“You get pushed to the limit… but it was worth it”: Experiences of working carers supporting older adults in advanced age at end of life

Abstract

Background: To better respond to the palliative and end-of-life (EOL) care needs of our growing ageing population, policies have advocated shifting palliative care from hospital settings to the community. This has strained informal or family or ‘lay’ carers who are the main providers of palliative and EOL care within the community. Many informal carers are also juggling their employment with caring. However, there is a lack of research that elucidates the experiences of those who are caring for someone in advanced age at EOL while also working. Aim: This study aimed to gain insight into the experiences of working carers by exploring the interaction between caregiving and employment for those who are caring for a person in advanced age at EOL. Methods: Guided by social constructionism, I conducted qualitative secondary research using data from the Te Pākeketanga: Living and Dying in Advanced Age study. After reading all 58 Te Pākeketanga interview transcripts, I selected 41 transcripts that discussed balancing work and care responsibilities. Data was analysed using reflexive thematic analysis and narrative analysis. Findings: I identified three key themes in the data. First, participants discussed the process that helped them to transition to their dual role as carer and worker. Second, being a supporter who worked and cared meant constantly negotiating their dual role to meet the increasing EOL care needs of the older adult in advanced age. This was not easy; involving balancing work and care responsibilities, finding all available resources that allowed them to continue working and caring, and making difficult decisions. Third, participants reflected on their experiences of juggling work and care after the death of their older adult. They emphasised that negotiating work and care was demanding and future working carers require more support. Despite the challenges, participants knew that the care and dedication they provided to the older person made a difference to their EOL experience. Conclusion: This is the first study in New Zealand to explore the experiences of working carers for those in advanced age at EOL. Findings from this study provide valuable insight into an under-researched group, but further research is needed to build on existing knowledge. Future policy and service delivery should explore opportunities to better support community-based palliative care that responds to the needs of older adults in advanced age and their supporters.