3.1 Sociodemographic characteristics
Eighty-two narratives were collected from patients, 61 from caregivers, and 104 from HF specialists, for a total of 247 narratives (Appendix 2). Seventy-five percent of people with HF were male (75%) with a mean age of 68 years; most caregivers were patients’ wives (47%) or daughters (35%), respectively with a mean age of 60 and 46 years. Seventy-one percent of patients were pensioners and 37% of caregivers were employed. The sociodemographic characteristics of patients and caregivers were similar to those of the general Italian population, except for education attainment level, which was higher than the Italian average [25]. HF specialists’ parallel charts described patients with a similar sociodemographic profile to that of participating patients (Appendix 2).
3.2 Management of the condition
HF diagnosis in patients frequently occurred before 60 years of age; the mean disease duration was 10 years for patients and as described by caregivers, and 8 years according to physicians (Table 1). HF specialists reported other cardiovascular comorbidities affecting 63% of their patients. On average, families had to cover 37 km to reach the cardiology center, with follow-up every 6 months or more frequently (86%). At home, disease management included the administration, on average, of 8 different drugs per day across seven different times. Twenty-seven percent of patients showed class II HF according to New York Heart Association (NYHA) classification, while 26% reported a NYHA class III; however, physicians described the people with HF as suffering from more severe HF (44% class II, 34% class III). Although patients and caregivers know the patient's ejection fraction (EF) with exam withdrawal, respectively 16% and 17%, when asked, reported to not know the answer (Table 1).
Table 1
Disease management and clinical characteristics of patients with HF reported by patients, HF specialists, and caregivers
|
Patients
(N = 82)
|
Patients described by physicians (N = 104)
|
Patients described by caregivers (N = 61)
|
Age (mean ± SD), years
|
57 ± 3
|
57 ± 3
|
–
|
Disease duration (mean ± SD), years
|
10 ± 2
|
8 ± 1
|
10 ± 3
|
Recurrence of specialist visits, n (%)
|
(n = 73)
|
–
|
(n = 52)
|
≥ 1 in 6 months
|
28 (38)
|
–
|
25 (48)
|
1 per 6 months
|
35 (48)
|
–
|
23 (44)
|
1 per year
|
8 (11)
|
–
|
2 (4)
|
< 1 per year
|
3 (4)
|
–
|
1 (2)
|
Just in emergency cases
|
–
|
–
|
1 (2)
|
NYHA class, n (%)
|
(n = 73)
|
(n = 92)
|
(n = 53)
|
I
|
18 (25)
|
4 (4)
|
17 (32)
|
II
|
27 (37)
|
44 (48)
|
16 (30)
|
III
|
26 (36)
|
34 (37)
|
18 (34)
|
IV
|
2 (2)
|
10 (11)
|
2 (4)
|
Ejection fraction, n (%)
|
(n = 73)
|
(n = 102)
|
(n = 52)
|
> 40% (HF-pEF)
|
18 (25)
|
17 (17)
|
14 (27)
|
< 40% (HF-rEF)
|
39 (53)
|
85 (83)
|
21 (40)
|
I don’t know
|
16 (22)
|
–
|
17 (33)
|
HF heart failure, NYHA New York Heart Association, pEF preserved ejection fraction, rEF, reduced EF; SD standard deviation |
3.3 Analysis of narratives
3.3.1 Word frequency
The analysis of the 100 most frequently used words in narratives showed differences across the three considered perspectives. Patients frequently used words evoking previous life conditions and expressing fatigue, tiredness, and difficulty carrying out activities that before were considered normal, such as walking, working, and climbing stairs (e.g. «Before my illness I was always active, I’d walk at least two hours a day and I had a balanced diet. The only unhealthy thing I did was smoking»).
The word “fear” was used more commonly by caregivers than by patients, suggesting concern for QoL and life expectancy of the patients they cared for. Words related to the medical domain (e.g. “physicians”, “therapy”, “follow-up visit”) were also present.
Parallel charts highlighted the improvements obtained with treatments; thus, caregivers were represented as background figures or helpers in the event that patients should fail to comply with treatments. In most of their narratives, physicians showed trust at diagnosis but felt an urge to reassure their patients (e.g. «None of them should blame him/herselves, but they all had to undertake to follow the doctor’s instructions from diagnosis onwards»). Physicians proved to be aware of the importance of knowing how to actively and thoroughly listen to their patients, not only in the clinical domain but also in the speheres of emotions and everyday life planning.
3.3.2 HF social burden on patients and caregivers
All narratives were detailed on patients’ QoL (Table 2). HF consequences were so burdensome that only 26% of patients and 16% of caregivers stated that they had returned to their usual life (e.g. «I’ve had to reduce my working hours and ask my children and family for help. Today we spend much of our time at home. We don’t go anywhere»). Among the three groups of participants to the project, female caregivers mainly denounced their caregiving burden: in 55% of narratives, the duration of caregiving was reported to exceed 8 hours per day. Furthermore, 34% of caregivers considered impossible resuming activities previous to HF diagnosis as it would imply leaving patients alone.
Table 2
Patients’, physicians’ and caregivers’ perception of the impact of HF on daily activities
|
Patients
|
Informal Caregivers
|
Patients, as described by physicians
|
Patients, as described by caregivers
|
Impact on work, n (%)
|
(n = 33)
|
(n = 21)
|
|
|
No changes
|
6 (18)
|
5 (24)
|
–
|
–
|
Feeling disadvantaged at work
|
3 (9)
|
1 (5)
|
–
|
–
|
Limiting activities at work
|
14 (42)
|
9 (43)
|
–
|
–
|
Work interrupted
|
10 (30)
|
6 (29)
|
–
|
–
|
Spare-time activities before the diagnosis of HF, n (%)
|
(n = 70)
|
(n = 33)
|
(n = 79)
|
|
Social Life (i.e. Dinner with friends, theatre, etc.)
|
32 (46)
|
19 (58)
|
39 (49)
|
–
|
Sport
|
17 (24)
|
5 (15)
|
10 (13)
|
–
|
Work and little spare time
|
10 (14)
|
–
|
13 (16)
|
–
|
Taking care of the family
|
7 (10)
|
8 (24)
|
13 (16)
|
–
|
Gardening
|
4 (6)
|
1 (3)
|
4 (5)
|
–
|
Impact on daily activities today, n (%)
|
(n = 69)
|
(n = 32)
|
(n = 74)
|
(n = 44)
|
Social Life (i.e. friends, theatre, etc.)
|
18 (26)
|
5 (16)
|
34 (46)
|
5 (11)
|
Light physical activities (i.e. bike, walk, etc.)
|
14 (20)
|
–
|
14 (19)
|
|
Reading and watching TV
|
7 (10)
|
–
|
1 (1)
|
|
Taking care of the family
|
5 (7)
|
7 (22)
|
4 (5)
|
|
Art (i.e. painting, music, etc.)
|
3 (5)
|
–
|
5 (7)
|
|
Limited activities
|
15 (22)
|
–
|
10 (14)
|
18 (41)
|
Impossible to restore activities
|
6 (9)
|
9 (28)
|
6 (8)
|
16 (36)
|
Activities not restored due to fear
|
1 (1)
|
11 (34)
|
–
|
5 (11)
|
HF heart failure |
Considering Kleinman’s classification [10], narratives were mostly illness-centered (96% for patients, 100% for caregivers, 96% for physicians).
3.3.3 HF emotional impact
HF emotional impact on participants was also investigated through the Plutchik’s wheel of emotions [23]. At diagnosis, physicians’ prevalent emotions were trust and optimism (61%), and this positivity was still present (71%) during the writing of parallel charts (Fig. 1). On the other hand, patients reported fear (53%) and sadness (15%) as the most frequent emotions at diagnosis; this emotional impact was also confirmed by both caregivers and physicians.
Although in narratives patients reported current emotions such as optimism (31%) and trust (23%), 34% of them still felt fear, suggesting that they continue to feel afraid about the condition. Similarly, more than 80% of caregivers described having felt fear and anguish at diagnosis, and these emotions remained in a significant proportion (38%) at the time of writing.
Twenty-one percent of patients and 15% of caregivers described the future as frightening, and 17% and 23%, respectively, declared to avoid thinking about it; indeed, in narratives 41% of caregivers referred to the fear of the sudden death of their loved ones.
3.3.4 Perception of the condition
The metaphors used by participants to define HF (Fig. 2) were grouped into four main classes to facilitate interpretation: (a) malignant nature metaphors, relating to something frightful or unpredictable (e.g. «volcano eruption»); (b) limitation metaphors, in which the condition is perceived as disabling (e.g. «a very fast car without fuel»); (c) fight metaphors, where HF is seen as an enemy (e.g. «a trench war»); (d) threat metaphors, in which danger is the main feature (e.g. «the sword of Damocles»). Seventy-two percent of patients expressed limitation metaphors, 52% of caregivers evil nature metaphors (e.g., «slowness» of life), as did the 60% of physicians (e.g. «earthquake», «panther»); 13% of physicians also used fight metaphors (e.g., «trench war»).
3.3.5 Disease awareness
Sixty-nine percent of patients and 84% of caregivers stated that they had not initially recognized the first symptoms of the disease; 44% of physicians also reported this underestimation. Participants described no initial symptoms since – according to 39% of patients and 66% of caregivers – HF suddenly occurred during daily activities, although 25% of patients reported having noticed unusual fatigue before the diagnosis (Fig. 3). In fact, 55% of physicians reported first meeting the person with HF in an emergency situation. Furthermore, both patients’ and caregivers’ narratives showed a lack of awareness about the condition (85% of patients and 74% of caregivers) exemplified by their misuse of clinical terms and poor knowledge about what exactly HF is (Fig. 3).
3.3.6 Doctor-patient relationship
Relationships in the care pathway were clustered in three main ways: “easy” relations, when described as comfortable and trustworthy, “difficult”, when described as unsatisfactory, and “evolved”, when initially difficult but with a positive evolution.
Physicians established good relationships with patients and their families (Fig. 4); furthermore, from their perspective, 7% of doctor-patient relationships that were initially difficult improved over time. The highest proportion of difficult relationships early after diagnosis reported by patients were for those between patient and caregiver when the caregiver was a family member (48%). Patients often described these caregivers as being more afraid than necessary, and as annoying to the patient, who often desired more autonomy.
3.3.7 Perception of treatment
Therapies were described as effective and were often considered to have contributed to positive relationships between patients and caregivers. Generally, both patients and caregivers were satisfied with patient treatment (more than 80% of each considered them effective or very effective), while surgery (e.g. implantable devices, heart transplant), cited by 20% and 6% respectively, was considered the most critical treatment in terms of both risk and effect on outcomes. On the other hand, HF specialists perceived the treatment plan for patients as complex and burdensome in 21% of the cases, more often than patients and their caregivers.
3.3.8 Participation in NM project
Patients, physicians and caregivers reported their general appreciation for writing about their experience, and sharing their own narratives was perceived as a liberation and an opportunity to reflect (e.g. «I was pleased I was able to describe our experience in the hope that it may be useful; indeed, I wanted to thank you for giving me this opportunity»). Twelve percent of narratives stated that sharing the experience was difficult (e.g. «Remembering the single moments arouses a feeling of emotional suffering for a situation that is still unsolved and that presents an objective uncertainty for the future of all our family»).