help them interview around these issues. Results indicated that they assessed sporadically yet attributed high importance to adverse postpartum outcomes; they displayed a keen interest in using a comprehensive tool (Carroll et al, 1994). Subsequently, we conducted a comprehensive and critical literature review to identify the antenatal factors associated with the problematic postpartum outcomes (Wilson et al, 1996).

Development of the Forms The initial version of the ALPHA Form was developed as a provider-completed form. We tested the tool in focus groups of providers from different disciplines (medicine, midwifery, nursing) and used their feedback to modify the form further (Reid et al, 1998). We also developed a Provider’s Guide (Midmer et al, 2003) and a training video

7 (Midmer, 2003). Because of feedback from pregnant women and nurses, we developed a self-report version of the form and tested it against the provider version on P.E.I. (Midmer, 2004). This study indicated that both versions of the form performed well, with equal utility, yield and provider and consumer satisfaction.

Concurrent with the ALPHA development process, the Ontario Medical Association (OMA) was revamping the Ontario Antenatal Record (OAR) it produces and disseminates. The ALPHA group presented to the OMA committee, and lobbied for more space on the OAR for psychosocial information. Consequently, the most recent iteration of the OAR has a check-off box for psychosocial issues, with headings that reflect the headings on the provider ALPHA Form. Using the ALPHA Form facilitates the completion of this section on the OAR and provides the practitioner with a rich history of the woman’s life situation. A detailed overview of the ALPHA development process has been reported elsewhere (Midmer et al, 2002).

A randomized trial was held in Ontario with family physicians, obstetricians and midwives. After agreeing to participate in the study, providers were randomized into an intervention group, who used the ALPHA form during prenatal care and a control group, who provided usual care. Results indicated that ALPHA group providers were more likely than control providers to identify psychosocial concerns (odds ratio [OR] 1.8, 95% confidence interval [CI] 1.1-3.0; p=0.02) and to rate the level of concern as "high" (OR 4.8, 95% CI1.1-20.2; p=0.03). ALPHA group providers were also more likely to detect concerns related to family violence (OR 4.8, 95% CI 1.9-12.3; p=0.001). Using the ALPHA form helped health care providers detect more psychosocial risk factors for poor postpartum outcomes, especially those related to family violence (Carroll et al, 2005).

The Different ALPHA Versions In the left column, the provider-completed ALPHA Form contains suggested questions relating to the antenatal factors associated with adverse outcomes. The adverse outcomes are abbreviated after each antenatal factor. Bold italics indicate a good association; regular print indicates a fair association. Space on the right is available for notes. There is a checklist of resources at the end of the form to facilitate the identification of appropriate interventions.

The self-report contains the same antenatal items that have been formatted either with a ranking scale or with a yes/no response with room for comments. The associations are not included on the form but are included in the provider recap sheet. This sheet also includes the checklist of resources and space for documentation.

Both versions can be found in the appendices. They are also available at http://dfcm19.med.utoronto.ca/research/alpha.

Using the Forms Interviewing Process The provider version can be completed in one session of about 20 minutes or over several prenatal visits. The woman should be advised in advance that her next appointment would be longer because of the assessment. Providers can bill for counseling/psychotherapy when appropriate. The self-report version can be given to the woman to complete at the end of a visit or when she is waiting before a visit. It is not advisable for the woman to take the form home or to complete it if she is waiting with her

8 partner. Some of the questions are very confidential in nature or relate to sensitive couple issues.

It is recommended that the form be completed after 20 weeks gestation. It is helpful to normalize the interview process by indicating that current practice is to ask all pregnant women about the psychosocial issues in their lives. Feedback from women in the pilot study and the study on P.E.I. revealed that they enjoyed the interview process and that it enhanced the provider’s understanding of their life situation.

Problem Identification The forms serve as means to identify antenatal issues that may become postpartum problems. Early problem identification and its unique situational components can lead to greater understanding and tailoring of care. Providers can collaborate with pregnant women around decision-making and the identification of the best intervention strategies.

Grouping of Factors The antenatal factors have been grouped into categories. These are: Family Factors, Maternal Factors, Substance Abuse, and Family Violence. The factors are arranged in order from less-to-more sensitive areas of inquiry. This facilitates the provider’s development of an interviewing rapport and rhythm with the pregnant woman.

Issues of Confidentiality Information elicited may be very confidential in nature. Except in the case of child abuse, which must be reported to children’s protective services, careful consideration and permission-seeking should occur before information is shared with others. It would be appropriate to share information with the other members of the health care team, including the family physician, obstetrician, pediatrician, and perinatal nursing staff.

Causality is NOT Implied The antenatal factors are only associated with problematic postpartum outcomes. If an antenatal factor is identified, the woman may not experience an adverse outcome.

Identification of Resources It is incumbent on providers to identify resources that are appropriate and available. Smaller communities may not have extensive resources, or may have resources with long waiting lists or that are some distance away, making it difficult or impossible for some women to attend. Some resources, though readily available may not be culturally appropriate.

Cultural Competence Each culture has a rich social fabric. In some cultures, disclosure of psychosocial issues is rare and discouraged, and the use of outside resources is frowned upon. In other communities, elders are often arbiters and mediators. If an antenatal factor is disclosed, it would be appropriate to ask the women, “In your culture, how is this issue managed/handled?” “Who would you tell about this problem?”

Interpreters Care must be taken when using interpreters. Because of the personal nature of the questions, it is advisable to use trained women interpreters. However, in some instances, because of the close inter-connectivity of some cultural groups, women may be reluctant to disclose sensitive issues to an interpreter she may meet in social

9 situations. Using an interpreter who speaks the woman’s language but does not share her culture would be most appropriate. If interpreters are not available, it is wise to use non-family members and avoid using the woman’s spouse or children. Before beginning the ALPHA assessment, it is appropriate if the interpreter introduces herself, normalizes her presence at the interview, and assures the woman that the discussion will be kept private and confidential, in all areas, except in the area of child abuse.

Antenatal Factors Lack of Social Support (CA, WA, PD) In its broadest sense, while being modified and reshaped by culture, ethnicity, and family of origin, social support reflects an individual’s sense of belonging and safety with respect to a caring partner, family or community. Insufficient social support during pregnancy is characterized by isolation; lack of help when dealing with daily tasks, stressful events, or crises; and lack of social, instrumental, and/or emotional support from a spouse, close friend or family member.

Women who have recently relocated, immigrated or sought refuge in a new community may experience a significant lack of social support. The separation from their country of origin or from their cultural community may compound feelings of isolation. A lack of literacy in English or French may further increase their sense of disconnection.

Recent Stressful Life Events (CA, WA, PD, PI) Stressful events are those life experiences that require some degree of adaptation with a resultant depletion of emotional reserves. These may include negative events such as financial problems, job loss, illness/death of a loved one, legal problems, and/or household or work moves. Joyful events, such as marriages in the family or promotions and/or other opportunities at work can also be stressful and require adaptation by the young family.

If over-stressed, individuals may resort to the stress-reduction behaviours modeled in their family-of-origin, such as social withdrawal, abuse of alcohol or other substances, somatization, and/or inappropriate or violent venting of anger and frustration. The movement into parenting can often cause problematic behaviours witnessed in the family of origin to begin to surface.

Couple Relationship Dysfunction (CD, PD, WA, CA) The strongest predictor of a good postnatal relationship is the quality of the relationship antenatally. How couples rate their relationship antenatally is strongly correlated with the way they rate their relationship in the first postnatal months. Most marriages or similar relationships in the postpartum period become more traditional by virtue of the woman’s increased emotional and financial dependence on her partner. Because of this shift in the spousal structure, women who hold less traditional role expectations may experience more marital dissatisfaction in the postpartum period.

Late Onset Prenatal Care (WA) If a primiparous woman does not start prenatal care until the third trimester, this is a “red flag” for concern because of the strong association with abuse by her partner. It is important to inquire why there was a delay in seeking prenatal care. It is also important to identify any cultural factors that impact on the woman’s decision to attend for care. If a woman indicates she is seeking care late because of a recent move into the

10 community, this should be explored further. Frequent moves can be part of a pattern of social abuse.

Refusal to Attend for Prenatal Education (CA) If a primiparous woman refuses to attend prenatal classes or quits prenatal classes, there is an association with child abuse. However, as with all maternal factors, it is important to look at the context of a woman’s life situation before drawing conclusions about her risk for postpartum difficulties. A woman may not attend classes because she or her partner does not speak the language in which they are given in her community. She may not choose to attend because she is single and classes are only offered to couples; because she is in a same-sex relationship and classes are heterosexual in orientation; because her partner refuses to attend or does not let her attend; or because she can not afford the class fees. However, she may also not attend because she does not want the pregnancy. It is important to explore her reasons for non-attendance.

Negative Feelings About Pregnancy After 20 Weeks (CA, WA) It is normal for a woman to experience some ambivalence regarding her pregnancy in the early weeks and it is helpful to discuss this with her and offer support. It is also important to determine a woman’s feelings later in the pregnancy, since an increased risk for child abuse is indicated by an unwanted and unaccepted pregnancy after 20 weeks. This may also be an indication of distress in her relationship with her partner, which may result in intimate partner violence. The woman may express unhappy feelings or demonstrate little interest in the pregnancy. In particular, it is important to determine a woman’s feelings about the pregnancy when she has initially decided to put the baby up for adoption and then changes her mind later in the pregnancy.

Relationship Problems with Parents (CA) If a pregnant woman describes herself as having had a poor relationship with her parents when growing up, there is an increased likelihood of child abuse in the future. For example, a woman may describe herself as having had conflict and a lack of closeness with her mother, or she may have had feelings that her parents were displeased with her as a child. She may also have felt unaccepted by her family of origin, or describe the parenting she received as cold and rejecting. If opportunities arise, it would also be important to pursue the following lines of questioning with the woman’s partner as well.

Self-Esteem Issues (CA, WA) Self-esteem can be defined as self-respect or having a favourable opinion of oneself. A woman with healthy self-esteem will feel good about herself, see herself as generally successful in life, and have secure and positive feelings about her mothering skills. Women who view themselves as unsuccessful in life often regard themselves negatively and have insecure feelings about their future mothering skills. These feelings of insecurity may be related to how they viewed their own mother’s feelings of competence and her ability as a parent. There is a good correlation between low maternal self- esteem and child abuse and a fair correlation with woman abuse.

Emotional/Psychiatric History (CA, WA, PD) During the course of prenatal care, it is important to determine whether the woman has experienced a psychiatric disorder in the past or present because of the good association with postpartum child abuse and woman abuse, and fair association with postpartum depression.

11 Specifically, the conditions that have been found to be important include bipolar affective disorders, current psychosis, chronic psychiatric problems, chronic depression, or a history of past or present psychiatric treatment.

Depression in this Pregnancy (PD) In general, 10-15% of new mothers experience a postpartum depression. However, recent studies indicate that about 10% of pregnant women are depressed. If a woman is clinically depressed during her pregnancy, she is at higher risk for a postpartum mood or anxiety disorder. In the postpartum period, if a woman presents with an acute onset of depression, discloses suicidal or infanticidal ideation or presents with manic behaviour, immediate referral to a psychiatrist is warranted for assessment and/or admission.

Other factors that increase her risk of experiencing postpartum depression include recent serious life stress, a lack of social support, couple relationship problems, a family history of depression, previous emotional and/or psychiatric problems, a previous postpartum depression, and a difficult infant. Acquainting the woman with community resources, e.g., PPD support groups or counselling services in the antenatal period, may be prudent. Discussing the signs and symptoms of postpartum mood and anxiety disorders during a visit with the woman and her partner would also be appropriate.

Alcohol Use in Pregnancy (WA, CA) Abuse of alcohol or other substances by the woman or her partner is an important antenatal risk factor, both medically and psychosocially. Alcohol is a teratogen and infants may experience Fetal Alcohol Spectrum Disorder. Psychosocial risk factors include child abuse and woman abuse. Heavy use of alcohol may be determined from self-report, a history of black-outs, need for an “eye-opener”, loss of control, dependency on alcohol, and hallucinations or delirium tremens in the abstinence phase. The use of illicit drugs can be determined by urine assay or self-report. Abuse of sedative, hypnotic or prescription narcotics can be associated with significant postpartum difficulties.

Childhood Experience of Family Violence (CA, WA) If a pregnant woman or her partner either experienced violence or witnessed violence during childhood, they are at higher risk for violence in their own family. Violent childhood experiences can include physical, emotional, and/or sexual abuse. There is a good correlation between the childhood experience of witnessing of abuse and child abuse, and a fair correlation with postpartum woman abuse.

Current of Past Woman Abuse (WA, CA, PD) Woman abuse (intimate partner violence) and child abuse (endangerment) are under- reported by patients and under-diagnosed by health care providers. Studies have shown that pregnancy is a high-risk time for woman abuse.

If a pregnant woman has experienced or is currently experiencing abuse by her partner, she is at high risk of abuse during the rest of the pregnancy and during the postpartum period. There is also fair evidence that current or past woman abuse is associated with child abuse and postpartum depression. Woman abuse can be emotional, physical, sexual, financial, spiritual and social.

12 Previous Child Abuse by Woman or Partner (CA) Child abuse or endangerment is the deliberate act of physically, sexually, or emotionally assaulting and/or violating a child’s rights or person. If either the pregnant woman or her partner has ever been officially reported to have committed any form of child abuse or if a child of theirs has ever been placed in foster care, there is a significant risk of abuse to the child the woman is carrying.

Once an antenatal factor associated with child abuse has been disclosed, the provider should further assess the significance and severity of the issue. Important questions to be considered include: Are there currently children living in the home? Do the children appear to be at any risk for injury, neglect or abuse? All health care providers and adults connected with the child and family, e.g., teachers, are bound by law to notify the appropriate child protective services in their area if they have suspicion that a child is being abused.

If a health care professional has any questions about a given situation, they can consult with children's aid society anonymously to get an opinion on that case. Contacting child protection services should not be delegated. Health care professionals are considered to have a greater burden of expectation regarding assessing for abuse, and have greater liability if they do not report.

If there is no child living in the home, but the provider is concerned about risk to the newborn, the women should be encouraged to contact her local child protection services agency to request aftercare support. Women who contact the local child protection services voluntarily feel more control and tend to view the agency as helpful rather than punitive.

Harsh Child Discipline (CA) The use of corporal punishment, such as frequent and hard spanking or the use of physical punishment of a baby prior to crawling; excessive cursing at a child; withholding food, shelter, and basic requirements for healthy living; as well as deliberate emotional rejection are examples of harsh discipline and may be considered child abuse. There is a fine line between harsh child discipline and child abuse. Further questioning is warranted in order to have a clear a picture of the home environment as possible.

In addition, there are strong cultural components to child-raising and much behaviour observed at face value may be culturally appropriate to the family. Culture is not narrowly defined as ethnicity but relates to the family culture, e.g. the culture in the “Smith Family”, and the culture of a particular group, e.g., teen parents. It is important to ask parents not only about their parenting beliefs but also about the parenting beliefs of members of their extended families who may be involved in child rearing. Another question might be: Among your friends/family, how are children usually disciplined?

Interventions Once an antenatal factor of concern has been disclosed, a provider can collaborate with a pregnant woman around the decision-making to determine the best intervention for her life situation. A list of interventions is included at the end of the provider ALPHA Form and on the recap sheet for the self-report. For obstetricians and midwives, who do not have the mandate to deal with difficult family issues, referral back to the family physician is often appropriate. Family physicians and their office nurses, or staff, are often aware of the range of resources in their community. Community health nurses can also monitor

13 the health of the mother/infant pair and the rest of the family through frequent home visits in the postpartum period.

The choice of intervention depends on several factors. First is its acceptability to the woman, e.g., in some cultures women would not go to a shelter if they are experiencing intimate partner violence. Also, the availability or lack of availability of a resource in the community, e.g., parenting courses for women who have experienced harsh parenting in their family of origin, will direct choices around interventions. One simple primary care intervention is scheduling more antenatal or postpartum visits, wherein the provider can offer continuous support and monitor the postpartum period for the development of problematic outcomes.

Conclusion The ALPHA Forms have been developed as an evidenced-based, comprehensive and time-efficient way to interview around psychosocial issues in pregnancy. Both the provider-version and the self-report version yield comparable psychosocial data. Consequently, providers now have a choice of which tool to use with their antenatal patients, helping making antenatal assessment a part of their standard antenatal care.

Much of the information in this chapter is excerpted, with permission, from the ALPHA Provider’s Guide.

References ALPHA Group: Family Physicians: Anne Biringer, June Carroll, Richard Glazier, Anthony Reid, Lynn Wilson; Psychiatrist, Donna Stewart; Anthropologist, Beverly Chalmers; Midwives, Maryn Tate, Freda Seddon; Nurse Educator/Researcher, Deana Midmer.

Carroll JC, Reid AJ, Biringer A, Midmer D, Wilson L, Permaul JA, Pugh P, Chalmers B, Seddon F, Stewart DE (2005). Effectiveness of the Antenatal Psychosocial Health Assessment (ALPHA) form in detecting psychosocial concerns: a randomized controlled trial. CMAJ. 173(3):253-9.

Carroll J, Reid A, Biringer A, Wilson L, Midmer D (1994). Psychosocial Risk Factors During Pregnancy: What do Family Physicians ask about? Canadian Family Physician, 40:1280-1290.

Midmer, D. Executive Producer (2003). Assessing Psychosocial Health in Pregnancy: Using The ALPHA Form, 2003. A Training Video for Providers. The Department of Family and Community Medicine, University of Toronto.

Midmer D, Biringer A, Carroll JC, Reid AJ, Wilson L, Stewart D, Tate M, Chalmers B (2003). A Reference Guide for Providers: The ALPHA Form - Antenatal Psychosocial Health Assessment Form. 3rd edition. Toronto: University of Toronto, Department of Family and Community Medicine.

Midmer D, Bryanton J, Brown R (2004). Assessing Antenatal Psychosocial Health Using Two Versions of the ALPHA Form. Canadian Family Physician, 50: 80-87.

14 Midmer D, Carroll J, Bryanton J, Stewart D (2002). From research to application: The development of an antenatal psychosocial health assessment tool. CJPH, 93(4): 291-6.

Reid A, Biringer A, Carroll J, Midmer D, Wilson L, Chalmers B, Stewart D (1998). Using the ALPHA Form in practice to assess antenatal psychosocial health. CMAJ, 159(6): 677-684.

Wilson L, Reid A, Midmer D, Biringer A, Carroll J, Stewart D (1996). Antenatal psychosocial risk factors associated with adverse postpartum family outcomes. CMAJ, 15: 785-791.

15 Section 2: Substance Use

Substance-using Pregnant Women

Author: Dr. Alice Ordean

Chapter Objectives  To review prevalence of substance use in pregnancy  To understand the range of consequences related to prenatal exposure to alcohol, tobacco and other drugs (ATOD)  To identify higher risk groups for ATOD use in pregnancy  To develop skills in screening women during pregnancy  To discuss how to advise women about ATOD use in pregnancy  To identify resources and services related to ATOD use and pregnancy

Epidemiology The prevalence of substance use in pregnancy is significantly underestimated in Canada. Rates of illicit drug use during pregnancy differ by locale and method of testing. Two Canadian national surveys collected exposure rates for pregnant and parenting women with children under age 5 to alcohol and tobacco (Statistics Canada, 1995a; Statistics Canada, 1995b). Alcohol use was found to be common during pregnancy with 17-25% of Canadian women reporting drinking at some point during the pregnancy. Whereas only 5% drank until becoming aware of the pregnancy, only 7-9% continued to drink throughout the entire pregnancy. Most women (>94%) reporting alcohol use during pregnancy consumed 1-2 drinks on drinking days and <3% reported 5 or more drinks per occasion. With respect to tobacco exposure, 16-23% of pregnant women in Ontario smoke with 52% smoking fewer than 10 cigarettes per day. Approximately one in five female smokers quit and another 50% cut down when planning to become pregnant or finding out about their pregnancy; however, the majority of pregnant women continue to use tobacco products despite potential adverse effects.

The demographics for alcohol use in pregnancy differ from other substance use. Women of increasing age who have higher education and income levels were more likely to report alcohol use in pregnancy than other socio-economic groups. This subgroup was also more likely to be moderate / daily drinkers and reported multiple substance use including smoking cigarettes and illicit drug use. Therefore, it is important to ask all women about substance use in pregnancy, regardless of their socio-economic status.

Rates of illicit drug use during pregnancy are difficult to ascertain. According to a survey from the British Columbia Centre of Excellence for Women’s Health, an estimated 5.5 to 6% of pregnancies involved significant substance abuse in the Vancouver Lower Mainland (BC Centre for Excellence in Women’s Health). A Toronto study used urine and hair screening of babies born in three nurseries and documented a prevalence of fetal exposure to cocaine during third trimester as 6.25% (Forman et al, 1994). Based on 80,000 births per year, this translates into 5,000 infants yearly in the Greater Toronto Area exposed to cocaine in utero. The Saskatoon Pregnancy and Health Study (SPHS)

16 documented longitudinal alcohol, tobacco and illicit drug use during pregnancy (Muhajarine et al, 1997). Approximately 7% reported psychoactive drug use (usually marijuana), 46% reported drinking alcohol with the majority having fewer than 2 drinks per week and 33% reported smoking of which 52% smoked fewer than 10 cigarettes/day. These rates appear similar to those reported for illicit drug use by US studies. A range of results have been documented from as low as 2.8% to a high of ~15% depending on the geographic location of the study population (Ebrahim and Gfroerer, 2003; Jacob et al, 1995; Bibb et al, 1995; Chasnoff et al, 1990).

The most common reasons cited for first drug use include peer acceptance, problem solving, relief of pain, coping with feelings of lack of self-worth or inadequacy, curiosity, desire for recreation and influence of drug-using spouse (Fleming and Barry 1992, Hser et al, 1987; Best Start, 2002). First drug use usually consisted of marijuana or prescription drugs which then lead to other illicit drug use. Frequently women initiated substance use as a result of traumatic life events such as physical or sexual violence, sudden physical illness or disruption in family life. In addition, many women were raised in environments of heavy use of alcohol or drugs. Consistently, a male friend who was a daily user introduced women to drugs and the majority of women received drugs as a gift or from that friend (Hser et al, 1987). For women, relationships with a male friend or a male partner can mark the beginning of drug use and a cycle of addiction.

Pregnant substance users have unique psychosocial characteristics. Typically, these women tend to be younger (20s to early 30s), minority status, separated or divorced and tend to be unemployed, on social assistance or relying on partners or criminal activity for financial income (Fleming and Barry, 1992). High-risk groups in the general population for screening include those named above, as well as, women with an unplanned and unwanted pregnancy, a history of previous child(ren) with developmental delays and a history of mood or anxiety disorders or eating disorders (Best Start, 2002).

General Approach to Care Special Issues for Substance-using Pregnant Woman

Philosophy of care  Be respectful: create a non-judgmental, honest & open environment  Obtain consent for all procedures  Offer choices, explain alternatives, honour decisions  Provide woman-centred care: focus on woman’s needs, avoid being fetocentric  Employ harm reduction approach: reduce harm related to drug use – abstinence is not only goal  Offer comprehensive care including addiction and prenatal care  Help them reconnect with health care & social systems  Advocate on behalf of pregnant substance user with child welfare authorities

Prenatal Issues  Offer prenatal care  Monitor for fetal growth and well-being  Deal with social issues such as housing, finances – connect with social worker or community agencies  Offer supervised urine drug screening to document abstinence

17  Encourage self-referral to child protection agency in third trimester  Develop a care plan for each patient outlining any special needs/situations

Intrapartum Issues  Provide adequate analgesia: opioid dependent women may require larger doses of analgesics à will not worsen addiction  Avoid a fetal scalp clip to prevent transmission of HepB/C & HIV  Plan iv access for injection drug users (recommended in case of emergency in women with poor iv access)  refer to anaesthesia for antenatal consult

Postpartum Issues  Plan disposition of baby prior to delivery with patient and social worker: rooming- in versus nursery depending on discharge plans and flight risk  Consider urine drug screen on baby using a bag sample  Offer Hepatitis A & B vaccines for Hepatitis C positive mothers  Weekly follow-up for baby and mom to assess coping skills, mood and neonatal growth and to monitor for relapse to drug use

Definitions Substance Abuse (DSM IV Criteria) A. A maladaptive pattern of substance use leading to clinically significant impairment or distress, as manifested by one (or more) of the following, occurring within a 12- month period: 1. Recurrent substance use resulting in a failure to fulfill major role obligations at work, school or home 2. Recurrent substance use in situations in which it is physically hazardous 3. Recurrent substance-related legal problems 4. Continued substance use despite having persistent or recurrent social or interpersonal problems caused or exacerbated by the effects of the substance B. The symptoms have never met the criteria for substance dependence for this class of substance.

Substance Dependence (DSM IV Criteria) A maladaptive pattern of substance use leading to clinically significant impairment or distress, as manifested by three (or more) of the following, occurring at any time in the same 12-month period: 1. Tolerance, as defined by either of the following: a) the need for markedly increased amounts of the substance to achieve intoxication or desired effect b) markedly diminished effect with continued use of the same substance amount 2. Withdrawal, as manifested by either of the following: a) the characteristic withdrawal symptoms b) the same substance is taken to relieve or avoid withdrawal symptoms 3. Substance is taken in larger amounts or over a longer period than intended 4. Persistent desire or unsuccessful efforts to cut down or control substance use 5. A great deal of time is spent on activities necessary to obtain, use or recover from effects of substance

18 6. Important social, occupational or recreational activities given up or reduced due to substance use 7. Substance use is continued despite knowledge of having persistent/recurrent physical or psychological problems likely caused or exacerbated by substance

Reference: American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders. Fourth edition, 1994.

Mary’s Case (Alcohol) Mary is a married 28 year old G1P0 who comes in for confirmation of her pregnancy. She and her husband of five years have been trying to get pregnant for 1 year. When questioned about lifestyle habits, Mary admits to drinking once per week with friends from work, but prefers “mild” drinks like coolers. In the evening, she also has a few drinks at home with family. Mary wants to know if her alcohol use may harm her baby.

Q: How would you screen for problematic alcohol use? All pregnant women should be screened for tobacco, alcohol and other drug use in pregnancy as indicated by the Ontario Antenatal Record. Use general screening questions and then proceed to a more detailed assessment based on positive responses. Enquire about all potential substances including alcohol, cigarettes, prescription medications and illicit drugs. It is also important to determine the context of use and the potential for change in terms of triggers and motivational factors.

With respect to alcohol, a general screening question is “How much alcohol do you drink?”. If the woman denies any alcohol use, reinforce that abstinence from alcohol is safest during pregnancy and repeat screening at another point in the pregnancy. If there is a positive response to this question, proceed to ask about quantity and frequency by using the following questions: “How many drinks do you have in a usual day?” and “In a typical week, on how many days do you drink?”. Also, ask about binge episodes by using the question “What is most number of drinks that you have had in any one day in the past month?”.

Follow-up these questions with a brief alcohol-screening questionnaire, the T-ACE or the TWEAK, designed to identify pregnant women at risk for alcohol problems (Russell, 1994). Both questionnaires have demonstrated a high sensitivity in screening obstetric populations for periconceptual risk drinking which has been defined as ~2 drinks per day (Russell et al, 1996).

The T-ACE has a sensitivity of 70% and a specificity of 85% in predicting risk drinking in pregnant women (Russell, 1994; Sokol et al, 1989; Chang et al, 1998). An overall score of 2 or more points is considered positive evidence of risk drinking.

T-ACE Questionnaire T-ACE Question Score T TOLERANCE 2: more than 2 drinks How many drinks does it take to make you feel high? 0: 2 drinks or less A ANNOYANCE 1: Yes Have people annoyed you by criticizing your 0: No drinking?

19 C CUT DOWN 1: Yes Have you felt you ought to cut down on your 0: No drinking? E EYE OPENER 1: Yes Have you ever had a drink first thing in the morning 0: No to steady your nerves or get rid of a hangover?

The TWEAK is another screening questionnaire for obstetrical patients to identify problem drinking. This questionnaire is more sensitive (79%), but less specific (83%) than the T-ACE in screening for risk drinking during pregnancy (Russell, 1994). A total score of 3 or more points identifies a woman who is a risk drinker.

TWEAK Questionnaire TWEAK Question Score T TOLERANCE 3 or more drinks, score 2 How many drinks does it take before you begin to feel the first effects of alcohol? W WORRY Yes, score 2 Have close friends or relatives worried or complained about your drinking in the past year? E EYE-OPENER Yes, score 1 Do you sometimes take a drink in the morning when you first get up? A AMNESIA Yes, score 1 Has a friend or family member ever told you about things you said or did while you were drinking that you could not remember? K (C) CUT-DOWN Yes, score 1 Do you sometimes feel the need to cut down on your drinking?

Q: What areas of inquiry would be included in a complete substance use assessment? If women screen positive for being at risk for alcohol use, a more thorough and detailed assessment is recommended.

A full history should be elicited relating to the following areas:  Complete drug history: name of drug, amount, frequency, duration, route(s), last use, needle sharing/IDU, withdrawal symptoms  Consequences of drug use: medical, psychiatric, social  Previous tx programs, mutual aid groups attendance  Medical history: HIV, Hepatitis B & C, STDs (Chlamydia, Gonorrhea, Herpes)  Chronic medical conditions: pain syndromes  Medications, allergies  Psychiatric history: eating disorders, sexual abuse & mood disorders  Obstetrical history: LMP, cycle regularity, past deliveries & complications  Social history: family situation (partner & no. of children), housing, nutrition, legal (current charges & court dates), finances, domestic violence & child abuse (safety)

20  FIFE: feelings, impressions/ideas, functioning, expectations about pregnancy & drug use

Physical examination should be focused on signs of substance induced disorders (such as intoxication or withdrawal) and appropriate obstetrical manoeuvres:  General appearance, hygiene, level of consciousness, activity level  Vital signs (BP, HR), Weight  CVS & Respiratory exam: murmur  Abdominal exam: SFH, hepatosplenomegaly, signs of chronic liver disease  Gynecological exam: uterus size, Pap & swabs, FHR  Skin: needlemarks, cellulitis, bruises, signs of chronic liver disease

Investigations include bloodwork, urine and ultrasound testing. 1. BLOODWORK:  Quantitative serum B-hcg  Routine prenatal bloodwork  Offer screening for HIV, Hepatitis C, Liver enzymes (ALT, AST) 2. URINE drug screen* (obtain informed consent) 3. ULTRASOUND: for dates and anatomy

Q: How much alcohol is safe for her pregnancy? There is NO confirmed safe limit for alcohol use in pregnancy; therefore, no alcohol is the safest choice. There is no dose-response relationship between the amount of prenatal alcohol consumed and the extent of damage in the infant (Koren et al, 2003).

Q: How would you counsel her if she only drank a small amount of alcohol before realizing that she was pregnant? A meta-analysis failed to show any adverse fetal effects after mild social drinking (defined as alcohol intake of greater than 2 drinks per week and up to 2 drinks per day) (Polygenis et al, 1998). Similarly, moderate alcohol consumption before realizing that conception had occurred showed no increased risk of spontaneous abortion, stillbirth or premature birth (Makarechian et al, 1998). Women who have a history of social drinking prior to finding out about the pregnancy can be reassured and counseled to abstain for the duration of the pregnancy.

Q: What are the risks of alcohol exposure to her fetus? Alcohol is a documented teratogen with recognized deficits with heavy daily drinking or binge drinking. Prenatal exposure to alcohol results in a continuum of harm. 1. Increased risk of spontaneous abortion (Windham et al, 1997) and stillbirth (Kesmodel et al, 2002) 2. Fetal alcohol spectrum disorder (FASD): umbrella term describing range of effects (Chudley et al, 2005).  fetal alcohol syndrome (FAS): classic triad of growth retardation, characteristic facial dysmorphology and central nervous system neurodevelopmental abnormalities  partial FAS: only some of the characteristic facial anomalies plus growth retardation or central nervous system neurodevelopmental abnormalities or behavioural/cognitive abnormalities  alcohol-related birth defects (ARBD): congenital facial, cardiac, skeletal, renal, ocular, auditory and other malformations and dysplasias

21  alcohol-related neurodevelopmental disorder (ARND): central nervous system neurodevelopmental abnormalities or complex pattern of behavioural/cognitive abnormalities or both

Q: How would you assist her in addressing her alcohol use in pregnancy? Advise and assist pregnant women to address their alcohol use during pregnancy. A variety of brief interventions have been shown to be effective in modifying alcohol use (Chang et al, 1999; Reynolds et al, 2002).

If the pregnant woman admits to drinking alcohol but not at risk drinking levels:  Advise patient to abstain from drinking.  Assist by providing referral to appropriate resources and continued follow-up & support.

If the pregnant woman indicates “at risk drinking”:  Assess level of motivation to change drinking behaviour and readiness to change by asking about importance and confidence to make a change  Offer intervention(s) depending on stage of change and level of alcohol dependence  Deal with barriers to attending treatment: food, housing, family, safety  Arrange referral to appropriate programs and services

Q: How would you manage alcohol withdrawal in pregnancy? Alcohol withdrawal in pregnancy requires medical detoxification. Symptoms may begin within 6 hours of the last drink and may include autonomic hyperactivity, sweating, nausea, vomiting, tremors, anxiety and seizures. Most signs and symptoms resolve by 72 hours.

Medical care should consist of inpatient admission to monitor vital signs and fetal well- being. All women should receive folate 5mg once daily and thiamine 100mg im x 1 day then po x 3 days. A benzodiazepine protocol is used to treat withdrawal symptoms as follows: lorazepam 1-2mg po/sl every two to four hours according to withdrawal severity. The medication can be stopped once symptoms decrease – no tapering of lorazepam is required (Brands, 2000).

Q: What additional treatment is required for dealing with “at risk drinking” or alcohol dependence? Women need assistance with continuing abstinence during pregnancy. Consider making a referral to counseling or treatment programs. See list of resources for examples of local programs.

Q: How would you manage her during labour and delivery if she continued to drink throughout her pregnancy? If the patient is intoxicated at the time of labour and delivery, monitor for withdrawal. If withdrawal symptoms appear, use short acting benzodiazepines such as lorazepam 1- 2mg sl/po q1h until symptoms decrease, monitor for fetal distress and ensure pediatrics is present at delivery (Brands, 2000).

22 Note: 1 standard drink = 12 oz beer 12 oz cooler 5 oz wine 1.5 oz hard liquor

Cathy’s Case (Opiates) Cathy is a 32 year old, G2P1, who presents for her first prenatal visit at 10 weeks gestational age. She is married with one year old son. She admits to using Percocet for a variety of musculoskeletal symptoms that started after her first pregnancy. Initially, the medication was prescribed by her family physician; however, more recently, she has been taking pills supplied by her husband. Her husband also has a long history of Percocet abuse. She is worried about her pregnancy and wants to stop taking Percocet.

Q: What additional details would you ask about on history? There is no simple screening tool similar to the T-ACE or TWEAK questionnaires. A more detailed assessment is required when opioid dependence is suspected. The assessment includes a thorough history, corroborating evidence from spouse, family members or previous physician and a review of patient behaviours that might indicate dependence. All women should be questioned about current or past history of alcohol, tobacco, benzodiazepine and other drug use.

Components of the history should include:  Substance use history: quantity and frequency, binge episodes, type of opioids preferred (short- or long-acting), withdrawal symptoms, pleasurable psychoactive effects, drug-seeking behaviours: emergency visits, early refills, double doctoring  Use of alcohol, tobacco, other prescription medications, over-the-counter analgesics, sedatives, other illicit drugs  Chronic pain: diagnosis, response to pain rating scale (dramatic or inconsistent)  Functional status  Obstetrical history: previous pregnancy, outcome  Medical history: hepatitis B, C & HIV  Psychiatric history: depression, anxiety, eating disorders  History of sexual, physical and/or emotional abuse  Psychosocial assessment: current living arrangements, partner, vocational status, partner’s history of substance use, nutritional assessment, parenting arrangements, safety of children in home

Q: What are your concerns about her Percocet use? Opioid dependence during pregnancy has been associated with numerous adverse fetal outcomes. Poor neonatal outcomes such as intrauterine growth retardation, lower birth weight and preterm premature rupture of membranes are secondary to the drug itself, as well as, secondary to poor nutrition and inadequate prenatal care (Kaltenback et al, 1998; Hulse et al, 1997; Brown et al, 1998). Opioid withdrawal can trigger uterine contractions leading to an increased risk of spontaneous abortion in the first trimester, premature labour in the third trimester and fetal distress and stillbirth at the time of delivery. Maternal complications include pre-eclampsia and antenatal bleeding.

Q: What is the recommended management plan?

23 The standard of care for opioid dependence in pregnancy is methadone maintenance treatment. Methadone is a long-acting opioid with a half-life of 24 to 36 hours and thus, women on methadone are less likely to experience withdrawal symptoms and drug cravings. Methadone-maintained pregnancies also have reduced obstetrical complications (Hoegerman and Schnoll, 1991; Suffet and Brotman, 1984; Behnke and Davis Eyler, 1993).

Methadone detoxification is not advised prior to week 14 or after week 32 because of potential obstetrical complications. If attempted, a tapered cessation of methadone is safest during the second trimester when the risk of spontaneous abortion or premature labour is lowest. Based on preliminary studies, no adverse fetal outcomes were documented with methadone detoxification during pregnancy; however, tapering has been associated with high risk of maternal relapse (Dashe et al, 1998; Maas et al, 1990).

Q: What is the risk of methadone maintenance therapy in pregnancy? The most significant effect of methadone exposure in pregnancy is neonatal abstinence syndrome (NAS) (Kaltenback et al, 1998; Kaltenbach and Finnegan, 1986). This withdrawal state is characterized by irritability and sleep disturbances, tremors, poor feeding, vomiting, sneezing, yawning, fever and occasionally seizures. Approximately 60-80% of infants experience NAS, however, only a small percentage require morphine treatment for significant withdrawal symptoms. There is currently no evidence of any long-term consequences associated with methadone use in pregnancy. However, there is an increased occurrence of strabismus in infants born to women receiving methadone (Gill et al, 2003).

Q: How would you deal with her social situation? Given the history of opioid dependence in both the patient and her husband, a discussion should occur at this visit regarding the legal obligation as a health care professional to report any child safety concerns to the appropriate child protection agency. The need for protection varies by province or territory. Consult local authorities to clarify specific responsibilities regarding the definition of risk as it applies to substance-using parents and the responsibility to make such referrals.

 Inform the patient of your legal obligation to report concerns about child safety: “anyone who has reasonable grounds to suspect that a child may be in need of protection must make a report directly to child protection services”  Report if you have any concerns or suspicions about drug use affecting ability of mother to care for child  In Canada, fetus is not recognized as a “person of statute”  Not legally obligated to report until baby is born, early reporting may allow for better risk assessment and discharge planning  Encourage women to self-report prenatally - increases self-efficacy, dignity & stability while promoting open and informed decision-making in conjunction with child protection authorities  If patient chooses not to self-report, obtain consent and speak to child protection services in presence of patient

Joan’s Case (Polysubstance Use – Cocaine, Marijuana, Tobacco) Joan is a 26 year old, G2P1, who presents at 8 weeks GA. She is currently living with her common-law partner and 3 year old son in an apartment (in her parents’ home). Her

24 last pregnancy was complicated by crack cocaine use which she stopped in her second trimester. Child protection services have been involved with the family and have continued to monitor her progress. She is struggling with her abstinence and had a couple of relapses 3 months ago. She also smokes marijuana occasionally and a pack of cigarettes daily to help her relax. She really wants to quit smoking crack because she is concerned about the health of her pregnancy.

Q: What other screening questions would you ask? All women should be asked about alcohol, tobacco and other drug use. A complete assessment (as described above) should be performed.

Q: What are the effects of her substance use? It is difficult to separate toxic effects of a particular substance from other factors such as poor nutrition, lack of prenatal care, inadequate housing and lack of stimulation in the environment. In addition, concurrent use of several substances makes it hard to isolate effects of one particular substance. Educate the parent about potential fetal and maternal effects of prenatal drug exposure (Chang, 2004).

Fetal and Maternal Effects of Drug Use Drug Fetal & neonatal effects Maternal effects exposure Alcohol Spontaneous abortion Preeclampsia Fetal alcohol spectrum disorder Anemia Opiates Intrauterine growth retardation (IUGR): Preeclampsia lower birth weight Placental abruption Spontaneous abortion Premature rupture of Prematurity, stillbirth membranes (PROM) Fetal distress Neonatal: neonatal opioid withdrawal, sudden infant death syndrome (SIDS) Methadone Neonatal abstinence syndrome None Neonatal: strabismus Benzodiazepines Cleft palate Insomnia, anxiety Cocaine Spontaneous abortion Placental abruption IUGR (lower birth weight, length & head Placenta previa circumference) PROM Prematurity, stillbirth Preeclampsia Intrauterine cerebral infarction Neonatal: neurodevelopmental effects (expressive language & verbal comprehension delay, behaviour problems) Marijuana Possible premature delivery in heavy users Anxiety, depression Neonatal: neurodevelopmental effects Smoking Spontaneous abortion Placental abruption IUGR: lower birth weight by 200g Placenta previa Prematurity, increased perinatal mortality PROM rate Neonatal: SIDS, Possible behavioural problems Second-hand smoke: SIDS risk, increased

25 risk of bronchitis, pneumonia, otitis media, asthma, allergies

Q: How would you manage her drug use? 1. ASSIST: Offer comprehensive prenatal care – can improve maternal and neonatal complications of substance abuse (Broekhuizen et al, 1992) 2. ASSIST: Manage withdrawal symptoms - treatment based on specific substance used (Brands, 2000)  Cocaine withdrawal: symptoms primarily psychological (insomnia, psychomotor agitation/retardation, dysphoric mood, increased appetite); no specific therapy  Marijuana withdrawal: varies from mild symptoms (insomnia, anorexia) which resolve within days to more severe symptoms (anxiety, irritability) which may continue for weeks; no specific therapy indicated  Nicotine withdrawal: symptoms worse in first 3-4 days, may persist for week or longer; typical symptoms: irritability, restlessness, anxiety, insomnia, fatigue, lack of concentration; consider nicotine replacement therapy (gum, patch) 3. ASSIST: Consider pharmacological maintenance options for relapse prevention  Eg. nicotine replacement therapy in addition to behavioural interventions for smoking cessation, methadone maintenance therapy for opioid dependence 4. ADVISE: Encourage treatment program attendance– inpatient (preferred if socially unstable) versus outpatient and ongoing counseling 5. ADVISE: Educate about fetal & maternal effects 6. ADVISE: Counsel about risks of Hepatitis C 7. ADVISE: Schedule frequent follow-up visits to monitor maternal and fetal status and to provide support

Q: What is the role of urine drug screenings (UDS)?  Valuable for monitoring treatment progress & enhancing motivation for abstinence  UDS should be supervised and carefully labelled; if there are legal implications for results of UDS, ensure chain of custody of specimen between woman providing sample and laboratory testing  An unexpected positive result requires confirmatory testing by a second method and discussion with the woman (Gourlay et al, 2002)  Mother should give consent before her urine sample is tested  Mother should be informed of neonatal urine à however, if maternal drug use is suspected, maternal consent for neonatal drug testing is not required if test is ordered by child welfare authorities taking on guardianship responsibilities for the child

Q: How would you counsel this woman regarding her risk for hepatitis C? How would you manage this woman if she is hepatitis C antibody positive?  Counsel all patients about risk factors for hepatitis C including: injection drug use, sharing of drug paraphernalia, sexual transmission, blood product recipients  Offer screening to all pregnant substance users at first visit  Screen for hepatitis A, B and C  Screening with anti-HCV for hepatitis C does not distinguish between acute, chronic or resolved infection

26  For high-risk women, repeat testing every 3 months and/or in third trimester  Monitor liver enzymes if anti-HCV positive and order HCV RNA if ALT is normal to confirm acute versus chronic infection  Counsel about risk of vertical transmission of ~5%; exact route unknown; babies should be tested to determine hepatitis C status  Mode of delivery and breastfeeding have not been documented as risk factors for vertical transmission (Boucher and Gruslin, 2000)

Treatment Resources Program Contact Information General Information: ProjectCREATE www.addictionmedicine.ca Motherisk www.motherisk.org General Information Programs: The Ontario Drug and Alcohol Registry of www.dart.on.ca Treatment (DART) Metro Addiction Assessment Referral www.camh.net Service (MAARS) link through CAMH [link through CAMH] Centre for Addiction and Mental Health www.camh.net 416-535-8501 Pregnancy Programs: Toronto Centre for Substance Use in 416-530-6860 Pregnancy (T-CUP), St. Joseph’s Health Centre Motherisk Alcohol and Substance Use in 1-877-327-4636 Pregnancy Help Line Breaking the Cycle www.breakingthecycle.ca 416-364-7373 Jean Tweed Centre www.jeantweed.com Renascent Treatment Programs, Women 416-598-2549 Smoking Cessation Resources: Motherisk www.motherisk.org Smokers’ Helpline 1-877-513-5333 CAMH Nicotine Dependence Clinic 416-535-8501 PREGNETS www.pregnets.org The Stop Smoking Center www.stopsmokingcenter.net Quit for Life Clinic, St. Joseph’s Health 416-530-6860 Centre Fetal Alcohol Syndrome Information: Directory of FAS/FAE Information and www.ccsa.ca/fasis/fasall.htm Support Services in Canada, Ottawa, Canada, prepared by the Canadian Centre on Substance Abuse (CCSA), May 2002 FASD Information and Consultation 1-800-559-4514 (toll-free in Canada) Service (for information about FASD and www.ccsa.ca/fasgen.htm substance use during pregnancy) email: [email protected]

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30 Nursing Perspective: Substance-using Pregnant Women

Author: Ruth Schofield

Chapter Objectives  To review prevalence of Substance Use in pregnancy  To understand the range of consequences related to prenatal exposure to alcohol, tobacco and other drugs (ATOD)  To identify higher risk groups

Public Health Nursing Role and Public Health Practitioners

Population Based Approaches (Under the Ministry of Health and Long Term Care, Public Health Division, Mandatory Core program and Services Guidelines)  Participate in Substance Abuse Prevention Community Coalitions with prevention and treatment services  Conduct community wide campaigns including various medium of communication i.e. media, internet, posters, newspaper  Provide health education resources in schools related to substance abuse prevention

Family Approaches - Healthy Babies, Healthy Children (HBHC) program  Identify women through prenatal classes and completion of the Parkyn screening tool conducted in hospital  Conduct a family assessment and refer to the HBHC home visiting program by a public health nurse and family home visitor  Offer support and education, referral and links to various community resources as required such as parenting resources, substance use counselling and Children’s Aid Societies if children are in need of protection.

31 Section 3: Post Partum Mood Disorder Interpersonal & Intrapsychic Developments of Pregnancy: Relevance for Perinatal Mood & Anxiety Disorders and for Childhood Attachment

Author: Diane de Camps Meschino MD

In this chapter, we view pregnancy as a psychological developmental stage along the life cycle continuum. Development during pregnancy may be described as crisis-like, due to the immense changes a woman experiences in a relatively short time period. This creates both an opportunity for personal growth and a potential need for professional intervention. The maturation initiated by pregnancy is essential for healthy mother-baby interactions and is the basis of effective parenting. The following outline forms a framework upon which to pursue perinatal therapy or counselling.

Pregnancy as developmental stage Pregnancy (and parenthood) may be seen as a developmental phase, which provides an opportunity for psychological growth (Leifer, 1977). A normal pregnancy involves a maturational ‘crisis’, which resolves only after the child is born. This ‘crisis’ is seen universally in normal pregnancy and is observed in women with no history of symptoms or psychopathology (Bibring, 1959). Its purpose is to evolve in the mother a greater level of psychological maturity leading to a more secure foundation, an expanded organization of self, a superior comprehension of boundaries and autonomy. Pregnancy should endow one with all that is required to be an effective, competent, flexible and caring parent capable of providing the opportunity for secure attachment with the child. It has often been compared to adolescence in its degree of emotional lability and growth (Offerman-Zuckerberg, 1980). Women may not be aware of these changes or may have increased intrapsychic conflict and distress.

Transitional crisis as adaptive and normal Psychological regression during pregnancy is inevitable and forces the parallel re- examination of parent-child relations (mother as past child and mother of future child) (Pines, 1982). During this role transition to motherhood, unresolved issues surface, relating to the developmental phase of psychological separation & individuation from the pregnant mother’s own primary objects (parents). Successful resolution of this phase, to become one’s own master and speak with one’s own voice, are psychological achievements that are to some extent based on the security/insecurity of both primary (parents) and current attachments (partner, friends, parents).

Attachment (see attachment chapter) plays an essential role in emotional & social development and is defined as “any form of behaviour that results in a person attaining or retaining proximity to some other differentiated and preferred individual” (Bowlby, 1977). It regulates proximity and exploratory behaviour and is prominently manifest during childhood, threatening situations (fear, distress, illness) and transition

32 (pregnancy). Attachment style (secure vs. insecure) is determined by a combination of parenting style, childhood temperament and environmental exigencies. The degree of one’s personal security will be a significant determinant of future relationship and parenting styles. Thus the re-emergence of more or less quiescent issues may be seen as an adaptive response in preparation for the new role. This psychological upheaval necessitates a change in sense of self and relationships to significant others. Ideally, it enhances and serves to “test one’s capacity for intimate attachment over time” (Offerman-Zuckerburg, 1980), with important implications for the marital partnership and the bond with the pending child.

In pregnancy, it is normal to experience acute feelings of joy, anticipation, fear, and ambivalence. The pregnant woman must redefine identity as a mother while developing a sense of her future child. At the same time, she is re-evaluating and re-working her relationship to her body, partner, mother, father, and culture (Ballou, c1978). Women who have not achieved sufficient maturity (youth or psychological instability) or for whom external factors are threatening (finances, occupation, support, health) may experience more ambivalence and anxiety (Blum, 1980). Those with secure attachments have a higher threshold for psychiatric symptoms due to a superior foundation of internal security and social support, while those with insecure attachments are more vulnerable to conflict, loss, and transition.

Opportunity for Psychotherapy Due to the phenomenal intrapsychic upheaval, pregnancy presents the opportunity for personal growth and integration and also for the surfacing of unresolved conflicts and attachment difficulties. Pregnant women display enhanced levels of responsiveness and psychological receptivity to therapy. The prospect of children is an extremely positive motivator (Offerman-Zuckerberg, 1980). Thus there is potential for rapid therapeutic work. Due to the emergence of psychological conflicts and issues, this is an extraordinary opportunity for psychotherapy and for preventive intervention with respect to the future child. The following sections outline the developmental tasks presented during pregnancy as defined in terms of significant relationships. These divisions create an organizational model for history gathering, comprehension, therapy and education. This format corresponds particularly well with the process of taking an interpersonal inventory in the process of Interpersonal Psychotherapy (see IPT chapter).

Re-evaluation of Significant Relationships

I. Self/Baby Self Pregnant women must develop an openness to becoming mothers with care-giving and nurturant responsibilities. They must possess or acquire a tolerance of negative affect and ambivalence, which are normal components of pregnancy, delivery and child rearing. Anxious mothers often express concerns about their capacity to be mothers (Offerman-Zuckerberg, 1980). Mothers-to-be wrestle with the question “Who will I be?” in the context of relating to their baby’s significant needs and a life-long commitment to motherhood. They must form a stable representation of themselves, which is separate and maintained even when the need to care for children requires great personal sacrifice.

33 Baby The pregnant woman must be able to conceptualize her baby as both part of her and separate from her. If unable to imagine her baby she may fail to attach, be unemotional and fail to plan for the baby’s care. Some pregnant women, unable to comprehend the baby as part of themselves, may be unable to tolerate sharing their body with another; therefore, they may see the baby as a foreign entity, threatening to control and destroy their life and body. Other pregnant mothers may find the union so gratifying that they have difficulty imagining their baby as separate from themselves. The baby becomes an extension of self or emblematic of a corrective initiative that leads to difficulty in ‘letting go’ as the baby separates at birth and begins the journey along the road to individuation.

Body The pregnant woman must resolve many issues with her own body, as she changes temporarily, or possibly permanently, to meet the needs of her baby. Women whose self-image or relationship relies too heavily on appearance or attractiveness are challenged to transcend this singular definition of self. Women with eating disorders, whose self definition or emotional grounding depends on control of body shape and weight, may experience an exacerbation of symptoms instigated by entirely normal physical changes during pregnancy.

Loss of personal control and esteem during labour and delivery produce anxiety resulting from the confrontation of helplessness, loss of privacy, pain and mortality (Lederman, c1996). Women who have a previous history of helplessness in traumatic situations (interpersonal victimization, illness) may experience severe psychological difficulties in responding to this developmental task. Others who deny the possibility of morbidity/mortality may be so focused on an idealized experience of delivery that the potential needs of the baby become secondary i.e. pursuing recommended intervention or proximity to safety.

II. The Mother’s Mother It is normal and healthy for a pregnant woman to return to experiences of her own mother, reconciling conflicts, dependency themes and ambivalence regarding the person of her own mother and her parental values and style. The pregnant woman must transform herself from the child of her mother to a mother herself. If her experience of her mother is ‘good enough’ (Winnecot, 1989), she will identify with her mother, recognizing the positive features of her mother’s personality and parenting efforts (Lederman, c1996). She should develop a mature understanding and appreciation of her mother’s struggles, successes and failures. She will resolve any lingering conflicts or child-like dependence, eventually forming a complete peer relationship. The pregnant woman must come to accept her own healthy dependency needs in order to accept the dependency needs of her child. The developmental objective is the establishment and actualization of self-determined maternal values and behaviour, which may be very distinct from those of one’s parents.

Separation and autonomy from one’s own parents, requires a safe, secure attachment. If this development is unfinished, its’ completion is sometimes possible via psychotherapy or maturation derived through marital union. Without a “good enough” maternal role model (Winnecot et al, 1989) or attachment, this transition may pose the greatest of all difficulties. The idea of becoming a mother may remind a woman of her own experience of her mother’s mis-attunement, unavailability, or abuse, and may cause overwhelming distress that diminishes the opportunity for psychological work.

34 III. The Mother’s Father The pregnant woman’s relationship with her father is also altered such that she expects to be accorded the peer approval and adult status of her own mother. It is during this transition that she has the opportunity to resolve issues of rivalry with her mother with respect to her father and to develop a stable and mature representation of her father (Offerman-Zuckerberg, 1980). Her view should integrate good and disagreeable qualities. She should be able to establish a position from which she can tolerate or manage his interpersonal shortcomings without feeling threatened.

IV. The Partner Partners face an equally significant developmental task in the transition of role and identity. The partner can have a great impact on the woman’s adaptation to pregnancy (Lederman, 1996). Issues with respect to the partner’s father will arise for re-evaluation. The partner must be able to provide support by asserting and reinforcing boundaries and building cohesion around the new family. The partner may need to challenge their ambivalence about changes in the pregnant woman’s dependency needs or sense of her as a sexual partner. They may feel excluded from attention and focus, and experience a threat to their identity and importance.

The pregnant woman’s sense of her partner must also be re-formed based on her assessment of them as a developing parent and their attention to, and understanding of her needs. Pregnant women who are able to communicate their needs to, and derive support from their partners are more likely to be able to work through their dependency needs enhancing separation-individuation from their own mothers. This relies on both her capacity to ask and her partner’s capacity to provide. Partners may pursue their usual life unaltered, in spite of the pregnant woman’s changing needs, either due to oblivion of the evolving needs of the relationship or anxiety about what the partner needs to do.

Hostility toward the impregnating male may ensue, as women feel unsupported confronting the physical and psychological burden of pregnancy. Furthermore, there may be significant confusion regarding role division and expectations, as current family units are less defined than traditional families. New mothers often expect their partner to provide emotional and instrumental support during pregnancy and postpartum. In the past, members of the extended family and other women in the community often provided for these functions. Many partners are unaware of the new mother’s expectations and proceed with very independent ideas of providing for the family, correspondent with experiences of their own fathers. This is a frequent source of conflict between partners and may become an opportunity for resolution or impasse.

Psychological Adaptation and Trimester Fulfillment of developmental tasks is dependent on the stage of pregnancy. In the first trimester, the baby is still an abstraction and women may or may not experience attachment to their developing fetus. During the second trimester when the pregnancy begins to physically show, the pregnant woman must resolve her emotions concerning body shape and issues of control. With ultrasound and quickening (4-5 months) the baby becomes more real and parents imagine their baby with both joy and attachment while resolving their ambivalence. During the third trimester the pregnant woman may exhibit increasing dependency due to issues of physical transformation, discomfort, mobility and sleep. She must prepare for childbirth with it attendant joy, pain and fear of mortality.

35 She will anticipate the baby with increasing fantasy turning more attention inward (primary maternal preoccupation) (Winnecot, 1989). ‘Nesting’, the refocusing of thought, feeling and action occurs during pregnancy, not after birth (Offerman-Zuckerberg, 1980). Some cultures believe it is unwise to instrumentally prepare for the baby’s arrival and this must not be misinterpreted as detachment.

The warning signs listed below are based on the extent of signs and symptoms rather than their presence or absence.

Warning Signs for Poor Psychological Adaptation

• Excessive worries/fears regarding damage to self during pregnancy • Excessive worries about future child, marriage, or parents • Increased marital or parental conflict • Failure to attach to baby by third trimester • Unusual fantasies or thoughts (feeling out of control) • Acute and prolonged separation anxiety • Loss of emotional responsiveness • Mood swings • Lack of ‘primary maternal preoccupation’/nest building • Intolerance of physical complaints

Adapted from Offerman-Zuckerberg, 1980

Sociocultural factors Despite the enhanced choice afforded over pregnancy through the advent of birth control, 50% of pregnancies are not planned (Martin et al, 2002). Clinical observation reveals that women still note the negative impact of having children, including: increased workload, physical exhaustion, social isolation, and not living up to societal stereotype. Cross culturally, mothers are primary caregivers, a role which impacts their subsequent choices and their physical and emotional health. Many mothers continue to work outside of the home but also increase their housework load. Furthermore, there are many cultural expectations and traditions incumbent upon new parents with the birth of a child that affect their relationships and responsibilities. These factors require case specific evaluation and can generate great conflict within families, especially when they catch the couple or individual unaware.

Stressful life events, (Paykel et al, 1980; Bernazzani et al, 1997a) together with the quality and support of marital relationships (Cowan & Cowen, 1988; Bernazzani et al, 1997b) are important factors in adaptation to pregnancy. Recent life adversity, including life events and chronic stressors, has been confirmed to contribute to the development of poor adaptation and depression in pregnancy (Bernazzani et al, 2004). Adversity was measured using the following domains: marital/partner relationship; reproduction (medical and health complications threatening fetus/pregnancy) and parenthood (problems with mothers’ children); the social area; work and education; housing and finances; the woman’s health (including pregnancy / delivery complications threatening mother’s health); criminal or legal involvement; and miscellaneous or geopolitical issues.

36 Summary Pregnancy (and the subsequent parenthood) may be seen as a developmental phase which provides an opportunity for psychological growth and, simultaneously, an increased risk of intrapsychic conflict. In a “good enough” situation, pregnant women (and their partners) are able to appreciate and identify with the positive aspects of their own parents, and further the process of “working through” intra psychic conflicts, separation and autonomy. Consequently, women (and their partners) may experience enhanced independence and self-determination. Pregnancy may also serve to extend a couple’s intimate bond and be integrative of maturity resulting in a more securely attached marriage and child. It may be experienced as a time of immense fulfillment, joy and satisfaction.

In a less than “good enough” situation, the demands of pregnancy and the transition of roles and relationships increases intrapsychic conflict that may result in intrapersonal conflict with significant others, depression and anxiety. Pregnancy may be unplanned and unwanted, and, in unstable mothers, may acquire distorted meaning. It may be a proof of adulthood, an intended solution to marital conflict (Offerman-Zuckerberg, 1980), or initiated as a corrective attachment experience with predictable ambivalence, shame, guilt, inadequacy, and identity instability. This may lead to inappropriate and distorted ideation regarding the pregnancy, delivery, child and partner thereby increasing the risk of depression and anxiety in pregnancy or the postpartum period. The opportunity for psychological separation can then fail, and the experience of interpersonal trauma and insecure attachment is repeated in the new parent-child dyad. Depending on the degree of depression (severity, chronicity) and/or psychological development, an unhealthy mother-infant interaction is observed. Depressed mothers may interfere with the normal dyadic regulation by being intrusive or withdrawn. Infants of intrusive mothers become angry and turn away to cope, while infants of withdrawn mothers develop passivity and withdrawal. These infants fail to develop healthy self regulation (Cohn & Tronick, 1989; Hart et al, 1998). Furthermore infant cognitive development is worse (Murray et al, 1999) including dysregulated attention and arousal, impaired learning and information processing (Singer & Fagen, 1992). Maternal depression during childhood has other important consequences for children.

For patients with sufficient internal resources, pregnancy (and the early postpartum period) presents an outstanding psychotherapeutic opportunity to confer very significant benefits to mothers and potentially critical early prevention for their children.

References Ballou, J (c1978). The psychology of pregnancy: reconciliation and resolution. Lexington Books.

Ballou J (1978). The significance of reconciliative themes in the psychology of pregnancy. Bull Menninger Clin. 42(5):383-413.

Bernazzani O, Saucier JF, David H, Borgeat F (1997a). Psychosocial factors related to emotional disturbances during pregnancy. J Psychosom Res.1997a. Apr;42 (4):391-402.

Bernazzani O, Saucier JF, David H, Borgeat F (1997b). Psychosocial predictors of depressive symptomatology level in postpartum women. J Affect Disord. 46(1):39-49.

37 Bernazzani O, et al (2004). Contextual Assessment of the Maternity Experience: development of an instrument for cross-cultural research. Br J Psych Suppl. 46:s24-30.

Bibring G (1959). Some considerations of the Psychological Processes in Pregnancy. Psycholanalytic study of the Child. 14:113-21.

Blum BL (1980).Psychological aspects of pregnancy, birthing, and bonding. Human Sciences Press.

Bowlby J (1977). The making and breaking of affectional bonds. I. Aetiology and psychopathology in the light of attachment theory. An expanded version of the Fiftieth Maudsley Lecture, delivered before the Royal College of Psychiatrists, 19 November 1976. Br J Psychiatry. 130:201-10.

Cohn JF, Tronick E (1989). Specificity of infants' response to mothers' affective behavior. J Am Acad Child Adolesc Psychiatry. 28(2):242-8.

Cowan PA, Cowan CP (1988). Changes in marrriage duing the trnasition to parenthood. In Michaels, G.Y. and Golberg, W.A.. The Transition to Parenthood, Current Theory and Research. New Youk; Cambridge University press.

Hart S, Field T, del Valle C, Pelaez-Noggueras M (1998). Depressed Mothers interactions with their one-year-old infancts. Infant Behav Devel. 21:519-25.

Lederman, RP (c1996). Psychosocial adaptation in pregnancy : assessment of seven dimensions of maternal development. Springer Pub. Co.

Leifer M (1977). Psychological changes accompanying pregnancy and motherhood. Genet Psychol Monogr. 95(1):55-96.

Martin JA, Hamilton BE, Ventura SJ, Menacker F, Park MM, Sutton PD. Births: final data for 2001. Natl Vital Stat Rep. 2002 Dec 18;51(2):1-102.

Murray L, Sinclair D, Cooper P, Ducournau P, Turner P, Stein A (1999). The socioemotional development of 5-year-old children of postnatally depressed mothers. J Child Psychol Psychiatry. 40(8):1259-71.

Offerman- Zuckerberg J (1980). Psychological and Physical Warning signals Regarding Pregnancy, in Psychological Aspect of Pregnancy, Birthing and Bonding. Blum, B. Human Sciences Press Inc. New York.

Paykel ES, Emms EM, Fletcher J, Rassaby ES (1980). Life events and social support in puerperal depression. Br J Psychiatry. 136:339-46.

Pines D (1982). International J Psychoanl. 63 (3) 311-9.

Singer JM, Fagen JM (1992). Negative affect, emotional expression and forgetting in young infants. Develop Psychol. 28:48-57.

Winnecot, C et al (1989). Psychoanalytic Explorations D.W. Winnecott. The Harvard University Press. The Winnecott Trust.

38 Perinatal Depression & Anxiety

Author: Diane de Camps Meschino, MD

Pregnancy and the postpartum period are high-risk times for both new onset and recurrent mood and anxiety disorders in women. Antenatal and Postpartum Major Depressive Disorder may represent the child’s first adverse life event (Newport et al, 2002a; Newport et al, 2002b). There is compelling data that exposure to MDD influences both fetal and early childhood development independently (Henry et al, 2004). The cause of depression and anxiety disorders is poorly understood but appears to be multifactorial and is conceptualized according to the biopsychosocial model.

The previous chapter deals with psychological development during pregnancy, psychosocial contributors to perinatal mood and anxiety disorders and attachment consequences. In this chapter, perinatal disorders will be considered within the context of rapidly changing biological and hormonal influences. While ‘hormone related causes’ are hypothesized to exist, their role in these disorders is yet to be discovered. Included is a brief overview of what is currently known in order to stimulate scientific and clinical interest in mood gender distinctions. Both pregnancy and the postpartum period will be discussed due to increasing research regarding the prevalence of difficulties in both periods. Anxiety disorders are included, as they are frequent, disabling, often the presenting symptom, and easily dismissed.

Depression and Gender Depression is one of the leading causes of disease related disability in the world (WHO). The lifetime prevalence for women is estimated to be 20% with most illness clustering in the reproductive years (Murray & Lopez, 1996). Gender distinctions begin at puberty (11-14) with the female to male ratio increasing from 1:1 to 2:1 (Angold et al, 1998; Kessler & Walters, 1998). This ratio is maintained throughout the reproductive years. A number of studies point to increased prevalence rates during pregnancy (Bennett et al, 2004), in the postpartum period (Wisner et al, 1993a; O’Hara & Swain, 1996), and during the menopausal transition (Kessler et al, 1993; Dennerstein, 1993). The ratio may decline post menopause but the evidence is inconsistent (Pariser, 1993; Weissman et al, 1993).

There is inconsistent evidence regarding a unique premenstrual mood syndrome vs. a premenstrual worsening of an existing mood disorder, and whether oral contraceptives and HRT may induce depressive episodes (Steiner et al, 2003).

Hormones, brain and mood The relative rates of depressive episodes have caused researchers to consider the role of hormones in mood and other psychiatric syndromes. It appears that gradual hormonal changes are dealt with by feedback mechanisms without conscious awareness of the changes but abrupt changes may lead to psychiatric symptoms. There is some evidence to suggest that psychiatric symptoms are worse at times of low estrogens and progestins (i.e. premenstrual, postpartum, menopausal transition).

There may be a subset of women whose moods are sensitive to changes in gonadal steroids. The pharmacological simulation of pregnancy and postpartum states was associated with mood changes in women with PMDD but not in controls (Bloch et al,

39 2003). It is important to be reminded of the multiplicity of causes in any disorder lest women once again be considered hapless victims of their hormones, or worse that hormones become the sole definition of femininity.

Gonadal steroids are involved in the organisation of the brain. By the 6th week in utero the male’s testes are producing androgens, some of which is converted to estradiol. Estradiol activates estrogen receptors in the brain & organizes the brain to be male. In the female fetus, FSH increases by the 12th -20th weeks stimulating the fetal ovaries to produce ovarian hormones. The impact on brain organization is not yet understood (Seeman, 2002).

During puberty there is a reshaping of the brain by neuronal death and growth, the pattern of which differs in females and males and is related to the amount of sex hormones. In essence gonadal steroids activate differences that were hard wired in the organization phase.

Gonadal steroids influence almost all aspects of neurotransmitter formation and activity via both genomic and tissue specific effects. Furthermore, the impact on the functional capacity of the brain may depend on the person’s developmental stage (Rubinow et al, 1998).

There is much data suggesting that estrogen and serotonin interact in a complex manner in the regulation of affect (Grigoriadis & Kennedy, 2002; Seeman, 1997). Estrogen receptors are found in many areas of the brain including motor, cognition (attention, memory, perception) and affect centres.

Estrogen protects against the toxic effects of stress, aging and brain injury. It increases firing, blood flow, glucose transportation and work at the level of the neuronal network. Estrogen impacts neurons by enhancing dendritic growth (particularly the hippocampus), cell migration, and cell differentiation; by preventing cell death; and by promoting growth of the myelin sheath. Male brains develop more slowly and with less symmetry than female brains.

Some of estrogen’s interaction with neurotransmitters includes an agonist effect on serotonin activity (increase number of receptors, transport and uptake); increase synthesis of serotonin, up-regulation 5-HT1 receptors, down-regulation 5-HT2 receptors; decrease MAO activity; increase NA activity; and decrease D2 activity.

Other gonadal hormones are also active in regulating behaviour and affect. Progesterone has been shown to increase irritability and dysphoria, however this may relate to the specific preparation of progesterone. Androgens produced by the adrenals and ovaries have a role in programming and organizing brain circuits. Testosterone increases aggressive behaviour, causes less sexual avoidance, and is high around ovulation. Higher levels are associated with higher libido, masturbation and more sexual partners (Cashdan, 1995). Testosterone decreases may be associated with depression, anxiety, and decreased libido, and may be therapeutic in hormone sensitive depressive disorders (Studd & Panay, 2004).

40 Depression in Pregnancy and Postpartum Depressive symptoms in the perinatal period are extremely common. The range of symptoms extends from the mildest (enhanced emotionality, sadness) to moderate (adjustment disorders, minor depression) to the most severe (Major Depressive Disorder).

Postpartum Blues The blues occur in up to 80% of new mothers and have an onset within the first few days of delivery, lasting for days to one to two weeks. Symptoms include emotional lability, tearfulness, sleep difficulties, irritability, and poor concentration. Supportive care and education is usually sufficient, however up to 20% develop PPD and women should be observed for this development (Henshaw et al, 2004).

Perinatal Depression The incidence of perinatal Major Depressive Disorder (MDD) is 10-16% both in pregnancy and the first 6-12 weeks postpartum. One third of these will be first episodes. Depression in pregnancy and the postpartum have similar symptom profiles to depressive syndromes at other life stages, although may be associated with greater anxiety. The nosology (name) “Postpartum Depression” relates to clinician’s observation that the depression of postpartum may be different than MDD presenting at other life stages. The current restricted DSM definition of PPD is that of Major Depressive Disorder within one month of delivery. In spite of this, many clinicians use a more inclusive definition observing its’ presentation anytime within the first 3-12 months postpartum. A careful history may reveal that many postpartum episodes had their onset during pregnancy (Gotlib et al, 1991; Stowe, et al, 2005). Pre-existing and new onset medical disorders such as anemia, thyroid disorders, other autoimmune disorders, must be considered in the differential diagnosis.

Mood may be one of sadness with crying for no apparent reason or anhedonia (loss of pleasure) and may fluctuate particularly with the amount of sleep obtained. Clinicians observe that perinatal depression is often associated with severe anxiety, irritability and an inability to sleep even when given the opportunity. Anxiety is focused on the baby’s health, breastfeeding issues, financial issues, her appearance and relationship or her own health. Mothers often feel no love or bonding with their baby, feel inadequate as mothers, and express associated guilt. They have often lost interest and pleasure in things that normally hold interest including friends, hobbies and their baby. They may have escape fantasies, such as walking out the door and never returning. They may also have thoughts of wishing they never had children and feel that the rest of their lives will be a joyless one of entrapment or imprisonment. In more severe depressive episodes, mothers may have thoughts of not wanting to live, of taking their own lives, or of harming their baby (see also OCD). Although they feel ashamed of such thoughts, they are relieved to be asked and to know that thoughts of harming one’s baby occur extremely commonly in both women with PPD (>40%) (Jennings et al, 1999; Wisner et al, 1999) and new parents in the community (34-65%) (Abramowitz et al, 2003; Leckman et al, 1999).

Major Depression episodes are most often limited to 3 months, but residual symptoms often persist for one year. Those with a history of mood disorders tend to have a longer duration and severity. Most recover from the episode but most will have non-puerperal recurrences. Earlier intervention may yield better outcomes (Nonacs & Cohen, 2000).

41 Patients, health care providers, family and friends may dismiss symptoms of depression in pregnancy and postpartum due to the normal occurrence of insomnia, fatigue, change of appetite and loss of energy seen in these periods.

Risk factors for perinatal depression in pregnancy: The risks of new onset or recurrent depressive disorders in the perinatal period reveal a multifactorial etiology (Altshuler et al, 1998; Robertson et al, 2004). Depressive or anxiety symptoms during pregnancy may be the greatest risk for PPD. A personal or family history of mood or anxiety disorders (including premenstrual dysphoric disorder) is associated with increased perinatal risk (Hendrick et al, 1998). Prior MDD confers a risk of 30% while a prior PPD confers a risk of 50% to 62% risk of subsequent postpartum episodes. Other factors include ambivalence about pregnancy, insecure attachment style (Bifilco et al, 2004), limited social support, marital conflict and a history of childhood sexual abuse. Additional postpartum issues include health problems/obstetrical complications, child care stress, infant irritability/temperament and the baby’s gender (India, China) (Lee et al, 2000; Patel et al, 2002).

Women frequently discontinue medication in preparation for, or upon discovery of pregnancy. Seventy five% of women who have recurrent MDD relapse with medication discontinuation near conception, while abrupt discontinuation of antidepressants during pregnancy results in 70% having adverse effects, suicidality, and hospitalization (Cohen et al, 2004). In one study, prophylactic treatment immediately after delivery (within 24 hrs) reduced relapse rate from 62% to 6.7% (N=23 open study).

Criteria for Major Depressive Disorder (MDD) DSM-IV

5 of the following, criteria 1 and or 2 must be met 1. Depressed mood/sadness or emptiness (irritability, crying spells for no apparent reasons) 2. Loss of interest / inability to enjoy normally pleasurable activities: social, hobbies, her children, her new baby And/Or 3. Loss of interest / inability to enjoy normally pleasurable activities: social, hobbies, her children, her new baby 4. Disturbed sleep (inability to sleep), hypersomnia 5. Excessive weight gain or failure to gain or loss (failure to gain), change in appetite 6. Psychomotor retardation or agitation 7. Fatigue or diminished energy 8. Guilty ruminations or feelings of worthlessness 9. Diminished concentration or ability to think 10. Thoughts of death or suicide

Symptoms are present for at least two weeks and cause significant distress or impairment with daily function. (+/- diurnal variation) ______

Also common in PPD  Anxiety / excessive worries about her own or baby’s health, other worries  Disturbed maternal-infant interaction  Intrusive thoughts about harm coming to / harming baby

42 Questions:  Pregnancy: How have you been feeling through your pregnancy? How often is your mood down? Do you still feel interested and find pleasure in the things you normally enjoy? What are you thinking about your baby? What are you doing to prepare for the baby?  Postpartum: How have you been feeling on a day to day basis? How often do you cry? Do you feel irritable?  How many hours of sleep are you getting? How many hours in a row? Can you nap when the baby is napping?  Did/do you have any difficulties with breastfeeding?  Do you eat? What are you eating?  How do you feel about your baby? Do you enjoy her/him?  How do you feel about yourself as a mother? Do you ever feel trapped or wish to escape?  Observe the maternal-infant interaction for under/over responsiveness.

Postpartum psychosis While rare, (1-2 per 1000), postpartum psychosis is a psychiatric emergency. It occurs most often within a few days to 2 weeks after delivery. Symptoms may include being detached or preoccupied, with an inability to sleep (Leibenluft et al, 1996). The mother may exhibit confusion, disorganized thought and/or behaviour, paranoia, hallucinations or delusions (Brockington et al, 1981). The latter may include beliefs about the safety of the baby, evils of the world or themselves and may include thoughts or attempts to harm the baby and or themselves. Psychosis commonly represents a bipolar episode. Women with bipolar disorder are at very high risk of recurrence, especially in the first two weeks postpartum (Kendell et al, 1987; Leibenluft, 1996). Adequate sleep may be preventive in some cases. Alternate causes include a psychotic depressive episode, an exacerbation of schizophrenia/schizoaffective disorder or a brief psychotic episode. While the risk of recurrence of postpartum psychosis with subsequent pregnancies, has been reported as high as 70%, it likely depends on the diagnosis. The most recent research suggests a 57% risk of recurrent postpartum psychosis when the diagnosis established is bipolar disorder (Robertson et al, 2005).

Questions: Start open-ended questions and maintain a nonjudgmental, non-reactive stance. Allow time for disorganized behaviour and thoughts to be revealed  How have you been feeling about yourself? How have you been feeling about your baby?  Do you feel you and your baby are safe?  Have you been able to sleep?  Do you hear voices of people you cannot see? . Infanticide  Have you had any thoughts about harm coming to your baby?  Have you had any thoughts or plans of harming your baby? How do feel about these thoughts?  Have you done anything which could have harmed your baby? Have you harmed your baby?

43 44 Edinburgh Postnatal Depression Scale The Edinburgh Postnatal Depression Scale (Cox et al, 1987) (see end of chapter) was developed to assist health professionals screen mothers for postnatal depression. The validation study revealed that of those who scored above threshold, 92.3% were likely to be suffering from a depressive illness. Clinical assessment and judgment are necessary to confirm the diagnosis and determine severity. The self-report scale consists of ten short statements about how she has been feeling in the past week. Most mothers are able to complete it in less than 5 minutes. It will not however, detect all anxiety disorders without accompanying depressive symptoms, phobias or personality disorders. The scale has also been validated for use in pregnancy, the first year postpartum, and fathers. It has been validated cross culturally, translated into many languages and may require a higher degree of suspicion if used with patients with English as a second language (Cox et al, 2003).

Comparison Postpartum, Blues and Depression PP Blues PP Depression PP Psychosis Incidence Up to 80% 12-16% 0.1-0.2% Onset Hours -Days Days- Months Days-Weeks Symptoms Emotionality Sad, flat, irritable, crying Confusion Tearfulness Severe anxiety Disorganized Irritability Unable to sleep/eat behaviour/thoughts Sleep difficulty Poor concentration, Delusions (incorrect Guilt beliefs about baby, self, Self image: maternal world) inadequacy Hallucinations (hearing Lack of love for baby voices) Thoughts of harming Decreased sleep infant, self Mood:irritability/depressed Escape fantasies /euphoric Risks None-PPD Self care Same as PPD Infant care NB: Suicide Suicide Infanticide Infanticide Homicide Poor bonding & attachment Maternal-infant interaction Child cognition & behaviour Treatment Reassurance Care/Safety of Baby Psychiatric Emergency Support Education Hospitalization Education Emotional support Care/Safety of Baby Instrumental support Antipsychotics Psychotherapy +/-mood stabilizers Parent/child therapy +/- antidepressants +/- Antidepressants +/- Benzodiazepines +/- Hospitalization

45 Anxiety Disorders All anxiety disorders have been reported to be more common in women with peak incidence in the reproductive years (Kessler et al, 1994; Regier et al, 1990; Kessler et al, 1995). Pre-existing anxiety or antenatal anxiety may be a greater risk factor for PPD than a history of depression (Matthey et al, 2003). It is normal for new mothers to experience increased vigilance and have concern about their new baby whose life depends on their attentiveness. This may cross the line into an anxiety disorder in 4-6% of postpartum women. Although there is less literature regarding prevalence, new onset or course of perinatal anxiety disorders than mood disorders, there is increasing interest.

Generalized Anxiety Disorder GAD presents as excessive worry about many things with difficulty sleeping, restlessness, poor concentration, fatigue and feeling keyed up or on edge. Women report an inability to sleep or relax. They may find themselves checking their baby more frequently than they think is necessary, and may have trouble leaving their baby even with a trusted caregiver. Domains of worry often include financial security, personal appearance and household responsibilities / hygiene (Wenzel et al, 2003). Anxiety disorders may be difficult to distinguish from PPD as they often represent the onset of PPD or co-occur. To distinguish anxiety from normal perinatal concern, anxiety must be widespread, be excessive and interfere with daily functioning. The DSM IV criteria of 6 months duration may not be met at initial presentation.

Questions:  Do you feel worried? Do you think your worry is excessive or interfering with your life? Do you ever feel panicky or out of control?  How do you feel about the pending delivery?  Are you able to sleep, nap or take time for yourself?

Panic Disorder Panic attacks present as acute episodes of panic, with heart palpitations, shortness of breath, chest pain, dizziness and fear of impending doom or death. Panic Disorder has the additional feature of worry about having future panic attacks. It often occurs with generalised anxiety or MDD.

Post Traumatic Stress Disorder PTSD may occur especially relating to labour and delivery due to anticipated pain, sexual exposure and lack of control. Re-experiencing (flashbacks, nightmares); avoidance (dissociation, numbing) and hyperarousal (difficulty sleeping, severe anticipatory anxiety) occur. Anxiety can feel so overwhelming that women may fear they are losing their minds and need reassurance. Trauma related to forthcoming delivery and traumatic birth experiences (invasive, poor pain control, life-threatening) are currently being researched as a source of PTSD.

46 Obsessive Compulsive Disorder OCD is an anxiety disorder that may have its’ onset in pregnancy (Altshuler et al, 1998) or the postpartum period occurring in 1-3 % of postpartum women, often with PPD. OCD is characterized by obsessions (intrusive thoughts or images), which cause anxiety and/or compulsions repetitive or ritualistic behaviours or thought patterns) which transiently diminish anxiety. Intrusive, often sudden unwanted thoughts of harm coming to their baby or of doing harm to their baby are the most common phenomena. The thoughts are frightening, and experienced as not like themselves (ego-dystonic). Typically women with OCD alone do to not act on thoughts but one must make a careful assessment of impulsivity and co-occurring depression or anxiety. Women often find that being able to disclose these thoughts helps them feel more contained and in control. A calm non-judgmental approach assuring the mother that you will work with her to ensure both her and her baby’s safety is best.

Questions:  How do you feel about your baby?  Do you find yourself worried about your baby’s health?  Some women have thoughts of harm coming to their baby or of doing harm to their baby. Does that ever happen to you?  How do these thoughts make you feel? Do you ever feel like you might act on these thoughts? Have you been able to do anything to make the thoughts go away?

Adjustment Disorders Women with adjustment disorders have excessive reactions to stressful life circumstances. Adjustment Disorders may be difficult to distinguish from PPD due to the multi-factorial nature of PPD but they do not meet criteria for Minor Depressive Disorder, MDD, GAD or Panic Disorder and symptoms may be responsive to psychosocial interventions. A psychiatric assessment with past psychiatric and family psychiatric history or a trial intervention may assist with diagnosis.

Risks of Untreated Mood and Anxiety Disorders

Pregnancy a) Mother The risks for the mother include poor self care, inadequate nutrition & weight gain, sleep disturbance, illicit drug use, smoking, alcohol abuse, emotional deterioration and increased anxiety. Interpersonal/family conflict may escalate especially if irritability is one of the symptoms. Depression in pregnancy confers a risk of PPD, which imparts independent risks for the child. There are some reports of an increased risk of pre- eclampsia (Kurki et al, 2000) and of operative delivery, epidurals and NICU admissions (Chung et al, 2001). b) Fetus There are reports of preterm birth, lower birth weight, smaller head circumference, lower APGAR scores (Lou et al, 1994) and poor neonatal adaptation (Misri et al, 2004). Speculated mechanisms include increased cortisol, medications or lifestyle. There are many reports regarding the neurobiological impact of fetal exposure to MDD. There is

47 evidence to suggest that at least some effects relate to the impact of MDD during pregnancy rather than inheritance.

Animal models of stress during pregnancy reveal adverse impact on growth (Schneider et al, 1999), adverse impact on learning (Weller et al, 1988), neuronal death and abnormal development of neuronal structure in fetal brain (Smith et al, 1981) and sustained dysfunction of the HPA axis in offspring (Maccari et al, 2003). It is also unknown whether these fetal effects are permanent; however some studies reveal the impact of prenatal stress in rodents and primates is endures into adulthood.

Postpartum Postpartum risks for the mother are similar to antenatal risks.

A number of studies have revealed the negative impact on children (see also Psychology of Pregnancy chapter) of maternal depression. Reduced emotional and verbal responsivity, disengagement, intrusiveness, anger, irritability, frustration and impatience with the child are some of the possible manifestations of PPD. Abnormal infant attachment and behaviour (Murray, 1992; Stein et al, 1991) and cognitive development (Cogill et al, 1986; Hay et al, 2001; Sharp et al, 1995) have been associated with maternal depression. IQ was found to be significantly, negatively associated with duration of depression and language was negatively associated with number of depression episodes after delivery (Nulman et al, 2002). Although some mothers are able to interact positively in spite of depression and anxiety (Cohn & Tronick, 1989; Weinberg & Tronick, 1998a; Weinberg & Tronick, 1998b), the more severe and prolonged, with the greatest life adversity, the greater the impact (Grace et al, 2003; Suri et al, 2004). Thus it is inappropriate to lump all PPD together in terms of assessing risk to the infant and child. An individual assessment, including the severity and chronicity of depression and anxiety, and the mother’s ability to respond and parent her infant is more informative (Murray et al, 1996a; Murray et al, 1996b).

Intervention for Perinatal Depression and Anxiety Disorders Treatment should be tailored to the severity of depression/anxiety and individual needs of the mother and her family, including appropriate biological, psychological and social interventions.

Treatment should include validation of experience, patient education and recruitment of family and partners for assistance. Education of partners and family is essential, as they may feel helpless and overwhelmed or defensively dismissive. Ensuring adequate sleep is an important preventive and treatment measure. Mothers frequently regard their partner’s job as ‘work’ with an entitlement of sleep, while the work of caring for a baby is minimized. This stance is often supported by the partner, necessitating education of the couple. Partners or family may assist with night feeds and diaper changes. Overlapping shifts can be organized to maximize the sleep of each partner. Supplementing with formula may help women achieve extended hours. Breastfeeding, may give the greatest nourishment and protection to newborns but can be associated with pain and difficulty (eg. latching difficulties, inverted or cracked nipples, mastitis) in great contradistinction to expectations. As difficulty with breastfeeding is often a source of diminished self-esteem, guilt and depression, a flexible nonjudgmental stance by care providers is essential. Women experience enormous societal imposed pressures to breast feed, which is unhelpful in the context of postpartum depression and anxiety.

48 Respite care, visiting home assistance, public health, mental health nursing and other community agencies can be employed with great benefit. Reduction of stress such as the care of other children, housework and other domestic chores should be addressed. Women commonly feel they should be able to manage all the usual tasks of housework and may focus on it as a way of dealing with anxiety or failing self-esteem. Emotional support should be addressed and can be as or more important for depressed mothers than instrumental support. New mothers benefit from ample opportunity to talk about their feelings, anxieties and thoughts.

Treatment with psychotherapy, facilitated support groups, and supportive counselling may be effective in mild or moderate syndromes and is usually preferred over medication by both mothers and health care professionals (see chapters on Psychological Adaptations of Pregnancy and on IPT). Involvement with groups of well mothers is often reported to cause unfavourable comparisons and make depressed mothers feel worse. Nonetheless, social isolation can be severe and needs to be addressed with available resources.

A careful history will allow physicians to determine the individual risks and benefits of treating with medication. In more severe situations, wherein anxiety and /or depression is disabling, and has a profound negative impact (including risk of death) for the mother, baby, other children and marriage, medication should be encouraged. Mothers should participate in an informed decision and some may wish to try psychotherapy first. Many who have a chronic history, more severe depression, or in whom therapy has not been effective are relieved by the accumulated data and take medication with good response. MOTHERISK (www.motherisk.com) at the Hospital for Sick Children (Toronto) is an excellent international resource for data on the risk of medications in pregnancy and lactation.

Initiation of medication in pregnancy and postpartum especially in patients with severe anxiety or irritability requires close attention for the occurrence of side effects which might impair functioning further. Some patients will require an increase of antidepressant dose through the end of the second and third trimester due to changes of body volume and metabolism. This should be determined on an individual clinical basis. Patients should be followed carefully and treated for one year before a trial of weaning off antidepressants. Some PPD will be the first episode of chronic or recurrent mood disorders requiring longer-term treatment (Bell et al, 1994). Women with depression in pregnancy or postpartum should be educated to seek advice about prevention or treatment with respect to future pregnancies.

Exposure to antidepressants is greater for the fetus via placental passage than to the infant via breast milk. Case reports and case series are the sources of the bulk of data regarding lactation.

Treatment Risks with Antidepressant SSRI’s, SNRI and TCA’s appear not to be associated with major malformation (Nonacs & Cohen, 2003; Addis et al, 1995; Wisner et al, 1993b; Kulin et al, 1998; Einarson et al, 2001) but may be associated with a clinically insignificant lower birth weight. Studies have been criticized for grouping data for each class of drug; however sufficient data for each medication alone is not available. Data is insufficient to assess increases in minor malformation. One study reported a nonstatistical increase in spontaneous abortion but this was not controlled for depression (Pastuszak et al, 1993). A recent advisory (GSK

49 Advisory, 2005) regarding an increase of both cardiac and major malformations associated with first trimester paroxetine exposure vs. other SSRI’s was issued due to new data. The GSK report is an uncontrolled retrospective review in addition to two recently presented abstracts. Contradictory data has been reported in the literature. Publication and peer review is necessary to know how to interpret the conflicting data (Health Canada, 2005).

Neurobehavioural teratogenesis is concerned with the impact of exposure on variables such as cognition and behaviour. The data regarding TCA’s and SSRI’s are reassuring. A prospective study, controlled for depression & other variables with TCA (Kessler et al, 1995), fluoxetine (Leibenluft, 1996) found no effect of fetal exposure throughout gestation on children’s’ global IQ, language development, and behaviour (to age 71 months). A similar study found no developmental delay to age 2 [TCA(209), SSRI(185)] (Simon et al, 2002). Nulman’s earlier study found no difference up to 86 months of age of exposed compared to unexposed infants in language, mood, temperament, activity, distractibility, or behaviour problems [TCA (80), fluoxetine (55)] (Nulman et al, 1997). While this data is reassuring, longer-term studies are needed. Both TCA’s and SSRI’s are secreted in breast milk, but the exposure is less than in utero. The small studies on the impact due to exposure via breast milk are reassuring (Stowe et al, 1997; Rampono et al, 2000) but the long-term neurodevelopmental impact is unknown (Nulman et al, 2003). Some studies report preferences of one agent over another due to decreased passage into the breast milk and infant drug levels, however distinctions to date suggests the primacy of therapeutic impact on the mother.

SSRI’s and Neonatal Adaptation Syndrome There are numerous reports of a “neonatal adaptation syndrome”. There may exist both a toxicity syndrome and a discontinuation syndrome, which has yet to be clearly distinguished (Haddad et al, 2005). While adaptation difficulties occur in unexposed children, the risk is higher is babies exposed to either untreated depression or antidepressants. The risk is ever higher in babies exposed to co-morbid psychiatric disorders and those treated with both antidepressants and clonazepam (Oberlander et al, 2004). Respiratory distress and CNS, motor and GI symptoms are most commonly observed (Chambers et al, 1996; Koren et al, 1998; Costei et al, 2002). Symptoms are usually mild and resolved within the first few days to 2 weeks. Authors of a literature review estimate the relative risk from third trimester exposure compared to first trimester or no exposure to be 3.0 (Moses-Kolko et al, 2005). A more severe but rare syndrome but no fatalities have also been reported. It may be possible to reduce the adaptation syndrome at birth by decreasing the dose close to term however research confirmation is pending. Such a technique must be considered carefully with respect to the individual’s history and risk of recurrence of depression. Polypharmacy should be avoided if possible.

Treatment Risks with Benzodiazepines There have been contradictory reports regarding the risk for cleft palate with benzodiazepine exposure in the first trimester. A meta-analysis revealed increased rates of major malformation and of oral clefts but only in case control studies (Dolovich et al, 1998). Authors disagree on the likelihood of increased rate of oral clefts with first trimester exposure, but suggest the increase is in the range of 0.7% (Born & Steiner, 2003). Possible minor IUGR is a risk with diazepam, but not lorazepam or clonazepam. Neurobehavioural teratogenesis requires further study but the data thus far reveal no differences to minor motor developmental delays. If benzodiazepines are given near

50 term neonatal adaptation may be impaired with symptoms of hypotonia, difficulty with temperature regulation, apnea, lower AGPAR scores, failure to feed, and withdrawal. Benzodiazepines are highly lipid soluble with long retention in neural tissues and thus it is recommended to use higher potency ones with lower accumulation, wherein high peak concentrations can be avoided. Lorazepam is recommended by some due to its lower rate of placental transfer.

With severe anxiety, symptom control sometimes necessitates the use of clonazepam, a benzodiazepine with a longer half-life.

There is a risk of sedation in exposed breast fed infants. Low doses of shorter acting benzodiazepines (lorazepam) are preferred.

Lithium Lithium is the safest of mood stabilizers during pregnancy. Nonetheless it is associated with organ dysgenesis, specifically Epstein’s anomaly, which increases from 1/20000 in unexposed to 1-2/1000 in exposed infants. This represents an increase of 20-40 times the norm. Growth may be affected with significantly more weight gain in a non-dose dependent fashion. In a small study there was no evidence of neurobehavioural teratogenesis. Neonatal toxicity including floppy baby, hypothyroidism, and nephrogenic diabetes is well known and requires anticipated intervention. Minimizing the impact is advised by using more frequent smaller dosing, increasing the dose through pregnancy as needed and decreasing before term.

Previously breast feeding was not recommended while taking Lithium (AAPCD, 2000) however the Academy of Pediatrics (AAPCD, 2001) has changed the classification to cautionary use. If breastfed, infants must be adequately hydrated, and be monitored for lithium levels, renal function and hypothyroidism.

Mood Stabilizers Both valproic acid & carbamazepine are potential severe physical & neurobehavioural teratogens. If alternative agents are not an option, mothers should be maintained on folic acid (4 mg /day) and may be followed with level 2 ultrasounds and amniocentesis. Neural tube defects are increased twofold over baseline and the research on cognitive delay has yielded contradictory results thus far. In general anticonvulsants are associated with double the baseline rate of birth defects, with a predominance of orofacial clefts, neural tube defects, heart defects, microcephaly and IUGR (Boylan et al, 2003).

In preliminary studies, it is not clear whether lamotrigine increases organ dysgenesis (Vajda et al, 2003; Sabers et al, 2004; Costa et al, 2004). No details regarding impact on growth are available. The greatest risk of treatment of adults with lamotrigine is a life threatening rash (Stephen Johnson’s syndrome). Due to immature metabolic processes in infants, this side effect is a theoretical risk. There is a significantly increased clearance rate of lamotrigine in pregnancy with a rapid decrease postpartum, and both stages may require dosage adjustments (Pennell et al, 2004).

In breast feeding Valproic Acid is associated with a risk of hepatotoxicity in children under two. Carbamazepine is possibly associated with jaundice, and hepatic dysfunction but the risk overall to breastfed infants seems minimal (Burt et al, 2001).

51 First Generation Antipsychotics Organ dysgenesis was initially not associated with chlorpromazine, trifluoperazine, perphenazine, and prochlorperazine, although a reanalysis of data questions these results (Zipursky et al, 2003). There is an increased risk of malformations in psychotic patients with or without chlorpromazine. Initial reports of limb reduction with haloperidol are not supported. Neonatal toxicity is possible with movement disorders seen with haloperidol, and extrapyramidal symptoms with phenothiazines mostly resolving within days. The risk may be less than with selected mood stabilizers, and thus a reasonable option for the treatment of acute mania or recurrence of symptoms while pregnant is to switch from lithium or an anticonvulsant for the entire pregnancy or first trimester. Concomitant anticholinergic and antihistaminergic agents are often needed.

Antipsychotics are secreted into breast milk and no clear guidelines are available. Infants should be monitored for sedation if exposed with lactation (Hallen, 2002).

Second-Generation Antipsychotics Olanzapine has not been associated with malformations in several case reports and series. Data are limited regarding neonatal toxicity. Use of olanzapine necessitates monitoring for weight gain, insulin resistance, gestational diabetes, and preeclampsia. Thus far there have been no reports of adverse effects. Motherisk reports that for older atypical antipsychotics, 1-2% of the dose appears in the breast milk, far below the 10% limit considered safe. There is little data on newer antipsychotics.

52 Edinburgh Postnatal Depression Scale (EPDS) From the British Journal of Psychiatry June, 1987, Vol. 150 by J.L. Cox, J.M. Holden, R. Sagovsky

Instructions for users: 1. The mother is asked to underline the response which comes closest to how she has been feeling in the previous 7 days. 2. All ten items must be completed. 3. Care should be taken to avoid the possibility of the mother discussing her answers with others. 4. The mother should complete the scale herself, unless she has limited English or has difficulty with reading. The EPDS may be used at 6-8 weeks to screen postnatal women. The child health clinic, postnatal check-up or a home visit may provide suitable opportunities for its completion

Response categories are scored 0, 1, 2, and 3 according to increased severity of the symptoms. Items marked with an asterisk are reverse cored (i.e. 3, 2, 1, and 0). The total score is calculated by adding together the scores for each of the ten items. Users may reproduce the scale without further permission providing they respect copyright by quoting the names of the authors, the title and the source of the paper in all reproduced copies.

If used for screening by non-clinicians, a cut off point of 9/10 is recommended, in order to maximize the case inclusion (sensitivity). If used by a health care provider who is attending to the mother a cutoff of 12/13 is recommended. Any positive score on item 10 warrants further clinical assessment.

53 Edinburgh Postnatal Depression Scale (EPDS) British Journal of Psychiatry June, 1987, Vol. 150 by J.L. Cox, J.M. Holden, R. Sagovsky

Name: ______Address: ______Baby's Age: ______

As you have recently had a baby, we would like to know how you are feeling. Please UNDERLINE the answer which comes closest to how you have felt IN THE PAST 7 DAYS, not just how you feel today.

1. I have been able to laugh and see the funny side of things. As much as I always could Not quite so much now Definitely not so much now Not at all 2. I have looked forward with enjoyment to things. As much as I ever did Rather less than I used to Definitely less than I used to Hardly at all 3. * I have blamed myself unnecessarily when things went wrong. Yes, most of the time Yes, some of the time Not very often No, never 4. I have been anxious or worried for no good reason. No, not at all Hardly ever Yes, sometimes Yes, very often 5. * I have felt scared or panicky for not very good reason. Yes, quite a lot Yes, sometimes No, not much No, not at all

54 6. * Things have been getting on top of me. Yes, most of the time I haven't been able to cope at all Yes, sometimes I haven't been coping as well as usual No, most of the time I have coped quite well No, I have been coping as well as ever 7. * I have been so unhappy that I have had difficulty sleeping. Yes, most of the time Yes, sometimes Not very often No, not at all 8. * I have felt sad or miserable. Yes, most of the time Yes, quite often Not very often No, not at all 9. * I have been so unhappy that I have been crying. Yes, most of the time Yes, quite often Only occasionally No, never 10. * The thought of harming myself has occurred to me. Yes, quite often Sometimes Hardly ever Never

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63 Perinatal Depression and Anxiety Summary

Pregnancy and the postpartum period are high-risk times for both new onset and recurrent mood and anxiety disorders in women. Antenatal and Postpartum Major Depressive Disorder may represent the child’s first adverse life event. There may be a subset of women whose moods are sensitive to changes in gonadal steroids.

Perinatal Depression

Postpartum Blues  emotional lability, tearfulness, sleep difficulties, irritability, poor concentration

Perinatal Depression  up to 70% of pregnant woman report depressive symptoms  incidence Major Depressive Disorder (pregnancy & postpartum): 10-16%  history mood disorder portends longer duration and severity

Symptoms and Signs:  severe anxiety, irritability, inability to sleep given opportunity  mood: sadness, crying for no apparent reason; may fluctuate with sleep  may feel: no love for baby, inadequate as mothers, guilt  lost interest and pleasure in friends, hobbies and their baby  escape fantasies  suicidal &/or homicidal ideation  abnormal maternal-infant interaction +/or attachment

Common Risk factors for perinatal depression:  previous episode of mood/anxiety disorder or PPD  depressive or anxiety symptoms during pregnancy  insecure attachment style  ambivalence / fear re maternal role  stressful life events  poor social supports (perceived or reality based)  child care stress  infant irritability/temperament

Postpartum Psychosis  1-2 per 1000 postpartum women  psychiatric emergency  bipolar disorder high risk of postpartum recurrence (57% recurrence PPP)

Symptoms:  detached  inability to sleep  confusion, disorganized thoughts and/or behaviour  paranoia, hallucinations or delusions  thoughts of / attempts to harm the baby and / or self

64 Edinburgh Postnatal Depression Scale The Edinburgh Postnatal Depression Scale: screening tool for mothers for postnatal depression. Also used in pregnancy and can be used for fathers.

Perinatal Anxiety  normal: increased vigilance & concern about new baby  pre-existing anxiety great risk factor for PPD  anxiety disorder: 4-6% of postpartum women  extreme anxiety: ambivalence re pregnancy / interference with child care

Generalized Anxiety Disorder  excessive worry about many things, interferes with daily functioning  difficulty sleeping, restlessness, poor concentration, fatigue, tense  checking baby more frequently than necessary  trouble leaving baby even with trusted caregiver

Panic Disorder  acute episodes: panic, heart palpitations, shortness of breath, chest pain, dizziness, nausea, tingling  fear of impending doom, may interpret as something wrong with baby/self  worry about having future panic attacks

Post Traumatic Stress Disorder A) antenatal due to anticipated pain, sexual exposure, lack of control B) postpartum as the result of traumatic delivery

Symptoms:  re-experiencing (flashbacks, nightmares)  avoidance (dissociation, numbing)  hyperarousal (difficulty sleeping, severe anticipatory anxiety)  overwhelmed, may fear losing her mind / something wrong with fetus /baby

Obsessive Compulsive Disorder OCD onset pregnancy / postpartum; 1-3 % of postpartum women, often with PPD. Subsyndromal presentation so common that some regard it as normal.  obsessions (intrusive thoughts or images): cause anxiety  and/or compulsions (repetitive or ritualistic behaviours or thought patterns): transiently diminish anxiety.  Intrusive, unwanted thoughts or images of harm (often violent) occurring to baby or of doing harm to baby are most common  thoughts are frightening  thoughts unlike known self (ego-dystonic)  with OCD alone, women do to not typically act on thoughts  one must make a careful assessment of impulsivity and co-occurring depression or other anxiety disorders  being able to disclose these thoughts helps mothers feel more contained and in control.

65 Risks of Untreated Depression in Pregnancy a) Mother  poor self care, inadequate nutrition, inadequate weight gain, weight loss, drugs, smoking, alcohol  sleep disturbance, emotional deterioration, increased anxiety  pre-eclampsia  risk of PPD with independent risks for child b) Fetus  preterm birth, lower birth weight, smaller head circumference, lower APGAR scores, poor neonatal adaptation  neurobiological impact of fetal exposure to MDD

Risks of Untreated Postpartum Depression (baby)  cognition, language, behaviour, maternal-infant interaction, attachment

Intervention Differential diagnosis: pre-existing / new onset medical disorders such as thyroid disorders, anemia, autoimmune disorders

Postpartum Blues Reassure, support, educate and observe for PPD

Perinatal Depression and Anxiety  emotional support: benefit from talking about feelings, anxieties, thoughts  instrumental support: sleep, household responsibilities  more severe: medication should be considered/used  some PPD: first episode of chronic or recurrent mood disorder

Treatment Risks with Antidepressants:  Data regarding TCA’s and SSRI’s are reassuring.

SSRI’s and Neonatal Adaptation Syndrome Increased risk with:  exposure to antidepressants  co-administered clonazepam  anxiety / depression alone  co morbid psychiatric disorders

Treatment Risks with Benzodiazepines  major malformation and oral clefts (contradictory evidence) 1st trimester  severe anxiety/insomnia: use of clonazepam/lorazepam necessary  risk of sedation in exposed breast fed infants; start with lower doses

Postpartum Psychosis  Hospitalize  Ensure safety, care of baby  Antipsychotic (Atypicals)  Possible Mood Stabilizer, possible Antidepressants

66 Decision Tree for Assessment and Referral of Women with Possible Post Partum Depression Adapted with permission from: Postpartum Depression: A guide for front-line health and social service providers, 2005, produced by the Centre for Addiction and Mental Health, authored by Lori Ross, Cindy-Lee Dennis, Emma Robertson Blackmore, and Donna Stewart

The service provider, the new mother or her family is concerned about the new mother’s mood or behaviour, OR the new mother has a high score on a screening scale.

IF YES Is she exhibiting bizarre or unusual behaviours or beliefs (e.g. extremes of mood, especially elation; seeming lack of need for sleep; strange ideas about the baby or IF YES 1. Refer immediately to emergency psychiatric harming the baby)? services or a hospital emergency room for evaluation for postpartum psychosis or severe depression. IF NO 2. Until this assessment occurs, ensure that the Is she exhibiting suicidal or infanticidal IF YES mother is not left by herself or alone with the thoughts or behaviours, including fantasies baby. Make a referral to child protection services if about running away. you are concerned that a child is or may be in need of protection. IF NO 3. Follow up in 24 hours to ensure that the Do the symptoms impair the new mother’s IF YES assessment has occurred and that a treatment ability to care for herself, the baby or other plan is in place. children (e.g. she is unable to get our of bed or prepare meals)?

IF NO 1. Refer to a family doctor or another physician for evaluation for possible clinical anxiety or Have symptoms (the mood or behavioural IF YES depression. changes) been present for two or more 2. Follow up in one or two weeks to ensure an weeks? assessment has occurred and a treatment plan is IF NO in place. 3. If the new mother has not improved in two Have symptoms resulted in significant IF YES weeks or her condition worsens, arrange a repeat disruptions to appetite or sleeping patterns, or visit with the family doctor for possible specialist are physical symptoms such as racing heart, referral. shortness or breath, dizziness or gastrointestinal disturbances present?

IF NO 1. Refer to community supports, including new mom’s groups or any PPD groups in the area. 2. Recommend self-care strategies. 3. Assess for any chronic stressors (e.g. inadequate / unsafe housing, social isolation) and refer to social programs as appropriate. 4. Provide with emergency mental health telephone hot lines with instructions to call if symptoms worsen. 5. Follow up in approximately two weeks to reassess symptoms.

67 Post Partum Mood Disorder – Patient Perspectives

Author:

What Your Patient is Thinking But Unwilling to Say  ‘If I let him know about the scary thoughts and how badly I’m feeling he’ll take my baby way!’  ‘I just want to be myself again!’  ‘I love my baby! Why is this happening to me?’  ‘I am the only person in the world this has happened to!’  ‘Nobody ever told me this could happen!’  ‘I just want to wake up & have this gone!’  ‘I must be the worst mother in the world!’  ‘I’m so confused; I can’t understand half of what the doctor’s telling me!’  ‘I feel like I’m outside my body looking in!’

What A Woman Expects From Her Doctor 1) Not to be dismissed. If she has the courage to disclose that something is wrong, she needs to have her concerns heard and taken seriously. If she is told to wait for 2 weeks to see if the “Blues” pass, hire a baby-sitter and go out for dinner, or be given a prescription for antidepressants without consideration of breastfeeding, she will see her physician as part of her recovery team.

2) To have a proper diagnosis. This validates that her experience is real. She may have thought or been told that PPD is made up. By giving it a name, and often including the family with this information, the woman will feel less guilty and sometimes less shamed. These are 2 of the most common emotions felt by women with ppd.

3) Being given treatment options. Most women do not want to take medication especially when nursing. Involving the Mom in the risk/benefit analysis and providing her with the sources get answers to questions about drugs and breastfeeding (Motherisk, Dr.Jack Newman etc.) the Mom will feel more in control and have a stronger “buy-in” to her treatment.

4) Sensitivity to her concerns around breastfeeding. Many postpartum mothers feel it is the one thing that they can do for their baby. Being told to stop breastfeeding because of taking antidepressants devastates these patients and may make them non-compliant.

5) Reassurance that they will get better & it is not their fault & that they are not alone. This message will have to be repeated numerous times throughout their treatment

6) They want to know why this happened & by explaining the bio-psychosocial model (or ‘Earthquake’ model) of Deborah Sichel & Jeanne Watson Driscoll (Women’s Moods 2000, New York, Quill) helps to alleviate the guilt, fear & confusion that a diagnosis brings.

68 7) Explaining that medications often take several weeks to start to work is beneficial, so that if the patient initially decides not to use medicines they may not wait until they are in an emergency situation before resorting to pharmaceutical treatment.

8) The women want something in writing – a handout or pamphlet on PPD (like the one developed by Best Start).

9) Women want to be connected with local support services & to be given a follow-up appointment with their doctor within the next two weeks before leaving their doctor’s office.

Key Concerns of Women with PPD:  Breast feeding or Bottle feeding  Primary Relationship  Incompetence as a Mother  Why is this Happening to Me?  Will I ever be the Same?  Disbelief in Recovery  Hopelessness  Need for Reassurance

Key Emotions of Women with PPD:  Guilt (much more than usual)  Anger  Confusion  Fear (of leaving the baby)  Loss of Joy, Loss of Self  Shame

The Appearance of the Patient The typical mother with PPD will do anything possible she can to hide the fact that she is ill. She will appear at your office with make-up on, washed & coifed hair & nails manicured & painted. The baby will be well looked after, neat & tidy & dressed in clean clothes. If you ask the mom how she is she will say ‘fine!’ Please do not be fooled! This is show for your benefit. It often represents the first shower she has had in weeks & the first make-up she has worn since her last visit to your office. It is an attempt to mask her depression.

Prevention: Four Key Questions to Ask New Mothers Please ask the following questions to encourage new mothers to talk. They can very easily become part of the well-baby check-up & will provide a great deal of insight into the emotional & physical well-being of a new mom. Women presenting to an emergency room/family doctor/clinic, & have a child under the age of 2, should also be asked these questions. DO NOT ASSUME ANYTHING! Taking a few moments to ask these questions may help a woman & her family, & thus reduce costs to the health care system down the line.

69 1) Are you able to sleep when the baby sleeps? This question will pick up mothers who are sleeping all the time & those who cannot sleep at all (i.e. those having racing thoughts). It is an extremely important question & difficulties can be an indicator of possible PPD. Was this the mother’s normal sleep pattern before the birth of her baby? Don’t assume that sleeping is a problem because of a crying baby. Find out what the mother does when her baby is sleeping.

2) Are you getting out? This question will pick up anxiety, depression, agoraphobia, exhaustion & the inability to cope. Remember that PPD includes anxiety symptoms. Women are not always going to look depressed & are experts at disguising their symptoms. Ask questions. Women experiencing PPD will often isolate themselves. Find out if they are still socializing.

3) Are you eating & if so, what are you eating? This question will pick up severe anxiety, i.e. a mother feel like she has a rock in her stomach, no appetite (& in some cases diarrhoea & vomiting), over-eating, especially eating too many carbohydrates. Some women will describe a feeling of having something stuck in their throats. It is very important to find out if these patterns occurred before the birth of the baby or if they are unusual for the woman.

4) Are you having scary &/or repetitive thoughts? Mothers sometimes experience obsessive thoughts about their baby &/or themselves. Asking this question may open lines of communication, but do not expect that a woman will confide in you at this point. She may be afraid of telling someone may lead to her baby being removed from her by a child welfare agency. Reassurance that other new mothers also have had scary & repetitive thoughts can be helpful. A safe & confidential environment is important to encourage verbalization of difficulties.

70 How to Talk to New Moms with Post Partum Mood Changes:

Author:

What to do to help me:  Be non-judgmental and treat me as an individual person with individual needs. Remember I have my own expectations for my life. Take the time to find out what they are.  Have an understanding of what Post Partum mood changes are and the effects on myself and my family.  Recognize the signs and be prepared to offer support and be empathetic.  Be prepared to offer resources to help me cope (for example, filling out forms, organizational tasks that I can no longer focus on)  Keep negativity out of the conversation.  Be prepared to spend time with me. Do not throw in a lot of rules & regulations (policies, procedures, referral, red tae). Just get me the service because I can’t cope and will walk away.  Be helpful, not demanding. Rules need to be flexible because I am a person not a stat.  Be patient with me as my decision-making skills are not available when I am depressed and sleep deprived.  Talk to me with respect. Recognize that it is difficult for me to request help. Don’t expect me to justify why I need help repeatedly.  Let me know what services you can provide for me and where I can get the other help that I need. Let me decide what services I am ready and prepared to accept.  Do not give up on me when I don’t live up to your expectations.  Do not tell me how I am feeling…or should be feeling.  Do not minimize my feelings.  When I welcome you into my life/ home please set a positive upbeat atmosphere that is warm, friendly and compassionate.  Services need to work collectively to support me and not against each other. Communication between agencies is important in order to avoid confusion me even further.  Do not be judgmental about my life/lifestyle and or my life choices.  I hear what you “do” louder than your words. Any of your negative thoughts or attitudes come out loud and clear to me.

What not to do to help me:  Do not lose your temper.  Do not be impatient.  Do not speak for me.  Do not devalue me as a person.  Do not talk down to me (I am intelligent).  Do not threaten my family or me.  Do not drug me out of my mind.

71 What to say to help me:  “Hi! My name is ______and I am here to help you. If we don’t get everything completed today we will make another appointment time. You tell me what works for you.  I have some forms that have to be filled out. We will work through them together.  You look down today. Do you need to talk? We can fill out these forms another day.

What not to say:  Don’t say: “snap out of it”…“Get over it”….“Move on”  Get rid of the words “should” and “why”  Please do not say “You should………..”  “Why do you feel that way”?

72 What New Mothers Need from their Moms

Authors: This information was developed by a group of women receiving treatment for postpartum mood disorders in a therapeutic group setting at Peoplematter in Muskoka- Parry Sound. For further information contact Linda Rankin, www.peoplematter.ca.

Mom’s/Grandmother: What Not to say/do to your Daughter when she has a new baby!

1. “Don’t take over” • Message I hear: Lazy irresponsible, not a good mother, mad, upset, what I do is not important. • What it makes me feel like: I don’t “Measure up”, mad, upset, and lower self-esteem • Instead. Reword and say: “What can I do to help?” “Where do you want me to start?” • Tone of voice should be friendly and helpful not sarcastic or judgmental.

2. “Don’t be absent” • Message I hear: You don’t care, I’m not special enough for you to care about. • What it makes me feel like: alone, scared, unloved, devalued. • Instead: Be available to me emotionally even if you live miles away.

3. “Don’t minimize my concerns and don’t assume everything is fine because you want it to be fine” • Message I hear: I’m inadequate, always making excuses for not measuring up. • What it makes me feel like: self doubt, guilt, upset, angry, disrespected. • Instead. Reword and say:” You look tired, I’ll take the baby and you sleep.” “I’ll take the baby and kids out for a walk this afternoon.” “Why don’t I order a pizza for dinner and send it over?”

4. “Don’t assume you have all the answers to my struggles” • Message I hear: I am not measuring up in your eyes and I’m inadequate. • What it makes me feel like: stupid, unable to cope, overreacting to simple things • Instead. Reword and say: Trust that I will “get it” with your gentle and continual support.

5. “Don’t solve my problems, don’t tell me what to do” • Message I hear: I’m inadequate, I can’t manage my own life. • What it makes me feel like: devalued, upset, angry, disrespected • Instead. Reword and say: Trust that I have the answers for my life and with your support I will find the answers.

6. “Don’t ask me to baby sit because I have raised my kids” • Message I hear: I am being punished for being born, I am not worthy of your support. • What it makes me feel like: alone, vulnerable, angry, scared. • Instead. Reword and say: Say nothing negative!

73 7. “Why are you always complaining that you are tired?” • Message I hear: I’m inadequate, everyone else can cope but you. • What it makes me feel like: guilt, upset, angry, disrespected • Instead. Reword and say: “I remember the sleep deprivation, what can I do to help?”

8. “I would never let you act like that when you were his/her age!” • Don’t expect my kids to be good, quiet, stress free to meet your needs. • Message I hear: you are not a good parent/ don’t know child as well as grandmother does. I must meet your needs over my child’s needs. • What it makes me feel like: upset, angry, and unsure of parenting skills even when you know you are right. Threatened loss of child’s loyalty to grandmother. • Instead. Reword and say: “This is what I found worked with you but didn’t work with your brother, you two were so different!” Offer positive suggestions or say nothing.

9. “(child) doesn’t act like that when he/she is with me” • Message I hear: blamed for my children’ behaviour. • What it makes me feel like: trapped, upset, angry, and unsure of parenting skills even when you know you are right. Threatened loss of child. • Instead. Reword and say: “Some of these behaviours are challenging to figure out and you are doing great in trying different approaches!!!!”

10. “Talk to me about some of the obstacles that you faced as a mother.” • Message I hear: I care about you. You are worth it. • What it makes me feel like: relaxed, valued, cared for • Instead. Reword and say: “keep it positive.”

Four Things New Moms Need from their Moms:

1. Communication: Positive, honest, verbal and non verbal

• Positive words, and compliments: • Not: criticisms/putdowns/sarcasm/jealousy • Do not blame me when things go wrong/or are not done • I hear what you do louder than your words • Negative comments and non-verbal communication will make me feel as thought I don’t “measure up” • Listen to me • Not: pretend to listen to me, • Do not ignore my thoughts/needs/ideas/feelings/plans • Do not treat me as a lesser person whose thoughts and feelings are inferior to yours

74 2. Self Esteem: Encouragement, nurturing, self esteem and growth a. Support: • Not: Criticisms/put downs/sarcasm/jealousy • Told what to do / or should do • Don’t sit there while I’m running around trying to do things • Ask if there is anything you can do and do it! • I really need your support when I am tired. b. Love, Let me be me. • Not: Do not expect me to be what I am not • Do not expect me to be a super mom/wife/daughter • Do not expect me to be a giving daughter when I am too tired • Respect my wishes • Give some hope that the future is going to get better.

3. Rules: Mutually agreed upon, clear spoken set of rules for behaviours expected in our relationship as it is changing. a. Every interaction has to be Guilt Free: • Not: Do not expect me to be the one that has to meet all the needs of all the family plus my own. b. Let me cry if I need to: • Not: Do not tell me to get over it. • Do not call me names, but understand this is a part of the process • Do not make demands on me • Do not ask me why I am crying (I usually don’t understand this myself) • Do not expect me to justify why I am crying. There might not be an apparent reason. c. Blended families: • Treat all the children equally. • All children need to be treated fairly and with consistency. • Favouritism will only cause dissension and tension in the family. • Each time this happens it further undermines the child’s relationship with you.

4. Roles: Clearly established roles in the family so each family member clearly understands where and how they fit into this new family. a. Work with me as we both adjust to our new roles. b. Provide me with your genuine support and empathy. • Please do not talk about me behind my back. That really hurts me as I struggle to do my best. c. Please! Please! Please! Do not judge me. • I really need your non-judgmental attitude.

75 Nursing Perspective: Postpartum Depression

Author: Ruth Schofield

In Ontario, public health nurses are community health nurses who, synthesizing knowledge from public health science, nursing science, and the social sciences, promote, protect, and preserve the health of populations (CPHA, 1990; APHA, 1997). Public health nurses work with families who experience postpartum depression through collaboration with other community service providers from a multitude of agencies, integrating and coordinating services for families to maximize continuity of care.

The Registered Nurse Association Ontario (RNAO) has best practice guidelines on postpartum depression that can guide public health nurses in their nursing practices.

Public health nurses may engage in a working relationship with the family during antenatal or postnatal periods. During the prenatal period a woman may either make a self-referral or be referred to public health. The public health nurse associated with the Healthy Babies, Healthy Children (HBHC) program would visit to assess, refer if appropriate, and provide support and education either by ongoing home visiting or prenatal education classes.

At birth, a woman and infant would be referred to HBHC program for a public health nurse assessment if the results of the Parkyn tool completed in the hospital indicate over a score of 9. During the postnatal period, public health nurses offer a wide range of supportive services to the families including the home visiting program by a public health nurse and family home visitor in the HBHC program, phone support, and referral to community supports such a postpartum depression support group, and other self help supportive services available in their community. Other referrals may include to mental health services, family physicians, and parenting resources. Length of involvement would be mutually agreed upon. Public health nurses also work collaboratively with other community services to strengthen the community supports for families experiencing postpartum depression such as organizing public and professional education events about postpartum depression in their local community.

References Canadian Public Health Association (1990). Community health ~ public health nursing in Canada: Preparation and practice. Ottawa, ON: Author.

American Public Health Association, PHNS (1997). The definition and role of public health nursing: A statement of APHA Public Health Nursing Section, 1996. Public Health Nursing.14(2): 78-79.

76 Interpersonal Therapy for Treatment of Postpartum Depression

Authors: Sophie Grigoriadis and Paula Ravitz

Interpersonal Psychotherapy (IPT) for post-partum depression is an effective treatment that focuses on the significant interpersonal changes and challenges that women experience in the post-partum period. Simple therapeutic guidelines assist clinicians to help their patients cope with commonly encountered losses, conflict or changes in relationships that are associated with the onset or perpetuation of symptoms. The goals of IPT are simple: to remit depression; to assist patients to better recruit or utilize social supports; and to work through their current interpersonal problems. In doing so, the functional status and quality of both the mother’s life along with her relationships can significantly improve.

Postpartum depression (PPD) is a common, potentially life threatening and disabling condition. It is estimated to occur in 10-15% of women with prevalence ranges from 5 to over 20 percent (O’Hara & Swain, 1996). PPD is phenomenologically similar to major depression that occurs at other life stages, however its onset is in the postpartum period, within four weeks after delivery (American Psychiatric Association, 2004). Very few treatment studies have been conducted in women with PPD; however, the best evidence for psychotherapy as an effective treatment for PPD is for Interpersonal Psychotherapy. Three studies have been conducted, two open trials and a wait list randomized controlled trial (Klier et al, 2001; Stuart & O’Hara, 1995; O’Hara et al, 2000).

Interpersonal Psychotherapy (IPT), a time-limited, manualized psychotherapy, was first designed for the treatment of individuals with nonbipolar, nonpsychotic major depression (Klerman et al, 1984). Currently, the Canadian and American Psychiatric Associations recommend IPT as a treatment for depression (Segal et al, 2001; American Psychiatric Association, 2000). Empirical evidence supporting its efficacy has grown since its early use, as has the breadth of its clinical application (Weissman et al, 2000; De Mello et al, 2004; Stuart & Robertson, 2003). This article reviews the principles and objectives of this type of treatment along with the necessary modifications for working with patients who suffer from depression during the postpartum period (Stuart & O’Hara, unpub). The model is briefly described, and the phases of therapy and the focal interpersonal strategies are discussed as applied to PPD. In some settings, it might not be feasible to adhere to the manualized IPT guidelines, however many clinicians report that it is extremely useful to apply an interpersonal formulation to understanding their patients, such as is presented in this chapter. As well, there are specific therapeutic techniques, such as communication analysis, and approaches that help patients to work through relational difficulties, that can be integrated into a primary care setting. It is hoped that this chapter will serve to spark interest in this highly efficacious treatment and that clinicians will consider receiving further training in IPT.

In IPT, we focus on our patient’s struggles with depression and interpersonal distress. Psychiatric illness occurs in a social context with interpersonal antecedents and consequences. While recognizing the role of biological and psychological factors in the causation of and vulnerability to depression, IPT focuses on social factors and current interpersonal problems. The treatment goal of IPT is to alleviate patients’ symptoms with

77 specific focus on interpersonal relationships as a point of intervention (Weissman et al, 2000; Stuart & Robertson, 2003; Ravitz, 2004).

IPT for Postpartum Depression

Suitability Criteria  Nonpsychotic, nonbipolar major depression*, with postpartum onset

Goals of Treatment  Remit depression  Alleviate interpersonal distress  Assist to build or better utilize social supports.

*Those who are less likely to be helped by a time-limited, structured treatment include patients with a history of severe and complex trauma and those with profound disturbances in personality functioning

Evidence and Rationale O’Hara, Stuart and others (O’Hara et al, 2000) conducted the first large trial of IPT for the treatment of postpartum depression. 120 women with a diagnosis of postpartum depression were recruited, and 99 completed the 12-week study. The women were randomly assigned to 12 weeks of IPT or to a waiting list control group (WLC). Significantly more women in the IPT group achieved remission of their depression compared to WLC (37.5% vs. 13.7%). Further evidence for the efficacy of IPT for PPD comes from smaller trials evaluating a group format for both prevention and treatment (Klier et al, 2001). IPT is a proven, effective treatment for mild to moderate postpartum depression and an alternative to pharmacotherapy, especially for breastfeeding women. It reduces depressive symptoms, improves social adjustment and does not interfere with breastfeeding, nor are there any medication toxicity concerns or side effects. However for women with psychotic features, bipolarity, or severe symptoms including suicidal or infanticidal ideation, IPT alone is not sufficient, and a combination of medications plus possible hospitalization should be considered (Klerman et al, 1984; Segal et al, 2001; Grigoriadis, in press).

Refer for psychiatric consultation or consider hospitalization when patients:  Have moderate to severe symptoms and do not respond to IPT alone  Endorse suicidal ideation or homicidal ideation  Have a history for severe depression in the past or other reproductive related depressive disorder (PMDD, previous PPD)  Need more support and monitoring than you can provide  Have psychotic or manic symptoms

The focal interpersonal problem areas of IPT are derived from research on the determinants of health and disease. This research has demonstrated the protective function of interpersonal support (Henderson et al, 1982; Brown & Harris, 1978), as well as the associations between interpersonal adversity and depression (Brown & Harris, 1978; Weissman & Paykel, 1974; Brown, 1998; Walker et al, 1977; Maddison & Walker, 1988). Patients can experience depression at times of significant interpersonal change or conflict (Weissman & Markowitz, 2000; Stuart & Robertson, 2003; Brown & Harris,

78 1978; Weissman & Paykel, 1974; Brown, 1998, Walker et al, 1977; Maddison & Walker, 1988; Bowlby, 1973). Once suffering from depression, patients often become more disengaged from their social relationships with an emergent sense of helplessness and isolation (Joiner et al, 1999). This in turn can fray at important relationships including those with their supports, spouses and their infants, creating significant risk of poor bonding which can have a long term adverse affect on the child and family (Martins, & Gaffin, 2000; Grigoriadis, in press).

The goals in IPT for treating our postpartum depressed patients are to help them break this vicious interpersonal cycle so that they can more effectively adapt to the significant changes in their lives and better connect with their social environment. IPT focuses on interpersonal (Klerman et al, 1984; Weissman et al, 2000; Stuart & Robertson, 2003; Ravitz, 2004) rather than intrapsychic or cognitive aspects of depression. It uses the biopsychosocial model (Meyer, 1957) to understand patients, and frames depression as a medical illness that occurs in a social context. Grounded in interpersonal and attachment theories (Bowlby, 1973; Sullivan,1953; Bowlby, 1969), biological and psychosocial approaches into a practical, present-oriented and effective treatment for depression. Stemming from the works of Sullivan and Bowlby, IPT places its emphasis on the relational aspects of individual experience (Klerman et al, 1984; Weissman et al, 2000).

Stuart and Robertson state that, “psychological problems occur, and interpersonal relationships break down, when an individual’s needs for attachment are not being met. This can occur both when the individual cannot effectively communicate his or her needs to others, and when his or her social support network is incapable of responding adequately to his or her needs” (Stuart & Robertson, 2003). Attachment theory proposes that relationships are both adaptive and crucial for survival (Bowlby, 1969). Bowlby described different types of attachment: secure and insecure. Securely attached individuals usually have had sufficient positive early relational experiences and are able to trust others. Insecurely attached individuals often have a history of parental misattunement, neglect or abuse in their childhood significant relationships. These early attachment paradigms become “internal working models” that guide the individual’s relational perceptions, expectations and behaviours. Maladaptive patterns of communication can result from insecure attachment and interfere with interpersonal functioning. Although it is not realistic to expect to change an internal working model of relationships or attachment style in a brief therapy, one of the tasks of IPT is to help patients communicate their needs and emotions more effectively. This can result in a positive experience of current needs being met, setting the stage for continued improvements in interpersonal functioning over time. In IPT, the therapist closely examines communication and tries to help patients to expand their interpersonal repertoire of behaviours, encouraging selective affiliation, interpersonal flexibility and a sharing of responsibility in their current relationships (Ravitz, 2004).

The ramifications of maternal depression postpartum may be of greater importance than depression at other times of the life cycle because the psychological attachment between the mother and child begins to form during this period (Martins & Gaffin, 2000; Bowlby, 1969). Whereas adults have developed enough flexibility to adapt to the interpersonal deficits manifested by a woman experiencing an episode of depression, infants are entirely dependent on the mother for both physical and psychological care. Furthermore, interpersonal disruptions are common during the postpartum period (Stuart & O’Hara, 2003; Stuart, 1999). These include numerous discrepancies between what is

79 desired and what is experienced or perceived by the mother and her social supports - parents, relatives, friends, and partner, which are most pronounced. The potential adverse impact of untreated postpartum depression highlights the importance of effective intervention, including Interpersonal Psychotherapy.

What Happens in a Course of IPT for Treatment of Postpartum Depression? Beginning Phase The therapy has three phases. In the beginning (sessions 1 to 4), a psychiatric assessment focuses on interpersonal relationships to assess suitability and establish the focus of the therapy. The need for medication is evaluated and depression is discussed as a medical illness in a social context, with interpersonal antecedents and sequelae. One must ascertain if the symptoms of depression are qualitatively different from those that would be expected in postpartum women not experiencing depression given that fatigue, alterations in sleep pattern and weight loss are common during the postpartum time. The focus of therapy is determined according to the current interpersonal problems that appear to be most related to the onset and perpetuation of the individual’s current depressive episode. The goals should be explicitly explained to the patient in the beginning phase of therapy: to remit depression and to help resolve the selected interpersonal problem area(s), thereby instilling positive expectations. With more complex patients or patients with severe and chronic depression, hospitalization and/or combined treatment with medication is often recommended (Klerman et al, 1984; Weissman et al, 2000; Thase et al, 1997).

Providing psychoeducation is a very important task of the initial phase of treatment. Women are told: 1. they are suffering from depression 2. depression is a legitimate, treatable medical illness 3. the biopsychosocial model is explained 4. postpartum depression and depression in general are relatively common 5. there are specific treatments available for depressive illnesses including psychotherapies (CBT and IPT) and pharmacotherapy. They are encouraged to utilize family and friends along with community infant-mother groups in order to reduce isolation and improve their social supports. Depressive symptoms are then placed in an individually tailored interpersonal context.

80 Formulation worksheet for PPD

Biological Factors Psychological Factors Hx-MDD, PPD, PMDD Social Factors Weight gain/body image FHx Intimate relationships Substances Supports Personality characteristics Pregnancy/delivery People at work Attachment style complications Cognitive style Breastfeeding Coping techniques Medical illnesses/Rx Losses – own mother?

Patient Name

Interpersonal Precipitants Grief/loss Interpersonal disputes Role transitions Interpersonal sensitivity Birth of baby Breastfeeding difficulties Postpartum issues – lack of sleep etc

Formulation

An interpersonal inventory is taken in the initial phase of treatment and the important relationships in the patient’s life are reviewed. Pertinent information includes: expectations the patient had prior to childbirth for social support from the spouse, parents, and significant others; nature of interactions and communication with significant others; satisfactory and unsatisfactory aspects of the relationship and ways in which the patient would ideally like to change the relationship. Other important information one must obtain include: patient's expectations about motherhood; feelings regarding her child and their relationship; the details of the pregnancy – whether or not it was planned, its course, the labor and delivery process; interpersonal ramifications of the birth of the child; and the patient's relationship to others potentially affected by or involved with the birth or subsequent care of the child.

Take Home Points: Beginning Phase

 Provide psychoeducation about depression and its functional and interpersonal impacts  Carefully evaluate symptoms, safety, functioning, relationships and supports  Choose current interpersonal therapeutic focal area that are linked to the onset or perpetuation of symptoms  Encourage patient to utilize or recruit supports

81

Middle Phase and the Focal Problem Areas IPT focal areas guide therapeutic interventions through the middle phase of therapy (sessions 4-13), linking symptoms of depression to interpersonal events, losses, changes or isolation. IPT helps patients to understand their associated life experiences within four focal interpersonal problem areas: 1. interpersonal disputes 2. role transitions 3. bereavement 4. interpersonal deficits. Each interpersonal focal area has a differing set of therapeutic guidelines. Throughout the course of therapy, interpersonal patterns are linked with dysphoric mood. Relationship expectations and communication are examined to develop a more effective interpersonal behavioural repertoire, in which empathic responsiveness and clearer expression of emotions and needs are encouraged. It is expected that patients will actively participate and work during the course of therapy to effect change within their identified interpersonal problem areas. Clinicians monitor symptoms weekly throughout a course of treatment. In the event that patients are worsening or not improving, it is critically important to consider psychiatric consultation and the addition of antidepressant medication. It is also important to screen for both suicidal or infanticidal ideation and know when to refer or consider hospitalization.

The Interpersonal Focal Problem Areas: 1. Interpersonal Role Disputes These are defined as “nonreciprocal role expectations” with significant others (for example, a marital dispute, or disputes with parents or in-laws) and are often accompanied by poor communication or misaligned interpersonal expectations. During the course of therapy, behaviour patterns are examined through Communication Analysis, to reveal ways in which the patient interacts with significant others that might inadvertently exacerbate conflicts through acts of commission or omission. Different ways of understanding and communicating within relationships are explored to facilitate more satisfactory interpersonal relatedness. The therapist identifies the nature and stage of the dispute to understand how the conflict is enacted and what issues are at the crux of the disagreement. For example, if the dispute is at an impasse, couples might have closed off communication in contrast to couples who are actively arguing and unsuccessfully trying to negotiate their differences. As well, some couples may be at a stage of near dissolution. According to the stage of the dispute, IPT provides therapeutic guidelines that might ‘heat up,’ ‘cool down,’ or assist in transitioning to separation. Therapeutic techniques include a problem solving and brain storming approach, assisting the patient to more effectively communicate. Expectations, wishes and needs of both parties are considered and realistically appraised. Role playing can also elicit the communication patterns as they develop. The patient can play the role of the significant other as a means of developing insight into the reactions of that person. It is important to assess the degree of each spouse’s perception of adjustment to the newborn, the expectations regarding childcare, the role that the patient expected both herself and her husband to play, the role of other significant people (including other children), the way these relationships evolved during the pregnancy, and the status of the relationships prior to and after the pregnancy. The patient may need to explore possible alternatives, to change or lower her expectations of her spouse, to more effectively communicate her needs, to develop a more balanced set of expectations

82 about the newborn in addition to making more effective use of or developing new sources of support. It is often helpful to include the significant other in one or two therapy sessions in order to provide them with psychoeducation about depression and to gain ancillary information about the patient's behavior, to examine the alternative point of view of the other party in the dispute, and to allow the therapist to examine the "in-vivo" interactions of the patient and her significant other. With resolution of the dispute, the symptoms of depression remit as our patients regain a sense of mastery over their relational difficulties.

Take Home Points: Middle Phase Tasks of Interpersonal Problem Area of Disputes  Make links between interpersonal events, related to dispute, and symptoms  Identify issues that are in dispute  Identify maladaptive patterns of communication  ‘Stage’ the dispute: impasse, renegotiation or dissolution  Communication analyses help patients to evaluate expectations, learn to communicate needs and emotions, and expand their understanding and perspectives  Assist to better utilize or recruit supports

2. Role Transitions These involve life events that lead to significant changes in social roles that are central to our sense of identity in relationships. For women with PPD, the challenge is to integrate the new social role as parent with her previously defined sense of herself and her social roles within her family, workplace or community. The new mother needs to develop new skills and expand the breadth of her responsibilities while maintaining or adjusting old relationships. There are numerous new social roles to integrate in this time of change, as mother, co-parent and possibly working parent, each with demands and responsibilities that can be confusing to prioritize. IPT tries to help patients to develop a more balanced view of each role, evaluate and modify expectations, and help with the setting of priorities. This can involve renegotiating time commitments and responsibilities in order to adapt to new time, physical and emotional constraints, needs and wishes in her multiple roles as mother, wife and employee. As in all focal areas of IPT, communication is examined in detail in order to help the patient more effectively assert her needs and utilize her supports.

As well, there are physical demands of providing for a new infant, recovering from the delivery, breast feeding and sleep disruptions secondary to the infant’s needs that compounds the challenge of coping and adjusting to the changes. Family social supports may or may not be present at a time when the mother’s need them. Other social supports that were contingent on having flexibility and minimal familial responsibilities might also fall away during this period, thus amplifying a sense of isolation and sadness. In the context of so many changes in the interpersonal landscape, women can often find themselves feeling like they no longer have the necessary skills to cope, ill-prepared, and poorly supported with lowered self-esteem.

The tasks of the middle phase of therapy in the interpersonal problem area of role transitions involve systematically exploring both positive and negative aspects of the old role in addition to examining the challenges and opportunities of the new role.

83 Moreover, a grieving process can occur that needs to be addressed with associated sadness over some of the positive aspects of what has been lost in the role transition. Goals include, assisting the patient in combining her new roles with established ones, facilitating the expression of emotions and needs attached to each of the roles, exploring ambivalent feelings about each role, developing of a more balanced view of each role, modifying expectations and setting priorities. Techniques include: brain-storming to expand awareness of choices and evaluate potential solutions, implementing a plan of action, and assessing the results of the implementation. Possible solutions can include asking her spouse to assume more childcare responsibilities, decreasing the amount of time spent at work, requesting more flexible hours or finding alternative childcare. As in all the focal areas, assisting with more effective communication is paramount. The symptoms of depression remit as the social role transition is worked on and more adaptive ways to cope and better utilize supports are found. With this comes a renewed sense of satisfaction in the patient’s new role, as she is better able to manage challenges and take advantage of opportunities.

Take Home Points: Middle Phase Tasks of Interpersonal Problem Area of Role Transition  Make links between interpersonal events, related to transition, and symptoms  Explore both positive and negative aspects of how things were in the old ‘role’, prior to the birth of the infant  Explore the challenges and brainstorm regarding opportunities in the new role, since the birth of the infant  Improve communication  Assist to better utilize or recruit supports

3. Bereavement. This interpersonal problem area is chosen as a focus in IPT when the onset of major depressive disorder coincides with the death, or an anniversary event related to the death, of a significant other. Ambivalence is typical in these relationships, yet the lost other is sometimes idealized. Therapy facilitates grieving and examination of the relationship’s positive and negative aspects to achieve a more realistic view of the lost loved one. As well, details of the death are reviewed including review of all support provided around the time of the funeral. In the latter stages of the treatment, patients are encouraged to replace aspects of what was lost in the relationship and begin to move forward in their lives. Women with PPD can have grief reactions related to the death of a newborn or a significant other during the neonatal period. Moreover, they may have delayed mourning of a past loss of a significant other during the antepartum or postpartum period. The goal of the therapy is to facilitate mourning and in so doing, remit the depression.

84 Take Home Points: Middle Phase Tasks of Interpersonal Problem Area of Bereavement  Make links between interpersonal events, related to death of loved one, and symptoms  Review the details of the death, the funeral and subsequent period of bereavement  Explore both positive and negative aspects of the lost relationship  Explore how things were, prior to the loss – both positive and negative aspects  Explore the challenges and opportunities of adjusting to how things are, subsequent to the loss  Improve communication  Assist to better utilize or recruit supports

4. Interpersonal Deficits. This final focal area is chosen when specific life events coinciding with the onset of the depression are absent, particularly for individuals who have difficulty forming or sustaining relationships. These patients are often interpersonally hypersensitive and have a chronic history of interpersonal difficulties. Since they have few relationships in their social network, the therapeutic relationship is used to build social skills through role plays, unlike other focal areas in IPT, where the therapy centres on relationships outside the therapeutic dyad.

Attachment between mother and infant is crucial in the development of the infant’s sense of security and safety. For mothers with postpartum depression who have a more chronic history of relational difficulties, it is critically helpful to assist them to develop a nurturing relationship with their children. The therapist assists the patient to be more attuned and responsive to social cues and to practice interpersonal skills, which can be used in the development of future relationships. In addition, the therapist attends to the mother’s relationship with the infant. Education regarding the care of the infant assumes great importance. A more active role in assisting the patient to find other social or community supports may need to be taken, providing direct encouragement to the patient to utilize these resources.

Take Home Points: Middle Phase Tasks of Interpersonal Problem Area of Deficits  Make links between social isolation, interpersonal sensitivity and symptoms  Identify maladaptive patterns of communication  Communication analyses help patients to evaluate expectations, learn to communicate needs and emotions, and expand their understanding and perspective  Role modeling and role plays to improve social skills  Assist to better utilize or recruit supports

85 Ending Therapy In the concluding, or termination, phase of IPT (sessions 13-16), therapeutic gains are reviewed and consolidated. It is hoped that the goals of treatment have been achieved with remission of symptoms and improved interpersonal functioning. However, contingency plans are always discussed in the event of a recurrence, to contact a physician for early treatment. Future problems and stressors are anticipated in order to facilitate autonomous problem solving. Normative sadness is differentiated from clinical depression, and the feelings associated with the ending of therapy are openly discussed. In the spirit of not leaving things unsaid as the therapy comes to an end, this is an opportunity for a “good goodbye” and for exchange of honest feedback. If the therapy has failed to achieve the goals of treatment, one might contract to extend the course of IPT or suggest sequencing with a different form of treatment. In research protocols for acute major depression, the course of therapy is usually 12 to 16 once-weekly sessions; however, there is strong evidence to consider a tapering schedule and maintenance monthly sessions, especially for individuals with chronic or recurrent depression (Weissman et al, 2000; Stuart & Robertson, 2003; Frank et al, 1990). In the event that the depressed mother does not improve, it will be important to recommend alternative treatments that might include pharmacotherapy or family therapy along with psychiatric consultation.

Discussion Interpersonal therapy is an evidence-based, time limited and manualized psychotherapy that has been increasingly translated into clinical practice in Canada. It is part of the psychotherapy curriculum in most post-graduate psychiatry programmes with growing opportunities for continuing education workshops. To acquire clinical competence in IPT, participation in a didactic IPT Workshop followed by clinical supervision of a minimum of two cases is recommended, adhering to the IPT manual (Weissman et al, 2000). Training is available at the Centre for Addiction and Mental Health through yearly CME workshops. The International Society of Interpersonal Therapy is a good source to learn of other training opportunities (www.interpersonalpsychotherapy.org)

The brevity and power of IPT allows clinicians to help greater numbers of patients who suffer from prevalent and disabling public health-care problems, such as postpartum depression (O’Hara & Swain, 1996; WHO, 2001). Women experiencing postpartum depression typically experience a multitude of interpersonal stressors. Thus IPT is well suited to the treatment of postpartum depression as a pragmatic, specific, problem focused, short-term, and effective approach. The rationale and evidence for IPT’s efficacy for treatment of postpartum depression provides a strong empirical foundation to support its use (Segal et al, 2001; APA, 2000).

References American Psychiatric Association (2004). Diagnostic and Statistical Manual of Mental Disorders- Fourth Edition- Text Revision. DSM-IV-TR. Washington, D.C.: American Psychiatric Association.

American Psychiatric Association (2000). Practice guideline for the treatment of patients with major depressive disorder, second edition. http://www.psych.org/psych_pract/treatg/pg/Depression2e.book.cfm

86 Bowlby J (1988). A secure base: parent-child attachment and health human development. New York: Basic Books.

Bowlby J (1973). Attachment and loss. New York: Basic Books.

Bowlby J (1969). Attachment. New York, Basic Books.

Brown GW (1998). Genetic and population perspectives on life events and depression. Soc Psychiatry Psychiatr Epidemiol, 33:363-72.

Brown GW, Harris TO (1978). Social origins of depression: a study of psychiatric disorders in women. London (UK): Tavistock.

De Mello M, De Jesus Mari J, Bacaltchuk J, Verdeli H, Neugebauer (2004). A systematic review of research findings on the efficacy of interpersonal therapy for depressive disorders. Eur Arch Psychiatry Clin Neurosci.

Frank E, Kupfer DJ, Perel JM, Cornes C, Jarrett DB, Mallinger AG, et al (1990). Three- year outcomes for maintenance therapies in recurrent depression. Arch Gen Psychiatry, 47:1093-9.

Grigoriadis S (in press). Postpartum and its mental health problems. In Seeman MV, Romans S. (Eds.), Women’s Mental Health: A Lifecycle Approach, in press, Lippincott Williams & Wilkins. Philadelphia, PA.

Henderson S (1977). The social network, support, and neurosis: the function of attachment in adult life. Br J Psychiatry, 131:185-91.

Henderson S, Byrne DG, Duncan-Jones P (1982). Neurosis and the social environment. Sydney Australia: Academic Press.

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Joiner T, Coyne JC, Blalock J (1999). On the interpersonal nature of depression: overview and synthesis. In: Joiner T, Coyne JC, editors. The interactional nature of depression. Washington (DC): American Psychological Association, p 3-19.

Klerman GL, Weissman MM, Rounsaville BJ, Chevron ES (1984). Interpersonal psychotherapy of depression. New York: Basic Books.

Klier C, Muzik M, Rosenblum KL, Lenz G (2001). Interpersonal psychotherapy adapted for the group setting in the treatment of postpartum depression. Journal of Psychotherapy Practice and Research 2001, 10:124-131.

Maddison D, Walker W (1967). Factors affecting the outcome of conjugal bereavement. Br J Psychiatry, 113:1057-67.20.

Martins C, Gaffin EA (2000). Effects of early maternal depression on patterns of infant- mother attachment: A meta-analytic investigation. J Child Psychol Psychiat, 41:737-746.

87 Meyer A (1957). Psychobiology: a science of man. Springfield (IL): Charles C Thomas.

O'Hara MW, Stuart S, Gorman LL, Wenzel A (2000). Efficacy of interpersonal psychotherapy for postpartum depression. Arch Gen Psychiatry, 57:1039-1045.

O’Hara MW, Swain AM (1996). Rates and risk of postpartum depression – A meta- analysis. International Review of Psychiatry. 8:37-54.

Ravitz P (2004). The Interpersonal Fulcrum: Interpersonal Therapy for treatment of Depression. Canadian J Psychiatry Bulletin February 2004: 15-19.

Segal ZV, Whitney DK, Lam RW, and the CANMAT Depression Work Group (2001). Clinical guidelines for the treatment of depressive disorders: psychotherapy. Clinical Guidelines for the treatment of depressive disorders. Can J Psychiatry, 46(Suppl 1):29S- 37S.

Stuart S (1999). Interpersonal psychotherapy for postpartum depression. In Miller L (ed.), Postpartum Psychiatric Disorders. Washington DC: American Psychiatric Press, 1999: 143-62.

Stuart S, O'Hara MW (1995). Treatment of postpartum depression with interpersonal psychotherapy. Arch Gen Psychiatry, 52:75-76.

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Sullivan HS (1953). The interpersonal theory of psychiatry. New York: Norton.

Thase ME, Greenhouse JB, Frank E, Reynolds CF III, Pilkonis PA, Hurley K, et al (1997). Treatment of major depression with psychotherapy or psychotherapy- pharmacotherapy combinations. Arch Gen Psychiatry, 54:1009-15.

Walker K, MacBride, Vachon M (1977). Social support networks and the crisis of bereavement. Soc Sci Med, 11:35-41.

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88 Section 4: Attachment

Attachment Patterns and their Contribution to Child Development and Adult Functioning

Author: Sarah Landy, Ph.D., Developmental Psychologist

Introduction and Definition of Attachment During the 20th century the pendulum has swung back and forth between seeing either the environment or genes as primarily determining a child’s developmental outcome. However, today scientists understand that development is the result of a constant interplay between nature (genetics) and nurture (environment). Thomas Boyce (2002) has talked about a “symphony of causality”, Shonkoff and Phillips (2000) have called it “not nature versus nurture but nature through nurture”, and Sameroff and Fiese (2000) have used the transactional model to describe the constant interplay across time that occurs between the child’s genetic characteristics and the environment in which the child lives that together create developmental outcomes. As was described in “Improving the odds: Healthy child development” one of the most important contributors in the child’s environment is the interactions the child has with primary caregivers and the patterns or quality of the relationship that she develops as a result of these interactions. This relationship has been called attachment and 30 years of research in this area have made significant contributions to knowledge on how it affects normal child development as well as on how problems with attachment can lead to the development of psychopathology in children and adults.

A. Types of Attachment Patterns Across the Life Span

Patterns of Attachment in Infancy In North America and the rest of the developed world it is rare for children to be unattached. However, a few children who were raised in institutions and had no consistent caregiving, who had multiple foster home placements, or who suffered from extreme maltreatment in the early years may not develop an attachment to another human being. Almost all other children develop attachment relationships to their caregivers although the quality of those relationships may differ significantly. There are four different patterns of attachment with 3 described as “organized” because they represent an organized strategy that the child develops in response to the interactional patterns of their caregivers and one as disorganized because the nature of the interactional patterns of the caregivers have been too chaotic or unpredictable for the child to be able to develop an organized or coherent pattern of responding to them.

Organized Patterns of Attachment in Infancy “Mother” is used in the following descriptions of the patterns of attachment because she is usually most involved in the caregiving in the early months and most of the attachment research has considered the child’s attachment to his mother. However, by 12 months the infant usually has attachments to at least 3 different attachment figures. Research suggests that the attachment relationship with the primary caregiver (usually the mother) may be most important although a secure relationship with any caregiver can contribute

89 to resilience even for children living in difficult and stressful environments including chronic poverty or lack of availability of adequate housing and employment. How different relationships coalesce into “working models of attachment” or representations is somewhat unclear although there may be a hierarchy of relationships with some more important than others. These more important relationships usually include the parents and other caregivers that the child spends a great deal of time with such as a daycare teacher, nanny, or grandparent. The organized patterns of attachment that are seen in infancy are described below.

Securely attached infants (60%)  Explore around the “secure” base of the mother.  Play interactively with mother and may show her things and usually maintain a connection by touching or visually checking in to make sure she is still present.  Respond differently to a stranger than to mother and may appear anxious or apprehensive around a stranger.  Seek proximity immediately from the mother if he becomes upset, hurt, ill, or frustrated.  Calm down quickly if upset after comforting by the mother and can quickly return to playing and exploring the environment.

Insecure/avoidantly attached infants (18%)  Explore toys and room but without reference to mother.  Apparently not distressed by separation and may not appear to be upset if hurt, ill, or frustrated.  Does not seek out mother or other adult for comforting.  May approach a stranger as much as the mother.  Does not get distressed by separation so does not need to be calmed afterwards.  May snub or ignore mother at times.

Insecure/ambivalent/resistant infants (12%)  Has difficulty exploring toys or the room because constantly preoccupied with the mother.  May be demanding or fuss and cry a lot even in the presence of the mother during play interactions.  Shows extreme distress if separated from the mother.  May seek and then refuse or resist comforting showing ambivalence towards the mother.  May remain upset for some time after being hurt or separated and not settle down enough to resume an activity such as playing or exploring.

Disorganized/Disoriented Patterns of Attachment in Infancy A meta-analysis by van IJzendoorn, Schuengel and Bakermans-Kranenburg (1999) indicated that as many as 10-14% of infants in normal populations and 25% in high risk populations meet criteria for a disorganized or disoriented pattern of attachment. This classification is related to the parent’s signs of disorientation and even dissociation in discussing traumatic events such as loss by death, or physical, emotional or sexual abuse that are believed to be associated with unresolved trauma. The Adult Attachment Interview (AAI) has been used in order to identify traumatized adults who display what have been called Hostile/Helpless states of mind. It has been found that these Hostile/Helpless states of mind explain a significant portion of the variance and capture

90 “indicators of a pervasively unintegrated state of mind and are linked to disorganization in the infant” (p. 39) (Lyons-Ruth, Yellin, Melnick, & Atwood, in press). Infants with disorganized patterns of attachment have not been able to develop a coherent or organized way of responding to their caregiver or to deal with separation from her because of the inconsistent, chaotic and consequently unpredictable caregiving they have received. Child maltreatment and serious parental psychopathology is often associated with this pattern of attachment. Infants with these classifications often show the following types of behaviours in interactions with their mothers.  May try to stay close but hit mother at the same time or avert head when approaching her.  After separation may seem dazed, confused, and frightened and appear to freeze in one position.  May show other signs of dissociation such as a trance-like response or disoriented wandering.  Repetitive, stereotypic gestures or emotions.  May be indiscriminately friendly with strangers.  May be withdrawn and show little emotion when relating to the mother and stranger.  May show role reversal and try to comfort or control mother rather than being comforted or contained by her.

Typically children are assessed as being in one of the organized classification and the disorganized category is added if the signs of disorganization described above are identified (e.g. avoidant/disorganized).

Patterns of Attachment in Early Childhood During the toddler and preschool stage children with various attachment patterns show many of the same behaviours as they did in infancy with parents and other caregivers as well as in social situations with other children and adults. Children with insecure patterns and particularly those with disorganized patterns may have considerable difficulty adjusting to daycare and school while children with secure attachment usually do well, are well liked, and are able to problem-solve when difficult situations occur.

91 ATTACHMENT CLASSIFICATION AND LATER BEHAVIOURS ASSOCIATED WITH THEM

Securely Attached Insecure/Avoidant  Cooperative with parents and other  Tends to be noncompliant and to disobey adults. rules.  Affectively positive.  Isolated from group, does not seek  Socially competent and seeks out friends. interaction.  Has good self control of emotions and  Can be excessively angry and hostile but behaviours. has control in non-social situations.  Can problem-solve with confidence.  May be quite competent in many areas of  Seeks help if overwhelmed or a problem functioning. is beyond their competence to solve.  When in pain or upset withdraws and  Easily comforted if upset. does not seek help.  Manages well away from parents.  Manages well away from parents

Insecure/Ambivalent Insecure/Disorganized/ Disoriented  May have behavioural difficulties and  Usually has behavioural difficulties and is fluctuate between being tense and unpredictable. controlling.  Is often both a bully and a victim with  Tends to be fearful and anxious. other children.  Poor social skills, tends to be dependent  Poor social skills. on others.  Low frustration tolerance and self control.  Impulsive, low frustration tolerance.  Very disorganized and disoriented in  Less confident, assertive and able to approach to problems. problem solve.  Often needs specialized caregiving.  Needs sensitive caregiving, often difficult  May miss parents and appear frightened to calm down. when with them as well as away from  Often misses parents and seems them. helpless and frightened as a result.

Patterns of Attachment in Later Development In adolescence and adulthood patterns of attachment are similar to those of children in many respects and autonomous (secure) adults are comfortable with emotions and value relationships and seek them out. They seem to be at peace with and to understand their past experiences with parents and to have come to terms with them even if they were difficult. They also understand how these experiences have influenced their personality and can affect the way they parent. On the other hand, dismissing (avoidant) adults do not value relationships. They are not interested in the emotional aspects of relationships or other experiences and tend to avoid exploring or discussing them. As well, they dismiss any idea that their early experiences affected them and may idealize their early caregivers or not have any memory of them. Preoccupied (ambivalent/resistant) individuals want relationships but see them as unpredictable and strive for greater closeness. They are preoccupied with their past and/or current relationships with their parents and frequently continue unsuccessfully trying to get the kind of consistent nurturing they crave. When people are classified as unresolved (disorganized) distorted, disorganized thought patterns and angry and frightened

92 emotions are present. There is evidence in interviews or discussions of their past history that they have not resolved the death of a loved one or any trauma or abuse that they experienced growing up. They often also have difficulty giving a coherent, logical, or sequenced account of their current life experience or situation.

Child’s Attachment Mother’s Attachment

Secure (B) …………………………………… Secure/autonomous (F) Insecure/avoidant (A) ……………………….. Insecure/dismissing (Ds) Insecure/ambivalent (C) ….…………………. Insecure/preoccupied (E) Insecure/disorganized (D) ………….……….. Insecure/unresolved (U)

Key Points - TYPES OF ATTACHMENT

 Be aware of the importance of attachment quality between parents and their children.  Be particularly aware of how unresolved trauma in parents and disorganized attachment in children can lead to serious behavioural difficulties in children and later psychopathology.  Understand that there are different interactional patterns associated with the various classifications of attachment.

B. Patterns of Attachment and Associated Parenting

Associated Parenting in Childhood Children with each of these patterns of attachment have been found to have received a particular style of parenting and particularly certain reactions when they are hurt, upset, ill, and frustrated.

A child who is securely attached will have consistently received comforting particularly when he is hurt, ill, upset, frustrated or lonely. Just as importantly he will have his feelings such as anger, jealousy, sadness, and fear accepted and have been consistently helped to manage them and express them appropriately. The caregiver will be sensitive to the child’s cues, careful not to overwhelm the child, and not too intrusive or directive. Positive feelings towards the child and genuine love and joy in interactions will be evident. The child will be kept safe but be allowed to be as separate and autonomous as possible while exploring the environment. In summary, the caregiver is accessible, but not overwhelming; in touch with the child but not overbearing or too directive. Such interactions provide a delightful dance in which parent and child attune to each other’s emotional and behavioural agendas.

93 A child is likely to become insecure/avoidant when his caregiver ignores negative emotions and consistently does not respond when the child is upset and crying. The caregiver may do quite well with teaching tasks and even with setting limits but may be hostile and rejecting of any emotions that arise as part of these interactions. In summary, caregivers of avoidantly attached children tend to be accessible in some aspects of interaction but are insensitive and do not read the child’s cues in others, particularly those that relate to neediness. In extreme cases they may be neglectful of all the child’s needs for nurturing and be emotionally abusive.

The insecure/ambivalent/ resistant child is likely to have had a caregiver who is very anxious about the child and can be overprotective and interfering at times. The caregiver tends to be inconsistently responsive and available, sometimes responding to the child, while at other times not being able to respond appropriately or to give the child the support he needs. The child does not learn to avoid or to stop expecting nurturance during times of upset and yet cannot depend on getting his needs met. When frustrated the caregiver is likely to become impatient and angry and scream at or even hit the child.

The disorganized/disoriented child has generally experienced caregiving in which she is unable to predict what will happen. At times the caregiver presents as frightened and unable to manage the situation, including the child, while at others can present as frightening displaying hostility and anger. These patterns result in the parent being unable to deal with conflict with their child with some withdrawing from it and appearing frightened by it while others are at increased risk for outbursts and abusive behaviour towards the child. This places the child in an irresolvable conflict when the attachment system is activated as the child simultaneously wants to go to the parent for comfort but is afraid to do so. Such caregivers may be depressed, alcoholic, drug dependent, abusive or traumatized with a significant level of psychopathology. This may include character disorder, anxiety disorders, sociopathic tendencies or even psychosis. However, although these patterns are frequently seen in chaotic multi-problem homes where children are exposed to violence and abuse, they are also found in lower risk homes. Sometimes the caregiving patterns are relatively subtle and low key but are always confusing with the caregiver sometimes appearing frightened or frightening. These patterns of parenting are related to parents’ unresolved loss or trauma. The unresolved loss and trauma, particularly if it occurred in the early years contributes to difficulties in a number of areas of functioning as well as parenting including withdrawal from interactions with others or the tendency to place themselves and the child at risk through being involved in a dangerous lifestyle resulting in frequent retraumatization.

Recently, the behaviours of parents with unresolved loss and trauma have been studied extensively and their children have been followed from early childhood into adulthood. When parents displayed frightened or frightening parenting behaviour with their children in early childhood, 85% of their children showed severe behaviour problems and/or various types of psychopathology as adults. Bronfman, Parsons, and Lyons-Ruth (2000) have developed a coding system for scoring parent-infant interactions that are showing these atypical caregiving behaviours called the Atypical Maternal Behaviour Instrument for Assessment and Classification (AMBIANCE). A summary of the categories is set out below.

1. Affective communication errors: These include incongruence between voice tone and message, facial expression and voice tone or message, or incongruent physical behaviours and failure to respond to infant cues or signals (e.g. uses

94 friendly voice with threatening pose, does not comfort a crying or distressed infant and may laugh when their infant is crying or distressed).

2. Role/boundary confusion: Difficulty separating infant’s needs from own needs or treating child as sexual or spousal partner (e.g. speaks in hushed, intimate tone to the infant).

3. Frightened/Disoriented behaviour (e.g. exhibits frightened behaviour, and handles infant as if he is inanimate, sudden unexplainable change in mood).

4. Intrusiveness/negativity: This can be evident in physical or verbal communications or by exerting control over objects (e.g. uses loud, sharp, or angry voice, removes and withholds toy from interested child when she wants it).

5. Withdrawal: Creates physical distance or uses verbal communication to maintain distance (e.g. holds infant away from their body with stiff arms).

On the basis of the scores obtained on this scale a parent will be evaluated according to her level of disrupted communication with her child with high numbers of these behaviours considered as one of two subtypes of disrupted communication: Intrusive/Self-Referential (frightening) subtype or Helpless/Fearful (frightened) subtype.

Key Points – PARENTING AND ITS CONTRIBUTION TO ATTACHMENT

 Be aware that it is possible to identify patterns of attachment during the child’s visit to the office.  This can occur by observing how a parent responds when her child is upset and also by some of the comments she makes when she is asked about her infant/child’s behaviour and progress.  How the child responds in the office to interactions with the physician will also give some suggestions about their relationship outside the office.

C. Continuity of Patterns of Attachment Many people, as they pass from infancy, through early childhood, adolescence and into adulthood, maintain the same attachment style. However, changes can occur with secure attachments becoming insecure and insecure becoming secure when certain life experiences intervene. The percentage of people who change classifications vary in different populations, with those in high risk situations, because of their less predictable life styles, being more likely to change.

One of the ways in which attachment classification continues across time is by the forming of internal representations in infancy and early childhood that contribute to the behavioural patterns. It has been shown that working models of attachment or the ideas the person internalizes about themselves and other people, influence how an individual sees the world, particularly other people, as well how he perceives himself in relation to it. Children who are secure are more likely to perceive and remember events as more positive and to view the role of others in ambiguous situations as benign and nonthreatening. On the other hand, children who are insecurely attached see the same

95 event and the children involved in it as being rejecting and hurtful. Children who are disorganized in their attachments tend to see the world as frightening and threatening and find it difficult to trust others.

In relatively stable situations, where patterns of caregiving typically remain consistent, as many as 80% continue with the same attachment classifications. However, in populations of parents who experience many changes in life circumstances, as few as 40% may stay in the same attachment classification over time. Attachments can change from secure to insecure when negative life experiences impact on the parents’ sense of security and consequently on their interactions with their children. With adults attachments can change from secure to insecure as a result of experiences such as loss due to death, divorce or even long periods of unemployment that threaten the family’s security. Attachments can also go from insecure to secure when situations stabilize or people get into supportive, meaningful, new relationships. Other people change from insecure to secure by being in successful therapy and by reintegrating negative memories into more positive narratives and forming resolved or understandable mental representations of past events.

Because the results of having disorganized attachment are most clearly demonstrated to cause behaviour problems and psychopathology approaches to enhancing the interactions of parents with unresolved loss and trauma have become a priority of early intervention programs.

Parents’ Perceptions or Attributions of their Child Another area of current research about attachment has been to consider how parents’ experience growing up and their relationship with their parents and aspects of the child’s personality contribute to the parents’ attribution of their child. Whether a parent’s perception is positive and realistic or negative and distorted has a significant influence on how she interacts with and parents her child. A commonly used measure of these perceptions or attributions of the child is the Working Model of the Child Interview (Zeanah, Benoit, & Barton, 1995). In the interview, parents answer questions about how they perceive their child; how they would describe the child by, for example, saying who he looks like and what kind of personality he has. On the basis of these responses parents are described as disengaged, balanced, or distorted in their attributions of their child.

Caregivers assessed as balanced value their relationship with their child and give rich, generally positive descriptions of them. They also see their relationship with their child as affecting their child’s behaviour and development. When interviews are assessed as disengaged/impoverished there is evidence of the caregiver’s disengagement or lack of involvement with the child. The parent shows emotional aloofness, distancing, and sometimes aversion to the child. The caregiver may also be hostile and rejecting. The caregiver who has a distorted view of the child presents as distracted and confused about him or her. There may be role reversal with the child as well as self involvement. There seems to be no real understanding of the child and a number of inconsistent and conflicting statements are evident. These classifications relate to the parent’s attachment to her child in this way.

96

Mother’s Attachment Working Model of the Child

Secure/autonomous ……………………………..Balanced Insecure/dismissing……………………………...Disengaged/impoverished Insecure/preoccupied ….………………………..Distorted Insecure/unresolved ………….…………………No category

Other Parent Characteristics Related to the Child’s Quality of Attachment In recent studies, while characteristics of the interaction have been found to be related to the child’s attachment classification the parent’s reflective function or capacity to understand the mind of the other in order to make meaning of behaviour has been found to be significantly related to the child’s attachment classification. In fact, van IJzendoorn (1995) in a meta-analysis of studies conducted to evaluate the contribution of various factors to attachment security found sensitivity only contributed .32 of the variance. On the other hand a much higher effect size of .81 was found between parents’ reflective function and child attachment security (Slade, 2002; Slade et al, 2002). This capacity develops from early interpersonal experiences, particularly being known or understood by one’s caregivers. The capacity for reflectivity affects the parent’s ability to understand the mind of their child and thus to show understanding and empathy for their emotions and behaviour.

Intergenerational Transmission of Attachment The development of the Adult Attachment Interview (AAI) which assesses an adult’s “state of mind in respect to attachment” has the intergenerational transmission of attachment classifications from adult to child to be studied. In general, high levels of concordance between the parent’s and her child’s attachment, far above those expected by chance, have been found. In studies that administered the AAI to mothers during pregnancy and the Strange Situation to their infants at one year, researchers have found that AAI classifications (secure vs. insecure) of mothers predicted subsequent infant attachment patterns between 75%-80% of the time (Benoit, 1991; Benoit & Parker, 1994; Fonagy, Steele, & Steele, 1991; Steele, Steele, & Fonagy, 1993). Similar concordances have been found when the two measures are collected concurrently in time (Ainsworth & Eichberg, 1991; van IJzendoorn, Schuengel, & Bakermans- Kranenburg, 1999; Zeanah et al, 1993), or when the infancy data is collected years earlier than the AAI (Grossman et al, 1988; Main, Kaplan, & Cassidy, 1985). The intergenerational associations are somewhat smaller for fathers and infants being about 65% (Main et al, 1985; Steele et al, 1993).

This transmission has been conceptualized as passing from the parents’ working models of attachment as portrayed in the AAI, which guide their view of their infant and their behaviour in interactions with their children which in turn influences their children’s expectations of self and other and their behaviour in the Strange Situation (Steele & Steele, 1994). This demonstration and understanding of how patterns of parenting can be repeated across generations may be one of the most important contributions made by attachment theory towards understanding child behaviour patterns, particularly in at- risk populations, and especially in families who abuse and neglect their infants. This means, of course, that in some way the attachment classification and its characteristic representations and behaviours are passed across the generations

97 through the caregiving a parent provides for her child. Various aspects of the parents’ situation influence how the parent perceives the child. Parents’ experiences with their own parents contribute significantly to these perceptions and in turn their view of the child contributes to how they behave.

How Attachment Passes Across Generations

*Parent’s Working Parent’s View of Parenting Behaviour Attachment Models of Self and the World classification of child Attachment

Parent forms These working These views of self These parenting working model of models of and other affect behaviours result in attachment in attachment parenting behaviour the child having the childhood as a influence how she with her child. same attachment result of her sees the world and classification as the experience of being the people in it parent. parented. including her child.

* Should be read from left to right to indicate how attachment passes across generations

Key Points – CONTINUITY OF ATTACHMENT PATTERNS  It is important to understand that attachment patterns tend to pass from parent to child.  This occurs because parents form views or representations of their children that influence how they behave with them.  Although there is a tendency for attachment quality to continue it can be changed from insecure to secure if the parent receives support and intervention especially when her child is young.  Giving parents information about their child’s development can be very helpful to help a secure attachment develop.

D. The Importance of Attachment Quality for Development As noted above it would seem that the quality of a young child’s attachment can affect his relationships with others throughout life (Landy, 2003). Young children with secure attachments are more likely to form friendships and to be well liked by other people. Insecurely attached children, on the other hand may either avoid friendships or be very demanding and conflictual in their relationships with others. Securely attached children are also more likely to respond to other children’s distress in helpful ways. Adults with secure attachments are more likely to form long term, fulfilling relationships with others in which comfortable negotiation and joint activities can occur.

A child’s attachment classification also affects her capacity for self-regulation of negative feelings including fear, anger, sadness and jealousy. In fact, attachment theory has sometimes been described as a theory of emotion regulation as much as a theory of socialization. Securely attached children have been described as being more emotionally expressive and as having better self-control. They are also more affectively positive and less dependent on adults for regulating their intense emotions. They are

98 able to communicate negative affect in socially appropriate ways and as a result are more likely to receive a sensitive response. Insecure children may act inappropriately when they are upset, frequently being more angry and hostile or fearful and sad. Since they are often impulsive and tense they can be more difficult to care for, and more likely to be rejected by caregivers.

Although security of attachment does not directly affect level of intelligence it does appear to influence how children pursue challenging cognitive tasks. Securely attached children do not need to expend as much energy on monitoring and dealing with attachment issues which frees them up for dealing with learning activities. As a consequence they tend to be more self-confident, enthusiastic, persistent and effective in problem-solving situations. Although not the same as intellectual development, efficient problem-solving can allow a child to learn material and strategies necessary for adequate school and academic achievement. Attachment research also suggests that attachment may influence information processing and that secure individuals may be able to more flexibly attend to stimuli. On the other hand, insecure individuals may only selectively attend to and remember certain information ignoring other.

Although it is not proven, research suggests that if a child is chronically stressed, without the support of a nurturing caregiver, this may have significant and detrimental effects on aspects of the biochemistry and neurological development of the child, resulting in some cases in extreme hypersensitivities to certain stimuli. It is also likely that if the stress is intense enough the children’s immune system may become depleted. In the largest study that has been conducted measuring cortisol levels in the Strange Situation, Spangler and Schieke (1998) found that resistant infants showed the largest increases in cortisol levels, while avoidant infants showed them only if they were temperamentally fearful. Gunnar and colleagues have also conducted studies in which the infants’ attachment classification was related to cortisol levels and behavioural responses to stressful situations. For example, when children were confronted by a boisterous clown, only the insecurely attached, inhibited toddlers showed elevations of cortisol (Nachmias et al, 1996; Spangler & Schieche, 1998). Similar findings were recorded when infants received inoculations (Gunnar et al, 1996). While Hertsgaard et al (1995) found that disorganized infants were most likely to have elevated levels of cortisol. Some studies have not found a link between security of attachment and cortisol levels following stressful situations. However, it may have been that the cortisol samples were not taken late enough to capture the peak responses (Gunnar et al, 1989; Gunnar, Colton, & Stansbury, 1992).

Key Points – THE EFFECT OF ATTACHMENT ON DEVELOPMENT  Attachment affects children’s development in a number of areas, particularly their emotional and social development.  It needs to be considered as well as the child biological contribution in order to understand children’s current adjustment and behaviour.

99 E. Assessing Attachment in Infants, Young Children, and Parents The measures that have been developed by attachment researchers to assess attachment in the child and parent are lengthy and required extensive training making them inappropriate for medical practice. However, certain key indicators can be observed during routine prenatal and postnatal visits and subsequent checkups or when the child is given vaccinations. These are: 1. Signs in the interaction of the parent and child during examination of the child, vaccinations, or other medical procedures. 2. Discussion with the parent about the child and the attributions that are made about the child’s development or behaviour. 3. Comments made by the parent to the child or the physician that indicate her level of self reflectivity, understanding, or empathy for the child. 4. Any indications given by the parent that memories of trauma have been activated by the birth of the baby or during later developmental stages when the child is becoming more independent and challenging. These 4 areas of assessment are likely to overlap and if a parent is having difficulty in any one of them she is likely to be having problems in one or other of the others. Also the characteristics of the child are likely to be contributing significantly to how the child and parent present in the practice setting.

Interaction of the Parent and Child The main areas for observation for both parent and child are: Affect and emotional responses to one another (e.g. generally positive and loving, hostile and angry, or depressed).  Responsiveness of parent and child to each other (e.g. eye contact occurs and there is a two-way communication between parent and child or they seem to ignore each other).  Affection shown to each other (e.g. parent may kiss the child and child may look at mother for support or the parent seems oblivious of the child).  Synchrony and attunement (e.g. there is a sense of the parent and child being in tune with one another).

Parent’s Attributions of the Child During discussion about the child the following signs of attachment quality should be considered.  Does the parent use positive or very negative comments in discussing her child?  Does she indicate that the child is a joy or a burden?  Does the parent talk about the child as reminding her of someone positive or negative in her life?  Does the parent seem overwhelmed by the child or does she report some positive behaviours or developmental milestones that she has observed?

Parent’s Level of Self Reflectivity and Empathy for the Child This aspect of the parent’s relationship with the child will be expressed through the understanding the parent shows for the developmental stage the child is at and the emotions the child may be experiencing. Also if the parent has some degree of self reflectivity she may express some uncertainty about her parenting of her child and concerns about some of the things that are going on in her life and may ask for information or advice. Some signs of lack of self reflectivity or empathy for the child may include:

100  Blaming the child if he is upset and not being able to understand what he may be concerned about, or that he may be tired or frightened.  Not understanding the developmental stage the child may be at and seeing normal behaviour as the child having an “attitude” or being spoilt.  Seeing the child as representing someone very negative in her life (e.g. the father who is in jail).  Only seeing things from her own point of view (e.g. “how could you be so selfish crying when I am tired?”).

Evidence of Unresolved Trauma It may be more difficult to identify that a parent is experiencing the effect of unresolved trauma unless it is quite extreme but it may be recognized if the parent presents as very incoherent in discussing her child or shows extreme rejection of the child. For example, if a mother describes her child as intentionally hurting her by kicking during pregnancy or as being very aggressive and frightening as a young child. The parent may also show signs of dissociation or of “spacing out” in extreme cases and show clear signs of being frightened or frightening with her child. Less frequently the parent may describe having flashbacks of traumatic events or report finding it hard to sleep because of nightmares about past events. She may also describe incidents when she lost control with the child. In the most extreme situations the parent may show signs of clinical depression, addiction, psychosis, or character disorder.

Key points – ASSESSING ATTACHMENT  Although it is difficult to assess attachment in the office any really dramatic signs in the relationship that could lead to disorganization in the child should be followed up.  It is important to consider the four aspects of the relationship: interactional behaviours, attributions of the child, empathy for the child, and signs of trauma or psychopathology in the parent in considering the relationship and attachment of the child.

F. Intervening to Improve Attachment in Young Children

Intervening During Pregnancy It appears that negative attributions of an infant can be constructed by parents during pregnancy. These may occur because of difficult circumstances, or because the baby is not wanted. A single or teenage mother may be concerned about her ability to provide or care for the infant. Sometimes the position of a baby in the family may trigger unconscious feelings about a parent’s own difficulties in being in a particular birth order. Sometimes, how the mother feels physically can influence her view of the baby, perhaps she is unable to keep nourishment down or the baby is very active and the kicking is painful. In other instances, the parent may have difficulty imagining the fetus as a person at all, and in extreme cases the mother may deny she is pregnant until the birth of the baby. It can be helpful to ask the mother about her baby during prenatal visits and to correct any misperceptions that may be present (Landy, in press). Some of the strategies to encourage this to happen can include:  Having the mother talk about her thoughts and feelings about the baby and helping her correct any misconceptions that may already be in place.

101  Wondering about what the baby’s name might be and why the name might be chosen.  Discussing the gender of the baby, specifically if it is already known and what either gender would mean to the couple if it is not known.  Discussing any anxieties and answering any questions the parents might have.  Discussing the fetus’s movements and giving parents information about what he or she can see and hear in the womb. For example, explaining that the baby can already hear the parents’ voices and how the tone of voice may affect him or her.

In addition, it will be important to check about prenatal care and to make sure that the mother will have support during labour and that it will be someone she would like to have with her. These kinds of discussions give parents the opportunity to talk about any anxieties, and can focus their thoughts on the baby and who he or she might be. As well, they give the physician an opportunity to subtly correct any misconceptions and confirm parents’ interest in and concern for their baby. They may also help identify any attributions that would indicate the infant might be a risk for abuse and neglect and allow for careful monitoring after the birth.

Intervening in the Neonatal Period Once the baby is born, it is possible to learn more about parents’ attributions of their infant and provide information about the newborn’s remarkable capacities for responsiveness, perceptual awareness, and readiness to attach to parents. Sometimes showing the parent what her newborn is capable of doing such as seeing things at about 10-12 inches away or turning to his mother’s voice can be helpful. Discussing parents’ observations of their newborn and answering any questions about behaviours can be invaluable. Again any misattributions of behaviours can be corrected. For example, changing ideas about infant crying as meaning “I don’t like you” to meaning “I really need you to hold me”, can be demonstrated by having a parent hold the crying baby in order to comfort him.

Intervening in the Early Years Reframing and Speaking for the Child Reframing has been used for several years in family therapy in order to give a different meaning to the behaviour of family members. It is a technique that has also been used to redefine descriptions of, for example, difficult temperament characteristics or behaviours. For instance, the hyperactive child can be described as the busy child; the child who tends to get into everything as the curious child, and the irritable child as the expressive or emotional child. Negative attributions can also be changed by talking from the child’s point of view and explaining behaviours from a developmental perspective. When a child cries because the parent leaves the room, a parent may define the behaviour as being spoiled. A positive reframing would explain to the parent that the child trusts her because she looks after him so well and feels sad and uncertain when she leaves. The developmental significance of having a secure attachment can also be explained. This can be an especially important approach when a baby is becoming a toddler and is having tantrums and pushing to do things her way. Helping the parents to reframe this as an important development phase in which their child is becoming his own person with a mind of his own can be helpful. This kind of reframing may also provide an opportunity for a discussion of how the parents feel about a new developmental phase and how they can support their child to negotiate it.

102 Developmental Guidance The work of Brazelton and colleagues is an example of developmental guidance. It involves the physician in providing information or suggestions about a particular child or developmental stage that the child is going through. Information about the infant or young child is gathered through the medical and developmental history, questions or concerns parents have, and observation of the parents interacting with their child. The physician may discuss with the parents aspects of the child’s developments and their capabilities and any delays or limitations. The aim is to adjust representations of the child to fit the current reality of his or her capabilities and to correct any misconceptions. Suggestions are made to parents about how best to adapt their interactions to their child and how they can help encourage his development. In his book Touchpoints: Your child’s emotional and behavioural development, Brazelton (1992) suggests that this kind of approach could be used at critical points in a child’s development by a physician in order to support parents and to update their perceptions of their child. Some of the developmental “touchpoints” that are suggested are: pregnancy, birth, 6-8 weeks, 9 months, one year, 18 months, 2 years, 3 years, 4 years, 5 years, and 6 years.

Encouraging Problem-Solving Bugental et al. (2000) developed this approach for use in a prevention program with parents at risk for abuse. At the beginning of each visit parents report problems that they are having with their child. They are asked what they think causes the problems. The intervenor continues to ask for suggestions until the parents come up with one that does not blame the child and does not suggest intent on the part of the child to threaten or to be hostile towards the parent. Some questions that can be asked to facilitate the process include, “Did he intend to do it?”, “Do you think he knew what the effect of his behaviour would be?”, “Was there anything else that led to what the child did?” Then parents are asked to come up with some ways to solve the problem, and to try them out before the next visit. On the following visit discussion takes place about how successful their strategy was. If necessary, the strategy is refined or a new one is suggested for use before the next visit. If the strategy was successful parents will be asked about another problem and the same sequence is followed. In this approach misattributions are not pointed out. For example, if a parent discusses a child who is refusing to eat certain foods, she will be asked to come up with a reason. It might be that the child finds the food hard to swallow or does not like having to sit still to eat. A suggestion such as having the child sit at the table for a shorter time and including a food the child likes might be strategies the parent could try with the child.

Dealing with Common Developmental Issues Some of the problems that parents of young children are most likely to confront include:  Issues with eating and sleeping  Toilet training  Dealing with difficult behaviour and discipline issues  Coping with tantrums, fears, and aggressive outbursts  Dealing with separation anxiety particularly if the child has started to attend childcare  Difficulty concentrating and playing alone

When these issues are within normal limits and appear to be age appropriate parents can be given information in printed form, topics can be discussed, and appropriate ways to deal with the issues encouraged. Parents may need support to be firm or to allow

103 certain behaviours without continually setting limits on every behaviour. Sometimes parents go to the opposite extreme of the parenting they received themselves. For example, the parent who was raised with rules they found to be too strict may set no limits, or the parent who was constantly pushed to succeed may not encourage their child to try to do well. Discussions about these tendencies and information about the importance of limits or encouragement can help change interactions. Another approach can be to have a parent keep a record of when the challenging behaviour occurs and what the circumstances are. This helps the parent focus on what is really happening and may help her begin to identify some reasons for the difficulty the child is having. On the other hand, the parent may find that the issue is not as big as she had believed and this may allow her to relax.

Referral to Other Services When there is concern about the attachment classification of the child and especially if it seems to be “disorganized” or if the parent is showing signs of having unresolved trauma or psychopathology it is important to refer the parent to an early intervention program in the community. These include:  Parenting groups that provide parent support, information on child development and parenting strategies.  Healthy Babies, Healthy Children Program that can provide a home visitor to support the parent in the home.  Parent drop-in centres and parenting resource programs that can be used by parents and can provide support and parenting information. For parents who are overwhelmed or have symptoms of depression, anxiety, or obsessive compulsive disorders in addition to medication there are programs that can support parents to overcome these conditions with strategies that encourage them to calm down and see things in a more positive way. Many communities have clinics that provide individual and group cognitive-behavioural therapy and/or mindfulness-based cognitive therapy to teach new ways of thinking and to bring emotional reactions under conscious control (Linehan, 1993; Segal, Williams, & Teasdale, 2002). Meditation groups may also be available. These approaches are very useful for parents who have difficulties with emotion regulation and with managing their children. Child protective services may need to be called when abuse or neglect is suspected.

Key Points – INTERVENING TO IMPROVE ATTACHMENT QUALITY  A great deal can be done by the physician during routine visits to encourage a secure attachment in the infant or young child.  There are a number of brief interventions that can be done in the office that can change an insecure attachment into a more secure one.  These include providing parenting information, listening to and supporting parents, and changing negative views of the child that may develop during pregnancy, in the neonatal phase, or during more demanding developmental phases.  When signs of more extreme forms of attachment disorganization are seen a referral should be made.

104 References Ainsworth MDS, Eichberg C (1991). Effects on infant-mother attachment of mother’s unresolved loss of an attachment figure or other traumatic experience. In C.M. Parkes, J. Stevenson-Hinde, & P. Marris (Eds.), Attachment across the life cycle (pp. 160-183). London and New York: Tavistock/Routledge.

Benoit D (1991). Intergenerational transmission of attachment. Symposium presented at the biennial meeting of the Society for Research in Child Development. Seattle, WA.

Benoit D, Parker KCH (1994). Stability and transmission of attachment across three generations. Child Development, 65:1444-1456.

Boyce WT (2000). Biology and context: Symphonic causation and origins of childhood psychopathology. Paper presented at the Millennium Dialogue on Early Child Development, University of Toronto.

Bronfman ET, Parsons E, Lyons-Ruth K (2000). Atypical Maternal Behavior Instrument for Assessment and Classification (AMBIANCE)-Manual for coding disrupted affective communication. Unpublished manuscript, Harvard Medical School, Boston, MA.

Bugental DB, Blue J, Cruzcosa M (1989). Perceived control over caregiving outcomes: Implications for child abuse. Developmental Psychology, 25:532-539.

Bugental DB, Kokotovic A, O’Hara N, Holmes D, Ellerson PC, Lin EK, Rainey B (2000). A cognitive approach to child abuse prevention. Unpublished manuscript, University of California, Santa Barbara.

Fonagy P, Steele H, Steele M (1991). Maternal representations of attachment during pregnancy predict the organization of infant-mother attachment at one year of age. Child Development, 62: 891-905.

Grossman K, Fremmer-Bombik E, Rudolf J, Grossman K (1988). Maternal attachment representations as related to patterns of infant-mother attachment and maternal care during the first year. In R.A. Hinde & J. Stevenson-Hinde (Eds.), Relationships within families: Mutual influences (pp. 241-260). Oxford: Clarendon Press.

Gunnar MR, Brodersen L, Nachmias M, Buss K, Rigatuso J (1996). Stress reactivity and attachment security. Developmental Psychobiology, 29:191-204.

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Gunnar MR, Mangelsdorf S, Larson M, Hertsgaard L (1989). Attachment, temperament, and adrenocortical activity in infancy: A study of psychoendocrine regulation. Developmental Psychology, 25:355-363.

Hertsgaard L, Gunnar M, Erickson MF, Nachmias M (1995). Adrenocortical responses to the Strange Situation in infants with disorganized/disoriented attachment relationships. Child Development, 66:1100-1106.

105 Landy S (2003). Pathways to competence: Enhancing the social and emotional development of young children. Baltimore, MD: Paul Brookes Publishing.

Landy S (in press). Early intervention with multirisk families: An integrative approach. Baltimore, MD: Paul Brookes Publishing.

Lyons-Ruth K, Yellin C, Melnick S, Atwood G (in press). Expanding the concept of unresolved mental states: Hostile/Helpless states of mind on Adult Attachment Interview are associated with atypical maternal behavior and infant disorganization. Development and Psychopathology.

Main M, Kaplan N, Cassidy J (1985). Security in infancy, childhood, and adulthood: A move to the level of representation. In I. Bretherton & E. Waters (Eds.), Growing points of attachment theory and research. Monographs of the Society for Research in Child Development, 50 (1-2, Serial No. 209): 66-104.

Nachmias M, Gunnar M, Mangelsdorf S, Parritz R, Hornick, Buss, K (1996). Behavioral inhibition and stress reactivity: The moderating role of attachment security. Child Development, 67:508-522.

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Steele M, Steele H, Fonagy P (1993). Attachment classifications of mothers, fathers, and their infants: Evidence for an intergenerational relationship specific perspective. Child Development. van IJzendoorn, MH, Schuengel C, Bakermans-Kranenburg MJ (1999). Disorganized attachment in early childhood: Meta-analysis of precursors, concomitants and sequelae. Development & Psychopathology, 11:225-249.

106 Zeanah CH, Benoit D, Barton M (1995). Working Model of the Child Interview: Scoring and coding manual. Unpublished Manuscript, Brown University, Providence, RI.

Zeanah CH, Benoit D, Barton M, Regan C, Hirshberg LM, Lipsitt, LP (1993). Representations of attachment in mothers and their one-year-old infants. Journal of the American Academy of Child and Adolescent Psychiatry, 32: 278-286.

My Relationship with Others The following examples describe the feelings in people have about relationships. Which of the three examples best describe your feelings? Please check only one response.

1. “I find that others are reluctant to get as close as I would like. I often wonder that my partner doesn’t really love me, or doesn’t want to stay with me. I want to get very close to my partner, and this sometimes scares people away.”

2. “I am somewhat uncomfortable being close to others; I find it difficult to trust them completely, difficult to allow myself to depend on them. I am nervous when anyone gets too close, and often, others want me to be more intimate than I feel comfortable being.”

3. “I find it relatively easy to get close to others, and am comfortable depending on them and having them depend on me. I don’t worry about being abandoned or about someone getting too close to me.”

Key and correspondence to attachment classifications 1. Insecure/Preoccupied 2. Insecure/Dismissive 3. Autonomous

From Hazan & Shaver (1987, 1990)

107 Interactional Signs of Attachment

Signs of a Secure Parent- Signs of an Insecure Parent- Child Attachment Child Attachment Parent  Holds child close.  Ignores or pushes the child  Frequently talks to child in a away. warm and loving way.  Rarely talks to the child or uses  Shows affection by hugging, a harsh voice and derogatory or touching child. terms.  Affect is positive with child  Does not show affection and and is not angry or depressed. seems to regard child as a burden.  Calms the child if she  Negative affect and may appear becomes upset. angry, depressed, or anxious.  May play with child as a way  If child is upset does not to calm him. comfort child and may call her  Talks to child with under- spoiled standing of what is going on in  Does not play with child or help her mind (e.g. it is hard when child do anything. you have to get undressed).  Shows no empathy for the child  Responds to the child’s cues or understanding of what may be and does not intrude on or tease going on in his mind (e.g. you are the child. always trying to annoy me).  May ignore the child’s cues or intrude on the child when she is looking away and is becoming overwhelmed. Infant/Child  Frequently looks at parent  Rarely looks at the parent’s and uses her as a “secure base” face or watches parent in order to to explore from or to keep her use her as a “secure base” safe.  Resists being held and may  Moulds comfortably and push parent away. snuggles into parent when held.  Cannot be comforted by parent  Is comforted easily be parent and will continue crying. if he becomes upset.  Affect is negative and child may  Affect is generally content appear to be angry, sad, or and positive and does not show frightened. anger or seem sad or anxious.  Child may be controlling or  No role reversal is present show other signs of disorganization and no signs of disorganization such as stilling, hitting or pushing or resistant behaviour. parent.

108 Nursing Perspective: Attachment

Author: Ann Alsaffar, RN

The nurse in the primary care setting has a unique opportunity to be able to assess the child’s relationship with parents/caregivers as she/he is brought in for various milestone check ups and other visits.

As the family is in the waiting room the nurse can observe their interaction. Most infants are now carried in a car seat which gives less opportunity for holding and closeness. Although you don’t want to wake a sleeping baby you can see if the mother keeps the baby close or engages the infant. Carried babies fuss less and are more attentive to their surroundings where they can observe their surroundings in the safe comfort of a parents lap.

The waiting room can be a good place for the nurses to sit with the mother and talk to the mother in a more informal way all the while observing the interaction. Although office space is valuable, it is a good idea to have a quiet private area where a mother can breastfeed without having to occupy an examining room. This way the nurse can observe the breastfeeding technique and perhaps give an impromptu lesson if necessary. A new mother may find she is totally frustrated with breastfeeding and may give up when a few minutes of a nurses’ time and reassurance was all she needed. Patients often feel that asking the doctor what they believe to be non important questions will take up valuable time. The nurse has the luxury of appearing less hurried and more approachable for questions.

Attachment parenting brings out the best in the baby and the best in the parents and anything we can do to promote this is a plus for all concerned.

109 Section 5: Developmental Issues

Developmental Assessment

Author: Teresa Carter

Introduction Childhood developmental problems are common in the community. Family practitioners will frequently be consulted because of concerns in three main areas: gross motor development, behavioural challenges and speech and language development.

Significant delays in gross motor development are easily recognised by parents and readily presented, however disordered patterns of development secondary to neuromuscular conditions may not be as easily identified. There is a wide range of normal acquisition of typical gross motor milestones and the parent of a child of 15 months who is not yet walking can be reassured providing the acquisition of previous milestones has been within normal limits and of a normal pattern, and there is a normal physical examination. However, a child of the same age who is able to cruise around furniture when placed and able to take a few steps independently but who is unable to pull into a standing position would merit a careful physical examination and referral.

Behavioural challenges are common in the pre school years but are more frequent in children with significant developmental delays. The behavioural profile of a child will reflect the child’s developmental level; therefore, a child who is developing at a slower rate will have normal behavioural phases that last longer. This can be very challenging for parents and early links to community behaviour support services are extremely important.

The number of potential cases of primary speech and language delays is high. A review of studies in children (Law et al, 1998) gives median figures across studies of 5.9% for delays in speech, language or both. Natural history data indicates that most children with only an expressive language delay are likely to have spontaneous resolution in the pre school period. However, at the time of identification, it is not possible to predict which of the children with an expressive language delay are likely to have persistent problems. A poorer prognosis has been consistently identified for children with both receptive and expressive delays.

Concern about speech and language development is a common presentation in a child with a global developmental delay, also known as mental retardation (MR). These delays originate during the developmental period (i.e. conception through age 18 years) and result in significantly sub average general intellectual function with concurrent deficits in functional life skills. A diagnosis of mental retardation requires an intelligence quotient (IQ) score of at least 2 standard deviations (SD) below the mean IQ of 100 (i.e., IQ <70). Equivalent deficits in at least 2 areas of functional life skills or adaptive skills also must be present to meet the diagnostic criteria for MR. Adaptive skills encompass functional life skills including the domains of communication, self-care, social and interpersonal skills, self-direction and functional academic skills. The prevalence of mild MR (IQ 55-

110 70) is between 0.9 – 2.7%, a specific cause is found in only 25% of cases. Moderate to profound MR is much less frequent (0.3-0.4% of the population) and specific causes may be identified in as many as 70%.

When concerns are raised about a child’s speech and language development the question of an Autistic Spectrum Disorder (ASD) is often raised. Evidence suggests that early indicators of ASD can be detected in primary care settings even during brief meetings as described by Dr Zwaigenbaum (Zwaigenbaum, 2001). ASD is defined by impairments in three core areas of development: social interaction, communication (including non verbal communication) and behaviours and interests. Prevalence rates of the full spectrum have increased due to an increased awareness of the spectrum and to a broadening of the spectrum itself. A recent Canadian prevalence study of children aged 0-19 years indicated a PDD rate of 1 in 165 children (Chakrabarti & Fombonne, 2005). The Checklist for Autism in Toddlers (CHAT) was developed as a screening tool to aid early identification of children at risk for ASD; however evaluation reveals that it has poor sensitivity and cannot be recommended as a screening tool at this time although it can be seen as an aid to systemise an approach to identifying children at risk. The CHAT continues to be refined and other questionnaires are also being evaluated in the hope of enabling earlier identification of cases. At this time family physician’s clinical judgement and expertise in normal child development will be needed to identify the features which would merit referral of a child for further assessment.

When assessing a child for ASD one must first establish the child’s developmental level, as social skills development will be affected by the child’s speech and language skills. Information should be gathered from sources such as daycare staff and infant development workers who have had a chance to observe the child in social settings other than the home. This is important, as children with ASD may be affectionate, enjoying attention and physical play with their parents and other familiar adults. The key social deficit is a lack of understanding of another’s point of view, this is manifested as: poor use of eye contact, facial expression and body language to initiate and maintain social interaction. There is usually little effort made to share interests and peer relationships do not develop as expected based on the child’s developmental age.

The next area to be explored is to establish whether the child attempts to communicate by using words or gestures such as pointing. The child with ASD will not compensate for lack of language by using effective non verbal means of communication. Nor will the child spontaneously imitate others and incorporate this into pretend or imaginative play. Children with ASD who have speech may show unusual features such as echolalia (repeating back what others have said), pronoun reversals or odd intonation. They will have particular difficulty using the speech they have to participate in a two-way conversation.

Finally, repetitive and stereotypical behaviours should be explored. Children with ASD may show extreme distress if daily routines are changed or positions of objects in the home altered. They may have intense interests in one particular item or topic. Play skills are usually poorly developed and the children do not play with objects in a typical manner as they often become interested in one part of a toy. Stereotyped behaviours such as tip toe walking, hand flapping, rocking or finger flicking may be reported.

111 Signs of autistic spectrum disorder in preschool children  Failure to achieve language milestones  Loss of any language or social skills at any age  Lack of response to name being called  Rarely makes eye contact when interacting with other people  More interest on objects than in people’s faces  Does not point to show objects of interest  Lack of a social smile  Does not attempt to get parent’s attention  Does not respond or ignores attempts to engage in play, even when relaxed  Avoids or ignores other children when approached  Odd or repetitive movements of hands or fingers  Lacks interest in toys or plays with toys in an unusual way  Has compulsions or non-functional rituals

The Preschool Developmental Assessment The role of the developmental assessment is to establish whether there is a significant delay in development and to identify the areas of delay i.e. whether the child has an isolated delay of language development or is globally delayed. The physical examination combined with the developmental and behavioural profile of the child may lead to a possible diagnosis.

Taking a Developmental History Before taking the history it is useful to review information available pertaining to development such as previous well baby visits, growth measurements, birth and past medical history. These may be supplemented by asking the parent to complete questionnaires prior to the visit which gives information about developmental milestones and behaviour.

It is not only important to gather factual information, but also to establish a connection with the parent or caregiver and ‘read between the lines’. In discussing the child’s developmental problems you may obtain some hints about the parent/caregiver’s view of any services presently being offered, openness to new services or reservations about following through with treatment suggestions. It is useful to assess the family’s availability both practically as well as emotionally, available support systems and barriers to intervention.

A number of key areas of development should be covered in order to identify strengths and weaknesses and to identify where and when development has deviated from normal. These should include: gross/fine motor development; communication (expressive/receptive language, non-verbal communication, speech and pragmatics); adaptive/self-help skills; social relationships with adults/peers; play preferences/skills; self regulation/temperament; sensory systems. By exploring these areas one is looking for delayed vs. disordered development and regression or plateauing of development.

112 The Consultation

Current concerns Let the parents/caregivers tell their story in their own words. For each area of concern, you will want to understand when they first became concerned, how the awareness came about, what they did about it, how they perceive the concern now and their beliefs about causes and outcome. For areas that are of a more emotional or behavioural nature try to obtain some information about frequency, intensity and duration; things that make it worse/better and strategies used so far to manage the behaviour.

Pregnancy Let’s go back to the beginning... Key pieces of information include: any pre existing chronic health conditions in the biological mother (e.g., diabetes, mental health problems), acute medical issues (e.g. need for surgery, a car accident), or psychosocial factors (e.g., bereavement, family violence, move away from a support system) that may have made the pregnancy higher risk or required her to take medication. Was this a planned pregnancy? If not how did the parents respond to the pregnancy? Elicit a history of any previous infertility, numbers of previous pregnancies and outcomes. How soon was prenatal care initiated? Explore any concerns that arose early in the pregnancy in the mother or which were suspected/detected in the fetus; exposure to potential toxins during pregnancy, such as alcohol, prescribed, over-the-counter or recreational drugs; the development of problems related to the pregnancy both physical and psychological including screening results and any diagnostic investigations.

Labour and Delivery Ask about gestational age, spontaneous or induced, length and course of labour; evidence of any fetal distress, interventions (C section, instrumentation); condition of the child at delivery and during the neonatal period (resuscitation, blood sugar levels, infections, jaundice, time spent in the neonatal care unit); age of infant when discharged.

Predictive value of the Apgar Score The original paper published in 1953 by Dr Virginia Apgar (Apgar, 1953) was of a scoring system to assess mortality risks in term neonates. She concluded that mature neonates receiving a score of 0-2 at 1 minute had a poor prognosis and those with scores of 8-10 had an excellent prognosis. Subsequent studies have confirmed these observations (Casey et al, 2001). The Apgar score does not accurately identify perinatal asphyxia (Mercuri et al, 2002), which is not surprising given the fact that the scoring system was developed to determine the effects of foetal presentation, mode of delivery and type of anaesthesia used in estimating the chances of neonatal survival. Thus most children with neurodevelopmental disabilities, including cerebral palsy, do not have low Apgar scores.

Infancy You want to determine how readily the child settled into patterns of eating, sleeping and eliminating both in terms of its impact on the child’s physical development and the relationship with the caregiver. Difficulties in establishing these basic functions in early life may signal problems with self-regulation later. The caregiver’s disposition/health at this time is important in providing information about the emotional environment for the

113 young child. It is important to explore the possibility of postpartum depression and other stresses experienced by the family.

Past Medical History Establish whether the child has a chronic medical condition; or experienced any episode that might have directly impacted on brain development such as previous encephalitis or head injuries. Ask whether there have been frequent visits to emergency with injuries or other problems. The impact of neglect on a child’s development may be significant, particularly in the areas of language and social development. Recurrent ear infections may have resulted in a conductive hearing loss; concerns about the child’s hearing or vision should be elicited and the results of any tests noted. Is the child taking any regular medications; how effective are they; are alternative treatments (e.g., homeopathic medications) being used? You should undertake a systematic enquiry particularly eliciting symptoms that may be significantly associated with developmental conditions (e.g. seizures, tics). It is particularly important to ask about feeding and growth issues, as these are a common problem in children with developmental delays and a frequent source of concern to parents/caregivers. Some genetic causes of developmental delay will be associated with particular growth patterns.

Developmental History and Current Functioning The accurate recollection of the acquisition of developmental milestones may be a challenge for many parents. Having parents complete a form before the assessment may help, as they will be able to use baby records to provide the information. In many cases it is more helpful to ask the parents when was the first time anyone expressed any concern about the child’s development.

It is important to elicit information about all aspects of current developmental functioning, to establish the degree of any delays as well as identifying deviations from normal.

Gross Motor: the progression of the early milestones should be established where possible, including rolling, sitting, crawling or other means of mobilising before the onset of walking (rolling, bottom-shuffling), pulling to stand, standing, walking, running, jumping, negotiating stairs and riding a tricycle. Information about the child’s gait and a history of frequent falls should be obtained. Deviations from normal developmental patterns may be indicated by a very early preference for one side of the body or a tendency to pull up onto the toes from supine before being able to sit.

Mark’s Case

Mark is aged 2 years and he is brought to your office by his mother because he is toe walking. This started a few months ago. On review of his history the pregnancy was normal and he was born at 34 weeks gestation but had an uneventful neonatal period. His developmental milestones were achieved within normal limits although he walked later than his brother at 17 months.

Questions to ponder: What are the possible causes of tip toe walking in a two year old boy? What would be the commonest pathological cause of tip toe walking? What are the important points to elicit from the history? What do I need to look for in my examination of the child? If the findings are completely normal what would I advise?

Discussion: Mark’s developmental milestones are reported as being within normal limits

114 and whilst walking at 17 months is later than average it is not outside of the normal range. Mark might be showing a transient developmental phase seen in normally developing toddlers. This phase does not normally last beyond the age of 3 years. A child with completely normal development and a normal physical examination should be regularly monitored to ensure spontaneous resolution of the toe walking.

Persistence of toe walking beyond the age of 3 years in a child with a normal physical examination would indicate the development of habitual or idiopathic toe walking which will result in shortening of the Achilles Tendons and intervention such as physiotherapy should be arranged.

There are several different pathological processes that might account for Mark’s presentation. The commonest pathological cause of toe walking is cerebral palsy (a persistent but not necessarily unchanging disorder of posture and/or movement, due to a non progressive lesion of the brain, acquired during the stage of rapid brain development). Prematurity is a risk factor for the development of cerebral palsy and further exploration of the prenatal, perinatal and postnatal history might other risk factors such as prenatal infection. In a child with a spastic diplegia one would expect to find increased tone and deep tendon reflexes, particularly affecting the legs. Spasticity may also arise from lesions affecting the motor fibres of the spinal cord (congenital, traumatic, tumour, diastematomyelia); again the physical examination will reveal significant findings. Tip toe walking is seen often in children presenting with autism spectrum disorder, it would be important to explore the areas of speech and language development, social interaction and communication and behaviours at the core of this diagnosis.

In an older child the possibility of a muscular condition should be considered; the classic example being Duchenne Muscular Dystrophy.

Fine motor: hand function should be assessed by asking about grasp development, bilateral hand use, the development of laterality, drawing and manipulation skills.

Receptive Language: the level of verbal comprehension should be assessed by asking about response or orientation to sound, response to own name, following commands of increasing complexity e.g., one, two, three part commands, understanding of complex questions.

Expressive Language: the level of language expression will be indicated by the use of cooing, babbling, numbers of single words, word combinations, sentence use, asking ‘w’ questions.

Non verbal communication: the level of language expression will be indicated by the use of cooing, babbling, numbers of single words, word combinations, sentence use, asking ‘w’ questions.

Speech: typically parents are able to understand more of their child’s utterances than are strangers. Many children show typical sound substitutions as their speech develops but they become clearer with time.

115 Pragmatics: the social use of language may be seen very early on with the development of turn-taking, children typically use language in a variety of ways (e.g., to greet, request, show, engage others). As children get older they are able to demonstrate an understanding of appropriate use of language in different social settings.

Cognition: non verbal problem solving skills can be evaluated by asking whether the child can find hidden objects, open screw toys, recognise shapes, colours and complete puzzles.

Adaptive/self-help: these should be assessed by asking about undressing and dressing skills. The child first helps and gradually develops more independence. Finger-feeding progresses through using a spoon, to using two utensils together; independent bottle feeding progresses to use of a sipper cup then an open cup. Toilet training is often a source of concern for parents and is often delayed in children with developmental problems. Parents should be reassured that training may be delayed until the child is indicating discomfort.

Social relationships: need to be assessed with respect to the child’s parents, siblings, extended family and peers. When assessing younger children are they aware of others and respond to the overtures of caregivers/familiar others, participate in routines such as peek-a-boo, show a special preference for their primary caregiver and show separation anxiety. Later there is an increasing focus on peer relationships but it is important to establish how much exposure the child has had to children their own age in formal and informal settings.

Play preferences/skills: dominant or preferred play pattern (solitary, parallel, cooperative); sharing and turn taking; child’s role with others (observer, follower, leader); use of toys (functional, pretend imaginative).

Self regulation/temperament/behaviours: in younger children alertness, passivity/activity, irritability, sociability/responsiveness, curiosity and how easy the child is to sooth. In older children their approach to/avoidance of activities, level of engagement in learning, dependence, attention span, impulsivity, activity levels, frustration threshold, persistence, response to failure/success. Explore any unusual behaviours such as self stimulation, repetitive motor mannerisms (hand flapping, head banging, rocking), sensory sensitivities (hyperacusis, tactile defensiveness), intense interests, obsessions and rituals. Specific questions should be asked about eating and sleep behaviours, difficulties in these areas can be particularly stressful for parents.

Andrew’s Case

Andrew is a 2 year old boy who is brought to see you because his mother is concerned that he is not talking. He is the only child of a single parent. His mother failed to bring Andrew for his 18 month check but is now worried because Andrew has only 5 recognisable words. Andrew’s mother tells you she is 6 weeks pregnant. You review Andrew’s early history; the pregnancy and birth history are completely normal. Andrew was born at term and apart from his speech and language development his milestones were all within normal limits. However, his mother mentions that although Andrew has been walking since the age of 16 months he always crawls over to furniture to get himself up from the floor.

116 Questions to ponder: What are the common possible causes for Andrew’s lack of language? What aspects of the history will help to differentiate between the causes? What does the motor difficulty described mean? Are the two connected? What tests need to be undertaken?

Discussion: A child of 2 years would be expected to have approximately 200 words and should be putting two words together to make novel utterances. He should be able to follow a 1 step command without visual cues and to point to named pictures. At least 65% of his speech should be intelligible.

The main differential diagnoses are an isolated speech and language delay (including secondary to a hearing loss or neglect), a global developmental delay (which may have a genetic cause) and autism spectrum disorder.

It is important to determine whether Andrew is trying to communicate verbally but his words cannot be understood, which would indicate primarily a speech difficulty and to determine his understanding of language, for example whether he is able to follow a one step command without visual cues. It is important to establish that Andrew is trying to compensate for his lack of expressive language by non verbal means such as pointing, gesturing and bringing objects to show. A lack of compensation would be a red flag for autism spectrum disorder (ASD). Enquiring about play skills will also help to differentiate between ASD and other delays. Children with ASD will show a preference for solitary play, resisting interactions with others, a lack of imitation and pretend play. They may also show some unusual behaviours such as resistance to change, intense sensory interests and motor mannerisms such as hand flapping.

Information about other aspects of current developmental functioning will help to determine whether there are significant delays in other areas of development in which case there may be an element of global delay.

The description of Andrew’s difficulty in getting up from the floor would indicate a proximal muscle weakness. The most likely cause is Duchenne muscular dystrophy (DMD), an X – linked condition, which affects 1 in 3500 boys, and would link the speech delay with the muscle weakness described. Other neuromuscular conditions would have to be considered, as would a possible endocrine cause such as hypothyroidism. However, the physical examination finding of pseudohypertrophy of the calf muscles is the typical finding in DMD. Creatine kinase blood testing will give levels 10 times or more above normal. Such a finding in this case would necessitate urgent genetic consultation to test for a possible gene deletion/duplication or point mutation and in some cases there will be a need for a muscle biopsy.

Early diagnosis is important to ensure the child is linked to specialised services and to provide genetic counselling to the family.

Family History: it is necessary to take a full 3 generation family history to explore possible genetic causes or influences on the child’s development. Factors which may be contributory include ethnic background, consanguinity, recurrent miscarriages and other children born with birth defects; a history of deafness, blindness, language delay, mental retardation, motor problems, learning difficulties/school problems, psychiatric disease, behavioural problems and seizures should be sought.

117 Social History: should include information about attendance at daycare or other alternative care arrangements in the past and currently, you are looking for information pertaining to the stability and quality of care as well as the child’s ability to adapt to different environments. A note of all support services accessed in the past and presently should be provided together with personal support systems. The parents work responsibilities, time pressures and financial concerns should be explored.

After having gathering considerable information that may be perceived as negative it is important to end on a positive note, by asking about the child’s strengths and positive qualities and also what the parent most enjoys about their child.

Although time constraints may impact on the amount of information that can be gathered in any one primary care consultation, much of the background information may be known to you and additional information can be gathered with caregiver questionnaires.

Observation: How does child interact with her caregiver and with you? Does the child initiate interaction? Does she stay close to her mother and not explore the toys? If she plays with the toys, is the play age appropriate? You should note any language heard and the child’s response to instructions. You may wish to encourage the child to undertake some fine motor tasks with small toys or drawing activities. Gross motor skills should be noted as the child moves around the room.

Physical Examination: This should include:

General: Mood, alertness, language skills, visual and auditory behaviours.

Growth parameters: plotting height/length, weight, head circumference, looking for evidence of overgrowth, failure to thrive, short stature, obesity, macrocephaly, microcephaly.

Examination of the skin for neurocutaneous lesions: café au lait patches, ash leaf macules, adenoma sebaceum, axillary or inguinal freckling, bruises and scars, sacral dimple or midline hair tuft.

Observation for dysmorphic features: which may indicate a specific genetic condition:  Eyes – Epicanthic folds, hypertelorism, hypotelorism, cataracts  Ears – preauricular pits or tags, low set, abnormally placed or posteriorly rotated  Mouth – high arched palate, cleft lip, cleft palate, bifid uvula (sub mucosal soft palate)  Hair – placement, number of hair whorls (underlying CNS abnormality), abnormal eyebrow formation, hirsutism.  Hands – clinodactyly, single palmar crease  Feet – syndactyly, wide gap between 1st and 2nd toes, hypoplastic nails

Cardiovascular examination: to identify possible congenital conditions

118 Abdominal and genitalia examination: for hepatosplenomegaly and for possible congenital anomalies, evidence of delayed or advanced sexual maturation.

Neurological examination: abnormalities of muscle bulk, tone, strength, deep tendon reflexes, gait, co-ordination, abnormal movements or tics, persistence of primitive reflexes, cranial nerves abnormalities.

Musculo skeletal examination: range of motion at all joints.

In a developmental assessment the physical examination is less likely to yield significant findings than the medical and developmental history. However, it is essential to cultivate the habit of careful observation for minor anomalies. The fact that an anomaly is trivial in appearance does not always imply that its significance is also trivial; for example, ear pits may be a genetic marker of severe deafness. Some defects can occur either as isolated anomalies or as part of a more serious disorder, for example pes cavus may be the first sign of Friedreich’s ataxia. Single minor anomalies occur commonly in infants (14%) and frequently running in families. However, only 0.5% of babies have three or more minor defects and 90% of these will have a major defect as well. Thus, minor dysmorphic features are a useful pointer to the prenatal origin of a child’s problems.

Plagiocephaly A dramatic increase in deformational plagiocephaly has been seen over the last decade since the "Back to Sleep" campaign was introduced, to decrease the incidence of sudden infant death syndrome (Littlefield et al, 2004). The need to involve primary care providers in parental education cannot be overemphasised in order that the development of plagiocephaly is prevented thereby avoiding the development of persistent sleep patterns which can result in craniofacial deformities. Should preventative measures fail, deformational plagiocephaly can be treated successfully with behaviour modification or cranial moulding-helmet therapy. The natural history of deformational plagiocephaly is age dependent with maximal rates of almost 20% at 4 months, decreasing to less than 10% by 8 months. Approximately 75% of cases will resolve by 2 years. One recent study from Auckland, New Zealand showed a point prevalence for the first year of life of 30% although it is rare for new cases to appear after 8 months of age (Hutchison et al, 2004).

Deformational plagiocephaly is a common and somewhat benign cause of skull deformity which is not associated with developmental delay although children with low muscle tone may be at increased risk of developing plagiocephaly as a secondary phenomenon. It must be distinguished from the more serious craniosynostosis, which occurs alone or as a syndrome. It is important that primary care providers feel comfortable in clinically distinguishing deformational plagiocephaly from craniosynostosis thereby preventing unnecessary investigation and referrals. In craniosynostosis, one or more of the sutures are inactive, the normal interdigitations are reduced, the suture line becomes obliterated, with bony thickening and the bones fuse prematurely. The brain is unable to expand in the plane of the fused sutures and the head develops an abnormal shape.

Examining an infant's head from above can help to differentiate true lambdoid synostosis from deformational plagiocephaly. In infants with lambdoid synostosis, the posterior bossing is in the parietal area contralateral to the flat part of the head. Deformational plagiocephaly causes frontal bossing ipsilateral to the flat part of the head. In infants with lambdoid synostosis, the ear is displaced posteriorly toward the fused suture. In infants

119 with deformational plagiocephaly, the ear is displaced anteriorly. Isolated sagittal synostosis is the most common type of craniosynostosis. Of the more than 150 craniosynostosis syndromes, Crouzon's disease and Apert's syndrome account for the majority of cases. The diagnosis of craniosynostosis relies on physical examination, plain radiography, and computed tomography. Untreated progressive craniosynostosis leads to inhibition of brain growth, and an increase in intracranial and intraorbital pressure. Infants should be evaluated as soon as they are diagnosed.

Diagnostic Testing Hearing and vision testing should be obtained for all children suspected of having significant developmental problems. Decisions about other tests are dependant on findings from the assessment. Children with a global developmental delay should have chromosome analysis and Fragile X testing as a minimum. Other tests may include CT scan, MRI, other genetic tests for specific syndromes and electrophysiological testing (Shevell et al, 2001a). All children on the autistic spectrum would merit chromosome analysis testing but further testing would be determined by the presence of an associated developmental delay or indications of a possible metabolic condition (Shevell et al, 2001b). Testing of children with isolated speech and language delays is not warranted given the very low yield (Shevell et al, 2000).

Interventions Children with speech and language delays should be supported in community based programs. Randomised controlled trials and quasi experimental study designs indicate positive and statistically significant effects when intervention groups are compared to control groups. In children with expressive language delays the results are comparable for direct (therapist administered) and indirect intervention (via groups or daycare). In contrast, direct intervention was more effective in cases with speech difficulties, whereas indirect intervention was more effective in cases of receptive language delay (Law et al, 2004). Parents often feel that the lack of direct intervention is detrimental to their child’s development and need to be reassured that group or daycare based therapy has been shown to be effective.

There is a strong correlation between a child’s preschool language development and literacy readiness on entry to school.] Therefore it is important to ensure the promotion of language skills and literacy interactions by providing parents with information about developmentally appropriate interactions to optimise development in these areas. In addition families should be linked to local resources as early as possible.

Children presenting with global developmental delays, autism spectrum disorders, cerebral palsy and other neuromuscular disorders will require support from a multidisciplinary team based at Children’s Treatment Centres to ensure that the child’s full strengths and weaknesses are identified and appropriate programs put in place. The time of diagnosis is likely to be very difficult for families and the central role of the family physician cannot be overemphasised, given their pivotal role in providing ongoing emotional support to the child’s parents in helping them through their journey of acceptance of their child’s disability. Part of this support should include working with the parents to ensure that their child continues to have opportunities to ‘play and learn’ in the same way as their peers. Within the wider context of the family, the effect of a disability diagnosis on the child’s siblings should not be overlooked – they continue to have their own developmental and emotional needs which in some cases may be neglected.

120 Family physicians are uniquely placed to provide direct support, as well as helping families to access support groups, appropriate daycare placements, ministry funded community global support services and services specific to the child’s condition.

The family physician should be the main provider in terms of continuity of care and this central role should complement the ‘family centred’ approach taken by other care providers. The family physician often has a relationship with all family members. Therefore the family doctor has a unique perspective of all the influences affecting the child’s development, including physical and mental health challenges, family coping mechanisms, interpersonal relationships, economic issues and cultural influences on day to day living. In particular the child and family have to negotiate many transitions through childhood, including the difficult the transition to adult care. The support and understanding of the family physician is paramount at all of these difficult times.

Neurodevelopmental outcomes in premature infants Over the past 30 years improved perinatal care has considerably increased survival rates and neurodevelopmental outcomes such that for most preterm infants of > 32 weeks' gestation, survival and long term neurodevelopment are similar to those of infants born at term. Overall, outcomes are also good for infants born after shorter gestations. Most infants survive without substantial neurodevelopmental problems, attend regular schools and ultimately live independent lives.

A few preterm babies, however, do develop important and lasting neurodevelopmental problems. The period between 20 and 32 weeks after conception is one of rapid brain growth and development. Illness, undernutrition, and infection during this time may compromise neurodevelopment. The clinical consequences can include serious neuromotor problems (principally cerebral palsy), visual and hearing impairments, mental retardation, psychological, behavioural, and social problems.

Most substantial impairment occurs in the 0.2% of infants born before 28 weeks' gestation, or with birth weights of < 1000 g (extremely low birth weight). The survival rate for extremely preterm infants has improved over the past decade, but the overall prevalence of neurodisability after preterm birth has not fallen. A recently reported North American multicenter, retrospective, comparative analysis of infants of <25 weeks' EGA with birth weights of 501 to 1000 g, compared children born between January 1993 and June 1996 and between July 1996 and December 1999. When examined at 18 to 22 months post term the rates of cerebral palsy remained stable in the two cohorts, 23 to 21%. The numbers of children who were blind (2.3 to 1.1%) or deaf (4.3 to 2.6 %) did not change significantly. There was a significant rise in the number of children with cognitive impairment (Mental Development Index <70) from 40 to 47% (Hintz et al, 2005).

In the United Kingdom, the EPICure Study Group, has evaluated outcomes for surviving infants born before 26 weeks' gestation. At a median age of 30 months (corrected for gestational age), about half the children had disability and about half of these children had severe disability. Severe disability is defined as impairments that will probably put the child in need of assistance to perform activities of daily living (Wood et al, 2000). The prevalence of disability remained high when the children were reassessed at 6 years, with less than half of them having no evidence of impairment (Marlow et al, 2005).

Most children with cerebral palsy are not born prematurely. However, preterm infants, particularly those born after very short gestations, are at increased risk of cerebral palsy.

121 Additional specific perinatal risk factors for cerebral palsy in preterm infants include feto- maternal infection, neonatal sepsis, and other severe illness in the newborn period. Brain damage related to periventricular haemorrhage, particularly periventricular cystic leucomalacia and posthaemorrhagic hydrocephalus are strong predictors of future neurodevelopmental problems, especially cerebral palsy.

The EPICure study group found that abnormal pre discharge ultrasound scans of the head were highly predictive of cerebral palsy, however <50% of subsequent cases of cerebral palsy were reported to have white matter changes.

Most visual impairment in very preterm infants is secondary to retinopathy of prematurity, although some cases are caused by cortical damage. Retinopathy of prematurity affects infants born at < 32 weeks' gestation. The incidence and severity is inversely related to gestational age. The risk seems to be directly related to the concentration and the duration of oxygen treatment to which the very preterm infant is exposed.

Although the incidence and severity of retinopathy of prematurity has fallen in developed countries over the past 20 years, it remains one of the commonest causes of childhood blindness, visual field defects, and refractive errors. Despite screening and treatment, about 2% of extremely low birthweight infants are blind as a result of retinopathy of prematurity.

About 3% of infants born at < 28 weeks' gestation require hearing aids, though more infants have milder hearing impairment or high-frequency hearing loss. The aetiology of sensorineural hearing loss is probably multifactorial, with a variety of interacting factors that are related to illness severity contributing. Hearing impairment is associated with delayed language development, although very preterm infants with normal hearing may also develop speech and language problems. Early use of hearing aids plus support from audiology services can improve language development in infants with sensorineural hearing loss.

At school age, up to 50% of infants born before 28 weeks' gestation need some form of additional educational support. One systematic review found that the IQ of extremely low birthweight children is on average 10 points lower than in children who were born at term (Bhutta et al, 2002). Very preterm children of normal intelligence may have specific learning difficulties, commonly with mathematics or reading. Confounding social factors (for example, mother's educational status) may have a greater influence on educational outcome than extremely preterm birth.

Early social development, for example, responsive smiling and recognising family members, may be delayed in preterm infants. Interactive and imaginative play may also be delayed. Investigators from several countries have noted a higher incidence of behavioural problems in extremely low birthweight children of school age, with attention, social, and thought processing problems the most commonly detected. As behavioural problems can adversely affect school performance and development of social relations, these are important long term effects of preterm birth (Hille et al, 2001).

Regular follow up assessments of children at risk of neurodevelopmental impairment may allow the early detection of problems and the provision of medical, social, and educational support if required. Many signs of neurodevelopmental impairment are

122 evident only after infancy, and follow up should continue until the child is at least 18-24 months old, corrected for gestation.

References Apgar V (1953). A proposal for a new method of evaluation of the newborn infant. Anesth Analg, 32:260–7.

Bhutta AT, Cleves MA, Casey PH, Cradock MM, Anand KJ (2002). Cognitive and behavioral outcomes of school-aged children who were born preterm: a meta-analysis. JAMA.14;288(6):728-37.

Casey BM, McIntire DD, Leveno KJ (2001). The continuing value of the Apgar score for the assessment of newborn infants. N Engl J Med. 15;344(7):467-71.

Chakrabarti S, Fombonne E (2005). Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence. Am J Psychiatry. 162(6):1133-1141.

Hille ET, den Ouden AL, Saigal S, Wolke D, Lambert M, Whitaker A, Pinto-Martin JA, Hoult L, Meyer R, Feldman JF, Verloove-Vanhorick SP, Paneth N (2001). Behavioural problems in children who weigh 1000 g or less at birth in four countries. Lancet. 357(9269):1641-3.

Hintz SR, Kendrick DE, Vohr BR, Poole WK, Higgins RD (2005). National Institute of Child Health and Human Development Neonatal Research Network. Changes in neurodevelopmental outcomes at 18 to 22 months' corrected age among infants of less than 25 weeks' gestational age born in 1993-1999. Pediatrics. 115(6):1645-51.

Hutchison BL, Hutchison LA, Thompson JM, Mitchell EA (2004). Plagiocephaly and brachycephaly in the first two years of life: a prospective cohort study. Pediatrics. 114(4):970-80.

Law J, Boyle J, Harris F, Harkness A, & Nye C (1998). Screening for speech and language delay: a systematic review of the literature. Health Technology Assessment 2: No. 9.

Law J, Garrett Z, Nye C (2004). The efficacy of treatment for children with developmental speech and language delay/disorder: a meta-analysis. Speech Lang Hear Res. 47(4):924-43.

Littlefield TR, Saba NM, Kelly KM (2004). On the current incidence of deformational plagiocephaly: an estimation based on prospective registration at a single center. Semin Pediatr Neurol. 11(4):301-4.

Marlow N, Wolke D, Bracewell MA, Samara M (2005). EPICure Study Group. Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med. 352(1):9-19.

123 Mercuri E, Rutherford M, Barnett A, Foglia C, Haataja L, Counsell S, Cowan F, Dubowitz L (2002). MRI lesions and infants with neonatal encephalopathy. Is the Apgar score predictive? Neuropediatrics. 33(3):150-6.

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Shevell MI, Majnemer A, Rosenbaum P, Abrahamowicz M (2001b). Etiologic yield of autistic spectrum disorders: a prospective study. J Child Neurol. 16(7):509-12.

Shevell MI, Majnemer A, Rosenbaum P, Abrahamowicz M (2000). Etiologic yield of single domain developmental delay: a prospective study. Pediatr. 137(5):633-7.

Wood NS, Marlow N, Costeloe K, Gibson AT, Wilkinson AR (2000). Neurologic and developmental disability after extremely preterm birth. EPICure Study Group. N Engl J Med. 10;343(6):378-84.

Zwaigenbaum, L (2001). Autistic spectrum disorders in preschool children. Canadian Family Physician, 47:2037-2041.

124 Behavioural Manifestations of Autism in the First Year of Life

If we have permission, this article will be included.

Authors: Lonnie Zwaigenbaum, Susan Bryson, Tracey Rogers, Wendy Roberts, Jessica Brian and Peter Szatmari

Source: International Journal of Developmental Neuroscience Volume: 23, Issue: 2-3, April - May, 2005, pp. 143-152

Abstract In the interest of more systematically documenting the early signs of autism, and of testing specific hypotheses regarding their underlying neurodevelopmental substrates, we have initiated a longitudinal study of high-risk infants, all of whom have an older sibling diagnosed with an autistic spectrum disorder. Our sample currently includes 150 infant siblings, including 65 who have been followed to age 24 months, who are the focus of this paper. We have also followed a comparison group of low-risk infants. Our measures include a novel observational scale (the first, to our knowledge, that is designed to assess autism-specific behavior in infants), a computerized visual orienting task, and standardized measures of temperament, cognitive and language development. Our preliminary results indicate that by 12 months of age, siblings who are later diagnosed with autism may be distinguished from other siblings and low-risk controls on the basis of: (1) several specific behavioral markers, including atypicalities in eye contact, visual tracking, disengagement of visual attention, orienting to name, imitation, social smiling, reactivity, social interest and affect, and sensory-oriented behaviors; (2) prolonged latency to disengage visual attention; (3) a characteristic pattern of early temperament, with marked passivity and decreased activity level at 6 months, followed by extreme distress reactions, a tendency to fixate on particular objects in the environment, and decreased expression of positive affect by 12 months; and (4) delayed expressive and receptive language. We discuss these findings in the context of various neural networks thought to underlie neurodevelopmental abnormalities in autism, including poor visual orienting. Over time, as we are able to prospectively study larger numbers and to examine interrelationships among both early-developing behaviors and biological indices of interest, we hope this work will advance current understanding of the neurodevelopmental origins of autism.

Introduction Autism is the prototypical form of a spectrum of related, complex neurodevelopmental disorders referred to as the autistic spectrum disorders (ASDs; also known as the pervasive developmental disorders; PDDs). The ASDs include autism, Asperger syndrome and atypical autism (or PDD Not Otherwise Specified) (American Psychiatric Association, 1994) and affect over 1 in 250 pre-school children (Bryson and Smith, 1998, Bertrand et al., 2001, Chakrabarti and Fombonne, 2001). There is strong evidence from neuropathological studies that autism/ASD (hereafter, autism) has its origins in abnormal brain development early in prenatal life (Bauman and Kemper, 2003; Rodier, 2002). Atypical neurodevelopment continues postnatally, with a unique pattern of acceleration in brain growth as measured by head circumference (Courchesne et al., 2003, Lainhart et al., 1997), which correlates with enlarged grey matter volumes observed in MRI

125 studies by 23 years of age (Courchesne et al., 2001, Courchesne et al., 2003). Although autism is typically not diagnosed until late in the preschool years (Howlin and Moore, 1997), there are marked neurodevelopmental abnormalities (outlined in detail in several papers in this special issue) that are present at birth and continue to evolve from the earliest months of life.

In this context, it is not surprising that parent’s recollections of their children’s behavior prior to diagnosis, and analyses of home videos, indicate that abnormalities in early development are often present in the first year. When asked about their initial concerns regarding their child with autism, at least 3050% of parents recall abnormalities dating back to the first year, including extremes of temperament and behavior ranging from alarming passivity to marked irritability (Gillberg et al., 1990, Hoshino et al., 1987), poor eye contact (Gillberg et al., 1990, Hoshino et al., 1987, Rogers and DiLalla, 1990, Volkmar et al., 1985), and lack of response to the parents voices or attempts to play and interact (De Giacomo and Fombonne, 1998, Gillberg et al., 1990, Hoshino et al., 1987, Ohta et al., 1987, Rogers and DiLalla, 1990, Volkmar et al., 1985). Core symptoms such as speech delay and stereotyped behavior are often evident in the second year, but these clearly are not the initial manifestations of autism (Short and Schopler, 1988, Stone et al., 1994, Sullivan et al., 1990). Similarly, several studies of early home videos have revealed behaviors indicative of autism in children later diagnosed with ASD compared to those of typically developing children (Adrien et al., 1991, Adrien et al., 1992, Baranek, 1999, Bernabei et al., 1998, Maestro et al., 1999, Mars et al., 1998, Massie, 1978, Osterling and Dawson, 1994, Rosenthal et al., 1980, Werner et al., 2000, Zakian et al., 2000). During the first year of life, children with autism are distinguished by reduced social interaction (Adrien et al., 1992), absence of social smiling (Adrien et al., 1992), lack of facial expression (Adrien et al., 1992), failure to orient to name (Bernabei et al., 1998, Osterling and Dawson, 1994, Maestro et al., 1999, Mars et al., 1998, Zakian et al., 2000), lack of pointing/showing (Osterling and Dawson, 1994, Mars et al., 1998), decreased orienting to faces (Bernabei et al., 1998, Osterling and Dawson, 1994, Maestro et al., 1999, Mars et al., 1998, Zakian et al., 2000), lack of spontaneous imitation (Mars et al., 1998) and abnormal muscle tone, posture and movement patterns (e.g., inactive or disorganized) (Adrien et al., 1992, Teitelbaum et al., 1998).

Data from these retrospective sources have yielded important insights into what constitute initial behavioral signs of autism. Indeed, these data have guided current practice guidelines in early identification (Filipek et al., 2000), forming the basis of many of the currently available autism screening tools (Robins et al., 2001, Stone et al., 2000). However, it is not clear that we have a full and accurate picture of the behavioral manifestations of autism in the first year of life. Retrospective reports are subject to recall biases and likely include significant inaccuracies with respect to the description and perceived timing of early behavioral signs. These reports also generally lack appropriate controls; that is, parents of non-autistic children (particularly those with other developmental disorders) have not been asked about similar developmental concerns. Moreover, observations from home videos vary considerably between children and depend on the particular contexts selected for taping. We also emphasize that the focus of these studies has been mainly on identifying behavioral markers to help with early identification, with minimal attention paid to their developmental sequence or their relation to underlying neurodevelopmental mechanisms. For example, early risk markers (such as extreme reactivity or reduced propensity to orient to faces) may not be simple analogues of later signs of autism, but rather behaviors that reduce the childs

126 opportunities to learn from social experiences, thus initiating an atypical pattern of development that eventually leads to further manifestations of autism. Abnormalities may also exist in functions mediated by early developing neural systems (e.g., visual orienting), not readily recognized by parents as being directly linked to later manifestations of autism, that may in fact be fundamental to later social and communicative impairment. Such hypotheses cannot be tested based on the retrospective, largely cross-sectional data currently available.

In the interest of more systematically documenting the early signs of autism, and of testing specific hypotheses regarding their underlying neurodevelopmental substrates, we have initiated a longitudinal study of high-risk infants, all of whom have an older sibling diagnosed with an ASD (hereafter, `infant siblings). A detailed prospective study is only feasible in children at high risk of ASD, to allow enough cases to be identified from an attainable sample. Recurrence risk in autism is around 9% (Szatmari et al., 1998), making siblings an ideal group to follow. The prospective design offers numerous advantages. First, assessment of infants can be initiated very early, allowing an examination of the integrity of early neurodevelopmental systems such as visual attention. Retrospective reports may be limited to behaviors that parents directly link to the autistic phenotype, and tend to focus on later infancy. Second, behaviors can be studied longitudinally, which can help address questions regarding their developmental sequence and the relationship between impairments in early neurodevelopmental systems and later behavioral manifestations. Third, behavioral and neuropsychological findings can be correlated with neurobiological phenomena such as accelerated head and brain growth measured concurrently. Fourth, early behavioral signs of autism can be elicited and measured under standardized conditions, allowing greater comparability both within and between individuals over time. Although this longitudinal study is still in its early stages, the prospective design is allowing us to systematically examine a broad range of early behavioral markers, and to begin to understand the relationship between early developing neurodevelopmental systems and later impairments characteristic of autism.

Methods

Participants Our sample currently includes 150 infant siblings of children with a formal diagnosis of ASD, including 65 siblings who have been followed to age 24 months, who are the focus of this paper. Participants have been identified through families receiving clinical services at three of the largest autism diagnostic and treatment programs in Canada: the McMaster Childrens Hospital in Hamilton and The Hospital for Sick Children in Toronto, which receive referrals from across Southern Ontario, and the IWK Health Centre in Halifax, which provides services to children with autism across Atlantic Canada. Diagnosis of ASD in the older sibling is confirmed by a clinical interview using DSM-IV criteria, and by administration of the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000). Infants are mainly recruited at 6 months of age or younger, to allow a focus on the earliest stages of development, and to ensure that the sample is ascertained simply on the basis of sibling status, rather than due to specific parental concerns.

Recognizing that patterns of early development of non-autistic siblings of children with autism may not parallel those characteristic of typical development (e.g., language delays and other mild developmental impairments may be more prevalent), we have also

127 recruited and followed a comparison group of 75 low-risk infants, of whom 23 have been followed to age 2 years. Inclusion criteria for the low-risk infants are no 1st or 2nd degree relatives with ASD, term gestation and birth weight greater than 2500 g. Control infants are recruited from nurseries across the three regions, and are roughly gender-, birth-order and age-matched to high-risk infants (Szatmari et al., 2004).

We have attempted to see participants as close as possible to 6 and 12 months of age, but have allowed for these visits to occur at 67 months and 1214 months, respectively. Hence, the mean age of siblings and controls for whom 6-month data are reported is 6.44 (S.D. = 0.50) months and 6.15 (S.D. = 0.43) months, respectively. The mean age of siblings and controls for whom 12-month data are reported is 12.50 (S.D. = 0.75) months and 12.81 (S.D. = 0.77) months, respectively (see - Table: [ 1]). Neither of these differences is statistically different.

Table: Sample description: participants followed to 24 months Siblings Controls N* Mean age SD n Mean age SD (months) (months) (months) (months) 6-month 44 6.44 0.50 15 6.15 0.43 assessment

12-month 65 12.50 0.75 23 12.81 0.77 assessment * The smaller number of participants at 6 months is due to the fact that some infants began the study at 12 months of age.

Study measures

Early behavioral indicators of autism: One of the unique strengths of a prospective study of infants at high risk for autism is the opportunity to directly observe early behavioral manifestations of the disorder. However, at the outset of the study, there was no standardized instrument specifically designed to measure autism-related behaviors in young infants. Observational measures exist to screen for early signs of autism in 18-month-olds (the Checklist for Autism in Toddlers; CHAT; Baron-Cohen et al., 1996) and 24-month olds (the Modified CHAT; M-CHAT; Robins et al., 2001 and the Screening Tool for Autism in Two-year olds; STAT; Stone et al., 2000), but not for infants younger than 18 months. Moreover, the CHAT and other screening measures do not cover the breadth of developmental domains implicated in autism. Therefore, to aid systematic data collection on early signs of autism, we developed the Autism Observation Scale for Infants (AOSI; Bryson et al., 2004b). We have operationalized 18 specific risk markers for autism hypothesized from retrospective studies, videotape analyses, case reports and our collective clinical experience, and have developed a standardized procedure for detecting each of these markers within a brief observational assessment. Infants are engaged in semi-structured play, and systematic presses are designed to assess various target behaviors, including visual tracking and attentional disengagement, coordination of eye gaze and action, imitation, affective responses, early social-communicative behaviors, behavioral reactivity, and sensory-motor development. These behaviors are rated on a scale from 0 to 3, where 0 implies normal function, and higher values represent increasing deviation. Over a period of more than two years, the scale has been revised and refined through piloting various methods of eliciting and coding the behaviors in a range of low- and high-risk infants.

128 Reliability analyses indicate that absolute agreement between trained raters is >90% on each item, and that inter-rater agreement on the total score is excellent: intra-class correlations (ICC) at 6, 12, and 18 months are 0.71, 0.90 and 0.92, respectively, each on a sample of 2634 infants. Test-retest reliability (at 12 months) is also good (ICC = 0.63) (Bryson et al., 2004b).

Visual orienting task: Our previous work has identified abnormalities in an early-developing component of visual attention that appears to be specific to autism, and is detectable using a simple visual orienting task (Bryson et al., 2004a, Landry and Bryson, in press). Briefly, children are seated in a darkened room in front of a screen, on which colorful dynamic stimuli are presented side-by-side. Once the child is engaged on a central fixation stimulus, a second (comparable) stimulus is presented on either the left or right side, and latency to begin an eye movement to the peripheral stimulus is measured. The critical manipulation is whether the central stimulus remains `on or is turned `off during presentation of the peripheral stimulus. This provides independent measures of the disengage (central `on) and shift (central `off) operations of visual attention. The key finding is that, relative to other developmentally disabled groups, children with autism have marked difficulty disengaging from one of two competing stimuli: their latencies to disengage are abnormally long, and, on 20% of trials, they remain stuck on the initial central stimulus for the entire 8-second trial duration (Bryson et al., 2004a, Landry and Bryson, in press). These findings parallel those reported for normal 2-month-olds, whose attention has been described as `obligatory (also referred to as `sticky fixation) (Hood and Atkinson, 1993, Johnson et al., 1991). The disengage function normally develops by 34 months of age (Hood and Atkinson, 1993), and is operative in children with Down syndrome (Landry and Bryson, in press). In contrast, impaired disengagement in children with autism is evident even in those with average or above average IQ (Bryson et al., 2004a, Landry and Bryson, in press).

Evidence that this impairment is syndrome-specific and distinguishes children with autism from typically developing 4-month-olds suggests that it may be one of the earliest markers of autism. In fact, impairment in the disengage mechanism of visual attention may underlie the early social orienting deficits in autism, that is, the reduced tendency to orient and attend to ever-changing, novel and socially relevant stimuli. Disrupting the normal bias towards social orienting during the critical time when developing brain circuits are being guided by input from social experiences (Johnson, 2001) may set the stage for developmental pathways characteristic of autism. As a preliminary test of this hypothesis, we have assessed whether abnormalities in visual disengagement are present in infants at risk of autism, and whether evidence of impaired disengagement precedes early behavioral markers of social impairment. Attentional disengagement is assessed using the visual orienting task described above, and also through a play-based behavioral analogue of this task on the AOSI.

Infant temperament: Although there is some conceptual overlap between dimensions of `temperament and behaviors considered to be part of the autistic phenotype (e.g., poor adaptation to novelty or change), temperament may be a useful construct in understanding early developmental differences in infants at high risk for autism. Early abnormalities in attention, behavioral reactivity, emotion regulation and activity level may compromise both the quality and quantity of early social interaction, and thus the prerequisite

129 experiential input for developing neural systems critical to later social-communicative competencies. There are very few studies of temperament in children with autistic spectrum disorders (Bailey et al., 2000, Kasari and Sigman, 1997), none of which includes data predating diagnosis. We have measured temperament based on parent- report using the Infant Behavior Questionnaire (IBQ; Rothbart, 1981, Goldsmith and Rothbart, 1991) at 6 and 12 months, and the Toddler Behavior Assessment Questionnaire (TBAQ; Goldsmith, 1996) at 24 months. The IBQ is a parent-report inventory consisting of six sub-scales that measure different dimensions of temperament: activity level, smiling and laughing, fear, distress to limitations, soothability and duration of orienting. The inventory has been validated for use with infants aged 312 months, and has good test-retest reliability (Goldsmith and Rothbart, 1991). The TBAQ subscales cover activity level, expression of pleasure, social fearfulness, anger proneness, and interest/persistence. The TBAQ is designed for toddlers aged 1635 months, and also has strong psychometric properties (Goldsmith, 1996).

Other developmental measures: Measures of language and cognitive development are administered at multiple time- points, to assess early developmental trajectories, and to better understand the developmental context for the expression of early markers of autism as assessed using the previously described measures. Participants are assessed yearly on The Mullen Scales of Early Learning AGS Edition (Mullen, 1995). The Mullen consists of five scales. Four of the scales (visual reception, receptive language, expressive language and fine motor) assess cognitive ability in four different domains; the fifth measures gross motor development. The Early Learning Composite is calculated based on scores from the first four scales, and is well-standardized for children aged 069 months (the gross motor scale covers 029 months). Additional information regarding early communicative development is obtained using the MacArthur Communicative Development Inventories- Words and Gestures (CDI-WG) (Fenson et al., 1993, Feldman et al., 2000). The CDI- WG is a widely used parent-report measure designed for 8- to 16-month-olds. It has been validated in both a general population and in high-risk samples. The CDI-WG was selected to provide standardized information about early use of gestures, verbal imitation and words outside of the clinic setting.

Assessment of diagnostic outcomes At 36 months, all participants are seen by an experienced clinician, blind to prospective study data and the childs risk status, for a diagnostic assessment using DSM-IV criteria and including the Autism Diagnostic Interview-Revised (ADI-R; Lord et al., 1994) and the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000). The ADI-R is an investigator directed interview that elicits the information regarding social development, verbal and non-verbal communication skills and the presence of repetitive, stereotyped interests and behaviors required to make an ICD10 or DSM-IV diagnosis of autism. The ADI-R discriminates well between autism and other forms of developmental disability, and inter-rater reliability is excellent (Lord et al., 1994). The ADOS is a structured play schedule consisting of several activities designed to elicit the behaviors diagnostic of ASD. Cut-off scores reliably distinguish children with ASD from typical and developmentally disabled non-autistic controls (Lord et al., 2000). The clinician makes a best estimate diagnosis based on his/her clinical assessment together with findings on the ADI-R and ADOS. We have established reliability for this procedure in previous studies (Mahoney et al., 1998). Although formal independent diagnostic assessment occurs at 36 months, participants who meet DSM-IV criteria at an earlier stage are given a clinical diagnosis (confirmed by ADI-R and ADOS) for ethical reasons. Notably, all

130 participants are assessed using the ADOS at 24 months, as a preliminary assessment of social-communication impairments indicative of autism.

Results

Classification of infant siblings at 24 months The preliminary results outlined in this section are based on 65 siblings and 23 control infants who have been followed to at least 24 months of age. Notably, data are incomplete for language and temperament measures, partly because some measures were introduced after the study was initiated, and partly due to incomplete return rates for parent questionnaires (see - Table: [ 2]). Twenty-four-month ADOS scores exceed threshold for autism in 7 siblings, all of whom have subsequently received clinical diagnoses. An additional 12 siblings exceed threshold for `autism spectrum (equivalent to atypical autism) at 24 months. There are little data on the predictive validity of an ADOS classification of `autism spectrum at this early age, and our initial experience is that siblings scoring within this range are a clinically heterogeneous group; most present with language delay or behavioral inflexibility and/or inhibition but with insufficient symptoms for an ASD diagnosis. Many of these children have not yet been seen for independent diagnostic assessment at 36 months, so few conclusions can be drawn regarding this subgroup at this point. We anticipate that some of these children will ultimately meet DSM-IV criteria for the diagnosis of ASD (in fact, this is the case for 2 of 7 who have completed their 36-month assessment). Even those who do not receive a diagnosis of autism or ASD may nonetheless continue to exhibit atypical developmental features that may eventually lead to other diagnoses such as language and/or anxiety disorders. These phenotypes have been reported in first-degree relatives of individuals with autism in other studies (Bailey et al., 1998, Smalley et al., 1995).

Table: Sample description: participants with available data on reported measures Siblings (by 24-month ADOS Classification) Controls Autism ASD* Non-ASD Total 6-month assessment Autism Observation Scale for Infants 4 8 32 44 15 Visual Orientation (Disengage) Task 3 3 19 25 25** Infant Behaviour Questionnaire 1 5 22 28 12

12-month assessment Autism Observation Scale for Infants 7 12 46 65 23 Visual Orientation (Disengage) Task 4 6 17 27*** Mullen Scales of Early Learning 5 6 29 40 12 MacArthur CDI 4 3 28 35 15 Infant Behaviour Questionnaire 4 6 29 39 19

* ASD is autism spectrum disorder classification on ADOS ** 6 month-old controls from normative study of Visual Orienting (Disengage) Task, did not participate in longitudinal study *** Pilot study of Visual Orienting (Disengage) Task in siblings only, disengage latency correlated with quantitative ADOS communication and social algorithm score

Early behavioral indicators of autism We have investigated whether our hypothesized risk markers (as measured by the AOSI) at 6 and 12 months predict ADOS classification at 24 months. It is important to recognize that the clinical status of many siblings may continue to evolve during the third year, particularly in those in the intermediate category of `autism spectrum. Even so, the

131 24-month ADOS provides a standardized quantification of social-communication impairments related to ASD.

Six-month data are available on 44 of 65 siblings followed to age 24 months, as well as on 15 low-risk comparison infants (see - Table: [ 2]). There are no overall differences in the number of behavioral markers observed at 6 months between siblings with an ADOS classification at 24-months, and other infants. There are individual children within the subgroup of siblings with autism classification at 24 months (n = 4) who showed evidence of not orienting to name and atypical sensory-oriented behaviors (e.g., an infant who rubs his hands repeatedly over tables) at 6 months. However, the small sample size, variability among infants later diagnosed with autism and lack of overall difference in risk marker count emphasize that our current behavioral data do not support predictions of later diagnosis based on observations at 6 months.

Greater differentiation of sibling subgroups and comparison infants defined by 24-month ADOS scores is possible from observations made using the AOSI at 12 months than at 6 months. The total number of risk markers (that is, items scored `1 or above) observed at 12 months predicts ADOS classification at 24 months, based on one-way ANOVA (F3,84 = 25.4; P < 0.001). The presence of 7 or more risk markers at 12 months prospectively identified 6 of 7 children diagnosed with autism at 24 months, compared to 2 of 58 non- autistic siblings, and 0 of 23 controls. Although this finding needs to be replicated in the full sample, the sensitivity and specificity of the AOSI for autism in siblings, using a cut- off point of 7 markers, is 84 and 98%, respectively. This is remarkable in comparison to currently available autism screening tools such as the CHAT (Baird et al., 2000, Baron- Cohen et al., 1996). Individual 12-month AOSI risk markers that predict autism at 24 months include atypical eye contact, visual tracking, disengagement of visual attention, orienting to name, imitation, social smiling, reactivity, social interest, and sensory- oriented behaviors (all P < 0.003 to adjust for multiple comparisons).

Disengagement of visual attention Preliminary data on our computerized visual orienting task (Bryson et al., 2004a, Landry and Bryson, in press) indicate that delayed disengagement in this high-risk sample predicts later social-communicative impairment. As noted earlier, on each trial of this task, infants were visually engaged on a central stimulus before either a competing peripheral stimulus or a non-competing stimulus was displayed. The critical manipulation is whether the central stimulus remains `on (disengage and shift trials) or is turned `off (shift alone trials) during presentation of the peripheral stimulus. Latency (in ms) to begin an eye movement to the peripheral stimulus served as the dependent measure. The difference between the 6-month-old sibling and low-risk comparison groups in their ability to disengage and shift gaze to the peripheral stimulus did not reach statistical significance (sibling MEAN = 759 ms, S.D. = 456; control MEAN = 575, S.D. = 312 ms; P = 0.12). However, the sibling group showed a decrement in disengage performance between 6 and 12 months of age (paired difference: MEAN = -753, S.D. = 1183, t(19) = -2.848, P = 0.01). Of those assessed (n = 20), 25% showed longer latencies at 12 months than at 6 months of age, as measured by a difference of more than 1500 milliseconds. Each of the infants who demonstrated a decrement in disengage performance at 12 months relative to their own performance at 6 months received an autism spectrum classification on the ADOS at 24 months. None of the infants who performed similarly or better at 12 months went on to receive an autism spectrum classification on the ADOS at 24 months. As expected, the ability to disengage visual attention at 12 months of age is predictive of ADOS algorithm scores at 24 months (r =

132 0.42, P < 0.05, n = 27). Hence, some siblings of children with autism appear to undergo a developmental change between 6 and 12 months of age: they have more difficulty disengaging attention at 12 months, which then predicts social-communicative impairments at 24 months of age. In contrast, no comparable between group (sibling MEAN = 361 ms, S.D. = 167; control MEAN = 345 ms, S.D. = 210; P = 0.78) or within group age differences (paired difference: MEAN = -49, S.D. = 355, t(19) = 0.08, P = 0.78) were found in latencies to shift attention, nor did the ability to shift attention predict ADOS algorithm scores at 24 months of age (r = -0.04, P = 0.85).

Infant temperament Temperament was measured based on parent report using the Infant Behavior Questionnaire (IBQ; Rothbart, 1981) at 6 and 12 months, and the Toddler Behavior Assessment Questionnaire (TBAQ; Goldsmith, 1996) at 24 months. Siblings with an ADOS classification of autism at 24 months were rated by parents at 6 months as exhibiting lower activity level (F3,37 = 3.75; P = 0.019), and at 12 months with more frequent and intense distress reactions to a variety of stimuli (F3,56 = 4.29; P = 0.009), and longer durations of orienting to objects; that is, a tendency to fixate on particular objects in the environment at the expense of more active visual exploration (F3,56 = 3.91; P = 0.013). At 24 months, these siblings were reported to have less attention shifting (F3,58 = 6.37; P = 0.001), less inhibitory control (F3,58 = 2.86; P = 0.045) and less positive anticipation and affective responses (F3,58 = 2.86; P = 0.045), relative to other siblings and low-risk comparison infants.

Early language and communication skills Not surprisingly, there is evidence of early language delays in children subsequently diagnosed with autism. Subgroups defined by ADOS classification at 24 months differ with respect to language skills at 12 months as measured by the Mullen Scales of Early Learning (Mullen, 1995). Mullen data are expressed as standard scores (SS), with a population mean of 100 and a standard deviation of 15. In the case of expressive language, siblings classified with autism had lower mean scores at 12 months (SS = 86.0, S.D. = 11.0) than both other siblings (SS = 101.1, S.D. = 14.3) and low-risk comparison infants (SS = 100.3, S.D. = 12.8); this difference approached statistical significance (F2,49 = 2.68; P = 0.07). For receptive language, siblings classified with autism had lower scores at 12 months (SS = 80.2, S.D. = 7.2) compared to other siblings (SS = 98.2, S.D. = 14.3), and low-risk infants (SS = 101.5, S.D. = 14.9); here, there is an overall group effect (F2,49 = 5.51; P = 0.007), as well as significant differences between subgroups on post-hoc testing using Tukey LSD. Similar findings are obtained from the MacArthur Communicative Development Inventories-Words and Gestures (Fenson et al., 1993), which was available for 35 siblings and 15 controls. At age 12 months, siblings who are later diagnosed with autism are noted to have fewer gestures (mean = 11.5, S.D. = 4.2) compared to other siblings (mean = 24.5, S.D. = 9.6) and low-risk infants (mean = 31.5, S.D. = 8.2). Siblings later diagnosed with autism also had fewer understood phrases (mean = 3.7, S.D. = 4.1) than other siblings (mean = 13.6, S.D. = 7.2) and low-risk comparison infants (mean = 17.0, S.D. = 4.5). In each case, there is an overall group effect (F2,47 = 8.02; P = 0.001 and F2,47 = 6.92; P = 0.002, respectively) and significant differences between subgroups on post-hoc testing using Tukey LSD. No significant differences were found for expressive vocabulary in this small sample.

Discussion We have summarized our initial findings from a longitudinal study of infants at high risk for autism (siblings of children with the disorder), which indicate that behavioral

133 manifestations of atypical neurodevelopment characteristic of autism may be observed in the first year of life. Our preliminary results indicate that by 12 months of age, siblings who are later diagnosed with autism may be distinguished from other siblings and low- risk controls on the basis of: (1) several specific behavioral markers, including atypicalities in eye contact, visual tracking, disengagement of visual attention, orienting to name, imitation, social smiling, reactivity, social interest and affect, and sensory- oriented behaviors; (2) prolonged latency to disengage visual attention; (3) a characteristic pattern of early temperament, with marked passivity and decreased activity level at 6 months, followed by extreme distress reactions, a tendency to fixate on particular objects in the environment, and decreased expression of positive affect by 12 months; and (4) delayed expressive and receptive language.

These findings may have important implications for clinical practice, and for future research aimed at understanding basic neurodevelopmental processes in autism. To our knowledge, this is the first prospective demonstration that behavioral observations as early as 6 to 12 months of age may be predictive of a later diagnosis of autism. Although parents retrospective reports and home video analyses also point to abnormalities in social orienting, early joint attention behaviors, social interest and affect, these data are primarily based on incidental observations made at variable time points and on sampling strategies that are not fully independent of later outcomes (i.e., parental recall, or how video clips are selected for analysis). In contrast, our observational data are collected using standardized procedures at several points over time that include a systematic set of presses to elicit behaviors, rather than simply observing what occurs incidentally. Our study design also compares siblings with autism to other high- and low-risk infants (that is, non-autistic siblings and unrelated control infants), and most importantly, the observations are made without knowledge of later diagnostic classification.

Taken together, our study findings suggest a striking clinical picture of the child with autism during the first year of life. Based on parent ratings on a temperament questionnaire, children with autism are observed at 6 months to be somewhat passive, with relatively few initiations and less responsiveness to efforts to engage their attention. Informal observations at home and in the research clinic also suggest that these 6- month-olds vocalize less than other infants. At 12 months of age, an assessment of behavioral features using the AOSI finds that eye contact is poor and that there are marked abnormalities in visual attention (including poor visual tracking), in social responses (reduced social smiling, social interest and expression of positive affect) and in use of play materials (lack of imitation and poor coordination of eye gaze and action). Sensory-oriented behaviors in 12-month-olds often involved the use of play materials in stereotyped, self-stimulatory ways (e.g., the child dangles a string of beads and waves them in front of his/her eyes). Data from the temperament questionnaire shows increasing irritability, intense responses to sensory input (often associated with distress) and excessive visual fixation to non-social aspects of the visual environment combined with reduced responses to social approaches from others. Delays in verbal and pre- verbal expressive skills and early language comprehension are also evident on standardized measures, and are corroborated by parent reports and our initial impressions that infants later diagnosed with autism have relatively few vocalizations overall.

Siblings who later develop autism are also observed to have atypical development of visual attention in the first year of life. Specifically, we provide preliminary evidence of difficulties disengaging from two competing stimuli. Interestingly, this problem may not

134 distinguish infant siblings from controls at 6 months, nor is performance at 6 months predictive of later diagnosis. However, initial data on the siblings suggest that their latencies to disengage attention become longer between 6 and 12 months, and that this is particularly characteristic of infants who develop autism. In contrast, typically developing infants show clear decreases in latencies to disengage with age (Hood and Atkinson, 1993), an issue that we will address more directly with larger numbers and appropriate comparison groups.

What developing neural systems are implicated by the behaviors observed in 6- and 12- month-old infants later diagnosed with autism? Our study has identified abnormalities in several neurodevelopmental domains, both social and non-social, but do not yet answer the essential question of how these abnormalities are interrelated, and whether there are primary impairments that initiate the developmental cascade towards the broader phenotype of autism. For example, although a decrease in social orienting may be most characteristic of autism (Dawson et al., 1998), previous studies of preschoolers with autism have suggested a more general impairment in orienting to non-social stimuli as well (Dawson et al., 1998, Landry and Bryson, in press ; Townsend et al., 2001). Mundy, 2003 proposed that a general disturbance in visual orienting in autism may result from impairment in a complex axis of cerebellar, parietal and frontal functions involved in the development and control of attention (Bryson et al., 1990, Carper and Courchesne, 2000, Townsend et al., 2001), and that there may be a complex interplay between the dorsal medial-frontal cortex/anterior cingulate complex, orbitofrontal and amygdala functions, and cerebellar input in the development of social and non-social attention regulation in affected individuals. Whether this model can be applied to atypical orienting patterns in early infancy is uncertain. There may be neural systems that are more operative in visual orienting during infancy than during the preschool years. For example, the observed decrease in attentional flexibility by 12 months of age in our sibling group may correlate with maturational processes of the prefrontal cortex (Johnson et al., 1991), although this remains speculative at this point. Atypical patterns of cortical activation involving the prefrontal cortex have been observed in preschool children with autism (Dawson et al., 2001, Muller et al., 2001).

We emphasize again that the findings Diagnostic assessments at this point are limited to 24-month follow-up data, and in only a portion of our total sample, as many infants have not yet reached this age. As more and more of these children are assessed independently at age 36 months, we can confirm the stability of early diagnoses and the predictive validity of early behavioral risk markers. It may also become feasible to examine heterogeneity in behavioral profiles and developmental trajectories among the group as the total sample size (including the number of siblings diagnosed with autism) increases. Further modification of our measurement protocol may also be necessary to better understand the neurodevelopmental implications of behaviors observed in the first year. The Autism Observation Scale for Infants (AOSI; Bryson et al., 2004b) is a major advance, as it is the first measure specifically developed to assess behavioral manifestations of autism in the first year of life. However, the behavioral coding system was designed to be relatively simple, in order to facilitate applicability in clinical settings for the purposes of early identification. As such, we may be missing subtle qualitative and quantitative differences that may further distinguish children with autism during infancy. We plan to complete more detailed analyses of our AOSI assessments (which are all videotaped) to examine early behavior in greater depth, and to further refine our current coding system, particularly for 6-month-olds.

135 Another limitation of our current study design is the lack of a comparison group of infants at risk for developmental disabilities other than ASD. Although our infant sibling group will most likely include children with language delays, other developmental disorders may not be well represented among our siblings and low-risk controls. It is important both for clinical practice and for understanding neurodevelopment to examine whether early behavioral indicators are specific to autism. To address this, we have begun to evaluate the AOSI in a total population of low birth weight infants who have a high rate of non-autistic language, motor, and general developmental delays (Saigal et al., 1991). Finally, children with autism who have an affected sibling may not be representative of all children with the disorder, so behavioral findings from infant siblings may not fully generalize to other autistic samples.

We have not yet correlated behavioral findings with measures of early brain development. Notably, there are currently no MRI data in individuals with autism prior to age 2 years, which appears to be a critical period with respect to accelerated growth and premature connectivity in brain development (Courchesne et al., 2003, Volkmar et al., 2004). Very few children with autism are diagnosed prior to age 2, although our current longitudinal study could allow us to identify younger infants at very high risk based on multiple behavioral indicators in the first year. In addition, there are significant logistic and ethical constraints to imaging infants (e.g., the need for deep sedation), as well as measurement issues that would need to be addressed prior to undertaking such studies (e.g., establishing methods to reliably differentiate white and grey matter in this age group). Notably, techniques for neonatal brain MRI have been described in other populations (Khong et al., 2003, Erberich et al., 2003), which may be effectively modified for older infants. We are currently considering a feasibility study of using MRI without sedation to assess brain development serially in very high-risk infant siblings. In a related study, we are in the process of analyzing head circumference data in our sibling sample, in order to assess whether accelerated head growth as reported by Courchesne et al., 2003 is associated with particular behavioral features during the first year of life.

Conclusions Our longitudinal study of high-risk infants (siblings of children with autism) has identified several neurodevelopmental abnormalities observable in the first year of life in children later diagnosed with autism. These include atypical patterns of visual attention, orienting and responsiveness to both social and non-social stimuli, and early delays in imitation and language skills. The difference in the number of behavioral markers observed at 12 months of age in children later diagnosed with autism, compared to other high- and low- risk infants, raises the possibility of earlier identification in the general community. However, additional follow-up of the current sample and evaluation of other high-risk samples will be needed to better assess the sensitivity and specificity of these findings. We have outlined various neural networks thought to underlie poor visual orienting in autism, but emphasize that we cannot readily extrapolate from findings from older toddlers and preschool children with autism. Over time, as we are able to prospectively study larger numbers and to examine interrelationships among both early-developing behaviors and biological indices of interest, it should be possible to advance current understanding of the neurodevelopmental origins of autism.

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141 Fetal Alcohol Spectrum Disorder

Author: Margaret Leslie

Introduction A woman’s use of alcohol during pregnancy affects the developing fetus, causing a range of physical and neurological defects. The impact of alcohol varies with the amount, timing and frequency of alcohol consumed, and depends on a number of other factors, including the genetics of the fetus and woman, the health status of the woman, and other social, economic, physical and environmental factors.

In pregnancy, alcohol crosses the placenta at the full concentration that is ingested by the woman, and enters the circulatory system of the fetus. Because of the baby’s small size and underdeveloped liver and enzyme system, it cannot eliminate the alcohol at the same rate as the mother can, so the fetus is exposed to alcohol for longer periods than the drinking mother. Alcohol is a toxic agent that can damage cells in the developing organs. Damage to the cells causes malformation to growing organs, and all fetal organs can be adversely affected. The fetus is forced to divert its energy to metabolize the alcohol instead of using energy to grow healthy cells and tissues. While the alcohol is in the unborn baby’s system, it causes damage. The damage caused by fetal alcohol exposure is permanent. Because fetal brain development occurs throughout pregnancy, drinking at any time during pregnancy can damage the brain. Alcohol affects neural organization in the cortex, and impairs the ability for reasoning and problem-solving later in life.

In Canada the incidence of Fetal Alcohol Spectrum Disorder (FASD) has been estimated to be 1 to 9 per 1000 live births. FASD is the leading cause of developmental and cognitive disabilities among Canadian children (Health Canada, 2003).

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term that reflects the fact that prenatal alcohol exposure may result in a range of effects along a continuum, with differing degrees of expression of dysfunction and malformation. Five diagnostic categories appear along the FASD continuum, and are described.

Prevention FASD occurs in a social context. The reasons why pregnant women use alcohol and other substances are varied and interconnected.

“While it is apparent that children who meet the criteria for FAS are born only to those mothers who consume alcohol during pregnancy, it is also evident that these mothers are subject to other adverse conditions which are major factors in many cases. These include: poor nutrition, poverty, tobacco use, illicit drug use, violence, history of obstetrical problems, lack of prenatal care, among others. Thus, FAS is not simply an issue of alcohol abuse but a complex issue rooted in the underlying social and economic conditions which influence all aspects of maternal and child health”. (CCSA, 1994)

A pregnant woman’s ingestion of alcohol in pregnancy is necessary and sufficient to result in FASD, and her alcohol use must be addressed by physicians and other service providers. In addition, however, the range of issues that contribute to her substance use must also be addressed as much as possible. When physicians and other service

142 providers convey an understanding of the context of women’s lives, and communicate empathy for the circumstances that bring them to alcohol or drug use, it facilitates the development of a helping relationship within which alcohol use may be discussed openly and honestly.

Identification FASD is 100% preventable in theory only. Despite efforts to prevent alcohol use in pregnancy, the complexity of the issues that contribute to women’s substance use may result in their continued use despite their best efforts, and in children being affected by prenatal alcohol exposure.

FASD is often called the “hidden disability”. Because the primary damage of prenatal alcohol exposure is to the brain, the affected child usually does not have a visible handicap that signals the need for special services or interventions. Children who have been prenatally exposed to alcohol may have health/medical, sensory, regulatory and/or physical challenges.

Indicators of prenatal alcohol exposure or FASD in infants and young children

Health/medical problems  Birth defects such as heart problems, and skeletal abnormalities  Susceptibility to infections  Vision and hearing problems  Cleft lip and palate  Anomalies of the urinary tract and genitals  Dental problems  Small stature, and slow weight gain  Poor coordination, poor motor skills, clumsiness

Sensory integration problems  The child may become over-stimulated when around groups of other people, or by sensory stimuli such as bright lights, loud noises, seams on clothing, being touched, certain smells, and so on.  The child may have a high or low tolerance to pain  Poor sucking responses  Overly tactile  The child may have strong food preferences for certain tastes (spicy or bland) or certain textures (crunchy or smooth).

Regulatory problems  Poor habituation  Sleeping disturbances  Feeding difficulties  Failure to thrive  Difficulty adapting to change  Lack of impulse control and emotional over-reactivity  Difficulty self-soothing/self-calming

143 Learning/behavioural problems  Delays in development, especially language development  Difficult following directions  Difficulty learning from auditory information  Poor attention span, difficult completing tasks  Difficulty sequencing and predicting  Problems with memory  Knows the rules, can repeat the rules, but is unable to comply with the rules  Unable to learn from consequences  Destructive behaviour/tantrums  The child may have difficulty with abstract concepts.

Social/communication problems  Overly friendly – lack of fear of strangers; indiscriminate with strangers  The child may not be able to pick up on social cues.  The child does not pick up on subtle hints from caregivers, and needs to be told clearly and concretely exactly what to do, over and over again.  The child may get ‘stuck’ on certain words or behaviours (perseveration).  The child may act younger than his/her chronological age.  The child may tell ‘tall stories’ or be perceived to ‘lie’ a lot (confabulation)

The importance of identification

“Identification is pivotal. It is hard to think of a more radical perceptual shift than the one between ‘wilful misconduct’ to ‘organicity’; from ‘bad child’ to ‘a child with neurological differences’ who has potential” (Kleinfeld and Wescott, 1993)

 Identification and diagnosis of FASD helps parents, caregivers, educators and others to understand that the child can’t perform as opposed to won’t perform. This can prevent misinterpretations of the child’s behaviour and avoid inappropriate responses, discipline and punishment. The diagnosis can lead to treatment plans that centre around and support the child and prevent the development of secondary disabilities.

 Having a diagnosis of FAS prior to the age of 6 years of age is a key protective factor for the development of secondary disabilities. Secondary disabilities are defined as those that an individual is not born with, and that could presumably be ameliorated through better understanding and appropriate interventions. The following secondary disabilities that have been identified in individuals with FASD are: o Mental Health Problems o Disrupted School Experience o Trouble With the Law o Confinement o Inappropriate Sexual Behaviour o Alcohol/Drug Problems (Streissguth et al, 1996)

144 Assessment and Diagnosis Fetal Alcohol Syndrome (FAS) was first reported by Lemoine et.al. (1968) and then independently identified and named by Jones and Smith (1973). In 1996, the Institute of Medicine (Stranton et al, 1996), proposed a revision of the diagnostic criteria for FAS and other alcohol-related effects to reflect current knowledge of the field. The following are two key revisions in the diagnostic classifications developed in 1996:

 Establishment of a category for assigning the FAS diagnosis without maternal history, when all other necessary conditions are present. For children in the foster care system, foreign adopted children, and for fostered or adopted adults, information regarding prenatal exposure is often uncertain or unavailable. In other cases, the birth mother may not recall the specifics of her alcohol use in pregnancy or may be unwilling to report her use accurately. This category allows for the possibility of the diagnosis -- and the clinical benefits that come with the diagnosis -- when all other necessary conditions are present.

 Elimination of the term Fetal Alcohol Effect (FAE), which had been criticized for lacking specificity and sensitivity. Because of this, it was difficult to identify appropriate services or plan appropriate interventions.

Assessment and diagnosis of FASD is facilitated by an accurate history of the mother’s alcohol use in pregnancy, which is best gained within the context of a trusting, respectful and non-judgemental relationship with the mother.

Diagnostic Categories (Stranton et al, 1996)

Category 1: Fetal Alcohol Syndrome with confirmed maternal alcohol exposure

1. Prenatal and/or postnatal growth restriction  Low birth weight  Decelerating weight over time, not due to malnutrition  Disproportional low weight to height  Height and weight below the 10th percentile

2. Central nervous system involvement  Neurological abnormalities (incl. impaired motor skills, poor coordination, hearing loss, visual problems)  Decreased head size (microcephaly)  Behavioural dysfunction (incl. problems in memory, attention, reasoning and judgement, mental handicap, learning difficulties, deficits in some mathematical and language skills)  Structural abnormalities of the brain

3. Characteristic facial features  Small eye openings (palpebral fissures)  Thin upper lip  Flattened cheekbones

145  Flattened groove between nose and upper lip (philtrum)

Category 2: Fetal Alcohol Syndrome without confirmed maternal alcohol exposure

If the triad of signs described in category 1 is present, a diagnosis of FAS may be made even in the absence of confirmed maternal alcohol exposure.

Category 3: Partial FAS (pFAS)

1. Evidence of some components of the pattern of characteristic facial anomalies 2. Evidence of one other component of FAS, I.e. growth deficiency or neurological involvement, including related behavioural and cognitive problems 3. Confirmed history of maternal alcohol use in pregnancy

Category 4: Alcohol Related Birth Defect (ARBD)

1. Congenital anomalies, including:  Skeletal abnormalities  Heart defects  Cleft palate and other craniofacial abnormalities  Kidney and other internal organ problems  Vision and hearing problems 2. Confirmed history of maternal alcohol use in pregnancy

Category 5: Alcohol Related Neurodevelopmental Disorder (ARND)

1. Central nervous system abnormalities, including:  Microcephaly  Structural brain abnormalities  Neurological hard or soft signs (e.g. impaired fine motor skills, hearing loss, poor gait, poor eye-hand coordination) and/or

146 2. Behavioural or cognitive abnormalities that are inconsistent with developmental level and cannot be explained by familial background or environment alone, such as:  Learning difficulties  Poor impulse control  Problems in social perceptions  Poor capacity for abstraction

Differential Diagnosis Many of the anomalies associated with prenatal alcohol exposure are not unique to FASD and can be confused with other disorders or conditions. Syndromes that have been confused with FAS are conditions that feature growth deficiencies and facial anomalies that are suggestive of FAS. Conditions often confused with FAS due to similar appearance are Aarskog syndrome, Williams syndrome, Noonan’s syndrome, Dubowitz syndrome, Bloom syndrome, fetal hydantoin syndrome, maternal PKU fetal effects, and fetal toluene syndrome (Stranton et al, 1996).

Other syndromes confused with FAS because of similarities in complex cognitive and behavioural profiles are fragile X syndrome, velocardiofacial syndrome, Turner’s syndrome and Opitz syndrome (Stranton et al, 1996).

Diagnosis of FAS and related effects requires a multidisciplinary focus. Multidisciplinary teams typically include a physician (paediatrician or geneticist) and a psychologist, and some also include speech/language pathologists, physio or occupational therapists, and social workers (Roberts and Nanson, 2000).

For information about local FASD diagnostic teams, contact the FASD Information and Consultation Service at www.ccsa.ca.

Once a diagnosis along the FASD continuum has been confirmed, interventions to support the child’s physiological, behavioural, emotional and cognitive characteristics must be developed. Planning effective interventions requires the use of all relevant diagnostic information as a basis for an on-going systemic application of a range of medical, social, behavioural and learning strategies. This requires referrals to community resources which may include early intervention services, developmental follow-up, medical care, educational interventions and parent support.

Medication for FASD Children with FASD may have mood or behaviour problems that originate from prenatal alcohol exposure, the early environment and/or genetics. Health care providers should consult a pediatrician with expertise in FASD or psychiatry, concerning medications for children with FASD. Medication for FASD is rapidly evolving, highly individual and not usually recommended for young children.

147 INTERVENTION

Intervention Point Intervention Activity Intended Outcome

Prenatal Obstetric care Counselling and education Fewer pregnant women Prenatal clinic about drinking drinking Substance abuse treatment Substance abuse treatment Improved prenatal care and case management Improved pregnancy outcomes

Birth Nursery Neonatal diagnosis, Improved medical Obstetrics Clinic identification, and treatment outcome Treatment for mother Reduced future FAS births Periodic developmental Improved mothering assessment and follow-up Reduced mortality Improved child outcome

Infancy (0-3yrs) Health care clinics Developmental screening Improved case finding and High-risk follow-up Early intervention services referral to treatment or Emergency room Medical care intervention Protective services Speech therapy Improved developmental Physical therapy outcome Occupational therapy Emotional, social Foster care placement

Preschool (3-6 yrs) Health care clinics Medical services Improved health Pediatricians Education interventions Improved parenting Preschool programs Intervention with parents, Improved developmental parenting classes outcome

(Roberts and Nanson, 2000)

148 As part of the range of interventions to be considered, support for the families of children with FASD must be not be forgotten. Families of children with FASD may require support to understand their child’s disability, to access appropriate interventions and supports, to care for the child on a day to day basis, and to receive support and respite for themselves. Referrals to professionals who may advocate on behalf of families should be considered, as should information on parent support groups for parents with children with FASD.

Talking with Parents and Caregivers about FASD Children with FASD may be cared for by biological parents, foster or adoptive parents, or extended family members. Identification of children with FASD provides benefits to the child, as well as parents, caregivers, and society. Most parents and caregivers are eager to do all they can to assist their child in accessing the interventions and supports that they may require. The process may also motivate a birth mother to address her substance use issues, and prevent the births of subsequent affected children.

As parents and caregivers come to recognize their child’s differences, acknowledge and accept the reason for the differences, and embark on the process of accessing appropriate assessment, diagnostic, and intervention services, they require different types of support. The process of recognition, acknowledgement, acceptance and action is a gradual, rather than a sudden event. While all parents may experience similar feelings during this process, such as guilt, shame, depression, anger, grief and mourning, the source of these feelings may vary depending on whether it is a biological parent, foster or adoptive parent, or an extended family member. It is important to be sensitive to the individual experiences and responses of parents and caregivers. When talking to parents and caregivers about FASD, try to be non-judgemental, empathic, respectful, gentle, knowledgeable and receptive and roll with any resistance.

Here are some things to consider when talking to parents and caregivers about FASD:  Develop rapport and establish a relationship with parents or caregivers  Raise consciousness of the possibility that prenatal alcohol use may be a factor  Provide information about FASD  Talk about the benefits of diagnosis and intervention  Provide information about programs and services for children with FASD  Link them to support programs for parents and caregivers  Help the parents and caregivers come up with a plan that includes diagnosis and strategies for parenting and school  Recognize successes and provide positive feedback  Anticipate future needs and concerns of the family

Based on Nurturing Change, 2004, www.mothercraft.ca/database/projects_publications/Nurturing%20Change%20Final- GR1.pdf

149 Conclusion This chapter has presented an integrated framework for understanding and responding to FASD issues:  in the prevention or reduction of harms associated with alcohol or other substance use in pregnancy  in the timely identification of children who may have special needs stemming from prenatal alcohol exposure  in the assessment and diagnosis of children who have been identified with challenges stemming from prenatal exposure to alcohol  in the referral for interventions which capitalize on strengths, support special challenges, and prevent the development of secondary disabilities.

References Canadian Centre on Substance Abuse (CCSA) National Working Group on Policy (1994). Fetal Alcohol Syndrome: An Issue of Child and Family Health. A Policy Discussion Paper. http://www.ccsa.ca/pdf/ccsa-004978-1994.pdf

Health Canada (2003). Fetal Alcohol Spectrum Disorder (FASD): A Framework for Action. Ottawa: Minister of Public Works and Government Services Canada.

Jones KL, Smith DW (1973). Recognition of the Fetal Alcohol Syndrome in early infancy. The Lancet, November: 999-1001.

Kleinfeld J, Wescott S (Eds.) (1993). Fantastic Antone Succeeds: Experiences in Educating Children with Fetal Alcohol Syndrome. University of Alaska Press.

Lemoine P et al (1968). Les enfants de parents alcoholique: Anomalies observees a propos de 127 cas. [The children of alcohol parents: Anomalies observed in 127 cases]. Quest Medicale, 2:476-482.

Stratton K, Howe C, Battaglia F (Eds.) (1996). Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention, and Treatment. Washington, D.C.: National Academy Press.

Streissguth AP, et al (1996). Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Seattle: University of Washington School of Medicine.

Additional Reading: Loock C, Conry J, Cook JL, Chudley AE, Rosales T (2005). Identifying fetal alcohol spectrum disorder in primary care. CMAJ, 172 628-630 http://www.cmaj.ca/cgi/content/full/172/5/628?etoc

Chudley AE, Conry J; Cook JL, Loock C, Rosales T, LeBlanc N (2005). Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. CMAJ, 172(5 suppl): S1-S21 http://www.cmaj.ca/cgi/reprint/172/5_suppl/S1.pdf

150 Environmental Checklist

Author: Tara Zupancic

Many people come in daily contact with things in their environment that can affect their health and their ability to have a healthy child. Over 23,000 chemicals are in use in Canada, and some chemicals are known to be hazardous. Most chemicals have not been studied enough for their harmful effects on the reproductive health of women and men, pregnancy and children. We do have information about many hazards and it is a good idea to become aware of everyday exposures and to learn how to avoid them.

Most babies are born healthy but it is important to improve the chances of this happening. You can make choices and changes before pregnancy to improve your health as future parents and to create a healthier environment for your future family. Here are four brief checklists that will help you learn about possible hazards and how to improve your environment.

The Air You Breathe Chemicals and other substances can accumulate indoors at home and at work and pollute the air we breathe. Common chemicals and substances include: cleaners, insect sprays, carpet fumes, wet paints, air fresheners, candle fumes, fumes from gas appliances, dust mites and moulds. These invisible pollutants can collect in dust particles, carpets, curtains, furniture and in the air we breathe. We need to get rid of them and to avoid collecting more pollutants.

Fresh Air Checklist  Open your windows and use exhaust fans. Make sure your home breathes!  Fresh air dilutes chemical fumes and open windows allow chemicals and other pollutants to escape instead of staying inside. Open your windows on days when the air quality is good and at times when there is not as much traffic.  Dust once a week with a damp cloth. Dust is a combination of chemical and biological substances such as dust mites, molds and pet dander. Regular cleaning of carpets drapes and furniture that will trap dust will reduce dust and dirt in your air.  Air out and wash rugs and furniture  Damp dust mattresses and pillows covers weekly to prevent dust mites. Wash sheets, pillow- cases and blankets in hot water.  Vacuum and change the vacuum filter regularly.  Use a dehumidifier in damp or musty areas, get rid of any moldy rugs and repair leaks to prevent mold contamination.  Avoid using a humidifier as it helps mold and dust mites to thrive.  Have your furnace checked regularly and install a carbon monoxide detector.  Replace your furnace filters regularly and have your heating ducts cleaned as needed.  Ventilate your work area. Use a fan, open a window, and keep plants nearby to help filter the air.  Do not allow smoking in the house. Ask guests to smoke outside.  Plant a tree in your yard and keep houseplants. Trees and plants improve the air quality in and around your home by filtering the air. .

151 Resources Canadian Lung Association - Learn how to improve indoor air quality by visiting the Canadian lung Association’s virtual home at www.YourHealthyHome.ca or call 1-800- 972-2636

The Canadian Mortgage and Housing Corporation – Download their Healthy Housing Fact sheets at their website http://www.cmhc-schl.gc.ca/ or call 1 800 668-2642

The Food You Eat Planning a pregnancy means thinking about healthy eating. Unfortunately some foods contain environmental contaminants such as mercury and hard to get rid of persistent chemicals that build up in our bodies overtime. Foods high in animal fat are more likely to contain these persistent chemicals. Some of these stored chemicals may be passed through the placenta during pregnancy. Some persistent chemicals have also been associated with damage to sperm quality. Many are linked to negative effects on child health and development. For example, methyl mercury, often concentrated in fish, is highly toxic to the baby’s developing brain and nervous system. Removing persistent contaminants from the environment depends on government and healthy environmental policy. In the meantime, the following checklist points out ways to reduce exposure to these contaminants while maintaining a healthy diet.

What’s in your Food Checklist  Choose fish wisely. Fish is low in saturated fat, an excellent source of protein and rich in omega-3 fatty acids that are very beneficial to health. However fish can be contaminated with mercury.  Couples planning a pregnancy, pregnant women, breastfeeding women and children should avoid fish that contain higher levels of mercury including fresh tuna, swordfish, king mackerel, shark, barramundi, gem fish, orange roughly, tilefish, walleye and northern pike.  Choose fish and seafood low in mercury such as canned tuna, wild pacific salmon, bass, clams, cod, crab, flounder, haddock, halibut, herring, mackerel, oysters, perch, pollock, scallops, shrimp, snapper, sole, squid, tilapia and trout. Canadian guidelines give information about on how much canned tuna women of childbearing age, pregnant women, breastfeeding women and children should eat.  When buying canned tuna, look for flaked tuna (Skipjack or Yellowfin tuna), which contain lower levels of mercury than Albacore, Bluefin, or fresh tuna.  Trim the fat from meats to reduce their fat content and avoid eating the skins of fish and poultry.  Cook meat, fish and poultry using a method that allows the fat drips off of it, such as grilling or baking.  Try to eat more vegetable based protein such as beans, legumes and grains and use vegetable oils like olive or sunflower. These foods are low in fat and contain fewer persistent chemicals.  Try to buy organic or locally grown produce. Buying locally grown produce reduces energy use for transportation and storage and reduces pollution and waste. If you have a limited budget for organic food, spend it on foods that are higher in animal fats such as meat, poultry, eggs & dairy.

152  Wash and peel non-organic fruits and vegetables to reduce exposure to pesticides.  Use glass or ceramic dishes to reheat or microwave food. Do not use plastic containers or plastic film wraps as heating can cause the chemicals in the plastic to leach into the food.  Check your water. If you suspect that your water could be contaminated on route to your house by lead pipes you should have your water tested. You can buy test kits at most hardware stores. Let the tap water run for several minutes in the morning to flush any lead out. Use cold water from the tap for cooking & drinking.

Resources To learn more about mercury contamination, fish consumption and find links to current Canadian guidelines visit the Health Canada website at: http://www.hc- sc.gc.ca/english/iyh/environment/mercury.html or call (613) 957-2991

To learn more about persistent organic pollutants in food visit the Environment Canada Website at: http://www.ec.gc.ca/pops/brochure_e.htm or call 1-800-668-6767.

Everyday Chemicals You Use Many different cleaning products and body care products which we use everyday may contain harmful substances which may not be listed on the package. Cleaning products often contain ingredients that have not been fully studied, for their health impacts on pregnant women and children. There are many milder cleaning products that are effective and won’t harm your health or the environment. Whenever possible, avoid using harmful household products (e.g., pesticides, air fresheners, furniture polish) and use non-toxic alternatives instead.

Everyday Chemicals Checklist  Avoid using mothballs, flea collars or pesticides in your home and garden. Chemicals in soil and lawns can be tracked indoors. These chemicals can collect in carpets and remain there for a very long time. Some pesticides can accumulate in our bodies. Exposure to certain pesticides has been associated with reproductive problems and damage to sperm. Couples planning a pregnancy, pregnant women and breastfeeding women and children should avoid exposure to pesticides.  If you work with environmental chemicals, check the information sheets and speak to your health care provider about these exposures.  Avoid extra-strength cleaners, which may contain solvents, acids and other corrosive chemicals. Use mild cleaners, such as unscented, general-purpose soaps and detergents.  Look for non-toxic household cleaners or make your own. For example, make your own furniture polish by mixing one part lemon juice with two parts vegetable oil. Use baking soda and water to clean ovens, bathtubs, sinks, and toilets.  Avoid air fresheners. Air fresheners contain chemicals that actually pollute rather than freshen indoor air. Instead of using an air freshener, remove the cause of the smell, open windows and use fans to air out the room.  Avoid dry cleaning. Dry cleaners tend to use harsh chemicals that can remain in clothes. When we wear the clothing, harmful chemicals can be absorbed through our skin. Choose to use a mild soap and wash by hand or use the gentle

153 machine setting. You can also choose a dry cleaner that advertises solvent free cleaning.  Look for natural ingredients in body care products. Many body care products are absorbed through the skin and can contain harmful chemicals such as formaldehyde and phthalates. Many have not been fully tested for their effects on pregnant women and children and can contain persistent chemicals.  Choose products that list ingredients on the package. Avoid products with long ingredient lists, dyes (bright colours) and strong fumes or scents.  Choose natural essential oils instead of perfumes. Perfumes are absorbed through the skin and may contain formaldehyde and other chemical such as phthalates that may be harmful to our health.  If using hair or body sprays open a window and ventilate the area. Reduce exposure to hazardous products by using them only where needed, follow the manufacturer’s instructions and ventilate the area.

Resources Nova Scotia Allergy and Environmental Health Association. Provides information about the health risks of everyday household products and suggests healthier product alternatives for personal care, household cleaning, baby care and household pesticide control. Visit their website http://www.lesstoxicguide.ca or call 1-800-449-1995

First Steps for New Families - http://www.checnet.org/improve_firststeps.asp First Steps is a monthly email program designed for couples planning a pregnancy, pregnant parents and parents with a newborn or young children. They provide monthly tips on how to create a healthy environment at home.

Renovations You May Make Planning a pregnancy often means fixing up your home in preparation for a future baby. However, there are many hazards associated with renovating. As floors, walls and ceilings are repaired or replaced, toxic substances such as lead, asbestos, pesticides and mould can be released into the air. Rebuilding with new materials can also result in exposure to harmful substances, including volatile organic compounds (VOCs), which give off harmful fumes at room temperature, formaldehydes, paint fumes, dust and fungicides. Sanding, especially, in homes built before 1976, can release lead that collects in dust and indoor air.

Renovation Checklist  Couples planning a pregnancy, pregnant women, and young children should stay away from areas being renovated until the work is completed and the space has been ventilated, cleaned and all dust has been removed. Use plastic sheeting to separate living spaces from areas under renovation, and dust everyday to prevent the travel of hazardous substances. Plan to complete renovations three months before trying to conceive.  Couples planning a pregnancy should avoid working with strong glues, adhesives or solvents. If possible, hire a professional to do this work and leave the house until the work has been completed and properly ventilated.  Avoid pressure treated wood, which can contain arsenic, and particleboard, which gives off formaldehyde fumes. If these products are used give time for them to air outside before installing in the home.

154  Avoid sanding old painted surfaces. Sanding can release lead into the air that accumulates in the carpet and dust and gets re-circulated in the air. This can be a very serious hazard especially if the house was built before 1976 when lead levels in paint were quite high. If possible paint over chipped or cracked paint instead of sanding. Make sure paint chips are removed and dust regularly.  Use ceramic tiles, linoleum, or hardwood on your floors if possible rather than carpeting. Carpeting collects dust, chemicals and other substances.  New carpets, drapes, and stuffed furniture can release chemical contaminants (e.g., formaldehyde, flame retardants, benzene, xylene) that can cause headache, fatigue, and difficulty breathing. Try to buy furniture made of solid wood. If new carpets or furniture are giving off fumes, air them outside or open windows for long periods of time.  Look for safer building or construction materials such as low emission or natural fibre carpets, non-toxic glues and water-based paints displaying the Canadian Ecologo.  Whenever you start a renovation project, take care by following instructions, Have good ventilation and wear protective equipment such as masks, goggles and gloves.

Resources Prescription for a healthy house: Practical Guide for Architects, Builders and Homeowners http://www.herc.org/hhc/hhbook.html

The Canadian Mortgage and Housing Corporation – Download their Healthy Housing resources including their Healthy Housing Renovation Planner at their website http://www.cmhc-schl.gc.ca/ or call 1 800 668-2642.

155 Section 6: Aboriginal Families Aboriginal Healthy Child Development for First Nations, Métis and Inuit People

Authors: Marion Maar, Claudette Chase, Laurie C. McLeod, Margaret Munro

Introduction: Cultural competence in health care for First Nations, Métis and Inuit People Indigenous people worldwide, as well as cultural and racial minority populations, experience poor health status when compared to the general population. The causes can generally be traced to the existence of social, economic, and political power imbalances. Health inequality in these groups is evident most commonly in three major areas: 1) the social determinants of health, including high rates of poverty, unemployment, lack of food security, and detrimental environmental factors 2) cultural, socioeconomic, and systemic access barriers to the health care system 3) disparities in the quality of medical care, including diagnostic work-up and medical treatment (Geiger, 2001)

In Canada, increased morbidity and mortality affects Aboriginal people as well as many immigrant groups, compared to the mainstream population (Geiger, 2001). Multi-sectoral interventions, involving health, social, economic, and environmental sectors, will be necessary to improve this complex health issue. In the health care sector, the well- documented cultural disparity in the quality of health care will require attention. The health care literature shows mounting evidence that culturally competent health care is necessary to provide quality care to minority groups and improve the current rates of poor health outcomes (Reynolds, 2004). In addition, accommodating patients’ cultural values is also a key aspect of patient-centred care in family medicine (Singer and Todkill, 2000). As the Canadian population is becoming increasingly diverse culturally, (Ontario Ministry of Finance, 2003) there are important implications for the provision of physician services and for the education needs of health care professionals in general. Canadian physicians practice medicine in a culturally diverse context and are thus challenged to provide care for patients with many different cultural backgrounds.

Culturally competent care – also referred to as culturally effective care – is defined by the American Academy for Paediatrics as “the delivery of care within the context of appropriate physician knowledge, understanding and appreciation of all cultural distinctions leading to optimal health outcomes” (Committee on Pediatric Workforce, 2004). The Canadian Paediatric Society has not yet posted a policy statement on culturally competent care. The attention on culturally competent care has, at this point in time, gained greater momentum in the U.S., in part because culturally competent care is hypothesized to improve health outcomes and contain health care costs. The American Academy also points out that the concept of cultural competence in health care is expanding to include much more than health care provider awareness of cultural differences; rather, culturally competent care includes access to interpreter services, the

156 consideration of patients’ illness experiences, and patients’ rights to respectful and non- discriminatory quality care (Committee on Pediatric Workforce, 2004).

Treating Aboriginal patients requires culturally competent care and freedom from bias (Geiger, 2001). It is important for health care professionals to know about Aboriginal histories and cultures in order to work effectively with Aboriginal people (Browne and Smye, 2002). While this kind of care should be available to people of all backgrounds, it is important for health care providers to understand that there are important differences between Aboriginal people and other ethnic or minority groups in Canada. The differences are anchored in the history of Aboriginal peoples’ interaction with the dominant Canadian culture, the impact of colonization, forced assimilation policies, and marginalization by the mainstream culture. These ongoing power imbalances have had many effects on Aboriginal people, including negative health consequences. Systemic racism and the inter-generational impact of the residential school system have resulted in health and mental health problems in Aboriginal communities, a link that is well- supported by the health care literature. Racism has also had an impact on individuals’ self-esteem, social and family interactions, and their ability to parent. Racism also affects the determinants of health and leads to inequity in employment and other opportunities, and consequently increased poverty. The impact of colonization on multiple generations of Aboriginal peoples, on their health and community life, is also documented in the current health research literature and acknowledged by governmental health reports. For example, a recent report by the Canadian Institute for Health Information states:

Social, economic and environmental conditions have had a profound impact on the health of Aboriginal Peoples in Canada. Treaty negotiations, the loss of land from Aboriginal Peoples to settlers, the organization of power and governance, the provision of services such as health and education—are just some of the factors that have had a significant impact on the lives, cultures and health of Aboriginal Peoples and communities. The contemporary health and well-being of Canada’s Aboriginal Peoples must be viewed in this broad historical and social context. There are many different views among Aboriginal researchers about what affects the health of Aboriginal Peoples. Many factors are similar to those that affect Canadians in general, but some particular factors that are often cited include colonialism and the legacy of the residential school system, the effects of climate change and environmental contaminants on the health of Inuit, and community control and self-determination (Canadian Institute for Health Information, 2004).

It is important to note that many studies show that Aboriginal ancestry itself is not a risk factor to health when researchers control for socioeconomic status, health-damaging behaviours, and the presence of comorbidities (Cass, 2004).

Despite the health challenges, there are also many strengths and positive developments in Aboriginal communities. Aboriginal cultures generally emphasize strong family bonds and a community responsibility to raise and care for children. Aboriginal people have retained many aspects of their unique and vibrant culture, despite attempts at assimilation. Today, there is even a strong resurgence of Aboriginal culture and healing traditions. Aboriginal people are also increasingly developing their own culturally-based strategies to improve the health and well being of their communities (Maar, 2004).

157 Physicians and Aboriginal Patients Many Canadian physicians regularly provide services to Aboriginal patients. Physicians in Ottawa, for example, have seen a large increase in Inuit patients since acute care for Inuit patients from Nunavut was transferred to the national capital in 1998 (Kent, 2000). In a 2001 survey of family physicians (conducted by the Canadian College of Family Physicians), 48% of all physicians practicing in geographically remote settings reported that Aboriginal people comprised a significant portion of their patients. This was also true of 23% of physicians in emergency departments, 19% of physicians in community health centres, and 17% in walk in clinics (CFPC, 2001). It is important to note that physicians are likely underreporting their encounters with Aboriginal patients for two reasons. First, there is no Aboriginal identifier related to OHIP cards; thus, no reliable data source to trace Aboriginal patient encounters with physicians. Second, many Aboriginal people can easily use health care services undetected because they do not fit the common idea of Aboriginal physical characteristics. Aboriginal people vary in skin colour, eye colour, hair colour, and other physical characteristics; health care providers cannot assume that they are able to identify patients with Aboriginal ancestry without confirmation from their patient.

Many Canadian family medicine programs provide some exposure to Aboriginal health issues but research shows that residents need more expertise and would benefit from further learning opportunities (Redwood-Campbell et al., 1999). This chapter provides for physicians an introduction to issues that are of relevance for the provision of health services to Aboriginal patients, including Aboriginal peoples’ diversity, history, culture, health, and traditional Aboriginal medicine issues. It is intended to provide some basic facts about Aboriginal people and provide some specific information about what physicians can do to provide culturally effective care for Aboriginal people. Resources for further learning are provided at the end of this chapter.

Aboriginal diversity The term Aboriginal is used in this chapter as defined in the Canadian Constitution Act, referring to all people of indigenous descent, including First Nations, Inuit, and Métis. The term Indian, is considered a misnomer and offensive by many Aboriginal people when used by non-Aboriginal people and has been largely replaced by First Nations (Government of Canada, 2003). The term Status Indian is still in common use because it is a legal term and implies that a person has certain rights related to, for example, health care and education, which are documented in the Indian Act of Canada. First Nations, Inuit and Métis peoples have distinct cultural identities, histories, value systems, and health care needs; a basic overview will be provided in the following pages. In total, there are approximately 50 different Aboriginal cultural groups with 50 distinct languages in Canada (Smylie, 2000). While there are significant differences between Aboriginal peoples, it is important to note that there is also great diversity within each community, even within each family.

The impact of mainstream culture on Aboriginal communities has varied considerably. “Culture” refers to customs, behaviours, beliefs and values that are learned and, to a significant extent, shared within a group of people. Cultures are never static; they change and adapt to internal and external influences. Most Aboriginal cultures have interacted with mainstream Canadian cultures for centuries, and both have incorporated aspects of the other’s culture into their own.

158 We define “traditional practices” in this paper as those customs that have changed little over a significant time span. For example, traditional practices may be seen in hunting, spirituality, arts and social gatherings. Aboriginal people who live in relatively isolated communities often retain many of their traditional practices. In recent decades, there has been a strong resurgence of traditional Aboriginal knowledge and beliefs in many Aboriginal communities.

According to the 2001 Canadian census, nearly one million people (3.3%) identified themselves as Aboriginal although the actual number likely exceeds that; the Canadian census underestimates the Aboriginal population by tens of thousands, primarily because many Aboriginal communities are not enumerated. This group of Aboriginal people can be broken down thus:

National statistics  approximately 62% First Nations,  30% Métis,  5% Inuit, and  3% with more than one identity. (Kue Young, 2003)

Ontario provincial statistics  188,315 people identified as Aboriginal,  131,560 identified as First Nations (69.9%),  48,345 as Métis (25.7%), and  1,380 as Inuit (0.7%). (Ontario Ministry of Finance, 2003)

The Aboriginal population is much younger than the Canadian population (25 versus 35 years) with proportionately twice as many children under the age of 15 years (38% versus 20%) (Smylie, 2000).

On average, young Aboriginal people are better educated than ever before. According to the Canadian Census, in some communities, Aboriginal youth under the age of 25 are as likely as all Canadian youth to graduate from high school. The number of Aboriginal people with a post-secondary education has seen a dramatic increase as well. In 1969, there were only 200 Aboriginal people with post-secondary credentials; now there are 40,000 (Government of Ontario, 2002).

First Nations (Status Indian) and Inuit people are registered with and are entitled to certain health benefits from the federal government. For the individual these health benefits include some services not covered under the provincial medical care programs, such as a dental plan, a drug plan, and assistive devices. The First Nations and Inuit Health Branch website provides details on current coverage. For further information, see www.hc-sc.gc.ca/fnihb-dgspni/fnihb/nihb/. Métis and non-Status Indians do not receive any individual health benefits from the federal government, although there are health promotion programs available in some communities. Other health services, such as physician services, are covered under the provincial Medicare program.

159 First Nations People Healing means mending bodies and souls. It also means rekindling the flames that strengthen our Native spirituality. It means physical, mental, psychological and emotional well-being. This is known in Native healing circles as the holistic approach to healing

Aboriginal Elder, Southern Ontario Region (RCAP Report, 1996)

There are over 600 First Nations communities in Canada and a total of 134 in Ontario. Approximately 35% of this population resides on-reserve and the other 65% resides off- reserve, often in urban centres. Familiarity with mainstream culture varies; some First Nations people have spent most of their lives on reserve, others in urban centres, and many move back and forth.

There are many differences between northern and southern reserve communities, most notably the degree of isolation and access to health services, healthy foods, education, and economic opportunities. There are many different Aboriginal languages in Ontario and some communities retain much of their traditional language. English is a second language for many First Nations people, especially older people, in Northern communities. Even some younger people who are fluent in English may feel more comfortable discussing difficult issues in their first language.

First Nations people typically belong to a specific Aboriginal nation such as Cree, Mohawk, or Ojibway (Anishinabe). Ontario First Nations are united in a political confederacy which is comprised of Political Territorial Organizations (PTOs). These include the Association of Iroquois and Allied Indians, Grand Council Treaty #3, Nishnawbe-Aski Nation, the Union of Ontario Indians, and Independent First Nations (see map in Figure 1 for the location of First Nation communities and their PTO affiliations).

160 Figure1: Map of First Nations in Ontario (Chiefs of Ontario, 2005)

Inuit People One of the common myths or stereotypes about Inuit culture is that we are almost always experiencing hunger, if not actual starvation. People from the outside world have a difficult time understanding that an environment that looks so empty can actually offer great abundance in every season of the year (Aboriginal Healing Foundation, 2003).

Approximately 45,000 Inuit live in Canada, with the majority living in 53 communities spread across two provinces and two territories. More than 90% of Inuit communities are accessible by air only (NAHO, 2005). Some urban centres such as Ottawa also have a significant Inuit population. Inuit communities are located in the following arctic regions (for a map of these regions see figure 2) (CIHI, 2004): • Nunavut Territory – home to about half of all Inuit. • Inuvialuit (Western Arctic) – home to approx. 9% of Inuit. • Nunavik (Northern Quebec) – home to 21% of Inuit. • Nunatsiavut (Northern Labrador) – home to 10% of Inuit.

161 Figure 2: Inuit Territories in Canada (adapted from: Inuit Tapiriit Kanatami. (2003). Inuit of Canada. Ottawa: Inuit Tapiriit Kanatami.)

Inuit culture, values, and practices are unique and significantly different from First Nations and Métis people and vary by region. Inuktitut dialects are the predominant spoken and written languages used on a daily basis. Many adults and children speak English as a second language. The Inuit population is also demographically unique. Thirty-nine per cent of the Inuit population is under the age of 14; this makes it the youngest population in Canada. In addition, Inuit birth rates are double the Canadian average (NAHO, 2005). This demographic reality illustrates a critical need for health education and disease prevention programs targeted at children aged 0-6.

The costs of living and providing health services in Inuit communities are the highest in all of Canada. Many health services are not available locally and most communities and regions suffer from severe physician shortages (Inuit Trapiriit Kanatami, 2005). Seriously ill patients normally receive medical transfers by air ambulance to southern cities, such as Ottawa. The long-term isolation from families and communities associated with medical evacuation is challenging and traumatic for most Inuit patients. Children and their parents are particularly affected.

Métis “I think of healing as a life process. Everything that is alive is engaged in a continuous process of maintaining balance, and that dynamic process is what I think of as healing.”

Dr. Carl Urion, Dearborn River Métis, Professor Emeritus, University of Alberta, 2004 National Aboriginal Achievement Award Winner (NAHO Metis Centre, 2004)

The Métis Nation emerged as a distinct people in the 18th and 19th centuries. They are the descendents of European fur traders and Aboriginal women. The Métis fulfilled an

162 important role as trappers, interpreters, hunters, and traders and provided the necessary food to frontier outposts, because they were familiar with both Aboriginal and European customs. Like many other Aboriginal groups, the Métis helped European settlers to adapt to the harsh living conditions of the new country and taught them about game and plant-based food sources (Metis Nation of Ontario, 2004).

Today, the estimated number of Métis in Canada today varies, ranging from 300,000 to 800,000. Some Métis communities are English-speaking, some Cree-speaking, and some have retained their unique language called Michif. The term Métis is sometimes used more inclusively to describe Aboriginal people of recent mixed ancestry or non- status Indians (i.e. Aboriginal people who did not gain Indian status recognition from the Canadian government or those who lost their status) (OMMA, 2005).

The Canadian government has extinguished Métis collective rights as Aboriginal people. The Métis, therefore, do not receive the benefits from the federal governments which are granted to Status Indians and Inuit. Consequently, they do not receive any individual health or dental benefits from Health Canada. Métis and non-status Indian communities are affected by similar health issues and disparities as First Nations and Inuit communities; however, since they lack access to individual health benefits and comprehensive Aboriginal health programs, their communities are often even more dramatically affected.

Health concerns in First Nations, Métis and Inuit communities Based on many health indicators, research consistently shows that Aboriginal health is, on average, much poorer than that of the general Canadian population (Waldrum et al, 1995; RCAP, 1996; Health Canada, 2002). However, it is important to keep in mind that there is great diversity amongst Aboriginal peoples and there is the danger of stereotyping Aboriginal patients. Many Aboriginal people lead healthy and productive lives. On average, however, health problems and adverse social conditions are much more prevalent in Aboriginal populations.

Most of the data on Aboriginal health is based on statistics from First Nations people living on-reserve. Much less research has been conducted on the health of urban First Nations and Métis people (Kue Yong, 2003). One might assume that Métis communities are often more gravely affected by health and social issues because they do not have access to the same government-funded health and social services as those with Indian status. There are also few broad statistics on Inuit health compared to First Nations health; this data is not routinely collected by Health Canada (Health Canada, 2002). However, a body of academic literature does exist (Kue Yong, 2003).

The Ajunnginig centre (Inuit Centre of NAHO) of the National Aboriginal Health Organization (NAHO) publishes some Inuit health statistics and non-medical determinants of health as priorities for action.

163 Statistics on Inuit health and determinants of health (NAHO Inuit Centre, 2004): Health Indicator Status

Life expectancy 64 years for Inuit compared with average Canadian life expectancy of 78 years. Suicide Inuit youth have the highest suicide rates in Canada. The rate is 79 per 100,000 compared with Canadian average of 13 per 100,000. Tobacco use Smoking rates among Inuit are more than double the Canadian average; 69% of Inuit youth smoke. Housing Crowding is an issue and has a profound impact on mental health, family violence, and respiratory disease. Education Inuit high school graduation rates are 3%.

Rates of Chronic Illnesses and Trauma: In many Aboriginal communities, there are high rates of diabetes (diabetes mellitus type 2), cardiovascular and heart disease (Myers and Farquhar, 2002), obesity, mental illness, injuries/trauma, addictions, and suicide (MacMillan et at, 1996).

Statistics on First Nations Health Conditions Health condition and risk Prevalence in Aboriginal Prevalence in Canadian behaviour populations Population

Smoking in adults 20 years and 57.6% 26.9% older + Obesity in adults over 18 35.4 % 17.4 % (BMI < 30) + Self reported diabetes, all types 14.7% 4.7% in adults 20 years and older + Self reported heart problems in 44% 18% male adults over 65 Self reported hypertension in 49% 23% male adults over 65 Legend: + based on data provided by NAHO, First Nations Regional Health Survey 2002/2003 (NAHO, 2004) * based on data provided by First Nations and Inuit Regional Health Survey 1998 (First Nations and Inuit Regional Longitudinal Health Survey Steering Committee, 1998)

Child-related health issues Risk factors associated with adverse pregnancy outcome have been found to be more common among Aboriginal than among non-Aboriginal women (Wenman et al, 2004). In a study of northern Ontario Aboriginal women, the gestational diabetes prevalence rate was 8.4%, the highest reported in Canada (Harris et al, 1997).

Often, Aboriginal people feel that there is excessive policing by the Children’s Aid Society. This can make parents hesitant to seek help from health care providers, especially for mental health issues or addictions.

There is a higher incidence of infectious disease in Aboriginal children. A study of Aboriginal children under five years found high rates of respiratory tract infections, skin conditions, and otitis media (Harris et al, 1998). Early childhood caries is also an important area of concern (Peressini et al, 2004). In the Sioux Lookout Zone, for

164 example, 75% of children under 5 have had a general anaesthetic for dental work (Chase, 2005).

Children’s immunizations may not be up-to-date in communities that lack access to health care providers. In these communities, speech and hearing tests, and pre- and postnatal checks are often lacking. Store-bought healthy foods are often not affordable for children and pregnant mothers in northern communities. However healthy traditional or country foods (Inuit term for traditional foods), including game and fish, are still available in many communities where traditional food sources and hunting practices have persisted. Environmental contaminants, such as mercury and PCB’s have affected game and fish in some regions, it is important that health care providers have current data for their patients geographic area.

In some communities excessive alcohol use is a problem, and high rates of Fetal Alcohol Spectrum Disorder are observed. However, this is not true for most Aboriginal communities (Square, 1997; Robinson et al, 1987; Asante and Nelms-Mtzke, 1985).

In the First Nations and Inuit Regional Health Survey, parents reported that 17% of children had behavioural or emotional problems in the past six months (First Nations and Inuit Regional Longitudinal Health Survey Steering Committee, 1998). The same survey reported the following disorders for children of all ages: ear problems (15%); allergies (13%); asthma (12%); bronchitis (7%); and overweight problems (7%). Parents also noted psychological (3%), heart (2%), and kidney (2%) problems. About 5% of parents reported that their children had health problems other than those listed.

Statistics on First Nations Child Health Conditions Health indicator Prevalence in Aboriginal Prevalence in Canadian populations Population Low birth weight * 6 % 5.6 % (<2,500 grams) High birth weight * 22% 12.2% (>4,000 grams) Percentage of children under age 54% 75% 2 who were breastfed + Non-insulin-dependent diabetes 2.5/1000 (Sioux Lookout unknown mellitus in children between 7 Zone) and 15 years of age + Injuries resulting in death of 63/100,000 17/100,000 infant + Injuries resulting in death of 83/100,000 15/100,000 preschooler + Legend: * based on data provided by Health Canada, First Nations and Inuit Health Branch, 2002 (Health Canada, 2002) + based on data and literature review provided by First Nations and Inuit Regional Health Survey 1998 (First Nations and Inuit Regional Longitudinal Health Survey Steering Committee, 1998)

While these statistics are alarming, it is important to note that there is a positive side as well; more than 80% of all parents rated the overall health of their children as either “very good” or “excellent.”

165 Other health related issues Custom Adoption (a form of adoption specific to Aboriginal Peoples) This is a traditional form of adoption in native communities which has been revitalized, and recognized legally in some provinces of Canada since 1995. It acknowledges the importance of raising Aboriginal children within their cultural communities, and the role played by the whole community in the raising of children. This process also eliminates the cost of a legal consultation to adopt a child.

Custom Adoption, an inherent aboriginal right, involves a private adoption, arranged between two families. In most cases, a custom adoption is made as a family choice, rather than via foster care. It is overseen by the Elders and/or the community. This allows for families to choose an adoptive family for their children, and to keep in touch with the children. The community validates the role of both the biological and the adoptive parents.

There are traditional custom adoptive ceremonies within some communities, which must be followed to legalize the custom adoption process. The legal requirements vary in different provinces and territories. Child Welfare is under Provincial Jurisdiction.

Custom adoption is not legally recognized by the Ontario courts. Families will sometimes approach a judge in the federal system to validate the custom adoption as a cultural right (the federal government recognizes this right all through Canada). It is helpful for the family to obtain a witnessed letter from that judge to present when difficulties may arise with obtaining consents for health care and education, which are provincially administered.

For more information on Custom Adoption, see:

1. Aboriginal Custom Adoption Recognition Act (NWT) 1995 http://www.vscouncil.ca/pdf/VitalEng2-1.pdf

2. INAC Gathering Strength, Chapter 2 The Family http://www.ainc-inac.gc.ca/ch/rcap/sg/si4_e.html

3. Adoption Council of Canada glossary of terms http://www.adoption.ca/news/041231gloss.htm

4. Adoption Council of Canada summary of Custom Adoption http://www.adoption.ca/news/031001ytsa.htm

Assessment tools Assessment tools are most frequently standardized to mainstream reference populations and there may be certain limitations to their application to Aboriginal populations. Growth studies have shown that First Nations and Inuit children tend to be heavier at birth than other populations (CPS, 2004). The Canadian Paediatric Society states that growth patterns vary between ethnic groups, however they do not advocate for the development of special growth charts for different ethnic groups. Rather, they suggest that physicians should monitor measurements over time and focus on early interventions for obesity.

166 Inappropriate prescription medication Statistics in Alberta show that central nervous system agents are the most commonly prescribed class of drugs to First Nations patients. Codeine, containing analgesics and benzodiazepines account for the majority of these medications. Physicians prescribe six times more benzodiazepines to registered First Nations patients; why these drugs are prescribed at such a high rate is not known. Dr Lindsay Crowshoe, an Aboriginal family physician and faculty member at the University of Calgary with experience in this area, believes that “Aboriginal patients request benzodiazepines for situational anxiety arising from chronic stress and unresolved crises. Physicians need to be aware that benzodiazepines have a substantial adverse profile, particularly in the vulnerable Aboriginal population, and that the underlying causes of stress and crises also need to be addressed” (Crowshoe, 2003).

Inappropriate prescription medication is a significant problem among some Aboriginal populations. Many access these medications from a prescribing physician (Wardman et al, 2002). Also, some communities struggle with the issue of people abusing over-the- counter medications containing codeine. Easy access to prescription drug use is often related to suicide in Aboriginal people (Crowshoe, 2003).

Determinants of health Many Aboriginal communities have significantly higher rates of poverty, unemployment, housing issues, and lack of access to specialized and other health care services (NAHO, 2002). It is important to consider these determinants of health when physicians provide services to Aboriginal people.

First Nations statistics on health determinants and household conditions Health determinants and First Nations populations Canadian Population household conditions High school completion * 63% 79%

Completion of a university 3% 14% degree * Employment rates* 43% 62%

Household overcrowding + 24.6% 1%

Proportion of homes that require 32.9% 8.2% major repair + Proportion of individuals without 17.7% 3% access to a telephone +

Legend: * based on data provided by Health Canada, First Nations and Inuit Health Branch, 2002 (Health Canada, 2002) + based on data provided by NAHO, First Nations Regional Health Survey 2002/2003 (NAHO, 2002)

In addition, 32% of participants in the Regional Health Survey (RHS) reported that they did not have safe drinking water. The same survey found access to home care services to be a problem for 74% of people who are in need of these services. Older adults are likely to have more unmet home care needs. Mold and mildew affected 43.6% of First Nations homes in 2002.

167 The Inter-generational Impact of the Residential School System The federal government began the development and administration of residential schools as early as 1874. The residential school system was originally designed to assimilate First Nations people and culture but this system also had a devastating impact on Métis and Inuit people. A recent Aboriginal health study states:

The long term consequences of these schools designed to ‘Christianize and civilize’ have been, in sum, disastrous. For as long as five generations in some areas of Canada, children were removed from their homes, families, culture and language to be immersed far away for long periods in what has been described as a ‘cultural commando course’. At the schools children’s long hair was cut off and school uniforms issued, they were forbidden to speak their own language and forced to live by strict rules which prevented any contact with siblings or children of the opposite sex, in short, many of these children endured long years of isolation and loneliness. (First Nations and Inuit Regional Longitudinal Health Survey Steering Committee, 1998)

The Residential Schools System exposed generations of Aboriginal people to physical, mental, and sexual abuse and resulted in weakened family ties, a weakening of parenting skills, and a loss of culture and language. Traditional foods were, in most instances, replaced by inexpensive low quality institutional foods which were high in carbohydrates and fats (Hopkins et al, 1995). The conditions that many children experienced, extreme stress caused by abuse and harsh living conditions combined with low quality nutrition, led to long-term health and mental health problems for many students. Addictions are one of the coping strategies some people have used to deal with these traumas (Brave Heart and DeBruyn, 1998).

Most residential schools were closed by the mid-1970s; the last school in Canada was closed in 1996. In 1997, the Government of Canada acknowledged its role in the development and administration of residential schools and apologized to Aboriginal people who had experienced physical and sexual abuse at Indian Residential Schools (Indian Residential Schools Resolution Canada, 2005a).

According to estimates by Statistics Canada, there at least 85,975 Aboriginal people alive today who once attended Indian residential schools. However, many more people were affected by the inter-generational impact of the residential schools. As young adults came from the schools back to their communities, a significant portion brought with them what they had learned at school: unhealthy and abusive behaviours, and bullying. Isolation from their parents often had a negative impact on the development of their nurturing and parenting skills; this, in turn, negatively affected the way some residential school survivors parented their children and grandchildren.

168 Proportion of First Nations people who attended residential school (based on statistics from the First Nations Regional Longitudinal Health Survey, 2002-03) Age group Percent

< 30 5.6%

30-39 11.2%

40-49 24.7%

50-59 44.2%

60+ 42.4%

All ages combined 19.3%

First Nations Residential School Issues When [the nun] used to strap me ... I knew I was going to get five or ten straps on each hand and I knew it was going to draw blood...She’d even take me and shake my head and say, “the devil is in you so strong. How am I going to beat the devil out of you?” She’d put me in a dark place and tell me to stay there. First Nations Residential school survivor (Haig-Brown, 1988)

In the most recent First Nations Regional Longitudinal Health Survey (RHS) of 2002-03, nearly half (48.3%) of the survey participants who attended residential schools indicated that their health and well-being were negatively affected by their attendance; older adults reported more negative effects (NAHO, 2002).

Among the negative experiences were: many forms of child abuse, including harsh discipline, verbal, emotional, physical and sexual abuse, and witness to abuse; social exclusion and forced assimilation, including isolation from family and separation from First Nation communities; loss of language and traditional religion/spirituality; and loss of cultural identity. Many residential school students also experienced bullying from other students, poor education, lack of food and proper clothing, and other harsh living conditions. The Royal Commission on Aboriginal Peoples (RCAP) report describes the multigenerational community impact of the residential school system:

The impact of the system was felt not only by the children who attended schools but by the families and communities that were deprived of their children and had to deal subsequently with children who returned damaged from the schools. In that sense, communities, parents and, indeed, children later born to former students of the residential schools were all ‘enrolled’ (RCAP, 1996).

A community leader of a Northern Ontario community describes the modern day legacy of the residential school system:

Social maladjustment, abuse of self and others and family breakdown are some of the symptoms prevalent among First Nation Babyboomers. The 'Graduates' of the 'Ste Anne's Residential School' era are now trying and often failing to come to grips with life as adults after being raised as children in an atmosphere of fear, loneliness and loathing (RCAP, 1996).

169 Inuit Residential School Issues: Inuit communities had a similar residential school experience as First Nations communities:

Before I went to residential school I had my language, which is Inuktituk. My Inuktituk language at the age of nine was very, very good. I was able to speak to my grandparents, understand what they had to say to me, and in turn I could speak the language very good. Today, I can’t say the same. But during the school years in Inuvik, in Stringer Hall, if I spoke my language, I got slapped in the mouth. Inuit Residential school survivor (AHF, 2003)

The Department of Indian Affairs began allocating money toward mission schools for Inuit children in 1925. Forty years later, there were 33 schools in operation in the Northwest Territories and Arctic Quebec. Children as young as five years old were removed from their families in out-post or isolated communities and brought to the residential school locations; children subsequently lost all or most contact with their families for 10 months of the year. Most residential schools for Inuit children were day schools where all academic aspects were under government control; however, students lived in residential hostels managed by churches. As in the case of First Nations people, residential schools led to loss of family and community ties, as well as a loss of language and culture. However, for Inuit children, there was a significant added cost in their loss of affinity for traditional “country food” such as raw meat (AHF, 2003).

When I got back home to my home community of Cambridge Bay, the food that I saw, the food that I tried, I couldn’t eat. It was revolting to see people eating wild meat raw. Inuit Residential school survivor (AHF, 2003)

Similar to First Nations children, many Inuit children experienced various forms of child abuse in these residential schools. One Inuit survivor remembers instances of child abuse like the following interaction between a male teacher and a female child:

So anyway, he’s looking around, and I guess the first thing he saw was this blackboard eraser. He grabbed it and threw it at her, and she didn’t move or wince, but I saw blood trickling down her hand. The eraser had hit one of her knuckles. She didn’t even cry; she just sat there frozen in her chair. Inuit Residential school survivor (AHF, 2003)

Métis Residential School Issues It is estimated that approximately 9% of Aboriginal children who attended residential schools were Métis. While Métis children were exposed to the same abuse as First Nations and Inuit children, there is evidence that they were treated as second class students when the government abolished Métis rights. While this stopped the government from funding Métis children’s attendance at residential schools, many churches still actively admitted Métis children (AHF, 2003).

170 Wisdom of Elders Traditionally, Elders were respected for their wisdom and knowledge, which was often shared through story-telling. Today, Elders are recognized by their communities as carriers of special knowledge. Elders in Aboriginal cultures are not always old or elderly, and not all old people are traditional Elders. Although Elders are recognized by Aboriginal communities, it can be very difficult for cultural outsiders to know if a person is truly an Elder.

Physical health is connected to our emotional, spiritual and mental health. My grandmother used to tell us to look after our bodies because it was home for our souls. She knew it was all connected.” Suzanne Rochon Burnett, Métis, 2004 National Aboriginal Achievement Award Winner (NAHO Metis Centre, 2004)

In some situations, Aboriginal patients can benefit mentally and emotionally from talking with an Elder. Physicians can refer patients to Aboriginal health centres, Indian Friendship Centres or Inuit Community Centres for referrals to Elders.

The Patient-doctor relationship The clinical consultation is an interaction which is influenced by differentials in power; this differential can be based on social class, ethnicity, age, and gender (Helman, 1984). To minimize the manifestation of power differentials, physicians can focus on body language and position of desk. Covert indicators of power are also pervasive, as health care workers control much of the encounter, including the decision if a translator is required. Physicians can focus on using a communication style that indicates equality (Kelly, 2002).

Fundamental to good care is effective patient-doctor communication, however professional, cultural and language barriers can impede communication. This is particularly true with Aboriginal patients. A study of indigenous patients showed that miscommunication with physicians is pervasive and a fundamental change to the care of indigenous patients is required. For example, to be polite, patients routinely gave responses that they believed healthcare workers wanted to hear (Cass et al, 2002). Training in cross cultural communication, an understanding of the patients socio economic and family context, and their illness experience are all necessary to improve communication.

Medicine wheel approach to Health and Well-being The concept of holism in health and well-being has been shared among Aboriginal Nations and communities for thousands of years. This encompasses and promotes balance in physical, mental, emotional, and spiritual health. This concept of holistic health has been recently rediscovered by Western medical institutions. The World Health Organization, for example, defines health as "a state of complete physical, mental and social well-being, not merely the absence of disease" (WHO, 1977).

The medicine wheel is a teaching tool used in First Nations culture to explain the interrelatedness and holism of many concepts, such as the life stages and health and wellness. Figure 4 provides a diagram of the medicine wheel demonstrating the concept of holistic health.

171 Holistic Health Mental

Physical Spiritual

Emotional Figure 4: A medicine wheel

Dr. Montour, an Aboriginal physician, believes that the medicine wheel can be used successfully in clinical consultations with his patients:

The Medicine Wheel concept from Native American culture provides a model for who we are as individuals: We have an intellectual self, a spiritual self, an emotional self, and a physical self. Strength and balance in all quadrants of the Medicine Wheel can produce a strong, positive sense of well-being, whereas imbalance in one or more quadrants can cause symptoms of illness. Addressing issues of imbalance can potentially diminish your patient's symptoms and enrich their quality of life. (Montour, 1996)

The basic concept of the medicine wheel is simple: it embodies ideas of the interrelatedness of the human spirit, mind and body. A deeper understanding of the medicine wheel however should be gained through participation in cultural awareness opportunities.

Traditional Aboriginal Medicine

We, as Native people, have been using these remedies for thousands of years and some of us extend our life with that. Aboriginal Elder, North Central Ontario Region (RCAP, 1996)

172 North American Aboriginal people developed an indigenous health system, based on an oral tradition, thousands of years before contact with non-Aboriginal people. Traditional Aboriginal medicine was a vibrant and complex health care system, practiced in all Aboriginal communities. Due to the effects of colonization and forced assimilation, traditional knowledge has been eroded in many communities. However, some have been able to keep this knowledge alive by taking traditional Aboriginal medicine knowledge “underground.” Today, most Aboriginal communities are experiencing a resurgence of traditional Aboriginal knowledge and beliefs.

The use of traditional healing is an individual choice for some Aboriginal people. It is important to understand that each community and each individual is unique with respect to their expectations, experience, and level of comfort with traditional Aboriginal medicine. Physicians should be aware that some of their clients practice medical pluralism and should be open to the fact that some of their Aboriginal patients are consulting traditional healers, as well as physicians. Patients may not be comfortable sharing this information with their physicians, unless asked directly about it, for fear of a judgemental reaction.

Physicians should become familiar with some of the concepts of traditional medicine so that they might understand how their patients, and their treatment strategies, may be affected. Traditional medicine has strong spiritual and mental health components; patients may also take herbal medicines. In a modern context, where patients are also seeking physician services, there is the potential for drug interactions. Physicians can respectfully inquire about herbal medicine taken by their clients but they may not be able to learn about the composition of the traditional medicines; this is seen by many healers as sacred knowledge.

What can Physicians do to provide high quality care to Aboriginal people? 1. Culturally competent care “requires the acquisition of knowledge, development of skills, and demonstration of behaviours and attitudes that are appropriate to care for patients and families.” To improve skills related to culturally competent care, physicians can use self-reflection to increase their effectiveness with Aboriginal patients. Continued monitoring and documentation of measurable outcomes provide evidence for the effectiveness of culturally competent care (Committee on Pediatric Workforce, 2004).

2. Learning about Aboriginal health issues and diversity through the available literature is a good first step. Learning about commonly occurring normal variations is also important. Mongolian spots for example are normal Aboriginal infant colorations that can be mistaken for bruising by health professionals. Additional web-based resources are provided at the end of this chapter.

3. Physicians should access cultural awareness training whenever possible and be aware of that there are cultural differences between different Aboriginal groups.

4. Actual participation in community events also provides valuable experiential opportunities for learning about Aboriginal people. Physicians who are interested in learning more about Aboriginal culture have a variety of options. For example, they can contact their local Indian Friendship Centres, Inuit Community Centres or First Nations health centres to enquire if there are community or cultural events that they could attend.

173 5. It is important that physicians are comfortable asking questions of Aboriginal patients in order to avoid stereotyping. For example, some Aboriginal people are actively involved in their culture, some are not. Some are in the process of learning it. Involvement in cultural activities has been demonstrated to be a protective factor for mental illnesses. Physicians can ask their clients how involved they are in their culture.

6. For some Aboriginal people, especially elders, accessing care outside of their communities is very distressing. Some elders believe that they are leaving their communities, or are taken away, to die.

7. The geographic location of a patient’s home community has a dramatic impact on access to services. Many health and social services are not available in northern communities; the same can be true for adequate housing, clean water, or access to nutritious foods. Isolated communities are often most severely affected.

8. Physicians can become familiar with the health care system in their patients’ communities. Collaborating with community-based Aboriginal health care providers and paraprofessionals, particularly in First Nations communities, can significantly improve follow-up care and health outcomes for Aboriginal patients (Minore and Boone, 2002).

9. It is important to be aware of patients’ access to local health services, and effective discharge planning is imperative.

10. Health Canada provides an updated list of non-insured health benefits for which First Nations and Inuit people are eligible. Physicians can check this website to ensure that they are prescribing medication covered under this health plan (www.hc-sc.gc.ca/fnihb-dgspni/fnihb/nihb/).

11. Physicians must be aware of potential translation issues, especially when this service is provided by a person who is not trained in medical translation or by a family member. It is important to stress, that just like the English language, Aboriginal languages show regional variations, called dialects. Speakers of different dialects will have some difficulties understanding each other.

12. Physicians should be aware that patients from isolated communities have to take up temporary residence in urban centres to access treatment; this temporary residence is not the patients true home.

13. There are common health literacy issues, especially among Elders. Out of politeness Elders will often not ask for clarification, even if they do not understand a physician’s recommendations; this is often true for younger people as well. The following is a good example of the common miscommunication:

In interviews with BC Cancer Agency researchers, Aboriginal women mentioned that they were not comfortable talking about Pap smears, even among family and friends. Many women reported having been screened because of pregnancy, and some confused the test with testing for sexually transmitted diseases, while others thought it was necessary for obtaining oral contraceptives. On the whole,

174 they were embarrassed and uncomfortable both psychologically and physically, particularly with male physicians. Clearly, cultural factors must be taken into account in any program to promote cancer screening among Aboriginal people (First Nations and Inuit Regional Longitudinal Health Survey Steering Committee, 1998).

14. Most Aboriginal people have a holistic understanding of health, and think of physical, mental, emotional, and spiritual heath as equally important. Physicians can ensure that treatments address all of these aspects of health.

15. Physicians can help their patients by encouraging an open dialogue with those who use traditional Aboriginal medicine as well as physician care.

16. Physicians can show an interest in and support their patients’ cultural practices. For example, some Aboriginal people may request to take home the umbilical cord and/or the placenta after giving birth. Flexibility in hospital procedures to allow for cultural practices is important in this case as well.

Conclusion Working in Aboriginal communities can be a demanding job but is for most quite fulfilling. Physicians working in Aboriginal communities often describe a journey of self- examination and professional and personal growth (Kelly, 2002). There are many things that the Aboriginal culture can share with the broader community, including a medicine wheel approach to health care, the concept of balance in one’s life to prevent illness, and a holistic understanding of health; this understanding is currently being rediscovered by health organizations worldwide.

By learning to provide culturally competent care to Aboriginal patients, Western health care practitioners will become more responsive to the dynamics of culture in ethical decision-making for members of many ethno-cultural communities (Ellerby, 2000).

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179 Section 7: Adoption

Primary Health Care and Adoption

Author: Patricia Fenton

Introduction One in five Canadians has a personal connection to adoption. It is, therefore, very likely that a primary health care provider will encounter adoption related questions in his/her practice, and members of the adoption community will be part of the patient population. The purpose of this chapter is to provide adoption information, suggestions and resources to help physicians and other health-care professionals with their role in adoption.

Adoption Today Five types of adoption in Ontario 1. public or child welfare adoptions through a Children’s Aid Society – children of all ages 2. private adoptions through a licensed agency or individual – mostly newborns 3. international adoptions through a licensed, non-profit agency – mostly children 3 and under 4. step-parent or relative adoptions through the Court – children of all ages 5. custom adoption or customary care as practiced within Aboriginal communities

Adoption is a social, emotional and legal process through which a child becomes a part of a new family. It is a service to children and is intended, first and foremost, to serve the child’s best interests. The experience of adoption has many dimensions and is a lifelong process for all the individuals involved. It can be a mixture of joy and pain, loss and gain. Although each adoption is unique and has happy and positive aspects, adoption is a process that is built on loss. The child has lost a primary connection with his/her birth family; the birth parents have lost their child; and for adopting parents (the majority of whom come to adoption because of infertility), their infertility has meant a loss of a dream child, their genetic continuity and their fertility. Consequently, issues of loss and grief are emotional realities shared by adoptees and both of their families. In spite of this, adoption has a high success rate.

In recent years, adoption has undergone significant changes. Practices and attitudes, as well as our understanding of adoption, have changed and improved. Adoption, formerly a process surrounded by secrecy for all parties, has begun to move into a more open realm. Most adoption experts view this change as a healthier approach for the child and for the adults involved. It is expected, for example, that adoptive parents will share the fact of the adoption with their child and spend time talking about adoption with their child.

Some adoptions are open, meaning that there is some degree of contact and communication, sometimes face-to-face contact, between the child’s birth family and the

180 adoptive family. Photos and letters may be exchanged between the two families or, in the case of fully open adoptions, there may be regular meetings and an ongoing relationship. There are degrees of openness that range from anonymous situations with no background information (as with adoptions from China) to those where one meeting takes place around the time of placement followed by photos and letters at various intervals but no other contact, to occasional contact from members of the child’s extended family, to fully open where the parties all know each other and have ongoing contact. In the more open adoptions it is much easier to obtain answers to the questions that adoptees normally experience about the adoption (Why did it happen?), their background (Who are my birth parents?) and their identity (Who am I? Who do I look like?).

Unfortunately, Ontario legislation governing adoption records and access to information has not kept pace with these more open attitudes and practice, so adult adoptees and their birth parents involved in adoptions in the past are by law hampered from direct access to information about each other but can apply to the Adoption Disclosure Register to register their interest and willingness to re-connect.

Adoption used to involve mostly newborn infants. Nowadays, while some of the children being adopted are newborn, children of all ages are being adopted in Ontario, including some with special needs. Adopting toddlers and older children is very different from adopting a newborn infant. They have experienced a great deal, and carry those experiences with them. Parents who adopt them must be mature, flexible and understanding of these children’s needs and how to meet them. They may also need to develop certain special skills and awareness, so the children can feel comfortable and more easily integrate into their new families.

A further change has been the rise in international adoptions. Since the early 1990s there has been an increase in the number of children adopted from abroad by Ontario families. Many of these children come from orphanages and poverty conditions. These children are deemed to be children with special needs as they experience the effects of institutionalization as well as other conditions in their homeland that may impact their health and development.

The adoption application process is a rigorous one for adopting parents. The adoption assessment or “homestudy” involves a thorough review of the applicants, their health status, their circumstances and readiness to adopt a child. In-depth interviews, letters of reference, medical and financial statements, criminal record checks and adoption training are part of the application process.

Although at one time it was possible for physicians to arrange adoptions, this is no longer legal. It is possible for physicians to help to connect adoptive applicants and prospective birth parents (private adoption), but all adoptions in Ontario now must be arranged through an agency or individual licensed by the Ontario government. The only exceptions to this would be a step-parent adoption or the adoption of an Ontario child by a close relative, both of which are Court applications.

Roles for Primary Health Care Providers Family physicians and other health care professionals may be asked to play a role in a variety of adoption situations.

181 1. A woman facing an unplanned pregnancy may request a referral from her doctor for information and advice about adoption as an option for her baby. 2. Women and couples experiencing infertility may also request their doctor’s advice about adoption, or information about how to go about applying to adopt. Further into the application process, they may also ask health care professionals if they can help them to find a baby. 3. Adoptive applicants are expected to have their family doctor conduct a medical examination and complete a report on their health as part of the adoption preparation and assessment (“the home study”). 4. Adoptive parents will often need medical advice and input into their decision- making when a proposal about a child available for adoption is presented to them. 5. Adoptive parents, especially in the case of an international adoption, will need medical attention for their child, including tests and immunizations. Routine developmental surveillance should occur and prompt referrals to developmental services made if developmental problems are suspected. 6. Adoptees and birth parents who are involved in an adoption search may request their health care provider’s support in requesting a search if there are mental or physical health issues that make contact with family members necessary or advisable. 7. Adoptive parents may present with questions related to their child’s physical or emotional health. 8. Individuals and couples may inquire about support services available to adoption community members.

Unplanned Pregnancy and the Adoption Option Adoption may be an option in the case of an unplanned pregnancy. While a woman who unexpectedly finds herself pregnant may choose an abortion, there are many who will decide to parent. For some, adoption may be the desired option. If she is contemplating an adoption, it is important for her and her partner, if he is involved, to be referred to an agency or individual counsellor where she can receive assistance and counselling in exploring the best plan for her baby. She has the choice of placing her child through the Children’s Aid Society or through private adoption.

A document entitled “Are You Thinking of Adoption for Your Child” is available at: www.children.gov.on.ca/CS/en/programs/Adoption/Publications/thinkingOfAdoption.htm This explains the process and options. In the case of private adoption, the woman and her partner, if involved, are key decision-makers in planning for the baby. They can choose the family and meet with the adoptive parents. Services to parents who are placing a child for adoption are free of charge. A list of private adoption agencies and licensees is available at: www.children.gov.on.ca/CS/en/programs/Adoption/Publications/CFSALicenseesAgencies.htm Use this if you are referring for a private adoption.

If the woman wishes to work through her local Children’s Aid Society, see: www.oacas.org/resources/members.htm for local addresses and phone numbers. No adoption can occur in Ontario without an application for adoption through a Children’s Aid Society, or through a licensed agency or individual and, in the case of private or international adoption, the approval of the Ontario Ministry of Children & Youth services.

182 Under Ontario adoption practice, the pregnant woman must be given the opportunity to review her options before proceeding with an adoption plan. By referring her to a licensee or counsellor, this counselling can take place. If she decides on an adoption, she must be given the opportunity to select a family for her child. As a medical practitioner, you may have received profiles from prospective adoptive parents that can be shared with the pregnant mother, but she must be given a choice of several families before deciding on the family that will raise her child. So, even though she may have reviewed the profile that has been presented by her health care provider, she must still have an opportunity to review others through the services of a licensee.

Infertility and Adoption It is estimated that as many as one in six couples of childbearing age experiences issues around infertility. Discovering that one has fertility issues is a life crisis of significant proportions for many couples and individuals. This has resulted in a lot of interest in adoption as a way to build a family. With all the sophisticated reproductive technologies available, couples may come to consider adoption after a long series of treatments. Couples may benefit from counselling related to their infertility. A few counsellors now specialize in this area. Health care providers may be asked their opinion about adoption as an option or may be asked how to find out about adoption. The Adoption Resource Centre, run by the Adoption Council of Ontario, 416 482 0021, offers telephone assistance and seminars that can help prospective adoptive parents understand the process and options. The website www.adoptontario.ca is specifically designed as the internet hub for Ontario specific adoption information. Lists of adoption practitioners and agencies are available at www.children.gov.on.ca.

Domestic Adoption Public adoption (through the Children’s Aid Society) Most of the children placed through the Children’s Aid Society are Crown wards who have been living in foster care. They may have experienced neglect, abuse, or other family circumstances that have prevented them from remaining with their original family. These children range from infants to teenagers and may also be part of a sibling group. One can find out more about some of the children awaiting adoptive placement by visiting www.adoptontario.ca and www.canadaswaitingkids.ca.

Private adoption Most of the children placed through the private system are newborns or young children. All such adoptions must be arranged through a licensed agency or individual and must have the approval of the Ontario Ministry of Children & Youth Services. Applicants must hire an approved adoption practitioner to do an adoption homestudy. For a list of approved adoption practitioners approved to do homestudies, visit www.children.gov.on.ca/

Adoption medicals: As part of the assessment process, the adoption practitioner is expected to obtain a medical report from the applicants’ physician. It is expected that the physician will review previous medical records if the applicant has been a patient for less than two years. The physician is asked to provide an opinion and written statements regarding the applicants’ readiness and suitability to adopt and to identify whether there are any health factors that may interfere with parenting ability.

183 International Adoption Approximately half of all adoptions in Ontario are international adoptions with the most popular country being China. Currently Ontario policy supports the adoption of children up to 3 yrs of age, and single children only, not siblings. The children available in international adoption are usually coming from orphanages and are likely to be close to one year of age and over. Because many have been in orphanages since birth, they may be undernourished, and may have developmental delays or other conditions that require medical attention.

In addition to the adoption medical that is required of adoptive applicants for the adoption homestudy, some countries (e.g. Russia and China), have additional medical forms and prescribed tests that are required of the applicants. These forms will be provided by the agency through the applicant.

Prior to an adoption, medical practitioners may be asked to review a child proposal and give an opinion based on a written report, a few photos or possibly a video of the child. The information available may not be accurate or complete. In the case of China, there may be some lab test results and a photo on which to provide comments. Hepatitis, rickets and anemia are some of the medical conditions to watch for. In the case of Russia, there may be a brief video of the child along with a written medical report. Russian medical terminology is different and may seem alarming as there are frequent references to conditions such as perinatal encephalopathy, intracranial hypertension, psychomotor retardation and oligophrenia. Head circumference measurements and charting of the child’s height and weight can help to identify developmental concerns. Giardia, scabies or parasites may be found in some of the children. For an outline of medical testing recommended in international adoption, see http://www.fwcc.org/pediatricexam.html. Dr. Eric Downing, a Canadian physician working in Russia, provides insights into the Russian medicals in his article, Russian Medical Reports: Terminology. See http://www.russianadoption.org/adoptionfaq.htm#PET

Once a child has arrived and is in a consistent, nurturing family environment, s/he may blossom and do very well. Developmental assessments, interventions and monitoring may be important to optimize their adjustment and development. They may not have had consistent caregiving or nurturing and may continue to experience issues related to attachment that impact their adjustment into their family. Screening for diseases that are prevalent in the child’s country of origin is important. Families may need additional support and assistance in understanding child development and implementing parenting techniques that can enhance their child’s adjustment and attachment within the family.

184 Tests recommended for internationally adopted children  CBC with differential and platelets (RDW, Retics)  Glucose-6-phosphate dehydrogenase  Urinalysis with microscopic examination  Stools O&P X4 with Giardia antigen and Cryptosporidia smear (acid fast)  Stool C & S X1 (Salmonella, Shigella, Campylobacter, Yersinia)  Liver enzymes (SGOT, SGPT)  PPD (Mantoux test for tuberculosis)  Rickets screen (Alkaline phosphatase, Calcium, Phosphorus)  Lead levels  Syphilis serology (RPR, FTA-ABS)  Hepatitis B screening  HIV serology  Thyroid function tests (Free T4, TSH)  Metabolic screen (PKU, Galactokinase, Biotinidase, etc.)  Bone age x-rays (as needed)  Neurologic and ophthalmologic specialty exams based on physical exam  Hearing and vision evaluations (especially in premature infants)  Developmental evaluation Source: http://cdnclinicadoptedchildren.homestead.com/CdnMedClinic.html

Adoption Medicine Specialists In the USA, adoption medicine has been recognized as a specialty, and has been included in the Red Book. There are several physicians in the USA who provide consultation on child proposals in international adoptions, for example, Dr. Dana Johnson in Minnesota, Dr. Aronson in New York, Dr. Deborah Borchers in Ohio, and Dr. Jerri Ann Jenista in Michigan. Many adoptive applicants have used these services.

In Ontario, there is a clinic called the Canadian Clinic for Adopted Children, run by Dr. Angelo Simone, a pediatrician and endocrinologist, in Mississauga. For details about this clinic, please go to: http://cdnclinicadoptedchildren.homestead.com/CdnMedClinic.html. Pre- and post-adoption assessments are provided there. The International Adoption Clinic at Children’s Hospital of Eastern Ontario is another useful resource.

Gay & Lesbian Adoption Gays and lesbians are eligible to adopt and an increasing number of same sex couples are adopting today. There are no identified international programs that will accept same sex applicants, so domestic adoption is the main option. Most adoptions by gays and lesbians have been through the Children’s Aid Societies, but there are some couples who have been selected by birth families for private adoption.

Adoption Search & Reunion Current Ontario legislation does not allow free access to adoption records for adoptees or their birth or adoptive families. The Adoption Disclosure Register (ADR), operated by the Ontario government, has been established to help adoptees and birth relatives with searches and reunions. Adoptees and birth relatives are entitled to non-identifying information about each other. Adoptees, 18 and over, can apply to have assistance to locate their birth parents but both parties need to give consent to a meeting or an exchange of identifying information. Many adoptees in Ontario have been frustrated by

185 not having easy access to medical and personal background information. Birth parents who want to find their child have to wait for the adopted child to register since the ADR conducts searches only on behalf of adoptees.

Health care providers may be asked to support an application by an adopted person or by birth relatives for a search and reunion where there are health issues that may have a life threatening impact on the other party, or where a reunion may help to address presenting mental or physical health issues. A form is provided for this purpose by the Ontario Ministry of Community & Social Services.

Support Services Health care providers may be asked about adoption-related services, support groups, and other supports for adoption community members. The internet website www.adoptontario.ca includes listings of support groups, resources, news and events. The Adoption Resource Centre, operated by the Adoption Council of Ontario, has a helpline that provides information and referral, 416 482 0021, and other supports for adopted persons, birth parents and adoptive families.

Resources Canadian Clinic for Adopted Children http://cdnclinicadoptedchildren.homestead.com/CdnMedClinic.html - 2338 Hurontario Street, Suite 200, Mississauga, Ontario, L5B 1N1 Canada. Tel: 905-848-8303. Fax: 905-848-5727e-mail address: [email protected]

International Adoption Clinic, CHEO - C1 Medical Clinic, Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa K1H 8L1. Charles Hui, M.D., FRCPC, 613-737-7600, X2975, [email protected]. Dr. Hui is a pediatrician and infectious diseases specialist working with children adopted internationally. The International Adoption Clinic opened Nov. 18, 2003, providing initial post-adoption assessment, investigations and referrals to other specialists. It makes recommendations to your family doctor/pediatrician who will be responsible for ongoing follow-up. Services are covered by OHIP. The clinic expects most children will come from Eastern Ontario or Western Quebec and have recently arrived in Canada. Referrals accepted for children who have been in Canada longer where there are medical issues/questions related to international adoption. To be referred for a post-adoption assessment, have your family doctor or pediatrician send a referral note, including all medical and developmental information, to Dr. Hui. The clinic recommends that the referral be made once you know your travel dates so you can arrange for your child to be seen soon after your return to Canada. --Oct 26, 2004 www.familyhelper.net

Guidelines for Interpreting Pre-Adoption Medicals From Russia and Other Countries: Syphilis, Hepatitis B and C and HIV, Recommended Screening Tests and Evaluations http://www.orphandoctor.com/services/assessment/guidelines.html

Medical Testing Recommended for International Adoptees By Deborah A. Borchers, M.D., F.A.A.P. http://www.fwcc.org/pediatricexam.html

Does Size Matter – Or is Bigger Better? An article about head circumference by Dr. Dana Johnson – International Adoption Clinic, U of Minnesota http://www.orphandoctor.com/medical/hc/

186 Adoption information specifically for Ontario residents www.adoptontario.ca

Resources and information on adoption for adoptive applicants www.familyhelper.net

Lists of agencies and approved adoption practitioners, publications such as “Are You Thinking of Adoption for Your Child”, and other adoption related info (look under Adoption) www.children.gov.on.ca

List of Children’s Aid Societies with addresses Adoption Resource Centre, Adoption Council of Ontario, 3216 Yonge St. Unit 2, Toronto, ON, M4N 2L2 - 416 482 0021www.oacas.org/resources/members.htm -, www.adoption.on.ca

Adoption information & referral, support, seminars, resource library. newsletter. [email protected]

187 Section 8: Fathering

Role of Fathers in Child Development: How can physicians promote positive father involvement?

Authors: William J. Watson, MD, FCFP Staff Physician and Assistant Professor, Dept. of Family and Community Medicine, St. Michael’s Hospital and University of Toronto

Ed Bader, MA Associate Professor, Dept. of Family and Community Medicine, University of Toronto Project Coordinator, Focus on Fathers, Catholic Community Services, Richmond Hill, Ontario

Summary Physicians have an important role to play in helping fathers to become aware of their importance in the healthy development of their children. This paper highlights some of that research and ways in which family physicians may assist fathers to be positively involved in their child’s upbringing.

John and Linda’s Case John and Linda come to the office with their 4-week old baby boy for a well baby exam. They also have an 18 month-old daughter. During the course of the exam, you notice that Linda looks quite tired and when asked ”how are things going?”, she bursts into tears. John looks very concerned and mentions quietly to you that Linda has been behaving strangely, unable to sleep and agitated about the how messy the house was.

What are your concerns about this family? How would you help this family?

Discussion: Based on her symptoms of insomnia, agitation and “strange behaviour” according to her husband, Linda likely has postpartum depression and may have postpartum psychosis. Further questioning about delusions, hallucinations, suicidal ideation and thoughts of harming the baby need to be explored to exclude postpartum psychosis. Prescription of medication, urgent psychiatric assessment and possible admission to hospital should be considered if there are concerns, especially severe depression or psychosis. Husband John needs to be informed of the seriousness of her condition and advised about the importance of his involvement and support of Linda. He should also be given some concrete suggestions about how he can help, such as control visitors, assure the mom of your love and support and listen to her concerns, take part in the well baby visits to the doctor. A postpartum support group for fathers should be considered, and encourage mother to go to a support group as well.

188 Hassan and Bindu’s Case Hassan and Bindu have come with their newborn after two weeks for a well baby exam. The baby exam is normal and mother Bindu seems to be doing well. She expresses concern about Hassan’s seeming lack of interest in the baby. He also appears to be unusually quiet and sad. Upon further questioning, Hassan admits that he is having difficulties at the job site, and has had an episode of depression 5 years earlier. He also feels that the taking care of the baby isn’t part of his cultural background.

What do you think is going on in this family? What would your next step be?

Discussion: Hassan appears to have an episode of depression and may require further treatment, i.e. medication and psychotherapy. He should be seen on his own for further psychosocial and psychiatric assessment. Many men see themselves only as provider and protector, but parenting courses for fathers stress how the father can help the child’s intellectual, physical and emotional development in the early years and beyond. The courses are available in some communities in many languages and are culturally sensitive.

Background The role of fathers has changed significantly in the past 50 years. At that time, there was a clear delineation of roles with fathers as providers and protectors, and mothers providing most of the homemaking and child care (Gottman, 1997; Watson et al, 1995).

In the past several generations, fathers have gone from being the primary source of their childrens’ welfare to being, in many cases, superfluous. With high rates of divorce and births to unmarried women, too many children today live without their dads-many kids know their fathers as the guy who was here but left, or the man who is supposed to pay child support, but doesn’t (Gottman, 1997).

Today, with both parents working and under tremendous pressures, there are different stresses, especially financial and lack of free time. A survey of parents reported that 73% of parents reported feeling stressed and worn out following the birth of their first child, but only 55% of parents felt they received enough emotional support (King et al, 1994; Oldershaw, 2002). As a result, fathers expected to take on an increasing role at home, especially in child care and home maintenance.

The transition to fatherhood can be a difficult one, with some fathers having difficulty with the father role, whether because they did not have a good model in their own family, or have other health problems such as mental illness, violence or substance abuse (Watson et al, 1995). There are a significant number of children raised in fatherless families. In addition, many men are psychologically absent from their childrens’ lives possibly because they lack the skills necessary to be good and involved fathers. Some fathers have grown up in fatherless homes themselves and never experienced positive role models. Others have had abusive or inadequate father role models. There is also a dearth of skill-building material directed toward fathers compared to the myriad of informational materials available to mothers. For example, whereas there are literally hundreds of skill-building books available for mothers of newborns, there are very few

189 which address the experience of new fathers. The result of this combination of poor or absent role models for many men, and minimal informational materials written by and directed toward fathers, is that many men lack the knowledge and skills to be engaged fathers.

It has been suggested that men may have gender-specific risk factors for perinatal psychological distress and may manifest distress in ways different from women. One study documented changes in psychological, relationship and lifestyle parameters in a cohort of first time fathers from pregnancy to the end of the first postnatal year. The men exhibited highest symptom levels in pregnancy with general, though small, improvement at 3 months and little change thereafter. Lifestyle variables showed small changes over the first postnatal year. Sexual functioning appeared to deteriorate markedly from pre- pregnancy levels with only minimal recovery by the end of the first year. These men appeared to be ill prepared for the impact of parenthood on their lives, especially in terms of the sexual relationship. The results highlight that the majority of men anticipated return of sexual activity to pre-pregnancy levels; however, this failed to happen. The authors concluded that pregnancy, rather than the postnatal period, would appear to be the most stressful period for men undergoing the transition to parenthood (Condon et al, 2004). This information may point to the need for effective prenatal educational programs aimed at better preparation for the role of fatherhood.

Research on Father Involvement What is the evidence for the importance of the father role in child and family health? Research on father involvement has advanced dramatically in the past 30 years. Research substantiates that fathers' interactions with their children can exert a positive influence on their children's development. Research tells us that fathers can be far more than an “assistant mom”. Fathers typically relate to children differently than mothers do, which means their involvement leads to the development of different competencies, particularly in the area of social relationships. There is now substantial literature that establishes a number of important trends in the way that men approach parenting, and the effects that their involvement has on their child’s development. What is clear from the research is that father involvement has enormous implications for men on their own path of adult development, for their wives and partners in the co-parenting relationship, and, most importantly, for their children in terms of social, emotional and cognitive development (Allen and Daly, 2003).

Cognitive Development Infants of highly involved fathers are more cognitively competent at 6 months and score higher on standardized development scales. By one year, they continue to have higher cognitive functioning, are better problem solvers as toddlers, and have higher IQ’s by age three (Allen and Daly, 2003). School-aged children of involved fathers are also better academic achievers. They are more likely to get A’s, have better quantitative and verbal skills, and have higher grade point averages. Children of involved fathers are more likely to enjoy school, participate in extracurricular activities, and graduate. They are also less likely to fail a grade, have poor attendance, or have behaviour problems at school. In addition, children of involved fathers are more likely to become educationally mobile young adults with higher levels of economic and educational achievement, career success, occupational competency, and psychological well being (Allen and Daly, 2003).

A father’s influence begins at an early age. One researcher found that 5-month old baby boys who have lots of contact with their fathers are more comfortable around adult

190 strangers. The babies vocalized more for the strangers and showed more readiness to be picked up by them than babies who had less involved fathers. Another study showed that one-year old babies cried less when left alone with a stranger if they had more contact with their dads. Many researchers believe that fathers influence their children primarily through play; they spend a higher percentage of their time with their children in playful activities, use different styles of play which may be more physical and exciting than the way mothers interact. Some researchers found that fathers talked less but touched more (Yogman et al, 1995; Brazelton, 1995). The dads were more likely to make rhythmic, tapping noises to get their baby’s attention, also more emotional going from activities that commanded minimal interest to those that got the babies quite excited. Mothers, in contrast, kept their play with their babies on a more even keel. Such differences continue well into childhood with fathers engaging their kids in more rough and tumble activities including lifting, bouncing and tickling. Many psychologists believe that dad’s raucous style of play provides an important avenue for helping children learn about emotions (Allen and Daly, 2003).

Emotional well being and development Infants whose fathers are involved in their care are more likely to be securely attached to them, are better handle strange situations, are more resilient in the face of stressful situations, and are more curious and eager to explore their environment (Allen and Daly, 2003). Father involvement is positively correlated with children experiencing overall life satisfaction, less depression and emotional distress, and fewer expressions of negative emotions such as fear and guilt. Young adults who had nurturing and available fathers while growing up are more likely to score high on measures of self-acceptance, and personal and social adjustment. They also see themselves as dependable, trusting, practical, and friendly, be more likely to succeed in their work, and be mentally healthy. Children of involved fathers are more likely to demonstrate a greater tolerance for stress.

Social development Father involvement is positively correlated with children’s overall social competence, maturity, and capacity for relatedness with others (Allen and Daly, 2003). The strongest predictor of empathic concern in children and adults is high levels of paternal involvement with a child. Children of involved fathers are more likely to have positive peer relations, and be popular and well-liked in their peer group. In addition, they are more likely to have positive sibling interactions, show fewer negative emotional reactions during play with peers, experience less tension in their interactions with other children, and solve conflicts by themselves rather than seeking the teacher’s assistance (Allen and Daly, 2003).

Effects of father absence on child development outcomes Children who live without their fathers are, on average, more likely to have problems in school performance and more likely to experience behaviour problems at school. Boys who live without their fathers consistently score lower on a variety of moral indexes-such as measures of internal moral judgement, guilt following transgressions, acceptance of blame, moral values and rule conformity. Girls who live without their fathers are more likely to cheat, lie, and not feel sorry after misbehaving. Both boys and girls who live without their fathers have a higher incidence of mental health problems such as anxiety, hyperactivity, depression and suicide (Allen and Daly, 2003).

191 Co-parenting relationship The quality of the co-parenting relationship has been direct implications for how involved fathers are, and indirect implications for child development outcomes. As a result, marriage becomes an important context within which to promote and sustain father involvement (Allen and Daly, 2003). Marital quality plays an important role in fathering for the following reasons:  Fathers appear to withdraw from their children when not getting along with their mother (mothers do not show similar withdrawal)  The optimal conditions for father involvement are when a father lives with his children and has a good partnership with the mother.  Although these conditions can be met outside of marriage, cohabiting couples are more susceptible to long term instability.

Some research also indicates that increased father involvement can have positive consequences for the marriage, with increased marital satisfaction and stability in later life (Cowan and Cowan, 1992; Belsky and Kelly, 1994).

When mothers are supportive of their spouse’s parenting (i.e. view them as competent parents, provide encouragement, expect and believe parenting is a joint venture), men are more likely to be involved with, and responsible for their children, place a greater importance on their father role identity, and feel more satisfaction, pleasure, competence, and comfort in their paternal role (Cowan and Cowan, 1992). Mothers can serve as gatekeepers to the father-child relationship. Many women are ambivalent about greater father involvement for a variety of reasons including concerns about their husband’s competence as a caregiver, feared loss of control over a domain in which they exercised significant power, and an unwillingness to change their standards for housework and childcare.

Do men get postpartum depression? Much attention has been paid to postpartum depression in women, but there is some evidence that some men may experience depression after the birth of a child, and that paternal depression is linked to maternal depression. It is clear that psychosocial factors associated with maternal distress might also predict paternal distress. A literature search from 1980-2002 showed that in 20 studies, the incidence of paternal depression in the first postpartum year ranged from 1.2% to 25.5% in community samples, and from 24- 50% among men whose partners were experiencing postpartum depression (Goodman, 2004). Postnatal depression in fathers was associated with a history of depression in themselves and with the presence of depression in their wives or partners during pregnancy and soon after delivery. As gender roles and the extent of paternal involvement in child care continue to shift, the experience of having a child has been more clearly understood as impacting on both men and women.

Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. Postpartum depression in men can be significant problem and should be treated appropriately. Prevention and early treatment of depression in fathers may benefit not only themselves but also their spouses and their children (Goodman, 2004; Matthey et al, 2000; Lane et al, 1997; Matthey et al, 2003).

192 Divorced and separated fathers Divorced and separated fathers have some unique problems and challenges. The nature of the divorced father's involvement with his children is affected by psychological processes that enable him to separate his parental from his spousal role and identity. His ability to cope with the simultaneous absence of the spousal role and identity and presence of the paternal role and identity is a key factor in shaping the divorced father's behaviour toward his children. Physicians should encourage fathers to be strongly involved with their children (Baum, 2004).

Teenage fathers Although teenage pregnancy is at the center of much current social concern and political debate, the focus tends to be on the young mothers and their children. The lives and parenting experiences of young fathers typically receive less attention from researchers, practitioners, and policymakers. In one study, 25 low-income young fathers were asked questions about their own life experiences and social contexts, their connections with their children and female partners, and the implications these had for sense of self (Glikman, 2004). They were interviewed again one year later. The majority of young fathers were found to be involved significantly in the lives of their children, despite their own struggles. This in turn helped them feel positive about their sense of self. Physicians may have a role to play in supporting their teenage fathers in playing a positive parenting role with their child.

Role of the Family Physician Family physicians have the unique opportunity to work with families from conception to the grave to promote good health and parenting practices (Watson et al, 1995). In addition to being a health provider, they are frequently in the role of trusted advisor, educator and counselor, especially around parenting issues and roles, and specifically around fathering concerns and roles. Some fathers may have a degree of role confusion based on the rapid changes in modern-day society, and their own experience of their father. Family physicians can play an important role in supporting fathers throughout pregnancy, birth and early childhood. The majority of new fathers are excited by the prospect of having a child and parenting. Some fathers, however, can be confused, ambivalent, even anxious about the thought of having a child. Family physicians have many opportunities to include fathers in the birthing process during prenatal care, delivery and postpartum. In our clinic, we see many fathers providing a large amount of child care and it is evident that they express a need for more information and skills on child care and parenting issues, especially discipline.

Family physicians can play an important role in supporting fathers throughout pregnancy, birth and early childhood. There is some evidence that inclusion of fathers in the birthing process may increase their involvement in the postpartum and parenting years (Watson et al, 1995). One report suggested ways physicians can enhance fathers' caregiving involvement by offering specific, culturally sensitive advice and how physicians might change their office practices to support and increase fathers' active involvement in their children's care and development (Coleman and Garfield, 2004). In addition, there are several areas that a physician could discuss and explore with their new families as part of their routine care.

How do physicians and allied health care workers encourage more engaged fathering? We need to expand our understanding of the contributions that fathers make to the well being of their children, and communicate that information to both fathers and mothers.

193 While the provision of economic support is certainly important, it is neither the only nor the most important role that fathers play. Indeed, emphasizing fatherhood in largely economic terms has helped contribute to its many problems today. After all, if a father is nothing more than a paycheck to his children, he can easily be replaced by a welfare or child support cheque. If we want fathers to be more than just money machines, we need a culture that supports their work as teachers, coaches, nurturers, disciplinarians, and moral instructors.

Areas that could be Explored by the Family Physician

 expectations of the parenting roles for mother and father  renegotiation of couple's relationship (time, affection, intimacy)  issues around sexuality during pregnancy and postpartum period  division of household responsibilities  couple communication and conflict resolution skills  anticipatory guidance about life after baby  practical advice and education in both medical and psychosocial areas  support systems available (family, friends, parent groups etc...)

What to tell your new dads The first two weeks will be difficult and even a bit frightening for some dads. There will be many issues such as tasks and responsibilities for the couple to work out over the next few months. With shorter hospital stays, fathers need to take an active role right from the beginning and it might be worthwhile suggesting that he take 1-2 weeks off work. As mother will be focused on the baby and her own recovery, fathers should increase their housekeeping chores, meals and errands. If they can’t manage it all, a creative combination of volunteer and hired help can ease the load (Hoffman, 1999). In addition, fathers should limit visitors. Too many visitors, for too long, can be tiring. Fathers should be monitoring mother and baby for problems such as postpartum depression (PPD) and baby symptoms. A wide variety of postpartum disorders are seen in mothers. Controlled trials have shown the benefit of involving the child’s father in therapy, and of interventions promoting interaction between mother and infant. Finally, supporting breastfeeding is a key factor in breastfeeding success. Fathers can be given some strategies that make it easier for mother (Hoffman, 2001; Bader, 2005).

Fathers Support Programs There are a number of “Father” programs available across Canada that may allow physicians to be involved. The FIRA (Father Involvement Research Alliance), based at the Centre for Families, Work, and Well-being at the University of Guelph, is a five year funded program which studies seven cluster groups of fathers defined by the type of fathering experience-new fathers, young fathers, immigrant fathers, gay fathers, fathers of children with special needs, First Nations fathers, and separated and divorced fathers. The New Fathers cluster focuses on support services for fathers from the prenatal period through to 18 months of the child’s life; the new fathers’ physical and mental health; and the areas of support afforded by the health care system. This cluster includes members from Abbottsford, BC, London, ON. Montreal PQ, St. John, NB and Toronto ON. The content of the program includes topics on child development/child discipline, stress management, anger management, time management, nutrition and safety management.

194 The program is done in several different languages including Tamil, Chinese, Farsi and Korean and many of the sessions are lead by physicians.

References Allen S, Daly K (2003). The effects of father involvement: a summary of the research evidence. The FII-ONews (Newsletter of the Father Involvement Initiative). 1(Fall).

Bader E (2005). Building a medical home for new parents. Presented at the STFM conference, Amelia Island, USA, Feb.2005.

Baum N (2004). Coping with "absence-presence": noncustodial fathers' parenting behaviors. Am J Orthopsychiatry. 74(3): 316-24.

Belsky J, Kelly J (1994). The Transition to Parenthood: How A First Child Changes A Marriage. New York: Delacorte Press.

Brazelton TB (1995). Working with families. Opportunities for early intervention. Pediatric Clinics of North America. 42(1): 1-9

Coleman WL, Garfield C (2004). American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family Health. Pediatrics.113(5): 1406-11.

Condon JT, Boyce P, Corkindale CJ. (2004)The First-Time Fathers Study: a prospective study of the mental health and wellbeing of men during the transition to parenthood. Aust N Z J Psychiatry. 38(1-2): 56-64.

Cowan C, Cowan P (1992). When Partners become Parents: The Big Life Change for Couples. New York : Basic Books.

Glikman H (2004). Low-income young fathers: contexts, connections, and self. Soc Work. 49(2): 195-206.

Goodman J (2004). Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health. J. of Advanced Nursing. 45(1): 26-35.

Gottman J (1997). The Heart of Parenting: Raising an Emotionally Intelligent Child. New York: Simon & Shuster.

Hoffman J (2001). Hands-on dad: a guide for new fathers. In “Parenting for Life” series. Today’s Parent, Toronto.

King GA, Rogers CL, Walters GC, Oldershaw L (1994). Parenting behavior rating scales: preliminary validation with intrusive, abusive mothers. Child Abuse & Neglect. 18(3): 247-59.

Lane A, Keville R, Morris M, Kinsella A, Turner M, Barry S (1997). Postnatal depression and elation among mothers and their partners: prevalence and predictors. Br J Psychiatry. 171: 550-5.

195 Matthey S, Barnett B, Howie P, Kavanagh DJ (2003). Diagnosing postpartum depression in mothers and fathers: whatever happened to anxiety? J Affect Disord. 74(2): 139-47.

Matthey S, Barnett B, Ungerer J, Waters B (2000). Paternal and maternal depressed mood during the transition to parenthood. J Affect Disord. 60(2): 75-85.

Oldershaw,L (2002). A National Survey of Parents of Young Children April, 2002. www.investinkids.ca/content/ documents/parent_poll_10_29_02.pdf

Watson WJ, Watson L, Wetzel W, Watson L, Bader E, Talbot Y (1995). The Transition to Parenthood: What About Fathers? Can Family Physician J. 41:1042-50.

Yogman MV, Kindlon D, Earls F (1995). Father involvement and cognitive/behavioral outcomes for preterm infants. J Amer Acad Child and Adoles. Psychiatry. 34: 58-66.

196 Information for New Dads Living With New Moms and a New Baby

Authors: This information was developed by a group of women receiving treatment for postpartum mood disorders in a therapeutic group setting at Peoplematter in Muskoka- Parry Sound. For further information contact Linda Rankin, www.peoplematter.ca.

Dad…. things not to say to a new mom

“Why is the house such a mess?  Message I hear: Lazy irresponsible, not a good mother, mad, upset, what I do is not important  What it makes me feel like: mad, upset, and lower self-esteem  Instead. Reword and say: “How was your day?” “What can I do? Or. Where do you want me to start?”  Tone if voice should be friendly and helpful not sarcastic or judgmental

“What did you do all day?  Message I hear: you didn’t do anything all day  What it makes me feel like: angry, frustrated, lack of respect  Instead. Reword and say: “How did your day go?” Look for the things in the house/family that are positive  Partner needs to sound genuinely interested

“Why are you always complaining that you are tired?”  Message I hear: I’m inadequate, always making excuses for not measuring up  What it makes me feel like: guilt, upset, angry, disrespected  Instead. Reword and say:” You look tired, I’ll take the baby and you sleep in.” “I’ll get up with the baby and kids.” “Why don’t I order a pizza for dinner?” “Why don’t you take a nap I’ll make supper”?

“Are we ever going to have sex again?”  Message I hear: His physical needs are more important than my emotional needs. The myth that sex is the basis of our relationship. Jealous of time baby is receiving.  What it makes me feel like: feel threatened that partner may seek sex somewhere else. “Sex” to my partner is more important than me. I feel like a sex object.  Instead. Reword and say: “You let me know when you are ready.” “We will not do anything until you are ready” or “Would you like to cuddle?”

“You are a new mom you are supposed to look like “crap”  Message I hear: I don’t look attractive  What it makes me feel like: angry, depressed, ugly, wanted to lash out at him  Instead. Reword and say: “ You look beautiful…” and mean it. Say something positive or say nothing. If you say something positive be genuine and empathetic.

197 “When are you going back to work (or get a job)? We need the money”  Message I hear: you are lazy, not contributing to the family, their spending power is shrinking and this is about them  What it makes me feel like: worthlessness, angry, emotionally drained  Instead. Reword and say: “Would you like to go back to work? Either choice is OK with me.” “We can sit down and discuss the options when you are ready. Our choices will effect our budget, therefore, we will have to adjust to our budgets.” “We need to create a budget” or “we need to look at our spending priorities”

“We can’t afford it” (when I want to buy something)  Message I hear: you are not worth it  What it makes me feel like: worthless, felt trapped, he is in control and resentful  Instead. Reword and say: “lets see if we can find a way to readjust the budget to afford it.”

“Our (child) doesn’t act like that when he/she is with me”  Message I hear: you are not a good parent/ don’t know child as well as he does  What it makes me feel like: upset, angry, and unsure of parenting skills even when you know you are right, threatened loss of child  Instead. Reword and say: “This is what I find works”, offer positive suggestions or say nothing

“I work all day, I need my sleep”  Message I hear: He is the most important person here. His needs come first.  What it makes me feel like: devalued, resentful, and not important  Instead: Reword and say: should not say anything because both partners are exhausted

“Why are you holding on to all these clothes, you will never fit into these again anyway!”  Message I hear: fat, unattractive  What it makes me feel like: very hurtful, depressed, feel like a failure/ my self worth is based on how I looked prior to pregnancy  Instead. . Reword and say: Say nothing; find something positive to say remember we know our bodies has changed.  Weight topics should be off limits

Dad ….. Things not to do to new moms.

When the things aren’t the way you expected (dishes not done, laundry not done, baby crying, mom crying)  Don’t: complain, sigh, roll eyes, and give negative body language or negative words  Do: take responsibility for the things that are bothering you or the things that need to be done

198 When the baby is fussy:  Don’t: tell me about it…I already know  Do: something about helping

When you can’t find enough time for everything:  Don’t: Act like your life isn’t changed. My life has! Don’t assume this life-changing event is easy for either of us.  Do: Prioritize, adjust your schedule to ensure couple time and to ensure each partner time for themselves. Take responsibility for the changes in the family.

If you earn the family money:  Don’t: Think, believe, and behave like you are the bank  Do: Work out a budget together. Ensure both partners have equal amounts of spending money.

If mom makes money too:  Don’t: Assume she is responsible to pay for everything for the baby  Do: Share the financial responsibility for the baby’s needs

When mom needs time out:  Don’t: expect to be asked to “Baby-sit” your children and don’t try to control her time, encourage her to spend time with her friends and socialize  Do: Support her, encourage her to have fun, Spend quality time interacting with the baby (play, read, hold, cuddle) Looking after your child is a part of your routine now.

When mom is exhausted:  Don’t: criticize, go to sleep, go out, wait to be asked and don’t follow me into the bedroom  Do: take over and do as much as you can do

When dad has to do things that dad doesn’t want to do:  Don’t: make mom feel you are doing her a favour, and don’t expect anything in return  Do: cheerfully take on the tasks

When mom is confused about which method to use to feed the baby.  Don’t: say “why don’t you”…or…”you should”…or….”you are not going to…..!”  Do: find the answers together

When mom doesn’t have all the answers.  Don’t: say “why don’t you know?” or..”I never have that problem”....or “well you are the mom you are supposed to know”  Do: find the answers together

When you are at work …. mom is too.  Don’t: assume you are the only one working  Do: share the household responsibility while not at work. Respect and acknowledge moms never-ending contribution to building a healthy family.

199 When this new mom has very little time to look after you.  Don’t: become resentful and jealous  Do: Understand looking after a baby is difficult and overwhelming for every mom. Understand that the baby’s needs come first. The baby’s needs have to be met before yours. Understand that your supportive role is very very important.

When we can’t agree on parenting.  Don’t: assume you are right and I am wrong  Do: Plan on working on a compromise and respect my parenting requests. Design a parenting plan that the extended family can follow.

Remember:  More truth is spoken in sarcasm and it is a very negative way to speak to me.  Get involved in the baby’s activities inside and outside the home (doctors appointments, professional visits, play groups).

Four Things New Moms Need from New Dads:

1. Communication: Positive, honest verbal and non verbal.

 Positive words, and compliments  Not: criticisms/putdowns/sarcasm/jealousy  Do not blame me when things go wrong/or are not done  I hear what you do louder than your words  Negative comments and non-verbal communication will make me feel as thought I don’t “measure up”  Listen to me  Not: pretend to listen to me  Do not ignore my thoughts/needs/ideas/feelings/plans  Do not treat me as a lesser person whose thoughts and feelings are inferior to yours

2. Self Esteem: Encouragement, nurture self esteem and growth. a. Support:  Not: Criticisms/put downs/sarcasm/jealousy  Told what to do / or should do  Don’t sit there while I’m running around trying to do things  Ask if there is anything you can do and do it!  Do not sit there if things need to be done because I am tired b. Love, Let me be me.  Not: Do not expect me to be what I am not  Do not expect me to be a super mom/wife

200  Do not expect me to be an intimate sex partner/cook/etc when I am too tired  Respect my wishes  Give some hope that the future is going to get better

3. Rules: Mutually agreed upon, clear spoken set of rules for behaviours expected in our relationship and parenting our children.

Guilt free time to sleep:  Not: Do not expect me to be the one that has to meet all the needs of the baby/other family members  Do not expect me to do all the household tasks  If I am sleeping do not wake me up with demands

Guilt free time to re-energize, my way:  Not: no restrictions to be placed on my activities  Have resources available to be able to have the time away  I do not need to ask for the time to go out  Don’t tell me what to do and how to do it

Let me cry if I need to:  Not: Do not tell me to get over it  Do not call me names, but understand this is a part of the process  Do not make demands on me  Do not ask me why I am crying (I usually don’t understand this myself)  Do not expect me to justify why I am crying. There might not be an apparent reason.

Blended families:  All children need to be treated fairly and with consistency. Favouritism of one over the other will only cause dissension and tension in the relationship between the partners. Each time this happens it further undermines the parent’s relationship with each other.

4. Roles: A clearly established roles in the family so each family member clearly understands where and how they fit into this family.  Work with me: Determine how we will work together to make this family work… for example who takes the garbage out, who makes breakfast, who does the vacuuming?

201 Section 9: Literacy Early Childhood Literacy

Authors: Susan Ramsay, Debbie Nesbitt-Munroe, Joanne Morrissey, Sonya Bianchet

“Encouraging early childhood literacy could turn out to be our most potent ‘immunizing’ agent. It confers a high degree of lifetime immunity against poverty, educational failure, low self-esteem and poor health. Can you think of any vaccine that offers such a high level of lasting protection against so many serious human afflictions?” Richard Goldbloom, OC MD FRCPC, Honorary Chair of the Read to Me Program

In 2002, the Canadian Paediatric Society (CPS) released a position statement recommending that physicians make reading promotion part of good preventive health practice in order to help lay the foundation for reading success in school and a healthier, more successful life (CPS Position Statement (PP 2002-01) Paediatric Child Health Vol 7, No 6, July/August 2002).

Early literacy is the set of skills children need before they are able to read and write. Reading and writing skills develop simultaneously and are rooted in oral language interactions between a child and an adult.

Literacy and language development begin at birth—long before children start school. We know that the critical period for developing foundational skills occurs during the first three years of life. We cannot afford to wait until children enter school to address their literacy and language needs. The level of exposure children have to language and literacy experiences impacts their life-long learning.

“From as early as the first months through the second year of life, children’s experiences with oral language development and literacy begin to build a foundation for later reading success.” (Burns, Griffin, & Snow, 1999; Strickland & Morrow, 1988; Weaver, 1988)

How do literacy skills emerge? Development of early literacy is contingent on both clinical conditions and acquired knowledge.

Medical Conditions: Children’s reading problems can be a secondary symptom stemming from a primary physical and clinical condition such as:  (Specific) early language impairment  Learning disabilities  Severe cognitive deficiencies  Hearing impairment  Chronic otitis media  Attention deficit/hyperactivity disorder  Head injuries

202 Physical and clinical conditions can impair a child’s ability to: 1) Acquire proficiency in language: Spoken language and reading are intertwined. Reading comprehension depends heavily on oral language abilities. A child must be able to understand the meaning of words within the context of various sentence structures, and use words appropriately. Studies show that the level of skill in understanding and using words with grammatical clarity (using nouns, verbs, etc. appropriately), object naming with accuracy and speed, and sentence completion tasks, are predictors of children at risk for reading problems.

2) Retain and retrieve information: The ability to keep verbal information in working memory is essential for reading. The ability to retrieve knowledge about letters, numbers and sight vocabulary from memory determines comprehension. A kindergarten child’s ability to repeat sentences or to recall a brief story just read to him or her is strongly related to a child’s future reading achievement (Scarborough, 1998).

3) Acquire phonological awareness: Attention to the sounds of language is a critical metalinguistic skill. The ability to segment words or sentences and manipulate sounds involves treating language as the object of thought rather than merely using language for communication. This skill is imperative for literacy development.

Acquired Literacy Knowledge: Physical and clinical conditions can place children at-risk of reading problems. Acquired literacy knowledge is essential for children to become successful readers. Acquired knowledge enables children to understand and synthesize:

1) Function and value of print: Children learn that oral language is represented by print and that print is a form of communication. They understand that print has different purposes and formats (e.g. stories, lists, notes).

2) Concepts of print: In order to read, children need to understand how the printed word flows (e.g. in English print flows from top to bottom and left to right; books are read front to back, page by page).

3) Letter identification: Letter knowledge is the fundamental tool of written words. The ability to identify letters in random order at school entry is a strong predictor of reading success (Scanlon and Vellutino,1996).

4) Phonemic Awareness: Letter-sound associations are significant precursors to reading. Children need to be able to hear, for instance, that ‘chin’ has three separate sounds (‘ch’ ‘i’ ‘n’). Phonemic awareness is essential for children to move beyond a bank of sight vocabulary.

5) Vocabulary: Reading comprehension develops when children recognize print vocabulary from their oral context. Children develop a broad vocabulary when they have a chance to talk

203 about the meaning of new words. Children need help to discover and understand unfamiliar objects and ideas, enabling them to integrate new knowledge with what they already know.

What is the literacy and health connection? Recent brain research supports findings that young children who have problems with literacy and language may be at greater risk for behaviour, learning and health problems (Hertzman, 1999).

Children at-risk for literacy problems because of physical or medical conditions need early detection and intervention. Children at-risk for literacy problems due to lack of literacy knowledge can be impacted greatly through the support of their family physician. Physicians can help parents recognize how to nurture their child’s literacy to support long-term cognitive, social, emotional and physical health.

Parents will increase reading behaviors with their children if doctors recommend this practice and provide basic guidance (Weitzman et al, 2004). Children who are read to daily from birth have the best chance of becoming strong readers and learners.

Low literacy affects health:  Canadians who have low literacy skills are more likely to have:  Problems reading health information and prescriptions  Poorer health  Higher rates of chronic disease  An earlier death than those with a higher level of literacy skills.

If we want to raise children who can act upon health information and take control of their health, we need to promote early literacy development.

Facts about literacy:  Children who have reading difficulties often have an underlying speech-language difficulty that has not been identified or treated (Catts, 2002).  The majority of 4 and 5-year-old children (66%) with low receptive verbal skills come from two-parent, middle income families (Willms, 2001).  Studies show that parents with reading disabilities are more likely to have children with reading disabilities (31-62% versus 5-10% in general population) (Committee on the Prevention of Reading Difficulties in Young Children, 2002).

What can physicians do? Physicians can model literacy promotion in their waiting and examining rooms by providing a display of children’s books.

During the appointment:  Use Early Literacy Developmental Guide for age-appropriate expectations, red flags and literacy interventions.  Use books as tools in observing parent-child interaction and skill development.  Ask parent if they read to the child.  Refer to specialist for assessment (e.g. hearing, vision, speech & language, development, etc.)

204 Prescriptions for families:  Read to your baby or child.  Link to local Early Years Centres, libraries and other early learning programs.  Connect with local family literacy programs and Early Literacy Specialists.

Summary: All children reap long-term health and learning benefits when physicians promote early literacy development.

“Evidence shows that incorporating a reading promotion program into your practice can improve the reading ability of children and thereby bestow lifelong benefits.” (Robert Needlman, MD, Perri Klass, MD, and Barry Zuckerman, MD. Reach out and get your patients to read. Contemporary Pediatrics, January 2002)

References: Catts HW (2002). A Longitudinal Investigation of Reading Outcomes in Children With Language Impairments. Journal of Speech, Language and Hearing Research December, 45:1142-1157.

Committee on the Prevention of Reading Difficulties in Young Children (2002). Preventing Reading Difficulties in Young Children. National Research Council p.120.

Hertzman C (1999). Population health and human development. In: Developmental health and the wealth of nations. Ed. Keating, D. and Hertzman,C. New York: Guilford Press.

Weitzman CC, et al (2004). More Evidence for Reach Out and Read: A Home-Based Study. Pediatrics, 113:1248-1253.

Willms JD (2001). National Longitudinal Study of Children and Youth, 2001.

Reference Articles: Rescoria L (2002). Language and Reading Outcomes to Age 9 in Late-talking Toddlers. Bryn Mawr College; Journal of Speech, Language and Hearing Research, Vol.45.

Scarborough, HS (In press). Early identification of children at risk for reading disabilities: phonological awareness and some other promising predictors. In: Shapiro, B., Accardo, P., Capute, A., eds. Specific Reading Disability. Baltimore: York.

Shaywitz SE (1998). Dyslexia. N Eng J Med , 338:307.

205 Early Learning Literacy Guide Authors: Susan Ramsay, Debbie Nesbitt-Munroe, Joanne Morrissey, Sonya Bianchet

Family history of reading and learning disabilities: can be a Red Flag for a child at any age.

Early learning programs and services: Early Years Centres, Public Health home visiting programs, Aboriginal resource programs, Preschool programs (nursery schools, playgroups, daycares), Community Living.

Age Developmental Red Flags What Doctors What Parents Milestone Can Do Can Do  Studies high  Startle reflex  Consult with  Provide crib 0-3 months contrasts between absent Infant Hearing mobiles and books light and dark  At 3 months not Program with simple black and  Listens to tracking objects by  Refer for vision white patterns or parent/caregiver’s sight or sound testing pictures voice  Talk and sing to  Makes cooing or baby gurgling sounds  Imitate baby’s vocalizations  Use tickle rhymes with baby  Brightens to  Not responsive  Refer to Infant  Hold baby face 4-6 months sound, especially to sounds or familiar Hearing to face for gazing and voices voice  Consider referral talking  Seems to  Not babbling or to Preschool Speech  Use lullabies, understand some decrease in babbling & Language; Infant songs and gentle words (e.g. bye-bye)  Low or absent Development rhymes  Imitates sounds attention to human  Use board heard faces books with large  Reaches for and  Not mouthing simple pictures; also explores books with objects cloth, texture and hands and mouth vinyl bath time books  Point to and name pictures  Prefers pictures  Not saying early  Refer to Infant  Provide variety 7-12 months of faces sounds like da, ba, Hearing of texture books and  Points to ma, na  Refer to board books that pictures in books  By 12 months Preschool Speech & feature babies, within  Tries to turn not gesturing or Language; Infant infant’s reach pages of books pointing Development  Use bouncing several at a time rhymes  Points at  Does not point  Refer to Speech  Use finger plays, 12- 18 months pictures in book on to objects on request & Language; Infant action rhymes request (e.g. “Show  Does not say Development  Let child hold me the dog.”) first words or use a  Refer to the book while  Turns book right variety of speech pediatrician reading together side up and turns sounds  Ask family if  When reading pages  Does not they have access to together, expect and  Holds a crayon manipulate books or books and writing respect your child’s or pencil in fist and drawing materials in materials short attention span marks paper the expected manner  Recommend  Ask “Where’s  Shows community early the…?”Let child point displeasure with learning programs/ to the picture in the tickle, bouncing, services book nursery rhymes  Provide paper and crayons

206 Age Developmental Red Flags What Doctors What Parents Milestone Can Do Can Do  Asks for  Late talking  Refer to Speech  Pause when 18-24 months favourite books to be compared to other & Language; and reading familiar read repeatedly children Infant Development books for child to  Names familiar  Slow vocabulary  Refer to complete the pictures development over pediatrician sentence  Recites parts of time  Help child make well-known stories,  Does not the connection songs or rhymes pretend to read between the story  “Reads” to dolls  No interest in and his or her day to or stuffed animals holding a marker or day life  Turns board pencil  Say rhymes book pages easily  Does not  Read books that one at a time understand the encourage child to  Holds pencil with meaning of ‘more’ move and interact pincer grasp with the story (e.g.  Scribbles lift-the-flap books)  Understands  Encourage child concept of “one to play with non-toxic more” play dough to strengthen finger, hand muscles  Ask child if he or she wants one more cracker or story etc. when child finishes snack or story  Talks in short  Not able to  Refer to  Use books and By 3 years sentences recite rhymes Preschool Speech & storytelling in routines  Recites whole  Pronunciation Language and (e.g. bedtimes) phrases, sometimes problem at 3 years Children’s Treatment  Use fingerplays, whole stories (unusual patterns of Centre action rhymes and  Sings simple dropping, adding or  Refer for songs rhymes, songs substituting sounds) pediatric assessment  Be willing to  Protests when  No pincer grasp read the same story adult gets a word  Does not over and over wrong in a familiar understand difference  Provide variety story between one and of writing tools (e.g.  Imitates writing many colouring pencils, with linear scribbles  Not recognizing sidewalk chalk,  Copies a circle, signs and symbols in bathtub soap vertical and horizontal daily environment crayons, paint lines when shown (e.g. traffic signs, brushes)  Understands washroom signs in  Throughout the “just one” restaurants/school) day, ask your child to choose only one object (from a choice of several snacks, drinks, stories, markers etc.)  Encourage child to recognize letters in environmental print (e.g. ‘S’ on the ‘Stop’ sign)

207 Age Developmental Red Flags What Doctors What Parents Milestone Can Do Can Do  Listens with  Slow picture  Refer to Speech  Ask “What’s By 4 years appropriate labelling & Language (Ask for happening?” and responsiveness to a  Cannot copy a Phonological “What is going to story read by an adult circle when shown Awareness happen?” as you read for 10 minutes Assessment) stories together  Can retell  Refer for  Encourage familiar story using a pediatric and retelling of a familiar book or pictures psychometric story using the book’s  Understands assessments pictures that words are read,  Show child how and text has different to print letters functions (lists,  Sing rhyming recipes, signs, notes, songs and games like stories etc.) “Down by the Bay”  Makes up  Provide rhyming words scissors, paper,  ‘Writes’ own drawing and writing name (scribble) tools  Begins to  Provide recognize some cardboard shapes to letters (e.g. letters in trace around name)  Look at pictures  Snips paper in books for  Traces circle, similarities and triangle, square using differences from page templates to page  Counts to ten in  Count fingers, imitation and begins toes, stair steps and to develop a objects throughout corresponding the day understanding of quantity for these numbers  Uses extensive  Speaks with  Refer to School  Ask “how” By 5 years vocabulary and adult- poor grammatical Educational Services questions about the like grammar structure (Speech & Language; story you read  Understands  Can’t break Psychological together that letters, words simple two-syllable Assessment)  Use books that and sentences are words into parts  Refer for show absurd pictures different; that text  Confuses well- pediatric assessment or ideas. Ask your flows in a consistent known basic words child why it’s silly direction (e.g. run, eat, want)  Ask child to tell  Predicts  Not able to you a story from his storyline make up rhyming or her imagination  Tells stories words  Practice printing without pictures  Cannot identify name & letters  Changes a some alphabet letters  Draw circles, sound in a word to  Cannot copy a curved shapes on make a new word square paper for your child to  Copies letters  Cannot count to cut along  Cuts paper 5 in imitation  Play counting along curved line games and finger  Begins to play rhymes recognize some  Play ‘I Spy’ for numbers numbers in the environment (e.g. clocks, signs)

208 Promoting Literacy in the Physician’s Office

Author: Dr Peter Nieman

Objectives The objectives of this statement are as follows.  Review the importance of early reading in promoting literacy.  Discuss current evidence-based research on how literacy develops.  Review the developmental and psychosocial implications of illiteracy.  Help the primary care physician provide practical resources that can be used to promote literacy.

Introduction Research continues to demonstrate the importance of the environment on early brain development (NCCIP, 1991). One of the ways to create a positive environment is to develop early language and literacy skills by reading to children (Needlman & Zuckerman, 1992). Children whose parents read aloud to them at an early age are more likely to succeed in school than children who were not read to at an early age (Needlman & Zuckerman, 1992).

Primary care physicians who have repeated contact with the family at an early stage have a unique opportunity to promote literacy. Because the foundations of literacy are laid down long before children enter school, physicians can help to prevent early reading failure (Needlman et al, 1991). By prescribing a book, encouraging and teaching the child’s caregiver to read aloud more often, providing resources and handouts, and by supporting local and national reading promotion programs, physicians can play an influential and significant role in promoting literacy (Needlman et al, 1991).

The economic and psychosocial consequences of illiteracy make literacy promotion a key part of practicing preventive medicine (Baker et al, 1997). Promoting literacy begins long before children enter school. The amount of time it takes to encourage and provide anticipatory guidance to families should be seen as an investment in offering lasting benefits to the child and society at large.

This position statement will help physicians promote literacy by providing resources and suggestions that can be easily and practically incorporated in a busy primary care setting (Needlman & Zuckerman, 1992). Talking with parents about literacy development is a powerful and simple intervention – one that should be part of a good anticipatory guidance program (Needlman & Zuckerman, 1992). Such guidance will be enhanced by access to appropriate and scientifically based resources.

The Importance of Early Reading Many factors influence literacy acquisition (Teale & Sulzby, 1986). Many are controversial (for example, the controversy over phonics versus whole language), but this paper will not address the debate over the ideal method of teaching children to read in a school setting (Snow, 1983).

However, there is much agreement about the benefits of a caregiver reading aloud to a child (Koralek & Collins, 1997). The National Commission on Reading, based in

209 Washington, District of Columbia, concluded in 1985 that, “reading aloud by parents is the single most important activity for building the knowledge required for eventual success in reading” (Needlman & Zuckerman, 1992).

Parental input in the early stages of literacy development is crucial. Still, a 1996 survey by the Commonwealth Fund revealed that only 39% of parents with children younger than three years old read to those children daily (AAP, 1999).

Books are powerful promoters of optimal childhood development for the following reasons:  Positive exposure to children’s books motivates children to master reading for themselves. When the usefulness and pleasure of reading is modelled at a young age, it positively motivates the child at a time when he or she is eager to learn (Needleman & Zuckerman, 1992).  Children who are read to from an early age learn to associate books with their parents’ love and attention. Reading has the potential to strengthen the parent child bond (Needleman & Zuckerman, 1992). It creates an enjoyable family experience. Children learn to use stories to satisfy desires and to work through their fears and problems. Favourite books may join blankets and teddy bears as transitional objects. Children form emotional ties with books and their characters.

Books also play an important role in the development of Verbal language, which is highly correlated with literacy. By sharing books with their young children, parents engage in repetitive verbal exchanges and routines. Elements of shared attention, immediate feedback, and the parents’ ability to adjust the difficulty of the task to the children’s ability make reading routines ideal for learning language (Zuckerman & Chase, 1984).

Exposure to stories teaches a child how literary narratives are constructed – with a beginning, middle and end. Children internalize this narrative structure at an early age and put it to use later at school when describing, for example, what they did over the weekend or vacation (Snow, 1983). This skill helps children to become more creative and explore new ideas (Whitehurst et al, 1988).

Children who have not been read to regularly at an early age may start school not believing that reading is important and fun. When reading is presented as a set of cognitive tasks, children may not be motivated to read. They may see it as an empty exercise or even a form of slow torture (Needlman & Zuckerman, 1992).

Selecting books that are interesting and appealing to both children and parents is key to successful literacy development. Factors to consider in choosing books include:  quality;  developmental appropriateness;  cultural appropriateness;  variety; and  cost (Needlman & Zuckerman, 1992).

Quality Books should be reviewed for visual appeal, content and message. The language should be rich and interesting and the illustrations should be attractive and colourful.

210 Developmental appropriateness The child’s age should determine the type and length of their books. As they grow up and their attention span increases, they like longer stories.  Infants like books with photographs of other babies, textures, bright colours and taste, and familiar objects such as balls and bottles.  Toddlers like books that are sturdy and have photographs or pictures of children doing familiar things such as sleeping or playing; books about saying hello and good-bye; books with only a few words on each page; books with simple rhymes and predictable texts; and books about animals.

 Preschoolers like books that tell stories about kids their age, making friends, going to school or the doctor, or having brothers and sisters. They also enjoy simple texts they can memorize.

Cultural appropriateness Books should be assessed carefully for messages related to sexism or racism. Illustrations should depict abilities, cultures, families and sexes in a positive way. Research shows that culturally appropriate intervention significantly increases literacy behaviours in low-income minority families (Golova et al, 1999).

Variety Children have different interests and they usually like characters, situations and topics to which they can relate. Books about people, animals, imaginary characters, the environment, folk tales, nursery rhymes and sports help children enjoy learning about new things.

Cost Discounts are often available when books are ordered in bulk, which should be considered when launching a literacy program in a clinic setting. Many libraries, service organizations and private companies increasingly realize the importance of early literacy and reading to children. Companies may offer financial support to expose as many children as possible to good and affordable books (eg, Starbucks Annual All Books for Children Book Drive).

How Literacy Develops The traditional belief was that children learned to talk at home, then learned to read in the early grades before learning to write. As recently as the 1960s, some developmental experts believed that reading and writing could be taught only by trained and qualified educators and only after the age of six-and-a-half years. Some experts even believed that earlier exposure to reading risked subsequent learning disabilities (Morphett & Washburn, 1931).

Two studies published in 1966 began to change the view that early literacy education ran the risk of later learning difficulties (Durkin, 1966). These were the first studies showing that children who learned to read in preschool excelled throughout grade school. Their success was not associated with superior intelligence or higher social class, but with having been read to by their parents (Durkin, 1966).

211 Most children in literate societies have an understanding about reading and writing at an early age (Needlman & Zuckerman, 1992).

The earliest stages of literacy overlap with spoken language development (Snow, 1983), and the two are closely linked (High et al, 2000). One of the best predictors of reading ability is the size of a child’s spoken vocabulary (Whitehurst et al, 1988). Reading disability is increasingly seen as an expression of an underlying processing disorder (Zuckerman et al, 1984). Just as ‘baby talk’ precedes the development of mature speech, children pass through immature gestures and stages of literacy on the way to mature reading and writing. However, there is one major difference – almost all children eventually learn to talk, but many never master the written word (Needleman & Zuckerman, 1992).

Developmental milestones of early literacy Age Motor function Cognitive/social ability Interaction with parents 6–12 months Reaches for book Looks at pictures, vocalizes, Parent holds child comfortably, Brings book to mouth pats picture face-to-face gaze Sits in lap Prefers photographs of faces Parent follows baby’s cues for Holds head up steadily ‘more’ and ‘stop’ 12–18 months Holds book with help No longer mouths right away Child gets upset if parent won’t Turns pages, several at a Points at pictures with one give up control of book time finger Child may bring book to be read Sits without support May label a particular picture If parent insists that the child Able to carry book with a specific sound listen, child may insistently refuse 18–36 months Turns one page at a time Names familiar pictures Parent asks “What’s that?” and Carries book around house Attention varies highly gives the child time to answer Asks for the same story over Parent relates book to child’s and over‘ experiences Reads’ books to dolls Parent should be comfortable with fluctuating attention of toddler 3 years and older Holds book without help Describes simple actions Can Parent asks questions like Turns normal thickness retell familiar story “What’s happening?” pages one at a time Plays at reading, moving Parent validates child’s responses finger from left to right, top to and elaborates on them bottom‘ Parent does not drill child, but Writes’ name (linear scribble) shows pleasure when child supplies word

Psychosocial Implications of Illiteracy About 5% to 15% of school children have significant reading delays (Needlman & Zuckerman, 1992), and reading problems are more common in boys than in girls (Pholips, 2000). Nationwide, 55% of 13-year-old girls read at an advanced level compared with just 33% of boys (Philips, 2000). Illiteracy starts in early elementary school when children fail to read and write. At its roots, then, illiteracy is primarily a paediatric problem.

The percentages of children with reading problems may be quite high in underprivileged populations – those who live in poverty and who have reading-disabled parents (AAP, 1999). These children are at an increased risk for failing in school altogether (Baker et al, 1997) and will most likely face a great number of psychosocial challenges such as:  low self-esteem;  teen parenthood;  delinquency (80% of Canadian inmates have literacy problems);  substance abuse;  greater economic disadvantages later in life; and  greater economic burden on society at large.

212 Individuals with low literacy skills may have more difficulty finding employment and performing a job adequately (Baker et al, 1997). Illiteracy may also result in lower productivity than that in other countries. Literacy problems cost Canadian employers $4 billion/year and the country $10 billion/year (Stats Canada, 1995). Illiteracy leads to higher health care costs due to poor health status and higher rates of being hospitalized (Baker et al, 1997). Some well-known blue-chip companies in North America recognize the amplitude of this problem and have made financial contributions to programs aimed at preventing illiteracy (Wilson, 2000).

It is important, therefore, for primary care physicians to identify groups at higher risk for illiteracy and to get these patients into preventive programs that focus on literacy. Children living in poverty are at particular risk for becoming below-average readers, but when they are identified and helped early, the prognosis for improvement is guardedly good (Golova et al, 1999).

The Role of the Physician in Literacy Promotion All parents face the challenges of preparing their children to read and develop optimally. And many parents and caregivers consider paediatricians to be experts in their children’s health and development. Advice, suggestions and encouragement given by the primary care physician at an early stage of a child’s development may benefit families greatly (High et al, 1998).

Literacy counselling impacts and changes the behaviour of youths and their parents. A study by the Reach Out and Read program at the Boston Medical Center (AAP, 1999) found that parents who received literacy counselling and a book during a clinic visit were four times more likely to look at books with their children than parents who did not.

The Office Physicians can promote literacy and early childhood reading by facilitating reading in the office.  Have culturally and age-appropriate books and magazines available in the waiting room.  Display visual reminders (such as posters and videos) of parents and caregivers reading out loud together. Pictures of celebrities – influential athletes, artists, entertainers or politicians – may add extra value. Display posters promoting events such as National TV Turn-off Week.  Implement a reading promotion program in your own practice. The Reach Out and Read program, developed at the Boston Medical Center, may serve as a very useful model of how an early literacy program can be launched and developed further to suit the practice setting (AAP, 1999).  Encourage parents to watch less television and read more to their children (CPS, 1999). It is never too early to make books part of a child’s life (High et al, 1998).  Cultivate strong relationships between parents and medical providers to help parents help their children develop a love for books and reading. Regularly scheduled well-child visits are ideal for focusing specifically on promoting literacy. Literacy development should become a standard part of good paediatric care.  Allow volunteer readers to demonstrate vividly in the waiting room that reading aloud can be a source of pleasure and entertainment. This may be

213 especially helpful if the practitioner is too busy to model how parents and caregivers can read to their children.  At office visits, provide parents with resource lists of how to select books that are age-appropriate (AAP, 1999). Many libraries offer such resources and will provide printed, easy-to-display criteria lists for selecting the right books.  Encourage visits to local libraries and tell parents who cannot afford to buy books to consider getting a library card.

Society Many organizations in North America finance and support literacy promotion. The physician can:  Make parents aware of these resources and organizations during routine well-child visits, especially during the moments when prevention and anticipatory guidance are taught.  Encourage local and national paediatric societies to form alliances with well- established literacy promotion organizations such as the National Library Society, Ottawa.  Work together with other childcare providers at the community level to encourage parents to develop ideas to promote literacy locally.  Support book drives to provide books to the local neighbourhood children. Support professional sports teams that offer their time to support literacy programs.  During vacations, consider donating unread magazines and newspapers to schools.  Lobby politicians who have an interest in literacy promotion.

The Media Promoting literacy in a physician’s office helps to change parental behaviour (Needlman & Zuckerman, 1991). With the help of the media, physicians can reach an even wider audience. The physician can:  Accept opportunities to be interviewed by radio, television or the printed media. This is especially useful during the Annual Children’s Book Week in Canada (usually every fall).  Use the interview as an opportunity to educate the media and the public at large.  Identify, during the interview, literacy promotion programs both locally and nationally. Raising the awareness of both the public and the media is a crucial first step.  Have one main message, repeat it often and keep it simple and easy to understand. Leave a useful Internet Web site for the viewers for future use.

214 Useful resources in promoting literacy

Organizations ABC Canada 1450 Don Mills Road, Don Mills, Ontario M3B 2X7, telephone 416-442-2292 Beginning with Books An organization founded in 1984, working with parents to provide early experiences with books that lay the groundwork for mastery of reading and for school success Canadian Institute of Reading Recovery A nonprofit program used by the Toronto District School Board and other school boards in Canada Canadian Library Association Provides links to other sites of local libraries and services on the programs offered Canadian Paediatric Society For parents: . Includes documents on reading to babies, and helping school-aged children develop their reading skills Physicians can contact the CPS for copies of One More Story, a booklet to encourage parents to read to babies. E-mail [email protected] Fédération canadienne pour 235 Montreal Road, Suite 205, Vanier, Ontario K1L 6C7, telephone 613-749- l’alphabétisation en français 5333 Frontier College Frontière, Helping 35 Jackes Avenue, Toronto, Ontario M4T 1E2, telephone 416-923-3591 Canada Read Movement for Canadian Literacy 458 Maclaren Street, 2nd Floor, Ottawa, Ontario K1R 5K6, telephone 613- 563-2464 National Literacy Secretariat Politician with an interest in literacy Senator Joyce Fairbairn, The Senate of Canada, Ottawa, Ontario K1S 0A4, promotion telephone 613-996-4382 Reach Out and Read National Center, Boston Medical Center. A program that integrates early literacy into paediatric primary care, and provides additional training in designing and launching literacy programs, fundraising skills and establishing collaborations. Telephone 617-414-5701, fax 617-414-7557, e-mail [email protected], Web site Books

Choosing Books for Kids: Choosing the Oppenheim JF, Brenner B, Boegehold BD. New York: Ballentine Books, Right Book for the Right Child at the 1986. Right Time How to Make Your Child a Reader for Kropp P. New York: Random House, 2000 Life ISBN 0-679-31059-2 Ben Wicks books series, Toronto: Ben Wicks & Associates. 449A Jarvis Street, Toronto, Ontario M4Y2G8. Web site How to Stock a Home Library Williams Jane A. Placerville: Bluestocking Press, 1995 Inexpensively Rethinking the Brain: New Insights into Shore R. New York: Families and Work Institute, 1997 Early Development The Read-Aloud Handbook Trelease J. New York: Penguin Books, 1995 Web sites

American Academy of Pediatrics Read Me A Story – Designed to give parents research-based information development from birth to 10 years of age Association for Library Services to How to nurture a baby’s love of reading Children I Am Your Child Foundation Rob Reiner, Michele Singer Reiner, and Ellen Gilbert formed the I Am Your Child Foundation and began a national public awareness and engagement campaign to communicate the importance of the prenatal period through the first three years of life Laubach Literacy of Canada World’s largest and oldest literacy organization Public Broadcast Station A Web page designed to provide parents with basic information about the reading advice The Oppenheim Toy Portfolio A Web site, updated each year, that gives advice on selecting the latest books appropriate for promoting literacy development. Many of these books include award-winning literary selections for children

215 References American Academy of Pediatrics (1999). Literacy Promotion. Technical Assistance. Elk Grove Village: American Academy of Pediatrics, Division of Community-based Initiative.

Baker DW, Parker RM, Williams MV, Clark WS, Nurss J (1997). The relationship of patient reading ability to self-reported health and use of health services. Am J Public Health, 87:1027-30.

Canadian Paediatric Society, Psychosocial Paediatrics Committee (1999). Children and the Media. Paediatr Child Health, 4:350-4.

Durkin D (1966). Children Who Read Early: Two Longitudinal Studies. New York: Teachers College Press.

Golova N, Alario AJ, Vivier PM, Rodriguez M, High PC (1999). Literacy promotion for hispanic families in a primary care setting: A randomized, controlled trial. Pediatrics 103:993-7.

High P, Hopman M, Lagasse L, Linn H (1998). Evaluation of a clinic-based program to promote book sharing and bedtime routines among lowincome urban families with young children. Arch Pediatr Adol Med, 152:459-65.

High PC, Lagasse L, Becker S, Ahlgren I, Gardner A (2000). Literacy promotion in primary care pediatrics: Can we make a difference? Pediatrics, 105:927-34.

Koralek D, Collins R (1997). On the Road to Reading: A Guide for Community Partners. 1997. .

Morphett MV, Washburn C (1931). When should children begin to read? Elem Schl J 31:496.

National Center for Clincial Infant Programs (1991). Zero to Three. Bulletin of the National Center for Clinical Infant Programs. Washington: National Center for Clinical Infant Programs, September.

Needlman R, Fried LE, Morley DS, Taylor S, Zuckerman B (1991). Clinic-based intervention to promote literacy. AJDC. 145:881-4.

Needlman R, Zuckerman B (1992). Fight illiteracy: Prescribe a book. Contemp Pediatr, 3:41-60.

Philips L (2000). Alberta’s Center for Research in Literacy. Interview with Globe and Mail, March 15.

Snow C (1983). Literacy and language: Relationships during the preschool years. Harvard Ed Rev, 53:165.

Statistics Canada (1995). Adult Literacy Survey of Statistics Canada. Ottawa: Statistics Canada.

216 Teale W, Sulzby E (1986). Emergent literacy as a perspective for examining how young children become writers and readers in emergent literacy: Writing and Reading. Norwood: Alex Publishing Corp.

Whitehurst GJ, Falco FL, Lonigan CJ (1988). Accelerating language development through picture book reading. Dev Psychol, 24:552.

Wilson A (2000). The Gift of Literacy. Time Magazine, July 24.

Zuckerman B, Chase C (1984). Specific learning disabilities and dyslexia: A language- based model. In: Barness L, ed. Advances in Pediatrics. Chicago: Year Book Publishers, 249-80.

217 Additional Literacy Services

Contact Information Brief Description National Adult Literacy Database Provides information, research and links to Phone: 1-800-720-6253 local coalitions supporting adults involved Website: www.nald.ca in literacy education Metro Toronto Movement for Literacy Your link to child, family and adult literacy Phone: (613) 563-2504 organizations and programs in Ontario Website: www.literacy.ca Ontario Literacy Coalition Provides access to database of adult Phone: (416) 963-5787 literacy programs, resources, services and Website: www.on.literacy.ca activities across Canada

218 Appendix 1: ALPHA Provider Form and Self Report http://dfcm19.med.utoronto.ca/research/alpha/

219 Appendix 2: Red Flags Developmental Reference Guide www.region.york.on.ca/NR/rdonlyres/djgdobpvty7xrachufmfr34gg5rwtcuagyaib7jrz3j5rw 65fijpxoaknnxlkca3lc5rqs3ea4wfcwxepjv7kai7bb/Red+Flags+Guide+%28web%29.pdf

220 Appendix 3: Playing it Safe: Childproofing for Environmental Health www.healthyenvironmentforkids.ca/img_upload/13297cd6a147585a24c1c6233d8d96d8/ Brochure_English_8_pages.pdf

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