Family Resilience and Chronic Illness: Interdisciplinary and Translational Perspectives (Emerging Issues in Family and Individual Resilience Book 0)

This interdisciplinary volume offers theoretical, empirical, and practical insights into the strengths of families beset by chronic health issues. Featuring topics that run the lifespan from infancy to late adulthood, its coverage reflects both the diversity of family challenges in long-term illness and the wealth of effective approaches to intervention. The component skills of resilience in life-changing circumstances, from coping and meaning making to balancing care and self-care, are on rich display in a framework for their enhancement in therapy. The book’s expert contributors include tools to aid readers in the learning and teaching of concepts as they model respectful, meaningful research methods and ethical, non-judgmental practice. Among the topics covered: * Helping families survive and thrive through the premature birth of an infant. Enhancing coping and resiliency among families of individuals with sickle cell disease. * A family science approach to pediatric obesity treatment. * Risk and resilience of children and families involved with the foster care system. * Strengthening families facing breast cancer: emerging trends and clinical recommendations. * The unfolding of unique problems in later life families. With its mix of practical and empirical expertise, __Family Resilience and Chronic Illness: Interdisciplinary and Translational Perspectives__ has much to offer both researchers in the family resilience field and mental health practitioners working with clients with chronic illness. Dedication 6 Preface 8 Acknowledgements 10 Contents 12 About the Editors 14 Contributors 16 Chapter 1: Using a Life-World Approach to Understand Family Resilience 18 1.1 How the Study of Life-World Contributes to Resilience Theory 19 1.2 Interpreting Family Responses to the Challenges of Chronic Illness 23 1.2.1 Resilience in Family Caring Practices with Schizophrenia 24 1.2.2 Family Resilience in Dementia 29 1.2.3 Family Resilience in Sudden Death 30 1.3 Discussion and Implications 31 Discussion Questions 34 References 34 Chapter 2: The Experience of Preterm Birth: Helping Families Survive and Thrive 35 2.1 Medical Issues Related to Premature Birth 36 2.2 The NICU Experience for the Family 37 2.2.1 The Infant NICU Experience 38 2.2.2 The Parent NICU Experience 38 2.2.3 The Infant and Parent Relationship in the NICU 39 2.3 Building Resilience 41 2.3.1 Building Resilience While in the NICU 42 2.3.2 Building Resilience in Transition 43 2.3.3 Transition to Community Providers 44 2.3.4 Home Visits 46 2.3.5 Medical Home 46 2.4 Child Maltreatment and Caregiving Burden for NICU Graduates 47 2.5 Developmental Outcomes 48 2.6 Chronic Conditions 50 2.7 Conclusions 51 Discussion Questions 51 References 52 Chapter 3: Enhancing Coping and Resilience Among Families of Individuals with Sickle Cell Disease 55 3.1 Medical Complications and Treatments 56 3.1.1 Medical Management of SCD 57 3.1.2 Prognosis Among Individuals with SCD 58 3.2 Neurocognitive Effects 58 3.2.1 Academic Risk Factors 59 3.3 Resilience and Coping Among Individuals and Families Living with SCD 60 3.3.1 Family Coping with SCD 60 3.3.2 Coping in Children 63 3.3.3 Caregiver Coping 67 3.3.4 Coping in Adults with SCD 69 3.4 Summary and Conclusions 71 3.5 Implications for Understanding Family Resilience 72 3.5.1 Implications for Practice and/or Policy 72 3.6 Future Directions 73 Discussion Questions 74 References 74 Chapter 4: Translational Research and Clinical Applications in the Management of Cystic Fibrosis 79 4.1 Literature Review and Implications 81 4.1.1 Adherence 81 4.1.1.1 Adherence to CF Treatments 81 4.1.1.2 Impact of Adherence on Family Functioning 82 4.1.1.3 Family Interventions to Improve Adherence 84 4.1.2 Translations and Applications 84 4.2 Family Functioning and Psychological Distress 85 4.2.1 Impact of Family Functioning on the Child 85 4.2.2 Depression and Anxiety in Families with CF 86 4.2.3 Impact of CF on Siblings 89 4.2.4 Protective Factors in Children with CF 89 4.3 Interventions to Improve CF Family Functioning 91 4.3.1 Translations and Applications 91 4.4 Impact of Infection Control Guidelines on Social Support 92 4.4.1 Clinical Implications and Interventions 92 4.4.2 Translations and Applications 94 4.5 Transition from Pediatric to Adult Care 94 4.5.1 Transition of Responsibility 94 4.5.2 Interventions to Facilitate Transition to Adult Care 96 4.5.2.1 Fertility and Sexual Health 98 4.5.3 Translations and Applications (See also Table 4.1) 100 4.6 Conclusion and Future Directions 100 Discussion Questions 100 References 101 Chapter 5: Improving Physician Self-Efficacy and Reducing Provider Bias: A Family Science Approach to Pediatric Obesity Treatment 107 5.1 Family Context of Childhood Obesity 111 5.2 Current Clinical Practice Guidelines for Childhood Obesity Treatment 113 5.2.1 Barriers to Guideline Implementation 114 5.2.2 Low Physician Self-Efficacy 115 5.2.3 Lack of Training in Behavioral Counseling and Family Dynamics 116 5.2.4 Weight Bias, Stigma, and Lack of Awareness of the Complex Causes of Obesity 117 5.3 Implications 119 5.3.1 Implications for Practice and Policy 120 5.3.2 Implications for Understanding Family Resilience 122 5.4 Conclusion and Future Directions 123 Discussion Questions 125 References 125 Chapter 6: Facing Changes Together: Teamwork and Family Resilience During Transition of Pediatric Solid Organ Transplant Patients to Adult Care 130 6.1 Introduction 130 6.2 Background 131 6.3 Elements of Transition 134 6.3.1 Knowledge and Empowerment 135 6.3.2 Increasing Comanagement and Shift in Responsibility 136 6.3.3 Maintaining Medical Access and Care Coordination Through Transition and Transfer 137 6.3.4 Supporting the Patient’s Psychosocial Needs During Transition 138 6.3.5 Insights from Promising Transition Programs 139 6.4 Implications for Understanding Family Resilience and Future Policy and Practice 141 6.5 A Final Word 142 Discussion Questions 142 References 143 Chapter 7: Fighting for the Forgotten: Risk and Resilience of Children and Families Involved with the Foster Care System 147 7.1 Child Protection in the United States 148 7.2 Health Needs of Children in Foster Care 150 7.2.1 Genetics and Epigenetics 150 7.2.2 Prenatal and Birth Conditions 150 7.2.3 Environmental Conditions 151 7.2.4 Routine Childhood Disease 152 7.2.5 Behavioral Problems and High-Risk Behaviors 152 7.2.6 Stressed Out 153 7.3 Adult Health Outcomes 154 7.4 Social Outcomes of Children in Foster Care 155 7.5 Barriers to Health Care Access and Delivery 157 7.6 Delivering Health Care to Children in Foster Care 158 7.7 Mental Health and Psychotropic Medication Use 160 7.8 Conclusion 162 Discussion Questions 162 References 163 Chapter 8: Strengthening Families Facing Breast Cancer: Emerging Trends and Clinical Recommendations 166 8.1 Literature Review 168 8.1.1 Cancer Caregiving: Burdens and Benefits 168 8.1.2 Phases of the Breast Cancer Experience 170 8.1.3 Diagnosis 171 8.1.4 Treatment 172 8.1.5 Mastectomy 172 8.1.6 Chemotherapy and Radiation 175 8.1.7 Post-treatment and Recurrence 176 8.1.8 Advanced Disease 176 8.2 Emerging Trends: Under-Researched Populations 177 8.2.1 Racial-Ethnic Minority Populations and Cultural Beliefs 177 8.2.2 Male Breast Cancer Patients and Their Families 178 8.2.3 Sexual Orientation and Breast Cancer 178 8.3 Implications 179 8.3.1 Implications for Family Resilience 179 8.3.2 Implications for Practice 180 8.3.3 Couples Interventions 180 8.3.4 General Treatment Recommendations 181 8.3.5 Case Vignette 183 8.4 Conclusions 184 Discussion Questions 185 References 185 Chapter 9: Fostering Resilience Among Older Adults Living with Osteoporosis and Osteoarthritis 191 9.1 Review of Literature 193 9.1.1 Understanding the Pathology of Osteoporosis and Osteoarthritis 193 9.1.2 Treatment Options for Osteoporosis and Osteoarthritis 195 9.2 Implications of Osteoporosis and Osteoarthritis on Individuals and Families 198 9.3 Resilience 201 9.3.1 Family Resilience 201 9.4 Strategies for Fostering Resilience Among Individuals and Families Facing Osteoarthritis and Osteoporosis 203 Discussion Questions 204 References 204 Chapter 10: The Unfolding of Unique Problems in Later Life Families 208 10.1 Literature Review 209 10.1.1 Later Life Problems 209 10.1.2 Family in Late Life 212 10.1.3 Chronic Illness in Families 214 10.1.4 Psychotherapy at Late Life 215 10.2 Implications 216 10.2.1 Implications for Practice 216 10.2.1.1 Watch and Wait Model 216 10.2.1.2 IPT as Model for Family Treatment 218 10.3 Implications for Understanding Family Resilience 220 10.3.1 Caregiving and Dementia as Model for Later Life Family Issues 220 10.3.2 Caregiver Family Treatment Overview 220 10.3.3 Resilience 221 10.4 Important Variables 225 10.4.1 Cultural Issues 225 10.4.2 End of Life 226 10.4.3 Elder Abuse 227 10.5 Conclusion and Future Directions 229 Discussion Questions 230 References 231 Index 236 This interdisciplinary volume offers theoretical, empirical, and practical insights into the strengths of families beset by chronic health issues. Featuring topics that run the lifespan from infancy to late adulthood, its coverage reflects both the diversity of family challenges in long-term illness and the wealth of effective approaches to intervention. The component skills of resilience in life-changing circumstances, from coping and meaning making to balancing care and self-care, are on rich display in a framework for their enhancement in therapy. The book's expert contributors include tools to aid readers in the learning and teaching of concepts as they model respectful, meaningful research methods and ethical, non-judgmental practice. Among the topics covered: Helping families survive and thrive through the premature birth of an infant. Enhancing coping and resiliency among families of individuals with sickle cell disease. A family science approach to pediatric obesity treatment. Risk and resilience of children and families involved with the foster care system. Strengthening families facing breast cancer: emerging trends and clinical recommendations. The unfolding of unique problems in later life families. With its mix of practical and empirical expertise, Family Resilience and Chronic Illness: Interdisciplinary and Translational Perspectives has much to offer both researchers in the family resilience field and mental health practitioners working with clients with chronic illness.-- Provided by publisher Front Matter....Pages i-xvi Using a Life-World Approach to Understand Family Resilience....Pages 1-17 The Experience of Preterm Birth: Helping Families Survive and Thrive....Pages 19-38 Enhancing Coping and Resilience Among Families of Individuals with Sickle Cell Disease....Pages 39-62 Translational Research and Clinical Applications in the Management of Cystic Fibrosis....Pages 63-90 Improving Physician Self-Efficacy and Reducing Provider Bias: A Family Science Approach to Pediatric Obesity Treatment....Pages 91-113 Facing Changes Together: Teamwork and Family Resilience During Transition of Pediatric Solid Organ Transplant Patients to Adult Care....Pages 115-131 Fighting for the Forgotten: Risk and Resilience of Children and Families Involved with the Foster Care System....Pages 133-151 Strengthening Families Facing Breast Cancer: Emerging Trends and Clinical Recommendations....Pages 153-177 Fostering Resilience Among Older Adults Living with Osteoporosis and Osteoarthritis....Pages 179-195 The Unfolding of Unique Problems in Later Life Families....Pages 197-224 Back Matter....Pages 225-227