Longitudinal trajectories of caregiving experiences among primary informal caregivers of patients with metastatic solid cancer (stage IV)

Objective Cancer is a significant cause of mortality worldwide. The diagnosis of advanced cancer affects both patients and their family caregivers. Understanding the course of both negative and positive experiences of caregiving provides a more comprehensive understanding of the caregiving experience. The study aims to identify joint trajectories of burden and esteem among family caregivers of patients with solid metastatic cancer, and to identify caregiver characteristics that predict membership for each delineated trajectory. Methods A prospective longitudinal study of 346 informal family caregivers of patients with solid metastatic cancer were recruited between July 2016 and December 2019. Surveys were conducted every 3 months for 2 years. We assessed caregiver burden and positive aspects of caregiving using the modified Caregiver Reaction Assessment. We estimated the joint trajectories for these outcomes using group-based multi-trajectory modelling. Results We identified 4 trajectories describing caregivers with (1) low burden, moderate esteem (38.3%), (2) low burden, high esteem (20.3%), (3) high burden, low esteem (16.4%), (4) high burden, high esteem (24.9%). Compared to the 'low burden, high esteem' trajectory, male and non-spousal caregivers were more likely to experience high burden and esteem while caregivers from low socioeconomic status were more likely to belong to trajectories with a high burden. Conclusion Recognising caregivers at high risk of belonging to trajectories with high burden or low esteem may enable healthcare professionals to anticipate and provide appropriate support to mitigate the impact of negative outcomes.