Background The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the impressions 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 new insight into integrating 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.
Loading...
On 02 Dec, 2020
On 30 Nov, 2020
On 30 Nov, 2020
On 30 Nov, 2020
On 26 Nov, 2020
On 28 Oct, 2020
On 28 Oct, 2020
On 28 Oct, 2020
Posted 15 Jul, 2020
On 30 Sep, 2020
On 17 Sep, 2020
Received 17 Sep, 2020
Received 01 Sep, 2020
On 10 Aug, 2020
Invitations sent on 19 Jul, 2020
On 02 Jul, 2020
On 01 Jul, 2020
On 01 Jul, 2020
On 02 Dec, 2020
On 30 Nov, 2020
On 30 Nov, 2020
On 30 Nov, 2020
On 26 Nov, 2020
On 28 Oct, 2020
On 28 Oct, 2020
On 28 Oct, 2020
Posted 15 Jul, 2020
On 30 Sep, 2020
On 17 Sep, 2020
Received 17 Sep, 2020
Received 01 Sep, 2020
On 10 Aug, 2020
Invitations sent on 19 Jul, 2020
On 02 Jul, 2020
On 01 Jul, 2020
On 01 Jul, 2020
Background The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the impressions 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 new insight into integrating 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.
Loading...