Among the 243 patients enrolled in the DIAMANTE study, 114 (47%) completed both V1 and V4 narratives. Eighty-five percent were male; patients have been living with HIV for 2.66 years ± 2,75 on average. Table 1 summarises participants’ sociodemographic and anamnestic data.
Table 1
– Sociodemographic and anamnestic data of participants
| Participants to narratives collection (N = 114) |
Sex | |
Men | 95 (85%) |
Nationality | |
Italian | 105 (92%) |
Other | 9 (8%) |
Age, years | 41,5 ± 11,5 (18–68) |
Civil status | |
Married or with a partner | 34 (30%) |
Single | 60 (54%) |
Divorced or widow | 18 (16%) |
With children | 33 (29%) |
Education level | |
Elementary or middle school diploma | 30 (26%) |
High school diploma | 48 (42%) |
Bachelor’s degree or higher education | 36 (32%) |
Work situation | |
Self-employed worker | 23 (20%) |
Employee | 66 (59%) |
Not working | 15 (13%) |
Student | 4 (4%) |
Retired | 4 (4%) |
Living with HIV, years | 2,66 ± 2,75 (0–19) |
Previous therapies (at study entry) | |
Having always been treated with DRV since the start of ARV treatment as naïve | 42 (37%) |
Not having been treated with DRV before starting of D/C/F/TAF | 16 (14%) |
Antiretroviral Naïve (any viral load) | 56 (49%) |
Way of infection | |
Blood contact | 1 (1%) |
Men who have sex with men (MSM) | 65 (57%) |
Heterosexual | 41 (36%) |
Intravenous drug use | 0 |
Unknown | 7 (6%) |
HIV RNA (copies/ml) at V4 | |
<50 | 102 (89%) |
>50 | 12 (11%) |
Data are presented as n (%) or mean ± SD (range). |
Patients chose their current reference centre based on territorial proximity (24%), high excellence reputation (26%), or recommended by other healthcare professionals (35%); 15% of patients did not specify the reason of their choice for the reference centre. Overall, patients appreciated the opportunity to share their experience in writing (86% at V1, 89% at V4); in particular, 44% defined this experience as satisfying and liberatory at V4.
Narratives were analysed to evaluate if patients accepted HIV-infection diagnosis while developing adaptive coping strategies. Separate analyses of V1 and V4 narratives showed no major differences in coping, which remained stable between 51% and 59%, with no statistically significant differences considering treatment groups. Therefore, findings from the narratives have been correlated with coping to understand elements promoting or inhibiting positive acceptance of HIV-positivity diagnosis.
The presentation of LWH-related findings will focus on those dimensions showing statistical significance (p value) with coping strategies, ordered as follows: (a) experiences analysed through narrative classifications and metaphors; (b) previous HIV knowledge before diagnosis and emotions experienced throughout the care pathway; (c) the decision to share or not HIV-positive status within relatives and friends; (d) HIV-positivity experience within work and activity sphere.
LWH through narrative classifications and metaphors
Ninety-two percent of V1 and 89% of V4 narratives highlighted illness-related issues and terminology (Table 2); at V4, a major focus emerged on issues linked to the clinical and technical disease aspects. The social dimension of sickness emerged in both V1 and V4 narratives (64% and 49%, respectively) and referred to the stigma still present within the society. At V4, patients mentioning sickness-related aspects (46%, p = 0.027) were those coping less.
Table 2
– Disease-, illness-, and sickness-related aspects: quotes from narratives
Disease | —Today, living with HIV is much easier. The change in therapy and the reduction of tablets has benefited psychologically. —I started to learn about the therapy and the experiences of those who had gone through it before me. The treatment I was given was new and therefore worried me. |
Illness | —Like any other person, or rather like a normal person, and even if I know that the disease is there, it does not mean that I cannot live it to the fullest as I have always done and be more careful in the things I do. —As if time were short. As if everything was vital. Inside myself, however, I try to hide my insecurities which make me put up concrete walls. I feel stronger than before. But I never talk to anyone about certain things, making me feel insecure. |
Sickness | —I do not talk about it. Only two people know about it. I don't think my friends would understand either. I am sure they would change their attitude. I would be afraid of being judged. —Because of the well-known mistrust of people with this disease, it is impossible to address this topic. |
HIV metaphors were clustered into three groups: (a) 41% recalled a malignant nature or a constant presence (—A black cloud overhead); (b) 38% referred to monstrous or stigma-related figures (—A stain on a perfect painting that will never be forgiven); (c) 21% indicated HIV as a mate, a journey, or a battle to be faced (—A second chance at life).
LWH from HIV knowledge before diagnosis to current emotions
58% of patients chose not to narrate their life before the HIV-positivity diagnosis, while 9% reported a problematic past, often made of loneliness and abuse. Conversely, 33% mentioned positive feelings related to their life before the diagnosis of HIV-positivity. At V4, patients who described a pleasant past showed most success in evolving from non-acceptance to coping (72% at V4 vs 54% at V1, p = 0.045); in contrast, patients who chose not to narrate their past (49%) were the least successful in coping.
Forty-six percent of patients showed previous poor HIV knowledge; only 19% reported knowing other PLWH and for 29% HIV still represented death. Forty-three percent of patients found out their HIV-positivity condition through purposely requested screening tests, and 15% through tests addressed to work-related screening or other special situation (e.g., pregnancy); however, 42% discovered the condition while facing HIV-related complications, e.g., fever, asthenia, or pneumonia. Analyses showed that the way PLWH found out HIV-positivity did not influence coping both at V1 (p = 0.6445) and V4 (p = 0.8508).
In narratives, patients reported the emotions they felt throughout the care pathway (Fig. 2); at HIV-positivity diagnosis, 82% felt fear, anger, and sorrow, followed by confusion (12%), while at V1 68% felt relief since clinicians reassured them, explaining the condition and therapies to control it. The very beginning of therapies corresponded to further relief (52%) and serenity (25%). At V4, patients recalled the emotions felt at V1, dwelling on relief (25%) and serenity (31%); however, participants experiencing confusion remained noticeable since they coincided with patients coping less (7%, p = 0.002).
At V1, 30% of patients reported they were keeping their HIV-positivity private with anyone; this percentage drops to 16% at V4. However, at V1 only 3% reported that they openly talked about their condition; 67% decided to talk about HIV-positivity status only with their own family or reliable friends. At V4, patients who openly talked (6%) about HIV-positivity coped more (100%, p = 0.012); conversely, PLWH who maintained the “secret” coped less with their condition (35%, p = 0.012).
Table 3
– Sharing the HIV-positive status with other: quotes from narratives
Maintaining privacy with all | —I decided not to say anything to my family members, or anyone, and go through this alone. |
Everyone knows | —I immediately wanted to tell everyone. Relatives and strangers, to be sincere from the beginning, except at work, where I said nothing for fear that it would compromise my activities. |
Only family and trustworthy friends | —My parents and best friends know about my condition, and they have never excluded me, which is very important. For the past two months, I have been in a relationship with someone who has peacefully accepted my condition, and we live our story in serenity. —I decided to call family members right away. My cousin was the first to know... So many tears we shed... |
Relationships with relatives and friends and coping with HIV-positivity
Seventy-four percent and 81% of patients respectively at V1 and V4 reported to feel supported and understood by their relatives (Fig. 3), developing more capability to cope with HIV-positive status (from 56% at V1 to 69% at V4, p = 0.045) – this percentage dropped to zero for patients facing difficulties in the familial context. As for relationships external to the family context, the percentage of patients who preferred to completely isolate themselves decreased from 29% at V1 to 6% at V4; nonetheless, at V4, 83% of patients kept their HIV-positive status secret with others. Positively, at V4, percentage of patients succeeding in developing supportive relationships increased from 4–11%, these patients were also more successful in coping with the condition (92% at V4, p = 0.001).
At V1, fear of HIV impact on sexual life represented a spontaneously emerged issue in 23 of 114 patients; at V4, 88% of these patients reported to be no longer afraid to infect sexual partners, and this helped them to accept their HIV-positive status (p = 0.023).
At V4, 72% of patients described their relationship with clinicians as excellent; conversely, 6% complained difficulties since the hospital organisation did not guarantee them to be visited by the same clinician; moreover, PLWH who expressed difficult relationship with clinicians coped less (17%, p = 0.040). Also, 26 of 114 patients spontaneously stated their pleasure in having participated in this study since they felt better followed and more informed on their condition.
Table 4
– The relationship with treating clinicians: quotes from narratives
Good or excellent relationship | —Definitely great. I can relate and ask many questions with answers that reassure me. —It is very good. It creates understanding and mutual trust, which is essential in a relationship. —Very good. He always informs me about my physical condition, and we also chat occasionally about more and less. He is an excellent doctor, attentive and thorough. —Satisfactory, and I believe it is fundamental to the empathy created between doctor and patient. This is worth at least 20% of the success; the pill does the rest. |
Challenging hospital organisation | —I do not have a specific idea about this. I have often changed doctors because of the hospital’s organisation (or disorganisation). —The doctors are competent and helpful even though the structure is upsetting due to internal reorganisation […]. All this has been passed on to the patients who have lost the famous one-to-one relationship that made the hospital unique and special, which was also why I chose other healthcare facilities. |
Participation in the study | —Within this clinical trial, I felt followed and cared for. —I was happy to be included in this study. This is because I felt even more followed. In short, it gave me the feeling or instead reinforced that I was being followed even more closely. —Knowing about the possibility of entering a “protocol” dynamic [...] I saw it as a “taking care of me” – not in a generalised sense, but as a free request to be able to follow side by side my treatment pathway with targeted drugs and treatments, which would then give the expected results so that, from my successful outcome, for example, a “good pathway-approach” could come out for other people in my same situation. This is certainly not a “fast track” but rather a moment of responsibility for me, of full availability so that the succession of treatment is a litmus test - no longer extraordinary but ordinary for others. So, armed, but also serene, in accepting this path, I let myself be “taken care of” – such seems the appropriate term [...] because it is taking care, having a more “targeted” index of attention towards me. And I perceived this individually from each person in charge of my care. |
HIV-positive status at workplace and in daily activities
At V4, 78% of patients who narrated their working situation (n = 87) highlighted to maintain the privacy on their condition even at workplace (Table 5). At V1, 18% of these 87 patients faced dismissal or demotion due to HIV-positivity or numerous HIV-related sick leaves; at V4, only 1% of these patients still reported these issues in their narratives. At V4, 7% of these patients stated to have shared their condition at the workplace and found comprehension by their colleagues. Moreover, comparing coping with the work situation reported within the questionnaire, employees showed to cope more than self-employed or not working patients.
Patients reported that they had no problems in performing activities, except for a very early period related to HIV complications (83% at V4); at V4, 10% of 86 patients referring on activities stated to have started doing even more activities than before. Between V1 and V4, 22 (19%) patients referred that they decided to improve their care for physical wellness after HIV-positivity diagnosis. However, 7% persisted in isolating themselves at V4 because of the psychological burden due to HIV-positivity and corresponded to patients who did not accept the condition and therefore could not cope (p = 0.013).
Table 5
– HIV-positivity experiences at workplace: quotes from narratives
Maintain secrecy | —I am always discreet and try to never mention it to anyone. —Nothing has changed, no one knows anything, and I continue to work the same way. |
Dismissal or demotion due to HIV-positivity | —I have had a little agreed-upon demotion – I do not do overnight on-call, and I do not have patient contact anymore. Still, I do take care of other essential things. So, everything is going well. —Unfortunately, I was fired for HIV, but it was the impetus to create something of my own and new. |
HIV-positivity sharing with colleagues | —They know about me, and after some time, nothing has changed. I don't see how it would be if I changed job. I feel lucky. |