Susan Banks

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

Aim: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. Methods: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. Results: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. Conclusion: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.

Family involvement in decision making for people with dementia in residential aged care: a systematic review of quantitative literature

Aim:Ensuring older adults’ involvement in their care is accepted as good practice and is vital, particularly for people with dementia, whose care and treatment needs change considerably over the course of the illness. However, involving family members in decision making on peoples behalf is still practically difficult for staff and family. The aim of this review was to identify and appraise the existing quantitative evidence about family involvement in decision making for people with dementia living in residential aged care. Methods:The present Joanna Briggs Institute (JBI) metasynthesis assessed studies that investigated 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 paper presents the quantitative findings. A comprehensive search of 15 electronic databases was performed. The search was limited to papers published in English, from 1990 to 2013. Twenty-six studies were identified as being relevant; 10 were quantitative, with 1 mixed method study. Two independent reviewers assessed the studies for methodological validity and extracted the data using the JBI Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). The findings were synthesized and presented in narrative form. Results:The findings related to decisions encountered and made by family surrogates, variables associated with decisions, surrogates’ perceptions of, and preferences for, their roles, as well as outcomes for people with dementia and their families. Conclusions:The results identified patterns within, and variables associated with, surrogate decision making, all of which highlight the complexity and variation regarding family involvement. Attention needs to be paid to supporting family members in decision making in collaboration with staff.

The social dynamics of devaluation in an aged care context

This article examines the way that aged care workers and clients are devalued. It is argued that they share a stigmatised and marginalised position, not experiencing recognition at individual, rights or societal levels. The research draws on a qualitative, ethnographic study of aged care and disability support, with Honneth’s recognition theory used to analyse the intersection of practice and meaning in this work. The study reveals that workers’ and clients’ presentations of a competent self are compromised by external signals of mistrust and devaluing, forms of misrecognition. These include low wages and status for workers, public and policy discourses that position them and their clients as mendicant or undeserving, and demeaning treatment from organisations. In turn, those participants who lacked a sense of themselves as uniquely valuable, as deserving of rights, and as contributing to the shared project of society, displayed practices and perspectives that were disabling of themselves and one another. Their interactions were characterised by distrust, resistance and mutual disabling. Boomageddon and silver tsunami scenarios are part of the problem; such discourses of misrecognition must be contested.

‘Knowing me, knowing you’: Disability support worker as emotional mediator?

The complexities of dating are exacerbated when couples’ getting together happens with the support of another person – the disability support worker. This paper explores the experience of Vic, a worker whose role it was to drive a couple to their dinner or movie dates. Vic’s narrative prompts consideration of how such workers position themselves within the sometimes conflicting role demands of enabler, risk manager, and mentor, negotiating the emotion work and relationship mediation roles they may be expected to perform. His narrative reveals the event as a performance of normalization, surveillance, management and othering, emotion work and feeling rules, and recognition.