The TRUST project aimed to explore living with HF in a multiperspective way through the integration of patients’, informal caregivers’, and HF specialists’ points of view. Firstly, the large number of narratives collected for this project can be considered an excellent result, highlighting the need of patients and their caregivers alike to be listened to. Indeed, participating in the project was rated as a positive experience by about 90% of patients and caregivers, and an even higher percentage of physicians perceived the task of writing as a way to reflect on their work.
Our project results show that HF strongly limits the life of both the patient and their caregiver. The narratives revealed two parallel lives: the life of the patients, which is physically limited, and that of the informal caregivers, which is affected by the need to look after a family member. A substantial proportion of patients adopted hobbies like playing cards or reading in place of strenuous activities such as sport. A strong emotional impact of HF emerged in terms of anxiety and fear of sudden death for both patients and caregivers. This anguish led to additional limitations to activities, and caregivers reported being not only responsible for co-ordinating the patient’s complex therapy plan and medical visits, but also having to be constantly in close proximity to the patient due to their deep fear of the patient experiencing sudden disease worsening. Furthermore, most caregivers were women, partners, and daughters, and their narratives exemplified the sacrifices they made. This strong emotional impact of HF on the patient and their family is in agreement with a previously published study, in which caregiving demands have been related to depression in the caregiver [27]. Both had to change their daily lives to cope with this new condition.
Almost all project participants wrote about the patient’s HF as an ‘illness’, according to our analysis using Kleinman’s theory [10]. These results are in contrast with those seen with other chronic diseases, for example, COPD [19], in which patients report ‘sickness narratives’. Therefore, although some people with HF had engaged in harmful behaviors (i.e., smoking, alcohol consumption, over-eating) that may have contributed to HF development, they did not feel judged for the onset of HF.
All the relationships were described with positivity and patients often expressed gratefulness to their doctors and for effective therapies, as confirmed by the high percentage of ‘restitution’ style of writing, according to Frank’s classification3[25]. Our results are in contrast with a recent Swedish study, which showed that caregivers felt unrecognized for their role in HF management [28], which suggests that caregivers may have difficulty in establishing a positive relationship with the physician. HF care is particularly challenging, not only for the elderly age of occurrence and frequent comorbidities, but also for the high number of different drugs per day patients have to consume. However, it is interesting to notice that the complexity of the treatment plan was considered more burdensome by the physicians than by either the patient or their caregiver. A recent study in patients with COPD demonstrated a link between the physician’s style of narrative writing about their relationship with their patient and the quality of care of their patients [29]. In that study, participating physicians wrote ‘illness-centered’ narratives. Our results were possibly biased towards a positive physician-patient relationship because the HF specialists participating in the TRUST project were already attentive to their relationship with patients.
Both caregivers and HF patients frequently avoided seeking the help of a HF specialist or other healthcare professionals until the patient’s condition had dramatically worsened, even if they had recognized unusual fatigue. Participants’ narratives included many elements of confusion, and lack of knowledge of HF emerged from their narratives, reflected by their deep feelings of fear and anguish, and those of their caregivers.
Moreover, even when the diagnosis was recent, almost 30% of the affected people and their families didn’t know their EF, suggesting that they probably didn’t understand the severity of their condition. Indeed, families’ poor health literacy and knowledge of HF have been recognized in previous studies [30, 31], especially in terms of understanding specific terminology. Nevertheless, participating patients and caregivers in our project had educational attainment levels higher than the Italian standard, so they had the necessary means to understand the disease course of HF. Interestingly, scarce knowledge of HF was shown even in the case of participants involved in the ‘HF Awareness Day’ initiative launched by the European Society of Cardiology HF Association [31], suggesting that their desire to be involved in such initiatives was not correlated with higher acceptance or awareness of the disease. What could be inferred from their participation in the HF Awareness Day initiative was their greater desire for effective care, and ultimately complete healing. The metaphor analysis revealed a large difference between patients and physicians in how they defined the disease (essentially an ‘internal’ understanding or knowledge of disease). While doctors expressed awareness of the inevitable progression of HF, using ‘malignant nature’ metaphors, patients were mainly focused on the ‘limitations’ they experienced because of the disease (Fig. 2). Furthermore, the high level of fear and anguish felt by patients and the caring attitude of physicians could have contributed to the lack of communication from doctors of the severe disease prognosis. This requires further study.
A limitation of this project is that all data were gathered by self-report. The large number of narratives collected and the integration of different points of view may help reduce to some extent the possible bias of using a qualitative methodology. Another possible source of bias was the high level of educational attainment among participating patients and caregivers.
3Using the concept ‘‘narrative type’’ Frank [25] described three types of illness narratives: Restitution, Chaos and Quest. The restitution narrative evolved through three stages, beginning with health, followed by sickness, and then by looking forward to a return to health in the future.