Comparison of the Burden Evolution of the Family Caregivers for Patients With Cancer and Nononcological Diseases Who Need Palliative Care: A Prospective Longitudinal Study

Palliat Med Rep. 2023 Jul 17;4(1):161-168. doi: 10.1089/pmr.2022.0067. eCollection 2023.

Abstract

Background: The family caregiver (FCG) is with the patient from diagnosis till the end of life. The accumulated burden has a negative impact on the caregiver's quality of life and on his physical and emotional well-being.

Objective: To quantify the burden of care for a patient with palliative needs, and to compare the burden experienced by caregivers for nononcological patients with those for cancer patients.

Design: Prospective longitudinal study.

Setting/participants: One hundred forty patient-primary caregiver pairs participated in the study, which were separated into two groups: those who cared for patients with nononcological diseases (n = 63) and those who cared for patients with cancer (n = 77).

Measurements: The burden measurement was assessed with Burden Scale for FCGs.

Results: The average score of the FCG's burden was significantly higher in the nononcological group (45 ± 14.45 vs. 36.52 ± 15.05; p = 0.001). In the case of caregivers for cancer patients it is noticed that the caregivers' burden decreases after the intervention of the specialized team (45.58 ± 14.11 at T1 vs. 36.65 ± 16.10 at T2; p = 0.001). The burden values for caring for patients with nononcological diseases remained in the plateau, indicating incremental caregiver adaptation, although the rising trend is still present toward the end of the term (47.43 ± 13.32 vs. 56.69 ± 15.44; p < 0.001).

Conclusions: The burden dynamics are different depending on the patient's disease, duration of care, degree of dependence, number of comorbidities, and on the intervention of the palliative care team that ensures the support of the caregiver for the palliative patient.

Keywords: burden; family caregiver; nononcological disease; palliative care.