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Caring for Children with Special Healthcare Needs and Their Families : A Handbook for Healthcare Professionals,9780813820828

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

by
Edition:
1st
ISBN13:

9780813820828

ISBN10:
0813820820
Format:
Paperback
Pub. Date:
4/22/2013
Publisher(s):
Wiley-Blackwell
List Price: $61.99

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Summary

Caring for Children with Special Healthcare Needs and Their Families: A Handbook for Healthcare Professionals provides a guide for addressing the challenges of providing optimal general and routine care for the special needs population. More than just caring for the patients, the text stresses the importance of caring for their families as well. The book begins with chapters on common aspects of this population, including physical or sensory disabilities and developmental and learning disabilities. Subsequent chapters expound on more specific topics related to communication, mobility, emotional issues, quality of life, and end-of-life. Caring for Children with Special Healthcare Needs and Their Families is a must-have book for family and pediatric nurse practitioners, registered nurses, healthcare technicians, physician assistants and social services professionals who see these patients regularly as part of their daily patient load.

Author Biography

Linda L. Eddy, Ph.D., RN, CPNP, is Associate Professor for the College of Nursing at Washington State University in Vancouver, Washington, USA.

Table of Contents

Contributors xv

1 Introduction 3

Linda L. Eddy

2 Common Physical or Sensory Disabilities 9

Mary C. Sobralske

Cerebral Palsy 11

Diagnosis, etiology, and risk factors of CP 11

Presenting signs and symptoms of CP 13

Classification of CP 14

Prognosis and complications 15

Common pharmacologic and non-pharmacologic therapies 16

Role of nursing 18

Roles of occupational and physical therapy 19

Roles of speech and language therapy 20

Roles of social work and psychology 21

Transition to adulthood 21

Neural Tube Defects (Myelodysplasia/Spina Bifida) 23

Etiology 23

Presenting signs and symptoms 24

Prognosis 25

Common pharmacologic and non-pharmacologic therapies 25

Roles of nursing 27

Occupational and physical therapy 27

Speech and language therapy 28

Social work and psychology 29

Transition to adulthood 29

Muscular Dystrophy 29

Etiologies of muscular dystrophy 30

Presenting signs and symptoms 30

Prognosis 31

Common pharmacologic and non-pharmacologic therapies 31

Roles of nursing 32

Occupational and physical therapy 33

Speech and language therapy 33

Social work and psychology 34

Traumatic Brain Injury 34

Etiologies 34

Presenting signs and symptoms 34

Prognosis 35

Common pharmacologic and non-pharmacologic therapies 35

Roles of nursing 35

Occupational and physical therapy 36

Speech and language therapy 36

Spinal Cord Injury 36

Etiologies 36

Prognosis 37

Presenting signs and symptoms 37

Common pharmacologic and non-pharmacologic therapies 37

Roles of healthcare providers 38

Occupational, physical, and speech therapies 40

Social work and psychology 40

Children with Deafness and Hearing Impairment 41

Etiology of deafness 41

Presenting signs and symptoms 42

Prognosis 43

Common pharmacologic and non-pharmacologic therapies 43

Role of nursing 44

Occupational and physical therapy 45

Speech and language therapy 45

Social work and psychology 46

Children with Blindness and Visual Impairment 46

Etiology 47

Presenting signs and symptoms 47

Prognosis 48

Common pharmacologic and non-pharmacologic therapies 48

Role of nursing 48

Occupational and physical therapy 49

Speech and language therapy 50

References 50

Online Resources 54

3 Common Developmental/Learning Disabilities 57

Linda L. Eddy

The Child with Attention Deficit/Hyperactivity Disorder 59

Definition and presenting signs and symptoms 59

Etiology 59

ADHD in preschoolers 60

ADHD in school-aged children and adolescents 60

Psychopharmacologic management of ADHD 61

Psychotherapeutic/behavioral management of ADHD (NIMH, 2008) 62

Application to nursing and multidisciplinary practice 63

The Child with Intellectual Disability 63

Definition and presenting signs and symptoms 63

Prevalence of intellectual disability 63

Etiology 64

Diagnosis 64

Down Syndrome as Exemplar of Intellectual Disability 65

Application to clinical practice 66

The Child with An Autism Spectrum Disorder 66

Definition and presenting signs and symptoms 66

Prevalence of ASDs 66

Diagnosis 67

Application to clinical practice 68

MIA – A Child with Down Syndrome 68

References 69

4 Caring for Children with Feeding and Communication Differences 71

Lisa Lyons

Overview of Early Feeding Skills 74

Developmental feeding milestones: Gestational period through age 7 74

Overview of Early Communication Skills 76

Developmental communication milestones infancy through age 7 76

Screening of Early Feeding and Communication Skills 78

Impaired feeding skills 78

Impaired communication skills 80

Referral and Management: Audiologists and Speech-Language Pathology Professions 83

References 85

5 Caring for Children with Mobility Differences 87

Jeannine Roth

What Is Mobility? 89

The International Classification of Functioning, Disability and Health (ICF) 89

Participation and Functional Ability 90

Assistive technology 93

Gait analysis 94

What Can Nurses do to Help Children with Disabilities? 94

Conclusion 95

References 95

6 Caring for the Child with Special Social and Emotional Needs 97

Sheela M. Choppala-Nestor with Portia Riley

Introduction 99

Structure of this Chapter 99

Etiological Theories 99

The Process of Child Assessment and Intervention 101

The salience of rapport building to the process 101

Systematic data gathering 102

Analysis of data gathered 104

Intervention 106

The Interdisciplinary Team: A Critical Aspect of the Intervention 107

Case Reviews of Select Disorders 107

Autism Spectrum Disorders (ASDs) 107

Social phobia 109

Anorexia nervosa 110

Major depressive disorder 111

Other Conditions 113

Attention deficit and hyperactivity disorder 113

Substance abuse 113

Post-traumatic stress disorder 114

Conclusion 114

References 114

7 Legal and Regulatory Issues 117

Ginny Wacker Guido

Introduction 119

Children with Disabilities and the Law 120

Individuals with Disabilities Educational Act 120

No Child Left Behind Act 123

Americans with Disabilities Act of 1990 125

Ethical Issues in Caring for Children with Disabilties 126

Laws Affecting the Education of Disabled Children and the Healthcare System 128

Conclusion 130

References 130

Resources for Parents 131

8 Use of Theories to Guide Practice 133

Linda L. Eddy

Individual Theories 135

Physical growth and development 135

Erikson’s theory of psychosocial development 135

Piaget’s theory of cognitive development 138

Family Theories 139

Family life course perspective (developmental family theory) 140

Systems theory 141

Basic systems terminology 141

Family ecological theory 142

Terminology 142

Resources 143

Family assessment guidelines 143

Family genograms and ecomaps 144

References 148

9 Enhancing Quality of Life For Children with Special Healthcare Needs 149

Linda L. Eddy

Quality of Life Defined 151

Decreasing Pain 152

Pain assessment 152

Pain management in children with special needs 154

Pain assessment and management specific to children with special needs 154

Decreasing Fatigue 155

Resources 157

References 157

10 Impact on Family and Increasing Family Well-Being 161

Linda L. Eddy

Family Well-Being 163

Subjective Well-Being in Parents of Children with Disabilities 164

Linking Family Well-Being to Child Well-Being 166

Family Diversity and Well-Being 167

Making a Difference: Family Interventions 168

Culturally sensitive interventions 168

Flexible interventions 169

References 170

11 Public Health and School Health Nursing of Children with Special Healthcare Needs 173

Phyllis Eide

Community Health Nursing with Children with Special Health Needs 175

Public Health and Children with Special Health Needs 175

Public Health and Community Health Programs Serving this Special Needs Population 176

Community Health Nursing Roles with Children with Special Health Needs 178

Case Management with Children with Special Health Needs 180

Evidence-Based Home Visiting Programs for Children with Special Health Needs 183

The Child with Special Needs in the School Setting 185

Conclusion 187

References 188

12 End-of-Life Care for Children with Special Needs and Their Families 191

Janet A. Lohan

Children’s Understanding of Death 193

Difficult Conversations About Death and Dying with Children and Their Families 201

Providing Crisis Intervention for Families and Peers After a Child Dies 208

Resources 216

For parents 216

For children 217

For caregivers 217

For parents 217

For children and adolescents 218

References 218

13 Assessment, and Development of an Interprofessional Plan of Care 221

Nancy Lowry and Patricia Shaw

The Assessment Process 224

Preparing for your visit with the family 224

Practice tips: Finding reliable information on the Internet 225

Cultural considerations and the use of interpreters 226

Practice Tip: The following tips can be useful when working with an interpreter:(Lipson & Dibble, 2005; CaCoon Program Manual, 2012) 227

Family engagement–Getting to know the family and child 228

Practice Tip: Strategies to facilitate an effective relationship with families 229

The assessment process 230

Common issues in children with special needs 231

Developing a Plan of Care 235

Key components of a care plan 235

Role of the care coordinator in developing and carrying out the plan of care 235

Example of a problem and possible interventions 236

Documentation and the use of electronic health records 237

Practice tip: What to include in the EHR 238

Documentation of care coordination activities 238

A note about electronic health records (EHRS) 240

Other Recommended Resources 241

References 241

Other Recommended Readings 242

Index 245



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