Phenomenological Study of the Experience of Parent Advocates of Students Diagnosed with ...

192 Pages·2013·1.43 MB·English

Phenomenological Study of the Experience
of Parent Advocates of Students Diagnosed with ADHD

A DISSERTATION
SUBMITTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF MINNESOTA
BY

Melissa Peterson-Malen

IN PARTIAL FULFILLMENT OF THE REQUIREMENTS
FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

Dr. Rosemarie Park, Adviser

August 2013
© 2013 Melissa Peterson-Malen
Acknowledgements
First, I would like to thank Dr. Rosemarie Park and Dr. Jim Brown, my adviser
and committee chair, for their kind and enduring support and encouragement over the
years. Each has offered very meaningful mentoring and guidance that has always
resulted in improved clarity and confidence. I hope to follow your lead and be a warm yet
achievement oriented mentor to students one day as well.
Second, I would like to thank Dr. Cathy Twohig and Dr. James Bequette for their
inspiration and example as dedicated professors who readily engage students.
Third, heartfelt thanks to my husband Peter who has been my oak tree, standing
by me and encouraging me to complete this doctoral program. To Mom, thanks for
taking care of Alex and Lydia during my seemingly endless hours as a student. And to
Alex and Lydia, thank you for the most wonderful experience of being your mother.
Last, I would like to dedicate this work to my son Alex whose amazing spirit and
boundless energy have given me the experience of becoming a parent advocate of a high
energy child in school. Alex’s first steps, a sprint across the living room at 8.5 months
old, sparked my parent advocate journey where I followed as he ran, jumped, climbed,
skidded, collided and screeched his way into school. Not surprisingly, he left in his high
speed wake alarmed teachers, parents and peers, most of whom were quick to label him
as an ADHD student. Alex has inspired me to become the most supportive, fair and
effective parent advocate possible. My decade of doctoral study is in essence my self-
help journey toward developing myself as a parent advocate for Alex. Interestingly, he
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now behaves maturely, is taller than me and through his intellectual intensity motivates
me to learn about the experience of other parent advocates.

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Reflections on Experience

“What matters in life is not what happens to you but what you remember and how you
remember it.” -Gabriel Garcia Marquez, Nobel Prize winning author

“I never painted dreams, I painted my own reality.” -Frida Kahlo, Mexican Painter &
Activist
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Abstract
Advocates of students with ADHD in the school system are usually parents who
must become advocates in response to the child’s need for support and a call for parental
involvement from the school. Parent advocates are confronted with many challenges, the
primary being the daunting, often solitary task of advocating for a child who is often
viewed by teachers and peers as unruly, disrespectful and underachieving. Resources
available to parent advocates include legal and medical resources regarding ADHD
which are regularly resourced to advocates by advocacy organizations and clinicians.
Topics include medical diagnosis, treatment and educational rights and planning for
ADHD students. In addition, a set of more diverse ADHD resources exists in the
literature that discusses various influences on student behavior and achievement that
parent advocates can consider in combination or in place of medical and educational
ADHD resources. Diverse ADHD resources present a breadth of information ranging
from misdiagnosis of ADHD to conditions that contribute to inattentive student behavior
such as giftedness, physiology (including the impact of brain maturation, dietary omega-
3, ferratin levels, pediatric sensory issues, and eye conditions), environment and exercise.
This study uses a phenomenological research method to further understand the
experience of parent advocates, specifically by interviewing parent advocates of students
with ADHD in school. Findings include several themes organized in the following four
categories: 1) Identifying and Treating ADHD in the School Context, 2) ADHD
Advocates Need more Support from Schools, 3) Advocate Experience with the School is
a Swinging Pendulum and 4) Advocates Struggle to Pave a Path for Success.
Recommendations for further research include qualitative research to further understand
parent advocate experience in identifying and treating ADHD in the school context,
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specifically to understand the impact on advocate interpretation of ADHD-type behaviors
after being presented with a list of non-ADHD conditions the precipitate ADHD-type
behaviors. In addition, quantitative research is recommended to gather data regarding
what advocates need in support from schools as they work to pave a path for success for
their children.
The work presented in this thesis explores the experience of parent advocates of
students with ADHD in school in an effort to understand and improve parent advocate
experience.
Keywords: ADD ADHD & advocate, ADD ADHD & parent, ADD ADHD & parent
& stress, ADD ADHD & misdiagnosis, ADD ADHD & Gifted, ADD ADHD &
brain, ADD ADD ADHD & late brain maturation, ADD ADHD & physiology, ADD
ADHD & physiology, ADD ADHD and iron, ADD ADHD & omega 3, and ADD
ADHD & green space, ADD ADHD & exercise.

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Table of Contents
Acknowledgements……………………………………………………………………...…i
Reflections on Experience………………………………………………………….……..ii
Abstract…………………………………………………………………………...………iv
CHAPTER 1. Introduction……………………………………………………………….1
Study Focus………………………………………………………………….……1
Purpose of Study…………………………………………………………………21
Problem Statement……………………………………………………………….24
Significance of the Problem……………………………………………………..24
Statement of the Research Questions……………….………….………………..25
Qualifications of the Researcher………………………………………………....25
Definition of Terms………………………………………………………………26
Summary…………………………………………………………………………29
CHAPTER 2. Review of the Literature………………………………………………….31
Introduction……………………………………………………………………....31
Major Resources on ADHD Students and School Resourced by PACER Center
and ICI……………………………………………….………………………..…36
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Standard Resources on ADHD Students & School, Resourced in Published
Literature……………………….……………………………………………...…40
More Diverse Resources on ADHD Students & School, Resourced in Published
Literature…………………………………………………………….….…….….47
Summary……………………………………………….……….………..65
CHAPTER 3. Research Design and Methodology…………….……………..…………65
Overview of Resources Available for Advocates of Students Diagnosed with
ADHD……………………………………………………………………………65
Research Methodology……………………………………………..……………67
Phenomenology………………………………………………………………......69
Phenomenological Method……………………………………………………....70
Analysis………………………………………………………………………….71
Selection of Participants……….…………………………………………...……73
Treatment of Data………………………………………………………….…….75
Data Analysis Process…………………………………………………………...76
Summary…………………………………………………………………….…..77
CHAPTER 4. Analysis……………………………………………………………….….78
Analysis of Researcher Bias……………………………………………………..78
Analysis of Participant Interviews……………………………………………….86
Category One: Identifying and Treating ADHD in the School Context…………87
Category Two: ADHD Advocates Need more Support from Schools…………..94
Category Three: Advocate Experience with the School is a Swinging
Pendulum………………………………………………………………………...98
Category Four: Advocates Struggle to Pave a Path for Success………………..120
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CHAPTER 5. Discussion and Recommendations…………………………….………..128
Category One: Identifying and Treating ADHD in the School Context………..128
Category Two: ADHD Advocates Need more Support from Schools………....135
Category Three: Advocate Experience with the School is a Swinging
Pendulum…………………………………………………………………….....138
Category Four: Advocates Struggle to Pave a Path for Success………………..141
Conclusion……………………………...………………………………………145
Implications……………………………………………………………………..145
Recommendations for Future Research……………...…………………………147
References………………………………………………………………………………153
APPENDIX A. Research Request Letter…………………………………………….…163
APPENDIX B. Interview Analysis Themes……………………………...……………167
APPENDIX C. Section 8 IRB Application…………………………………………….169
APPENDIX D: Interview Question Guide……………………………………………..181
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