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Original Articles

Perceived burden and need for support among caregivers of cancer patients

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Pages 794-802 | Received 28 Oct 2022, Accepted 07 Jul 2023, Published online: 04 Aug 2023
 

Abstract

Background

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.

Materials and methods

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.

Results

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.

Conclusions

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.

Acknowledgments

The authors wish to acknowledge the work and collaboration of the staff at the MBC and the caregivers of cancer patients who participated in the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy and ethical restrictions.

Additional information

Funding

This project was supported by a grant from The Norwegian Radium Hospital Foundation.