See the published version of this preprint at BMC Cardiovascular Disorders.
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Research article
Antonietta Cappuccio
Fondazione ISTUD
Corresponding Author
ORCiD: https://orcid.org/0000-0002-6259-8824
License:
This work is licensed under a CC BY 4.0 License. Read Full License
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.
Keywords
heart failure, narrative medicine, doctor-patient relationship, quality of life, informal caregiver
Figure 1
Figure 2
Figure 3
Figure 4
This is a list of supplementary files associated with this preprint. Click to download.
- Marcoetal.Appendix.docx
- trustcoreq.pdf
- trustappendix1.docx
Appendix 1 – Sociodemographic survey for participants. The Appendix provides the track of the sociodemographic surveys employed to collect data of, respectively, patients, caregivers, and healthcare professionals involved in the research.
- trustappendix2.docx
Appendix 2 – Illness plots and parallel charts. Narrative prompts used in the project and specifically designed by the board and the researchers of the ISTUD Foundation. The brackets stand for the space where the participants could write about their experiences.
- trustappendix3.docx
Appendix 3 – Sociodemographic data of participants. Sociodemographic data of patients, caregiver, HF specialists who participated to the project and of patients described by physicians in their narratives.
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CURRENT STATUS: Published
View the published article at BMC Cardiovascular Disorders.
Version 3
Posted 11 Dec, 2020
No community comments so far
Submission checks complete
On 02 Dec, 2020
Editorial decision: Accept
On 30 Nov, 2020
Editor assigned
On 30 Nov, 2020
Editor invited
On 30 Nov, 2020
No comments provided
Editorial decision: Minor revision
On 26 Nov, 2020
Editor assigned
On 28 Oct, 2020
Submission checks complete
On 28 Oct, 2020
Editor invited
On 28 Oct, 2020
No comments provided
Editorial decision: Major revision
On 30 Sep, 2020
Reviewer #2 agreed
On 17 Sep, 2020
Review #2 received
Received 17 Sep, 2020
Review #1 received
Received 01 Sep, 2020
Reviewer #1 agreed
On 10 Aug, 2020
Reviewers invited
Invitations sent on 19 Jul, 2020
Editor assigned
On 02 Jul, 2020
Submission checks complete
On 01 Jul, 2020
Editor invited
On 01 Jul, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Cardiac & Cardiovascular Systems
Learn more about our company.
A new preprint design is coming!
We have improved readability, clarity, accessibility, and opportunities for engagement.
See the published version of this preprint at BMC Cardiovascular Disorders.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research article
Antonietta Cappuccio
Fondazione ISTUD
Corresponding Author
ORCiD: https://orcid.org/0000-0002-6259-8824
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at BMC Cardiovascular Disorders.
Version 3
Posted 11 Dec, 2020
No community comments so far
Submission checks complete
On 02 Dec, 2020
Editorial decision: Accept
On 30 Nov, 2020
Editor assigned
On 30 Nov, 2020
Editor invited
On 30 Nov, 2020
No comments provided
Editorial decision: Minor revision
On 26 Nov, 2020
Editor assigned
On 28 Oct, 2020
Submission checks complete
On 28 Oct, 2020
Editor invited
On 28 Oct, 2020
No comments provided
Editorial decision: Major revision
On 30 Sep, 2020
Reviewer #2 agreed
On 17 Sep, 2020
Review #2 received
Received 17 Sep, 2020
Review #1 received
Received 01 Sep, 2020
Reviewer #1 agreed
On 10 Aug, 2020
Reviewers invited
Invitations sent on 19 Jul, 2020
Editor assigned
On 02 Jul, 2020
Submission checks complete
On 01 Jul, 2020
Editor invited
On 01 Jul, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Cardiac & Cardiovascular Systems
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at BMC Cardiovascular Disorders.
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.
Figure 1
Figure 2
Figure 3
Figure 4
This is a list of supplementary files associated with this preprint. Click to download.
- Marcoetal.Appendix.docx
- trustcoreq.pdf
- trustappendix1.docx
Appendix 1 – Sociodemographic survey for participants. The Appendix provides the track of the sociodemographic surveys employed to collect data of, respectively, patients, caregivers, and healthcare professionals involved in the research.
- trustappendix2.docx
Appendix 2 – Illness plots and parallel charts. Narrative prompts used in the project and specifically designed by the board and the researchers of the ISTUD Foundation. The brackets stand for the space where the participants could write about their experiences.
- trustappendix3.docx
Appendix 3 – Sociodemographic data of participants. Sociodemographic data of patients, caregiver, HF specialists who participated to the project and of patients described by physicians in their narratives.
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