Families' perspectives of transitioning young adults with cerebral palsy to independent living.

Abstract

Adolescents and Young Adults (AYAs) with cerebral palsy (CP) face health and social inequities when transitioning to independent living. This study aimed to 1) understand the meaning of the transition to independent living for family members, and 2) identify barriers and enablers within family, community and service systems that may impact on this transition. Exploratory research design. Family members of AYAs with CP were surveyed through two health services. Responses were analysed using reflexive thematic and inductive content analysis and descriptive statistics. Thirty-two family members of 31 AYAs with CP took part in the study. Four themes were identified in relation to the meaning of the transition to independent living: 1) the opportunity for AYAs to experience adult life, 2) freedom for all parties, 3) uncertainty and worry about safely transferring care, and 4) future planning for ageing family members. Six themes related to barriers and enablers were [1]: AYAs health and wellbeing [2]; proximity to the AYA [3]; navigating complex service systems [4] timely access to funding and equipment [5], finding suitable accommodation and [6] confidence in care quality. Findings provide insights for health and disability services supporting AYAs and families transitioning to independent living.