Parents' Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD) by Charlotte Dianne Strahm B.S.N., Valparaiso University, 1991 M.S.N., Valparaiso University, 1995 Submitted to Rush University in Partial fulfillment of the requirements for the degree of Doctor of Nursing Science (c) Copyright by Charlotte Dianne Strahm, 2008 All Rights Reserved ii DISSERTATION APPROVAL FORM The undersigned have examined the dissertation entitled: Parents' Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD) presented by: Charlotte Dianne Strahm a candidate for the degree of Doctor of Nursing Science and hereby Certify that in their judgment it is worthy of acceptance. Deborah Gross (Chairperson) 5-13-08 Kathleen Delaney Professor Associate Professor College of Nursing College of Nursing Rush University Rush University Richard Hug 5-13-08 Associate Professor Public and Environmental Affairs Indiana University Northwest Ill ABSTRACT Title of Dissertation: Parent's Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD) Charlotte Strahm, Doctor of Nursing Science, 2008 Dissertation directed by: Deborah Gross, Professor College of Nursing Attention Deficit Hyperactivity Disorder (ADHD) is a common neurobiological disorder affecting 3%-l 1% of children leading to 30% -50% of child referrals for mental health services. Symptoms include diminished attention span, hyperactivity, and impulsivity, behaviors that can negatively affect family relationships and functioning. The purpose of this study is to describe aspects of perceived family quality among those with and without a child diagnosed with ADHD. The convenience sample consisted of 11 families of 6-12 year old children with ADHD and 12 families of children with no known physical or emotional disabilities. All children in the ADHD group were receiving medication to manage their ADHD symptoms (M = 2.9 years of medication use). Mothers (n = 22) and fathers (n = 22) completed measures of family functioning and parenting stress. Family interactions were audiotaped during two consecutive mornings to obtain data on positive and negative affective tone of family interactions (n = 119) and later coded by raters blind to group assignment using the Audio- Rating Scale (ARS). Parents also completed the Daily Routine Worksheet (DRW to record time to complete morning routines, number of routines and parental effort required to complete routines. iv Results showed that parents in the ADHD group had significantly lower family functioning in marital and sibling relationships than parents in the typical group and higher parenting stress. In the ADHD group, fathers perceived the child as having a greater impact on the marriage than did mothers. No group differences were found on ratings of affective tone or time and effort required to complete morning routine. The findings suggest that although ADHD has a significant impact on family relationships and stress, parents work hard to maintain a positive environment for their children with ADHD. Findings can enhance clinician understanding of parents' experiences raising a child with ADHD and the impact maintaining a positive family environment may have on marital and sibling relationships. Generalizability of the findings is limited by the small, homogenous sample. Suggestions for future research are discussed. V DEDICATION David Strahm Charles and Dessie Starrick Katelin Miller vi ACKNOWLEDGEMENTS I want to first acknowledge my academic advisor and dissertation chair, Dr. Deborah Gross. Debbie has been a mentor, a listening ear and encouragement through my toughest times. She is a leader among women and a true example of excellence in the profession of nursing. Second, I want to thank my dissertation committee members: Dr. Kathleen Delaney and Dr. Richard Hug. Their encouragement and support has been unwavering throughout this process. Their questions and constructive feedback stretched my thinking, while building my confidence they are truly appreciated. I must acknowledge the families that opened their homes and hearts to participate in this study. Their courage and willingness made this study possible. I thank the people who served as coders of the audio tapes, who patiently listened and documented hours of family interactions. I also thank Dr. Carole Pepa for her support, availability and friendship. I want to thank my husband David Strahm for his love and support throughout this long journey. I thank my mother Dessie Starrick; my in-laws Richard and Jeannine Strahm, my children Sarah Miller and Corey Strahm; my granddaughters, Katelin, Taryn and Aubrie for their love, encouragement and prayers. I want to acknowledge three strong women who exemplify how to live without bitterness, but live each day with hope, faith, and love, Opal, Eva, and Erma my grandmothers. Finally, I want to acknowledge God for the wisdom and strength to endure. vii TABLE OF CONTENTS CHAPTER PAGE I. PROBLEM STATEMENT 1 A. Introduction 1 B. Purpose of the Study 3 C. Conceptual Framework 4 D. Significance of the Study 9 E. Summary 10 F. Research Hypotheses 11 II. LITERATURE REVIEW 13 A. Introduction 13 B. Genetic Approach 13 C. Neurobiological Approach 14 D. Cognitive Behavioral Approaches 15 E. Diagnostic Developments and Treatment: Pharmacotherapy 18 F. Behavioral Treatment 22 G. Combined Treatment: Stimulant & Parent Training Programs 23 H. Stress and Parenting Stress 25 I. The Child with ADHD and Parenting Stress r. 26 J. Summary 28 III. METHODLOGY 30 A. Introduction 30 B. Design 30 C. Setting and Sample 30 1. Family Inclusion Criteria 31 2. Child Inclusion Criteria 32 3. Exclusion Criteria 32 D. Variables and Measures 33 1. Variables of Interest and Measures 34 2. Family Impact 34 3. Parenting Stress 35 4. Parenting Effort 37 5. Affective Tone 39 E. Procedures 41 1. Initial Home Visit , 41 2. Audio Taping Morning Routine 42 3. Benefits 43 TABLE OF CONTENTS (continued) CHAPTER PAGE 4. Confidentiality 43 F. DataAnalysis 44 IV. RESULTS 47 A. Introduction 47 B. Description of the Sample 47 C. Marital and Parental Status 50 D. Medical and Psychological Diagnosis of the Children 51 E. ADHD Diagnosis 52 F. Reported Pregnancy or Birth Issues 52 G. Identified Parent Support 52 H. Test for Significance of Hypotheses Addressing the Quality of Family Functioning 53 1. Quality of Family Functioning 53 2. Parental Stress 56 3. Affective Tone 58 Morning Tasks 61 1. Time to Complete Tasks 62 2. Parental Effort 63 I. Additional Findings of the Morning Experience 63 V. DISSCUSSION 66 A. Introduction 66 B. Quality of Family Functioning 66 C. Parenting Stress 69 D. Quality and Affective Tone of Morning Routine 70 E. Time and Morning Task Completion 72 F. Limitations of the Study 73 G. Conclusions 75 REFERENCES 77 APPENDICES 96 Appendix A (Advertisement and Information Sheet) 96 Appendix B (Consents and Child Assent) 100 Appendix C ( Study Forms) 109 ix LIST OF TABLES TABLE PAGE 1. Recruitment Method , 48 2. Demographic Characteristics of Mothers 49 3. Demographic Characteristics of Fathers 50 4. Demographic Characteristics of the Children 51 5. Family Impact by Diagnostic Group 54 6. Mothers & Fathers Perceived Impact on Family Functioning for the ADHD Group 56 7. Parenting Stress Scores by Group 57 8. Parents'Mean Stress Scores ADHD Group 58 9. Frequencies and Percent of Negative and Neutral Affective Tone During Morning Routines in Group 60 10. Frequencies and Percent of Positive Affective Tone During Morning Routines Group 61 X LIST OF FIGURES FIGURE PAGE 2. Decision Making and Dysfunction of the Inhibition System 17 3. Variables of Interest and Measures 34 1 CHAPTER 1: PROBLEM STATEMENT Introduction A child makes the journey to adulthood one day at a time. Parenting a child to adulthood is a rewarding experience however not one without its challenges. Parents accompanying their child on this journey are expected to prepare the child to become a responsible adult, even as the parents endeavor to balance multiple personal demands related to career and family. Parents attempting to teach responsible behaviors and set limits (household chores, homework, or appropriate social behavior) often meet resistance from their child. Typical challenges experienced by a parent when interacting with their child include resistant behaviors such as: nagging, whining, or complaining (Belsky, Crnic, & Gable, 1995; Crnic, Acevedo, & Bornstein, 1995; Crnic & Greenberg, 1990; Harrison & Sofronoff, 2002; Jacobson, 1999; Kaplanek, 2002; Ostberg & Hagekull, 2000). Parents with children with Attention Deficit Hyperactivity Disorder (ADHD) find these typical challenges are intensified by their child's unpredictable behavior marked by defiance, over activity, and intense negative responses (tantrums, loud speech, or aggression) leading to increased parental frustration and stress (Barkley, 2000a; Gresham, MacMillan, Bocian, Ward, & Forness, 1998; Hinshaw, 1992; Mash & Johnston, 1983). Parenting can be challenging. Being a parent of a child with ADHD can be very challenging. Nature of ADHD ADHD is the most commonly diagnosed neurobiological and behavioral disorder of childhood, estimated to affect 3% to 11% of school-age children and account for 30% to 50% of child referrals to mental health services (Barkley, 1995, 1997b, 2002; Jensen, 2 2000; Kendall, 1997; NIH,1999; Robinson, Sclar, Skaer, & Galin, 1999; Shaywitz, Fletcher, & Shaywitz, 1997; Seidman, Biederman, Farone, Weber, & Ouellette, 1997; Weinberg, 1999). Criteria to define ADHD have been developed