A qualitative exploration of cAregiver experienCes Of conseRvatively maNaged kidney failure:the ACORN study

Introduction Patients with kidney failure who are older, frail and have multiple conditions can choose not to receive dialysis and instead receive conservative management, which focuses on symptom management and maximising quality of life. Many of these patients rely on support from informal caregivers, such as family and friends. However, the experiences of informal caregivers of people who choose conservative management, particularly towards the end of life, are generally unknown. Aim To explore the experiences of informal caregivers of people receiving CM for kidney failure alongside healthcare professionals who provide treatment and care to people receiving CM to identify and understand the unmet needs of informal caregivers. Methods Informal caregivers of patients receiving conservative management (n = 38) were recruited from five sites, two in England and three in Northern Ireland. Semi-structured interviews focused on the experiences of the caring role were conducted with informal caregivers and thematically analysed. Focus groups and one semi-structured interview were conducted at two sites (one in Northern Ireland, one in England) with healthcare professionals who had experience caring for people receiving conservative management (n = 15). The focus groups explored their experience of supporting informal caregivers and their perspectives on the needs of informal caregivers. These were thematically analysed, and the analysis from the two data sets (informal caregivers and healthcare professionals) was integrated. Results Three themes and nine subthemes were synthesised from the data. These included: Defining the role of ‘carer’, which captured perspectives on the caring role and motivations for caring; keeping the end in mind, which described attitudes and awareness of disease progression and death; and balancing the burden, which encapsulated the ways informal caregivers managed the burden of caring. Conclusion Informal caregivers had multifaceted experiences and felt well-supported by renal healthcare teams. Cultural factors strongly influence caregivers’ experiences of the role, while communication and the provision of information were identified as the key needs of caregivers.