The Everyday Lives of Adults with Learning Disabilities who have Moved Out of Hospital through Transforming Care

Abstract

The UK’s Transforming Care programme has aimed to reduce the number of people with intellectual disabilities being placed in mental health hospitals. However, a lack of good quality community provision has been linked to delays the discharge, as well as community placement breakdown and hospital readmission. Recent UK government plans recognise the importance of the perspectives of people with intellectual disabilities in developing better community support. However, the voices of people who have moved through Transforming Care are largely absent from the research being built around its long-term impacts. There is therefore limited in understanding on the factors that support this group of people to have a good quality of life in the community. The current study used a qualitative design to explore the everyday experiences of people with ID who have moved out of hospital through Transforming Care from their own perspective, in order to deepen the understanding of what enhances/undermines their QoL in the community. It had a secondary aim to understand the impact of the Coronavirus pandemic on this group of people’s everyday lives. Data was used from the existing Making Positive Moves research programme (The University of Hertfordshire), including 19 semi-structured interviews from 10 people. Key Support People, who knew the person well, supported people in some of the interviews (n=7). Using thematic analysis, four main themes were developed in relation to how participants spent their everyday lives, including ‘Leisure’, ‘Work’, ‘Personal Development’, and ‘Connecting with Others’. In addition, six main themes were developed in relation to the more in-depth meaning given to everyday experiences: ‘The Value of Autonomy’, ‘The Continued Impact of Hospital’, ‘The Value of Supportive Relationships’, ‘Safety through Support’, ‘Being Included’, and ‘The Importance of Giving to Others’. A novel finding was that support (most notably from staff working with the individuals) was key in supporting people to be autonomous following a move from hospital. The Coronavirus pandemic was found to have a range of impacts of people’s activities and wellbeing and seemed to have a more neutral/less significant impact for some. A number of clinical implications are discussed, relevant for staff working with adults who have moved out of hospital through Transforming Care.