Caregiver Role Stress: When Families Become Providers

Abstract

Background In view of the large number of families engaged in caregiving, this study was initiated to describe informal cancer care provision from the perspective of the caregiver. Methods A professional data collection site was used to convene focus groups in four cities. Participants included 63 caregivers, 87% of whom were female, mean age of 56 years. Caregivers responded to an open-ended question regarding the challenges of providing care. The study utilized qualitative analysis of verbatim transcripts. Transcript coding with four independent raters, using an iterative process, achieved a high inter-rater reliability. Results The project elucidates self-reported concerns confronted in cancer caregiving. Five primary themes emerged: supportive care demands, emotional toll, impact on health status, coping strategies, and rewards and affirmation. Providing supportive care introduced a balancing act in caregivers’ lives as they attempted to address complex and overlapping roles. They felt alone in their decisions, were under-prepared for tasks they assumed, and tried to shield the care recipient. Conclusions This qualitative approach confirmed past research while identifying novel concepts related to maintaining well-being and a sense of purpose despite caregiving hardships. Some aspects of caregiver suffering were identified. Caregiver self-regulation strategies revealed by this work suggest ideas for psychosocial interventions caregivers could use to protect themselves and the care recipient from impending distress.