The development, feasibility, and acceptability of the HEart faiLure carer support Programme (HELP)

Background:

Carers of patients with heart failure (HF) play a major role in the management and monitoring of HF symptoms. This caring responsibility can result in diminished physical and mental health for the carers, with the literature demonstrating that carers have unmet educational, social, and emotional needs. There are no interventions in the United Kingdom (UK) designed to target these needs. To address this gap, the research team co-designed the HEart faiLure carer support Programme (HELP).

Purpose:

To report the development of the HELP intervention and assess its feasibility and acceptability for carers of patients with HF.

Methods:

The HELP intervention was systematically co-designed with carers of patients with HF and healthcare professionals, which also involved the incorporation of previous evidence and theory (see Figure 1). Following intervention development, a convergent mixed methods study was conducted to evaluate the feasibility and acceptability of HELP. Carers of patients with HF were recruited via clinical teams and through online and printed advertisements. Participants received the HELP intervention over a six-week period, which involved a psychoeducational programme comprising an information booklet and four support group sessions delivered online by a multidisciplinary team. Quantitative measurements of feasibility were recorded: recruitment rate, intervention adherence, and completion. Validated questionnaires were completed by participants at baseline, post-intervention, and 12 weeks post-intervention to evaluate the following carer-related outcomes: 1) carer burden; 2) carer preparedness; 3) quality of life; 4) anxiety and depression; 5) stress; and 6) social support. Focus groups were conducted with participants post-intervention to explore the acceptability of HELP.

Results:

The intervention development process resulted in the production and refinement of HELP (see Table 1). In total, 51 carers were eligible for the mixed methods study and 22 (43%) consented to participate. Of those 22, 18 (89%) carers received the intervention, and 67% (12) attended all four sessions. Participants highly rated the usefulness of HELP, with improvements demonstrated across carer-related outcomes: carer preparedness, carer burden, anxiety, and social support. Integrated data analysis generated three key findings: 1. Improved carer preparedness, 2. Support from group environment, and 3. Improved emotional wellbeing. These results demonstrate that HELP can make carers feel supported and alleviate feelings of stress, carer burden, and worry, whilst empowering them with information to better care for their loved ones.

Conclusion:

This study demonstrated that HELP is feasible and acceptable to carers of patients with HF, with preliminary evidence of improvements in carer-related outcomes. Future work will explore the real-world effectiveness of HELP, which will inform large-scale roll out of the intervention.