"I am nurse, I am partner, I am cook – I am everything..." roles and functions of relatives in supporting therapy adherence and abstinence in patients with alcohol-related liver cirrhosis prior to listing for liver transplantation: a qualitative anal

BACKGROUND: Alcohol-related cirrhosis is an important indication for liver transplantation (LTX) in Germany and worldwide. In Europe, the USA, and Canada patients with alcohol-related cirrhosis often have to maintain at least six months of abstinence and demonstrate treatment adherence before being listed for transplantation. Nevertheless, country-specific exception policies may allow earlier liver transplantation in selected cases. These requirements, combined with the severity of the disease, create challenges for patients, their relatives and the healthcare system. This study aimed to examine the roles and functions of family members in supporting adherence to therapy and maintaining abstinence in patients with alcohol-related cirrhosis prior to LTX listing. METHODS: A total of 35 interviews were conducted, including narrative interviews with 10 relatives, 11 patients, and 3 former patients, as well as semi-structured interviews with 11 healthcare professionals from different LTX centers across Germany. Interviews were audio-recorded, transcribed, and analyzed using qualitative content analysis. RESULTS: Relatives played a central role in supporting therapy adherence and abstinence, particularly by actively assisting with the implementation of treatment recommendations. They also assumed significant responsibility for acquiring and applying health literacy. Additionally, family members provided critical emotional support, yet their own psychosocial needs were often overlooked, leaving them without sufficient resources to cope with the associated burdens. CONCLUSIONS: Building on our findings, we propose a family-centered integrated model for patient-centered care in advanced liver disease and LTX. This model emphasizes the recognition and support of family members in clinical practice, aiming to improve both patient outcomes and the well-being of relatives involved in the care process.