Bereaved caregivers’ lived experiences of the home deaths of patients treated with palliative intent

Abstract

Background: A home death is not feasible without having an informal caregiver in the picture. Such a profound and challenging experience requires support, if it is to be accomplished. However, relatively few studies focus on the lived experiences of informal caregivers who have supported a loved one through a home death. Objectives: The study aimed to delve into the informal primary caregivers’ experiences of the home deaths of their loved ones and who were additionally receiving community palliative care services. The objectives were to examine the decision-making process for choosing a home death; to identify the factors that facilitated the home death; to explore the challenges faced by the primary caregivers; to identify strategies that helped primary caregivers cope; and to identify strategies that the caregivers would deem useful. Design: A qualitative, hermeneutic, phenomenological approach was employed and Interpretative Phenomenological Analysis (IPA), as described by Smith et al. (2022), guided the research process. Setting & Participants: Seven informal primary caregivers who had cared for a loved one through the course of the illness and the eventual home death and who (the patients) were additionally being supported by the local community services. Methods: Purposive sampling was used to recruit the participants. Data was collected through a semi-structured audio-recorded interview with each participant. The data was transcribed verbatim and analysis was done using IPA. Results: Three Group Experiential Themes emerged that described the lived experiences of informal primary caregivers; ‘Plunged into an unforeseen journey’, ‘The rollercoaster journey’ and ‘The final destination’. Conclusion: While caregivers derived profound meaning from their roles, they also faced significant emotional, physical, financial, and social challenges. Key enablers of a successful home death included early access to palliative care, strong professional and familial support, and adequate coping resources. The study emphasises the critical need to better understand and address the caregivers needs so as to make home deaths a feasible option for more families.