LIVING AND DYING WITH LIVER FAILURE: A SERIAL INTERVIEW STUDY
Introduction In the UK, the incidence of liver disease is increasing dramatically and by 2030 is predicted to kill more people than heart disease. In order to effectively treat this growing patient population we need to understand their experiences. However, research in this area is still underdeveloped.
Aims and Methods To better understand the experiences, goals and support needs of patients with chronic liver failure, and to what extent existing services are perceived to meet these. We recruited 15 patients with advanced liver disease with a range of aetiologies. Up to three in-depth interviews are undertaken with patients and their informal carers over the course of 1 year. One-off interviews are also undertaken with their professional carers. The data are analysed thematically using Grounded Theory and NVivo 9.
Results Initial results indicate a high level of unmet physical needs and comorbidities. Considerable uncertainty, anxiety and confusion exist amongst patients regarding their disease and its likely progression. Interprofessional and doctor-patient communication is challenging, and advance care planning largely absent.
Conclusions This study is the first serial interview study of people with advanced progressive liver disease. They have a high and prolonged burden of physical, social and psychological unmet needs, and like heart failure and COPD patients receive much less support and palliative care than cancer sufferers.
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