Suffering and Healing in the Context of LVAD Treatment.
LVAD
illness narratives
patient experience
suffering and healing
Journal
Journal of clinical medicine
ISSN: 2077-0383
Titre abrégé: J Clin Med
Pays: Switzerland
ID NLM: 101606588
Informations de publication
Date de publication:
11 May 2019
11 May 2019
Historique:
received:
28
03
2019
revised:
03
05
2019
accepted:
07
05
2019
entrez:
15
5
2019
pubmed:
15
5
2019
medline:
15
5
2019
Statut:
epublish
Résumé
Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent. This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment. Narratives were collected from in-depth interviews with patients who accepted ( Participants shared "restitution" narratives that most commonly conveyed a shift from pre-implant physical suffering and "daily hell," fatigue so intense it "hurts," along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a "journey," "getting one's life back" and becoming "normal" again. For LVAD patients, other patients' illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient-practitioner communication and understanding by highlighting perspectives and values that structure patients' clinical experiences.
Sections du résumé
BACKGROUND
BACKGROUND
Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent.
AIM
OBJECTIVE
This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment.
METHODS
METHODS
Narratives were collected from in-depth interviews with patients who accepted (
RESULTS
RESULTS
Participants shared "restitution" narratives that most commonly conveyed a shift from pre-implant physical suffering and "daily hell," fatigue so intense it "hurts," along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a "journey," "getting one's life back" and becoming "normal" again.
CONCLUSION
CONCLUSIONS
For LVAD patients, other patients' illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient-practitioner communication and understanding by highlighting perspectives and values that structure patients' clinical experiences.
Identifiants
pubmed: 31083545
pii: jcm8050660
doi: 10.3390/jcm8050660
pmc: PMC6571968
pii:
doi:
Types de publication
Journal Article
Langues
eng
Subventions
Organisme : Patient-Centered Outcomes Research Institute
ID : CDR-1306-01769
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