Abstract

Background As the number of older people living with multiple chronic health conditions increases, there is a growing recognition of the burden associated with management of these conditions, for both the person with multimorbidity (PwM) and their caregivers. Care support networks for older PwMs increasingly include paid care assistants, yet there has been little examination of the challenges experienced by such care workers in supporting their clients. The current study aimed to explore the experience of care workers in Ireland, who support community dwelling older people with multiple conditions. The data presented were collected as part of a wider requirements gathering study to inform the design of ProACT, a digital health ecosystem that aims to improve integration of care for older PwMs. Methods Semi-structured focus groups were conducted with experienced care workers and care managers (n = 16; 100% = female) providing home care support for PwMs in two counties in Ireland. Data from the focus groups were transcribed and analysed using an iterative thematic analysis approach. Results A range of challenges are experienced by paid care workers who support older PwMs in a home care context. These include a lack of information needed to support clients, poor communication across the care network, insufficient time to provide care, inadequate training and work-related psychological stress. Conclusion Like the term ‘treatment burden’, the concept of a ‘burden of care’ may be both relevant and under-recognised in paid caregivers. Additional research is needed to further explore the burden of care experienced by paid care workers and to inform potential strategies and responses to reduce such burden for this critical cohort of care providers.

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