Being a pioneer: a qualitative study of moving into individualised housing from the perspective of adults with neurological disability

Abstract

Background. Despite a move towards individualised models of housing and support for people with disability, there is limited research to inform best practice with people with neurological disability. This study was undertaken to better understand the experience of moving into individualised housing from the perspective of people living with neurological disability. Methods. Ten adults with neurological disability (acquired brain injury = 3; cerebral palsy = 4; muscular atrophy = 1; muscular dystrophy = 1; multiple sclerosis = 1) undertook semi-structured interviews at two time points (pre-move and 6-24 months post-move). Interviews explored participants' quality of life, community participation, social connection and support use. Transcripts from 20 interviews were analysed using constructivist grounded theory methods. Analysis moved through a process of datadriven, open and focused coding; identification of emergent themes; and relations between them using the method of constant comparison. Results. Two key themes emerged. Participants' lives pre-move were described as 'not a good fit' with experiences of social isolation, lack of autonomy and limited housing choices. In contrast, life post-move was characterised as 'moving in the right direction' with experiences of new responsibilities, building a support team and making a home. Transition between the two environments was a challenging period of adjustment in which participants felt like a pioneer navigating new opportunities and responsibilities. Conclusion. The findings highlight the value of moving into and living in individualised housing, contributing much needed research evidence from the perspective of people with disability. The move into individualised housing was identified as a transition experience that necessitates the development of transition-specific policy and support models to better prepare and support people during this transition.