This study explores the role that families play in the experience of living with heart failure, and the ways in which health-care providers can help families to improve and sustain constructive support systems. The contribution of families in supporting a family member living with a long-term condition merits exploration, but little research has been undertaken in this area. This study focused on heart failure as an example of a long-term condition that is progressive but for which morbidity is strongly influenced by the effectiveness of self-care strategies. The study explored perceptions of the role of the family from the perspective of the person living with heart failure, from family members and from health-care providers.
Methodology
Twenty-four families took part in family group interviews, and one group interview was run with health-care providers. In total, 70 people took part in the study. The interviews were semi-structured and mainly conducted in people’s homes. Purposive sampling ensured that some diversity was obtained in the age and ethnicity of those interviewed. Pseudonyms have been used throughout this report to protect the anonymity of families.
Key Results
The findings of this research indicate that the generation of a shared understanding of heart failure as a long-term condition and adaptation to it by the family unit is important. The provision of support that is flexible and can change over time to meet developing needs is vital. The availability of knowledgeable and accessible services – in particular, primary health-care and specialist cardiology services – was acknowledged as important. The involvement of family members in the health-care system provides reassurance, knowledge about the condition and management that in turn leads to a sense of confidence within the family about managing heart failure; particularly important is support for the development of self-care strategies for medication and diet.