How People With Intellectual Disabilities Experience Transitions Through the Transforming Care Programme: a Grounded Theory Study

Abstract

Following the exposure of abuse of people with Intellectual Disabilities (ID) at Winterbourne View, the Government launched the Transforming Care programme, to support people to transition out of hospital into their own home. A literature review revealed limited research into people with ID’s experiences of transitioning. The study aimed to explore how transitions through Transforming Care were experienced. Eleven people with ID were interviewed about their experiences, with ten nominating a Key Support Person to be interviewed alongside them on a second occasion. Interviews were analysed using a Social Constructionist Grounded Theory methodology. The model demonstrated that participants experienced transitioning as a highly complex process of managing change. In hospital, how participants were seen by significant others and how they saw themselves resulted in a ‘restricted story.’ In moving to the community, participants and those around them were able to shift ideas about who they were, allowing for a ‘widening out’ of their story. Participants discussed seeking a sense of safety in new relationships, managing loss, and going through uncertainty as part of the process of transitioning. The findings of this study demonstrate that transitioning is not a single event, but an ongoing process over time. Clinical implications include ensuring that people with ID feel prepared about their move and the importance of staff understanding peoples’ behaviours within a wider context.