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Int J Evid Based Healthc. 2014 Jun;12(2):87-104. doi: 10.1097/XEB.0000000000000002.

A qualitative metasynthesis: family involvement in decision making for people with dementia in residential aged care.

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1The University of Queensland, Australian Centre for Evidence Based Community Care and UQ/Blue Care Research and Practice Development Centre, Queensland, Australia 2Wicking Dementia Research and Education Centre, University of Tasmania, Tasmania, Australia.



Involving people in decisions about their care is good practice and ensures optimal outcomes. Despite considerable research, in practice family involvement in decision making can be challenging for both care staff and families. The aim of this review was to identify and appraise existing knowledge about family involvement in decision making for people with dementia living in residential aged care.


The present Joanna Briggs Institute meta-synthesis considered studies that investigate involvement of family members in decision making for people with dementia in residential aged care settings. While quantitative and qualitative studies were included in the review, this article presents the qualitative findings. A comprehensive search of studies was conducted in 15 electronic databases. The search was limited to papers published in English, from 1990 to 2013. Twenty-six studies were identified as relevant for this review; 16 were qualitative papers reporting on 15 studies. Two independent reviewers assessed the studies for methodological validity and extracted the data using the standardized Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). The findings were synthesized using JBI-QARI.


The findings related to the decisions encountered and made by family surrogates, family perceptions of, and preferences for, their role/s, factors regarding treatment decisions and the collaborative decision-making process, and outcomes for family decision makers.


Results indicate varied and complex experiences and multiple factors influencing decision making. Communication and contacts between staff and families and the support available for families should be addressed, as well as the role of different stakeholders in decisions.

[Indexed for MEDLINE]

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