Managing the move from assisted to independent living: an inclusive qualitative study among adults with cerebral palsy

Abstract

Purpose: To understand aspects important to adults with severe cerebral palsy (CP) as they prepare to move from assisted to independent living and to create an appropriate intervention. Materials and methods: An inclusive qualitative study was conducted together with adults with severe CP (Gross Motor Function Classification Scale 4-5) preparing to move to independent living. It included semi-structured interviews which were recorded, transcribed, and analyzed by two occupational therapists to create themes. The themes were reviewed and adjusted by the partners in a group context. Results: Seven partners aged 23-47 years (median= 35 years, standard deviation = 10; 4 female) participated. Four themes arose with sub-themes: (1) house management (finances, meals, maintenance, and housework), (2) interactions and boundaries (with a caregiver, family, friends, and romantic partners), (3) schedules (work, leisure, volunteering, education, and health management), and (4) “my way” (autonomy, independence, and self-advocacy; emotions and group power). These themes expressed the concerns of the partners and formed the basis of a group intervention before their move from assisted to independent living. Conclusions: The inclusive research revealed themes the partners raised that expressed their concerns; these became the basis for a group intervention to prepare for their move from assisted to independent living.