Systemic Work of Carers of Community Dwelling Older People with Complex Care Needs: A Qualitative Study of Carers' Experiences

Abstract

Informal carers provide the majority of direct care to older Australians and play an essential role in assisting older people with complex care needs to remain living in their own homes. With greater emphasis on the community as a more appropriate site for responding to and managing the needs of older people, carers are increasingly faced with systemic responsibilities, including coordination of fragmented services and providers across multifaceted health and aged care systems and negotiation of treatment and supports. Consequently, this work may be perceived by carers as burdensome. The aim of this qualitative study was to explore the lived experiences of carers of community-dwelling older adults in undertaking the systemic work of caring. Specifically, the aim was to explore their experiences of managing and coordinating treatment and supports across multiple services and systems. The concept of Burden of Treatment was used to understand the work of navigating, negotiating and managing care of the older person, how carers made sense of this, and what personal resources they drew on. A descriptive phenomenological approach was taken to guide the research. Semi-structured interviews were conducted with 16 carers of community-dwelling older adults with complex care needs. Giorgi’s phenomenological data analysis methods (1997) was utilised for the data analysis. Two main themes were derived from the analysis, each comprising three sub-themes. The first theme, Becoming part of the caring system, comprised: (a) Entering the caring system, (b) A sense of obligation and duty, and (c) Work at the nexus of present and future. The second major theme, Mastering the caring system, comprised: (a) Making connections, (b) Activating the management plan, and (c) Voicing and advocating needs in the caring system. Participants felt a sense of expectation and responsibility from others, including family and health and aged care providers to take on the caring work. Many perceived they had no alternative but to respond to systemic demands when seeking to manage the needs of the older person and described the challenge of this work as managing multiple and complex organisational and administrative processes across different systems while locating, accessing and coordinating services for the older person. The findings showed an experience of being adrift and having to piece together disjointed pathways. Participants also described the work of trying to make systems more responsive to the older person for a better outcome. Furthermore, the findings illustrated the varied skills required to master the systemic work, including administrative, communication, advocacy, problem-solving and negotiation abilities. Some carers drew on personal resources, robustness and abilities while others often felt overwhelmed and unsure of how to proceed. The findings indicate that through addressing the systemic work placed on carers, the burden placed on them can be alleviated. From a system perspective, streamlining and reducing duplication of assessments, improving information access, improving communication and targeting partnerships between differing organisations can reduce system complexity which in turn will reduce the demands made on carers. Consideration of models of system navigation, care co-ordination, and case management would support those who struggle to independently master the system. The findings also suggest that there is scope for health care professionals and service providers to better identify carer requirements and assess carer capacity to manage the work. Without investment to assist carers to do the increasingly complex work, there is a risk of disparity between those that are equipped to access services and supports and those that will that continue to flounder and forego appropriate care for the older person and support for themselves.