Men's involvement in the South African family: engendering change in the AIDS era

The literature on the South African family and its response to the HIV/AIDS epidemic is rife with accounts of men that reflect a deficit model of male involvement. Few acknowledge the historical, economic and social complexities of male involvement in family life. As the South African family undergoes demographic, social and economic transformation there is a need to describe the range of roles played by all household members, including men. This paper examines data collected over two and a half years from a small sample of households affected by HIV/AIDS in rural KwaZulu Natal, South Africa. Non-participant observations were made during outreach visits by research staff to twenty households caring for at least one adult with disease symptoms indicative of TB or AIDS. We find that men are positively involved with their families and households in a wide range of ways. They care for patients and children, financially support immediate and extended family members and are present at home, thereby enabling women to work or support other households. As the qualitative data demonstrate, however, such activities are often not acknowledged. The dominant perception of both female respondents and research assistants continues to be that men are not caring for their families because they are irresponsible and profligate. We consider reasons why this disjuncture exists and how more men might be encouraged to fulfil such roles and activities as their families and households suffer the social and economic impacts of HIV/AIDS.     

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。     

African women act on AIDS

In Africa, normally women bear a disproportionate burden since they must perform their roles as individuals, mothers, and health care providers, but now they must also deal with their own HIV infection or that of family members. In 1988, the Society for Women and AIDS in Africa (SWAA) emerged because there was a need for women to address these concerns, specifically the gaps between men and women in information and education messages, interventions, AIDS policy and program development, and use in prevention initiatives. SWAA pursues prevention activities that consider the deeply rooted cultural beliefs and sensitivities of these women and their socioeconomic realities. It believes that once women have appropriate knowledge and are aware of their problem solving options, they will make decisions that bring about a change in actions which reduce their risk of HIV infection and risk behaviors of their partners and family members. Some of their activities involve motivating women to eliminate or modify practices that put them at risk of HIV infection, e.g., male promiscuity and wife sharing, change traditional norms that make women sexually submissive and nonassertive, and curb female prostitution. SWAA has 5 different regions and the country level is the operational base. Each of the 23 countries designs and executes its own programs, usually with women's health groups. It is branching out into women support networks, counseling, home and community care of AIDS patients, etc. It has been somewhat successful in reducing the misconception that prostitutes are the key transmitters of HIV. SWAA continues to work towards a positive working relationship with the basically male controlled institutions responsible for AIDS policy development.     

基于农村社区HIV/AIDS患者关怀支持活动模式的研究

目的探讨基于农村社区HIV/AIDS患者关怀支持活动模式。方法以农村社区为基础,由艾滋病防治专家、志愿者、社区医务人员、患者家属等组成关怀支持团队,通过开展培训、社区宣传教育、心理支持、患者交流、营养支持活动,为HIV/AIDS患者提供情感关爱和心理支持。结果本活动目标人群为150例HIV/AIDS患者,平均年龄为(44.61±10.78)岁,男性65人,女性85人。活动结束后抽取目标人群60例,采用《生存质量测定量表简表》测量其生存质量情况。活动前生存质量总分为(74.30±12.64)分,活动后总分为(84.95±16.31)分,差异有统计学意义(P<0.01)。结论建立以社区为基础的关怀支持体系,对充分发挥社区在艾滋病控制方面的参与功能、互助功能、整合功能及动员社会力量控制艾滋病传播方面有重要意义。     

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.     

艾滋病毒感染者/艾滋病患者与其家属艾滋病相关羞辱和歧视的研究

目的 了解某农村社区艾滋病毒感染者/艾滋病患者(HIV/AIDS)与其家属遭遇的羞辱和歧视,并分析造成相关羞辱和歧视的原因.方法 采用自制调查问卷,对某农村艾滋病流行区的117例HIV/AIDS及其相应的190名健康家属进行面对面问卷调查.结果 HIV/AIDS与其家属遭受到的羞辱和歧视可分为两类,即内在的羞辱和歧视及外在的羞辱和歧视;这两种羞辱和歧视在HIV/AIDS与其家属之间的差异有统计学意义(t=-12.540,P=0.000);且HIV/AIDS与其家属遭受的内在的羞辱和歧视要高于外在的羞辱和歧视.艾滋病内在的羞辱和歧视与研究对象的自我效能(OR=0.558,P=0.041)、家庭功能(OR=0.650,P=0.027)、是否感染HIV(OR=2.116,P=0.004)等因素有关.艾滋病外在的羞辱和歧视与研究对象的自我效能(OR=0.468,P=0.028)、家庭功能(OR=0.427,P=0.000)、是否感染HIV(OR=3.412,P=0.001)有关.结论 某农村社区HIV/AIDS与其家属在社会环境中均遭受到一定的内在、外在的羞辱和歧视,应采取有针对性的策略和措施,减少并消除这种羞辱和歧视.     

Care and secrecy: Being a mother of children living with HIV in Burkina Faso

Home care has become a central component of the response to the HIV/AIDS epidemic, displacing caregiving work onto women. While increasing interest has been paid to HIV/AIDS care with a focus on ailing adults and orphan foster care, the issue of caring for children living with HIV has received little attention in the social sciences. Based on ethnographic material gathered in Burkina Faso between November 2005 and December 2006, the aim of this paper was to gain understanding of women who mother and care for children living with HIV in resource-limited countries. The study involved participant observation in community-based organizations in Burkina Faso and semi-structured interviews with 20 women mothering HIV-positive children as well as 15 children infected with HIV, aged between 8 and 18 years. In daily care mothers face many great challenges, ranging from the routine of pill-taking to disturbing discussions with children asking questions about their health or treatment. The results also show how HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with the tension between secrecy surrounding the disease and the openness required in providing care and receiving social support. As mothers live in fear of disclosure, they have to develop concealment strategies around children's treatment and the nature of the disease. Conversely, some mothers may share their secret with kin members, close relatives or their children to gain social support. As HIV/AIDS care is shaped by secrecy, these findings shed light on mothers' isolation in child care within a context of changing patterns of family bonds and lack of formal psychosocial support addressing child-related issues. Finally, women's engagement in child care invites us to look beyond the essentialist approach of women's vulnerability conveyed by international discourse to characterise the situation of women facing the HIV/AIDS impact.     

吸毒严重地区开展艾滋病防治项目社区支持情况的定性研究

目的了解目前中国静脉吸毒艾滋病高流行社区中社区成员对在当地吸毒人群中开展艾滋病防治项目的态度与支持情况。方法在四川省选择开展艾滋病防治工作的社区,研究人员使用制定好的定性访谈提纲对不同类型的访谈对象进行个人深入访谈。访谈对象为吸毒者、吸毒者家属、社区居民与居委会工作者和相关行政部门工作者。结果本次定性研究共访谈27人,不同层次的社区成员对艾滋病问题持比较宽容的态度,并愿意开展长期的HIV/AIDS防治工作,虽然对吸毒者存在一些矛盾的心理,但绝大多数人都支持在社区内开展艾滋病防治项目,一方面希望帮助更多吸毒者戒毒,另一方面希望预防与控制艾滋病等疾病的传播。结论社区内已经形成了较好的开展艾滋病防治项目的支持环境,建议通过建立社区顾问委员会(CAB),采取多种形式加强社区各界成员的合作并使之成为研究者和研究对象之间重要的桥梁。     

蒲江县农村外出务工人员及家属艾滋病防治知、信、行调查

目的了解蒲江县农村外出务工人员及家属艾滋病防治知、信、行情况,为今后防治工作提供依据。方法采用随机抽样方法抽查2个镇,对常住户口在该镇,近1年跨县外出务工3个月及以上的人员及家属且年龄在1549岁者利用自制问卷进行面对面调查,了解其对艾滋病防治知、信、行情况。结果本次共调查外出务工人员341人,以初中、小学为主,家属505人,以小学为主。对艾滋病知识的知晓率二者分别为75%和56%,对蚊虫叮咬是否会传染H IV的正确回答率分别为39.30%和33.27%,表示会与感染H IV的亲朋好友继续来往的回答二者分别为52.20%和33.27%,未做过艾滋病自愿咨询检测比率二者分别为90%和95%。二者对安全套的使用率均较低。结论外出务工人员及家属对艾滋病知识了解不足,信念需要纠正,行为需要提高。今后工作中要根据外出务工人员、家属的不同情况加强艾滋病防治知识宣传,提高安全套使用率、自愿咨询检测率。     

Household and community HIV/AIDS status and child malnutrition in sub-Saharan Africa: evidence from the demographic and health surveys

This paper examines the extent to which under five children in households or communities adversely affected by HIV/AIDS are disadvantaged, in comparison with other children in less affected households/communities. The study is based on secondary analysis of the Demographic and Health Survey (DHS) data collected during 2003-2008 from 18 countries in sub-Saharan Africa, where the DHS has included HIV test data for adults of reproductive age. We apply multilevel logistic regression models that take into account the effect of contextual community/country level HIV/AIDS factors on child malnutrition. The outcome variable of interest is child undernutrition: stunting, wasting and underweight. The results suggest that across countries in sub-Saharan Africa, children whose mothers are infected with HIV are significantly more likely to be stunted, wasted or underweight compared to their counterparts of similar demographic and socio-economic background whose mothers are not infected. However, the nutritional status of children who are paternal orphans or in households where other adults are HIV positive are not significantly different from non-orphaned children or those in households where no adult is infected with HIV. Other adult household members being HIV positive is, however, associated with higher malnutrition among younger children below the age of one. Further analysis reveals that the effect of mothers' HIV status on child nutritional status (underweight) varies significantly across communities within countries, the effect being lower in communities with generally higher levels of malnutrition. Overall, the findings have important implications for policy and programme efforts towards improved integration of HIV/AIDS and child nutrition services in affected communities and other sub-groups of the population made vulnerable by HIV/AIDS. In particular, children whose mothers are infected with HIV deserve special attention.     

Latino recruitment and retention strategies: community-based HIV prevention

Latinos are disproportionately affected by HIV/AIDS. The need for community-based AIDS prevention programs that are culture specific is well recognized. Lay Health Advisor (LHA) interventions are a culturally appropriate way to provide information about HIV/AIDS to community members. LHA programs use natural helpers in the community to disseminate information through their social networks. Natural helpers are community members who informally provide support to their neighbors and to whom others naturally turn for advice. This paper reports the recruitment and retention experiences of a Lay Health Advisor Program: Protegiendo Nuestra Familia (Protecting Our Family) for prevention of HIV/AIDS among Latinos in North Carolina.     

Latino Immigrants: Latino Recruitment and Retention Strategies: Community-Based HIV Prevention

Latinos are disproportionately affected by HIV/AIDS. The need for community-based AIDS prevention programs that are culture specific is well recognized. Lay Health Advisor (LHA) interventions are a culturally appropriate way to provide information about HIV/AIDS to community members. LHA programs use natural helpers in the community to disseminate information through their social networks. Natural helpers are community members who informally provide support to their neighbors and to whom others naturally turn for advice. This paper reports the recruitment and retention experiences of a Lay Health Advisor Program: Protegiendo Nuestra Familia (Protecting Our Family) for prevention of HIV/AIDS among Latinos in North Carolina.     

Female-headed households contending with AIDS-related hardship in rural South Africa

Mainstream research and the popular media often equate female-headship with household vulnerability, crisis, and disorganization. Epidemic levels of HIV/AIDS in some parts of sub-Saharan Africa compound this portrait of hopelessness. In South Africa, the impact of HIV/AIDS on households depends on race, class, and place. As female-headed households increase in number, we need to better understand how female-heads in poor rural areas contend with AIDS related challenges. We analyze qualitative interviews with 16 female heads and the members of their households in a rural community to examine the response to AIDS-related illness, death, or caring for orphaned children. Our analysis examines female-heads' financial and social resources and how these resources buffer against hardship in households affected by AIDS. We find considerable heterogeneity among rural female-headed households and their access to resources to combat AIDS-related hardship. Our findings have important policy implications both in terms of identifying individual and household vulnerabilities as well as leveraging the potential for resilience for female-heads in rural South African communities.     

Women and AIDS caregiving: women's work?

In this ethnographic study, I examine personal, kinship, and social obligations and the role of women in the traditional Thai family. Under what circumstances do women take on the responsibility to care or not care, and how do they cope with the disease and care when they are also infected? Fifteen women who were afflicted or affected by HIV/AIDS participated in in-depth interviews and participant observations. Analysis employed mainly qualitative methods following Spradley. I show that women who are responsible for caring for both themselves and others, including members of their immediate families or extended family members, face a double jeopardy by virtue of their inferior role and status. When HIV-infected women experience illness, sometimes they feel split; they are incapable of functioning normally, yet they are obligated to do "What they've got to do." Women as carers feel that they have to care because they want to free someone else from suffering despite the fact that they are also suffering. Women roles as family carers seem to be both psychologically and socially constructed. AIDS care is not just a labour of love, but also is done in the spirit of work following Buddhist beliefs of karma and metta. In conclusion, traditional, persistent gender imbalances and inequalities influence women's sexuality, vulnerability, responsibility, and caregiving. When women become infected with HIV and sick with AIDS, their quality of life drops because of the physical, psychological, cultural value, and economic burdens of care they face. AIDS then necessitates rather than prevents women from fulfilling their multiple roles. Consequently, there is a need for greater support especially among Thai women who are afflicted and affected with AIDS.     

Revealing the full extent of households' experiences of HIV and AIDS in rural South Africa

Households experience HIV and AIDS in a complex and changing set of environments. These include health and welfare treatment and support services, HIV-related stigma and discrimination, and individual and household social and economic circumstances. This paper documents the experiences of 12 households directly affected by HIV and AIDS in rural KwaZulu Natal, South Africa, between 2002 and 2004. The households were observed during repeated visits over a period of more than a year by ethnographically trained researchers. Field notes were analysed using thematic content analysis to identify themes and sub-themes. This paper focuses on three dimensions of household experience of HIV and AIDS that have received little attention in HIV and AIDS impact studies. First, that experience of HIV and AIDS is cumulative. In an area where population surveys report HIV prevalence rates of over 20% in adults, many households face multiple episodes of HIV-related illness and AIDS deaths. We describe how these challenges affect perceptions and responses within and outside households. Second, while over 50% of all adult deaths are due to AIDS, households continue to face other causes of illness and death. We show how these other causes compound the impact of AIDS, particularly where the deceased was the main income earner and/or primary carer for young children. Third, HIV-related illness and AIDS deaths of household members are only part of the households' cumulative experience of HIV and AIDS. Illness and death of non-household members, for example, former partners who are parents of children within the households or relatives who provide financial support, also impact negatively on households. We also discuss how measuring multiple episodes of illness and deaths can be recorded in household surveys in order to improve quantitative assessments of the impact of HIV and AIDS.     

'I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China

Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well‐being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China. Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In‐depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS. Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class). Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community‐based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.     

AIDS: an update

In sub-Saharan Africa, where the acquired immunodeficiency syndrome (AIDS) epidemic threatens to undermine the social and economic structure of society, there has been insufficient attention to health care demand, supply, and quality issues. Most of those currently infected with human immunodeficiency virus (HIV) will register their demand for increased health services within the next six years. A study of medical insurance claims in Zimbabwe indicated that the claims of HIV-infected persons in the last 7-15 months of their lives were 700% higher than the average claim for the same age group. Absenteeism by HIV-infected health care workers is affecting the quality of care in hospitals, and countries that provide sickness benefits for public sector workers face the double drain of financing these benefits and paying for replacement staff. Emerging evidence suggests that HIV screening and counseling is not an effective intervention in this culture. Pregnant Kenyan women screened for HIV tended not to want the results, failed to inform their partner of a positive result, or were subjected to violence and abandonment when they did inform their husbands. Most effective, in this region, have been programs aimed at improving the diagnosis and treatment of sexually transmitted diseases. Other recommendations include decentralization of care to district health systems where costs are lower, increased support for home-based care, AIDS education for traditional healers, and informational campaigns to counter discrimination against HIV-infected community members.     

云南某城市社区艾滋病感染者家庭经济状况调查

目的通过凋查城市社区HIV感染者家庭和非HIV感染者家庭经济状况和医疗负担等,了解艾滋病对城市社区家庭造成的社会经济影响。方法随机抽取20个城市社区,根据当地疾病预防控制中心掌握的资料,抽取了100户HIV／AIDS家庭,再按2：1：1的比例在社区中选取吸毒非感染者家庭和一般家庭,采用自行设计的问卷,在经过专家论证和现场预试验后,用于正式入户调查．主要涉及3类家庭经济收入来源及金额、支出类别及金额、家庭成员健康状况及医疗负担等。结果调查发现HIV／AIDS家庭除经商和其他收入（包括低保、亲属和社会救济）较高外,固定工资、打工及副业收入均小于另外两类家庭。而支出方面HIV／AIDS家庭除教育支出较低外,其他与另外两类家庭差异无统计学意义。HIV感染者家庭的医疗负担要高于对照组家庭。结论艾滋病对城市家庭造成的影响在于就业率降低,家庭收入减少,医疗负担增加,消费能力下降,同时由于城市中社会支持网的缺乏,HIV感染者和艾滋病病人家庭难以在社会上立足．导致家庭社会功能丧失和家庭经济贫困。     

Household and community responses to HIV and AIDS in developing countries

Household and community responses to HIV and AIDS are shaped by the contexts in which women, men and children live and socialize. In this study carried out in the Dominican Republic, Mexico, India, Tanzania and Thailand, factors relating to economic resources and gender influenced the forms of care and support made available to people living with HIV and AIDS. Adults and children in poorer households and communities suffered most. Beliefs about sexual transmission were influenced by what was, and was not, thought to be appropriate conduct for men and women. Prevailing gender relations affected what care was provided, by whom, to people living with HIV and AIDS. Future programmes of HIV-related prevention and care should place more stress on the vulnerability of poorer households and women. More attention needs to be paid to investing in, and supporting, those in the informal sector (mostly women) who provide care. Furthermore, the responsibilities of men to appraise their own HIV-related risk and to protect and support their partners should be addressed.