Family members’ perspectives of caring for patients with terminal hepatocellular carcinoma.

Abstract

323 Background: Hepatocellular carcinoma (HCC) is a growing problem worldwide and accounts for more than 700,000 deaths annually. There is no curative treatment for those diagnosed with terminal HCC. This group of patients differs from other populations with liver disease or cancer due to the combined disease processes of cancer and liver failure. Although family members often play an integral role in providing care, no study was found specifically examining family member experiences of caring for patients with terminal HCC. The aim of this study was to describe family members’ experiences and perceptions of providing care for patients with HCC as they near the end of life. Methods: This longitudinal, prospective pilot study described here presents the qualitative results of semi-structured in-person interviews with a convenience sub-sample of 13 family members conducted once a month for up to a 6-month period. The interview guide included questions about family member experiences of providing care for patients living with HCC and any current concerns of significance. Interview data were analyzed using conventional content analysis. Results: Analysis included a total of 39 family member interviews. Ten family members were female and three were male (mean age = 56 years, range = 22-68 years). Family members’ relationships to patients varied and included: spouses, siblings, adult children, parents, and ex-spouses. The analysis resulted in four major themes: perception of and response to terminal HCC diagnosis, HCC progression, symptom assessment and interpretation, and challenges of providing care. Findings were colored by complex relationships between family members and patients that changed or did not change as the disease progressed. Conclusions: This study contributes new knowledge to begin developing interventions that address family members’ need for support, help, and information as the disease progresses and at the end of life. Future research should include a larger sample size that is more ethnically and racially diverse, includes more male family members, and focuses on how care provided by family members may vary based on kinship, and relationship dynamics.