Self-Management of Young People with Chronic Conditions : A Strength-Based Approach for Empowerment and Support

This book focuses on young people (12-25 years old) growing up with a chronic somatic condition and/or physical disability, facing different challenges during their transition to adulthood and to adult healthcare services. Becoming an adult often proves extra challenging for them, because the adaptive tasks related to living with a chronic condition can clash with developmental milestones. Finding a good balance and integrating these tasks in daily life is also referred to as self-management. This book addresses self-management and empowerment of young people with chronic conditions as well as the Positive Youth Development concept. It elaborates on theories and approaches and offers a complete overview of self-management interventions for young people with chronic conditions, emphasizing on the tasks of medical, emotion and role management. It also elaborates on the roles and tasks of professionals, as well as the patient-provider relationship; the shifting roles between young people and their parents and the role of peer support. This book is unique in its broad view on self-management, i.e. it goes beyond medical management and focuses on young people achieving their maximum potential and a good quality of life. Furthermore, the book employs a positive youth development approach, focusing on empowerment and growth rather than problems or issues. It offers an overview of the state-of-the-art and evidence concerning self-management support for young people with various chronic conditions. As such it is of benefit for all healthcare professionals working in care for young people, but also for researchers interested in this topic. Contents Contributors 1: Self-Management of Young People with Chronic Conditions: An Overview and Introduction 1.1 Introduction: Chronic Health Conditions and Young People 1.2 Healthcare Transition 1.3 Self-Management 1.4 Supporting Self-Management 1.5 Empowerment, Autonomy, and Agency 1.6 The Contents of This Book References 2: Positive Youth Development Approach to Support Life Skills of Young People with Chronic Conditions 2.1 Introduction 2.2 The History and Evolution of Positive Youth Development 2.3 Applied Positive Youth Development and Outcomes 2.4 Positive Youth Development and Chronic Conditions 2.4.1 Mentorship 2.4.2 Leadership 2.5 Key Recommendations for Practice 2.6 Conclusion References 3: The Development of Self-Management in Young People with Chronic Conditions: A Transitional Process 3.1 Introduction 3.2 Growing Up with a Childhood-Onset Chronic Condition 3.3 Frameworks for Self-Management and Self-Management Support of Young People 3.4 Theories and Theoretical Constructs Underlying Self-Management 3.5 Self-Management Tasks of Young People and Required Skills 3.6 Factors That Influence Self-Management of Young People 3.7 Self-Management Interventions 3.8 Evaluation and Outcomes of Self-Management Interventions 3.9 Key Recommendations 3.10 Conclusion References 4: Exploring Components and Effects of Self-Management Interventions for Young People with Chronic Conditions 4.1 Introduction 4.2 Systematic Literature Review 4.2.1 Searching for SMI 4.2.2 Exploring Content and Components of SMI 4.2.3 Exploring Effectiveness and Effective Components 4.3 Findings 4.3.1 SMI Components 4.3.1.1 Domains and Theories of Self-Management 4.3.1.2 Other Components 4.3.2 Outcomes of Self-Management Interventions 4.3.3 General Effects of Self-Management Interventions 4.3.4 Promising Intervention Components 4.3.4.1 Outcomes of Self-Management Domains as Intervention Components 4.3.4.2 Professionals Involved as Intervention Components 4.3.4.3 Formats as Intervention Components 4.3.4.4 Settings as Intervention Component 4.4 Key Recommendations for Practice 4.5 Conclusion 4.6 Appendix: Evidence Profile References 5: Self-Management Support for Young People with Chronic Conditions: Roles and Views of Professionals 5.1 Introduction 5.2 Perspectives for the Health Professionals 5.2.1 Healthcare Professionals: The Individual 5.2.2 Comparison of Health Priorities Between Professionals and Young People 5.2.3 Adjustment of Care as Young Person Grows Up 5.2.4 Relationships Between Professional and Young Person and/or Caregivers 5.2.5 Navigating Triadic Consultations 5.2.6 Differences Between Perceived and Actual Self-Management Skills 5.2.7 Barriers and Facilitators to Self-Management 5.2.8 Healthcare Professionals: The Team 5.2.9 Healthcare Professionals in the Adult Care Setting 5.3 Perspectives for the Organisation 5.3.1 Developmentally Appropriate Healthcare 5.3.2 Young Person Accessible and Responsive Services 5.3.3 Adequate Time 5.3.4 Learning to Navigate the Health System 5.3.5 Workforce Competency 5.4 Perspectives for the Wider Community 5.5 Key Recommendations for Practice 5.6 Conclusion References 6: Transition to Adulthood: Shifting Roles Between Young People with Chronic Conditions and Their Parents 6.1 Introduction 6.2 Parenting in Transition 6.2.1 Experiences and Impact of Parenting in Transition 6.2.2 Parenting Capabilities in Transition 6.3 Parenting and Transitional Care 6.3.1 Changing Conceptualisations of Parenting in Transitional Care 6.3.2 Parents Experiences of Transitional Care 6.3.3 Parent-Friendly Transitional Care 6.4 Key Recommendations for Practice 6.5 Conclusion References 7: Peer Support for Young People with Chronic Conditions 7.1 Introduction 7.2 Background 7.3 Peer Relationships and Young People with Chronic Conditions 7.4 What Is Peer Support? 7.4.1 Peer Support: Components and Categories 7.5 Theoretical Underpinnings of Peer Support 7.6 Peer Support Models and Programmes 7.6.1 Therapeutic Camps 7.6.2 Face-to-Face Programmes 7.6.3 Online Peer Support 7.7 Does Peer Support Improve Health and Wellbeing? 7.7.1 Condition-Related Knowledge 7.7.2 Psychosocial Wellbeing 7.7.3 Managing Treatment Regimens 7.7.4 Quality of Life 7.7.5 Health Status 7.7.6 Health Service Use 7.8 Acceptability: Young Peoples’ Views of Peer Support 7.8.1 Peer Support Exchanges 7.8.2 Feeling Socially Connected and ‘Normal’ 7.8.3 Developing Knowledge and Skills 7.8.4 Experiences of Being a Peer Leader/Mentor 7.9 The Risks and Challenges of Peer Support 7.10 Implications and Key Recommendations for Practice and Research 7.10.1 Implications for Practice 7.10.2 Implications for Research 7.11 Conclusions References 8: Skills for Growing Up and Ready Steady Go: Practical Tools to Promote Life Skills in Youth with Chronic Conditions 8.1 Introduction 8.2 Theoretical Framework 8.3 Skills for Growing Up 8.4 Ready Steady Go 8.5 Experiences of Youth and Their Parents 8.6 Experiences of Healthcare Professionals 8.7 Implementation Issues 8.8 Perceived Effectiveness 8.8.1 Recommendations 8.9 Conclusion References