“The whole thing is beyond stress”: Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs

Abstract

Background People with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme. Methods Six family members of people with complex needs who had moved out of hospital took part in four focus groups co-facilitated with an expert-by-experience consultant. Participants' relatives had hospital admissions that ranged from 6 weeks to 11 years. Transcripts were analysed using reflexive thematic analysis. Additional reflections are included from an expert-by-experience consultant to capture their unique perspective. Results Family members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long-lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on-going difficulties accessing the right support in the community and so stability felt fragile. Conclusions Key recommendations to support community living include respecting family members' expertise, improving partnership working and offering psychological support for family members and people with complex needs post-discharge.