'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
| Title: | '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 |
|---|---|
| Language: | English |
| Authors: | Megan Stock (ORCID |
| Source: | British Journal of Learning Disabilities. 2024 52(4):633-643. |
| Availability: | Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us |
| Peer Reviewed: | Y |
| Page Count: | 11 |
| Publication Date: | 2024 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Severe Disabilities, Learning Disabilities, Patients, Hospitals, Experience, Trauma, Family Attitudes, Access to Health Care, Mental Health |
| DOI: | 10.1111/bld.12595 |
| ISSN: | 1354-4187 1468-3156 |
| 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. |
| Abstractor: | As Provided |
| Entry Date: | 2024 |
| Accession Number: | EJ1446931 |
| Database: | ERIC |
| ISSN: | 1354-4187 1468-3156 |
|---|---|
| DOI: | 10.1111/bld.12595 |
| Published in: | British Journal of Learning Disabilities |
| Language: | English |