Navigating being a young adult with cerebral palsy: a qualitative study

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  • Gitte Normann, Department of Pediatrics and Adolescent Medicine, Center of Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Danmark
  • Kirsten Arntz Boisen, Department of Pediatrics and Adolescent Medicine, Center of Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Danmark
  • Peter Uldall, Department of Pediatrics and Adolescent Medicine, Neuropediatric Unit, Copenhagen University Hospital Rigshospitalet, Danmark
  • Anne Brødsgaard

Objectives Young adults with cerebral palsy (CP) face potential challenges. The transition to young adulthood is characterized by significant changes in roles and responsibilities. Furthermore, young adults with chronic conditions face a transfer from pediatric care to adult healthcare. This study explores how living with CP affects young adults in general, and specifically which psychosocial, medical and healthcare needs are particularly important during this phase of life. Methods A qualitative study with data from individual, semi-structured, in-depth interviews with six young adults with CP (ages 21-31 years) were transcribed verbatim and analyzed. The participants were selected to provide a maximum variation in age, gender, Gross Motor Function Classification System score and educational background. A descriptive thematic analysis was used to explore patterns and identify themes. Results Three themes were identified: "Being a Young Adult", "Development in Physical Disability and New Challenges in Adulthood" and "Navigating the Healthcare System". The three themes emerged from 15 sub-themes. Our findings emphasized that young adults with CP faced psychosocial challenges in social relationships, participation in education and work settings and striving towards independence. The transition to young adulthood led to a series of new challenges that the young adults were not prepared for. Medical challenges included managing CP-related physical and cognitive symptoms and navigating adult health care services, where new physicians with insufficient knowledge regarding CP were encountered. Conclusion The young adults with CP were not prepared for the challenges and changes they faced during their transition into adulthood. They felt that they had been abandoned by the healthcare system and lacked a medical home. Better transitional care is urgently needed to prepare them for the challenges in young adulthood.

OriginalsprogEngelsk
Artikelnummer20200039
TidsskriftInternational Journal of Adolescent Medicine and Health
Antal sider9
ISSN0334-0139
DOI
StatusE-pub ahead of print - 5 sep. 2020

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