ABSTRACT
BACKGROUND: The global burden of heart failure is estimated to be around 64 million people, with many needing care and support for daily living activities. These needs are usually filled by close relatives, often a spouse, and therefore someone of a similar age to the person for whom they care. OBJECTIVES: The aim of this study was to explore the needs and experiences of caregivers caring for a person with heart failure through a qualitative interview approach. METHODS: A qualitative study was conducted in a large region in South England. 17 caregivers were interviewed using a semi-structured approach and the data analysed using thematic analysis. RESULTS: Four themes were identified from the data: a) Taking on the role of caregiver with the sub-themes of: acceptance and life changes; b) Getting to grips with being a caregiver with sub-themes: carrying out the care and coping with the care; c) Impact on own health and wellbeing: sub-themes of physical health and mental and emotional health and finally: d) Need for information and Support with sub-themes: trying to get knowledge and making sense. CONCLUSIONS: This study has shown that heart failure caregiving can have a negative impact on caregivers' own health and wellbeing and involves complex care delivery for which they receive little support. Caregivers of people with heart failure report having significant information needs in order to understand the reasons for the care they provide yet feel marginalised by health care professionals.
