Factors affecting user participation for elderly people with dementia living at home: a critical interpretive synthesis of the literature

ABSTRACT

Professional caregivers are expected to facilitate user participation for people with dementia. At the same time, an increasing number of elderly people with dementia are now being cared for at their homes. Research is scarce on user participation for people with dementia, especially for people with dementia who live at home. This article aims to systematically and critically review the factors affecting user participation for elderly people with dementia living at home from the viewpoint of the patients, family caregivers, professional caregivers and researchers. A systematic literature search and critical interpretive synthesis were conducted. The search yielded 1,957 articles. In total, 112 full-text articles were retrieved, of which 27 met the inclusion criteria. Five broad analytical themes were identified during the analysis: individual characteristics, professional caregiver characteristics, decision characteristics, relational characteristics and organisational characteristics. The results show that the value placed on user participation can differ between family caregivers and professional caregivers. People with dementia still experience stigmatisation, preventing user participation, and relations with both family and professional caregivers play a key role in enabling user participation for people with dementia.

ABSTRAKT

Brukermedvirkning eller medbestemmelse blir ofte nevnt i politiske dokumenter i demensomsorgen, og profesjonelle omsorgsgivere er forventet å tilrettelegge for brukermedvirkning for eldre personer med demens. Samtidig mottar et økende antall eldre med demens nå omsorgstjenester i eget hjem. Forskningen på brukermedvirkning for personer med demens er mangelfull, spesielt i forhold til personer med demens som bor i eget hjem. Denne artikkelen tar derfor sikte på en systematisk og kritisk gjennomgang av faktorer som påvirker brukermedvirkning for eldre med demens som bor hjemme, fra ståstedet til personer med demens, pårørende, profesjonelle omsorgspersoner og forskere. Et systematisk litteratursøk og en kritisk fortolkende syntese ble utført. Søket gav 1,957 treff. I alt ble 112 fulltekstartikler lest, hvorav 27 oppfylte inklusjonskriteriene. Fem store analytiske temaer ble identifisert under analysen: Individuelle egenskaper, egenskaper ved ansatte, beslutningsegenskaper, relasjonsegenskaper og organisatoriske egenskaper. Resultatene viser at vektleggingen av brukermedvirkning kan variere mellom pårørende og profesjonelle omsorgspersoner. Personer med demens opplever fortsatt stigmatisering, noe som kan forhindre brukermedvirkning, og relasjonen til både pårørende og profesjonelle omsorgspersoner ser ut til å spille en viktig rolle i å muliggjøre personer med demens sin medvirkning.

KEYWORDS:

• Dementia
• user participation
• decision-making
• home care

STIKKORD:

• Demens
• brukermedvirkning
• medbestemmelse
• hjemmesykepleie

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Ingebjørg Haugen is currently undertaking a doctoral research on user participation in dementia care with focus on home care. Her interests also include the subject of homesickness for people with dementia. She is a PhD-candidate at VID Specialized University, Center for Diakonia and Professional Practice. She has a master in Human Development from the Norwegian University of Science and Technology.

Tor Slettebø is working as a professor in Social Work at VID Specialized University, Oslo, where his teaching obligations are mainly on the master programme in Social work and a multi-professional Ph.D on professional practice. His main areas of research is within the field of user participation in welfare services, child welfare and practice research.

Siri Ytrehus is Professor at the Department of Health and Caring Sciences, Western Norway University of Applied Sciences. Ytrehus holds a PhD in sociology and is a registered nurse. She has specialised in research on welfare state issues and municipal health and care services. Recurring themes are elderly care, housing policy, housing and services for vulnerable groups, family care and dementia. She is currently involved in various research projects about home care: innovation, family caregiver network, dementia and elderly with advanced cancer. She leads the Unit for Interdisciplinary Master Programs at the Department of Health and Caring Sciences.

ORCID

Ingebjørg Haugen http://orcid.org/0000-0002-2278-8594

Additional information

Funding

This work was supported by Norwegian ExtraFoundation for Health and Rehabilitation; Norwegian Health Association.