Sharing patients’ and informal caregivers’ experiences - using symptom exacerbation narratives to reducing delay in seeking care among people with Heart Failure.

The overall objective of this study is to explore symptom exacerbation experiences of people with HF and their informal caregivers, and to assess the impact of using symptom exacerbation experience narratives on people with HF and their informal caregivers.

People with heart failure (HF) often delay seeking care when they experience symptoms of worsening HF. Presenting later with more severe symptoms at the hospital is associated with a higher risk of serious health consequences. The timely seeking of care is a vital self-care activity which is strongly recommended by the European Society of Cardiology guidelines for the diagnosis and treatment of acute and chronic HF. However, only little is known about how to reduce the delay in seeking care among people with HF.

The project consists of two separate studies, each using different methods: an exploratory qualitative study (HEALTH EXPERIENCE 1) and a quasi-experimental study (HEALTH EXPERIENCE 2).

HEALTH EXPERIENCE 1 involves people with HF and their caregivers who can remember a situation of worsening HF symptoms. Narrative interviews will be conducted with the participants to understand their experience of worsening symptoms prior to hospitalisation.

Excerpts from the narrative interviews will be compiled and used for HEALTH EXPERIENCE 2.

In HEALTH EXPERIENCE 2, participants will view these excerpts. The researchers will assess the impact of these excerpts on perception of elevated risk and HF self-care among people with HF and their caregivers. This includes the perception and interpretation of symptoms and the decision to seek care.

This project will in the future enable the provision of high-quality research-based narratives, which can play an essential role in offering concrete support to people with HF and their caregivers

This project is carried out in the canton of Fribourg, in a collaboration between the Haute Ecole de Santé Fribourg (HEdS-FR) and the Fribourg Hospital (HFR).