Social Support and the Management of Uncertainty for People Living With HIV or AIDS

People with chronic and acute illnesses experience uncertainty about their prognoses, potential treatments, social relationships, and identity concerns. In a focus group study of people living with HIV or AIDS, we examined how social support may facilitate or interfere with the management of uncertainty about health, identity, and relationships. We found that support from others helps people with HIV or AIDS to manage uncertainty by (a) assisting with information seeking and avoiding, (b) providing instrumental support, (c) facilitating skill development, (d) giving acceptance or validation, (e) allowing ventilation, and (f) encouraging perspective shifts. Respondents also reported a variety of ways in which supportive others interfered with uncertainty management or in which seeking support imposed costs. Problems associated with social support and uncertainty management included a lack of coordination in uncertainty management assistance, the addition of relational uncertainty to illness uncertainty, and the burden of others' uncertainty management. Our study reveals strategies respondents used to manage costs and complications of receiving support, including developing an active or self-advocating orientation, reframing supportive interactions, withdrawing from nonproductive social situations, selectively allowing others to be support persons, and maintaining boundaries.     

Previvors’ Uncertainty Management Strategies for Hereditary Breast and Ovarian Cancer

Individuals with a genetic predisposition to develop hereditary breast and ovarian cancer (HBOC), but who have not been diagnosed with cancer, are referred to as previvors. Although genetic testing may reduce previvors’ worries about whether or not they have a high genetic cancer risk, testing positive produces negative emotions and long-term uncertainty—thus requiring the management of uncertainty. Existing research indicates family, friends, and social support networks are limited in their assistance for previvors’ uncertainty management. Therefore, this study examined how health care providers may assist previvors in uncertainty management by asking: What strategies do BRCA-positive previvors enact with their health care providers to help manage their uncertainty about HBOC? Purposive sampling was employed to recruit participants via online social media. The final sample consisted of 34 BRCA-positive women. Interviews revealed four uncertainty management strategies—seeking health care providers as informational sources, seeking health care providers as partners for decision making, seeking health care providers for supportive communication, and seeking referrals from health care providers for social support networks. Findings indicate that health care providers who are knowledgeable about BRCA, provide information, answer questions, check understanding, and provide additional resources assist previvors in managing their uncertainties by distinguishing options and fostering meaning.     

HIV / AIDS,STDs and the workplace

Even though the workplace is ideal for promoting HIV/STD (sexually transmitted disease) prevention to benefit workers and employers, many workplaces are not convinced that they should be involved in HIV/AIDS and STD education, prevention, and support. They do not realize that time and money spent on health programs save them money. Perhaps they do not feel obligated to protect the health of their employees. The AIDS epidemic adversely affects society and the economy at both the macro and micro level. AIDS tends to strike the productive age group, thereby seriously affecting the workplace. In many Sub-Saharan African countries, at least 20% of the urban workforce may be infected with HIV. Persons living with HIV include top management, skilled professionals, general hands, and farm laborers. HIV/AIDS costs for formal employment are assumed through reduced productivity; increased costs of occupational benefits and social security measures; loss of skilled labor, professionals, and managerial expertise as well as the experience among workers; increased costs of training and recruitment; and low morale from stigmatization, discrimination, and subsequent industrial relation problems. Needed are comprehensive HIV/AIDS and STD workplace programs that ensure the rights of persons with HIV and compassionate treatment of these persons. Trade union or other labor representatives, management, and appropriate government departments should work together and build on existing health legislation and policy to bring about effective negotiation and policy development concerning AIDS and employment. Training of peer educators, support services (counseling, STD referral and/or treatment), community action, management commitment, monitoring and evaluation, and supportive workplace conditions make for effective comprehensive workplace programs. Successful programs operate in fishing villages in Tanzania, tea plantations in India, the University of Papua New Guinea, and Ugandan army camps.     

Seropositivity,homosexuality and identity politics in Brazil

This paper focuses on the emergence of HIV seropositivity as a new identity, closely linked to male homosexuality, in Brazilian culture. Two distinct conceptions of seropositive identities that emerged in the Brazilian HIV/AIDS movement were examined. These two differing conceptions have taken shape as the basis for social action and activism around AIDS-related issues such as prevention, treatment and care. The first of these conceptions suggest that all people whose lives have been touched by HIV and AIDS can work together, based on principles of solidarity, in seeking to respond to the epidemic--whether or not they were themselves directly infected with HIV. The second, more specific conception suggests that those infected by HIV share a number of common experiences that distinguish them from others, while at the same time recognizing the specificity of homosexual men as opposed to heterosexual women or injecting drug users. Despite the differences, the two conceptions promote various common purposes such as the social integration and participation of HIV-positive persons in confronting AIDS, fighting for better life conditions, defending civil rights and breaking clandestineness and isolation. The differences appear mainly in the ways of organizing and political and social representation.     

Talking About,Knowing About HIV/AIDS in Canada: A Rural‐Urban Comparison

Purpose: To explore information exchange about HIV/AIDS among people living in rural and urban communities and to assess the value of social capital theory, as well as demographic factors, in predicting community members’ knowledge of HIV/AIDS and their likelihood of having talked about the disease. Method: A random‐digit dial telephone survey was conducted in 3 rural regions and matched urban communities in Canada during 2006 and 2007. A total of 1,919 respondents (response rate: 22.2%) answered questions about their knowledge of and attitudes toward HIV/AIDS, their social networks, whether they were personally acquainted with a person with HIV/AIDS (PHA), and whether they had ever talked to anyone about HIV/AIDS. Findings: Rurality was a significant predictor of HIV/AIDS knowledge and discussion. Even after controlling for factors such as age and level of education, respondents living in rural regions were less knowledgeable about HIV/AIDS and were less likely to have spoken with others about the disease. Social capital theory was not as strongly predictive as expected, although people with more bridging ties in their social networks were more likely to have discussed the disease, as were those who knew a PHA personally. Conclusion: Rural‐dwelling Canadians are less likely than their urban counterparts to be knowledgeable about HIV/AIDS or to talk about it, confirming reports by PHAs that rural communities tend to be silent about the disease. The findings support policy recommendations for HIV education programs in rural areas that encourage discussion about the disease and personal contact with PHAs.     

The intersecting cognitive and aging needs of HIV-positive older adults: Implications for social work practice

Cognitive impairment is a significant health concern for people aging with HIV/AIDS. Using a community-based participatory research (CBPR) framework, we surveyed (n = 108) and interviewed (n = 20) people living with HIV who were over age 50 about their cognitive concerns and recommendations for social work intervention development. Quantitative findings indicate that our sample was greatly engaged in their HIV care, yet participants had many cognitive concerns. Qualitative findings highlighted fear, shame, and uncertainty concerning HIV and aging alongside a need for increased social work support. This paper provides practical engagement strategies for social workers to support clients concerning HIV, aging, and cognition.     

Risk and protective factors for depression symptoms among children affected by HIV/AIDS in rural China: a structural equation modeling analysis

Previous research has revealed a negative impact of orphanhood and HIV-related stigma on the psychological well-being of children affected by HIV/AIDS. Little is known about psychological protective factors that can mitigate the effect of orphanhood and HIV-related stigma on psychological well-being. This research examines the relationships among several risk and protective factors for depression symptoms using structural equation modeling. Cross-sectional data were collected from 755 AIDS orphans and 466 children of HIV-positive parents aged 6-18 years in 2006-2007 in rural central China. Participants reported their experiences of traumatic events, perceived HIV-related stigma, perceived social support, future orientation, trusting relationships with current caregivers, and depression symptoms. We found that the experience of traumatic events and HIV-related stigma had a direct contributory effect on depression among children affected by HIV/AIDS. Trusting relationships together with future orientation and perceived social support mediated the effects of traumatic events and HIV-related stigma on depression. The final model demonstrated a dynamic interplay among future orientation, perceived social support and trusting relationships. Trusting relationships was the most proximate protective factor for depression. Perceived social support and future orientation were positively related to trusting relationships. We conclude that perceived social support, trusting relationships, and future orientation offer multiple levels of protection that can mitigate the effect of traumatic events and HIV-related stigma on depression. Trusting relationships with caregivers provides the most immediate source of psychological support. Future prevention interventions seeking to improve psychological well-being among children affected by HIV/AIDS should attend to these factors.     

Taking Control: The Efficacy and Durability of a Peer-Led Uncertainty Management Intervention for People Recently Diagnosed With HIV

HIV creates substantial uncertainty for people infected with the virus, which subsequently affects a host of psychosocial outcomes critical to successful management of the disease. This study assessed the efficacy and durability of a theoretically driven, one-on-one peer support intervention designed to facilitate uncertainty management and enhance psychosocial functioning for patients newly diagnosed with HIV. Using a pretest–posttest control group design, 98 participants received information and training in specific communication strategies (e.g., disclosing to friends and family, eliciting social support, talking to health care providers, using the Internet to gather information, and building social networks through AIDS service organizations). Participants in the experimental group attended six 1-hour sessions, whereas control participants received standard of care for 12 months (after which they received the intervention). Over time, participants in the intervention fared significantly better regarding (a) illness uncertainty, (b) depression, and (c) satisfaction with social support than did those in the control group. Given the utility and cost-effectiveness of this intervention and the uncertainty of a multitude of medical diagnoses and disease experiences, further work is indicated to determine how this program could be expanded to other illnesses and to address related factors, such as treatment adherence and clinical outcomes.     

HIV and identity: the experience of AIDS support group members who unexpectedly tested HIV negative in Uganda

Living with HIV, for many of those infected, has meant adjusting to life with a stigmatised condition and, until recently, the threat of looming death. We explore the adjustment of a group of long-term former clients of The AIDS Support Organisation (TASO) in Uganda who, when tested for HIV during the rollout of antiretroviral therapy in 2004, were found to be HIV negative. In-depth semi-structured interviews with 34 former TASO clients were conducted between 2005 and 2007. Their narratives reveal a great deal about the biographical disruption they have faced, and the biographical work that they have undertaken in both the personal and the social dimensions of their lives in order to manage their new-found HIV-uninfected status. After the negative test result, as they were no longer HIV-infected, they had to leave TASO and that support was sorely missed, as was the friendship of TASO members to whom they often felt reluctant to disclose their new status. The identity 'reversal' or change was often handled privately. Compared with their transition to an HIV-positive identity, they now lacked a social dimension to their identity transformation as they managed their new identity in the face of self- and public doubt.     

河南省艾滋病病毒感染者和艾滋病患者社会支持状况研究

目的了解艾滋病病毒感染者和艾滋病患者社会支持状况,探索改善该人群生存环境的途径。方法采用多阶段随机整群抽样方式抽取河南省艾滋病高发的8个县（区）1200人（HIV／AIDS组）进行问卷调查,内容包括社会交往、工作和婚姻受影响情况及受资助情况等。并抽取同生活区非感染者1200人（非HIV／AIDS组）进行对照分析。结果HIV／AIDS组中与亲戚很少来往的比例占47．6％,认为就业受影响很大的占66．1％,生活困难者得到过政府在生活上的帮助的占64．5％。在与亲戚的来往频度、与朋友来往频度、对就业的影响程度、本人或家庭其他人员婚姻受影响程度、受亲朋好友资助、受政府及社会救助、生活困难者是否得到过政府在生活上的帮助等方面,HIV／AIDS组和非HIV／AIDS组之间有统计学差异。结论艾滋病对艾滋病病毒感染者和艾滋病患者的社会交往、家庭和生活有较大影响,需要各个方面给予他们更多的支持。     

Facing the HIV / AIDS challenge: a study on household and community responses

In countries where the health care system cannot cope with the growing number of AIDS cases, the family and the community are significant sources of care and treatment. A qualitative study conducted in Mumbai, India, in 1994 sought to identify household- and community-based strategies for effective AIDS care. Enrolled were 26 individuals with HIV or AIDS, 4 couples (both partners infected), and 25 members of households with an HIV-infected person; in addition, 18 focus group discussions were held with low-income youth. None of the households contacted had abandoned a member with HIV. Household dynamics played a crucial role in the nature and quality of care received, however. The most supportive care was received by men, even when their female partner was also sick. In-laws often showed little compassion toward widowed, infected daughters-in-law. Individuals without open sores or lesions were better accepted by family members and perceived as less likely to transit the virus. Concerns about social stigmatization and isolation prevented many family members from turning to their community for support. Recommended, on the basis of these findings, are measures such as support programs to reduce the burden on female caregivers, subsidized and appropriate medical care, support groups for people with AIDS, HIV/AIDS community awareness programs, and increased involvement on the part of nongovernmental organizations in integrated programming.     

山东省外来妇女艾滋病防治定性研究

[目的]了解农村外来妇女艾滋病防治现状,为山东省艾滋病防治提供依据。[方法]运用定性研究中现场观察、深入访谈的方法了解相关人员对艾滋病的了解及当地外来妇女管理措施。[结果]访谈21人,访谈对象艾滋病知晓率低,对艾滋病感染者、病人及外来妇女等存在恐惧心理,当地艾滋病防治知识宣传较少。[结论]政府各部门相关人员缺乏艾滋病防治知识,艾滋病信息流通不畅,当地艾滋病防治处于被动防御阶段。     

HIV-Related Internet News and Discussion Groups as Professional and Social Support Tools

Summary

Information about HIV and AIDS is changing rapidly. HIV is a chronic disease that requires medical, social, and personal management. As of December 1996, more than 293,433 Americans are HIV-positive or have AIDS. HIV has crossed all socioeconomic, gender, and racial barriers, and continues to spread daily. The Internet holds hundreds of HIV-related sites, several of which are available as news and discussion groups. These sites may be used as sources of support or knowledge for people who are HIV-positive, affected by HIV, or for professionals that provide care.     

Factors leading to self-disclosure of a positive HIV diagnosis in Nairobi, Kenya: people living with HIV/AIDS in the Sub-Sahara

Understanding why, how, and to whom people living with HIV/AIDS disclose their diagnosis to others is a critical issue for HIV prevention and care efforts, but previous investigations of those issues in sub-Saharan Africa have been limited to one or two questions included in quantitative studies of social support or stigma. Instruments and findings on serostatus disclosure based on U.S. populations are likely to be at best only partially relevant because of Africa's primarily heterosexual transmission vectors and highly communalistic social structures. This qualitative analysis of two male and two female focus groups comprised of persons living with HIV/AIDS (PLWHAs) in Nairobi, Kenya, revealed several HIVstatus disclosure patterns that appear distinctive to Africa. These include (a) intermediaries as vehicles for disclosure to family, (b) indirectness as a communication strategy, and (c) church pastors as common targets for disclosure.     

艾滋病病毒感染者/艾滋病患者及其家属生活质量和社会支持的研究

目的了解皖北农村地区艾滋病病毒感染者/艾滋病患者(HIV/AIDS)及其家属的生活质量和社会支持现状,分析其相关的影响因素。方法通过典型抽样法采用一般情况问卷、感染史本底资料调查表、生活质量综合评定问卷(GQOLI-74)和社会支持评定量表(SSS)对331名HIV/AIDS及其家属148名进行调查。结果单因素分析显示,不同性别、不同乡镇、不同文化程度的HIV/AIDS及其家属的GQOLI-74总分差异有统计学意义(P<0.05);不同年龄、不同乡镇HIV/AIDS的SSS总分差异有统计学意义(P<0.05)。多元线性回归分析结果表明,高年龄、负性生活事件是影响HIV/ AIDS及其家属生活质量的不利因素,而高文化程度、好的邻里关系、烦恼诉说是影响HIV/AIDS及其家属生活质量的有利因素。结论诸多因素在不同层面影响皖北农村地区HIV/AIDS及其家属的生活质量和社会支持,农村现有的艾滋病社区关爱、社会支持工作还亟需加大力度,以家庭、邻里为依托的社区关爱模式有待建立。     

Demograghic and socio-economic determinants of community and hospital services costs for people with HIV/AIDS in London.

We examined the influence of demographic, social and economic background of people with HIV/AIDS in London on total community and hospital services costs. This was a retrospective study of community and hospital service use, needs and costs based on structured questionnaires administered by trained interviewers and costing information obtained from the service purchasers and providers, based on two Genito-urinary Medicine clinics in London: the Jefferiss Wing at St. Mary's Hospital and Patric Clements at the Central Middlesex Hospital, London, England. The subjects were 225 HIV infected patients (105 asymptomatic, 59 symptomatic non-AIDS and 61 AIDS). We found that over and above well established determinants of health care costs for HIV infected people such as disease stage and transmission category, social and economic factors such as employment and support of a living-in partner significantly reduced community services costs. Private health insurance had a similar effect, though only a small proportion of HIV people had such cover. The cost of community services for HIV infected non-European Union nationals, mainly of African origin, was one quarter that for the European Union nationals. Community services costs were highest for heterosexually infected women and lowest for heterosexually infected men after adjusting for other factors. Hospital services costs were significantly higher for HIV infected people lacking educational qualifications and employment. We conclude that access to community care for HIV infected non-EU nationals appears to be very poor as the cost of their community services was one quarter that for the EU nationals after adjusting for the effects of transmission category, disease stage, living with a partner, employment and having a private health insurance. Additional incentives for informal care for HIV infected people could be a cost-effective way to improve their community health service provisions.     

HIV/AIDS病人生活质量及社会支持调查

目的 了解皖北农村地区人类免疫缺陷病毒（HIV）感染者／艾滋病（AIDS）病人的生活质量和社会支持现状，分析其相关的影响因素。方法 通过典型抽样法采用一般情况问卷、感染史本底资料调查表、生活质量综合评定问卷（GQOLI-74）和社会支持评定量表（SSS）对85名HIV感染者／AIDS病人进行调查。采用单因素方差和多元线性回归方法对调查结果进行分析。结果 单因素分析显示，不同性别、不同文化程度的HIV感染者／AIDS病人GQOLI-74总分差异有统计学意义（P〈0．05）；不同乡镇的HIV感染者／AIDS病人SSS总分差异有统计学意义（P〈0．05）。多元线性回归分析结果表明，负性生活事件是影响HIV感染者／AIDS病人社会支持的不利因素。而好的邻里关系、烦恼诉说是影响HIV感染者／AIDS病人生活质量的有利因素。结论 诸多因素影响皖北农村地区HIV感染者／AIDS病人的生活质量和社会支持，农村应加强艾滋病社区关爱、社会支持工作，建立以家庭、邻里为依托的社区关爱模式。     

Communicatively Exploring Uncertainty Management of Parents of Children with Type 1 Diabetes

Parents of children with type 1 diabetes (T1D) face uncertainty about the illness. This uncertainty can have negative health consequences for parents and their children. However, little is known about the types of uncertainty associated with T1D diagnosis and subsequent treatment and how this uncertainty is managed. Using uncertainty management theory (UMT) as a framework and 29 in-depth interviews with parents of children with T1D, this study found that parents experienced medical, social, and financial forms of uncertainty. Most parents viewed uncertainty negatively and sought to reduce it by seeking information, joining support groups, and turning to technology. However, some parents preferred uncertainty to the certainty of knowing their child had T1D and, at least initially, chose to maintain uncertainty about the disease by avoiding information. This study also provides practical outcomes that health-care providers can use to help parents of children with T1D reduce and manage uncertainty.     

Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa

AIDS stigmas interfere with HIV prevention, diagnosis, and treatment and can become internalized by people living with HIV/AIDS. However, the effects of internalized AIDS stigmas have not been investigated in Africa, home to two-thirds of the more than 40 million people living with AIDS in the world. The current study examined the prevalence of discrimination experiences and internalized stigmas among 420 HIV-positive men and 643 HIV-positive women recruited from AIDS services in Cape Town, South Africa. The anonymous surveys found that 40% of persons with HIV/AIDS had experienced discrimination resulting from having HIV infection and one in five had lost a place to stay or a job because of their HIV status. More than one in three participants indicated feeling dirty, ashamed, or guilty because of their HIV status. A hierarchical regression model that included demographic characteristics, health and treatment status, social support, substance use, and internalized stigma significantly predicted cognitive-affective depression. Internalized stigma accounted for 4.8% of the variance in cognitive-affective depression scores over and above the other variables. These results indicate an urgent need for social reform to reduce AIDS stigmas and the design of interventions to assist people living with HIV/AIDS to adjust and adapt to the social conditions of AIDS in South Africa.     

Religious beliefs and HIV / AIDS / STD health promotion

Most people are raised in an environment that espouses a religion. Religions use different codes to structure people's lives. These codes contribute to the enforcement of societal discipline. Some religious laws bestow privileges to men (e.g., polygamy), which may make women more vulnerable to HIV/sexually transmitted diseases (STDs). These laws do not reflect the great changes in lifestyles. Communities still condemn people with HIV/AIDS as deserving the infection because they are immoral. Some community members, proclaiming religion as their justification, control the content of health education by limiting health education to sexual abstinence and fidelity. Should not religions also support the promotion of condom use? Everyone needs to learn about HIV/AIDS and to have access to preventive methods. Educators and counselors must avoid moralizing, but should instead offer people different options to protect themselves and others. Health educators should emphasize those religious codes and edicts with positive values relevant to the HIV/AIDS pandemic. No religious law calls for ostracizing individuals. Religious laws prohibit stigmatization, discrimination, prejudice, and ill-treatment. Religions tend to call for tolerance. They are founded on a universal belief of duty to support all suffering persons and to help them receive the best possible care and treatment. Thus, religion can help make HIV infection an acceptable social condition. On the grounds of edict or morality, religion cannot be a non-participant. In many cases, religion has restored respect, dignity, and understanding for persons with HIV/AIDS. Many religious groups provide care for such persons.