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'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

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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
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  Data: '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
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  Data: <searchLink fieldCode="AR" term="%22Megan+Stock%22">Megan Stock</searchLink> (ORCID <externalLink term="http://orcid.org/0009-0003-5107-3576">0009-0003-5107-3576</externalLink>)<br /><searchLink fieldCode="AR" term="%22Mark+Mulholland%22">Mark Mulholland</searchLink><br /><searchLink fieldCode="AR" term="%22Vivien+Cooper%22">Vivien Cooper</searchLink><br /><searchLink fieldCode="AR" term="%22Annabel+Head%22">Annabel Head</searchLink><br /><searchLink fieldCode="AR" term="%22Sam+Prowse%22">Sam Prowse</searchLink><br /><searchLink fieldCode="AR" term="%22David+Wellst%22">David Wellst</searchLink><br /><searchLink fieldCode="AR" term="%22Silvana+E%2E+Mengoni%22">Silvana E. Mengoni</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-9431-9762">0000-0002-9431-9762</externalLink>)<br /><searchLink fieldCode="AR" term="%22Louisa+Rhodes%22">Louisa Rhodes</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-8137-9734">0000-0001-8137-9734</externalLink>)<br /><searchLink fieldCode="AR" term="%22Helen+Ellis-Caird%22">Helen Ellis-Caird</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. 2024 52(4):633-643.
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  Data: 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
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  Data: Y
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  Data: 11
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  Data: 2024
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Severe+Disabilities%22">Severe Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Learning+Disabilities%22">Learning Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Patients%22">Patients</searchLink><br /><searchLink fieldCode="DE" term="%22Hospitals%22">Hospitals</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Trauma%22">Trauma</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Attitudes%22">Family Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink>
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  Data: 10.1111/bld.12595
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  Data: 1354-4187<br />1468-3156
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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.
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