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Caring for children with special heathcare needs and their families

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Edited by Linda L. Eddy

Caring for Children with
Special Healthcare Needs
and Their Families
A HANDBOOK
FOR HEALTHCARE
PROFESSIONALS

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Caring for Children with Special Healthcare
Needs and Their Families

A Handbook for Healthcare Professionals



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CARING FOR CHILDREN WITH SPECIAL
HEALTHCARE NEEDS AND THEIR FAMILIES
A Handbook for Healthcare Professionals

Editor
Linda L. Eddy, PhD, RN, CPNP
Associate Professor
College of Nursing
Washington State University
Vancouver, Washington, USA

A John Wiley & Sons, Inc., Publication

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This edition first published 2013

C

2013 by John Wiley & Sons, Inc.

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Library of Congress Cataloging-in-Publication Data
Caring for children with special healthcare needs and their families : a handbook for healthcare
professionals / editor, Linda L. Eddy, PhD, RN, CPNP, associate professor, College of Nursing,
Washington State University Vancouver, Vancouver, Washington, USA.
pages cm
Includes bibliographical references and index.
ISBN 978-0-8138-2082-8 (pbk. : alk. paper) – ISBN (invalid) 978-1-118-51794-9 (emobi) –
ISBN 978-1-118-51796-3 (epdf/ebook) – ISBN 978-1-118-51797-0 (epub) 1. Children with
disabilities–Care. 2. Parents of children with disabilities 3. Child health services.
I. Eddy, Linda L., editor of compilation.
RJ138.C43 2013
362.4–dc23
2012039435
A catalogue record for this book is available from the British Library.
Wiley also publishes its books in a variety of electronic formats. Some content that appears in
print may not be available in electronic books.
Cover design by Nicole Teut
Set in 10/12.5pt Sabon by Aptara R Inc., New Delhi, India
1 2013


This book is dedicated to my son, Erik, without whom this book would not
have come to be. Erik was born in 1980 with severe physical and
developmental disabilities and it was through him that I learned the most
important lessons about caring for children with disabilities, and about
helping their parents take care of themselves and others in their lives. These
lessons were learned, in part, through painful losses and hard fought personal
and professional battles. Erik was the inspiration and catalyst for my 26-year
academic and primary care practice career with children with disabilities and
their families. My hope is that my healthcare colleagues and friends, as well as
interested families and caregivers, will benefit from what I have learned, as
well as from the contributions of my colleagues who have also benefitted from
the children and families who have graced their lives.



CONTENTS
Contributors

xv

1 Introduction
Linda L. Eddy

3

2 Common Physical or Sensory Disabilities
Mary C. Sobralske

9

Cerebral Palsy
Diagnosis, etiology, and risk factors of CP
Presenting signs and symptoms of CP
Classification of CP
Prognosis and complications
Common pharmacologic and non-pharmacologic therapies
Role of nursing
Roles of occupational and physical therapy
Roles of speech and language therapy
Roles of social work and psychology
Transition to adulthood
Neural Tube Defects (Myelodysplasia/Spina Bifida)
Etiology
Presenting signs and symptoms
Prognosis
Common pharmacologic and non-pharmacologic therapies
Roles of nursing
Occupational and physical therapy
Speech and language therapy
Social work and psychology
Transition to adulthood
Muscular Dystrophy
Etiologies of muscular dystrophy
Presenting signs and symptoms
Prognosis
Common pharmacologic and non-pharmacologic therapies
Roles of nursing
Occupational and physical therapy
Speech and language therapy
Social work and psychology
Traumatic Brain Injury
Etiologies
Presenting signs and symptoms
Prognosis
Common pharmacologic and non-pharmacologic therapies

11
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viii

Contents

Roles of nursing
Occupational and physical therapy
Speech and language therapy
Spinal Cord Injury
Etiologies
Prognosis
Presenting signs and symptoms
Common pharmacologic and non-pharmacologic therapies
Roles of healthcare providers
Occupational, physical, and speech therapies
Social work and psychology
Children with Deafness and Hearing Impairment
Etiology of deafness
Presenting signs and symptoms
Prognosis
Common pharmacologic and non-pharmacologic therapies
Role of nursing
Occupational and physical therapy
Speech and language therapy
Social work and psychology
Children with Blindness and Visual Impairment
Etiology
Presenting signs and symptoms
Prognosis
Common pharmacologic and non-pharmacologic therapies
Role of nursing
Occupational and physical therapy
Speech and language therapy
References
Online Resources
3 Common Developmental/Learning Disabilities
Linda L. Eddy
The Child with Attention Deficit/Hyperactivity Disorder
Definition and presenting signs and symptoms
Etiology
ADHD in preschoolers
ADHD in school-aged children and adolescents
Psychopharmacologic management of ADHD
Psychotherapeutic/behavioral management of ADHD (NIMH,
2008)
Application to nursing and multidisciplinary practice
The Child with Intellectual Disability
Definition and presenting signs and symptoms
Prevalence of intellectual disability

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Contents

ix

Etiology
Diagnosis
Down Syndrome as Exemplar of Intellectual Disability
Application to clinical practice
The Child with An Autism Spectrum Disorder
Definition and presenting signs and symptoms
Prevalence of ASDs
Diagnosis
Application to clinical practice
MIA – A Child with Down Syndrome
References

64
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4 Caring for Children with Feeding and Communication Differences
Lisa Lyons

71

Overview of Early Feeding Skills
Developmental feeding milestones: Gestational period through
age 7
Overview of Early Communication Skills
Developmental communication milestones infancy through
age 7
Screening of Early Feeding and Communication Skills
Impaired feeding skills
Impaired communication skills
Referral and Management: Audiologists and Speech-Language
Pathology Professions
References

74

5 Caring for Children with Mobility Differences
Jeannine Roth
What Is Mobility?
The International Classification of Functioning, Disability and
Health (ICF)
Participation and Functional Ability
Assistive technology
Gait analysis
What Can Nurses do to Help Children with Disabilities?
Conclusion
References
6 Caring for the Child with Special Social and Emotional Needs
Sheela M. Choppala-Nestor with Portia Riley
Introduction
Structure of this Chapter
Etiological Theories
The Process of Child Assessment and Intervention

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x

Contents

The salience of rapport building to the process
Systematic data gathering
Analysis of data gathered
Intervention
The Interdisciplinary Team: A Critical Aspect
of the Intervention
Case Reviews of Select Disorders
Autism Spectrum Disorders (ASDs)
Social phobia
Anorexia nervosa
Major depressive disorder
Other Conditions
Attention deficit and hyperactivity disorder
Substance abuse
Post-traumatic stress disorder
Conclusion
References
7 Legal and Regulatory Issues
Ginny Wacker Guido
Introduction
Children with Disabilities and the Law
Individuals with Disabilities Educational Act
No Child Left Behind Act
Americans with Disabilities Act of 1990
Ethical Issues in Caring for Children with Disabilties
Laws Affecting the Education of Disabled Children and the
Healthcare System
Conclusion
References
Resources for Parents
8 Use of Theories to Guide Practice
Linda L. Eddy
Individual Theories
Physical growth and development
Erikson’s theory of psychosocial development
Piaget’s theory of cognitive development
Family Theories
Family life course perspective (developmental family theory)
Systems theory
Basic systems terminology
Family ecological theory
Terminology

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Contents

xi

Resources
Family assessment guidelines
Family genograms and ecomaps
References
9 Enhancing Quality of Life For Children with Special Healthcare
Needs
Linda L. Eddy
Quality of Life Defined
Decreasing Pain
Pain assessment
Pain management in children with special needs
Pain assessment and management specific to children with
special needs
Decreasing Fatigue
Resources
References

143
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149
151
152
152
154
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155
157
157

10 Impact on Family and Increasing Family Well-Being
Linda L. Eddy

161

Family Well-Being
Subjective Well-Being in Parents of Children
with Disabilities
Linking Family Well-Being to Child Well-Being
Family Diversity and Well-Being
Making a Difference: Family Interventions
Culturally sensitive interventions
Flexible interventions
References

163

11 Public Health and School Health Nursing of Children with Special
Healthcare Needs
Phyllis Eide
Community Health Nursing with Children with Special Health
Needs
Public Health and Children with Special Health Needs
Public Health and Community Health Programs Serving this
Special Needs Population
Community Health Nursing Roles with Children
with Special Health Needs
Case Management with Children with Special
Health Needs
Evidence-Based Home Visiting Programs for Children with Special
Health Needs

164
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169
170
173

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xii

Contents

The Child with Special Needs in the School Setting
Conclusion
References
12 End-of-Life Care for Children with Special Needs and Their
Families
Janet A. Lohan
Children’s Understanding of Death
Difficult Conversations About Death and Dying
with Children and Their Families
Providing Crisis Intervention for Families and Peers After a Child
Dies
Resources
For parents
For children
For caregivers
For parents
For children and adolescents
References

185
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193
201
208
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216
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13 Assessment, and Development of an Interprofessional Plan of Care
Nancy Lowry and Patricia Shaw

221

The Assessment Process
Preparing for your visit with the family
Practice tips: Finding reliable information
on the Internet
Cultural considerations and the use of interpreters
Practice Tip: The following tips can be useful when working
with an interpreter:(Lipson & Dibble, 2005; CaCoon Program
Manual, 2012)
Family engagement–Getting to know the family and child
Practice Tip: Strategies to facilitate an effective relationship with
families
The assessment process
Common issues in children with special needs
Developing a Plan of Care
Key components of a care plan
Role of the care coordinator in developing and carrying out the
plan of care
Example of a problem and possible interventions
Documentation and the use of electronic health records
Practice tip: What to include in the EHR
Documentation of care coordination activities
A note about electronic health records (EHRS)

224
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226

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235
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237
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240


Contents

xiii

Other Recommended Resources
References
Other Recommended Readings
Index

241
241
242
245



CONTRIBUTORS
Sheela M. Choppala-Nestor, PhD,
PMHNP-BC, APRN
Clinical Director
Associates for Psychiatric and
Mental Health, LLC
Vancouver, Washington, USA
Phyllis Eide, PhD, MPH, MN,
APRN-BC
Associate Professor
College of Nursing
Washington State University
Spokane, Washington, USA
Linda L. Eddy
Associate Professor
College of Nursing
Washington State University
Vancouver, Washington, USA
Ginny Wacker Guido, JD, MSN,
RN, FAAN
Regional Director for Nursing and
Assistant Dean
College of Nursing
Washington State University
Vancouver
Vancouver, Washington, USA

Lisa Lyons, Ph.D., CCC-SLP
Legacy Health System
Portia Riley, MFT, LMHC
Family Therapist
Hospital Intake Coordinator
Community Services Northwest
Vancouver, Washington, USA
Jeannine Roth, RN, MSN, CPN
College of Nursing
Washington State University
Vancouver, Washington, USA
Patricia Shaw RN, BSN
Program Manager
Children with Special Health Care
Needs Program
Clark County Public Health
Vancouver, Washington, USA
Mary C. Sobralske, PhD, RN
Family Nurse Practitioner
Shriners Hospitals for ChildrenHonolulu, Hawaii
Spokane, Washington USA

Janet A. Lohan, Ph.D., RN, CPN
Clinical Associate Professor
College of Nursing
Washington State University
Spokane, Washington, USA
Nancy Lowry MN, RN
Public Health/Community
Consultant
Oregon Center for Children &
Youth with Special Health Needs
Oregon Health & Science University
Portland, Oregon, USA
xv



Caring for Children with Special Healthcare
Needs and Their Families
A Handbook for Healthcare Professionals


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CHAPTER 1

INTRODUCTION
Linda L. Eddy

Caring for Children with Special Healthcare Needs and Their Families: A Handbook for Healthcare
Professionals, First Edition. Edited by Linda L. Eddy.
© 2013 John Wiley & Sons, Inc. Published 2013 by John Wiley & Sons, Inc.

3



5

In 2010, data from the national Survey of Children with Special Health Care
Needs indicated that approximately 15% of children in the United States had
special healthcare needs. With a population this large, it is likely that most
pediatric healthcare professionals will have occasion to care for this population
of children and their families in a variety of outpatient and inpatient settings
in the community. Many clinicians, however, have limited experience with
meeting the needs of children with disabilities and may feel uncomfortable
with their care. Clinicians can significantly influence overall health and wellbeing by offering interventions that influence the well-being, levels of support,
and stress levels of both children with disabilities and their parents. Taking
a family approach is important not only for the adults but also because of
the link between child well-being and parent well-being. Thus, the goal of
this handbook is to provide a resource that is easily accessible to clinicians
from a variety of disciplines, and that offers concrete, practical suggestions for
caring for children with physical, sensory, developmental, communication, and
social/emotional challenges. This text is likely to be of benefit to professionals
from the fields of nursing, social work, physical therapy, occupational therapy,
and speech therapy, among others. Although the primary focus of the handbook
is on caring for children with disabilities in the United States, the organizing
frameworks and major concepts presented in each chapter have cross-cultural
relevance. We hope that this handbook will meet the needs of clinicians in
practice. For this reason, the chapters are presented in an expanded outline
format so that key material can be easily accessed, and each chapter offers
suggested interventions that are highlighted.
The handbook is organized into three main content areas:

r Chapters 2 and 3 examine common features of a variety of physical, sensory,
and developmental disabilities. Descriptions include etiologies, presenting
signs and symptoms, prognosis, common therapies, and an introduction to
roles of healthcare providers that are often a part of interprofessional teams
caring for children with disabilities.

r Chapters 4 through 6 shift the focus away from recognizing and understanding a particular disability and toward specific interventions addressing
differences common to children with a variety of special needs, including
differences in community, mobility, and social/emotional status.

r Chapters 7 through 13 broaden the scope to inform clinicians about crosscutting issues affecting children with disabilities in a variety of settings. We
address the role of the family as client, legal and regulatory issues, theoretical
bases for quality care, enhancement of the child’s and family’s quality of life,
the role of public health and school nursing professionals, end-of-life care,
care planning, and coordination of care.

INTRODUCTION

Chapter 1 Introduction


INTRODUCTION

6

Caring for Children with Special Healthcare Needs and Their Families

We hope that by moving from a narrow focus on specifics to a broader perspective of the child and family in a variety of contexts that we are able to meet
both immediate and longer-term needs of clinicians in practice. Throughout
the handbook, the editor offers case examples from her practice as a pediatric
nurse practitioner. One case in particular, from the editor’s practice as a pediatric nurse practitioner with children with special needs, offers a number of
promising practices for high-quality care of children with special needs and
their families, as well as examples of challenges inherent in caring for this population. Exemplars of practice, such as this case, will be referenced throughout
the remainder of the text.

r This is the story of Mia and her family. Mia is a five-year-old child with
Down Syndrome who came into our outpatient pediatric clinic because of
complaints of ear pain. Our staff was very familiar with Mia and very comfortable with her mother’s knowledge about otitis media. I examined her,
prescribed an antibiotic, and did the necessary teaching for safe administration. Although as pediatric primary care providers we often choose a “watch
and wait” approach to treatment of otitis media in typically developing
five-year-olds, children with Down Syndrome have some anatomical differences in the ear that put them at greater risk from complications related to
otitis media.
What I did less well was to inquire about the family system, and how they
were adjusting to her diagnosis of Down Syndrome and all that entails. This
memory stays with me many years later, as I have a child with severe disabilities and those early years were devastating to our family. Still, probably due
to “being too busy,” I did not take the time to make sure all was well. The
next time I saw the family in the clinic all was clearly not well. Even though
Mia presented with a similar complaint, her ears were fine but her family
was not. This time her father was with Mia and her mother, and there was
noticeable tension in the room. After assuring the family that Mia’s ears were
not infected, I asked “how is everything else going?” At this point, Mia’s
mother burst into tears, her father grabbed her, and they walked out of the
examination room. Mia’s mother told me that they had just received a letter
from their local public school that outlined Mia’s special education setting
for her kindergarten year that fall. Apparently (and unsurprisingly) Mia’s
mother had been receiving lots of support from other parents of children
with disabilities, but her father had been more or less denying the diagnosis
and talking about her future as if the Down Syndrome did not exist. The
letter from the school system eroded his denial and he was very angry. At this
point in the encounter, one of my colleagues played with Mia in the waiting
room and I spent time listening to Mia’s parents talk and grieve, helping
them make plans to move on. I was able to make some referrals for counseling and support that they requested, as well as help them develop a plan for
respite care so that they might strengthen their ties as a couple. If I had only
done this on the previous visit, this visit might have been unnecessary.


7

Although the first encounter demonstrates the importance of understanding
growth and developmental differences in order to provide appropriate health
promotion and disease prevention education for Mia, as well as the important role of the family as the context for high-level wellness in the child, the
second encounter demonstrates a higher level of care with the entire family as
the client.

INTRODUCTION

Chapter 1 Introduction


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