Women and Girls
- Outside assistance for home- and community-based care programs with household care can be effective in meeting the needs of HIV/AIDS-affected families.
- Training others, such as men and young people, to provide voluntary home care assistance can ease the burden of home care for women.
- Access to ARVs may decrease stigma and improve quality of life.
1. Continued counseling (either group or individual) and related training for those who are HIV-positive and those affected by HIV can relieve psychological distress.
A cluster, randomized, controlled clinical trial conducted in “an impoverished part of southwest Uganda that has been severely affected by the HIV epidemic” (Bolton et al., 2003: 3117) found that group interpersonal psychotherapy was highly efficacious in reducing depression and dysfunction. The link between HIV and depression was outside the scope of this study, but will be the subject of a future study. Mean reduction in depression severity was 17.47 points for the intervention groups and 3.55 for controls. Mean reduction in dysfunction was 8.08 for the intervention groups and 3.76 for the controls. Following the intervention, only 6.5% of those in the intervention groups met the criteria for major depression, compared to 54.7% of the control groups. Prior to the intervention, 86% of the intervention group and 94% of the control group met the criteria for major depression. The intervention villages received group interpersonal psychotherapy for depression as weekly 90-minute sessions for 16 weeks. A local person who had received two weeks of intensive training led groups. The group leader reviewed each participant’s depressive symptoms. The participant was then encouraged to describe the week’s events and link these to symptoms. The group leader then facilitated support and suggestions for change from other group members. The trial compared group counseling to whatever is the usual treatment (which was not delineated). Fifteen villages were randomly selected for studying men and 15 were randomly selected for studying women. In each village, adult men or women believed by themselves and other villagers to have depression-like illness were interviewed using a locally adapted Hopkins Symptom Checklist and an instrument assessing function. A total of 108 men and 116 women completed the study. Eight of the 15 male villages and 7 of the 15 female villages were randomly assigned to the intervention arm and the remainder to the control arm. People confirmed of danger of suicide were not enrolled in the study but referred to a psychologist.
Training for HIV-positive people in Thailand in 2007 resulted in significant improvements in general health and mental health among 260 participants living with HIV in a randomized, controlled intervention trial. Training sessions delivered over 13 weeks included the topics of HIV disclosure, stress management, medication adherence, prevention of HIV transmission to others, parenting while ill, and plans with family members and children. A US training manual was adapted to be culturally relevant by Thai researchers and health providers. The study involved 507 HIV-positive participants (67.2% women), with 260 participants in the intervention and 247 receiving standard care. A significant improvement was noted in general health along with a significant improvement in mental health among participants in the intervention group over 12 months and a decline in general health, along with a relative decline in mental health among participants in the standard care group was observed based on the Medical Outcomes Study HIV Health Survey instrument and Social Support Scale, and the Thai Family Functioning Scale. Family functioning was positively associated with an individual’s perceived general health.
A study in South Africa assessed the psychosocial impact of HIV/AIDS on 100 HIV/AIDS-affected educators before and after participation in a training program and found that the program empowered the educators to cope more resiliently with the personal and professional impacts of living and teaching in an HIV/AIDS-affected setting. Prior to participating in the training program, a majority of participants reported negative feelings, poor sleeping and eating patterns, fear of stigmatization and social exclusion, and unpreparedness to fulfill professional roles as a result of HIV/AIDS. Participants also expressed concern over the impact of HIV/AIDS on learners and mentioned their obligation to include information about HIV/AIDS in their daily curriculum. Post-training, participants reported perceptions of enablement on a personal and professional level. In addition, participants described themselves in positive terms and noted professional growth. Participants were divided among 10 groups and 92% were female. Educators who considered themselves HIV/AIDS-affected included educators with loved ones, colleagues, or learners who were HIV-positive or who died from an AIDS-related illness and/or taught children made vulnerable through HIV/AIDS. The training program included nine thematic modules covering health promotion, the psychosocial impact of HIV/AIDS on educators, stigma, healthcare, and resilience.
A study evaluated the efficacy of an individualized psycho-education (PE) program in reducing psychological distress and risky sexual behavior and enhancing self-disclosure associated with an HIV diagnosis among attendees of a walk-in non-governmental voluntary counseling and testing (VCT) center in Nigeria. Researchers found that at four weeks post-intervention, significant reductions on all measures as well as reduction in risky sexual practices were observed in the treatment group compared with the wait-list group. Treatment group members were also significantly more likely to disclose their serostatus and accept their HIV status as a way of coping, compared with the wait-list group. Ninety-four consecutive individuals were asked to complete a pre-counseling, baseline questionnaire detailing their sociodemographic characteristics, psychopathology, sexual practices, self-disclosure intention and coping behaviors. They were screened for HIV and post-test counseled. Sixty-seven individuals (72.2%) who tested positive were consecutively randomly assigned to one of two groups: a PE program (four 60-minute weekly manual driven sessions) (N=34) and a wait-list (WL) control group (N=33). The major outcome measures used were the Crown Crisp Experiential Index (CCEI), the Beck Depression Inventory (BDI) (Beck et al., 1961), self-report sexual practices in past three months, self-disclosure intention and the brief COPE.
2. Peer support groups can be highly beneficial to women living with HIV.
A 2006-2007 study followed 71 HIV-positive pregnant women, attending maternity clinics in South Africa, for six months. The study found that mothers in the Mamekhaya program saw improvement in establishing social support, higher rates of attendance at clinic visits (58% versus 36%) and higher rates of testing infants for their HIV serostatus (97% versus 85%) than the group receiving standard PMTCT services. The study compared an intervention of combined peer-mentoring program and an adapted cognitive-behavioral intervention (Mamekhaya) to standard services for prevention of mother-to-child transmission. All mothers received standard care, while 40 mothers additionally participated in the intervention. The program trained HIV-positive mothers, who had recently delivered a child and had used PMTCT services, to mentor an expectant mother. These mentor mothers were trained to provide support through pregnancy and delivery. The mothers in the intervention group attended eight small group sessions conducted by mentor mothers to discuss healthy living (when to take ARVs, dealing with symptoms), feeling happy and strong (dealing with stigma, finding support, coping), partnering and preventing transmission (partner testing, disclosure, partner sex, family planning), and parenting (feeding choice, custody, attachment, testing, postnatal care). Sessions included review of recent experiences, role-playing, teaching and group discussions. All measures were self-reported. There were few differences between the intervention and the control groups with regards to positive coping, measures of HIV discomfort, satisfaction with social support or attitudes related to bonding.
Thirty in-depth interviews with women living with HIV in Vietnam who participated in a support group starting in 2004 that were interviewed again after two years, along with 23 husbands and 18 mothers-in-laws, found that a support group provided a major source of emotional support to the mothers living with HIV, with most of the thirty women learning how to do peer support work, run a business or keep a job. “I have come to life again and don’t suffer from an inferiority complex any longer" noted a 23 year old HIV-positive woman (Nguyen et al., 2009: 147). Through the support group, women access information and services, both for themselves and their children. Peer counselors accompanied the HIV-positive women to health facilities in groups of five. Mothers-in-law also learned to change as the HIV-positive women themselves accessed information, services and support: “In the beginning, I had no idea how HIV is transmitted. All of us were very afraid of it… Now I feel so sympathetic to my son and daughter-in-law. I wish I had not been so awful to them” (Nguyen et al., 2009: 148). Prior to the support group, their families would not have meals with them, forbade them to touch their own baby and kept the mother’s HIV-positive status a secret from neighbors. Mothers acutely felt stigmatized by health providers. During PMTCT counseling, “nearly all the information given to infected women during counseling was aimed at protecting other people from infection... Very little was explained about the potential risks to their own health or how they could keep healthy” (Nguyen et al., 2009: 145). Only six of 30 women were given postnatal appointments by health facilities. Women were blamed by in-laws for ‘not being able to protect their husband form social evil behaviors’ or for ‘being a source of transmission to a beloved grandchild’ (Nguyen et al., 2009: 145). Families would not spend money on the HIV-positive mother’s care: “Anyway they will die in the future… It’s a fatal disease. So it’s better to use money properly” said one mother-in-law (Nguyen et al., 2009: 146). Training was provided to the support group in communication skills.
A study from 2003 to 2005 in South Africa with 186 women and 64 men, all living with HIV, found that the 27% (52 women and 15 men) who joined a support group had scored better on physical and mental health items than those who did not join a support group. Almost 90% rated that the support group had a positive impact in their lives. The support group also helped with disclosure and had made them more able to access services and information related to HIV/AIDS. The support group may also have made participants feel more in control of their lives, going from being passive recipients of help to becoming active agents.
A cross-sectional study of 147 pregnant women living with HIV in Zimbabwe found that access to HIV care and treatment was significantly associated with those enrolled in a clinic-facilitated HIV support group, with those in the support group 2.34 times in multivariate analysis to access HIV care and treatment.
Evaluation of the mothers2mothers (m2m) program in, South Africa found that the m2m program provided a strong continuum of care to the women and infants. Compared to non-participants, m2m participants had greater psychosocial well-being and greater use of PMTCT services and outcomes. Postpartum program participants were significantly more likely to have disclosed their status to someone than non-participants, and to have done so prior to delivery. M2m seeks to reduce PMTCT, empower pregnant and postpartum women to improve their health and the health of their babies, fight stigma and encourage and support disclosure. The program offered education and psychosocial support to HIV-positive pregnant women and new mothers, assisted women to access PMTCT services, and followed up to ensure care of mothers and infants after delivery.
In-depth interviews with 26 women living with HIV in Thailand found that the women stated that becoming a member of a support group helped women reverse the stigma of HIV.
In-depth interviews with 30 women living with HIV in Uganda found that joining support groups with other women living with HIV created a feeling of solidarity that allowed them to come to terms with their HIV status.
A study with in-depth interviews from 2005 to 2006 with 70 participants on treatment in Uganda found that participants stated that joining a support group (TASO) “was an important step that gave them access to vital psychological support, medical treatment and food rations, which enabled improved health and recovery of hope” (Seeley and Russell, 2010: 377).
A study with 162 women in Uganda found that 30.9% stated that services provided by TASO and their churches enabled them to cope with their situation.
A study in South Africa based on interviews with 317 pregnant HIV-positive women found that women reported benefiting from a structured support group. Program material for the support group meetings was based on a needs assessment. The meetings provided information on HIV; the emotional experience of being HIV-positive; sharing coping with difficult situations, using role plays; planning for disclosure; what they wanted from their partners; dealing with stigma; and goal setting and future planning. Masters level psychology students facilitated the support groups. Interviewers following the support group sessions found that the women found the support group valuable: “It was a shelter to hide away where I could talk freely. I can tell others now. Now I am stronger, I can stand on my own” (Visser et al., 2005: 339). Another woman stated: “It was a positive picture of HIV. I did not feel alone and embarrassed anymore” (Visser et al., 2005: 339). Role-playing was especially helpful. In addition, the introduction of human rights helped women to realize “that they were not at fault, but that other people discriminated unjustly against them” (Visser et al., 2005: 340).
A qualitative study of interviews with 75 people living with HIV (43 females, 32 males) from 20 countries, including Australia, Botswana, India, Kenya, South Africa, Thailand, Uganda, Zambia, and Zimbabwe, conducted between 1997 and 1999, found that women were more likely to seek peer support than men and that peer support groups were “lifelines.”
3. Outside assistance for home- and community-based care programs with household care can be effective in meeting the needs of HIV/AIDS-affected families.
A study of six home-based care programs in South Africa (year not specified) found that a range of 10 expressed needs of program beneficiaries were met by household members alone, by household members and outside help, and by outside help alone, with some unmet need, particularly for financial aid. The six programs represented programs that work in rural areas and informal settlements. Data were collected through a household survey of 374 clients, focus group discussions with 59 program beneficiaries and 53 caregivers, financial records and service statistics, and interviews with financial officers, program managers and caregivers. The largest expressed need was for emotional/spiritual support through counseling (over 80%), following by physical care, nursing care, chores and information (from 55-70%), transportation, financial aid, family care and legal aid (from 20-35%), and sanitation (around 5%). Beneficiaries looked to outside help particularly for counseling, nursing care, information, transportation, family care and legal aid. They looked least to outside help for household chores. Even with outside help, the study found that household caregivers spent more time per week assisting the person living with HIV/AIDS then the outside caregiver. The qualitative component of the research found that respondents indicated that they had unmet needs related to financial aid, access to medical care and emotional care.
A 2006 study in China measuring the effectiveness of a “planting and eating” soybean project to increase soybean protein in the diet of 47 people living with HIV/AIDS, found that after eating soy, 93% felt better, 86% reported less sickness, 61.3% had higher total blood protein and blood white protein and 58.1% had higher blood hemoglobin. Participants received soybean seeds of 320.5 kg and the harvest was 3465 kg four months later. The project included two training courses. The first covered basic knowledge of planting soybean, in addition to assistance during the preparation and planting periods. The second covered nutrition and taught participants how to integrate soybean into their diets. Of the 47 participants, 60% were women. In addition to changing the diet behavior of the participants, the project changed the diet behavior of their family members, as well as other community members. With a harvest output 10 times higher than the original output, the harvested soybeans could be used as seeds for the next season. The participants reported overall satisfaction with the project.
A study in China assessed the living conditions and palliative care needs of 93 end-of-life people living with HIV/AIDS in rural Henan province and found that the Hunan Provincial Government’s policy of treatment and palliative care to have a beneficial impact on end-on-life AIDS patients. Henan’s policy provides free HAART to the rural poor and includes no-cost ARV drugs, no-cost VCT, no-cost PMTCT, no cost schooling to AIDS orphans, and care to people living with HIV/AIDS. The World Health Organization Quality of Life for HIV (WHOQOL-HIV) BREF Chinese Version was used to measure quality of life and the Memorial University of Newfoundland Scale of Happiness (MUNSH) measured subjective welfare. Qualitative interviews and group discussions assessed the specific needs of the end-of-life patients and provided information on the palliative care model. Living conditions of the end-of-life AIDS patients were moderate. Participants recorded high scores for quality of life, social relationships, and spirituality/religion/personal belief domains (Sheng et al., 2010: 283). Results suggest that care would be improved by assisting the family unit as a whole.
4. Training others, such as men and young people, to provide voluntary home care assistance can ease the burden of home care for women.
A study of Africare’s Male Empowerment Project in Zimbabwe from 2003 to 2004 which trained 80 male home care volunteers to provide basic nursing care, infection control, and psychosocial support found that the trained male caregivers reduced the workload of the primary caregivers, who were primarily women. Clients felt that the simple fact that “‘someone cared enough to visit’ was motivation enough for living” (Hall et al., 2007: 10). Over 80 percent gathered firewood and over 60 percent assisted with gardening and fetching water. Clients and caregivers were found to be supportive of the program, with primary caregivers and clients giving credit to the voluntary caregivers for improving the mental health and physical well being of the clients. While voluntary caregivers assisted with basic household chores, skills that are not traditionally assigned to men such as feeding were less readily undertaken. This project proved successful in increasing men’s acceptance of providing care to people living with AIDS. The study used a questionnaire prior to the intervention and then 18 months later, two focus groups and five in-depth interviews. The male volunteers received training, covering topics such as HIV transmission and prevention, communication on sensitive topics, life planning, basic nursing care and end of life care. Lack of salary presented problems for the men who were looking to offset the time that could have been spent in income generation. Frequent in-service training and monitoring was recommended for home-based care.
A Horizons project in rural Zambia assessed the strategy of building young people's capacity to provide care and support to people living with HIV and AIDS. Members of youth anti-AIDS clubs in schools and communities were trained as adjunct caregivers, using a locally developed curriculum that allowed them to explore and challenge gendered notions of caregiving, and that emphasized networking with existing resources. Results show that caregiving increased among males (47% to 82%) and females (41% to 78%). Both sexes provided similar caregiving services, including help with household chores and personal care tasks. Youth also undertook activities with children to decrease their isolation, help them stay in school, and reach additional services. While clients and caregivers reported positive aspects of the programme, both reported frustration with the youths' inability to meet material needs. This study demonstrates that trained youth already involved in anti-AIDS efforts can meet a range of care needs and be valuable assets to their community. It also highlights the importance of communicating clearly what youth can and cannot do, ongoing monitoring and support of youth caregivers, and involving community leaders to give youth credibility and access to local resources.
5. Access to ARVs may decrease stigma and improve quality of life. [See also Reducing Stigma and Discrimination]
A study of 735 treatment-naïve patients from South Africa, of whom 518 were women, and who were followed up for 12 months on ART found that their internalized stigma score decreased significantly while on ART. However depression symptoms remained high.
A study with 1,454 people living with HIV (72.7% female) from Lesotho, Malawi, South Africa, Swaziland and Tanzania found that those taking antiretroviral therapy reported significantly increased life satisfaction scores as compared to those not taking antiretroviral therapy, as measured by the HIV/AIDS Stigma Instrument (Holzemer et al., 2007 cited in Greeff et al., 2010) and the HIV/AIDS Targeted Quality of Life Instrument. Perceived HIV stigma has a significantly negative and constant impact upon life satisfaction (Homes and Shea, 1998 cited in Greeff et al., 2010).