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ERIC Number: EJ1446931
Record Type: Journal
Publication Date: 2024-Dec
Pages: 11
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1354-4187
EISSN: EISSN-1468-3156
Available Date: N/A
'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
Megan Stock; Mark Mulholland; Vivien Cooper; Annabel Head; Sam Prowse; David Wellsted; Silvana E. Mengoni; Louisa Rhodes; Helen Ellis-Caird
British Journal of Learning Disabilities, v52 n4 p633-643 2024
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.
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
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A
Author Affiliations: N/A