Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE – Scientific Reports

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.

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.

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).

Figure 2

PLWH emotions at different timepoint as described in the 114 narratives collected.

At V1, 30% of patients reported they were keeping their HIV-positivity private with anyone (Table 3); 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.

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 to 11%, these patients were also more successful in coping with the condition (92% at V4, p = 0.001).

Figure 3
figure 3

Relationship evolution from V1 to V4 as stated in the 114 PLWH narratives.

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 (Table 4); 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.

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.

Table 5 HIV-positivity experiences at workplace: quotes from narratives.

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).

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