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

Professor

College of Nursing

Rush University

Kathleen Delaney

Associate Professor

College of Nursing

Rush University

Richard Hug

Associate Professor

5-13-08

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.

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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

CHAPTER

TABLE OF CONTENTS (continued)

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

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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

LIST OF FIGURES X

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 by the American

Psychiatric Association (APA) and are outlined in the Diagnostic and Statistical Manual

Of Mental Disorders (4th edition) (DSM-IV, 1994, pp. 78-85, 2000). The core symptoms

of ADHD help explain the potential difficulties parents can face in raising the ADHD

child compared to raising a "typical" child. The core symptoms of ADHD include:

developmentally inappropriate levels of attention, concentration, impulsivity, aggression

or hyperactivity that leads to pervasive functional impairment across multiple settings

(such as the home, school and within peer relationships) (Althoff, Rettew, & Hudziak,

2003; APA, 1994, 2000; Melnick & Hinshaw, 2000; NIH, 1999).

The severity of the child's impairments create substantial difficulties necessitating

extensive parental intervention, often at a level of skill above that required for parenting a

normal or typical child (Anastopoulos, Shelton, DuPaul & Guevremont, 1993; Barkley,

1995; Everett & Volgy Everett, 1999; Kendall, 1998; Mash & Johnston, 1983; Melnick &

Hinshaw, 2000; NIH, 1999; Weinberg, 1999). Children with ADHD often do not respond

to typical child management strategies, being less compliant with their parents'

commands and less likely to remain on task, while displaying more negative disruptive

behavior than children their age without ADHD (Bussing et al., 2003; Donenberg &

Baker, 1993: Fischer, 1990; Harborne, Wolpert, & Clare, 2004; Kendall, 1998; Kendall,

Hatton, Beckett, & Leo, 2003; Wells et al , 2000a). In a study by Patterson (1982)

findings indicated that when parents of non-problem children punished coercive

behaviors three out of four times the child's coercive behaviors where suppressed.

3

However, when parents of problem children used the same type of consequences, the

likelihood increased that the problem child would continue with disruptive behaviors.

For the parents of children with ADHD living with disruptive behavior may last years.

Once thought to only exist in childhood, ADHD has been found to last well into

adulthood, impacting family functioning over several years (Anastopolous & Shelton,

2001; Beiderman, 1998; Kendall, 1998; Wells et al., 2000a). Escape from the negative

impact of ADHD on family functioning often is not found until the child with ADHD

matures and moves out of the home (Kendall, 1998).

Information regarding differences in the quality and difficulties of the parent-child

relationship experienced in raising children with ADHD compared to raising typical

children, although acknowledged in the ADHD literature, is limited (Barkley, 1995;

Bussing et al., Fisher, 1990; Hinshaw et al., 2000; Mash & Johnston, 1983; Kashdan et

al., 2004). A greater understanding of the differences in the parenting experience in

raising a typical child and the child with ADHD from the parent's perspective and

experiences is needed. Knowledge of the challenges faced by parents of children with

ADHD is essential for healthcare professionals to develop appropriate, supportive, and

effective interventions in the treatment of families impacted by ADHD.

Purpose of the Study

The purpose of this study is to describe parents' experiences raising a child with

ADHD and examine how those experiences differ from parents who raise a child without

ADHD. Variables of interest include: (a) parent's perceptions of the impact of their

child's behavior on family functioning, (b) parenting stress, (c) effort required to

complete daily routines and, (d) affective (emotional) tone of family interactions during

4

morning routines at home between families of children with and without ADHD. The

goal of this study is to gain a greater understanding of the experience of raising a child

with ADHD and its effects on family functioning from the perspective of the parent. It is

hoped that through greater understanding, health care professionals will develop

interventions that not only decrease the negative effects of the ADHD symptoms on

families, but will also be perceived as supportive and practical for parents.

Conceptual Framework

Parenting behaviors have profound ramifications on the child's development (Bull

& Whelan, 2006; Jacobson, 1999; Landy, Miller-Loncar, Smith, & Swankm 2002;

Melnick & Hinshaw, 2000; Wamboldt & Wamboldt, 2000). In healthy family

functioning positive parental power is present encouraging autonomy and independence

among its members. Within the family system, the foundation for socialization, emotion

regulation, and cognitive processing for children develop, and are maintained,

influencing the child's development of adaptive behaviors and functioning (Anastopoulos

& Shelton, 2001, Barkley, 1995; Cox & Paley, 1997; Everett & Volgy Everett, 1999;

Hinshaw, 1992; Johnston & Ohan, 2005; Karreman, vanTuijl, vanAken, & DeKovic,

2006; Melnick & Hinshaw, 2000). However, neither parents nor children exist in a

vacuum; they exist within a family system in which members interact and influence one

another (Barkley, 1995; 2000a; Bugental & Johnston, 2000; Cox & Paley, 1997; Kendall

& Shelton, 2003; Minuchin, 1998). Individual family members are necessarily

interdependent, exerting a continuous and reciprocal influence on one another (Cox &

Paley, 1997; Minuchin, 1998; Patterson, 1982). Through repeated family interactions

boundaries are set and family members learn thejules for relating to one another.

5

Effective family functioning reflects clear and flexible boundaries with parental guidance

in determining the functioning level of family experiences.

Studies indicate social interactions within the family system of children with

ADHD are often characterized by parent and child conflict, family discord, and stress

with more parental negative reactivity and less positive responsivity than found in

families of a child without ADHD (Barkley, 1995; Bull & Whelan, 2006; Fischer, 1990;

Wells et al., 2000a). Often the child and the family become defined by the ADHD

behaviors. The following quote from a mother of an ADHD child participating in the

investigator's pilot work (Strahm, 2001) reflects how ADHD effects family functioning:

"(ADHD) It has an incredible impact on the family. Well, my husband and him argue a lot. They are a lot alike. Confrontational attitudes, one after another. And, I always have to step in and remind him (husband) that he (child) is a little boy. And I have to talk to (child) and explain. I'm the mediator between the two of them. And I have to go between my daughter and my son and it (ADHD) runs the household. It's how we run it".

Studies indicate negative social interactions within the family system of children

with ADHD results in a greater level of stress than found in families of a child without

ADHD (Barkley, 1995; Bussing et al., 2003; Fischer, 1990; Wells et al., 2000a). Within

the family with a child with ADHD stress often evolves from interactional conflicts

surrounding the behaviors of the child and the parent's response and intervention

(Barkley, 1995; Breen & Barkley, 1988; Bussing et al., 2003; Epstein et al., 2000).

Research findings indicate parents with children who have ADHD respond in a more

negative and commanding or directive manner than do parents of typical children

(Anderson, Hinshaw, & Simmel, 1994; Hinshaw et al., 2000; Hechtman 1996; Hoza et

al., 2000; Johnston, 1996). These parental behaviors often reflect the parents' attempt to

6

maintain control while intervening with or preventing the negative behaviors exhibited by

their child (Hechtman, 1996; Johnston & Ohan, 2005). For example one mother

describing her morning experience with her child expressed:

"Getting him up in the morning and I push. Starting gently for (J) to get ready. I tell him (J) you have to do this (J), (J), (J). Even though the last couple of weeks have improved. It's not been so bad, still it's (J) come on, (J) do this. You have to tell him more than once. Rarely do you have to say it only once, usually numerous like two or three times. No you've got to do this. Then we're off to school, child care, wherever we're going ..." (Strahm, 2001).

Conversely, parents may try to avoid conflict when faced with the child's defiant

and oppositional behaviors by withdrawing and not following through on directives. One

mother shared:

"I have to be on his tail all the time. I try to keep him very organized. I think I probably do too much for him. It's easier for me to do it than to get him to do it. I have to like physically have to walk him to the bathroom and get him in there. And then once he is in the bathroom he does what he is supposed to do. He does other things also, my bathroom is always a disaster." This mother went on to share that she cleans up after her child in the bathroom to avoid conflict (Strahm, 2001).

Parental withdrawal of directives results in the development of negative

reinforcement for the child's behavior (Dishion, Patterson, & Kavanagh, 1992; Jacobs.

1990; Patterson, 1982; Patterson, Reid, Jones & Conger, 1975). A pattern of reciprocal

coercion comes about as both the child and the parent learn to control each other through

reactive behaviors (aversive means) when interacting (Jacobson, 1999). Patterson's

coercion theory (1982) is significant in understanding the development and maintenance

of a pattern of reciprocal coercion between parent and child.

Patterson theorizes that in aversive social interactions, as with a parent and child,

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coercive events are serially dependent and reciprocally deterministic. Each event

(interaction) is both a "reaction" to prior events (attack) and a "stimulus" (counter attack)

for the events to follow, with both persons using coercive behaviors to maximize a short-

term payoff (turning off the attacks or demands of another). For example, in this

coercive cycle, if a child does not comply with a parental directive and responds with

aversive behaviors (yelling, crying, or whining) and the parent responds by withdrawing

the command; the child learns to repeat or escalate his behavior as a means to terminate

the parent's commands. However, if the parent responds to their child's noncompliance

with further coercive behaviors, (increased yelling, threats or spanking) and the child

completes the task as directed, and the parent is reinforced for coercive behavior (See

figure 1).

The Coercive Cycle/ Negative Reinforcement Traps

Parental Directive: Turn off TV and Do homework (A)

X I Child ignores, cries, whines, tantrums

Negative behavior (CA)

Parent frustration increases and parent yells. Negative behavior (CA)

Child's negative behavior escalates (CA)

Child reinforced for negative behavior (O)

1 Child ignores, cries, whines, tantrums

Negative behavior (CA)

Parent Frustration increases and parent yells. Negative behavior (CA)

I Child complies and performs required task j

Parent reinforced for negative behavior (O)

figure 1. Negative Reinforcement Traps: A=Attack, CA=Counter Attack, 0= Outcome

When continued over time an increase in the rate and intensity of these coercive

behaviors results in the development of negative reinforcement traps (Anderson et al.,

1994; Patterson, 1982; Patterson et al., 1975). Moreover, negative reinforcement traps

are highly correlated with childhood behavior problems such: (1) oppositional defiant

disorder, (2) conduct disorders and (3) antisocial behaviors all of which have a high

comorbidity rate among children with ADHD (Biederman et al., 1991; Biederman et al..

1996; Gresham et al., 1998; Hinshaw et al., 2000; Holmes, Slaughter, & Kashani, 2001;

9

Jensen, et al., 1997; MacDonald & Achenbach, 1996; Patterson, 1982; Patterson et al.,

1975; Patterson, DeGarmo, & Knutson, 2000; Schachar & Tannock, 1995). This study

will explore the interactions of children with ADHD and their families. Consistent with

Patterson's theory, this study will explore how the communication and verbal interchange

between parents and children with ADHD during routine interactions can produce,

maintain and escalate conflict during family interactions.

Significance of the Study

Research related to the difficulties involved in parenting a child with ADHD is

growing (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993; Barkley, 1995; Bull &

Whelan , 2006; Hechtman, 1996; Peris & Hinshaw, 2003; Weinberg, 1999). However,

relatively little research on how ADHD affects parental and family functioning, stress,

and the quality of daily family interactions exists. Currently, as with early ADHD

research, the focus of research studies remains on outcomes of teaching parents

parenting and behavior management skills, and the effect and management of medical

interventions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993; Arnold et el., 1997;

Kendall, 1998; Kendall, Leo, Perrin, & Hatton, 2005; MTA Cooperative Group, 1999b,

2006; Odom, 1996; Wamboldt & Wamboldt, 2000).

Within the research and clinical communities it is recognized that the burden of

responsibility for the attainment, implementation and daily maintenance of appropriate

treatments for the child with ADHD lies with their parents (Hoza et al., 2000; Kendall,

1997; Lifford, Harold, & Thapar, 2008; Wells et al., 2000a). The parents' ability to

implement and maintain an outlined course of treatment is often assumed by clinicians

who believe they know what families with ADHD children need. Treatment interventions

10

are often suggested by clinicians based on parental report and clinical observation of

family interaction. Too often the interpretation of the environment in which parents or

families must operate is impaired by clinical setting and parent and child expectations of

how to interact in the clinical setting (Kendall, 1997). Even with active parental

involvement, the negative outcomes of treatment (no decrease in the child's negative

behaviors, continued family conflict) remain associated with the parents' inability to

carry out the treatment regime and ineffective parenting skills (Kendall; Wells et al.,

2000a). In order to understand the experience of parenting the child with ADHD, a

greater understanding is needed of why motivated parents are still having difficulty in

carrying out the treatment regime in the home setting and how raising a child with

ADHD influences family life.

Summary

The experience of parenting a child to adulthood is one of the most rewarding

challenges yet, but it also carries the greatest responsibilities parents will encounter

throughout their life (Jacobson, 1999). When faced with difficulties parents may seek

guidance and support from a healthcare professional. A collaborative relationship

between the healthcare professional and parent must be established in which the parent is

empowered and recognized as a partner in their child's treatment (Kendall, 1998). Only

through a collaborative approach in which mutual goals and strategies are identified will

the appropriate care for the child with ADHD occur.

The goal of this study is to increase the understanding of the daily challenges

faced by parents of children with ADHD, through the exploration of the dynamics of the

relationship between the parent and the child with ADHD from the parents' perception

11

and observations. It is hoped this knowledge will provide valuable insight for health care

professionals as they develop treatment strategies empowering parents to productively

intervene and care for their child with ADHD.

Research Hypotheses:

Consistent with the purpose and conceptual framework of this study the

hypotheses are as follows:

1) Parents of children with ADHD will report lower quality of family

functioning than parents with typical children.

2) The parent identified as having the responsibility of assisting the child with

ADHD in getting ready for the day will report lower quality of family

functioning than reported by their spouse.

3) Parents of children with ADHD will report a higher level of parental stress

than parents of typical children.

4) The parent identified as having the responsibility of assisting the child with

ADHD in getting ready for the day will report a higher level of parental stress

than parents of typical children.

5) The negative tone of family interactions during morning routines will be

greater in families of children with ADHD than in families with typical

children.

6) The positive tone of family interactions during morning routines will be

greater in families with typical children than in families with ADHD.

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7) Children with ADHD will require a longer time period to complete morning

tasks than typical children.

8) Children with ADHD will complete fewer morning tasks alone, requiring

more parental effort than typical children.

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Chapter II: Literature Review

Introduction

Attention Deficit Hyperactivity Disorder (ADHD) was first recognized by clinical

scientists nearly 100 years ago and often described in the early literature pertaining to

childhood psychiatric disorders as hyperactivity or hyperkinetic behavior (Anastopoulos

& Shelton, 2001; Barkley, 1995, 2002; Tannock, 1998). Today ADHD is recognized as a

disorder made up of different subtypes which are characterized by an individual's

presenting symptoms including: (1) ADHD: Combined type, (2) ADHD: Predominantly

Inattentive Type, and (3) ADHD: Predominantly Hyperactive-Impulsive Type (APA,

1994, 2000). Over the past twenty years researchers exploring ADHD have produced

much information related to the diagnoses, medical treatment and behavioral

management of ADHD. Currently the exact etiology of ADHD remains elusive

encumbered by many plausible explanations from genetic, neurobiological and

psychological (cognitive behavioral) research findings. In addition these research

approaches have resulted in a variety of suggested treatment interventions to manage

disruptive ADHD symptomology and resultant parental stress (APA, 1994, 2000;

Barkley, 1998; Bussing et al., 2003; Hankin, Wright, & Gephart, 2001; Pillow, Pelham,

Hoza, Molina & Stultz, 1998). To aid in understanding the causative factors and

challenges in the management and treatment of ADHD, an overview of the genetic,

neurobiological and cognitive behavioral approaches and suggested treatment approaches

follow.

Genetic Approach

Over the past 30 years genetic research related to ADHD has focused on the

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familiality (i.e. whether the disorder run in families) and the heritability of the disorder.

Findings indicate the diagnosis of ADHD is five times greater among relatives of persons

with ADHD than among families of children without ADHD, with a greater concordance

of ADHD diagnosis found between first degree relatives (Biederman et al., 1992; Epstein

et al., 2006; Tannock, 1998; Weiss, Hechtman, & Weiss, 2000). For example, the risk of

both the parent and child being diagnosed with ADHD is feasibly as high as 50%

(Biederman et al., 1992; Farone, Beiderman, Mennin, Gershon, & Tsuang, 1996; Epstein,

et al., 2000; Hudziak, Derks, Altofff, Rettew, & Boomsa, 2005; Hechtman, 1996).

Siblings of children with ADHD are 5% -7 % more likely to develop ADHD than

children of families not affected by ADHD. Notably, identical twins of children with

ADHD are estimated to have a 55 % - 92 % chance of also developing the disorder

(Barkley, 1998, 2006). In a longitudinal study performed by Farone, et al., (1996)

findings at a four year follow-up indicate, siblings at risk for ADHD had significant

elevations of behavioral, mood and anxiety disorders, and greater functional impairment,

supporting a hypothesis related to the familial transmission of ADHD. Although many

studies indicate a genetic contribution to the development of ADHD, exactly which genes

are implicated in the development of ADHD remains unknown.

Neurobiological Approach

Neurobiological research exploded during the 1990's, a time designated as the

"Decade of the Brain" by the U.S. Congress (Cody & Hynd, 1999). The ability to

visualize and sometimes measure brain function and brain chemistry emerged for

researchers and clinicians during this decade using Magnetic Resonance Imaging (MRI)

and Positron Emission Tomographic (PET) imaging. These advances in brain imaging

15

have allowed researchers to discover that persons exhibiting ADHD behaviors have a

reduced size and impairment of the functioning of the right prefrontal cortex of the brain

(Anastopoulos & Shelton, 2001; Barkley, 1998; Baving, Laucht, & Schmidt, 2000;

Castellanos, 1997, 2000; Seidman et al., 1997; Silberstein et al , 1998; Tannock, 1998;

Yeo et al., 2003). Impaired functioning of the right prefrontal area of the brain is

associated with significantly greater difficulties with behavior inhibition (impulsivity)

and self- regulation (emotional and behavioral self-control or executive functions),

cardinal symptoms associated with ADHD (Kerns, Mclnerney, & Wilde, 2001;

Schachar, Mota, Logan, Tannock, & Klim, 2000). These findings add support to research

that posits ADHD stems from impairment in the neurological based inhibition

(delay/stop) system (Anastopoulos & Shelton, 2001; Barkley, 1998; Banaschewski et al.,

2005; Baving, et al., 2000; Castellanos, 2000; Serene, Manzar, Szeszko, & Kumara,

2007; Woods & Ploof, 1997). A deficiency in inhibition has been further linked to the

disruption of the neuropsychological abilities or executive functions and goal directed

motor response (Barkley, 1997; Serene et al., 2001). Neurobiological research continues

to expand, providing more information on the role of brain functioning in ADHD.

However, neurobiological findings are not deterministic in the diagnosis of ADHD. The

diagnosis of ADHD remains dependent on reports of adults (e.g. parents, teachers)

observing the child's behaviors (behavior inhibition) while interacting with the child

(Castellanos, 1997; Epstein et al., 2000).

Cognitive -Behavioral Approaches

Executive functions have been described as control processes that allow a person

to initiate, sustain, inhibit or stop a response; such functions give one the ability to

16

prioritize, organize and strategize thoughts and actions (Barkley, 1997,2000b;

Castellanos, 1997). Russell Barkley, a recognized expert on ADHD, uses the hybrid

model of executive functions to describe how a deficient inhibition system affects the

implementation of executive function and consequent self- regulation in ADHD. This

hybrid model combines Bronowski's theory (as cited in Barkley, 1997a) on the

uniqueness of human language and Fuster's theory (as cited in Barkley, 1997a) on the

neuropsychological functions of the prefrontal cortex. Central to both theories is how

behavioral inhibition permits the skillful execution of four executive functions needed for

goal-directed behavior. According to Barkley these executive functions include: (a)

working memory, (b) internalization of speech (self-talk), (c) self-regulation of affect-

motivation -arousal, and (d) reconstitution (the ability to synthesize and create multiple

alternative responses to an environmental event).

Within this model it is assumed that executive functions not only allow one to

delay a response but delay the decision to respond. For the child with ADHD, the

inability to delay a decision to respond can be observed in their impulsive reaction to an

environmental event. In typical children, the inhibition system (functional) allows them

the time to assess their options and employ problem solving skills, especially using

hindsight and forethought before responding to an internal or external environmental

event. In ADHD, the deficit capacity in the inhibition system to delay a response to an

immediate environmental event makes self regulation more difficult (Barkley, 2000;

Kerns et al., 2001: Kerns & Price, 2001; Schachar et al., 2000; Smith, Taylor, Rogers,

Newman, & Rubia, 2002). As a result, although children with ADHD may want to stop a

behavior or obey the parent's command, the neurological impairment (dysfunction) of the

17

inhibition system thwarts these children's efforts by not allowing them the time to think

about the consequences of their response (forethought), draw upon past experiences

(hindsight), or to stop their behavioral response to an environmental event in the

proponent response (impulse) (Barkley, 2000b; Delaney 2006).

For example, picture a child facing a target where the goal is to hit the bull's eye.

In this case the bull's eye is a positive appropriate response to an environmental event.

Whereas a typical child might take the time to focus and plan how to hit the bull's eye, a

child with ADHD would likely shoot for the bull's eye without focus or a plan (Barkley,

2000b; Zeigler- Dendy, 1999). (See figure 2)

Figure 2. Decision Making and Dysfunction of the Inhibition System

Typical child aiming at a target:

READY-* AIM -> FIRE

Focus on target (Awareness of event) —>delay —• process options —> goal directed action READY AIM FIRE

(self-regulation) (reasoned response) Child with ADHD aiming at a target:

READY -> FIRE - • AIM ->• OOPS

See the target (Awareness of the event) —»• action —» aware of action —> I didn't mean too

READY FIRE AIM reaction/consequences

Adapted from Zeigler- Dendy (1999)

Upon diagnosis, regardless of the suspected cause, the focus of treatment for

ADHD is on the management of the disruptive behaviors exhibited by the child. The

most common and researched treatment strategies for the management of ADHD include

psychopharmacologic treatment, psychosocial or behavioral interventions (Abikoff et al.,

18

2004; Barkley, 2000b; Hechtman et al., 2004; Hinshaw et al., 2000; Hoagwood, Kelleher,

Feil & Comer, 2000).

Diagnostic Developments and Treatment: Pharmacotherapy

The most commonly reported estimated prevalence of ADHD among school age

children is 3% and 5 %. However, prevalence rates vary greatly dependent on the

population assessed (ex: clinic or community) and the research methodology used (MTA,

1999a). During the 1990s, revision of the diagnostic guidelines set by the American

Psychiatric Association (1994) for the diagnosis of ADHD allowed for the identification

of many previously undiagnosed children, in particular girls and preschool children, thus

impacting the reported prevalence rates (Lahey et al., 1994; Ludwikowski & DeValk,

1998). Robinson et al, (1999) explored data from the National Ambulatory Medical Care

Survey for the years 1990 through 1995 for children aged 5 to 18 years to discern trends

in the prevalence and pharmacotherapy treatment of ADHD. Their findings indicated

that during these years, the number of office based visits documenting an ADHD

diagnosis rose 149 %. At the same time, the population adjusted rate of patients

prescribed stimulants increased at a rate of 213%.

Concurrent with the increase of the number of children being diagnosed with

ADHD an increase in the amount psychotropic medications prescribed for children has

occurred. As indicated in figure 2 above between 1990 and 1995 prescriptions for

stimulants such as methylphenidate (Ritalin) increased 213 %. To some extent the large

increase in the number of prescriptions for stimulants during this period can be

attributed to (a) increased duration of treatment, (b) prescriptions being written for more

girls, children and adolescents and inattentive youth, (c) an improved public image of

19

stimulant medication treatment, and (d) an easing of the standard for dispensing

stimulants (Boles, Lynch, & DeBar, 2001; NIH, 2000; Hack & Chow, 2001; Greenhill et

al., 2002; Hoagwood et al., 2000; MTA, 1999). Since 1995, prescriptions for stimulant

medications have not increased at the level observed between 1990 and 1995. However,

the numbers of children being treated for ADHD have steadily increased, with an

estimated one-third of the prescriptions for psychostimulant medications being written for

newly diagnosed persons (Jensen, 2000; Olfson, 2003; Swanson et al., 1998).

Epidemiology studies from the Centers for Disease Control and Prevention (CDC)

(Pastor & Rueben, 2002), reported that an estimated 7 % of children (1,623,000 children)

nationwide between the ages of 6 and 11 years of age have ADHD with or without a

learning disability (LD). Of that group, 54% of the children without learning disabilities

and 61% of children with ADHD and LD had used prescription drugs of some kind on a

regular basis though not necessarily psychostimulants.

Stimulant medications, most commonly methylphenidate, have been the most

effective, prescribed, and researched medication for the treatment of ADHD (Abikoff et

al., 2004; Barkley, 1998: Boles et al., 2001; Greenhill et al., 2002; MTA Cooperative

Group, 2006; Riddle, Kastelic & Frosch, 2001). Used to treat ADHD since 1937, the

short-term efficacy of stimulants is well established, documented in hundreds of studies

inclusive of thousands of children (Pelham, Whelan, & Chronis, 1999). Reportedly, 70%

to 80% of children with ADHD have a positive response to stimulant medication

exhibiting increased cooperation and less hyperactivity during social functioning such as

structured parent-child interactions, or interactions with other adults and peers (Buitelaar,

Van Der Gag, Swabb-Barneveld, & Kuiper, 1995; Greenhill et al., 2002; Pelham et al.,

20 *

1998). Adherence to the prescribed treatment regime is key to maintaining the positive

benefits of stimulant medication and adherence is dependent on the cooperation of the

parents, children, school personnel, and others involved in the child's care (Ohan &

Johnston, 2000).

Today, it is common for children with ADHD to have their treatment regimes

managed by their primary care physicians (75.4%) than by psychiatrists (12.4%).

(Angold, Erkanli, Egger, & Costello, 2000; Greenhill et.al., 2002, Hoagwood et al., 2000;

Zito et al.1999). Given a limited pool of funds available for treatment, even for insured

children, the numbers of treatment visits have decreased (Greenhill et al., 2000; Jensen,

2000; Olfson, Gameroff, Marcus, & Jensen, 2003). Although practice parameters related

to the assessment and treatments for ADHD exist, many practitioners are unaware of the

guidelines or fail to follow the suggested guidelines (American Academy of Pediatrics,

2000;Williams Klinepeter, Palmes, Pulley, & Foy, 2004). Research indicates that

treatment may prove inadequate with limited follow-up, that children may be "under-

treated" by receiving less than adequate doses, or intermittent rather than consistent

medication due to practitioner's lack of knowledge or judgment (Angold et al., 2000;

Hoagwood et al., 2000; Jensen, 2000, MTA Cooperative Group, 1999). To this end, the

importance of parental involvement, knowledge of ADHD and ADHD management

becomes crucial for the appropriate and effective treatment for their child.

Although the effectiveness and safety of stimulant medication is well

documented, the use of stimulants for treating children with ADHD remains

controversial. In approximately 20-30 % of children receiving stimulant medication,

negative side effects occur and can include mood disturbance, weight loss, or even

21

cardiovascular disturbance, necessitating discontinuance of the medication. Although the

majority of children treated with stimulant medication are reported to have improved

behaviors, their behaviors remain more challenging for parents than the behaviors of

typical children the same age (Pelham et al., 1998; Riddle et al., 2001; Swanson et al.,

1995).

Parental concerns regarding stimulant medication being the right treatment

intervention for their child are prevalent. These concerns have been fueled by media

attention to the potential abuse of stimulants, the social stigma of medicating children for

their behavior and reports of sudden deaths among children receiving stimulants

(Barkley, 2002; Furman, 2007; Gutsell et al., 1999; Hinshaw, 2005; Horst & Hendren,

2005; Jensen, Kettle, & Roper, 1999; Knight, 2007). As a result of these concerns,

researchers report that often parents terminate stimulant treatment within the first few

months after initiation, and many without consulting the prescribing physician or

returning for follow-up care (Bussing et al., 2003; Hansen & Hansen, 2006; Pelham et al.,

1998; Shute, Locy, & Pasternek, 2000). In addition, the parent's decision to discontinue

medication may be influenced by the child's resistance to taking their medication, the

parents' hesitation to add one more struggle to their day, and the diminishing beneficial

effects of certain stimulant medications by the time the child comes home after school

(Hack & Chow, 2001; Pelham et al., 1998; Jensen, 2000).

Many children with ADHD receive short acting psychostimulants to manage the

negative symptomology of ADHD. However advances in the development of extended

release or long acting stimulant medication have allowed for the management of ADHD

symptoms for approximately 8-12 hours a day (Horst & Hendren, 2005; Wilens,

Biederman, Lemer, 2004). Similarly as with short acting stimulants, morning

administration of long acting stimulants is suggested by the guidelines, allowing for the

management of the ADHD symptoms during the child's school day. Preliminary

findings related to the use of short or long acting stimulants to manage negative ADHD

symptomology indicates (a) the child demonstrates improved attention for longer periods

of time, (b) the child's school day is less disrupted (no trips to the school office or nurse

for medication) when compared to multiple dosing with short-term medications, (c)

reduced self-consciousness of the child (embarrassment of being seen as different), and

(d) better control of negative ADHD symptomology during after-school activities

(socialization) and the transition to home and homework time (Pelham et.al, 2001;

Wilens et al, 2003). Although improvements have been made in the pharmacological

management of ADHD, medication may not be the answer for all children or parents

affected by ADHD. When the use of medication becomes unacceptable for a parent or

additional support for the child's behavioral problems are needed, educational programs

related to understanding ADHD, and improving parenting skills and communication

(Hoza et al, 2000; Oosterlaan & Sargent, 1998; Pelham et al., 1998; Wells et al., 2000b).

Behavioral Treatment

The effectiveness of parent training programs (PTP) for modifying parenting

practices by educating parents in parenting skills and communication to bring about

positive behavioral changes in the child are well documented in the literature related to

parenting and childrearing (Anastopoulos & Shelton, 2001; Barkley, 2000, 1997,1995;

Miller & Prinz, 1990; Spitzer, Webster- Stratton, & Hollingsworth, 1991; Strayhorn &

Wiedman, 1989; Tucker, Gross, Fogg, Delaney & Lapporte, 1998; Weinberg, 1999).

23

The focus of PTP is to teach the parent how to apply social learning strategies (clear

instructions, differential attention, praise, time out) when interacting with their child and

avoid coercive interchanges (Spitzer, Webster- Stratton, & Hollingsworth, 1991;

Weinberg, 1999). Facilitators within the parent training program encourage parents to

utilize learned strategies in naturally occurring opportunities to teach the child social

skills and self-evaluation techniques to use when interacting with others in a social

setting (Barkley, 1995; Patterson, 1982; Wells et al., 2000). Evidence of the positive

effect of parent training on parental interventions with children's difficult behaviors has

been a catalyst in PTP being suggested for parents of children with ADHD (Barkley,

1997, 1995, Hinshaw et. al., 2000, Hoza et al., 2000).

Parents of children with ADHD who participate in and apply the principles of

PTP report an increase in parental confidence, a decrease in parental stress and improved

family functioning as their child's social functioning improves and disruptive behaviors

decrease. Behavioral interventions empower the parent to become an interactive

participant in providing an environment for change and not just the administrator of

medication (Jensen et al., 1999). However, behavioral interventions are difficult to enact

when children cannot attend to the adults' instructions (Hoza et al., 2000). Additionally,

recent research findings suggest that behavioral interventions may be more effective

when combined with psychostimulant medication (Arnold et al., 1997; Barkley, 2000;

Hechtman et al., 2004; Hinshaw et al., 2000; Wells et al , 2000a).

Combined Treatment: Stimulant and Parent Training Programs

Studies conducted by the Collaborative Multimodal Treatment Study of Children

with Attention Deficit Hyperactivity Disorder, the MTA, have comparatively explored

24

medication, management, intensive behavioral treatment and the use of combined

behavioral treatment and stimulant medication as interventions in treating ADHD

(Abikoff et al , 2004; Arnold et al., 1997; Barkley, 2000; Conner et al., 2001; Hinshaw et

al, 2000; MTA, 1999b, 2006; Wells, et al., 2000). The combined approach is currently

recommended as the best treatment approach for ADHD based on MTA studies

comparing the efficiency and efficacy of the above mentioned treatment approaches

(Conner et al , 2001; NIH, 1999; Melnik & Hinshaw, 2000; Hechtman et al., 2004

Hinshaw, Klien, & Abikoff, 1998; Hoza et al., 2000; Jensen & Cooper, 2002; Jensen et

al., 2005; McClellan & Werry, 2003; MTA, 1999a).

Using a combined treatment approach allows for both short term and long term

benefits of medication and behavioral management to enhance the action of the other.

Stimulant medication can produce an immediate response of improved child behavior

within 30 minutes of administration. Researchers have found that when the child's

behavior is brought under control with stimulant medication, the parental response to the

child reflects diminished negativity, stress and controlling behaviors (Barkley, 1997a;

Edwards, 2002; Odom, 1996; Wells et al., 2000b). The combination of medication and

PTP and the resulting positive environment (medication induced) allows for more

effective implementation and ongoing application of encouraging parenting practices

being learned through PTP, improved parent-child interactions, and decreased parenting

stress (Barkley, 1995; Greenhill, et al., 2002; Hoza et al., 2000; Jensen, 2000; Kolko,

1999; MTA, 1998; Wells et al., 2000a). The combined approach, although appropriate

and widely used in the clinical setting, is not always an option for parents of children

with ADHD within the community realm.

25

For families with the limitations of: (a) time, (b) access to psychiatric services, or

(c) financial means to manage their child's ADHD symptomology, the use of stimulant

medication alone can be helpful in improving family functioning and decreasing parental

stress.

Stress and Parenting Stress

Over the past decade, there has been a great deal of research related to human

behavioral and emotional responses to stress (Harrison & Sofronoff, 2002). Stress has

been defined as demands (conditions of harm, threat, or challenges) that are appraised (or

perceived) as exceeding or taxing a person's resources (Monat & Lazarus, 1991).

Stressors or sources of stress are additive and can be intensified by concurrent stressors

such as personal and other's expectations of performance (Abidin, 1995; Crnic, Acevedo

& Bornstein, 1990; Ostberg & Hagekull, 2000). Expectations by parents related to their

parental role and the parent-child relationship can be greatly affected by child negative

behavioral problems, resulting in parenting stress (Anastopoulos & Shelton, 2001, Baker,

1994, Barkley, 1995). Parenting stress is distinctive from other forms of stress in that it

is specific to the demands and the experiences of everyday life faced by parents in raising

their children (Crnic, Acevedo, & Bornstein, 1995; Ostberg & Hegekull, 2000).

Managing family schedules, running extra errands for children, attending to their

child's physical, emotional, and behavioral development are daily demands associated

with parenting. Often parents meet these daily demands by putting aside their personal

needs. These everyday demands and expectations have been identified as "parenting

daily hassles" (Crnic & Acevedo, 1998). For many parents, daily hassles alone do not

produce significant amounts of stress. However, collectively and over time daily hassles

26

can cause a great deal of stress and disharmony in the parent-child relationship. Patterson

(1982) proposes that stress in the form of everyday experiences (hassles) can serve as a

negative change agent setting the stage for the development of coercive behaviors

between the parent and child (Crnic & Greenberg, 1990).

Research demonstrates that even among families of typical children, mothers

reporting multiple daily hassles respond more irritably to their children, resulting in the

child responding with increased aversive behavior (Belsky, Crnic & Gable, 1995; Crnic,

Acevedo, & Bornstein, 1995; Patterson, 1982). According to Patterson, the significant

difference between typical families and families of children with behavioral disorders for

the development of a persistent coercive family environment may be in the frequency,

duration and the maintenance reactions of aversive behaviors by those involved. In

distressed families, family members become skilled in aversive behaviors through the

practice of coercive communication. Characteristics of practiced coercers, whether adults

or children include: (a) more frequent extended coercive interchanges, (b) interchanges of

longer durations, and (c) higher aversive intensity. Specific determinants of parenting

stress remain unclear. However, Richard Abidin, author of the Parenting Stress Index

(1990; 1995), identifies three major source domains of stressors: (a) child characteristics,

(b) parent characteristics, and (c) situational and demographic life stress. These domains

will be explored in this study to aid in understanding stress related to the parenting

experience of raising a child with ADHD.

The Child with ADHD and Parenting Stress

Parents of children with ADHD experience parenting stress at a much higher rate

than parents of typical children (Anastopoulos & Shelton, 2001; Baker, 1994; Barkley,

27

1995; Harrsion & Sofronoff, 2002; MTA, 2000; Wells et al., 2000a). Contributing to this

high rate of parental stress are the child's negative behaviors, and the parent's attributions

regarding the cause of the child's behavior. In addition, research indicates that prolonged

exposure to difficult children results in dysfunctional parental responses (Crnic, Acevedo,

& Bornstein, 1995; Hinshaw, 2000; Kendall & Shelton, 2003; Patterson, 1982; Patterson

et al., 1975). Children with ADHD can be difficult children. Children with ADHD are

less compliant to their parents' instructions, less likely to remain on task, and display

more negative behavior than typical children their age (Anastopoulos& Shelton, 2001;

Barkley, 1997; 1995; Donenberg & Baker, 1993; Wells et al , 2000b).

Research indicates parents of children with ADHD often shape and maintain their

child's overtly defiant and aggressive behavior through negative and punitive

interchanges and failure to follow through on limits set for their child's behavior

(Anderson, Hinshaw, & Simmel, 1994; Snyder, Cramer, Afrank, & Patterson, 2005).

Researchers have reported that parents of children with ADHD give fewer rewards for

social and compliant behaviors to their children when compared with parents of typical

children (Barkley, 1997; 1995; Johnston, 1996; Wells et al., 2000). Patterson (1982)

proposes that parents use aversive events at such a high rate because punishment

produces immediate short term changes in the child's behaviors. In addition, the response

to aversive parental interventions by children with ADHD may also explain an added

challenge of raising children with ADHD. The challenge lies in the child's response to

stimulation. Jacobs (1999) states, "No matter how aversive being yelled at or spanked

might be for a normal child, the stimulus value of these experiences may outweigh the

adverse quality for a child with ADHD. Children with ADHD crave stimulation...

28

making it a situation he is more likely to be drawn to and seek out" (p.53).

Following a child's negative behavior the parent's perception of the behavior

influences the parent's emotional reaction and response (Bugetal & Johnston, 2000;

Gross, 1995; Johnston, Chen, & Ohan, 2006; Johnston & Ohan, 2005 ). Parents tend to

become more upset if a child's negative behaviors are perceived as intentional and the

parent believes the child has the knowledge required to behave differently (Bussing et al.,

2000, Hoza et. al., 2000). For the parent of the child with ADHD, the perceived intention

of the child's negative behaviors is complicated by the variability of the child's behavior

performance. There may be days, weeks and even months when their child will do well

academically and socially, lending to the parent's belief that the child is in control of their

behavior (Kendall, 1998). However, the recurrent emergence of the negative behaviors

by the child reveals the persistent and pervasive nature of ADHD and the need for

concentrated parental intervention.

According to Patterson's theory of coercion parent-child interactions are

determinant to maladaptive parent, child and family functioning and the development of

negative reinforcement traps. He further believes the maintenance of coercive patterns of

relating can be changed through parent education. However, the variability in the child's

behavior, the pervasiveness of ADHD symptomology on family functioning and the

resulting stressful nature of raising a child with ADHD may be so great that parents find

they are unable to change the aversive patterns of interaction.

Summary

Currently much of ADHD literature focuses on the impact of the disorder on the

parent, child and family functioning. However the vast majority of studies are based on

parental report and clinical observation. Unknown is what behaviors in the unobserved

interchange between the parent and child in the home setting may complicate the parent-

child relationship, family functioning and treatment management. Often when standard

treatment has been ineffective for reducing ADHD symptoms, clinicians often conclude

that parents are not following through with treatment recommendations (Kendall, 1998).

Parents, however, tend to believe that clinicians do not understand the challenges of

raising a child with ADHD. This study will examine the parents' perception of their

child's behavior on family functioning, perceived parental stress, and characteristics of

family interactions during morning routines in the home setting. It is hoped a greater

understanding of the experience of raising a child with ADHD, will allow health

professionals to develop interventions that not only decrease the negative effects of

ADHD symptoms on families, but will be perceived as supportive and practical for

parents.

30

Chapter III: Methodology

Introduction

This chapter presents the research design, setting, sample, variables of interest and

measures, and procedures. Data collection procedures for the current study are described.

Conceptual and operational definitions of the variables of interest and the psychometric

properties of the outcome measures are presented. A description of the data analysis

techniques used is presented for each hypothesis.

Design

This study used a descriptive comparative design to describe parents' experiences

raising a child with ADHD and examine how those experiences differ from parents

raising a child without ADHD. The two groups of families were compared on their

responses to questionnaires on impact of their child's behavior on the family, parenting

stress, and the effort to complete morning routines over two consecutive week day

mornings. In addition, affective tone of family interactions were compared from audio

taped interactions of the families collected over the same consecutive week day

mornings.

Setting and Sample

The target population for this study are families of children with ADHD and

families of children without ADHD from northwest Indiana and the greater Chicago area.

This study used a convenience sampling design. An attempt to match target children from

participating families by age and gender was made by the investigator to increase

comparability of the two groups. However, the ADHD group participants were

represented by more male children than female children (see Results Section, table 4).

31

Participants representing families of children with ADHD for this study were

volunteers referred to the investigator from health care professionals, local parents'

support groups and advertisements (see Appendix). Participants representing families of

typical children were volunteers referred by colleagues of the investigator and

advertisements. The participants' interest in the study, their willingness to share their

experiences, and their meeting inclusion criteria were determinants of selection for the

study.

Data for analysis in this study were obtained from parents who were married and

living with the target child. Based on the review of the literature and the author's pilot

study, the effect of the comparison between the two groups was expected to be large.

Assuming a large effect size, (gamma =.70), a power of .70, and an alpha value of .05 a

sample size of 50 families was targeted.

Family inclusion Criteria

Participants in this study included families in which the parents were living with the

target child. Both parents had to consent to participate in the study and sign the informed

consent form. Children participating in the study were asked to give assent.

Parents completed the Family Impact Questionnaire (FIQ) and the Parenting

Stress Index: Short form (PSI:SF). The Daily Routine and Response Worksheet (DRW),

which measures parenting effort, was completed by the parent identified during the initial

interview as having the more consistent responsibility of assisting the child in getting

ready for the day. To maintain consistency, the same parent completed the DRW on two

consecutive days.

32

Child Inclusion Criteria

Male and female children 6-12 years old were selected for inclusion in this study.

Research indicates that by 6-12 years of age, ADHD symptomolgy becomes troublesome

and pervasive often requiring parental intervention to manage social, emotional and

behavioral challenges (Anastopoulos & Shelton, 2001; APA, 1994,2000; Barkley, 1998,

1995; Everett & Volgy Everett, 1999; Hinshaw, 1992; MTA, 2000). Female children are

included in this study to reflect changes in the 1994 APA diagnostic guidelines which

allow for a greater number of girls to be diagnosed with ADHD. However, the prevalence

of ADHD among male children remains greater than for female children with a ratio of 3

to 1. It was therefore expected that more boys than girls would be recruited into this

study (APA, 1994,2000; Barkley, 1997b; Peris & Hinshaw, 2003).

For the purpose of this study, children with ADHD were defined as children

assessed by a licensed healthcare provider meeting the diagnostic criteria for ADHD set

forth by the APA (1994). The validity of the child's diagnosis was based on parent report.

Information related to the child's diagnosis and other family history were collected

during an interview conducted by the investigator. All children with ADHD enrolled in

this study were receiving medications for ADHD symptomology.

"Typical" children are defined as children with no known medical or psychiatric

disabilities or disorders based on parent report. Information related to a child's

classification as a typical child was obtained from an initial interview with the parents

and target child conducted by the investigator.

Exclusion Criteria

Children with known traumatic brain injury, mental retardation, or other

33

diagnosed affective disorder were not eligible to participate in this study because the

symptoms associated with these disorders could veil or amplify the symptoms of ADHD.

Children with physical disabilities or illnesses which require medical and parental

intervention for the management of the child's impairment were not eligible for this

study.

Variables and Measures

All parents were interviewed by the investigator, using the ADHD Assessment/

Interview Guide (see Appendix) by the investigator prior to the completion of

questionnaires and the audio taping of the week day morning interactions. Using this

interview guide the investigator gathered family demographic data, information related to

the child's medical, psychological, and academic history, and family history of ADHD.

This assessment was conducted one time with both parents present after parent consent

and child assent was obtained.

The variables of interest in this study included: (a) parent's perceptions of the

impact of their child's behavior on family functioning, (b) parenting stress, (c) effort

required to complete daily routines, and (d) affective tone of family interactions during

morning routines. Both parents completed the Family Impact Questionnaire and The

Parenting Stress Index-Short Form. One parent completed the Daily Routine and

Response Worksheet on two consecutive weekday mornings. Finally, family interactions

were audio taped during the same two consecutive mornings and coded for affective tone

using the Audio Affect Rating Scale (ARS) by raters blind to the group assignment. Each

of these variables is described in greater detail below.

34

Variables of Interest and Measures (See attached forms)

VARIABLES

1. Family/child history and demographics

2. Family Impact

3. Parenting Stress

4. Parenting Effort

5. Affective Tone of family interactions during morning routines

MEASURES

1. ADHD Assessment/ Interview Guide: Investigator (2001)

2. Family Impact Questionnaire: (FIQ) Donenberg & Baker (1993)

3. Parenting Stress Index: Short Form Abidinfl995)

4. Daily Routine and Response Worksheet Investigator (2001)

5. Audio-tapes: Audio Affect Rating Scale (ARS): Investigator (2003)

INFORMANT

Both Parents

Both Parents

Both Parents

Parent responsible for managing morning routine

Coders

ADMINSTRATIONS

Once Prior to taping

Once Prior to taping

Once Prior to taping

Twice during or after each morning taping

Every 15 minutes duration of taped experience on two mornings

Family Impact

All participating parents completed the Family Impact Questionnaire (FIQ) which

measures the parents' perception of the impact of their child's behavior on family

functioning (Donenberg & Baker, 1993; Touliatos, Perlmutter, Berry, & Straus, 2001).

The FIQ (50 items) inquires about the child's impact on the family compared with other

children his/her age using a 4 point response format (0=not at all to 3= very much). The

FIQ is unique in that it also measures domains not often addressed by other measures of

family stress such as the positive impact of the child. The FIQ includes six subscales

validated by factor analysis: (a) child's impact on family social life, (b) negative feelings

about parenting, (c) positive feelings about parenting, (d) financial impact of the child, (e)

child's impact on the marriage, and (f) child's impact on siblings (if present) (Donenberg

& Baker, 1993).

35

Examples if items on the FIQ include: (a) I participate less in community

activities because of my child's behaviors (Social Impact), (b) My child brings out

feelings of frustration and anger more than other children their age (Negative Feelings

Toward Parenting), (c) I enjoy the time I spend with my child more ( Positive Feelings

Toward Parenting), (d) The cost of raising my child is more than other children their age

(Financial Impact), (e) My spouse and I disagree about how to raise this child or other

children (Impact on Marriage), and (f) The other children in the family feel more

embarrassed by his/her behavior (Impact on Siblings) (Baker, Heller, & Henker, 2000).

The test-retest reliability of the impact scores reported by Donenberg and Baker,

(1993) over a two year period were reported as: (a) negative impact on social life .72, (b)

negative feelings about parenting .60, (c) positive feelings about parenting .69, (d)

financial impact .43, (e) impact on marriage .71, (f) impact on siblings .59. An intrascale

correlation between negative impact on social life and feelings about parenting was r=.73.

The subscales of negative impact on social life and negative feelings about parenting

correlate highly with the child related stress factor on the Parenting Stress Index r=.69

(Donenberg & Baker, 1993; Baker, Heller, & Henker, 2000). Mothers' and fathers'

impact scores were analyzed separately. It is hypothesized that the parent identified as

having the responsibility of assisting the child with ADHD in getting ready for the day

will report lower quality of family functioning than will the spouse.

Parenting Stress

The Parenting Stress Index Short-Form (PSI-SF) is a 36 item derivative of the full

length Parenting Stress Index test (120 items). The PSI-SF was created to meet the

expressed need of researchers for a brief measure of parental stress (Abidin, 1995).

36

The short form contains 36 items which capture the primary components of the parent-

child system: focusing on the parent, child and their interaction. The PSI-SF was

developed through a series of replicated factor analyses resulting in a three factor

solutions. The three subscales (factors) of the PSI-SF are identified as: (a) parental

distress (PD), (b) parent-child dysfunctional interaction (PCDI), and (c) difficult child

(DC). Components of the three subscales of this instrument are consistent with concepts

presented in Patterson's coercive theory related to parent-child interaction.

The PD subscale measures the distress a parent is experiencing in his or her role

as a parent (Abidin, 1995; Mash & Johnston, 1983). The PCDI measures parent's

perceptions of whether the child meets their expectations and whether interactions with

the child reinforce the parents' ability to positively interact with their child. The focus of

the DC subscale centers on the degree to which the parent perceives the child's behaviors

as easy or difficult to manage (Abidin, 1990, Breen & Barkley, 1988).

The PSI-SF subscales have shown to have high internal consistency (alpha=.87

PD, alpha=.80 PCDI, and alpha= .85 DC). Test-retest reliabilities have also been high

(r's= .68-.85). In this study, sub-scale and total scores from all three subscales were used.

All participating parents completed the PSI-SF although mother and father data

were analyzed separately. It was hypothesized that parents of children with ADHD will

have significantly higher PSI-SF scores than parents of typical children. It is also

hypothesized that among parents in the ADHD group, the parent identified as having the

primary responsibility for helping the child with ADHD prepare for school in the

mornings would have higher stress than the spouse not having primary responsibility for

helping the child.

37

Parenting Effort

It was hypothesized that children with ADHD would require a longer time period

and more parental effort and interventions to complete morning tasks than required with

typical children. The parental effort required to help the child complete daily routines was

measured using the Daily Routine and Response Worksheet (DRW) developed by the

investigator. The morning routine experience was selected for data collection because (a)

it is a time when many tasks must be accomplished in a limited amount of time, (b)

completing morning routines requires the child's focused attention and (c) it may require

parental direction to ensure the tasks are completed in time for school. These qualities of

the morning routines increase the likelihood of coercive interchanges between the parent

and child. Consistent with Patterson's theory of coercion, parents interviewed by the

investigator during a pilot study identified the morning routine experience as a time when

most family members were in attendance, a routine pattern of functioning was

established, and a time when negative ADHD behaviors such as unpredictable behaviors,

defiance, and intense negative responses would be notably present (Strahm, 2001)

Areas of daily functioning of the child assessed on the DRW include: (a) six items

related to personal care (toileting, bathing, etc.), (b) three items related to behaviors

during meal time (cooperation, ability to start and finish a meal), and (c) six items related

to school readiness (school bag ready, clothing ready, and appropriate). The DRW

morning task form was completed by the same parent, identified as having primary

responsibility, on two consecutive weekday mornings.

Two variables of interest were measured from the DRW: time to complete

morning tasks and effort required to complete morning tasks. Time to complete morning

38

tasks and effort were measured by the parent documenting the time their child; (a)

awakens, (b) gets out of bed, and (c) left parental supervision. The amount of time

between each of these three events were obtained and compared across groups. Time

medication was administered to children in the ADHD groups was also obtained.

"Effort required to complete morning tasks" was rated by the parent for each task

on the DRW using 4 point response scale; (a) task completed alone (score=l), (b) task

completed with some help (score=2), (c) task completed with much help (score=3), or (d)

child unable to complete the task (score=4). Parents also had the option to rate a task as

"not applicable" if the task is not one they typically include in the morning routine. In

addition, parents assessed the overall quality of the morning compared to other mornings

using a 5 point response scale: (a) how the morning compared to other mornings spent

with the child (much better to much worse), (b) the amount of time the child spent getting

ready for school compared to a typical morning (much less to much more), (c) the

amount of parental effort spent to ready the child for school as compared to a typical

morning (much less to much more), (d) parent's mood upon awakening, before

interaction with the child (very good to very poor), and (e) how the parent would rate

his/her mood by the time the child left for school (much better to much worse). The

purpose of these questions was to determine whether the two mornings assessed in this

study were typical of other mornings in the life of this family.

The DRW was developed by the investigator because no instrument was found

which measured the amount of time or parental effort required to complete morning

routines. Following initial development of the DRW, the instrument was reviewed for

content and ease of administration by two experts in parenting and psychiatric mental

health nursing and two parents. The parents included a parent of a typical child and a

parent of a child with ADHD. Based on their feedback, modifications were made to the

DRW. The modified version of the DRW is the version used in this study.

Affective Tone

It was hypothesized that families of children with ADHD would demonstrate a

more negative affect and a less positive affect than families of typical children. Audio

tapes of the morning routines of families with typical children and families of children

with ADHD were collected on two consecutive weekday mornings and used to capture

the affective tone of family interactions. For this study, affective tone relates to the

general atmosphere of the morning experience and the sounds perceived from the

outward manifestations of the participants' feelings or emotions during interactions

(Anderson, 1994, Hinshaw et al., 2000).

Since no rating scales for measuring positive and negative affect from audio taped

interactions were found, the investigator developed the Audio Affect Rating Scale (ARS)

(see Appendix). The ARS was reviewed by three researchers experienced in assessing

parent and child interactions and instrument development. An observation coding system

that included categories for measuring affect from observed families interactions

developed by Patterson (1982) was used to guide the development of the ARS. Examples

of categories used are (a) approval, (b) command, positive/negative, (c) comply/non-

comply, (d) negativism, (e) normative, (f) laugh, whine, yell, or cry. The ARS measures

the presence and extent of positive and negative interchange present during the recorded

morning interactions. The level and pervasiveness of positive and negative affect during

family interactions determines the intensity of the affective tone. However, intensity

should not be confused with the level of loudness of the interaction. For example a

parent-child interaction can be highly intense and negative without the parent's or child's

voice being raised if the content of the interchange is negative (threatening or

demeaning). A neutral anchor is incorporated into the ARS as a means of measuring the

times when silence or little interchange was noted within the family interchange on the

recorded mornings.

Audio tapes of two morning experiences were coded every 15 minutes by raters,

blind to study hypotheses on the degree of positive and negative affective tone. Based on

the investigator's pilot work, it was estimated that each morning interaction would last

approximately one hour. To determine the frequency and percentage of positive,

negative, and neutral affective tones present in the morning experience, the 15 minute

interactions from the two consecutive mornings were tallied and divided by the total

number of 15 minute interactions per group.

Raters were baccalaureate junior level students having had completed a basic

psychology course and blind to study hypotheses. Raters received $8 per coded

audiotape. To establish an estimate of interrater reliability, persons responsible for rating

the audio tapes were trained by the investigator using audio tapes of parents and children

not in this study. Once the reviewers demonstrated 80% agreement with the investigator

in coding practice parent-child and family interaction audio tapes using the ARS, training

was complete. Interrater agreement was estimated on 20% (n= 8) of the current study

audio tapes with 92 % agreement.

41

Procedures

To recruit participants the investigator contacted area healthcare professionals,

and parent support groups, and advertised by posted flyers, newspaper advertisements

and local radio announcements. All advertising materials included the investigator's

contact phone number which included password protected voicemail that could only be

accessed by the investigator. During the initial phone contact, the purpose of the study,

eligibility criteria, and participant expectations were discussed. If the individual family

met inclusion criteria and the parents wished to participate, a meeting was arranged in

their home. Participation in this study was voluntary. Participants retained the right to

withdraw from the study at any time.

Initial home visit

At the scheduled initial home meeting the investigator reviewed the purpose of

the study, informed consent and assent procedures, and expectations of participation with

the participants. The investigator was responsible for obtaining informed consent and the

child's assent. Upon receiving verbal and written informed consent and assent the

investigator completed the family assessment and interview. Forms to be completed by

the participants and the process for doing so were reviewed with the participants by the

investigator (see Appendix). Participants in the study were expected to complete the

following activities: (a) family assessment by interview (b) Family Impact Questionnaire

(completed by both parents), (c) Parenting Stress Index-Short Form (completed by both

parents), and (d) the Daily Routine Worksheet (completed by the parent responsible for

managing the morning experience). During the interview, parents were asked to identify

the one parent who is typically responsible for assisting the child during morning

routines. The identified parent was the parent designated as the one to complete the DRW

on the two consecutive mornings to collect data related to time and parent effort required

to complete the morning tasks.

In addition, participants were asked to audio tape two consecutive week day

morning family interactions in the home. The two morning family interactions audio

taped were the same two mornings the DRW was completed. Instructions for audio

taping the morning experience were reviewed with the designated parent and written

guidelines were provided. A tour of the home with the parent was to determine the best

placement for the audio tape recorder to capture family interactions. Before leaving the

home, the investigator asked the parent responsible for taping the morning experience to

demonstrate that they were able to: (a) correctly record using the tape recorder, (b)

monitor tape movement, (c) anticipate when the tape will run out, and (d) correctly

change tapes. All families received a kit that included the tape recorder, three 60-minute

audio tapes and two extra AA batteries (See Appendix for description and contents of

taping kit).

Audio-taping the Morning Routine

After the first morning in which the family interaction was audio taped but before

the second audio taped morning, the investigator met with consenting parents to pick up

the first audio tape and completed DRW form. During this study, it was found that many

parents requested to receive phone contact with the investigator rather than another in

home visit. This request was made by the families due to their busy family work and

activity schedules. Difficulties the parent had with the audio taping procedures or with

completing the DRW form and any questions they had about the audio tape or DRW

43

form completion for the second morning were discussed during the follow-up contact.

The second day of data collection was treated in like manner. All participants received

both office and cell phone contact numbers of the investigator to call if difficulties or

questions arose. Upon successful completion of the research measures and audio taped

interactions, each family received $50.

Benefits

It was not expected that parents would receive a direct benefit from participation

in this study. However, parents who requested additional support received referrals as

appropriate.

The goal of this study is to increase understanding of the daily challenges faced

by parents of children with ADHD. It is hoped this knowledge will provide valuable

insight for healthcare professionals as they develop treatment strategies empowering

parents to productively intervene and care for their child with ADHD.

Confidentiality

Approval for this study was obtained from the Institutional Review Board at Rush

University Medical Center; ORA # 04032501.

The identities of participants were protected by the investigator and a random

numerical code used to identify all data. Raters of the audio tapes had access only to code

numbers. Review of the occurred in an area that provides privacy for the rater and access

to the primary investigator.

44

Data Analysis

Hypothesis # 1: Parents of children with ADHD will report lower quality of family

functioning than parents with typical children.

This hypothesis was addressed using the FIQ. The FIQ (50 items) inquires about

the child's impact on the family compared with other children his/her age using a 4 point

response format (0=not at all, to 3= very much) (Baker, Heller & Henker, 2000;

Touliatos, Perlmutter, Straus, & Holden, 2001). Parental responses to the FIQ from

parents with children with ADHD and parents of typical children were compared using a

t-test for independent groups on the individual subscales and total score of the FIQ's six

domains.

Hypothesis # 2: The parent identified as having the responsibility of assisting the

child with ADHD in getting ready for the day will report lower quality of family

functioning than reported by their spouse.

This hypothesis was addressed using the FIQ. Responses to the FIQ from both

parents of a child with ADHD were compared using t-test for independent groups on the

individual subscales and total score of the FIQ's six domains.

Hypothesis # 3: Parents of children with ADHD will report a higher level of parental

stress than parents of typical children.

This hypothesis was addressed using the Parenting Stress Index-Short Form

(PSI-SF). The PSI-SF addresses parenting stress in the following domains: a) Defensive

Responding, b) Parental Distress (PD), c) Parent-Child Dysfunctional Interactions

(P-CDI) and, d) Difficult Child (DC). The sum of PD, P-CDI and DC are combined to

create the Total Stress Score or the overall level of parenting stress. For this study, the

individual subscales and Total Stress Scores of parents of typical children and parents

with children with ADHD were compared using a t-test for independent groups.

Hypothesis #4: The parent identified as having the responsibility of assisting the

child with ADHD in getting ready for the day will report a higher level of parental

stress than his or her spouse

This hypothesis was addressed using the Parenting Stress Index-Short Form

(PSI-SF). The individual subscales and Total Stress Scores of parents of a child with

ADHD will be compared using a t-test for independent groups.

Hypothesis # 5: The negative tone of family interactions during morning routines

will be greater in families during morning routines of children with ADHD than

families with typical children.

This hypothesis was addressed by comparing audio taped family interactions

during the morning experience. The family interactions were assessed every 15minutes

using the Audio Affect Rating Scale (ARS) as to the presence of negative affective tones.

Negative affect rating using all 15 minute interactions were compared across groups

using chi-square.

Hypothesis # 6: The positive tone of family interactions during morning routines

will be greater in families with typical children, than in families with ADHD.

This hypothesis was addressed by comparing audio taped family interactions

during the morning experience. The family interactions were assessed every 15minutes

using the Audio Affect Rating Scale (ARS) as to the presence of positive affective tones.

Positive affect rating using all 15 minute interactions were compared across groups using

chi-square.

46

Hypothesis #7: Children with ADHD will require a longer period of time to

complete morning tasks than typical children.

This hypothesis was addressed by the measurement of time it takes the child to

complete morning tasks. Data relating time for the child to complete morning tasks was

gathered from the Daily Routine Worksheet (DRW). Parents documented the time the

child awoke and the time the child left the parent's supervision. A t-test was used to

compare the group means for time from awakening to leaving parental supervision.

Hypothesis # 8: Children with ADHD will complete fewer morning tasks alone,

requiring more parental effort than typical children.

This hypothesis was addressed using the DRW. Parents used the DRW to

document daily morning tasks attempted by the child. Domains of the morning task

include: a) Personal care, b) Breakfast, and c) Readiness for school. How the child

completed the task was identified by the parent as being met: a) alone, b) with some help,

c) with much help, or d) not completed. The number of morning tasks and the level of

parental effort required to ready for the day for the two groups were analyzed using

chi-square.

CHAPTER IV: RESULTS

Introduction

This chapter describes the sample and results examining differences between

families with a child with Attention Deficit Hyperactivity Disorder (ADHD) group and

families with a child without any known psychiatric disorder ("typical group"). Results

are presented by hypothesis or research question and characteristics of (1) typical family

or (2) family of a child with ADHD.

Description of the Sample

The sample consisted of 23 families from northwest Indiana and the greater

Chicago area. Families participating in the study consisted of 12 families with typical

children and 11 families with children with ADHD. Participants were volunteers

recruited by radio and newspaper advertisements (see Appendix), through investigator

contact, or referral from colleagues of the investigator. The number of participants and

the method of recruitment for the two groups are summarized in Table 1. Data show that

families with a child with ADHD were more likely to be recruited from radio and print

advertisements and families of typical children were more likely to be recruited through

direct contact with the investigator, X (2, N= 23) = 3.72, p = 0.16 (See Table 1).

48

Table 1

Recruitment Method

Recruitment Method

Referral Advertisement Investigator Contact

Family Type Number % Number % Number %

Typical 2 16.6 2 16.6 8 66.6

ADHD 3 27.2 5 45.4 3 27.2

Note, n = 23 Typical group n = 12, ADHD group n= 11.

The mothers ranged in age from 26-51 years (M=38.5 years, SD = 5.80). The

mean ages of mothers in the study were 41.6 years for the typical group and 35.3 for the

ADHD group. The mothers in the typical group were significantly older than mothers in

the ADHD group (p = .008). All mothers in the sample were Caucasian and were

educated at the high school level; 68 % (n=15) attended or graduated from college. No

significant difference by employment status was noted between the two groups. Three

mothers in the typical group reported were not employed outside the home. In contrast all

of the mothers in the ADHD group worked at least part-time outside the home (See Table

2).

49

Table 2

Demographic Characteristics of the Mothers

Family Group

Typical Group ADHD Group

Variable Number % Number %

Education

High School 3

College 8

Employment

Full time 5

Part time 3

Not employed 3

Note. Typical group n= 11 ADHD group n= 11

Father age ranged from 31-58 years (M=40.8 years, SD = 7.47). There were no

significant differences in father age between the two groups. All participating fathers

were Caucasian. All received at least a high school diploma; 63 % (n=14) attended or

graduated from college. All but one father in the typical group worked full time and no

fathers from either group were unemployed (See Table 3).

27 4 37

73 7 64

45 4 36

27 7 64

27 0 0

50

Table 3

Demographic Characteristics of the Fathers

Family Group

Typical Group ADHD Group

Variable Number % Number %

Education

High School 2

College 9

Employment

Fulltime 10

Part time 1

Not Employed 0

Note. Typical group n=ll ADHD group n=ll

Marital and Parental Status

Ninety-two percent of the parents in the typical group were married with one

single divorced mother and one widowed father in this group. All of the parents in the

typical group had married only once. All parents in the ADHD group were married with

three fathers being the step-father of the target child. All of the mothers in the ADHD

group were the biological parent.

The children participating in this study ranged in age 6-12 years with a mean age

of 9.1 years of age (SD =1.9). Of the 12 children in the typical group, half were male. In

contrast, 10 of the 11 children with ADHD were male. The high number of male children

within the ADHD group is reflective of more male than female children in this age group

18 6 55

82 5 45

90 11 100

09 0 0

51

being diagnosed with ADHD. Research shows that male to female ratios are between 4:1

and 9:1 (Anastopoulos & Shelton, 2001; APA, 1994; Homer et al, 2000) (See Table 4).

Table 4

Demographic Characteristics of the Children

Variable

Gender

Male

Female

Health Issues

Medical

Psychiatric/ Behavioral

Typical Group

Number

6

6

4

0

%

50

50

33

0

Family Group

ADHD Group

Number %

9 91

1 9

4 36

2 18

Note. Typical group n=l 1 ADHD group n= 11

Medical and Psychological Diagnoses of the Children

Thirty-three percent (n=4) of the children in the typical group had identified

medical diagnoses, three with asthma and one with recurrent sinus infections. No

psychiatric illnesses were identified among children in the typical group. Comparatively,

fifty four percent (n=6) of the children with ADHD had a secondary medical or

psychiatric diagnoses that had been identified or were being investigated. Two children

with ADHD had poor vision with one child having legal blindness, one child had an

auditory processing impairment and diabetes, and one child had anxiety and asthma. In

addition, two children with ADHD were being further evaluated for the psychiatric

52

disorders of "Autism" and "Asperger's" respectively per parent report.

ADHD Diagnosis

Diagnosis of ADHD was based on the parent's report of the child being assessed

by a licensed healthcare provider and meeting the diagnostic criteria outlined in the

Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) (APA, 2004). The

reported age of the children when diagnosed with ADHD ranged from age 4 years to 11

years with a mean of 6.7 years. The length of time from the ADHD diagnosis to the

family's participation in this study ranged from 1 to 7 years (M = 2.9 years). All children

with ADHD were receiving medications to manage ADHD symptomolgy including:

Concerta (n=3), Focilin (n=l), Strattera (n=3), Adderal XR (n= 3), and Risperdal (n=T).

Reported Pregnancy or Birth Issues

Pregnancy or birth issues that may impact the child's health were explored

through parent interview at the initial visit. Three mothers (27%) in the typical group

were identified as having pregnancy or birth issues: (a) difficult labor, (b) induced labor,

(c) breast cancer and steroid use. Six mothers (54%) in the ADHD group reported the

following pregnancy or birth issues: (a) Spotting at 20 weeks, fetal distress and C-section,

(b) pre-eclampsia, (c) premature birth (37 weeks), pre-eclampsia, (d) C-section (large

baby), (e) hypertension (mid-term), and (f) maternal kidney failure in the seventh month

of pregnancy. According to parental report, three children (typical group n= 1; ADHD

group n=2) were reported to have had a minor head injury ("bump") without physical or

psychological impact on the child.

Identified Parent Support

All parent participants in the study identified friends and family as their support

53

systems in raising their children. All children in the typical group were all placed in the

regular classroom setting with no special education or enhancement services noted.

Seven (72%) children with ADHD were placed in the regular classroom setting and three

(27%) children with ADHD attended supplemental or special education classes as part of

their school day. No educational support persons were identified by the parents of the

typical children.

Six (54%) parents of children with ADHD reported their child's teacher as their

first line of support in the school system. Remedial services such as: (a) special

education, (b) school counselors, (c) speech therapists and, (d) classroom aides were

identified as additional resources enhancing the educational experience for their child.

Test for Significance of Hypotheses Addressing the Quality of Family Functioninfi

Hypothesis # 1: Parents of children with ADHD will report lower quality of family

functioning than parents with typical children.

Parents rated the impact the target child had on the family compared with other

children his/her age using the Family Impact Questionnaire (FIQ) (Baker, Heller, &

Henker, 2000; Donenberg & Baker, 1993). Parents completed the FIQ using a 4 point

response format to rate the child's impact from "not at all" to "very much" in six domains

including: (a) social life, (b) negative parenting, (c) positive parenting, (d) financial

impact, (e) martial impact, and (f) sibling impact. Higher scores on the FIQ indicate the

parent perceived a greater impact of the child and their behavior on family functioning in

the defined domains. The t-test for independent groups revealed that the total mean scores

for the six domains of the typical families and the families of children with ADHD were

not significantly different. However, there were significant differences on other

54

individual FIQ subscales. Specifically, parents of children with ADHD rated that child as

having a significantly greater impact on their: (a) social life (b) negative feelings toward

parenting (c) finances and (d) siblings. Effect size based on Cohen's d, indicate that mean

difference on these four subscales were large (defined as d >.8) (Munro, 1997, Coe,

2002) (See Table 5). Parents in the typical group did not rate their children as having a

greater negative impact than did parents in the ADHD group on any of the FIQ subscales.

These findings suggest that parents of children with ADHD reported that their children's

behavior had more negative effects on their social life, their feelings about parenting,

their finances, and the siblings of the child than the parents in the typical group (See table

5).

Table 5

Family Impact by Diagnostic Group

Variable

Social Life

Negative Feelings Parenting

Positive Feelings Parenting

Finance

Marriage

Siblings

Sum of Variables

Typical

M

3.22

7.17

14.17

2.77

5.35

3.49

5.80

Familv Group

Group

SD

0.70

0.38

0.64

0.32

0.07

0.88

3.33

ADHD

M

6.36

10.50

13.90

3.87

5.54

6.16

8.70

Group

SD

1.15

0.70

1.67

0.31

2.05

0.23

4.29

p-value

0.04

0.01

0.42

0.03

0.45

0.02

0.08

Effect Size

3.33

5.99

0.21

3.48

0.13

4.06

0.74

Note. n=44 Higher score indicates greater perceived impact on family functioning. Effect sizes based on Cohen's d

55

Hypothesis #2: The parent identified as having the responsibility of assisting the child

with ADHD in getting ready for the day will report lower quality of family functioning

than reported by their spouse.

All of the mothers of children with ADHD were identified as the parent having

the responsibility of assisting the child in getting ready for the day. Mothers and fathers

of children with ADHD were compared using a t-test for independent groups to examine

differences on the FIQ total score and the FIQ subscales. Analysis for the total mean

scores for mothers of children with ADHD (M= 7.52) and fathers of children with ADHD

(M=8.15) were not significantly different (t = .292, df=10, p > .05= .38). However,

fathers reported that the child and the child's behavior had a greater impact on the marital

relationship than did the mothers (fathers M= 7.05, SD= 4.00; mothers M=4.09, SD=

2.73, p=.03, d = .85). There were no other differences in family impact between mothers

and fathers in this group (See table 6).

56

Table 6

Mother and Father Perceived Impact on Family Functioning for ADHD Group

Variable

Social Life

Negative Feeling

Positive Feelings

Finances

Marriage

Siblings

Sum of Variables

Mother

M

5.54

10.00

15.09

4.09

4.09

6.33

7.52

SD

3.64

4.42

4.41

3.11

2.73

3.96

4.29

Father

M

7.18

11.00

12.72

5.00

7.00

6.00

8.15

SD

4.19

4.87

4.07

2.79

4.00

1.87

3.02

p-value

0.12

0.31

0.10

0.23

0.03

0.41

0.38

Effect Size

0.41

0.21

0.55

0.30

0.85

0.10

0.17

Note. n= 22 Higher score indicates greater perceived impact family functioning. Effect sizes based on Cohen's d

Parenting Stress-

Hypothesis # 3: Parents of children with ADHD will report a higher level of parental

stress than parents of typical children.

Parenting stress was measured using the Parenting Stress Index-Short Form (PSI-

SF). The PSI-SF addresses parenting stress in the following domains: a) Parental

Distress (PD), b) Parent-Child Dysfunctional Interactions (P-CDI), and, c) Difficult Child

(DC).

The sum of PD, P-CDI and DC are combined to create the Total Stress Score or

the overall level of parenting stress. The Subscales and total Stress Scores of parents of

typical children and parents with children with ADHD were compared using a t-test for

57

independent groups. Parents in the typical group reported less stress, than parents in the

ADHD group on the following domains: (a) Parental distress (M= 22.36, SD= 7.06), (b)

Parent-Child dysfunctional interactions (M=20.18, SD= 6.13), (c) Difficult child (M=

27.81, SD= 12.49), and (d) Total Stress (M=71.31, SD= 22.37). Therefore, hypothesis #3

was supported with parents of children with ADHD reporting higher levels of parental

stress than parents of typical children. The PSI-SF means and standard deviations for the

two groups are listed in Table 7.

Table 7

Parenting Stress Scores by Group

Variable

Parenting Distress (PD)

Parent- Child Dysfunctional Interaction (PCDI)

Difficult Child (DC)

Total Stress

Familv Group

Typical Group

M

22.36

20.18

27.81

71.31

SD

7.09

6.13

12.49

22.67

ADHD

M

27.00

24.27

36.40

88.77

Group

SD

7.25

6.85

7.93

18.50

p-value

0.01

0.02

0.004

0.004

Effect Size

.64

.63

.81

.84

Note, n =44. Means *p < .05. Higher score indicates greater perceived stress. Effect sizes based on Cohen's d

Hypothesis #4: The parent identified as having the responsibility of assisting the child

with ADHD in getting ready for the day will report a higher level of parental stress than

their spouse.

This hypothesis was addressed using the Parenting Stress Index-Short Form (PSI-

58

SF )The Total Stress Scores of a child with ADHD were compared using a t-test for

independent groups. The mothers in the ADHD group were self identified as the parent

having the responsibility for assisting the child with getting ready for the day. There

were no significant differences between mothers' and fathers' stress scores. The PSI-SF

means and standard deviations for the mothers and fathers of children with ADHD are

listed in Table 8.

Table 8

Parents Mean Stress Scores ADHD Group

Variable

Parenting Distress (PD)

Parent-Child Dysfunctional Interaction (PCDI)

Difficult Child (DC)

Total Stress

Parent Mother

M

28.18

23.00

36.36

89.18

SD

7.48

7.46

8.17

19.64

Type Father

M SD

25.81 7.18

25.54 6.26

36.45 8.07

88.36 18.23

p-value Effect Size

0.22

0.19

0.48

0.46

0.32

0.36

0.01

0.04

Note. N=22. Results 1-tailed t-test for Equality of Means Higher scores indicates greater perceived stress.

Affective tone

Hypotheses #5 and # 6 address the affective tone of the morning experience of the

family groups. These hypotheses were addressed by comparing audio taped family

interactions obtained from the sample families during morning experiences on two

consecutive days. Family interactions during the morning experience were audio taped by

the parent assisting the child to ready for the day. The morning experience consisted of

59

the morning routine from the time the child awakened until the child left the parent's

presence to attend school.

Coders blind to group assignment assessed and rated the taped family interactions

every 15 minutes using the Audio Affect Rating Scale (ARS). The ARS measured the

presence of: (a) neutral, (b) low positive, (c) positive, (d) high positive, (e) low negative,

(f) negative or, (g) high negative tones of the family's verbal interaction. A neutral

anchor is incorporated into the ARS as a means of measuring those times when silence or

minimal interchange occur on the recordings. Five coders were trained by the

investigator using tapes from volunteers from families of typical and children with

ADHD who did not participate in the study. When the coders demonstrated at least an

80% agreement with the investigator in coding the practice tapes training was complete.

Investigator review of 20 % (n=9) of the current coded study tapes resulted in a 92 %

interrater agreement.

The typical group recorded 67 15 minute taped interactions and the ADHD group

recorded 52 15 minute taped interactions. Both groups averaged 3 15 minute taped

interactions each recorded morning.

Hypothesis # 5: The negative tone of family interactions during morning routines will be

greater for families in the ADHD group, than for families in the typical group

There were no differences between the families in the typical group and the

families in the ADHD group, on total scores of affective tones during the morning

interactions. X (1, N=58) = .064, p = 0.79. The frequencies and percent of negative and

neutral affective tones during morning routines by group are reported in Table 9.

60

Table 9

Frequencies and Percent of Negative and Neutral Affective Tones During Morning Routine in Groups

Family Groups

Variable

Typical Group

Frequency

ADHD Group

Frequency '

Low Negative

Negative

High Negative

Total Negative

Neutral

12

2

0

14

15

17.9

2.9

0

20.8

22.3

11

5

0

15

14

21.1

9.6

0

30.7

26.9

Note. Typical families n=l2 Days recorded n= 23 Number of 15 minute intervals recorded n= 67. ADHD families n= 11 Days

recorded n= 16 Number of 15 minute intervals recorded n=52.

Hypothesis # 6: The positive tone of family interactions during morning routines will be

greater in families with typical children, than in families of children with ADHD.

Analysis of the data indicates no significant difference was found between groups

in relation to the positive tone of family interactions during morning routines. X (1,

N=60) = 27, p = 0.87 (See tablelO).

61

Table 10

Frequencies and Percent of Positive Affective Tones During Morning Routine in Groups

Family Groups

Typical Group ADHD Group

Variable Frequency % Frequency %

Low Positive 23 34.3 12 23.0

Positive 13 19.4 9 17.3

High Positive 2 2.9 1 1.9

Total Positive 38 56.7 22 42.3

Note. Typical families n=12 Days recorded n= 23 Number of 15 minute intervals recorded n= 67. ADHD families n= 11 Days

recorded n= 16 Number of 15 minute intervals recorded n = 52.

A chi square test was performed using the data outlined in Tables 9 and 10 to

assess whether a relationship exists between the two groups based on the variables: (a)

total positive (typical group n= 38; ADHD group n= 22) interactions, (b) total negative

interactions (typical group n=14; ADHD group n= 16) or, (c) total neutral interactions

(typical group n= 15; ADHD group n= 14. There were no differences noted between the

two groups in the frequencies of positive, negative, or neutral interventions during

morning routines X2 (1, N=l 19) = 2.58, p = 0.27 (See Tables 9 &10).

Morning Tasks

Hypothesis #7: "Children with ADHD will require a longer period of time to complete

morning tasks than will typical children."

This hypothesis was addressed using maternal reports of the time it took the child

to complete morning tasks on the Daily Routine Worksheet (DRW). Mothers documented

62

on the DRW the time the child awoke until the time the child left their supervision.

Within that time period, mothers documented (in minutes) the amount of time it took the

child to awaken and get out of bed and complete all of the routines needed to get ready

for school. A t-test was used to compare the mean number of minutes to complete these

tasks between the two groups. No differences were found in the number of minutes

needed to complete morning tasks between children in the typical group (M = 58.4, SD =

41.6) and the ADHD group (M = 68.5, SD = 45.0) (t= -.712 df=36 p= .48).

Morning Tasks Completed

Hypothesis # 8: Children with ADHD will complete fewer morning; tasks alone,

requiring more parental effort than typical children.

Using the DRW, parents documented which of 15 daily morning tasks were

completed by the child. The number of tasks to be completed during the individual's

morning experience is dependent on: (a) the parent's expectations, (b) family routine, (c)

weather conditions, and (d) the activities of the day. Domains of the morning task

include: (a) Personal care, (b) Breakfast, and (c) Readiness for school/day. Parental effort

required to assist in completing each of the morning tasks was rated by the parent along

the following scale: (a) completed alone, (b) completed with some help, (c) completed

with much help, (d) not completed, or (e) not an expected task.

The number of expected tasks to be completed during the morning experience was

301 tasks for children in the typical group and 225 tasks for children in the ADHD group.

Children in the typical group completed 97.3 % (n= 294) of the 301 expected tasks and

children in the ADHD group completed 100% of the expected morning tasks. A chi-

square test was performed and no significant differences between the two groups in the

63

square test was performed and no significant differences between the two groups in the

number of morning tasks completed were noted, Xz (1, N= 2) = 0.163, p = 0.68.

To assess degree of parental effort needed to get the child ready for the day,

expected tasks were identified by the parent as being completed alone or completed with

help. Children in the typical group completed 83.7 % of the expected morning tasks alone

and children in the ADHD group completed 88% of the expected morning tasks alone. A

chi-square test was performed and no significant differences between the two groups in

the number of morning tasks completed and the level of parental effort required to get the

child ready for the day were noted, X2 (1, N= 20) = 0.578, p = 0.44.

In addition to organizing the morning tasks, mothers expressed the importance of

managing the timing of medication administration. Mothers of children with ADHD

expressed the importance of managing the timing of medication administration to their

child as to benefit the child's school and socializing experience. Timing of the medication

administration ranged from 0 minutes to 1 hour and 50 minutes of the child awakening

with an average of 28.25 minutes that the child received medication prescribed. Mothers

reported seeing the therapeutic effect of the stimulant medications in this study

(Concerta, Focalin, and Strattera) within one hour of administration.

Additional Findings of the Morning Experience

The DRW was used to measure the parents' perception of the overall morning

experience and the impact on parental mood. Using a five point response scale parents

had the option to rate the overall quality of the morning compared to other mornings.

These items asked: (a) how the morning compared to other mornings spent with the child

(much better to much worse), (b) the amount of time the child spent getting ready for

64

parental effort spent to ready the child for school as compared to a typical morning

(much less to much more), (d) parent's mood upon awakening, before interaction with

the child (very good to very poor), and (e) how the parent would rate his/her mood by

the time the child left for school (much better to much worse). The purpose of these

questions was to determine whether the two mornings assessed in this study are typical of

other mornings in the life of this family and if interactions with the target child impacted

the parent's mood on the mornings recorded.

Parents in both groups rated the morning as highly comparable to the typical

morning spent with their child. Parents in the typical group responded that the morning

experiences recorded were "about the same" at 78 % and the morning was better than

typical mornings in 22% of the morning experiences. Of 16 morning experiences

recorded for the ADHD group, 93% were rated by the parent as "about the same", there

were no mornings rated better and one morning was rated as "worse" for this group.

The amount of time spent getting the child ready for the day was reported as

about the same for 86 % of the typical group and 87 % for the ADHD group. Parental

effort was reported about the same at 91 % for the typical group and 93% for the

ADHD group. Findings further indicated that in the typical group the mothers rated their

mood upon awakenings as very good to good in 18 of the 23 morning experiences

recorded (78%) and 5 experiences were rated as neutral (21%). In comparison, the

mothers in the ADHD group rated their mood upon awakening as very good to good in 7

recorded morning experiences (44%) and 9 morning experiences were rated as neutral

(56%). Using the Mann - Whittney U, there were no significant difference between the

two groups of the ratings of their moods upon awakening U =133.5, p=.l 1.

65

Using self-report the parent's mood was then measured after interaction with the target

child by the time the child left the parent's presence. In the typical group 4 (17%) of the

mothers reported they were in a better mood with 17 (73.9%) of the mothers rating their

mood "as about the same". Two mothers rated their mood as worse after interacting with

their child. This finding is reflective of the two mothers who rated high on their reported

stress level and negative feelings on parenting. In the ADHD group, no mothers reported

that their moods were better after interaction with their child. Ninety-three percent (93%)

of the mothers in the ADHD group reported that their mood was "about the same and

only one mother reported her mood as worse after interaction with their child. These

findings lend support of having captured an example of typical morning in the lives of the

participating families during this study.

66

Chapter V: Discussion

Parenting is a rewarding experience however, not one without challenges. The

results of this study show that parents' experiences raising a child with ADHD differ

from parents who raise a child without ADHD. The first part of this study focused on

mothers' and fathers' perceptions of the impact of their child's behavior on family

functioning and parenting stress among families with and without children with Attention

Deficit Hyperactivity Disorder (ADHD). In addition, quality and affective tone of

morning routines were assessed on the same families on two consecutive mornings to

understand the general atmosphere of the morning experience. The goal of the study is to

enhance clinician understanding of parents' experiences raising a child with ADHD.

Results are discussed below and, where appropriate, anecdotal data from initial family

interviews and rater comments are included to support interpretations of the analyses.

Major findings of this study suggest that although ADHD has a significant impact on

family relationships and parent stress, parents work hard at maintaining a normal and

positive environment for their children with ADHD.

Quality of Family Functioning

Patterson's (1982) Coercion Theory was foundational to the development of

hypotheses related to family functioning. According to this theory, parents and children

inadvertently reinforce coercive behavior in one another leading to: (a) lower family

functioning, (b) increased parenting stress, and (c) lower quality of family interactions.

Based on this theory, it was hypothesized that parents of children with ADHD would

report lower quality in family functioning and greater parent stress. Consistent with this

hypothesis, parents of children with ADHD reported significantly lower family

functioning related to the impact of the child on the family social life, negative feelings

about parenting, and quality of sibling relationships. Parents of children with ADHD also

reported higher parenting stress than parents of children without ADHD. These findings

are congruent with those reported in previous literature related to parenting a child with

ADHD (Baker, 1994; Fisher, 1990; Barkley, 1998; Hankin et al., 2001; MTA, 2002;

Kendall, 1999).

Parents of children with ADHD in this sample reported that their child's

unpredictable, intense, and disruptive behavior in social situations limited their family's

social interactions. During the initial interview one mother stated:

" His behavior is so unpredictable, I know not to even try shopping with him. People don't understand when he is upset. It is easier if I just stay home. I wait until my husband is home or my mom comes. No baby sitters, that would not be fair to them (babysitter)."

These data show that for many parents of children with ADHD, it is often easier

to forgo social and family functions to avoid parent-child conflict and the perceived

judgment of others. Other barriers to social and family functions identified in the

literature include (a) lack of adequate child care, (b) fear of the child's public display of

disruptive behaviors, and (c) perceived parenting inadequacies (Barkley, 1995; Hinshaw,

et al., 2000; Johnston & Ohan, 2005; Kendall, 1999; Kendall et al., 2003).

Decades of research consistently show that in families with children with

attentional and disruptive behaviors, when compared to families of children without

behavioral disorders, more negative parent-child interactions and more coercive

interchanges exist (Barkley, 1995, 1998; Baker et al., 2000; Bugental & Johnston, 2000;

Donenberg & Baker, 1993; Johnston & Ohan, 2005; Kendall, 1998; Patterson, 1982).

Research also indicates that disruptive behaviors have a negative impact on the parent

68

child relationship and perception of parenting success (Barkley, 1995; Bugental &

Johnson, 2000; Hinshaw, 2005; Harrison & Sofronoff, 2002). In this study parents in the

ADHD group reported more negative feelings about parenting than parents in the typical

group. This finding underscores the need for further exploration into the development of

interventions to aid in the development of positive parental experiences and role

satisfaction.

The family system is foundational in the development and maintenance of

socialization, emotion regulation, and cognitive processing develop. Through repeated

family interactions boundaries are set, and family members learn the rules for relating to

one another (Anastopoulos & Shelton, 2001; Barkley, 1995; Minuchin, 1993; Patterson,

1982).

Parental reports in the ADHD group indicate that sibling complaints about the

target child's behavior were significantly more negative than in the typical group. This

finding suggests the development of coercive relationships may extend into sibling

interactions, supporting earlier research findings on the negative impact of the child with

ADHD on sibling relationships (Johnston & Ohan, 2005; Kendall, 1999; Kendall &

Shelton, 2003). It is estimated that children with ADHD and their siblings engage in two

to four times the amount of negative behaviors as do siblings without ADHD (Hankin et

al., 2001). Given the estimated occurrence of negative interactions among the children

with ADHD and their siblings, further exploration into sibling relationships from the

perspective of the target child and sibling is needed (Barkley, 1998; Hankin et al., 2001;

Johnston & Ohan, 2005; Mash & Johnston, 1983).

Marital discord is well documented in the ADHD literature with parents of

69

children with ADHD 3 to 5 times more likely to separate or divorce (Anastopoulos &

Shelton, 2001; Barkley, 1995, 1998; Kendall & Shelton, 2003; Stein, 2001; Wells et al.,

2000b). In the current study, fathers of children with ADHD perceived the child as

having a greater negative impact on the marriage than did mothers. Discussion with the

parents indicate that mothers believe it is their responsibility to provide the most

normative and supportive environment in raising their child. The fathers in this study

verbally expressed support of the mothers' efforts to care for their child. However, based

on data from the Family Impact Questionnaire, parental disagreement and conflict

surrounding child rearing has a substantial negative impact on marital functioning.

Further exploration into this finding is warranted. Currently, much of the literature related

to family functioning is based on the mother's perspective with little insight provided

from the father's perspective.

Parenting Stress

It was hypothesized that parents of children with ADHD would report a higher

level of parental stress than parents of typical children. Congruent with previous research

findings, parenting stress was reported to be higher among the parents of the children

with ADHD compared to parents of typical children (Anastopoulos & Shelton, 2001;

Baker, 1994; Barkley, 1995; Crnic, Acevedo & Bornstein, 1995; Donenberg & Baker,

1993; Hinshaw et al., 2000; MTA, 2000; Wells et al , 2000b).

In the typical group, two mothers scored substantially higher than the other

parents in this group (i.e., stress scores of 30-44 points higher on the Parenting Stress

Index). However, only one of these mothers reported elevated negative feelings about

parenting and group stress scores were still higher overall in the ADHD group.

It was further hypothesized that the parent identified as having the responsibility

of assisting the child with ADHD in getting ready for the day will report a higher level of

parental stress than his or her spouse. Although the mothers of children with ADHD had

the primary role of assisting the child ready for the day there was no significant

difference between the stress scores of the mothers and fathers of this group. This finding

may be relative to this sample as the mothers in the ADHD group had a plan for their

mornings to maintain consistency and manage the experience, by having the child's

clothing, supplies and needed articles ready the night before needed.

Quality and Affective Tone of Morning Routines

The impact of ADHD on family functioning is well documented in the literature.

However, the majority of the information is based on parental report and clinical

observation. The current study strove to elicit greater insight into the lived experience by

utilizing audio taped samples of unobserved parent-child interchanges during morning

routines in the home. It was hypothesized in families of children with ADHD that the

morning experience would reflect a more negative affect present than positive affect

compared with families of typical children.

Contrary to the hypothesis, no differences were noted between the Non-ADHD

group and the ADHD group in the frequencies of positive, negative or neutral affective

tones during recorded morning interactions. However, there was a trend toward more

positive affective tones during morning routines being present in families in the typical

group and more negative affective tones among families in the ADHD group. It is

possible that with a larger sample size, these differences might have been statistically

significant.

71

The Audio Rating Scale (ARS) was used to code affective tone from the

audiotaped morning routines by coders blind to group assignment. Review of the coders'

comments from the ARS indicate that the morning experiences in the homes of typical

children tended to be more positive. Descriptors of the interchange between the family

members of typical children noted by coders include: (a) "pleasant interchange," (b)

"playful interaction," (c) "calm," (d) "quiet conversations" and (e) "I love you" being

expressed. Description of the interchanges among family members in the ADHD group

included: (a) "encouraging," (b) "stressed,"(c) "whining and yelling," (d) "at times

quiet". In the ADHD group, "I love you" was also often expressed. Children in both

groups were noted to whine at times. In the review of the tapes, the coders and the

investigator noted that mothers in typical families tended to remain calm when faced with

arguing or negative child responses. On the other hand, for families in the ADHD group,

the negative interactions tended to escalate quickly, resulting in parental frustration,

hostility or yelling.

These observations are consistent with Patterson's Coercion Theory, previously

described in Chapter 1. Patterson (1982) theorizes that in aversive social interactions, as

with a parent and child, coercive events are serially dependent and reciprocally

deterministic. Each event (interaction) is both a "reaction" to prior events (attack) and a

"stimulus" (counter attack) for the events to follow, with both persons using coercive

behaviors to maximize a short-term payoff (turning off the attacks or demands of

another). This type of interaction was found to be present in this study leading to

parental frustration and the parent assisting with or completing tasks for the child to save

time and avoid conflict.

72

Time and Morning Task Completion

In this study it was hypothesized that, children with ADHD would require a

longer period of time to complete morning tasks than children in the typical group.

However, there were no differences between groups on length of time child needed to

complete morning routines or number of morning routines completed. This finding tends

to run contrary to the previous research in which the child's oppositional behavior

prolongs task performance and limits task completion (Anastopoulos & Shelton 2001;

Barkley, 1997 b, 1995; Cepeda, Cepeda, & Kramer, 2000; Donenberg & Baker, 1993;

Hoza, 2001; Pary, Lewis, Matuscka, Lippmann, 2002; Smith et al., 2000; Wells et al.,

2000b) The current finding may be due to the organizational efforts by the mothers in the

ADHD group to provide a non-eventful morning.

In addition to organizing the morning tasks, mothers expressed the importance of

managing the timing of medication administration. Mothers of children with ADHD

described the importance of managing the timing of their children's medication

administration to most benefit their school and social experiences. Timing of the

medication administration ranged from immediately upon awakening to 1 hour and 50

minutes after the child awakened (M = 28.25 minutes). Mothers reported seeing the

therapeutic effect of the medications (i.e., Concerta, Focalin, and Strattera) within one

hour of administration.

In addition, the children with ADHD were very aware of how ADHD impacted

them and their family's lives. Conversations about medication and medication effects

were often discussed by the children and the interviewer. The children were

knowledgeable about how their medications did or did not benefit them and side effects.

73

One child who was having trouble sleeping while taking Concerta and had switched to

Strattera shared,

"I was taking Concerta and I couldn't sleep. I felt shaky. My brain was better and clear with Concerta but I don't shake and can sleep with Strattera."

In many cases the target child spoke with the investigator when she made home visits to

obtain consent. Children in both groups were open and spoke freely about their interests

and school. The children with ADHD often shared they did not like being "different"

from other children. These children tended to stay close to their parents as forms were

being filled out and shared concerns over who would see or hear their information. It is

possible that the children's concerns may have affected how parents answered questions

on the research measures or how the family behaved during mornings when they were

being audiotaped.

Limitations of the Study

Response to recruitment efforts was limited. Recruitment efforts spanned 18

months resulting in a small, homogenous convenience sample of 23 families (n= 12

typical and n=l 1 ADHD) which were unbalanced on child gender. Factors associated

with this limited response include: (a) observed multiple life demands on family time and

scheduling, (b) difficulty getting both parents to participate in the study, and (c) concern

among parents that the study would intrude on the family's life and privacy. It is possible

that these factors biased the sample toward families who had fewer conflicts, more

parenting confidence, and greater comfort managing their children's illness. Another

indicator that the participants in the ADHD group had a greater comfort in sharing their

experience lies in the fact that most children in the group had been on medication for two

years. The use of medication was seen as an aid in helping control the child's behavior.

74

All parents in the ADHD group agreed that if they participated in the study before their

child's ADHD was diagnosed, the findings of this study would have been different and

would have reflected a more negative view of the child's ADHD behaviors and family

functioning.

Three psychologists, two nurse practitioners, a special education teacher, and two

day care center directors posted flyers, made handouts available and announced the study

to parents at their facilities. Participants were initially offered $20. In an effort to recruit

more participants reimbursement was raised to $50. However, this increase in

reimbursement did not lead to an increase in participation.

With the exception of two participants, the parent responding to the advertisement

was the mother of the target child. Two fathers, who responded to study flyers were

nurses who knew the investigator and were aware of her interest in ADHD. Four mothers

responding to the advertisement did not participate because the fathers refused to allow it.

One father who refused to participate in the study he stated "What goes on behind

closed doors in a family is not what is always seen in public. I prefer not to have my

family listened to." In another case, a mother agreed to participate but during the initial

visit the father left the interview stating, "You are a nice lady and I would like to help,

but this is her problem." Turning to the wife he then expressed, "This is your problem,

you have made him this way, you handle it," he then left the room. The family did not

participate and follow up calls were not answered by either parent.

Three participating families did not return their audiotapes to the investigator at

the end of the study. Although these families were retained, only their questionnaire data

was used in the analyses. The loss of audiotapes from these three families may have led a

75

bias in that more positive audiotaped interactions were submitted for coding. For

example, one father refused to allow the family to be taped after three attempts because

of the target child having multiple tantrums leading the family to become distraught. This

father stated, "You can use our papers but he is upsetting the others and that makes for a

bad school day and start for Mom."

In two families the parent and child gave permission and participated by filling

out questionnaires but did not return audiotapes. Although they initially reported the

taping was completed, a time for pick-up of the materials could not be arranged. These

participants gave no response to follow-up contact to obtain completed tapes and forms.

The investigator did stop by the homes of these three families to retrieve the tapes but

was only able to obtain tapes and forms from one family.

Another limitation of the study is the gender imbalance across groups. Gender

distribution in the ADHD group consisted of 10 males and 1 female child. This ratio is

reflective of the prevalence of ADHD among boys and girls which shows that the ratio

of ADHD diagnosis of boys to girls is approximately a 4:1 to 9:1 ratio (American

Psychological Association, 1994). Therefore, some of the results obtained may have

been due to group differences in gender composition and not the diagnosis of ADHD.

Conclusions

The findings suggest that although ADHD has a significant impact on family

relationships and parent stress, parents persist in maintaining a positive environment for

their children with ADHD. Fathers of children with ADHD may perceive the child as

having a greater impact on their marriage than do mothers. Findings may 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.

Further research into daily family functioning and ADHD is needed. The

generalizabilty of this study's findings to the general population is restricted by the

described limitations. However, the gained insight into the every day lives of the

participants can be of great value in developing future research

Greater knowledge and understanding of the challenges faced by parents of

children with ADHD are essential for healthcare professionals to develop appropriate,

supportive and effective interventions in the treatment of families impacted by ADHD.

Exploration of the parent's perceptions related to the impact of their child's behavior on

parental and family functioning is crucial to developing this knowledge. However, entry

into the families' personal lives outside the clinical setting and a controlled environment

was found to be a difficult task. Trust is a key component in reaching these families.

Collaborative partnerships for research inclusive of clinicians from nursing, medicine,

social work and psychology who are treating families impacted by ADHD are needed.

Working together, clinicians can help establish trust between the researcher and the

family. Trust can lead to the opening of doors and greater insight to the everyday

challenges faced by these parents. Access and insight into the family's every day life can

assist clinicians to design treatment strategies that empower the parents to productively

intervene and care for their child with ADHD. Parents need to feel supported, respected

and recognized as the resident expert in their child's life. Raising a child with ADHD can

be very challenging; parents need to know they do not have to make the journey alone.

77

References

Abidin, R. R. (1995). Parenting stress index (Srded.) Lutz, FL: Psychological Assessment Resources, Inc.

Abikoff, H., Hechtman, L., Klien, R., Weiss, G., Fleiss, K., Ectovitch, J., et al. (2004). Symptomatic Improvement in children with ADHD treated with long-term methylphenidate and multimodal psychosocial treatment. Journal of the American Academy of Child and Adolescent Psychiatry, 43 (7), 802-811.

Althoff, R. R., Rettew, D.C., & Hudziak, J. J. (2003). Attention-deficit/hyperactivity disorder, oppositional defiant disorder, and conduct disorder. Psychiatric Annals, 33(4), 245-252.

American Academy of Pediatrics. (2000). Clinical practice guideline: Diagnosis and evaluation of the child with attention - deficit/Ffyperactivity disorder. Pediatrics, 105(5), 1158-1170.

American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4 th ed.) Washington, DC: Author

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders(4 th ed., text rev) Washington, DC: Author

Anastapoulos, A.D., & Shelton, T. L. (2001). Assessing attention-deficit/hyper activity disorder. New York: Kluwer Academic/Plenum Publishers.

Anastopolous, A.D., Shelton, T. L., DuPaul G. L., & Guevremont, D.C. (1993). Parent training for attention-deficit hyperactivity disorder: It's impact on parent functioning. Journal of Abnormal Child Psychology, 21(5), 581-597.

Anderson, C. A., Hinshaw, S. P., & Simmel, C. (1994). Mother-child interactions in ADHD and comparison boys: Relationships with overt and covert externalizing behavior. Journal of Abnormal Child Psychology, 22(2), 247-265.

Angold, A., Erkanli, A., Egger, FL, & Costello, J. E. (2000). Stimulant treatment for children: A community perspective. Journal of the American Academy of Child and Adolescent Psychiatry, 39(8), 975-984.

Baker, B. L., Heller, T. L., & Henker, B. (2000). Expressed emotion, parenting stress, and adjustment in mothers of young children with behavior problems. Journal of Child Psychology and Psychiatry, 33 (7), 907-915.

Baker, D. B. (1994). Parenting stress and ADHD: A comparison of mothers and fathers. Journal of Emotional and Behavioral Disorders, 2(1), 46-50.

Banaschewski, T., Hollis, C, Oosterlann, J., Roeyers, H., Rubia, K., Willcutt, E., et al. (2005). Towards an understanding of unique and shared pathways in the psyehopathophysiology of ADHD. Developmental Science, 8(2), 132-140.

Barkley, R. A. (1995). Taking charge of ADHD: The complete authoritative guide for parents. New York: Guilford Press.

Barkley, R. A. (1997a). Behavioral inhibition, sustained attention, and executive functions: Constructing a unifying theory of ADHD. Psychological Bulletin, 121 (1), 65-94.

Barkley, R. A. (1997b). Toward a broader definition of the age-of-onset criterion for attention- deficit hyperactivity disorder. Journal of the Academy of Child and Adolescent Psychiatry, 36 (9), 1204-1211.

Barkley, R. A. (1998). Attention-deficit hyperactivity disorder. Scientific America, (9), 66-71.

Barkley, R. A. (2000a). Commentary: Issues in training parents to manage children with behavior problems. Journal of the American Academy of Child and Adolescent Psychiatry, 39(8), 1004-1007.

Barkley, R. A. (2000b). Genetics of childhood disorders: XVII. ADHD, part 1: The executive functions and ADHD. Journal of the American Academy of Child and Adolescent Psychiatry, 39 (8), 1064-1068.

Barkley, R. A., (2002). International consensus statement on ADHD. Journal of the Academy of Child and Adolescent Psychiatry, 41, 1389.

Barkley, R. A., Fischer, M. Smallish, L., & Fletcher, K., (2003). Does the treatment of attention-deficit/hyperactivity disorder with stimulants contribute to drug use/ abuse? A 13-year prospective study. Pediatrics, 113 (1), 97-109.

Barkley, R. A., Grodzinsky, G., & DuPaul, G. J. (1992). Frontal lobe functions in attention deficit disorder with and without hyperactivity: A review and research report. Journal of Abnormal Child Psychology, 20(2), 163-188.

Baving, L., Laucht, M., & Schmidt, M. H. (2000). Oppositional children differ from healthy children in frontal brain activation. Journal of Abnormal Child Psychology, 28(3), 269-275.

Belsky, J., Crnic, K., & Gable, S. (1995). Determinants of co-parenting: Spousal differences and daily hassles. Child Development, 66, 629-642,

Biederman, J. (1998). Attention-deficit/hyperactivity disorder: A life span perspective. Journal of Clinical Psychiatry, 59 (suppl 7), 4-16.

Biederman, J., Faraone, S. V., Milberger, S., Jetton, J. G., Chen, L., Mick, E., et al. (1996). Is childhood oppositional defiant disorder a precursor to adolescent conduct disorder? Findings from a four-year follow-up study of children with ADHD. Journal of the American Academy of Child Adolescent Psychiatry, 35 (9), 1193-1204.

Biederman, J., Faraone, S. V., Keenan, K., Benjamin, J., Krifcher, B., Moore, C, et al. (1992). Further evidence for family-genetic risk factors in attention deficit hyperactivity disorder: Patterns of comorbidity in probands and relatives in psychiatrically and pediatrically referred samples. Archives of Genetic Psychiatry, 49, 728-738.

Biederman, J., Newcorn, J., & Sprich, S. (1991). Comorbidity of attention deficit hyperactivity disorder with conduct, depressive, anxiety, and other disorders. American Journal of Psychiatry, 148 (5), 564-569.

Boles, M., Lynch, F., & DeBar, L. (2001). Variations in pharmacology for attention deficit hyperactivity disorder in managed care. Journal of Child and Adolescent Psychopharmacology, 11 (1), 43-52.

80

Breen, M.J., & Barkley, R. A. (1988). Child psychopathology and parenting stress in girls and boys having attention deficit disorder with hyperactivity. Journal of Pediatric Psychology, 13, (2), 265-280.

Bugental, D. B., & Johnston, C. (2000). Parental and child cognitions in the context of family. Annual Review of Psychology, 51, 315-344.

Buitalaar, J.K., Van Der Gag, R. J., Swaab-Barneveld, H., & Kuiper, M. (1995). Prediction of clinical response to methylphenidate in children with attention-deficit hyperactivity disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 34 (8), 1025-1031.

Bull, C , & Whelan, T. (2006). Parental schemata in the management of children with attention deficit-hyperactivity disorder, Qualitative Health Research, 15, (5), 664-678.

Bussing, R. & Gary, F.A. (2001). Practice guidelines and parental ADHD treatment evaluations: Friends or foes. Harvard Review of Psychiatry, 9 (5), 223-233.

Bussing, R., Gary, F. A., Mason, D.M., Leon, C. E., Karabi, S., Wilson-Garven, C. (2003). Child temperament, ADHD, and caregiver strain: Exploring relationships in an epidemiological sample. Journal of the American Academy of Child and Adolescent Psychiatry, 42 (2), 184-192.

Campbell, L., Malone, M. A., Kershner, J.R., Roberts, W., Humphries, T., & Logan, W. J. (1996). Methyphenidate slows right hemisphere processing in children with attention deficit/hyperactivity disorder. Journal of Child and Adolescent Psychopharmacology, 6 (4), 229-239.

Castellanos, F. X. (1997). Toward a pathophysiology of attention- deficit/hyperactivity disorder. Clinical Pediatrics, 7, 381-393.

Castellanos, F. X. (2000) . Neuroimaging studies of attention-deficit/hyperactivity disorder. In M. Solanto, A. Arnsten, & F. X. Castellanos (Eds.), In press, Attention deficit/hyperactivity disorder and stimulants: Basic and clinical neuroscience. New York: Oxford University Press.

81

Cepeda, N. J., Cepeda, M. L., & Kramer, A. F. (2000). Task switching and attention deficit hyperactivity disorder. Journal of Abnormal Child Psychology, 28 (3), 213-226.

Cipkala-Gaffin, J. A. (1998). Diagnosis and treatment of attention-deficit/hyperactivity disorder. Perspectives in Psychiatric Care, 34 (4), 18-25.

Clark, C , Prior, M., & Kinsella, & G. J. (2000). Do executive function deficits differentiate between adolescents with ADHD and oppositional defiant/conduct disorder? A neuropsychological study using the six elements test and Hayling sentence completion test. Journal of Abnormal Child Psychology, 28 (5), 403-414.

Coe, R. (2003, September). It's the effect size, stupid: What effect size is and why it is important. Paper presented at the Annual Conference of the British Educational Research Association, University of Exter, England.

Cody, H. & Hynd, G. W. (1999). Neuropsychological advances in child and adolescent mental health: The decade of the brain. Child Psychology and Psychiatry, 4(3), 103-108.

Conner, D. F., Edwards, G., Fletcher, K. E., Baird, J., Barkley, R.A., & Steingard, R.J. (2003). Correlates of comorbid psychopathology in children with ADHD. Journal of the American Academy of Child and Adolescent Psychiatry, 42 (2), 193-200.

Cox, M. J., & Paley, B. (1997). Families as systems. Annual Review of Psychology, 48, 243-267.

Crnic, K., Acevedo, M., & Bornstein, M. H. (1995). Everyday stresses and parenting. In M. H. Bornstein (Ed.), Handbook of Parenting (Vol. 4, pp. 277-297). Mahwah, NJ: Erlbaum.

Crnic, K. A., & Greenberg, M. T. (1990). Minor parenting stresses with young children. Child Development, 61, 1628-1637.

82

Delaney, K. R. (2006). Following the affect: Learning to observe emotional regulation. Journal of Child and Adolescent Psychiatric Nursing, 19 (A), 175-181.

Dishon, T. J., Patterson, G. R., & Kavanaugh, K. (1992). An experimental test of the Coercion Model: Linking theory measurement, and intervention. In J. McCord & R. Trembly (Eds.), The interaction pf theory and practice: Experimental studies of interventions (pp. 253-282). New York: Guilford.

Donenberg, G. & Baker, B. L. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology. 21, 179-198.

DuPaul, G. J., & Ervin, R. A. (1996). Functional assessment behaviors related to attention-deficit/hyperactivity disorder: Linking assessment to intervention design. Behavior Therapy, 27, 610-622.

Edwards, J. (2002). Evidence-based treatment for child ADHD: "Real-World" practice implications. Journal of Mental Health Counseling, 24 (2), 126-139.

Epstein, J. N., Conners, J. K., Erhardt, D., Arnold, L. E., Hechtman, L., Hinshaw, S. P., et al. (2000). Familial aggregation of ADHD characteristics. Journal of Abnormal Child Psychology, 28(6), 585-594.

Epstein, J. N., Conners. K., Hervey, A. S., Tonev, S.T., Arnold, EX., Abikoff, H. B., et al. (2006). Assessing medication effects in the MTA study using neuropsychological outcomes. Journal of Child Psychology and Psychiatry 47 (5), 446-456.

Everett, C.A., & Volgy Everett, S. (1999). Family therapy for ADHD: Treating children, adolescents, and adults. New York: The Guilford Press.

Faraone, S. V., Biederman, J. Mennin, D., Russell, R., & Tsuang, M. T. (1998). Familial subtypes of attention deficit hyperactivity disorder: A 4-year follow-up study of children from antisocial-ADHD families. Journal of Child Psychology & Psychiatry, 39(1), 1045-1053.

Fischer, M. (1990). Parenting stress and the child with attention deficit hyperactivity disorder. Journal of Clinical Child Psychology, 19(4), 337-346.

83

Foy, J. M., & Earls, M. F., (2005). A process for developing community consensus regarding the diagnosis and management of attention-deficit hyperactivity disorder. Pediatrics, 115 (1), 97-104.

Frick, P. J., Lahey, B. B., Christ, M. A. G., Loeber, R., & Green, S. (1991). History of childhood behavior problems in biological relatives of boys with attention-deficit hyperactivity disorder and conduct disorder. Journal of Clinical Child Psychology, 20 (A), 445-451.

Friemoth, J. (2005). What is the most effective treatment for ADHD in children ? The Journal of Family Practice, 54 (2). 166-168.

Furman, L. (2007). Stimulants and sudden death: What is the risk? Pediatrics, 119, 409.

Greenhill, L., Swanson, J. M, Vitiello, B., Davies, M., Clevenger, W., Wu, M , et al. (2001). Impairment and deportment response to different methylphenidate doses in children with ADHD: The MTA titration trial. Journal of the American Academy or Child and Adolescent Psychiatry. 40 (2), 180-187.

Gresham, F. M , MacMillan, D. L., Bocian, K. M., Ward, S. L., & Forness, S. R. (1998). Comorbidity of hyperactivity-impulsivity-inattention and conduct problems: Risk factors in social, affective, and academic domains. Journal of Abnormal Child Psychology, 26 (5), 393-406.

Gross, D. (1996). What is a good parent. The American Journal of Maternal Child Nursing, 21 (4), 178-182.

Gutgesell, H., Atkins, D., Barst, R., Buck, M , Franklin, W., Humes, R., et al. (1999). Cardiovascular monitoring of children and adolescents receiving, psychotropic drugs: A statement for healthcare professionals from the Committee on Congenital Cardiac Defects, Council on Cardiovascular Disease in the Young, American Heat Association. Circulation: Journal of the American Heart Association, 99, 979-982.

Hack, S., & Chow, B. (2001). Pediatric psychotropic medication compliance: A literature review and research-based suggestions for improving treatment compliance. Journal of Child and Adolescent Psychopharmacology, 2 (1), 59-67.

84

Hankin, C.S., Wright, A., & Gephart, H. (2001). The burden of attention-deficit/hyperactivity disorder. Drug Benefit Trends, 13 (4). 1-8.

Hansen, D. L. & Hansen, E. H. (2006). Caught in a balancing act: Parents' dilemmas regarding their ADHD child's treatment with stimulant medication. Qualitative Health Research, 16 (9), 1267-1285.

Harborne, A., Wolpert, M., & Clare, L. (2004). Making sense of ADHD: A battle for understanding? Parents' views of their children being diagnosed with ADHD. Clinical Child Psychology and Psychiatry, 9 (3), 327-339.

Harrison, C , & Sofronoff, K. (2002). ADHD and parental psychological distress: Role of demographics, child behavioral characteristics, and parental cognitions. Journal of the American Academy of Child and Adolescent Psychiatry, 41 (6), 703-711.

Hechtman, L. (1996). Families of children with attention deficit hyperactivity disorder: A review. Canadian Journal of Psychiatry, 41, 350-360.

Hechtman, L., Abikoff, H. Klein, R., Greenfield, B., Etcovitch, J., Cousins, L., et al. (2004). Children with ADHD treated with long-term methylphenidate and multimodal psychosocial treatment: Impact on parental practices. Journal of the American Academy of Child and Adolescent Psychiatry, 43 (7), 830-838.

Hinshaw, S. P. (1992). Externalizing behavior problems and academic underachievement in childhood and adolescence: Causal relationships and underlying mechanisms. Psychological Bulletin. Ill, 127-155.

Hinshaw, S. P. (2005). The stigmatization of mental illness in children and parents: Developmental issues, family concerns, and research needs. Journal of Child Psychology and Psychiatry 46 (7), 714-734.

Hinshaw, S.P., Hoagwood, K., Jensen, P. S., Kratochvil, C , Bickman, L., Clarke, G., et al. (2004). AACP 2001 Research forum: Challenges and recommendations regarding recruitment and retention of participants in research investigations.

Journal of the American Academy of Child and Adolescent Psychiatry, 43 (8), 1037-1045.

85

Hinshaw, S.P., Owens, E. B., Wells, K. C , Kraemer, H. C , Abikoff, H. B., Arnold, E. C , et al. (2000). Family processes and treatment outcome in the MTA: Negative/ineffective parenting practices in relation to multimodal treatment. Journal of Abnormal Child Psychology, 28 (6), 555-568.

Hoagwood, K., Kelleher, K. J., Feil, M., & Comer, D. (2000). Treatment services for children with ADHD: A national perspective. Journal of the American Academy of Child and Adolescent Psychiatry, 39 (2), 198-206.

Holmes, S. E., Slaughter, J. R., & Kashani, J. (2001). Risk factors in childhood that lead to the development of conduct disorder and antisocial personality disorder. Child Psychiatry and Human Development, 31 (3), 183-193.

Horst, R. O., & Hendren, R. L. (2005). Integrated pharmacologic treatment of attention-Deficit Hyperactivity disorder (ADHD). Essential Psychopharmacology, 6 (5), 250-261.

Hoza, B., Owens, J, Pelham, W., Swanson, J., Conners, C, Hinshaw, S., et al. (2000) Parent cognitions as predictors of child treatment response in attention deficit/hyperactivity disorder. Journal of Abnormal Psychology, 28, 569-583.

Hudziak, J.J., Derks, E.M., Althoff, R. R., Rettew, D. C , & Boomsma, D. I. ( 2005). The genetic and environmental contributions to attention deficit hyperactivity disorder as measured by the Connor's rating scales- revised. American Journal of Psychiatry, 162 (9), 1614-1620.

Jacobs, E. H. (1990). Fathering the ADHD child: A book for fathers, mothers, and professionals. New Jersey, Northvale: Jason Aronson Inc.

Jacobson, G. A. (1999). Parenting processes: A descriptive exploratory study using Peplau's theory. Nursing Science Quarterly, 13 (3), 240-244.

Jensen, P. S. (2000). Stimulant treatment for children: A community perspective: Commentary. The Journal of Child and Adolescent Psychiatry, 39 (8). 984-987.

Jensen P. S., & Cooper, J. R. (2002). Attention deficit hyperactivity disorder: State of the science-best practices. Kingston, NJ: Civic Research Institute.

Jensen, P.S., Garcia, J.A., Glied, S., Crowe, M., Foster, M., & Schlander, et al. (2005). Cost-effectiveness of ADHD treatments: Findings from the multimodal treatment study of children with ADHD. American Journal of Psychiatry, 162(9), 1628-1636.

Jensen, P.S., Kettle, L., & Roper, M. S., et al. (1999). Are stimulants over prescribed? Treatment of ADHD in four US communities. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 797-804.

Jensen, V. K., Larrieu, J. A., & Mack, K. K. (1997). Differential diagnosis between attention-deficit/hyperactivity disorder and pervasive development disorder - not otherwise specified. Clinical Pediatrics, 12, 555-561.

Johnston, C. (1996). Parent characteristics and parent-child interactions in families of nonproblem children and ADHD children with higher and lower levels of oppositional-defiant behavior. Journal of Abnormal Child Psychology, 24, 85-104.

Johnston, C , Chen, M., & Ohan, J. (2006). Mother's attribution for behavior in nonproblem boys, boys with attention deficit hyperactivity disorder, and boys with attention deficit hyperactivity disorder and oppositional defiant behavior. Journal of Clinical Child and Adolescent Psychology, 35, (1), 60-71.

Johnston, C , & Mash, E. (2001). Families of children with attention-deficit/hyperactivity disorder: Review and recommendations for future research. Clinical Child and Family Psychology Review, 4 (3), 183 -207.

Johnston, C. & Ohan, J. L. (2005). The importance of parental attributions in families of children with attention-deficit/hyperactivity and disruptive behavior disorders. Clinical Child and Family Psychology Review, 8 (3), 167-181.

Kaplanek, B. (2002). Household havoc. Psychology Today, 35 (5), 28.

Karreman, A., vanTuijl, C , van Aken, M. A. G., & Dekovic, M. (2006). Parenting and self-regulation in preschoolers: A meta-analysis. Infant and Child Development, 15, 561-579.

Kashdan, T.B., Jacob, R. G., Pelham, W. E., Lang, A. R., Hoza, B., & Blumenthal, J. D., et al. (2004). Depression and anxiety in parents of children with ADHD and varying levels of oppositional behaviors: Modeling relationships with family functioning. Journal of Clinical Child and Adolescent Psychology, 33 (1), 169-181.

Kendall, J. (1997). The use of qualitative methods in the study of wellness in children with attention deficit hyperactivity disorder. Journal of Child and Adolescent Psychiatric Nursing, 10 (4), 27-38.

Kendall, J. (1998). Outlasting disruption: The process of reinvestment in families with ADHD children. Qualitative Health Research, 8 (6), 839-857.

Kendall, J. (1999). Sibling accounts of attention deficit hyperactivity disorder (ADHD). Family Process, 38(1), 117-136.

Kendall, J., Hatton, D., Beckett, A., & Leo, M. (2003). Children's accounts of attention-deficit/hyperactivity disorder. Advances in Nursing Science, 26 (2), 114-130.

Kendall, J., Leo, M.C., Perrin, N., & Hatton, D. (2005). Modeling ADHD child and family relationships. Western Journal of Nursing Research, 27 (4), 500-518.

Kendall, J., & Shelton, K. (2003). A typology of management styles in families with children with ADHD. Journal of Family Nursing, 9 (3), 257-280.

Kerns, K. A., Mclnerney, R.J., & Wilde, N.J. (2001). Time reproduction, working memory, and behavioral inhibition in children with ADHD. Child Neuropsychology, 7(1), 21-31.

Kerns, K. A., & Price, K. J. (2001). An investigation of prospective memory in children with ADHD. Child Neurospychology, 7 (3), 162-171.

Knight, M. (2007). Stimulant-drug therapy for attention-deficit disorder (with or without hyperactivity) and sudden cardiac death. Pediactrics, 119, 154-155.

Kolko,D.J., Bukstein, O.G., & Barron, J. (1999). Methylphenidate and behavior modification in children with ADHD and Comorbid ODD or CD: Main and incremental effects across settings. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 578-586.

Lahey, B. B., Applegate, B., McBurnett, K., Biedeman, J., Greenhill, L., Hynd, G. W., Barkley, R. A., et al., (1994). DSM field trials for attention deficit hyperactivity disorder in children and adolescents. American Journal of Psychiatry, 151 (11), 1673-1685

Lahey, B. B., Pelham, W. E., Stein, M. A., Loney, J., Trapani, C , Nugent, K., et al. (1998). Validity of DSM-IV attention-deficit/hyperactivity disorder for younger children. American Academy of Pediatric Psychiatry, 37 (7), 695-702.

Landry, S. H., Miller-Loncar, C. L., Smith, K. E., & Swank, P. R. (2002). The role of early parenting in children's development of executive processes. Developmental Neuropsychology, 2(1), 15-41.

Lifford, K. J., Harold, G. T., & Thapar, A. (2008). Parent-child relationship and ADHD: A longitudinal analysis. Journal of Abnormal Child Psychology, 36(2), 285-296.

Lopez, F. A. (2006). ADHD: New pharmacological treatments on the horizon. Developmental and Behavioral Pediatrics, 2 7 (5), 410-416.

Ludwikowski, K., & DeValk, M. (1998). Attention-deficit/hyperactivity disorder: A neurodevelopmental approach. Journal of Child & Adolescent Psychiatric Nursing, i i (1), 17-29.

Mash, E. J., & Johnston, C. (1983). Parental perceptions of child behavior problems, parenting self-esteem, and mothers' reported stress in younger and older hyperactive and normal children. Journal of Consulting and Clinical Psychology, 51 (1), 86-99.

89

MacDonald, V. M., & Achenbach, T. M. (1996). Attention problems versus conduct problems as six-year predictors of problem scores in a national sample. Journal of the American Academy of Child & Adolescent Psychiatry, 35 (9), 1237-1245.

McClellan, J.M., & Werry, J.S. (2003). Evidence-based treatments in child and adolescent psychiatry: An inventory. Journal of the American Academy of Child and Adolescent Psychiatry, 42(12), 1388-1400.

Melnick, S. M., & Hinshaw, S. P. (2000). Emotion regulation and parenting in AD/HD and comparison boys: Linkages with social behaviors and peer preference. Journal of Abnormal Clinical Psychology, 28 (1), 73-86.

Miller, G. E., & Prinz, R. J. (1990). Enhancement of social learning family interventions for childhood conduct disorder. Psychological Bulletin, 108, 291-307.

Minuchin, S., & Nichols, M. P. (1993. Structural family therapy. Chapter 5 in Case Studies in Couple and Family Therapy, pp. 108-131. New York: Free Press.

Minuchin, S. (1998). Where is the family in narrative family therapy? Journal of Marital Family Therapy, 24 (4), 397-403.

Monat, A., & Lazarus, R. ( 1991). Stress and Coping. New York: Columbia University Press.

MTA Cooperative Group (2006). Assessing medication effects in the MTA study using neuropsychological outcomes. Journal of Child Psychology and Psychiatry, 47 (5), 446-456.

Multi-modal Treatment Study of Children with Attention-Deficit/Hyperactivity Disorder Cooperative Group (MTA). (1999a). A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Archives of General Psychiatry. 56(12), 1073 -1086.

90

Multi-modal Treatment Study of Children with Attention-Deficit/Hyperactivity Disorder Cooperative Group (MTA). (1999b). Moderators and mediators of treatment response for children with attention-deficit hyperactivity disorder: The multimodal treatment study of children with attention-deficit hyperactivity disorder. Archives of General Psychiatry, 56 (12), 1088-1096.

Multi-modal Treatment Study of Children with Attention-Deficit/Hyperactivity Disorder Cooperative Group. (2000). Family processes and treatment outcome in the MTA: Negative/ineffective parenting practices in relation to multimodal treatment. Journal ofAbnormal Child Psychology, 28(6), 555-568

Munro, B. (1997). Statistical methods for health care research. (3 rd. ed.) Philadelphia: Lippincott.

National Institutes of Health [NIH] Consensus Development Conference Statement (1999). Diagnosis and treatment of attention-deficit hyperactivity disorder (ADHD). Journal of the American Academy of Child and Adolescent Psychiatry, 39, 182-188.

Odom, S.E. (1996). Effects of an educational intervention on mothers of male children with attention deficit hyperactivity disorder. Journal of Community Health Nursing, 13 (4), 207-230.

Ohan, J. L., & Johnston, C. (2000). Reported rates of adherence to medication prescribed for adolescents' symptoms of ADHD. Clinical Child Psychology & Psychology, 5 (4), 581-593.

Olfson, M., Gameoff, M.J., Marcus, S. C , & Jensen, P. S. (2003). National trends in the treatment of attention deficit hyperactivity disorder. American Journal of Psychiatry, 160 (6), 1071 -1077.

Oosterlann, J., & Sergeant, J.A. (1998). Effects of reward and response cost on response inhibition in AD/HD, disruptive, anxious, and normal children. Journal of Abnormal Child Psychology, 26(3), 161-174.

Ostberg, M., & Hagekull, B. (2000). A structural modeling approach to the understanding of parenting stress. Journal of Clinical Child Psychology, 29 (4), 615-625.

91

Pary, R., Lewis, S., Matuschka, P. R., & Lippmann, S. (2002). Attention-deficit/hyperactivity disorder: An update. Southern Medical Journal, 95 (7), 743-749.

Pastor, P. N. & Rueben, C. A. (2002). Attention deficit disorder and learning disability: United States 1997-1998. National Center for Health Statistics. Vital Health Stat, 10(206), 1-18.

Patterson, G.R. (1982). Coercive family process. Eugene, OR: Castalia.

Patterson, G. R., Chamberlain, P., & Reid, J. B. (1982). A comparative evaluation of parent training procedures. Behavioral Therapy, 3, 638-650.

Patterson, G. R., DeGarmo, D. S., & Knutson, N. (2000). Hyperactive and antisocial behaviors: Comorbid or two points in the same process? Development and Psychopathology, 12 (20), 91-106.

Patterson, G. R., Reid, J.B., Jones, R.R., & Conger, R.E. (1975). Introduction: Overview of Coercion Theory, in A Social Learning Approach to Family Intervention (Vol.1), Families with Aggressive Children. Monograph of the Society for Research in Child Development. Eugene:Oregon Castalia Publishing Company

Pelham, W. E. Jr, Wheeler, T, & Chronis, A. (1998). Empirically supported psychosocial treatments for attention deficit hyperactivity disorder. Journal of Clinical Child Psychology, 27, 190-205.

Peris, T. S., & Hinshaw, S. P., (2003). Family dynamics and preadolescent girls with ADHD: the relationship between expressed emotion, ADHD symptomatology, and comorbid disruptive behavior. Journal of Child Psychology and Psychiatry, 44(8), 1177-1190.

Pillow, D. R., Pelham, W. E., Hoza, B., Molina, B. S. G., & Stultz, C. H. (1998). Confirmatory factor analyses examining attention deficit hyperactivity disorder symptoms and other childhood disruptive behaviors. Journal of Abnormal Child Psychology, 26 (4), 293-309.

Potter, N. T., & Tarleton, J. (1998). Neurogenetics in developmental and behavioral pediatrics: Advances in molecular diagnosis. Developmental and Behavioral Pediatrics, 19 (2), 117-127.

Riddle, M.A., Kastlic, E.A., & Frosch, E. (2001). Pediatric psychopharmacology. Journal of Child Psychology and Psychiatry and Allied Disciplines, 42 (I), 73-90.

Robinson, L. M., Sclar, D. A„ Skaer, T. L., & Galin, R. S. (1999). National trends in the prevalence of attention-deficit/hyperactivity disorder and the prescribing of methylphenidate among school-age children: 1990-1995. Clinical Pediatrics, 38 (4), 209-217.

Schachar, R., Mota, V. L., Logan, G. D., Tannock, R., & Klim, P. (2000). Confirmation of an inhibitory control deficit in attention-deficit/hyperactivity disorder. Journal of Abnormal Child Psychology, 28(3), 227-235.

Schachar, R., & Tannock, R. (1995). Test of four hypotheses for the comorbidity of attention-deficit hyperactivity disorder and conduct disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 34 (5), 639-648.

Seidman, L. J., Biederman, J., Faraone, S. V., Weber, W., & Ouelette, C. (1997). Toward defining a neuropsychology of attention deficit-hyperactivity disorder: Performance of children and adolescents from a large clinically referred sample. Journal of Consulting and Clinical Psychology, 65(1), 150-160.

Serene, J. A., Manzar, A. Szeszko, P.R., & Kumara, S. (2007) Neuroimaging studies of children with serious emotional disturbances: A selective review. The Canadian Journal of Psychiatry, 52 (3), 135-145.

Shafritz, K. M., Marchione, K. E., Gore, J, C , Shaywitz, S. F„ & Shaywitz, B. A. (2004). The effects of methylphenidate on neural systems of attention in attention deficit hyperactivity disorder. Journal of Psychiatry, 161 (11), 1990-1998.

Shaywitz, B. A., Fletcher, J. M., & Shaywitz, S. E. (1997). Attention-deficit/hyperactivity disorder. Advances in Pediatrics, 44, 331 -354.

93

Shute, N., Locy, T., & Pasternak, D. (2000). The peril of pills: The psychiatric medication of children is dangerously haphazard. U.S. News & World Report, March 6.

Silberstein, R. B., Farrow, M., Levy, F., Pipingas, A., Hay, D. A., & Jarman, F. C. (1998). Functional brain electrical activity mapping in boys with attention-deficit/hyperactivity disorder. Archives of Genetic Psychiatry, 55, 1105-1112.

Smith, A., Taylor, E., Rogers, J. W., Newman, S., & Rubia, K. (2002). Evidence for a pure time perception deficit in children with ADHD. Journal of Child Psychology and Psychiatry, 43(4), 529-542.

Snyder, J., Cramer, A., Afrank, J., & Patterson, G. R. (2005). The contributions of ineffective discipline and parental hostile attributions of child misbehavior to the development of conduct problems at home and school. Developmental Psychology, 41,(1), 30-41.

Spencer, T. (2002). Attention-deficit/hyperactivity disorder. 59 (2), 314-316.

Spitzer, A., Webster-Stratton, C , & Hollinsworth, T. (1991). Coping with conduct-problem children: Parents knowledge and control. Journal of Clinical Child Psychology, 20 (A), 413-427.

Stein, M. (2001). ADHD, divorce, and parental disagreement about the diagnosis and treatment. Journal of Developmental Behavioral Pediatrics, 22 (Suppl. 2), 561-565.

Strahm, C. D. (2001). Do you hear what I am saying? Interviews with parents of ADHD and typical children. Unpublished manuscript.

Strayhorn, J.M., & Weidman, C. S. (1989). Reduction of attention deficit and internalizing symptoms in preschoolers through parent-child interaction training. Journal of the American Academy of Child and Adolescent Psychiatry, 28, 888-896.

Swanson, J. M., Sergeant, J. A., Taylor, E., Sonuga-Barke, E. J. S., Jensen, P. S., & Cantwell, D. P. (1998). Attention-deficit hyperactivity disorder and hyperkinetic disorder. The Lancet, 351 (91), 429-433.

Tannock, R. (1998). Attention deficit hyperactivity disorder: Advances in cognitive, neurobiological, and genetic research. Journal of Child Psychology and Psychiatry, 39 (1), 65-69

Touliatos, J., Perlmutter, B. F., Straus, M. A., & Holden, G. W. (2001). Handbook of family measurement techniques. Thousand Oaks, California: Sage Publications.

Tucker, S., Gross, D., Fogg, L., Delaney, K., & Lapporte, R. (1998). The long-term efficacy of a behavioral parent training intervention for families with 2-year-olds. Research in Nursing & Health, 21, 199-210.

van der Meere, J., Gunning, B., & Stremerdink, N. (1999). The effect of methylphenidate and clonidine on response inhibition and state regulation in children with ADHD. Journal of Child Psychology and Psychiatry, 40 (2), 291-298.

Vaughn, M. L., Riccio, C. A., Hynd, G. W., & Hall, J. (1997). Diagnosing ADHD (predominantly inattentive and combined type subtypes): Discriminate validity of the behavior assessment system for children and the Achenbach parent and teacher rating scales. Journal of Clinical Child Psychology, 26 (4), 349-357.

Wamboldt, M. Z., & Wamboldt, F. S. (2000). Role of the family in the onset and outcome of childhood disorders: Selected research findings. Journal of the American Academy of Child and Adolescent Psychiatry. 3 9 (10), 1212-1219.

Webster- Stratton, C. & Herbert, M. (1994). Working with parents who have children with conduct disorders: A collaborative process. In C. Webster-Stratton & M. Herbert (Eds.) Troubled families-problem children. New York: John Wiley.

Weinberg, H. A. (1999). Parent training for attention-deficit hyperactivity disorder: Parental and child outcome. Journal of Clinical Psychology, 55 (7), 907-913.

Weiss, M., Hechtman, L., & Weiss, G. (2000). ADHD in parents. Journal of the American Academy of Child and Adolescent Psychiatry, 39 (8), 1059-1061.

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Wells, K.C., Epstein, J.N., Hinshaw, S. P., Connors, C. K., Klaric, J., Abikoff, H. B., et al. (2000). Parenting and family stress treatment outcomes in attention deficit hyperactivity disorder (ADHD): An empirical analysis in the MTA study. Journal of Abnormal Child Psychology, 28, (6), 543-553.

Wells, K.C., Pelham, W.E., Kotkin, R.A., Hoza, B., Abikoff, H. B., Abramowitz, A., et al. (2000). Psychosocial treatment strategies in the MTA study: Rationale, methods and critical issues in design and implementation. Journal of Abnormal Child Psychology, 28 (6), 483-505.

Wilens, T. E., Biederman, J., & Lerner, M. (2004). Effects of once-daily osmotic-release methylphenidate on blood pressure and heart rate in children with attention-deficit/hyperactivity disorder: Results from a one-year follow-up study. Journal of Clinical Psychopharmacology, 24 (I), 36-41.

Williams, J., Klinepeter, K., Palmes, G., Pulley, A., & Foy, J. M., (2004). Diagnosis and treatment of behavioral health disorders in pediatric practice. Pediatrics, 114 (3), 601-606.

Woods, S.K., & & Ploof, W.H. (1997). Understanding attention deficit hyperactivity disorder and the feeling brain. Thousand Oaks, CA: Sage Publications.

Yeo, R.A., Hill, D.E., Campbell, R.A., Vigil, J. Petropoulos, H., Hart, B., et al. (2003). Proton magnetic resonance spectroscopy investigation of the right frontal lobe in children with attention deficit/hyperactivity disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 42 (3), 303-310.

Ziegler-Dendy, C. (1999, September). What ever parent and teacher must know about ADD. Paper presented at the conference of CHADD in Chicago: Common ground AD/HD the problems and the solutions putting the pieces together, Chicago, IL.

Zito, J. M., Safer, D. J., dosReis, S., Magder, L., Laurence, S., Gardner, J. F., et al. (1999). Psychotherapeutic medication patterns for youths with attention-deficit/hyperactivity disorder. Archives of Pediatrics and Adolescent Medicine. 153 (12), 1257-126.

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APPENDIX A: Advertisement and Information Sheet

97

Appendix A Sample Flyer for Recruitment

Families Needed

Families with children ages 6 years to 12 years

old are needed to participate in a research study comparing the

parenting experience of raising a child wi th Attention Deficit

Hyperactivity Disorder (ADHD) with the parenting experience of

raising a child without ADHD.

$50.00 will be provided upon completion of study requirements.

Please contact:

Charlotte Strahm, RN, DNSc(c)

All inquiries will be kept confidential.

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Appendix A Sample Information Letter to Parents Requesting Information

Families Needed

Families with children ages 6 years to 12 years old are needed to

participate in a research study comparing the parenting

experience of raising a child with Attention Deficit Hyperactivity

Disorder (ADHD) with the parenting experience of raising a child

without ADHD.

Please contact:

Charlotte Strahm, RN, DNSc(c)

All inquiries will be kept confidential.

Purpose: The purpose of this study is to describe parents' experiences raising a child with Attention Deficit Hyperactivity Disorder (ADHD) and examine how those experiences differ from parents who raise a child without ADHD. This study will help us understand the differences in the parenting experience in raising a typical child and the child with ADHD from the parent's perspective. This understanding will aid healthcare professionals develop appropriate, supportive and effective interventions in the treatment of families impacted by ADHD. For filling out questionnaires and being audiotaped during your families daily morning experience you will receive $50.00.

What do I have to do? If you wish to participate, you will need to:

1. Read and sign a "Consent Form." This form lets us know that you

99

have been told this is a research study and you wish to participate. You will be given a copy of this form to keep.

2. Fill out questionnaires during an initial interview, during interactions with your child while being audio taping two morning experiences.

How will I get paid? After your sign the "Consent Form," your participation will begin. You will be

asked to fill out questionnaires and audio tape two consecutive morning experiences of family interactions. After you complete the questionnaires and the audio taping of two morning experiences you will sent a check for $50.00. No further compensation will be provided.

Are there any risks involved in my participation? This project has been approved by Rush University Medical Center's Institutional

Review Board (IRB). The IRB is a group charged with protecting research participant's rights. We know of no risks from participating in this study. However, if any risks to participation in this project become known or if new information comes to light that may affect your desire to participate, we will notify you in a timely manner. Your participation is voluntary.

Code numbers will be used on all of your questionnaires and audiotapes. Other than this code number, there is no way your answers on the questionnaires can be connected to you. The audio tapes will only be heard by the members of the research team. Audio tapes of you, your child and family will be erased and destroyed within 2 years after the study is completed. Your answers to questions will be entered into a computer and analyzed as part of a group of 50 parents participating this study. If the results of the study are published, your identity will not be made known. Your answers to questions will remain available forever to the investigator for future research purposes. However, only the assigned code numbers will be used for any future research so that in no way your answers can be connected to you.

The investigator is required by law to report child abuse or neglect to the Department of Children and Family Services. If you have any concerns about this or any other matter pertaining to this study, please feel free to call Charlotte Strahm, who is conducting this study, at Ms. Strahm is registered nurse and doctoral student at Rush University Medical Center. If you have any questions about the rights of research subjects please call the Office of Research Affairs at .

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APPENDIX B: Consents and Child Assent

101

Appendix B: Consents and Child Assent Sample Consents

RUSH UNIVERSITY MEDICAL CENTER Subject Information and Consent Document

Principal Investigator: Charlotte Strahm, DNSc (c), APRN, BC, Doctoral Nursing Student Phone: (cell) or (home) Addresses where research will take place: Parent interviews and recording of the morning routine will take place in the subject's home. Data processing will take place in the Principle Investigator's home office,

Title of Research Study: Parents' Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD) Sponsor: Deborah Gross, DNSc, RN, FAAN, Associate Dean for Research and Scholarship, Rush University College of Nursing

Introduction

You are being invited to take part in a research study at Rush University Medical Center. This form provides you with information so you can understand the possible risks and benefits of participating in this study; so that you can decide whether or not you want to be a part of this research study. Before deciding whether to participate in this study, you should read the information provided in this document and ask questions regarding this study. Once the study has been explained and you have had all your questions answered to your satisfaction, you will be asked to sign this form if you wish to participate.

Why are you invited to participate in this study? You are being invited to participate in this study because you have expressed interest in being involved in this study and are the family of a child between the ages of 7 to 10 years of age.

What is the purpose of this study? The purpose of this study is to describe parents' experiences raising a child with

Attention Deficit Hyperactivity Disorder (ADHD) and examine how those experiences differ from parents who raise a child without ADHD. This study will help us understand the differences in the parenting experience in raising a typical child and the child with ADHD from the parent's perspective. This understanding will aid healthcare professionals develop appropriate, supportive and effective interventions in the treatment of families impacted by ADHD. For filling out questionnaires and being audiotaped during your families daily morning experience you will receive $50.00.

How many people are expected to take part in the study?

The number of families participating in this study is estimated to include 20 families of children with ADHD receiving medication and 20 families of children with no known physical or emotional disability.

Page 1 of 4 Subject's initials

What will you be asked to do? If you wish to participate, you will need to:

1. Read and sign the enclosed "Consent Form." This form lets us know that you have been told this is a research study and you wish to participate. You will be given a copy of this form to keep.

2. Fill out questionnaires during an initial interview, during interactions with your child while being audio taping two morning experiences.

How long will you be in the study? After your sign the "Consent Form," your participation will begin. You will be asked to fill out questionnaires and audio tape two consecutive morning experiences of family interactions. The estimated time to complete your outlined tasks of the study is one week.

What are the possible risks of the study? We know of no risks from participating in this study. However, if any risks to participation in this project become known or if new information comes to light that may affect your desire to participate, we will notify you in a timely manner.

Are there benefits to taking part in the study? There may be no direct benefit to you for participating in this study. However, it is hoped that through greater understanding, health care professionals will develop interventions that not only decrease the negative effects of ADHD symptoms on families, but will also be perceived as supportive and practical for parents.

What other options are there? Participation in this research study is voluntary. The only alternative to participating in this study is not to participate. There is no penalty if you decide not to take part in this study.

What about confidentiality of your information? Records of participation in this study will be maintained and kept confidential as required by law. The audio tapes will only be heard by the members of the research team. Audio tapes of you, your child and family will be erased and destroyed within 2 years after the study is completed. Your answers to questions will be entered into a computer and

analyzed as part of a group of 40 parents participating this study. If the results of the study are published, your identity will not be made known. Your answers to questions will remain available forever to the investigator for future research purposes. However, only the assigned code numbers will be used for any future research so that in no way your answers can be connected to you.

Confidentiality and disclosure of your personal information is further described in the attachment to this form. The attachment is entitled HIPAA Authorization to Share Personal Health Information in Research (2 pages).

The Rush Institutional Review Board (IRB) will have access to your files as they pertain to this research study. The IRB is a special committee that reviews human research to check that the rules and regulations are followed. Your identity will not be revealed on any report, publication or at scientific meetings.

Page 2 of 4 Subject's initials

What are the costs of your participation in this study? There are no costs to you to participate in this study.

Will you be paid? After you complete the questionnaires and the audio taping of two morning experiences you will sent a check for $50.00. No further compensation will be provided.

Whom do you call if you have questions or problems? The investigator is required by law to report child abuse or neglect to the Department of Children and Family Services. If you have any concerns about this or any other matter pertaining to this study, please feel free to call Charlotte Strahm, who is conducting this study, at . Ms. Strahm is registered nurse and doctoral student at Rush University Medical Center. If you have any questions about the rights of research subjects please call the Research and Clinical Trials Administration at .

Page 3 of4 Subject's initials

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RUSH UNIVERSITY MEDICAL CENTER Subject Information and Consent Document

Principal Investigator: Charlotte Strahm, DNSc (c), APRN, BC, Doctoral Nursing Student Phone: (cell) or (home) Addresses where research will take place: Parent interviews and recording of the morning routine will take place in the subject's home. Data processing will take place in the Principle Investigator's home office,

Title of Research Study: Parents' Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD) Sponsor: Deborah Gross, DNSc, RN, FAAN, Associate Dean for Research and Scholarship, Rush University College of Nursing

Adult Consent Form If you wish to participate please read and sign the statement below: By signing below, you are consenting to participate in this research study. You are the parent or legal guardian of the child participating in this study. You have read the information or someone has read it to you. You have had the opportunity to ask questions, which have been answered satisfactorily to you by the study personnel. If you have any additional questions about the study or about this consent form, please contact Charlotte Strahm at ( . Questions about the rights of research participants may be addressed to the Research and Clinical Trials Administration . You are volunteering to participate based on this information. You do not waive any of your legal rights by signing this consent document. You will be given a copy of the signed and dated consent document for your record.

Name of Subject Signature of Subject Date of Signature

SIGNATURE BY THE INVESTIGATOR: I attest that all elements of informed consent described in this document have been discussed fully in non-technical terms with the subject or the subject's legally authorized representative. I further attest that all questions asked by the subject or the subject's legal representation were answered to the best of my knowledge.

Signature of the Investigator Who Obtained Consent Date of Signature

SIGNATURE BY THE WITNESS/ TRANSLATOR I observed the signing of this consent document

Signature of Witness Date of Signature

Page4of4

105

(DRUSH

Rush-Presbyterian-St. Luke's Medical Center ORA# 04032501

AUTHORIZATION TO SHARE PERSONAL HEALTH INFORMATION IN RESEARCH

Name of the Research Study: Parents' Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD)

Name of the person in charge of the Study: Charlotte Strahm, DNSc. (c), APRN

The word "you" means both the person who takes part in the research, and the person who gives permission to be in the research. This form and the attached research consent form need to be kept together.

We are asking you to take part in the research described in the attached consent form. To do this research, we need to collect health information that identifies you. We may collect the results of questionnaires and interviews. We will only collect information that is needed for the research. This information is described in the attached consent form. For you to be in this research, we need your permission to collect and share this information. We will protect the information and keep it confidential.

We will share your health information with people at the hospital who help with the research. We may share your information with other researchers outside of the hospital. We may also share your information with people outside of the hospital who are in charge of the research, pay for or work with us on the research. Some of these people make sure we do the research properly. The "confidentiality" section of this form (below) says who these people are. Some of these people may share your health information with someone else. If they do, the same laws that this hospital must obey may not protect your health information.

If you sign this form, we will collect your health information until the end of the research. We will keep all the information for two years , in case we need to look at it again for this research study. If you sign this form, we may continue to share the health information collected for this study with the people listed below for two years.

Your information may also be useful for other studies. We can only use your information again if a special committee in the hospital gives us permission. This committee may ask us to talk to you again before doing the research. But the committee may also let us do the research without talking to you again if we keep your health information private.

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You do not have to sign this form. If you decide to NOT sign this form, you cannot be in the research study. We cannot do the research if we cannot collect, use and share your health information.

If you sign this form, you are giving us permission to collect, use, and share your health information. You need to sign this form and the attached consent form (both forms) if you want to be in the research study.

If you change your mind later and do not want us to collect or share your health information, you need to send a letter to the researcher listed above. The letter needs to say that you have changed your mind and do not want the researcher to collect and share your health information. If we cannot collect and share your health information, we may decide that you cannot continue to be part of the study. We may still use the information we have already collected. We need to know what happens to everyone who starts a research study, not just those people who stay in it.

Rush Research HIPAA Authorization form/cds 3/29/04 Page 1 of 1

107

CONFIDENTIALITY

We may share your information (not your identity) with other researchers outside of the hospital. We may also share your information with people outside of the hospital who are in charge of the research, pay for, or work with us on the research. Some of these people make sure we do the research properly. For this study, we will share information with:

Richard Hug. PhD , Indiana University Northwest, Statistician, Dissertation Committee Member

Trained Research Assistants: Selected, trained and supervised by the investigator. (Currently recruiting. Identities unknown. Names will be available for subjects as available)

Any questions? Please ask the researcher or his/her staff. Their phone numbers appear in the attached consent form. You can also call at Rush with general questions about your rights and the research use of your health information. The researcher will give you a signed copy of this form.

SIGNATURE, DATE, AND IDENTITY OF PERSON SIGNING

The health information about can be collected and used by the researchers and staff for the research study described in this form and the attached consent form.

Signature: Date:

Print name: Legal authority:

Rush Research HIPAA Authorization form/cds 3/29/04 Page 2 of2

108

Appendix A Sample of Child Assent

Principal Investigator: Charlotte Strahm, DNSc (c), APRN Title of Research Study: Parents' Experience Raising a Child with Attention Deficit Hyperactivity Disorder (ADHD)

Child Assent Form Purpose: I , know that I am being asked to take part in a research study. The purpose for this study is to better understand Attention Deficit/Hyperactivity Disorder (ADHD) and families.

Procedure: The study will consist of one or two meetings with the nurse. The meetings will be at my home with my parents present. I know that the nurse will be talking with my parents. I can choose to be with my parents at these meetings.

Benefits: By being part of this study, I can help others to understand ADHD

Voluntary participation/withdrawal: I know that being in this study is my choice. I know I can quit anytime. If I want to quit I can tell the nurse or my family member. I know it is O. K. to quit. Nothing will happen to me or my family if I quit.

Questions: If I have questions about being in the study now or later on, I can ask an adult to call Charlotte Strahm at

Confidentiality: There is little risk from being in this study. My name and other facts that would identify me will be kept very private. Other than Ms. Strahm, no one who listens to the taped recordings of me and my family will know my name or where I live. I know that the nurse will need to use information from tape recordings of my family in the morning and questionnaires my parents fill out when talking about this study. The nurse will erase the tape when finished with the information.

Consent to participate in the research study: I have read or had read to me all of the above information about this research study, the procedure, possible risks and the chance of any benefits to me. The meaning of this consent form has been explained and I understand it. All my questions have been answered. I want to be in this study. I will be given a signed copy of this assent form.

Now I think I know about the study and what it means-Here is what I decided:

l~l NO, I do not want to be in the study. Q OK, I will be in the study.

Your name (printing is OK)

Witness signature Date Researcher signature Date

cds:3/29/04 Page l o f l

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APPENDIX C: Study Forms

ADHD Assessment/ Interview Guide Family Impact Questionnaire (FIQ)

Parenting Stress Index- Short Form (PSI-SF) Sample items Daily Routine Worksheet (DRW)

Audio Rating Scale

Appendix C: Sample ADHD Assessment/ Interview Guide

Ref. #_

Interviewer ADHP Assessment/Interview Guide

Parent Information; NAME/S: AGE:

AGE:

Address:_

Phone:

Please Check ONE of the following categories in each area:

Marital status: Relationship to Child: Married Biological Parent Single ___ Adoptive Parent Divorced Foster Parent Single living with partner ___ Other: Widowed Other:

Chilli's Information:

Name:

If your child has been diagnosed with ADHD, at what age was the diagnosis made? _____ If diagnosis has been within the past year, how many months has it been since you learned of this diagnosis? mo.

Has your child been diagnosed with any other illness (including medical) or disabilities? _ _ NO YES (If YES, please explain.)

Any problems during your pregnancy or birth with this child? _ _ NO YES (If YES, please explain.)

Has the child tod any known head injury? NO __,YES (If YES, please explain.)

Grade Level in school: Performance Grades:

I l l

CHILD CONTINUED(page 2)

Classroom Setting;

Educational Support: (Check all that apply)

Teacher Counselor Tutor IEP

Other: (Explain)

Comments:

Special Education Remedial

Who would you describe as a support person(s) for you? (Family, friends, church, support group)

Information Other Children: How many other children do you have? _ _ _ Living in the home

Initials Age Gender Relationship to child: (Biological, Adopted, Foster. Step, other)

Arc there any other people in your family (including yourself) who have been diagnosed with or suspected to have ADHD? If so please list below their initials and their, relationship to the child?

Initials Relationship to the Child Diagnosed: NO YES (If so when?)

Appendix C Sample Family Impact Questionnaire (FIQ)

# Child's Initials Date

Family Impact Questionnaire-R

Being a parent can be difficult, and children have different effects on the family. We would like to know what impact your child has had on the family compared to the impact other children his/her age have on their families. The following questions attempt to understand children's impact on different areas of family functioning. Please check the category that best describes your situation in terms of how things have been in general for you with reference to the child who is participating in this study.

Your feelings and attitudes about vour child

COMPARED TO CHILDREN AND PARENTS WITH CHILDREN THE SAME AGE AS MY CHILD...

1. Mv child is more stressful.

2. I enioy the time I spend with mv child more.

3. My child brings out feelings of frustration and and anger more

4. My child brings out feelings of happiness and pride more.

5. When I am with my child, I feel less effective and competent as a parent.

6. It is easier for me to play and have run with my child.

7. Mv child's behavior bothers me more.

8. Mv child makes me feel more loved.

9. I feel like I am Working alone in trying to trvine to deal with mv child's behavior.

10. Mv child makes me feel more eneraetic.

11.1 feel like 1 could be a better parent with mv child

12. My child makes me feel more confident as as a Darent.

13. 1 feel like I should have better control over his/her behavior.

14. My child does what I tell him/her to do most of the time

15. I feel like I know how to deal with my child's behavior most of the time.

Not at all Somewhat Much Verv much

The Impact afvour child on vour social life

COMPARED WITH CHILDREN AND PARENTS WITH CHILDREN THE SAME AGE AS MY CHILD...

16. My child's behavior embarrasses me in public more.

17. My family avoids social settings more (e.g. restaurants, public events) because of

his/her behavior.

18. It is more difficult to find a baby-sitter to stav with him/her.

19. My family visits relatives and friends less often than 1 would like to because of my

child's behavior.

20. My child interferes more with my opportunity to spend time with friends

21. I feel more tense when my family goes out in public, because I am worried about his/her behavior.

22. I need to explain my child's behavior to others more.

23. I participate less in community activities because of mv child's behaviors.

24. I have guests over to our house less often than I would like of because of my child's behavior.

25.1 take mv child shopping and on errands less.

The financial impact of vour child

COMPARED WITH OTHER CHILDREN MYCHILDSAGE...

26. The nost of raisins mv child is more.

27. The cost of child care is more.

28. The cost of food, clothes and/or toys is more.

29. The cost of home alterations and/or fixing and replacing items in the home is more.

30. The cost of medication, medical care and/or medical insurance is more.

31. The cost of educational and psychological services is more.

Not at all Somewhat Much Very much

32. The cost of recreational activities (e.g., music, swimming, gymnastics) is more.

Notatalli Somewhat Much, Very much

IF YOU ARE MARRIED COMPLETE THE FOLLOWING SECTION, OTHER WISE SKIP TO QUESTION NUMBER 40.

The impact ofvour child on vour marital relationship

COMPARED TO PARENTS WITH CHILDREN THE SAME AGE AS MY CHILD....

33. My spouse and I disagree more about how to raise this child.

34. My spouse is more supportive of the way I deal with mv child's behavior.

35. This child pits my spouse and me against each other more.

36. Raising this child has brought my spouse and me closer together.

37. My child causes more disagreements between mv spouse and me.

38. My spouse is less supportive of the way I deal with mv child's behavior.

39. Raising this child has pushed my spouse and me farther apart.

Not at all Somewhat Much Verv much

IF YOU HAVE OTHER CHILDREN COMPLETE THIS SECTION, OTHERWISE SKIP TO QUESTION NUMBER 49.

The impact of your child on his/her siblings

COMPARED WITH OTHER CHILDREN MY CHILD'S AGE...

40. The other children in the family help take care of him/her more.

4 i. My child prevents his/her siblings from participating in activities more.

42. The other children in the family complain about his/her behavior more.

43. The other children in the family feel more embarrassed bv his/her behavior.

44. Mv child is more reiected bv his/her siblings.

45. The other children in the family invite friends over to the house less often because of his/her behavior.

Not at all Somewhat Much Verv much

46. The other children in the family enjoy soendine time with him/her more.

47. My child uses his/her siblings' toys without asking permission more.

48. My child breaks or loses his/her siblings' tovs more.

Not at all Somewhat Much Verv much

General Questions:

49. Compared with other children my child's age, the degree of difficulty living with him/her is:

Much Easier Slightly About the Slightly More Much More Easier Easier Same More Difficult Difficult

Difficult

50. Compared with other children my child's age. the impact on our femily is:

Much Less Less Positive Positive

Slightly Less

Positive

About the Same

Slightly More

Positive

More Positive

Much More Positive

. "Reproduced by special permission of the Publisher, Sage Publications Incorporated, from the Handbook of Family Measurement Techniques by J. Touliatos, M. A. Pelmutter, B. Straus and G. W. Holden (2001) Volume 3, pages 447 - 450. Family Impact Questionnaire by G. Donenberg & B. Baker Copyright, 1993,2001. Further reproduction is prohibited without permission from Sage Publications Incorporated."

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Appendix C Sample Items from Parent Stress Index Short Form (PSI-SF)

Using the PSI-SF measurement tool, parents rated their responses to statements related to parenting with:

S A= Strongly Agree, A= Agree, NS= Not Sure, D = Disagree, and SD = Strongly Disagree.

Items included statements such as:

1. I find myself giving up more of my life than I ever expected.

2. Having a child has caused more problems than I expected in my relationship with my spouse (or male/female friend).

3. My child makes more demands on me than most children.

"Reproduced by special permission of the Publisher, Psychological Assessment Resources, Inc., 16204 North Florida Avenue, Lutz, FL 33549, from the Parenting Stress Index by Richard R. Abidin, Ed.D., Copyright 1990,1995 by PAR, Inc. Further reproduction is prohibited without permission from PAR, Inc."

Appendix C Sample of Daily Routine Worksheet (DRW)

Daily Routine and Response Worksheet

Child's Initials Parent's Initials Day_ Date_

Time child awakened this morning : Time child out of bed:

ADHD Typical Completed by For office Use Only

Time child left your supervision (e.g. went on school bus, left home, left your car or, entered school)

Time Given: Medications: Were others in the home this morning: Yes No if "yes" write their initials and relationship to the child: Was the TV on: Yes_ No

Directions: For the following daily morning tasks please place a check mark in the box that best describes how the task was completed by your child. Alone (A): Child completed the task on their own without help. With Some Help (WSH): Some help or direction needed but child was able to complete task on own. With Much Help (WMH): Child needed much help and direction from someone to complete a task. Not Completed (NC): Task was not completed even when help and direction given. Example: Child refused to complete task. * Not Expected Task (NET): The task listed was not an expected task to be completed that morning. Example: Child may not be expected to take a bath in the morning. *

*Please write in the reason task not completed in the comment area. Such as day dreaming, playing with toys, watching TV, child ignoring parent's direction.

TASK Personal care Got out of bed

Used the toilet

Took a bath or shower Brushed teeth

Combed hair

Got dressed for dav Breakfast:

Chose own meal

Ate meal

Completed meal

A WSH W M H NC NET Comments

OVER

i

TASK School Readiness:

Got Books/ School Supplies Readv

Got shoes on

Chose appropriate shoes

Got coat, hat, mittens on

Chose appropriate coat

Child left for school on time

A WSH WMH NC NET Comments

////////////////////^

Directions: Please check the response the most describes your morning experience with your child today.

1. How was this morning compared to other mornings spent with your child?

Much Better About Worse Much < Better the Worse

Same

2. The amount of time your child spent getting ready school compared to a typical day was:

Much Less About More Much Less the More

Same

3. The amount of effort you spent today helping your child get ready for school was:

Much Less About Less the

Same

More Much More

119

4. How would you rate your mood upon awakening this morning, before interacting with your child?

1

Very Good Neutral Poor Very Good Poor

5. By the time your child left for school, how would you rate your mood?

Much Better About Worse Much Better the Worse

Same

Comments:

Appendix C Sample of Audio Affect Rating Scale

(ARS)

Audio Affect Rating Seale (ARS) Family MM Date: Coder:

Instructions: For each 15 minute interval, please rate the affective tone and intensity for thisjamity interaction. Time began: Time ended:.

Positive Affective Tone

Neutral 0

Quiet Communication functional Morning routine functions completed. Neither positive or negative behaviors or tones heard.

1

Low Positive 6

Pleasant interchange among family members heard. Intensity of positive affect at low level. Occurrences of positive behaviors present a few times however not continuous over this segment of the morning routine.

Pos i t ive 5

Pleasant interchange among family members heard. Intensity moderate with positive affect present multiple tunes but does not predominate across this segment of the morning experience.

Highly Positive 4

Interactions characteristically positive. Warmth and encourage­ment present and laughter and excitement sustained throughout the interaction. Intensity of the experience is high and pervasive across this segment of the morning experience.

Negative Affective Tone

Neutral 0

Quiet Communication functional Morning routine functions completed. Neither positive or negative behaviors or tones heard.

Low Negative 3

Negative affect present Intensity of negative affect at low level. Occurrences of negative behaviors present a few times however not continuous over this segment of the morning routine.

Negative 2

Negative interchange among family members heard Child whining, crying resistive to parent direction. Loud talking, sighing, groaning heard. Parent frustration angry tone heard. Loud interchange noted, Parent use of demands or threats heard. Redirection and reminders rcpcaledtv heard. Parent and or child irritable. Intensity moderate With negative aflect present multiple times across this segment of Hie morning experience

Highly Negative 1

High occurrence of negative affect present. Negative and intense verbal interchange heard. Child exhibits oppositional behavior, yelling. tantrums. Parent heard using threat of punishment, yelling, belittling child or ptrysical intervention heard. Parent or cltild out of control. Intensity high throughout this segment of the morning experience.

Comments;

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Date/ Author's Signature