‘I need to know, just put me in the picture’: a qualitative study of the lived experiences and supportive care needs of patients with hepatocellular carcinoma

Objective Supportive care is considered an integral part of cancer care, but little is known about the supportive care needs (SCNs) of patients with hepatocellular carcinoma (HCC). This study aimed to examine the lived experience of patients with HCC and report on their SCN. Methods A qualitative, semistructured interview of 23 patients with HCC was undertaken. Interviews were recorded and transcribed, and the data were analysed using reflexive thematic analysis to gain insight into the met and unmet SCN of patients with HCC. Results Three thematic areas of focus were derived from the analysis: (1) coping with uncertainty; (2) dependence on familial and social networks to meet SCN and (3) communication with healthcare professionals and access to specialised nursing support. Conclusions We identified specific informational and practical SCNs of patients with HCC. Our participants largely relied on family and support networks to meet these SCNs, leading to concerns about carer burden. Access to specialised nurses who could assist patients in navigating health and healthcare systems was universally valued by patients as a method by which the health service could meet some of these SCNs.