Chapter 1. Introduction Introduction to the book, definitions AnneLoes van Staa, Sander Hilberink, Jane Sattoe Rotterdam University of Applied Sciences
Chapter 2. Theories of self-management of young people with chronic condition Transitions of young people with chronic conditions: self-management; generic approach, broad view, role of others Jane Sattoe, AnneLoes van Staa Rotterdam University of Applied Sciences,
Chapter 3. Positive Youth Development approach to support life skills of young people with chronic conditions Positive Youth Development approach, empowerment, experiences, outcomes Gary Maslow Duke University School of Medicine, USA
Chapter 4. Exploring effectiveness and effective components of self-management interventions for young people with chronic physical conditions: A systematic review
Roles, tasks and views of healthcare professionals Jane Sattoe, Marjolijn Bal, Pepijn Roelofs, Roland Bal, Harald Miedema, AnneLoes van Staa Rotterdam University of Applied Sciences, and Amsterdam University of Applied Sciences
Chapter 5. Self-management Support for young people with chronic conditions The roles and tasks of professionals (as well as the patient-provider relationship) Janet McDonagh Centre for MSK Research, University of Manchester, Manchester, UK
Chapter 6. Youth Participation: Incorporating the views of young people Ways of youth participation and the views of young people
Imelda Coyne, Children’s Nursing & Research, Trinity College Dublin, Ireland
Chapter 7. Transition to Adulthood: Shifting roles between young people with chronic conditions and their parents Shifting roles (between young people and their parents) Jan Willem Gorter McMaster University, Canada, CanChild Centre for Childhood Disability Research, Canada
Chapter 8. The role of peer support in self-management and empowerment of young people with chronic conditions The role of peer support Susan Kirk School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK
Chapter 9. The Skills for Growing Up and Ready Steady Go tools to promote life skills in youth with chronic conditions Experiences with and outcomes of the Skills for Growing Up and Ready Steady Go programs Sander Hilberink, Jane Sattoe, Marij Roebroeck, Arvind Nagra, AnneLoes van Staa Rotterdam University of Applied Sciences, and Amsterdam University of Applied Sciences
Chapter 10. Conclusions Concluding remarks Jane Sattoe, Sander Hilberink, AnneLoes van Staa Rotterdam University of Applied Sciences
Jane Sattoe, PhD, is a Senior Researcher and lecturer with a background in health sciences. In 2015, she defended her PhD thesis ‘Growing up with a Chronic Condition: Challenges for Self-management and Self-management Support’ about self-management of adolescents and young adults with chronic conditions. She is involved in research on transition to adulthood with a focus on self-management, social participation, mental wellbeing and transition to adult care. She also works on the development, implementation and evaluation of self-management interventions aiming to empower adolescents and young adults with chronic conditions.
AnneLoes van Staa, PhD MD RN, Applied Research Professor, trained as a general and pediatric nurse before graduating both in medicine and cultural anthropology. In 2003, she was appointed professor "Transitions in Care" in Rotterdam University of Applied Sciences. She defended her PhD thesis ‘On Your Own Feet’ in 2012 about preferences and competencies of adolescents with chronic conditions in their transition to adulthood and to adult care. She is involved in quality improvement programs aimed at improving adolescent healthcare services and at empowering adolescents in self-management and autonomy. She also leads research programs into nurse-led self-management support of people with chronic conditions.
Sander Hilberink, PhD, Applied Research Professor, trained as clinical psychologist. He is involved in research on transition to adulthood and lifespan care since 2006, with focus on empowerment, autonomy and long-term consequences of childhood-onset chronic conditions. He is involved in a variety of healthcare innovations, addressing not only a better transfer to adult healthcare, but also to improve citizenship while ageing with lifelong disabilities.
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.