The influence of caregiver burden on bereavement outcomes of spousal and adult-child family caregivers of patients who have died of cancer

Background: Family caregivers (FCs) provide unpaid care to patients, outside of a formal framework. A demographic imperative currently exists to allow patients to be cared for in their own homes. FCs are a vital part of this support. However, their needs, and the burden of caregiving, are often under-recognised. Challenges facing FCs, in particular adult-child FCs, include a need to combine paid employment and other family commitments with caregiving. Negative consequences associated with caregiving include a higher risk of complicated grief in bereavement. Aims: To describe and compare the bereavement outcomes of spousal and adult-child FCs of patients who died of cancer, and to evaluate the factors of care associated with adverse bereavement outcomes for each FC group.

Methods: Secondary data analysis was performed of data regarding bereavement outcomes, as measured by the Texas Revised Inventory of Grief (TRIG) scores of participants in the QUALYCARE study – a mortality follow-back study of FCs.

Results: 484 caregiver-patient dyads were included: 246 adult-child FCs and 238 spousal FCs. Spousal FCs were older (68.4 vs. 50.7 years, p < 0.001). Caregiving intensity was similar in both groups of FCs, but adult-child FCs were more likely to continue working outside the home while caregiving (χ2, p < 0.001). Patients with adult-child FCs were more likely to die in a nursing home than those with a spousal FC (p < 0.001). Grief intensity was highest in spousal FCs whose relative had died in hospital or a nursing home, and lowest in adult-child FCs whose relative had died in a nursing home (n = 31, p < 0.001). Caregiver burden predicted 11.6% of variance in grief intensity for adult-child FCs vs. 0.5% for spousal FCs.

Conclusions: Caregiving burden has particular implications for adult- child FCs as compared to spousal FCs, in terms of bereavement outcomes. Role strain describes overlapping responsibilities with simultaneous family roles. The risk of complicated grief may be modifiable through ensuring the provision of practical supports, as well as psychological support for the caregiver, and the excellent management of both physical and psychological symptoms experienced by the patient.