'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.
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 pe...
| Publicado en: | British Journal of Learning Disabilities Vol. 52; no. 4; pp. 633 - 644 |
|---|---|
| Autores principales: | , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Dec2024
|
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=180656356&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 180656356 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13544187 F04 jtl: British Journal of Learning Disabilities issn: 13544187 maglogo: Y pubinfo: dt: Dec2024 vid: 52 iid: 4 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 180656356 180656356 180656356 10.1111/bld.12595 180656356 ppf: 633 ppct: 11 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: '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. aug: au: Stock, Megan Mulholland, Mark Cooper, Vivien Head, Annabel Prowse, Sam Wellsted, David Mengoni, Silvana E. Rhodes, Louisa Ellis‐Caird, Helen affil: Lewisham Mental Health Learning Disabilities Team, South London and Maudsley NHS Foundation Trust, London, UK sug: subj: Intellectual Disability Therapy Persons with Intellectual Disabilities Psychosocial Factors Hospitalization Psychosocial Factors Patient Discharge Psychosocial Factors Hospital to Home Transition Transitional Care Family Psychosocial Factors Family Attitudes Human Male Female Adult Qualitative Studies Focus Groups Purposive Sample Thematic Analysis Storytelling Institutionalization Patient Abuse Trauma Community Living Family Support Respect Professional-Family Relations Support, Psychosocial Funding Source Adult: 19-44 years Male Female ab: 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. Accessible Summaries: We wanted to understand the experiences of families of people with complex needs living in a mental health hospital and moving out of hospital.Family members talked about how difficult the experience of being in hospital had been for their relative and for themselves.Family members felt very unsupported and let down by professionals.Family members talked about feeling relieved that their relative had moved out of hospital.There had been lots of on‐going problems accessing the right support for their relative.Family members and their relatives need specialist support to help the person with complex needs to live in the community and out of hospital. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
|---|