The emotional and social burden of heart failure: integrating physicians’, patients’, and caregivers’ perspectives through Narrative Medicine.

Abstract

Background: The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the perspectives of people with heart failure (HF), their informal caregivers and HF specialists of the impact of heart failure (HF) on the daily life of patients and their carers. Methods: Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. Results: 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients’ and their caregivers’ daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. Conclusions: This NM project illustrates the complex issues of living with HF and gave insights to integrate three different perspectives into the HF pathway of care.

Narrative medicine: feasibility of a digital narrative diary application in oncology

“…17 Several narrative research studies on illness narratives and parallel charts (personal notebooks in which clinicians can write down reflections and feelings) have provided insights for clinical practice and health care service organizations. 18,19…”

“…17 Several narrative research studies on illness narratives and parallel charts (personal notebooks in which clinicians can write down reflections and feelings) have provided insights for clinical practice and health care service organizations. 18,19 Time spent producing narratives is treatment time that does not necessarily create a burden on organizations and caregivers. 20 On the contrary, facilitating treatment adherence and teamwork can substantially reduce time and costs.…”