THE NEEDS, BURDEN AND SOCIAL SUPPORT OF THE FAMILY CAREGIVERS IN CARING FOR THE END STAGE CANCER PATIENTS IN MALAYSIA

Abstract

Caring for end-stage cancer patients is challenging because the cancer patients are usually no longer able to take complete control of their lives, and many of them require significant assistance from the family caregivers to perform their daily lives activities. Therefore, this study aims to identify the needs, caregiver burden and social support of family caregivers, and to explore in detail the reported needs using in-depth interview. This study employed a mixed methods design. A total of 75 participants age ranges from 19 to 50 years old were participated in the cross-sectional study to examine the relationship between caregiver burden, social support and the needs of family caregivers. Participants were asked to complete the online survey in Google Form consisting of demographic data and three scales. Instruments such as Needs Assessment of Family Caregiver – Cancer, The Zarit Burden Index and Medical Outcome Study Social Support. The result shows that the caregiver burden and social support explained 9.8% of the variance in needs of the family caregiver. The caregiver burden predicted the needs of the family caregivers. Five participants were then approached to be interviewed to further explore on the reported caregiving needs. The interview sessions were voice recorded and transcribed verbatim. Based on the emerging themes, family caregivers require financial needs, informational needs, social support and psychological needs in caring for the end-stage cancer patients. Findings from this study may facilitate the development of needs-based intervention to reduce the caregiving burden that eventually may improve the quality of life of the family caregivers.