HIV-related Experience Research Articles

Patient-reported outcomes and experiences of migrants enrolled in a multidisciplinary HIV clinic with rapid, free, and onsite treatment dispensation: the ‘ASAP’ study

BackgroundScholars recommend providing migrants living with HIV (MLWH) with free treatment, rapidly, once linked to care to optimize their HIV-related experiences and health outcomes. Quantitative evaluations of patient-reported measures for MLWH in such models are necessary to explore the viability of these recommendations.MethodsWithin a 96-week prospective cohort study at a multidisciplinary HIV clinic, participants received bictegravir/emtricitabine/tenofovir alafenamide (B/F/TAF) for free and rapidly following care linkage. Eight patient-reported measures were administered at weeks 4, 24, and 48: (1) mMOS-SS to measure perceived social support; (2) IA-RSS to measure internalized stigma; (3) K6 to measure psychological distress; (4) PROMIS to measure self-efficacy with treatment taking; (5) G-MISS to measure perceived compliance with clinicians’ treatment plans; (6) HIVTSQ to measure treatment satisfaction; (7) CARE to measure perceived provider empathy; and (8) PRPCC to measure perceived clinician cultural competence. Linear mixed modelling with bootstrapping was conducted to identify significant differences by sociodemographics and time.ResultsAcross weeks 4, 24, and 48, results suggest that MLWH enrolled in this study experienced moderate levels of social support; elevated levels of HIV-related stigma; moderate levels of distress; high self-efficacy with daily medication self-management; great compliance with clinicians’ treatment plans; high treatment satisfaction; high perceived empathy; and high perceived cultural competence. Experience of social support (i.e., mMOS-SS scores) differed significantly by birth region. Experience of HIV-related stigma (i.e., IA-RSS scores) differed significantly by birth region, age, and language. Experience of distress (i.e., K6 scores) differed significantly by sexual orientation. Experience of treatment satisfaction (i.e., HIVTSQ scores) differed significantly by birth region and age. No significant differences were identified by time for any measure.ConclusionOverall, participants expressed positive experiences around treatment and care, alongside comparably lower perceptions of social support, internalized stigma, and distress, potentially underscoring a need to embed targeted, well-funded, and accessible mental health support within HIV care models.

HIV-related challenges and women's self-response: A qualitative study with women living with HIV in Indonesia.

HIV infection is a major public health concern, with a range of negative impacts on People Living with HIV (PLHIV). A qualitative study in Yogyakarta, Indonesia, using in-depth interviews with 26 Women Living with HIV (WLHIV) was conducted to understand HIV risk factors and impact and their access to HIV care services. This paper describes the self-response of WLHIV towards negative HIV-related experiences facing them and adds to the existing literature which tends to focus on HIV impact only, as opposed to strategies that many WLHIV have used to empower and educate themselves and their family/community. Participants were recruited using the snowball sampling technique. Data analysis was guided by a qualitative data analysis framework. Our study highlighted that WLHIV experienced psychological challenges, stigma and discrimination. However, they demonstrated remarkable self-response and capacity in pursuing effective strategies and support to protect themselves, and educating themselves and others around them to rebuild trust and regain respect and acceptance. Our findings indicate that the needs of WLHIV should be addressed through policy and practice to help them cope with HIV-related psychological and social challenges effectively. Family and community members seem to play an important role in those negative challenges against WLHIV, thus there is also a need for HIV education programs for family and community members to enhance their HIV-health literacy and acceptance of PLHIV.

Women’s Illness Narratives: Storytelling as Art-Informed Inquiry

This article explores three narratives from South Asian Canadian immigrant women living with HIV, and how the project shifted from a conventional qualitative interview methodology toward an arts-informed narrative inquiry. Sharing my own story as an immigrant and refugee woman helped to establish trust and an emotive engagement with the women, making it easier for them to share their HIV-related experiences. Using a storytelling approach and Arthur W. Frank’s illness perspectives (1995),which include restitution (getting well), chaos (hopelessness), and quest (transcendence) as a framework, can deepen understandings of their lived experience as immigrant and refugee women living with HIV.

Reflections on HIV-Related Experiences of Two Global Funding Mechanisms Supporting Religious Health Providers

The sustained responses of bilateral and multilateral donors to the global HIV pandemic over the last 20 years offer an excellent case study for examining the complex issue of health financing and ...

Substance-related coping, HIV-related factors, and mental health among an HIV-positive sexual minority community sample

HIV-positive status poses a unique set of social stressors, especially among lesbian, gay, and bisexual (LGB) persons. Among these difficulties are the internalization of HIV-related stigma and poor mental health. Unfortunately, substance use as a coping mechanism is also common, dependent on other demographic factors, among HIV-positive and LGB samples. The present study integrates these bodies of literature by examining main and interactive effects of HIV-related experiences (i.e., disclosure of HIV-positive status, fear of disclosure, HIV-related victimization, and internalized HIV-related stigma) and substance-related coping with discrimination as they impact mental health (i.e., stress, anxiety, depressive symptoms, and suicide and self-injury proneness). Participants were 216 HIV-positive LGB community members from an urban community medical clinic. Prominent results included: (1) robust negative effects of internalized HIV-related stigma on all mental health indicators when controlling for other HIV-related experiences and (2) a significant interaction in which substance-related coping significantly increases suicide proneness, only for those who have disclosed HIV-positive status to family or friends. Results are discussed with respect to theoretical perspectives of internalized stigma, implications for clinical work with LGB persons of HIV-positive status, and future research.

The Scientist and the Artist: adaptive dissociation within the HIV-positive population

This paper reports on the findings of two independent qualitative studies which were conducted with HIV-positive cohort over a period of 2010–2012. Although the original studies used different qualitative designs (IPA and Grounded Theory), the authors have nevertheless sought to explore the combined utility of their findings by using a broad stance of phenomenological enquiry. The authors argue that evidence of a particular dissociative pattern in their accounts of an HIV-related experience is present in the contributors' narrative. Dissociation in this context occurred not in personality but between different or discrete mental faculties such as memory, emotions, perceptions and thought. It was suggested that it serves adaptive function and therefore could be utilised in clinical work when appropriate.

Examining church capacity to develop and disseminate a religiously appropriate HIV tool kit with African American churches.

Increasingly, African American churches have been called upon to assist in efforts to address HIV/AIDS in underserved communities. African Americans churches may be well-positioned to provide HIV education, screening, and support services, particularly if they are equipped with church-appropriate, easy-to-deliver HIV tools that can be implemented through the naturalistic church environment. To inform the development of a church-based HIV tool kit, we examined church capacity with African American church leaders (N = 124 participants; n = 58 churches represented by senior pastors). Nearly all participants (96%) wanted to learn more about HIV and how to discuss it with their parishioners. Regarding church capacity, most of their representative churches held three regular services each week, facilitated various inreach and community outreach ministries, and had paid staff and computers. Also, many of their churches facilitated HIV/AIDS education/prevention and adolescent sex education activities. Guided by church capacity findings, an ecological framework, and a CBPR approach, we describe the resulting church-based HIV Tool Kit that "fits" naturalistically within a multilevel church infrastructure, builds upon churches' HIV-related experience, and equips faith leaders to efficiently promote HIV services with the communities they serve.

Women, Poverty, and the Epidemic in China: Case Studies on Rural People Living with HIV/AIDS

Based on in-depth interviews with 110 People Living with HIV/AIDS (PLWHA), this qualitative study is a preliminary endeavor to delineate the socio-cultural scripts of rural PLWHA in China including their illness experience, everyday lives, and strategies of coping with stigma, poverty, and social barriers. This study documents the new wave of the “feminization of HIV/AIDS” in China. There is a gender difference of infection routes. Women were infected through heterosexual contact much more frequently than men. This study also discusses power struggles and gender asymmetries between rural couples living with HIV/AIDS, especially on the issues of “disclosure of the illness” and “condom negotiation.” Even when the disease has changed the family structure and women become the main financial supporters, gender inequality within a family is not changed in that women remain not the main decision makers and continue to suffer most from poverty. In conclusion, this article locates women's HIV-related experience within the social ecology of HIV/AIDS, and explores how gender inequality intersects with traditional customs and ethics, economic and political policy, medical system, and patriarchal values to heighten women's vulnerability to both the illness and poverty.

HIV/AIDS stigma in a South African community

HIV/AIDS-related stigma threatens to undermine interventions to prevent and treat HIV/AIDS. To address stigma in a South African community, a thorough understanding of the nature of stigma in the specific cultural context is needed. The goals of this research were to assess the level of stigmatising attitudes among members of a community, compare this to the level of stigma that is perceived to exist within the community and determine to what extent stigmatising attitudes are affected by socio-demographic characteristics, HIV-related experience and cultural beliefs. A questionnaire was completed by 1077 respondents in key areas in two communities in Tshwane, South Africa. The questionnaire included an assessment of HIV-related experience, HIV-knowledge, personal stigma and perceptions of stigma within the community. The findings indicate that the level of personal stigma was significantly lower than that perceived to be present in the community. Respondents who were more stigmatising were older, male, less educated and less knowledgeable about HIV. They were less likely to know someone with HIV and had more traditional cultural viewpoints. While socio-demographic and cultural factors are difficult to change, efforts aimed at increasing people's knowledge and experience of the epidemic occurring in their community could change the level of stigmatising attitudes within their community. Such efforts could have potential benefits in addressing the epidemic and providing greater support for those with HIV.

Guyanese Health Care Providers' HIV-Related Experiences, Attitudes, and Readiness to Provide Care

This article reports findings from a qualitative study of HIV-related knowledge and attitudes of Guyanese social service and health care providers. Social service and health care practitioners were asked to comment on beliefs and experiences regarding HIV and stigma, readiness to treat persons with HIV, and observations of cultural norms and prevailing attitudes. Two focus groups and six individual interviews led to insights about cultural and economic realities which support or obstruct education and treatment. Themes emerged in the areas of public attitudes and professional practices regarding HIV. The findings suggest that work is needed in Guyana to educate the public and prepare professionals for a burgeoning HIV pandemic. Educational, service, and political efforts should involve Guyanese people and systems at every Stage.

Negotiating Risk: Knowledge and Use of HIV Prevention by Persons With Serious Mental Illness Living in Supportive Housing

As a population, persons with serious mental illness (SMI) have an elevated risk for HIV infection. However, relatively little is known about how the risk of HIV has affected their lives, how persons with SMI evaluate their HIV risk, and what preventive measures they undertake. Furthermore, relatively little is known about community-based HIV prevention for persons with SMI as most interventions have been restricted to clinical settings. This report presents findings on the HIV-related experiences of persons with SMI living in supportive housing programs, one possible setting for implementing community-based HIV prevention with this population. The qualitative investigation interviewed 41 men and women living in five supportive housing programs. In-depth, qualitative interviews elicited discussion of research participants' (a) experiences with HIV, (b) knowledge about HIV and HIV prevention, (c) assessments of their own risk, (d) descriptions of how they apply their prevention knowledge, and (e) reports of barriers for HIV prevention. Research participants describe social networks that have substantial contact with persons affected by HIV. However, contrary to some expectations of persons with SMI, research participants report using HIV prevention knowledge in negotiating their risk of contracting HIV. The implications of these findings are discussed in terms of their relevance for implementing community-based HIV prevention for persons with SMI.

Initiating Highly Active Antiretroviral Therapy and Continuity of HIV Care: The Impact of Incarceration and Prison Release on Adherence and HIV Treatment Outcomes

To examine the effect of incarceration within 12 months of initiating highly active antiretroviral therapy (HAART) on non-adherence and HIV-1 RNA suppression. We compared the adherence and virological outcomes among participants in a population-based HIV/AIDS Drug Treatment Program in British Columbia, Canada, by history of incarceration in a provincial prison. Participants who were HIV-infected, naive to HAART and who were prescribed treatment between 1 July 1997 and 1 March 2002 were eligible for this study. Logistic regression was used to determine the factors associated with non-adherence and Cox proportional hazards modelling was used to determine the factors associated with HIV-1 RNA suppression adjusting for age, gender, history of drug use, baseline HIV-1 RNA, baseline CD4 cell count, type of antiretroviral regimen [two nucleosides + protease inhibitor (PI) vs two nucleosides + non-nucleoside reverse transcriptase inhibitor (NNRTI)], physician's HIV-related experience for each subject and adherence as measured by pharmacy refill compliance. There were 1746 subjects (101 incarcerated/1645 non-incarcerated) who started antiretroviral therapy between 1 July 1997 and 1 March 2002. Of those incarcerated, 50 initiated HAART while in prison and 27 subjects were released but returned to prison in the follow-up period. Subjects received antiretroviral therapy while incarcerated for a median number of 4 months [interquartile range (IQR): 2-10]. Multiple logistic regression results showed that a history of incarceration within 12 months of initiating HAART independently increased the odds of non-adherence [adjusted odds ratio (AOR): 2.40; 95% confidence interval (95% CI): 1.54-3.75]. A history of injected drug use was also associated with non-adherence (AOR: 1.49; 95% CI: 1.17-1.90). The following factors were negatively associated with non-adherence: older age (AOR: 0.81; 95% CI: 0.72-0.91), male sex (AOR: 0.50; 95% CI: 0.38-0.65) and higher physician HIV-related experience (AOR: 0.97; 95% CI: 0.96-0.98). In addition, a history of incarceration within 12 months of initiating HAART reduced the odds of achieving HIV-1 RNA suppression [adjusted hazards ratio (AHR): 0.68; 95% CI: 0.51-0.89]. Other factors negatively associated with viral suppression included a history of drug injection (AHR: 0.79; 95% CI: 0.69-0.91), two nucleosides + PI vs two nucleosides + NNRTI (AHR: 0.77; 95% CI: 0.69-0.87), higher baseline HIV-1 RNA (AHR: 0.66; 95% CI: 0.62-0.70). Higher adherence was positively associated with viral suppression (AHR: 1.38; 95% CI: 1.34-1.42). Among the 101 subjects who were incarcerated in the first year of starting HAART, the time spent in jail was positively associated with HIV-1 RNA suppression (HR: 1.06; 95% CI: 1.02-1.10). HIV-infected subjects with a history of incarceration within 12 months of initiating HAART have higher odds of non-adherence and, consequently, lower probability of achieving HIV-1 RNA suppression. The longer their sentence, however, the higher the probability of virological suppression. The British Columbian provincial prison system provided a structured setting for HAART but subjects are unable to continue this level of adherence upon release. Strategies to ensure continuation of HIV/AIDS care for HIV-infected individuals leaving the criminal justice system must be a public health priority.

Risk factors and HIV transmission to midlife and older women: knowledge, options, and the initiation of safer sexual practices.

Despite the increased impact of HIV/AIDS on women in the United States, the HIV-related experience of mature and older women has been largely overlooked by behavior scientists. Appropriate strategies for increasing awareness, assessing personal risk, and implementing safer sex behaviors among women in their 50s or older have not been developed. Relative to knowledge of personal risk and self-protective measures, older women have lower levels of knowledge about HIV/AIDS and the effectiveness of condoms than their younger counterparts. Although a significant portion of postmenopausal women remain sexually active, little is known about how mature women in long-term relationships can initiate self-protective behaviors if they come to recognize a risk or how those who meet new sexual partners can be motivated to use condoms. Investigations regarding safer sexual practices must be conducted in a way that addresses biologic events (e.g., menopause), life course changes, and cohort effects. Rather than trying to generalize findings from studies performed with younger women, it is necessary to integrate risk reduction strategies into models of sexual health and well-being for women across their life course.

Are medical students ready to provide HIV-prevention counseling?

To determine whether medical students were prepared to assess risk and counsel patients about prevention of HIV infection, and whether HIV-related experience produced better knowledge and counseling skills. In 1995, students at four North Carolina medical schools interviewed a standardized patient portraying a young woman concerned about HIV infection. The standardized patient recorded whether students asked risk-behavior questions and provided risk-reduction advice. A 21-item questionnaire assessed the students' knowledge of HIV testing and prevention. Students indicated whether they had had experience in educational settings related to HIV or STDs. 415 students completed both the patient interview and the questionnaire. Many failed to ask the patient about several HIV-risk behaviors. Although nearly all (98%) inquired about condom use, fewer than two thirds asked about the patient's history of STDs, number of sexual partners, or specific sexual practices. Most students advised the patient to use condoms. The average score on the knowledge test was 79%; 70% of students confused anonymous with confidential testing, more than half overestimated the risk of HIV transmission from a needle stick, and nearly one in ten did not know how to use a condom. Educational exposures did not produce significantly better risk assessment, counseling information, or knowledge scores. A majority of experienced medical students did not assess several important risk factors of a patient concerned about HIV infection, and many would have provided incorrect information related to HIV testing and prevention of infection. Patient contact in traditional clinical settings did not influence prevention knowledge or behavior. More innovative methods are needed to train students in HIV-infection prevention and counseling.

HIV/AIDS care giving physicians: their experience and practice patterns.

To identify associations between HIV-related experience and patterns of service provision, physicians across Canada were solicited by mail to register in a national network of HIV/AIDS care givers. Respondents provided data about: personal, demographic and practice characteristics; the number of HIV-positive patients ever seen; the nature of the HIV-positive client population; and services provided to HIV-positive patients. Univariate techniques provided a demographic and professional profile of participating physicians. Logistic regression was used to identify associations between level of HIV-related experience and the provision of patient services. The 566 registered physicians have provided care to 56,378 HIV-infected persons and represent every province and territory in Canada. Multivariate analysis revealed that highly experienced physicians were more likely to provide all 3 types of services considered, to practise in Montreal, Vancouver or Toronto, and to be medical specialists (all P < 0.001).