Caregiver’s burden at the end of life of their loved one: insights from a longitudinal qualitative study among working family caregivers

BACKGROUND: Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time. METHODS: Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home. Transcripts were analysed as a single unit to create timelines per participant. Next, individual burden trajectories were created and grouped based on the course of burden over time. Factors related to changes in burden were analysed, as well as similarities and differences between the groups. RESULTS: It was common for family caregivers who combine work and end-of-life care to experience a burden. Two trajectories of caregiver burden were identified; caregivers with a persistent level of burden and caregivers with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory, but were often able to cope with the situation by making arrangements in care or work. Caregivers with an increasing burden were unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave. In both groups, burden was mostly related to aspects of the care situation. The emotional burden, a decreasing burden after death and a different view on the trajectory in hindsight proved to be important overarching themes. CONCLUSIONS: Providing care to a loved one nearing the end of life is often emotionally burdensome and intensive. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-022-01031-1.