In the context of an aging population and increasing pressure on health system resources, current policy frameworks increasingly promote aging-in-place strategies and collaborative models of homecare delivery involving both formal care providers and informal supports, working in partnership with the client. However, evidence on which to base the design of such models is limited. This study investigated the relationships between people receiving long-term home-based support services, their informal carers and the formal provider organisations delivering their care in order to inform homecare service development.
Design and methods
The study used qualitative methods, interviewing a small sample of homecare clients from a single provider in Canterbury, New Zealand and a number of their informal carers. Participants included both Māori and non-Māori to enable investigation of any ethnic and cultural differences between those two population groups in their experience of formal homecare. Interviews were transcribed and a thematic analysis was undertaken. The identified themes were analysed with reference to the body of related research evidence and also grey literature documenting policy and macro-environmental factors impacting on the homecare sector in Canterbury. A combination of critical theory perspectives was applied to analyse the interview data. They include critical theory relating to issues of power in health service provision, critiques of neo-liberal theoretical influences in health policy direction, and a contemporary ethics-of-care perspective.
Findings, conclusions and implications
The first theme identified related to participants’ experience of power in the relationships with the formal provider. An important initial finding was that participants consistently differentiated between their formal care workers, the formal provider organisation and the overarching formal systems governing service provision. Participants experienced notably different power dynamics relative to each of these three aspects of the formal provider identity. For example, the traditional, hierarchical health professional/client power imbalance was significantly moderated in the homecare context by participant empathy for the formal care worker. In addition, I found that the critical perspectives of the participants, in particular their understanding of systemic issues governing health service delivery, mediated their frustration with service failures on the part of the formal service provider organisation. Both of these findings – the propensity for empathy with their formal care worker, and tolerance of service failures given appreciation of systemic issues, appeared to hold true despite experiences of personal powerlessness within the formal care relationship, including many that were intense and repeated. Finally, I found that participants reported the most acute sense of powerlessness relative to the overarching health systems determining their experience of formal health care.
The second theme explored the participants’ experience of feeling overwhelmed by the complexity of the health system. The findings suggest that the multiple, interconnecting policy frameworks that impact on the participants’ experience, under-estimate the complexity of home-based care work. I argue that this failure of policy frameworks to address the complexity of care work is linked to systemic under-valuing and under-resourcing of formal homecare services. I conclude that because of that undervaluing, clients are at risk from increasing isolation, inflexible services with frequent service failures, breakdown of integration of complex care, and that informal carers are not adequately supported given the increasing complexity of care in the community.
Finally, using the findings, I present a case that by adopting strategies to empower formal support workers, clients and informal carers alike, formal providers could create the foundation for a powerful alliance to address the systemic issues identified.