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

Contributors xv 1 Introduction 3Linda L. Eddy 2 Common Physical or Sensory Disabilities 9Mary 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 57Linda 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 71Lisa 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 87Jeannine 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 97Sheela 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 117Ginny 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 133Linda 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 149Linda 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 161Linda 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 173Phyllis 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 191Janet 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 221Nancy 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