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Relatives' experiences of quality of healthcare services for adults with profound intellectual and multiple disabilities in Sweden
Örebro University, School of Behavioural, Social and Legal Sciences. University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.ORCID iD: 0000-0002-7048-1925
Örebro University, School of Health Sciences.ORCID iD: 0000-0001-5418-3154
2024 (English)In: Journal of Intellectual & Developmental Disability, ISSN 1366-8250, E-ISSN 1469-9532, Vol. 49, no 4, p. 452-461Article in journal (Refereed) Published
Abstract [en]

Introduction: There is little research regarding quality of health care for people with profound intellectual and multiple disabilities (PIMD), who often are represented by their relatives, because of their limited communication. The aim of this study was to explore experiences and perspectives of relatives regarding healthcare services for adults with PIMD.

Method: Twelve semi-structured telephone interviews were conducted involving close relatives of people with PIMD: mothers (n = 7), fathers (n = 2), brothers (n = 2) and a sister (n = 1). Qualitative content analysis was used.

Results: Three themes emerged from the material: (1) Holistic view and responsibility, (2) Complexity and specialisation require coordination, and (3) Specific knowledge about the individual with PIMD.

Conclusions: The relatives experienced that quality of health care should be based on a holistic view incorporating special competence and coordination. They emphasised the importance of an alliance, leveraging the relatives' person-specific knowledge alongside healthcare professionals' specialist competence.

Place, publisher, year, edition, pages
Taylor & Francis, 2024. Vol. 49, no 4, p. 452-461
Keywords [en]
Autonomy, Content analysis, Profound intellectual and multiple disabilities (PIMD), Relatives, Social care
National Category
Nursing
Identifiers
URN: urn:nbn:se:oru:diva-115176DOI: 10.3109/13668250.2024.2377270ISI: 001271359300001PubMedID: 39815945Scopus ID: 2-s2.0-85198840442OAI: oai:DiVA.org:oru-115176DiVA, id: diva2:1886584
Funder
Region Örebro CountyÖrebro University
Note

This work was supported by the University Health Care Research Center, Region Örebro County, Örebro University, and the Sävstaholm Foundation.

Available from: 2024-08-02 Created: 2024-08-02 Last updated: 2025-01-21Bibliographically approved

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Matérne, MarieHolmefur, Marie

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