The Burden of Responsibility: Exploring the Social and Emotional Challenges Faced by Informal Caregivers of People With Heart Failure in Australia

Background: Informal caregivers of people with heart failure play a critical role in the self-management of heart failure in the community. The quality of the caregiving dyad relationship is associated with a range of well-being outcomes for the caregiver, including those associated with social and emotional needs. Objective: Our aim was to explore the social and emotional challenges of informal caregivers of people with heart failure in Australia and to consider the impact of the relationship within the caregiving dyad on these challenges. Methods: Semi-structured interviews were conducted with 11 informal caregivers of people with heart failure, exploring concepts of dyad typology, relationship satisfaction, and emotional and social needs. Data were analyzed using the Braun and Clarke reflexive thematic analysis approach. Results: The majority of participants were in spousal relationships, identified their dyad typology as collaborative, and had positive relationship satisfaction. Five themes were identified from the data: pressure and burden, psychological impact, help seeking, caregiving for life, and consistency of change. Participants were able to separate both their emotional and social needs and identify how they could be met. Conclusions: The lived experience of informal caregivers of people with heart failure in Australia is complex. While managing the burden associated with caregiving, caregivers experience a broad range of emotions, from anxiety, fear, and guilt, in an ever-changing environment. When addressing the emotional and social needs of informal caregivers, it is crucial to understand that social and emotional needs are separate concepts and meeting one set of needs will not necessarily meet the other.