Family carers\u2019 involvement strategies in response to sub-optimal health services to older adults living with dementia \u2013 a qualitative study

Kristin Häikiö,Jorun Rugkåsa,Mette Sagbakken

doi:10.1186/s12877-020-01663-z

Abstract

BackgroundWhile dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities.MethodsQualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology.ResultsTwo main involvement strategies were identified: 1) being “the hub in the wheel” and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers’ weighing conflicting concerns and perceived costs and benefits.ConclusionsAwareness and acknowledgment of family carers’ strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers’ own perspectives on carer involvement is a necessary precursor to developing good care partnerships.

Highlights

While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded
Despite the good intentions of policies, research has identified substantial differences in family carers’ personal experiences of involvement in dementia care [21, 22] In the UK and in Norway, some studies report that many family carers are satisfied with the ways they are involved and supported in their role [23, 24] other studies, in contrast, find that many family carers experience that they are not involved, despite their important insights into the situation of the person living with dementia [6, 21, 25]
Rectifying incomplete information flows between families and services Many participants had experienced incomplete information flows between themselves, the person living with dementia, and healthcare personnel

Summary

Introduction

While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Carers are contributing significantly to the care of older adults living with dementia [1], in terms of personal care, supporting daily activities, and interacting with healthcare personnel [2,3,4,5] Their role is described in international and Norwegian health policy documents as a means of enhancing the quality of care, utilizing potential care recourses in both formal (services) and informal (family) sectors, and providing care tailored to individual needs [6, 7]. According to the World Health Organization (WHO), partnerships in care should be based on trust, equality, mutual understanding, shared goals, and shared accountability [14] This is reflected in policy documents, such as the UK strategy for family carers, which emphasizes that healthcare personnel should consider family carers as partners in care and recognize their unique expertise [13, 15]

Results

Discussion

Conclusion