ENGLISH SUMMERY

Living with cerebral palsy (CP) can affect many parts of one's life from early childhood to late adulthood. Thus, having CP also means becoming affiliated with the health system and thereby offering a range of treatment and rehabilitation programs. However, in Denmark and many other wealthy countries, only systematic and coordinated programs are offered until the day the young person with CP turns 18. The majority of these programs specifically focus on how to best support and improve the individual’s physical functioning, which means that these important types of programs are well established and have a strong knowledge base. However, less attention has been given to interventions aimed at dealing with the psychosocial challenges of living with CP. Hence, this thesis aims to elucidate the impact of integrating physical and psychosocial aspects in the design and primary objective of an intervention for young people and adults with CP. This is done by using a phenomenological inspired approach to examine the experiences of young people and adults with CP who participated in a holistic resilience-based sports camp intervention designed by the Elsass Foundation. This thesis elucidates which aspects of the participants’ experience are meaningful for the participants’ physical and psychosocial development.

Study 1 focusses on how the participants experience being part of a group of similarly disposed individuals. The participants described feeling that they belonged to the group and that they were safe in the group. They described feeling a sense of positive group synergy in which there was symmetry between the abilities of the individual group members and a shared understanding of what living with CP means. Together, these dimensions resulted in the participants believing more in themselves and in daring to be more vulnerable and to participate actively in the challenges they were given.

Study 2 deals with how the participants experience participating in the challenging adapted physical activities of the sports camp. The participants found the activities to be very different and challenging when compared to their everyday activities and traditional rehabilitation interventions. By participating in the activities, the participants learned to see themselves, their disability and their abilities in a new light.

Study 3 examines how participating in a sports camp affects the lives of participants after the camp. The participants described how the camp had positively changed their everyday lives in two ways. First, they were able to implement some of the elements from the camp when

they returned to their everyday lives, and second, they found that some of the elements from the camp were present in their lives in new and transformed ways. In describing these positive changes, the participants focussed on the following areas: 1) forging social relationships, 2) using strategies for dealing with challenges, 3) creating a new self-image and self-narrative, and 4) participating in activities. Furthermore, the study’s findings indicate that some of the participants find the time after camp very lonely, which may hinder participants from gaining as much as they could from the sports camp. Thus, the recommendation is to focus more on integrating the camp in the participants’ everyday lives and to include their local social environment.

Study 4 aims to elucidate, elaborate and concretise a new experience phenomenon referred to as a ’red zone experience’ based on a grounded theory analysis. The core category that captures this phenomenon is defined as a an inconsistency between the participant’s preconceived negative expectation of not being able to perform an activity and the subsequent positive experience of succeeding at the activity. Three additional core elements form the concept: 1) a meta-motivation that is present as a deep-felt wish to engage despite an instinctive resistance; 2) the presence of significant others; and 3) a transformative self-narrative that changes the way in which the individual sees themselves and what the world has to offer. The findings show how great challenges can transform and strengthen an individual’s self-image, if the professionals are able to support in a resolute but cautious way.