Family involvement in decision making for people with dementia in residential aged care: A systematic review of quantitative and qualitative evidence

Background The involvement of people in decisions about their care is recognized as both good practice and important in ensuring optimal outcomes. However, despite a considerable history of research attention to aspects of this issue, in practice family involvement in decision making can be challenging for care staff and families alike. Objectives The qualitative and quantitative objective of this review was to scope the extant knowledge about family involvement in decision making for people with dementia living in residential aged care. Inclusion criteria Types of participants This review considered studies that included people with dementia who were living in residential aged care, their families and care staff. Types of intervention(s)/phenomena of interest This review considered studies that investigated involvement of family members in decision making for people with dementia in a residential aged care setting. Types of studies The quantitative component of the review considered both experimental and descriptive study designs. The qualitative component considered studies that focused on qualitative data including designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Types of outcomes This review considered studies that investigated or discussed who the decision makers were in care for people with dementia and how decisions were made, what processes assisted families in decision making and what were the barriers or facilitators to collaborative decision making by families, as well as the impact of decision making processes on family members and the impact of collaborative decision making with family members on the person with dementia. Search strategy A comprehensive search of research studies that were published in English was conducted in 15 electronic databases. The search strategy was limited to papers published in or after 1990. Methodological quality Quantitative and qualitative studies selected for retrieval were assessed by two independent reviewers for methodological validity using standardized critical appraisal instruments from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) and Qualitative Assessment and Review Instrument (JBI-QARI). Data collection Quantitative and qualitative data was extracted from papers included in the review using the standardised data extraction tools from JBI-MAStARI and JBI-QARI. Data synthesis It was not possible to pool quantitative papers in statistical meta-analysis using JBI-MAStARI. The findings are presented in narrative form. Qualitative research findings were pooled using JBI-QARI. Results The review included 26 papers reporting on 24 studies. Analyses resulted in identification of key findin gs relating to decisions encountered and made by family surrogates, family perceptions of and preferences for their role/s, variables and factors associated with treatment decisions and the collaborative decision making process, as well as outcomes for both people with dementia and their families. Conclusions The results of the review indicate varied experiences of decision making, varied preferences for decision making, and a range of factors that influence decision making. Family involvement in decision making for people with dementia in residential care is an area of care that requires additional attention in both research and practice. In particular, the interface with staff and the support available for families should be addressed, as well as the role of different stakeholders in the decision. © The authors 2013