Experiences, perspectives and preferences for home-based palliative and supportive care: a qualitative study of individuals with heart failure and their carers

Palliative and supportive care provided in the home for individuals with heart failure and their carers can improve quality of life, reduce symptom burden and hospital admissions. However, enabling this care in accordance with what matters to individuals living with heart failure and their carers remains elusive. This research aimed to explore the experiences, perspectives and preferences of individuals with heart failure and their carers on home-based palliative and supportive care. A qualitative study using semi-structured interviews was conducted with individuals with heart failure and carers, recruited from two tertiary care hospitals in Queensland, Australia. A total of eleven individuals with heart failure and ten carers participated. Their age ranged between 40 and 84 years. Most participants were female (n = 14, 66.7%). The themes derived from thematic analysis centred on: (a) diverse strategies for seeking emotional support, (b) acknowledging the importance of carers, (c) effective information and communication, (d) the value of home-visits, (e) telehealth enhances care (f) a circle of care: health professionals and social services supporting the individual and carer, and (g) planning for future care. Insights into the perspectives, experiences and preferences of individuals with heart failure and their carers are critical to delivering patient and carer centred palliative and supportive care in the home. Enhancing the circle of care through better communication, supporting carers and utilising telehealth, is required to deliver palliative and supportive care in the home in accordance with what matters to these individuals.