Caring for Children with Special Healthcare Needs and Their Families
A Handbook for Healthcare Professionals
By: Linda L. Eddy (Editor)
eBook | 22 April 2016 | Edition Number 1
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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.
Industry Reviews
"Although written for healthcare providers, the book is geared more for advanced practice nurses. It is recommended as a supplement to references on children with special healthcare needs." (Doody's, 23 May 2014)
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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
ISBN: 9781118517970
ISBN-10: 1118517970
Published: 22nd April 2016
Format: ePUB
Language: English
Number of Pages: 272
Audience: Professional and Scholarly
Publisher: Wiley
Country of Publication: US
Edition Number: 1