Recently released with HIV/AIDS: primary care treatment needs and experiences

The research objectives of this study are to describe the re-entry experiences of people recently released from jail who were living with HIV/AIDS, and to identify factors that influence their access to primary care and adherence to a treatment regimen. The research used a mixed-method, qualitative and quantitative research design. The findings indicate that the overall instability in the lives of many of the former inmates studied hampered their ability to attend to their HIV/AIDS-related health care needs. Most former inmates returned to the community with co-occurring problems related to housing and substance abuse. Complicating their access to health care were fragmented health care and correctional systems. The study highlights the need for coordination and collaboration between correctional facilities and community-based health care and human service providers that leads to a deliberative and planned transition from jail to service systems in the community.     

Experiences of African Immigrant Women Living with HIV in the U.K.: Implications for Health Professionals

In the U.K. immigrant women from Africa constitute an increasingly large proportion of newly diagnosed cases of HIV. A significant minority of these are refugees and asylum seekers. Very little is known about their experiences of living with HIV/AIDS, their psychosocial needs or their views of health care provision. This paper reports the results of a qualitative study that explored these issues by interviewing eight African women living with HIV in the British city of Nottingham. Women's ability to live positively with HIV was found to be strongly shaped by their migration history, their legal status, their experience of AIDS-related stigma and their Christian faith. Significantly, health services were represented as a safe social space, and were highly valued as a source of advice and support. The findings indicate that non-judgemental, personalised health care plays a key role in encouraging migrant African women to access psychosocial support and appropriate HIV services.     

Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil

This study describes and conceptualizes the experiences of stigma in a group of children living with HIV in S?o Paulo, Brazil, and evaluates the impact of access to highly active antiretroviral therapy (HAART) over the social course of AIDS and over the children's experiences of stigma. Through ethnographic research in S?o Paulo from 1999 to 2001, the life trajectories of 50 children ages 1-15 living with or affected by HIV were studied. Data were collected via participant observation and semi-structured informal interviews and analyzed using social theories on illness experience and social inequality. Our results demonstrate that AIDS-related stigma occurs within complex discrimination processes that change as children reach adolescence. We found that structural violence in the forms of poverty, racism, and inequalities in social status, gender, and age fuels children's experiences of stigma. We also describe how access to HAART changes the lived experience of children, reduces stigma, and brings new challenges in AIDS care such as adolescents' sexuality and treatment adherence. Based on these results, we propose structural violence as the framework to study stigma and argue that interventions to reduce stigma that solely target the perception and attitudes toward people living with HIV are limited. In contrast universal access to HAART in Brazil is a powerful intervention that reduces stigma, in that it transforms AIDS from a debilitating and fatal disease to a chronic and manageable one, belongs to a broader mechanism to assure citizens' rights, and reduces social inequalities in access to health care.     

Stitching the fabric back together: child fostering attitudes in the transition to a chronic HIV epidemic

There are an estimated 56 million orphans and vulnerable children across sub-Saharan Africa. Communities typically care for orphan children through informal caring arrangements – either within or outside of kinship networks. Within Kenya, an estimated 250,000 children live on the streets. There is less research related to fostering attitudes of this special population than orphans and vulnerable children generally. Important research over the past decade has illuminated multiple ways in which children are made more vulnerable because of HIV, including parental death and street-migration from HIV-affected households. As HIV transitions from a terminal illness to a chronic, manageable one, research is also required to establish how parents living with HIV can be an asset to children. In this study, we assess whether mothers living with HIV were very willing to foster biologically-related children, and street-involved children, how these fostering attitudes differed from mothers not living with HIV, and whether differences in fostering attitudes by reported HIV status were mediated by social support, family functioning and general self-rated health. Approximately 40% of mothers living with HIV were very willing to provide long-term foster care to biologically-related or street-involved children. This was less than the percentage of mothers not living with HIV, who were very willing to foster biologically-related children (61%) or street-involved children (58%). Significant portions of these differences were explained by social support, family functioning and general self-rated health. Multi-sectoral approaches are suggested by these findings in order to improve the child-fostering capacity of mothers living with HIV. Improving social support, family functioning and general self-rated health among HIV-infected mothers may not only provide protective benefits for the mothers and their children, but also expand the community’s capacity to care for orphan and vulnerable children.     

Psychosocial Differences Between Urban and Rural People Living With HIV/AIDS

Abstract: During the past decade, many investigations have examined the life circumstances of people living with HIV disease. Most of these studies, however, have focused on HIV-infected people in large metropolitan areas. This study compares the psychosocial profiles of rural and urban people living with HIV disease. Anonymous, self-administered surveys were completed by 276 people with HIV/AIDS in a Midwestern state. The assessment instrument measured respondents' quality of life, perceptions of loneliness, social support, experiences with AIDS-related discrimination, access to services, and illness-related coping strategies. Compared with their urban counterparts, rural people with HIV reported a significantly lower satisfaction with life, lower perceptions of social support from family members and friends, reduced access to medical and mental health care, elevated levels of loneliness, more community stigma, heightened personal fear that their HIV serostatus would be learned by others, and more maladaptive coping strategies. Programs that are designed to improve the life circumstances of people with HIV disease in rural areas—particularly those that facilitate access to adequate health care, increase perceptions of social support, and improve illness-related coping—are urgently needed.     

HIV-negative children’s experiences and opinions towards parental HIV disclosure: a qualitative study in China

In HIV/AIDS research, few studies to date have evaluated ways to improve parental HIV disclosure practices using feedback from HIV-negative children who have recently experienced this event. We conducted semi-structured in-depth interviews with 20 children (aged 6–15) who were partially to fully aware of their parents’ HIV status in rural Guangxi, China. Of the 20 children, eight children who were of older age (11.38 years in average) endorsed parental HIV disclosure, five discouraged it and seven expressed uncertainty. Children’s different experiences and attitudes towards disclosure were seen to be associated with their family dynamics (especially the parent–child relationship), social support and care, experiences of stigma and discrimination, psychosocial suffering, comprehension of the disease and the children’s age. Our study contributes to building a child-centered comprehensive understanding for Chinese parental HIV disclosure. It is imperative that counselors and community advocates assess and help parents achieve optimal readiness preceding disclosure of their illness to their HIV-negative children.     

“I thought we are safe”: Southern African lesbians' experiences of living with HIV

HIV-prevention and service programmes have long either ignored or overlooked lesbians. The experiences of lesbians with HIV have similarly been unrecognised and unreported. This erasure has contributed to the invisibility of lesbians in relation to HIV and related health risks. This community participatory study, based on in-depth interviews with 24 self-identifying African lesbians living with HIV in South Africa, Zimbabwe and Namibia, focuses on their personal experiences and circumstances. Women's experiences shed light and challenge popular notions around lesbian risk. In particular among this group are lesbians who self-report exclusive sexual relationships with women. For these women, experiences of living with HIV are challenging as they struggle to understand the possibility of female-to-female transmission. While battling with their own perceptions of invulnerability and accepting their HIV-positive status, they have to deal also with wide-ranging misconceptions about risk. The paper argues that within the context of HIV, lesbians cannot be regarded as a ‘no-risk’ group. Health services and health providers are encouraged to respond to the health needs of lesbians living with HIV.     

Economic empowerment and AIDS-related stigma in rural Kenya: a double-edged sword?

Economic empowerment, HIV risk and AIDS-related stigma appear intricately intertwined for women in Kenya. Their interaction must be understood in order to implement effective economic interventions that also decrease HIV risk and stigma. We conducted a qualitative study amongst women in a rural Kamba-speaking community of southeastern Kenya to pursue whether engagement in an economic empowerment initiative (a basket weaving cooperative) influences women's perspectives and experiences with HIV risk and AIDS-related stigma. We conducted seven women's focus groups: participants in the local basket-weaving cooperative comprised four focus groups and non-participants comprised the remaining three groups. The HIV status of the women was not known. Three dominant themes emerged from the focus groups: empowerment, pervasive vulnerability and unanticipated social paradoxes. Contradictions found in these themes suggest that economic empowerment can become a double-edged sword. Economic empowerment enhanced perceived individual, domestic and social community status. However, this enhancement was not protective of domestic violence and perceived HIV risk. Social perceptions may have paradoxically contributed barriers to HIV testing and treatment putting women at greater HIV risk. In conclusion, economic empowerment initiatives for women in developing countries in the context of the HIV epidemic should be coupled with peer mediated support and HIV-risk education.     

Integrating HIV / AIDS into First Nations health services

Some members of First Nations believe that HIV/AIDS does not affect Aboriginal populations. They instead believe that it is a White man's disease which affects only homosexuals. The mandate of the Manitoba Regional HIV/AIDS Steering Committee (MRASC) in Canada is to incorporate HIV/AIDS-related education and care into provincial health services for Aboriginal people, people living in Canada before Europeans arrived. The committee acts as an advisory group to the Assembly of Manitoba Chiefs Health Committee and the Medical Services Branch of Health Canada, making recommendations upon the development and coordination of an integrated program. One major focus of the program is to strengthen community-based resources so that service providers can provide prevention education in the framework of their ongoing activities. Most of the local health workers have received basic information and training in community education about HIV/AIDS-related issues. MRASC encourages First Nation people to talk to them and use available teaching through community workshops, classes, group discussions, lectures, and video programs. One-to-one counseling is also provided at individual clients' requests.     

Variations in pediatric HIV status disclosure between the orphanage and the community in Ethiopia

Past studies on pediatric HIV disclosure have not investigated the variations across childcare settings. This study explored pediatric HIV disclosure for children living in the community with their birthparents or relatives and those living in orphanages in Addis Ababa, Ethiopia, to highlight the variations in reasons, processes and outcomes of disclosure across childcare settings. Semi-structured interviews were conducted with children and their caregivers attending an HIV clinic in Addis Ababa, Ethiopia. Among children living in orphanages, the proportion with disclosure was significantly higher (p < 0.001) and age at disclosure was younger (p = 0.09). Although the proportions of children with unplanned disclosure were similar in orphanages and the community, there were notable differences between children’s experiences. Children living in the community often found out their status alone through exposure to antiretroviral therapy advertisements in the media, unbeknownst to their caregivers and healthcare providers and suffered silently without any support. Orphans, on the other hand, experienced unplanned disclosure after the death of their birthparents and subsequently received significant emotional support. Healthcare professionals need to consider these variations with childcare settings in disclosure processes. Practices in orphanages may be important models for developing adequate support system for caregivers and children in the community.     

Disclosing food allergy status in schools: health‐related stigma among school children in Ontario

In 2006, 3 years after the tragic death of 13‐year‐old Sabrina Shannon, the Province of Ontario (Canada) passed Sabrina's Law ushering in a new era of focus and concern for severe food allergic children at risk of anaphylaxis. Questions were raised at the time regarding the potential of doing more harm than good with the new legislation. This paper reports the experiences of health‐related stigma among food allergic children at risk of anaphylaxis who were required to disclose their health status under this new legislation. In 2008, in‐depth interviews were conducted with 20 children and youth and their parents in order to explore the experiences living with a severe food allergy. This particular study explores their experiences of felt and enacted stigma in the school setting as a result of the disclosure process. Interviews were tape recorded with permission and transcribed for subsequent thematic analysis using NVIVO, a qualitative analysis software package. Results indicate that participants were stigmatised as a result of protective school policies under the law, and that created tension between their physical safety and social well‐being. Sabrina's Law also led to a cultural shift in awareness of food allergies that resulted in some participants normalising their health status, offering promising directions for the future.     

The health-related quality of life of children and adolescents in home-based foster care

Objective To compare the health-related quality of life (HRQL) of 326 children and adolescents aged 6–17 years living in home-based foster care in metropolitan Adelaide, South Australia with the HRQL of a random sample of 3,582 children aged 6–17 years living in the community in Australia. Method In both groups, HRQL was assessed using the 50-item version of the Child Health Questionnaire (CHQ-PF50) completed by caregivers/parents, and the 87-item self-report version of the Child Health Questionnaire (CHQ-CF87) completed by 13–17 year olds. Results Young people in home-based foster care had significantly poorer HRQL in a wide range of different domains than those in the general community. Furthermore, among children in home-based foster care, those with mental health problems had significantly poorer HRQL in many domains than those without mental health problems. Demographic and placement characteristics of the children in home-based foster care were not significantly associated with differences in HRQL. Conclusion The findings highlight the importance of providing services and resources to improve the quality of life of children living in home-based foster care. All results of the analyses discussed in this paper are available upon request.     

Recently-Arrived Afghan Refugee Parents’ Perspectives About Parenting,Education and Pediatric Medical and Mental Health Care Services

Refugee children are at risk for mental/behavioral health problems but may not receive timely diagnosis or care. Parental experiences and perspectives about resources in the US may help guide interventions to improve mental/behavioral health care. In a community-academic partnership, we performed a qualitative study of recently-arrived Afghan refugee parents, using in-depth, semi-structured interviews to characterize experiences with parenting, education, and health care services. A four-person coding team identified, described, and refined themes. We interviewed 19 parents from ten families, with a median residence in the US of 24 months. Four themes emerged; parents described: (1) shifting focus as safety needs changed, (2) acculturation stress, (3) adjustment to an emerging US support system, and (4) appreciation of an engaged health care system. Health and educational providers’ appreciation for the process of acculturation among newly-arrived refugee Afghan families may facilitate screening, diagnostic, and intervention strategies to improve care.

     

Risk perception and vulnerability to STIs and HIV/AIDS among immigrant Latin-American women in Canada

This paper describes the migratory experiences of Latin American migrant women living in Canada, their perceptions of the risk of HIV, AIDS and other sexually transmitted infections (STIs) and barriers to accessing healthcare services. We conducted 25 in-depth interviews with Latin American migrant women living in Montreal, Canada. The majority of participants were permanent residents and refugee status claimants. Women’s experiences in Canada were characterised by uncertainty, deception and fraud, separation from their families and feelings of discrimination. Women’s risk perception of HIV/AIDS/STIs involved relations of gender inequalities of power. Women who did not perceive themselves to be at risk were those who had a stable partner who they felt they could trust. The majority of women reported difficulties in accessing sexual and reproductive health services. Women’s vulnerability to HIV/AIDS/STIs was determined by: experiences during their lifecourse; their migratory status, which was associated with sexual abuse, abuse at work, language barriers and lack of social support networks; and their ability to access health services. The provision of health services to this population must focus on sexual and reproductive health needs and should do so from a multicultural perspective that takes into account the changes associated with the migration process.     

Impact of peer group education on HIV prevention among women in Botswana

A peer group HIV prevention intervention based on social-cognitive learning theory, gender inequality, and the primary health care model for community-based health promotion was developed for more than 300 urban employed women in Botswana. All women volunteered to participate in the intervention. To control for self-selection, matched workplaces were assigned to the intervention group or to the delayed control group. Compared with women in the delayed control group, women in the intervention group had significantly higher postintervention levels of knowledge of HIV transmission, sexually transmitted diseases (STDs), and HIV prevention behaviors; positive condom attitudes and confidence in condom use; personal safer sex behaviors; and positive attitudes toward persons living with HIV/AIDS and community HIV/AIDS-related activities. The peer group leaders have sustained the program for more than 5 years after the end of research funding. Peer groups are a low-cost and sustainable intervention that can change HIV prevention knowledge, attitudes, and behaviors for ordinary urban employed women in sub-Saharan Africa.     

Disclosure of diagnosis and planning for the future in HIV-affected families in Europe

Information relating to disclosure of infection status in families affected by HIV and the existence of plans for the future social care of children with infected parents was collected as part of a larger survey on clinical and psychosocial service use of these families. Parents and alternative carers of HIV-affected children in follow-up in 10 paediatric centres from seven European countries were surveyed. A total of 182 questionnaires were returned: most (73%) were completed by parents, of whom 92% were HIV-infected. Of the 226 children cared for by the respondents, most (62%) were HIV-infected. Disclosure of both the child's and the parent's infection status was rare and found to be associated with child's age in both cases. Infected children living with their parents were less likely to know their diagnosis than those living in alternative care. Uninfected parents and carers were significantly more likely to want professional help with disclosing to an infected child than infected parents. Infected parents also face difficult decisions regarding the issue of who will care for their children when they are unable to. Half of the infected parents had made long-term plans for their children's future social care. European parents were more likely to have made such plans than those from elsewhere (mainly Africa) and parents with plans had known about their HIV infection for significantly longer than those without. Increasing numbers of vertically infected children are reaching adolescence as a result of improvements in the management of paediatric HIV infection. As both disclosure and planning for the future social care of HIV-affected children have been found to be strongly associated with child's age, the changing epidemiology of paediatric HIV highlights the need for more information on these issues in order to support families more effectively.     

某地既往有偿供血人群艾滋病歧视状况研究

目的 了解因既往有偿供血造成艾滋病流行地区艾滋病歧视现象及其产生原因和影响因素.方法 在安徽省某地利用目的抽样法从人类免疫缺陷病毒(HIV)感染者、家庭成员、村民及卫生工作者中各选择20名共80名作为调查对象.采用一对一深入访谈的方法,了解艾滋病歧视现象,分析产生原因与影响因素.结果 80名调查对象中,1名未完成调查,在完成调查的79名中,歧视的主要表现形式是扩大的歧视[81.0%(64/79)],嫌弃、回避及抛弁,看病时受到歧视[47.4%(28/59)],失去社会支持[33.3%(13/39)]等.艾滋病流行严重的村庄歧视相对较轻,艾滋病流行较轻的村庄歧视较严重.对艾滋病存在错误认识[57.5%(23/40)]、恐惧[32.5%(13/40)]及道德判断是歧视产生的主要原因.为了避免家人和孩子的正常生活受到影响,多数HIV感染者不愿暴露身份.结论 由于对艾滋病的错误认识等,导致歧视现象严重,亟须开展减少歧视相关工作.     

Social planning in Canada for families with HIV infection

Parents living with HIV and their children face complex medical and social problems. Whether the children are infected or not, they are all affected by the presence of HIV in a parent. The purpose of this article is to describe the problems of families with HIV and to propose social planning measures to respond to their psychosocial needs. It is based on a multicentre study that included in-depth interviews with 110 parents representing 91 Canadian families living with HIV. The study's findings and recommendations were reviewed by parents with HIV, social workers specializing in helping affected families, and a multidisciplinary consensus conference. This process identified six areas needing attention: stigma and disclosure; promoting and supporting family health; planning and transitions for the care of children; economic issues; cultural and immigrant issues; and education, advocacy, policy development, and research. Recommendations for action were made in each area.     

Understanding the Promise: Considering the Experiences of Women Living with HIV to Maximize Effectiveness of HIV Prevention Technologies

BackgroundThe United States' response to HIV was designed primarily to meet the needs of single men without dependent children and its prevention strategies focused primarily on individual behavior change with little attention to the social, cultural, and economic factors fueling HIV risk, especially among indigent and marginalized women. In 2012, the President's Advisory Council called for an updating of the National HIV/AIDS Strategy's Implementation Plan to “achieve specific, targeted and measurable goals for reducing HIV incidence and … improving health care access and health outcomes for women living with HIV.”Outcome MeasuresWomen living with HIV and those at greatest risk of HIV generally live side by side in the same communities and under the same conditions, separated in status only by a positive HIV test and its consequences. Thus, women openly living with HIV constitute an identifiable and accessible source of first-hand information regarding the barriers that keep women out of HIV prevention and care. Their insights, rooted in lived experience, can vitally inform the development of realistic HIV prevention goals and strategies for the successful integration of HIV prevention into the services already accessed by high-risk women. Their expertise, however, is largely untapped.ConclusionsIn this article, women living with HIV summarize the substantial deficits that exist with regard to woman-focused HIV prevention efforts nationally and the policy and practice changes needed to reduce the domestic impact of the HIV epidemic on women and girls. They also outline opportunities for movement in this direction as implementation of the National HIV/AIDS Strategy proceeds.     

The protective effects of community involvement for HIV risk behavior: a conceptual framework

This paper presents a conceptual framework of the protective effects of community involvement in HIV/AIDS-related groups and organizations for HIV sexual risk behavior among gay and bisexual men. The framework delineates hypotheses for future research, and provides a guide for prevention programs based on the active and direct involvement of participants, particularly communities of color. The framework (1) argues that community involvement moderates the association between three socio-structural risk factors (i.e. poverty, homophobia and racism) and sexual risk behavior; (2) posits that community involvement in HIV/AIDS reduces sexual risk behavior via its effects on four mediating factors (i.e. peer norms, self-efficacy, positive self-identity and alienation); (3) proposes five socio-cultural barriers to and facilitators of community involvement in HIV/AIDS (i.e. motives for participation, poverty, acculturation, stigma and perceived opportunities); and (4) addresses burnout as one potential negative consequence of community involvement in HIV/AIDS-related organizations and groups. The conceptual framework advances the understanding of HIV sexual risk behavior by integrating both its socio-structural risk and protective factors. It contributes to health education by specifying how interventions based on collective action (e.g. community involvement) for social change may be effective in generating healthy behaviors at individual and community levels.