The emotional and social burden of heart failure: integrating physicians', patients', and caregivers' perspectives through narrative medicine.
Activities of Daily Living
Aged
Attitude of Health Personnel
Cardiologists
/ psychology
Caregivers
/ psychology
Cost of Illness
Cross-Sectional Studies
Emotions
Female
Health Knowledge, Attitudes, Practice
Heart Failure
/ diagnosis
Humans
Italy
Male
Middle Aged
Narrative Medicine
Patients
/ psychology
Physician-Patient Relations
Quality of Life
Social Behavior
Doctor-patient relationship
Heart failure
Informal caregiver
Narrative medicine
Quality of life
Journal
BMC cardiovascular disorders
ISSN: 1471-2261
Titre abrégé: BMC Cardiovasc Disord
Pays: England
ID NLM: 100968539
Informations de publication
Date de publication:
12 12 2020
12 12 2020
Historique:
received:
17
06
2020
accepted:
02
12
2020
entrez:
14
12
2020
pubmed:
15
12
2020
medline:
2
2
2021
Statut:
epublish
Résumé
The 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 HF on the daily life of patients and their carers. 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. 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. 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.
Sections du résumé
BACKGROUND
The 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 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.
Identifiants
pubmed: 33308152
doi: 10.1186/s12872-020-01809-2
pii: 10.1186/s12872-020-01809-2
pmc: PMC7733244
doi:
Types de publication
Comparative Study
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
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