Mijn lichaam en ik: Een integratief perspectief op identiteit en lichamelijke ervaringen bij jonge mensen met een ernstige ziekte

Advances in screening and treatment have resulted in an increasing number of young individuals growing up with a severe health condition (Van der Lee et al., 2007). Integrating the illness and its demands into their daily lives may challenge the normative developmental tasks they face. Developing a stable sense of identity and a healthy relationship with their body are important tasks in this regard. Youth with a severe health condition may feel limited in possible identity options compared to their healthy peers and obligated to change future goals (Schwartz & Parisi, 2013). In addition, these youth must integrate their condition into their developing identity, which is referred to as illness identity (Charmaz, 1995; Oris et al., 2016). Meanwhile, the importance of the body greatly increases in adolescence and emerging adulthood, and body image and the more holistic construct of embodiment (i.e., how individuals "inhabit" or feel at home in their bodies; Piran, 2016) can be challenged by treatment regimens and altered appearance and bodily functions (Pinquart, 2013; Trachtenberg & Piran, 2019). Furthermore, the intricate link between identity and the body may be particularly relevant for these youth. For instance, how the body shapes one's identity often goes unnoticed, but for those whose bodies are challenged by illness, this becomes prominent (Charmaz, 1995). However, much remains unknown about how identity and bodily experiences relate to general and illness-specific well-being, and integrative research on identity and the body remains limited to date. Further, a comprehensive perspective on embodiment is lacking. To improve current knowledge, this dissertation focuses on identity and bodily experiences in youth with type 1 diabetes and youth who survived childhood cancer. Both health conditions may destabilize identity roles, future perspectives, and one's experience of embodiment. Three research objectives were forwarded: (1) The first objective comprises linking personal identity to illness identity and general and illness-specific well-being from a longitudinal perspective. (2) The second objective focuses on how youth with a severe health condition experience their bodies, and how this relates to general and illness-specific well-being. The impact of illness on body satisfaction is investigated, and the holistic approach of the experience of embodiment is introduced. (3) Finally, the third objective aims to integrate both research fields by examining how identity and the body are intertwined. To investigate these research objectives, an integrative and longitudinal perspective is adopted using quantitative and qualitative methods. Collectively, this dissertation enhanced our understanding of identity and bodily experiences in youth confronted with a severe health condition, paying close attention to how they are interwoven. Our findings may have important implications for clinical practice and future research.