The emotional and social burden of heart failure: integrating physicians', patients', and caregivers' perspectives through narrative medicine.
BMC Cardiovasc Disord
; 20(1): 522, 2020 12 12.
Article
em En
| MEDLINE
| ID: mdl-33308152
ABSTRACT
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.Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Pacientes
/
Comportamento Social
/
Atitude do Pessoal de Saúde
/
Cuidadores
/
Efeitos Psicossociais da Doença
/
Emoções
/
Cardiologistas
/
Medicina Narrativa
/
Insuficiência Cardíaca
Tipo de estudo:
Diagnostic_studies
/
Observational_studies
/
Prevalence_studies
/
Risk_factors_studies
Limite:
Aged
/
Female
/
Humans
/
Male
/
Middle aged
País/Região como assunto:
Europa
Idioma:
En
Revista:
BMC Cardiovasc Disord
Assunto da revista:
ANGIOLOGIA
/
CARDIOLOGIA
Ano de publicação:
2020
Tipo de documento:
Article
País de afiliação:
Itália