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An HIV diagnosis may be associated with severe emotional and psychological distress, which can contribute to delays in care or poor self-management. Few studies have explored the emotional, psychological, and psychosocial impacts of an HIV diagnosis on women in low-resource settings. We conducted in-depth interviews with 30 women living with HIV in...
Citations
... For WLWH, pregnancy can be a time of increased psychological vulnerability [14]. In addition to the usual strains of new motherhood, WLWH also has to deal with stressors related to their health, the potential infectious statuses of their infants, and taking care of their new-born's particular needs, like providing prophylactic antiretroviral medication [15][16][17]. ...
... The diagnosis of HIV represented a traumatic turning point for the participants, triggering intense emotions that align with previous research [15,16]. Many women reacted with disbelief, refusing to accept their HIV-positive status [17,18]. This denial stemmed primarily from the women's self-perception as lowrisk individuals for HIV transmission. ...
Introduction: Pregnancy often intensifies psychological vulnerabilities in women living with HIV (WLHIV) due to increased stressors such as health concerns, infant infection risks, and the management of special neonatal needs like prophylactic antiretroviral care.
Methodology: The study was conducted in four HIV treatment centres with participant selection based on the following criteria: an Edinburgh Postnatal Depression Scale (EPDS) score of 13 or above, gestational age between 14 to 40 weeks, less than five years of antiretroviral therapy (ART) usage, and history of partner conflict. This research forms a more extensive study of stress and depression amongst pregnant and postpartum WLWH. In-depth interviews, ranging from 20 to 40 minutes, were conducted with 26 HIV-positive pregnant women in private rooms within selected antiretroviral clinics from October and December 2022.
Results and Discussion: The study discovered that the support received from healthcare providers concerning ART and Prevention of Mother-To-Child Transmission (PMTCT) practices alleviated women's fear of death and perinatal transmission which bolstered their involvement in HIV care and fostered the birth of children not infected with HIV. Women perceived monogamy as a protective measure against HIV contraction. Participants who reported having partners engaging in unsafe sexual practices expressed anger and blame. The observation of other women with similar experiences aided in coping mechanisms, reaffirming previous findings that knowing someone living with HIV helps to accept their status due to the comfort derived from shared experiences.
Conclusion: Healthcare providers attending to pregnant WLWH can alleviate psychological distress by reinforcing positive coping strategies. These include consistent psychological distress screenings in HIV clinics and relevant mental health evaluations with appropriate care referrals.
... In terms of HIV stigma in the DR, previous studies have found that WLHIV frequently face internalized stigma and depression [23]. A qualitative study exploring the impact of HIV diagnosis among WLHIV in the DR found that stigma and lack of disclosure hindered HIV selfmanagement and ART adherence, as some women avoided HIV clinics out of fear of being seen there and having her HIV status disclosed [24]. Another DR-based study with key stigmatized populations (female sex workers, men who have sex with men, and people of Haitian descent) found the highest levels of experienced stigma among female sex workers (FSWs), including verbal and physical assault and harassment-this dynamic was not present among MSM, many of whom had higher socioeconomic status than FSWs [25]. ...
... Interviewers took field notes during the interviews. The semi-structured interview guide was adapted using a previous guide developed by the researchers [24,39] and with input from local partners. Because the purpose of the interviews was to inform the development of the nutritional counseling and urban gardens intervention for people with adherence difficulties, the guide focused on topics related to nutritional knowledge and beliefs, food acquisition and dietary behaviors as well as economic and food security, access to health services, experiences with HIV, and ART adherence. ...
... Such experiences were central to the narratives of women in our study, who were more likely to be unemployed and report severe food insecurity compared to the men. Previous studies among WLHIV across diverse settings have described loss of employment as a form of rejection and discrimination [11], including in the DR [24,39]. Our findings confirm these and extend them to men living with HIV, albeit with the additional precarity and intensity for women, who, pre-diagnosis, were more likely to work in occupations that required contact with others, including at restaurants, doing domestic work, and providing childcare. ...
HIV-related stigma can affect health by compromising coping and social support. Gender differences in stigma experiences and social support are underexplored, particularly in the Caribbean. We conducted semi-structured interviews (N = 32) with patients at two HIV clinics in the Dominican Republic. Transcripts were coded using qualitative content analysis (deductive and inductive approaches) to identify themes regarding stigma experiences and social support, which were then compared across men and women participants to identify gender differences. While both men and women described experienced stigma, including verbal abuse, men's experience of stigma were subtler and women described outright rejection and instances of physical violence, including intimate partner violence. Both men and women described job discrimination, but women described severe disempowerment as well as permanent loss of income and/or employment whereas men described temporary changes in employment and /or decrease in income. Men and women described modifying behavior due to anticipated stigma, but only women discussed isolating themselves and discomfort taking HIV medication in front of others. Regarding internalized stigma, both men and women described shame, guilt, and depression over their HIV status, though these experiences were more common among women. Women's experiences prevented health care seeking and included suicidality, while men sometimes blamed women for their HIV status and expressed a desire to "move on" and "look ahead." Both men and women described receiving financial support from family and friends, community support from neighbors, governmental support, and support from other people living with HIV. Women most frequently discussed receiving support from family and friends and using religiosity to cope, whereas men referenced general family support and government benefits and were less forthcoming about personal relationships and social networks, oftentimes not disclosing HIV status to others. The social context of HIV-related stigma affects women and men differently with physical and mental health impacts and may require distinct mitigation approaches.
... Therefore, accounting for individual, interpersonal, and structural facilitators and barriers to disease co-management is needed when evaluating living with multiple chronic conditions. There are rich data on the experiences of managing HIV across several sub-populations in the Dominican Republic (e.g., urban versus rural, by occupation) [24][25][26][27], and there are increasing numbers of studies on T2D and cardiovascular diseases in the Dominican Republic [28][29][30]. However, to our knowledge, there are little data on the co-management of these conditions with HIV, particularly in a country with substantial investment in HIV care while balancing the rising burden of NCDs. ...
People living with HIV and a non-communicable disease (NCD) experience multi-level barriers when co-managing multiple conditions. We explored the factors affecting living with multiple chronic conditions in the Dominican Republic. We conducted 21 in-depth interviews from October 2019-February 2020 with Dominican adults who participated in a food security intervention and managed HIV and at least one chronic NCD. Using thematic analysis, we explored participant lived experiences co-managing multiple chronic conditions. All participants (mean age = 45.5 years) were linked to HIV care, but only three were linked to NCD-specific care. Individual-level barriers to managing NCDs included limited education and limited self-efficacy for self-management. Interpersonally, barriers included limited rapport building with an NCD-specific specialist. Structural barriers to managing NCDs were no health insurance, poor referral systems, and limited financial assistance. Health system adaptation requires equitably considering the needs of individuals managing multiple chronic conditions. Key factors to address include patient-provider relationships, improved referral systems, accessibility and availability of specialists, and financial assistance.
... Accounting for eight percent of all new infections worldwide in 2019 (UNAIDS, 2020), female sex workers (FSW) living with HIV face numerous challenges to becoming virally suppressed. First, depression and other mental health issues are associated with delayed engagement with care following diagnosis among FSW (Payán et al., 2019;Zulliger et al., 2018). FSW who have experienced violence from intimate partners or clients are also less likely to be linked to HIV care and more likely to miss antiretroviral therapy (ART) doses and interrupt ART, among other treatment outcomes (Mendoza et al., 2017;Wilson et al., 2016). ...
... Regardless of suppression status, nearly all participants experienced mental health challenges following their HIV diagnosis, which led many to delay treatment initiation or practice poor adherence. Numerous studies have documented that a positive HIV diagnosis may trigger psychological distress and depression among FSW and other populations (Bhadra et al., 2020;Payán et al., 2019;Perrett & Biley, 2013;Zulliger et al., 2018) and that depression may be associated with suboptimal ART adherence and lower CD4 counts (Weinstein & Li, 2016). In the DR, two qualitative studies among women living with HIV (WLH) discovered high levels of psychological distress and depression that were most severe after diagnosis, as we observed in our analysis (Payán et al., 2019;Rael, Carballo-Diéguez, et al., 2017). ...
... Numerous studies have documented that a positive HIV diagnosis may trigger psychological distress and depression among FSW and other populations (Bhadra et al., 2020;Payán et al., 2019;Perrett & Biley, 2013;Zulliger et al., 2018) and that depression may be associated with suboptimal ART adherence and lower CD4 counts (Weinstein & Li, 2016). In the DR, two qualitative studies among women living with HIV (WLH) discovered high levels of psychological distress and depression that were most severe after diagnosis, as we observed in our analysis (Payán et al., 2019;Rael, Carballo-Diéguez, et al., 2017). Similarly, evidence from the DR Zulliger et al., 2018) has highlighted that depression and other mental health challenges may compromise linkage to HIV care and ART adherence among FSW and WLH more generally. ...
Purpose
Despite suboptimal HIV outcomes among female sex workers (FSW), limited research has been conducted on factors that impact viral suppression among this population. Examining narratives of HIV management, we examined how experiences of diagnosis, treatment initiation, and ongoing care behaviours shaped viral suppression outcomes over time.
Methods
We conducted 20 in-depth interviews with FSW in Santo Domingo, Dominican Republic. Using narrative and thematic qualitative approaches, we developed analytic summaries and matrices to compare trajectories of managing HIV between suppressed and unsuppressed participants.
Results
Regardless of suppression status, participants described similar narratives of overcoming initial challenges to HIV management through personal resilience and social support. Unsuppressed participants identified more delays in initiating antiretroviral therapy and more lapses in adherence due to less active acceptance of their HIV status and more persistent experiences of economic hardship and HIV stigma.
Conclusions
We found that individual, interpersonal and structural factors, including stigma and economic precarity, differentiated trajectories towards viral suppression among FSW indicating the importance of multilevel interventions. Improved access to mental health services and social support could promote greater early acceptance of HIV status and progress towards viral suppression among FSW.
... Few studies focused on patients with one or more chronic conditions [24,[32][33][34][35][36], including diabetes [37][38][39] or hypertension [39]. There were a small number of studies that focused on gender, such as women living with HIV in extreme poverty [40][41][42], women living in rural areas [43], men [44], and men who have sex with men (MSM) [45,46]. Other studies focused on adolescents between 12 and 19 years old [47]; 14-19 years old [48]; those aged 13-18 years old [49] and their parents, caregivers, or health providers [50][51][52]; a systematic review on SM interventions for adolescents [25]; and a narrative review that examined the experiences of families who have parents living with HIV and their children or caregiver [53]. ...
... Of the [65] • HASMEP by Omisakin [56] Themes Related to SM Effective SM is conceptualized in the context of strong relationships with health care providers [48,67] and familial, peer, and community support and resources for emotional management, financial assistance, health, and non-health related tasks [27,32,35,48,50,[68][69][70][71]. Self-identity and viewing HIV as a long-term condition is also important [27,42,50,69], as it allows people to have greater self-efficacy for SM and medication adherence [50]. On the other hand, stigma is a commonly reported barrier to HIV SM in LMIC [32,37,39,40,42,50,72,73]. Further, poverty, food insecurity and meal support [32,38,43,60,69,71], and transportation barriers to attending clinic visits [39,39,43] act as barriers to SM. Lastly, some studies discussed how it is extremely challenging to implement and integrate comprehensive SM training and programs for PLWH in settings with limited formal health care system resource capacity. ...
... Self-identity and viewing HIV as a long-term condition is also important [27,42,50,69], as it allows people to have greater self-efficacy for SM and medication adherence [50]. On the other hand, stigma is a commonly reported barrier to HIV SM in LMIC [32,37,39,40,42,50,72,73]. Further, poverty, food insecurity and meal support [32,38,43,60,69,71], and transportation barriers to attending clinic visits [39,39,43] act as barriers to SM. Lastly, some studies discussed how it is extremely challenging to implement and integrate comprehensive SM training and programs for PLWH in settings with limited formal health care system resource capacity. ...
This scoping review assessed how the term ‘self-management’ (SM) is used in peer-reviewed literature describing HIV populations in low- and middle-income countries (LMIC). This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. OVID Medline, Embase, CAB Abstracts, and EBSCO CINAHL, Scopus, and Cochrane Library were searched up to September 2021 for articles with SM in titles, key words, or abstracts. Two team members independently screened the titles and abstracts, followed by the full-text. A data extraction tool assisted with collecting findings. A total of 103 articles were included. Since 2015, there has been a 74% increase in articles that use SM in relation to HIV in LMIC. Fifty-three articles used the term in the context of chronic disease management and described it as a complex process involving active participation from patients alongside providers. Many of the remaining 50 articles used SM as a strategy for handling one’s care by oneself, with or without the help of community or family members. This demonstrates the varied conceptualizations and uses of the term in LMIC, with implications for the management of HIV in these settings. Future research should examine the applicability of SM frameworks developed in high-income settings for LMIC.
... It is not surprising participants in our study suffered from emotional stress, in view that they received HIV diagnosis for no more than 1 month. It is difficult for them to accept the fact that they need to manage chronic disease with stigma (Payan et al., 2019). We found that emotional stress was associated with a worse evaluation of mental health and overall quality of life. ...
The overall negative correlation between HIV-related stress and health related quality of life (HRQoL) among people living with HIV (PLWH) has been established, but less is known about the associations between them from various dimensions. We aimed to give a deep understanding of the relationship between these two multidimensional variables. A cross-sectional study of 557 PLWH with diagnosis less than 1 month was conducted. The HIV/AIDS Stress Scale (SS-HIV) and the Medical Outcomes Study HIV Survey (MOS-HIV) were used to assess the HIV-related stress and HRQoL, respectively. Canonical correlation analysis was performed to analyze their correlation. The association between HIV-related stress and HRQoL among PLWH was mainly determined by the emotional stress and four HRQoL dimensions including health transition, heath stress, mental health function and the attitude towards general quality of life, which should be taken as important considerations in the management of HIV.
... Although HIV has transitioned from an acute fatal disease to a chronic manageable condition through the advances and widespread availability of ART [12][13][14], receiving an HIV diagnosis can be an emotionally challenging time [15,16]. The conceptualisation of HIV as a social and physical death persists in many societies [17]. ...
... This is particularly true in developing countries with a high burden of HIV and a high degree of perceived stigma [18,19]. There is indication from studies conducted in developed and developing countries that an HIV positive diagnosis received within the context of routine screening tests can be devastating, can bring about uncertainty, and may be associated with severe emotional distress [14,17,20]. Research suggests that, compared to women who test positive regardless of pregnancy, the response to testing positive during pregnancy is characterised by much more suffering and much stronger an emotional impact on the women [21]. ...
... Women often experience psychological distress from being pregnant and living with HIV at the same time, distress that takes a toll on their physical, mental, and social functioning [23]. Having to deal with pregnancy, a positive HIV diagnosis, fear of vertical transmission of HIV to the baby, initiating lifelong ART at once, stigma, and the need to disclose the HIV status to significant others make them vulnerable to extremely distressing emotions [14,15,24,25]. The psychological and psychosocial effect of an HIV diagnosis can contribute to poor self-management and delayed engagement in care [14]. ...
Literature has highlighted the unique period of vulnerability following an HIV diagnosis during pregnancy. Despite the high burden of HIV among pregnant women in South Africa, the experiences of women diagnosed with HIV during pregnancy have rarely been explored in isolation from those diagnosed at different times. This paper explored the experiences of women who were diagnosed with HIV when pregnant and assessed their emotional recovery beyond diagnosis. The study used a qualitative descriptive phenomenological approach to conduct interviews with women recruited from ART clinics in a health district in South Africa. Participants included 19 women sampled purposively. The interviews were transcribed verbatim and analysed following the thematic approach. Testing positive during pregnancy and being free of symptoms increased the shock, disbelief, and strong emotions exhibited. For the women, the diagnosis of HIV coincided with pregnancy and transformed pregnancy from excitement to anxiety. Although the transition from being HIV negative to becoming HIV positive and pregnant was overwhelming, with the passage of time, the women transitioned to feelings of acceptance. However, the process of acceptance was slow and varied, with some experiencing non-acceptance for extended periods. Non-acceptance of HIV diagnosis has serious adverse public health consequences for the individual. Integrating continuous HIV counselling and culturally appropriate psychosocial care into practice could foster acceptance for pregnant women with HIV diagnosis.
... About one-third had felt ashamed (31%) or guilty (30%) for living with HIV [20]. More recently, Payan et al. [21] conducted a qualitative study among Dominican women living with HIV, revealing their pronounced internalized stigma and fear of disclosure. In addition, a 2017 study commissioned by the Consejo Nacional del VIH y el Sida (National HIV and AIDS Council) documented healthcare providers' high levels of stigma towards PLHIV. ...
Objective(s): To describe stigma among seropositive MSM, female sex workers (FSWs),
and Haitian-descent individuals in the Dominican Republic, and to assess whether
stigma is associated with HIV treatment outcomes.
Design: Cross-sectional survey using Stigma Index 2.0.
Methods: People living with HIV (PLHIV) interviewed seropositive adult MSM,
FSWs, Haitian-descent persons, and other PLHIV who did not identify with these
communities about experiences of social exclusion, harassment, stigma in healthcare
settings, and internalized stigma. Bivariate analyses were conducted to compare
experiences between FSWs and other women; MSM and other men; and
Haitian-descent participants and non-Haitian PLHIV. Within each community,
separate multivariate logistic regression analyses were conducted to examine the
association between stigma experiences with viral suppression and with missed
antiretroviral doses.
Results: The 891 participants consisted of 154 MSM, 216 FSWs, 90 Haitian-descent
persons, and 447 who did not identify with any of these three communities. Compared
with other women, FSWs reported significantly higher levels of harassment due to their
HIV status, and those of Haitian descent reported significantly lower levels of social
exclusion compared with non-Haitian PLHIV. In adjusted analyses, MSM who experienced
more stigma in HIV-specific services had a significantly lower odds of knowing
they had undetectable viral load (adjusted odds ratio 0.37, P<0.05). Higher internalized
stigma scores were significantly associated with missing an antiretroviral treatment
dose among FSWs (adjusted odds ratio 1.26, P<0.05).
Conclusion: For FSWs and MSM, efforts to mitigate HIV-related stigma are necessary to
improve treatment adherence and viral suppression. For Haitian-descent PLHIV,
interventions must address not only their HIV-specific needs, but also the broader
social and legal barriers to care.
... Our participants resided in resource-poor communities, resulting in their dietary needs competing against other necessities such as housing and transportation. Qualitative studies suggest that PLHIV face challenges and various life stressors that may affect how they engage with dietary behaviours, such that competing needs take precedent over self-management behaviours (11,34) . A retrospective cohort study in La Romana, Dominican Republic, found that participants often had to prioritise necessities such as food and housing over their self-management behaviours, primarily adherence to ARV (35) . ...
Objective
The current study aimed to understand how moderate and severe food-insecure people living with HIV (PLHIV) in the Dominican Republic perceive a healthy diet and explore facilitators and barriers to engaging in healthy dietary behaviours as a means of HIV self-management.
Design
We conducted semi-structured interviews with PLHIV. We generated codes on food insecurity among PLHIV and used content analysis to organise codes for constant comparison between and within participants.
Setting
Two urban HIV clinics in the Dominican Republic.
Participants
Thirty-two PLHIV participated in the interviews.
Results
Factors that contributed to dietary behaviours include individual factors, such as knowledge of nutrition, views and attitudes on healthy dietary behaviours, beliefs about dietary needs for PLHIV and diet functionality. Interpersonal factors, including assistance from family and peers in providing food or funds, were deemed critical along with community and organisational factors, such as food assistance from HIV clinics, accessibility to a variety of food store types and the availability of diverse food options at food stores. Policy-level factors that influenced dietary behaviours were contingent on respondents’ participation in the labour market (i.e. whether they were employed) and consistent access to government assistance. Food insecurity influenced these factors through unpredictability and a lack of control.
Conclusions
PLHIV who experience food insecurity face various barriers to engaging in healthy dietary behaviours. Their diets are influenced at multiple levels of influence ranging from individual to structural, requiring multi-level interventions that can address these factors concurrently.
Background: The aim of this study was to gain a better understanding of the experiences of HIV positive Nigerian women living in Jos, North-Central Nigeria. The study applied a feminist lens to illuminate their experiences, with reference to biographical disruption. Nigeria is estimated to have the second largest number of people living with HIV in the world and women are disproportionately affected and infected by HIV/AIDS yet little is known about women’s experiences of living with HIV in Nigeria. Methodology: The research used a qualitative approach, informed by Interpretative Phenomenological Analysis (IPA), to generate in-depth data from semi-structured interviews with 11 HIV positive women and each participant was interviewed three to four times. The study applied a feminist lens to IPA and also pays attention to the broader contextual issues that participants face as part of their experiences of living with HIV. Findings: The analysis of the interview data identified three key themes: 1) Testing positive; 2) Living with HIV and 3) Disrupted Lives, ‘Repaired Biographies’. These three overarching themes encompassed subthemes which provided in-depth information of individual participants’ experiences. Conclusion: The findings of this study provides useful knowledge on Nigerian women living with HIV. It provides insights for treatment providers and policymakers in Nigeria and further afield by better informing their services to women, particularly through scaling up counselling services that are gender-specific, gender-sensitive and the provision of additional support and specially trained professionals. This study also highlights the value of the IPA approach and the use of biographical disruption as an approach to explore the impact of HIV on women’s lives. In addition to this, the study also highlights the need to pay attention to the wider contextual factors that impacts women living with HIV.
