Needs and burden of informal heart failure caregivers: the HF2Care study

People affected by HF require a high level of care and must perform good self-care to prevent the worsening of the disease and to maintain their psychological well-being. Given this issue, informal caregivers (CG) may offer an important contribution to patients’ care. However, knowledge on caregivers’ needs— physical, psychological, social, economic and environmental needs—is still poor. Recent literature shows that being a CG imposes a substantial burden that increases over the trajectory of the illness and affects CG quality of life. Despite the importance of CG in HF care, few studies have explored the needs and burdens of HF CG in relation to the CG and patient characteristics.

The aim of this study is to describe HF caregivers’ needs and burdens, and to associate HF caregivers need and burden to specific caregivers’ (e.g., amount of caregiving hours) and HF patients’ characteristics (e.g., NYHA class) in three European countries.

 This is an exploratory sequential mixed-method study that is going to be conducted in two phases. The first phase is qualitative and data have been already collected on Spanish and Italian HF caregivers with face-to-face interviews. The interviews, with 21 open-ended questions, have been conducted in each country in the native language, have been digitally recorded and transcribed verbatim. Content analysis will be used to analyse them. The second phase, that is quantitative and is still ongoing, will consist of two data collections at 6 and 12 months from enrolment. Quantitative data will be analysed with descriptive and inferential statistics. Qualitative and quantitative data will finally be merged to understand the complex nature of HF caregiving, matching caregivers’need and burden with patients and CG characteristics. Results: Spain has already concluded the first phase of the study, while Italy and Netherlands are still enrolling the caregivers. To date, 92 caregiver and patient dyads have been enrolled in Spain. These caregivers were 59.7 (± 14.4) years old, mostly females (77.2%), patients’ spouses (31.6%) or adult children (60%). HF patients were 82.2 (± 8.3) years old and equally distributed among females (50.5%) and males. The caregivers provided their patients with an average of 11.6 (± 9) hour of caregiving per week, and most of them declare to live with the patients (52.2%). The 23.9% of caregivers were unemployed because of caregiving and just the 17.4% of caregivers reported enough income which allowed them to live well. Content analysis on the interviews is in progress, results will be available for the Congress.

 Results of this study will allow a better characterization of HF caregiver needs and burden. Since literature shows that caregivers’need and burden influence HF patients’ outcomes, we expect the results of this study have the potential knowledge to develop interventions for caregiver well-being and indirectly for patients’ outcomes.