Perceived burden and need for support among caregivers of cancer patients

The aims of this study were to examine (1) the perceived burden among caregivers and identify those in risk of high burden and (2) the need for support among caregivers and identify associated factors.

Cancer patients who participated in an educational program at the Montebello Center (MBC) in Norway between May 2021 and February 2022 were asked to invite a caregiver to answer a questionnaire. The caregiving burden was assessed with the Caregivers Reaction Assessment (CRA) that consists of 24 questions scored from 1 (strongly disagree) to 5 (strongly agree), covering five domains. A mean sum score was calculated for each domain. Higher subscale scores indicate higher levels of burden, except for caregiver esteem where a high score indicates a low burden. Need for support was assessed with 13 questions.

Of 464 invitations, 185 caregivers responded (response 40%), median age was 58.0 years and 58% were male. Caregiver burden mean scores were: 2.6 (SD 1.03) for Impact on schedule, 2.1 (SD 0.79) for Lack of family support, 2.1 (SD 0.76) for Impact on health, 2.0 (SD 0.86) for Impact on finances, and 4.2 (SD 0.47) for Caregiver esteem. Female caregivers, younger, higher education, having comorbidities, caring for patients having recurrence of cancer, and shorter time since diagnosis were associated with higher burden measured on individual subscales of the CRA. Most reported needs were information about: cancer, late effects and rehabilitation services and support from peers and professionals to cope with the new situation. Younger, caregiver comorbidity and recurrence of cancer of the patient were associated with more needs.

The results indicate that caregivers of cancer patients participating at the MBC report moderate caregiver burden, however, numerous caregivers reported need for support within several areas. Our findings need to be confirmed in a larger unselected group.