Exploring carers’ experiences of supporting a patient with advanced heart failure: a mixed methods study

Heart failure (HF) is a life-limiting condition with a poor prognosis and unpredictable trajectory. As the prevalence of HF increases so do the numbers of informal carers. This study explored negative and positive factors influential to carers’ perceptions of caring, appropriateness of a Carer Support Plan (CSP) initiative and examined the impact of caring on quality of life (QOL) of informal carers. A qualitative dominant mixed methods design followed two phases. Phase 1 was a self-completion the Family Quality of Life (FAMQOL) survey of 57 carers of HF patients recruited by community-based heart failure nurses (HFNs). For Phase 2, semi-structured interviews were carried out with 14 carers recruited from Phase 1, and data were analysed using Interpretive Phenomenological Analysis. Findings from Phase 1 showed living arrangements and how long the person had been caring was statistically significant on overall QOL, physical wellbeing and psychological wellbeing. Working status showed statistical significance; carers who had previously worked reported better overall QOL, physical health and social wellbeing. Spousal carers had significant lower social wellbeing scores than non-spousal carers. 40% of carers reported caring added purpose to their lives. Three superordinate themes emerged from the Phase 2 qualitative analysis: Emotional Impact of Caring, Living as a Carer and Carer Experience of Support. Carers experienced fragmentation in access to information and support, feelings of uncertainty and social isolation. HFNs were valued in offering support and information, and validating the role the carer provided. Younger carers faced differing challenges; they desired information and support tailored to meet their needs. The Carer Support Plan initiative was viewed as a positive means to increase awareness about supportive services. Relationships with the person cared for and formal care services influenced carer positivity. The study adds to understanding of the lived experience of carers of patients with HF. Findings point to a need for further exploration of new initiatives, for example the Carer Support Worker role and Carer Support Plan,to complement current health and social care provision.