| 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 0009-0003-5107-3576); Mark Mulholland; Vivien Cooper; Annabel Head; Sam Prowse; David Wellst; Silvana E. Mengoni (ORCID 0000-0002-9431-9762); Louisa Rhodes (ORCID 0000-0001-8137-9734); Helen Ellis-Caird |
| 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 |