Horizons | Research Summary | Involving Youth in the Care and Support of People Affected by HIV and AIDS

RESEARCH SUMMARY

July 2003

Involving Youth in the Care and Support of People Affected by HIV and AIDS

Key Findings (continued)

Caregiving activities among youths increased in the intervention area. At the first survey round, almost half of both males and females in both areas reported that they recently provided care to a family member or neighbor with a chronic illness, although few had the appropriate knowledge and skills to deal with the complex health needs and social issues associated with HIV/AIDS. Little change in care activity by respondents was documented in the comparison area at follow-up, while the proportion of youth in the intervention area reporting that they provided care almost doubled by the second survey. For example, club members in the intervention area providing care increased from 47 percent to 82 percent for males and from 41 percent to 78 percent for females (p < 0.05).

Although high at the first round, trained youth caregivers’ comfort level in providing care to PLHA increased, with females reporting the greatest gains (72 percent to 91 percent, p < 0.05) compared to males (81 percent to 90 percent, p < 0.05). By the follow-up survey, intervention area club members reported that they conducted one to two visits per week to families affected by HIV and AIDS, with females caring for an average of approximately four PLHA and four OVC and males caring for an average of four PLHA and five OVC in the last three months. In the comparison area, youths reported caring for fewer PLHA and OVC (Figure 1).

Figure 1 Mean number of PLHA and OVC cared for in last 2 months at round 2

Trained youth caregivers successfully provided a wide range of services but were unable to meet basic material needs. Youth caregivers reported that they were most able to provide help with cleaning, nursing care, counseling, and making clinic referrals, and PLHA reported satisfaction with these services. However, both youth caregivers and PLHA reported dissatisfaction with the youths’ inability to meet material needs, including food, medicine, and transportation. Contrary to early concerns that youths would only do tasks according to expected gender roles, researchers found that male and female caregivers provided similar kinds of care-giving services, including counseling and housework. Although same-sex caregivers were required for bathing, the only other activity in which a gender difference appeared was in contacting external organizations for assistance, which was reported by a greater proportion of males.

OVC emerged as a key concern for PLHA and caregivers. The study originally focused on meeting the needs of PLHA, but trained youth caregivers soon began reporting that children of PLHA in the homes they were visiting also required care and support. As a result, the intervention was expanded to include the specific needs of OVC. The youth caregivers were encouraged to involve OVC in recreational activities in an attempt to reduce their sense of isolation, to contact schools to make sure that their needs are recognized, and to make referrals to NGOs working with OVC in cases where additional support is required.

Caregivers and PLHA felt positively about the program. Male and female caregivers alike appear to have been well received by the PLHA; trained youth caregivers reported that PLHA were friendlier and requested more visits over time. Reported increases in disclosure of HIV status to them by PLHA indicated a growing level of trust of the youth caregivers. Trained youth caregivers reported a number of benefits, including achieving satisfaction from serving their communities, gaining the respect of communities and leaders, increasing their own knowledge and skills, undertaking income-generating activities, and achieving a new status that permitted access to institutions and services. Some also said that the caregiving activities had provided them with the motivation to change their own sexual behavior. Despite the benefits of the program, some youths said they experienced emotional distress when caring for PLHA and OVC with needs that were beyond their capabilities, such as dealing with rejection and family disputes, funeral arrangements, or severe food shortages.

Youth in the intervention area increasingly believe that they are at risk of HIV infection. Youth in the intervention area became significantly more aware that they were potentially at risk of HIV infection during the course of the study. Figure 2 shows that in the intervention area, males believing that they were not at risk of infection dropped sharply from 76 percent to 31 percent (p < 0.05), and from 89 percent to 41 percent among females (p < 0.05). Smaller declines were apparent in the comparison area, where youth also received prevention training (males: 61 percent to 51 percent; females: 67 percent to 62 percent, NS). Discussion at the dissemination workshops revealed that the greater change in perception of risk in the intervention area could be attributed to respondents’ enhanced awareness of the consequences of HIV through increased contact with PLHA, some of whom were close to their own age.

Figure 2 Proportion of youth who believe they are not at risk for HIV infection

Perceptions of who is at risk of HIV infection changed in the intervention area, as youth increasingly recognized that females are more vulnerable (males: 61 percent to 74 percent, p < .05; females: 50 percent to 69 percent, p < 0.05). There was no statistically significant change in the comparison area, although baseline levels were similar.

Youth reported high levels of abstinence. Recent sexual activity among anti-AIDS club members was low, with high levels of reported abstinence (including secondary abstinence²) among males and females. At the first round, 64 percent of males and 88 percent of females in the intervention area reported that they had not had sex during the three months preceding the survey, and this did not change significantly at the second round. Among respondents who said that they had had sex during this period, most of them (68 percent of males, 90 percent of females) claimed to have had only one partner, with no significant changes at follow-up. In the comparison area, 79 percent of males and 90 percent of females said that they had not had sex in the three months preceding the survey. Of those who had sex during this period, 74 percent of males and 100 percent of females reported that they had one partner.

Peer pressure and gift giving influence risk behaviors. As with many young people, respondents in this study indicated that peer pressure is an important influence on risk behaviors, including their consumption of alcohol and drugs and having a boyfriend or girlfriend. Both males and females mentioned the exchange of sex for gifts as an added pressure on young people, allowing them to acquire food or money for basic needs or luxuries for themselves or their families. For example, in the first round, 6 percent of males and 16 percent of females in the intervention area, and 11 percent of males and 13 percent of females in the comparison area had exchanged sex for gifts. Participants in the dissemination workshops corroborated the existence of sexual exchange by females and males, and cited examples of boys pressured into sex with older women, often businesswomen. They also felt that orphans might be particularly vulnerable to forced sex and highlighted the need to raise the issue of forced sex within the extended family.

Anti-AIDS club members examine study findings.

Photo credit: Katie Schenk Horizons/Population Council

Reported condom use increased only among trained youth caregivers, although it was already high in both areas. Among the youths who reported that they had had sex, ever-use of condoms was similar between the two study areas at baseline, but increased significantly only in the intervention area: among males from 61 percent to 81 percent (p < 0.05), and among females from 67 to 81 percent (p < 0.05). Among those who reported that they had ever used a condom, reported condom use at last sex was high and changed little, fluctuating at around 80 to 90 percent of males and females.

Although the youths felt that their knowledge of condoms improved through the prevention training, and their motivation to protect themselves from HIV increased through the care and support activities, club members at the dissemination meetings revealed that condoms are still used inconsistently, reflecting respondents’ limited ability to get condoms and some respondents’ negative views of condoms within long-term relationships. These barriers call into question the accuracy of the high reported rates of condom use.

Youth in the intervention area increasingly acknowledged joint responsibility for providing a condom. At baseline in the intervention area, 84 percent of males and 74 percent of females believed that supplying a condom should be the responsibility of males, and the frequency of this response dropped significantly by the second round (to 58 percent of males and 54 percent of females, both p < 0.05) as youth recognized that condoms were a joint responsibility. Little change in this indicator was observed in the comparison area, where approximately 70 percent of all respondents at both survey rounds said that supplying a condom was a responsibility for males.

Anti-AIDS club members reported that they have changed their behavior. In both study areas, youth were asked whether they had changed their behavior since joining the anti-AIDS clubs. Youth in both intervention and comparison areas reported statistically significant increases in ever-use of condoms and restricting sexual activity to one partner. Although these data may not reflect the same trends as the indicators above, they may represent respondents’ intentions to change and improved prevention awareness. In the intervention area, there was a significant increase (although overall levels were low) in males and females who reported asking their partner to be faithful, indicating enhanced partner communication (see Figure 3), while youth in the comparison area remained virtually unchanged. At the dissemination workshops, the participants explained that being a member of an anti-AIDS club was a great motivation for behavior change, and that the behavior of club members was qualitatively very different from that of their non-club member peers.

Figure 3 Youth who reported that they asked partner to be faithful

There was no change in stigmatizing attitudes among trained youth caregivers, who already felt positive about PLHA. Almost all indicators used for stigma showed high levels of acceptance of PLHA by youth in both study areas and survey rounds, with no gender differences, and this was not increased or eroded at follow-up. Most youths said they would feel comfortable about shaking hands with, using the same plate as, or working with PLHA. The only indicator that dropped significantly was whether PLHA deserved compassion, which fell among youth in the comparison area only, from 79 percent to 67 percent (p < 0.05). In the intervention area, where youth had closer contact with PLHA, 90 percent of youth felt that PLHA deserved compassion, which was maintained at 91 percent at follow-up.

Trained youth caregivers reported a decrease in perceived community stigmatization of families affected by AIDS. In the first survey round, approximately one fifth of youth in both study areas said that PLHA are treated badly in the community. Examples cited in the dissemination workshops included verbal abuse, isolation, rejection, rumors, and gossip, which were felt to be worse in the villages than the semi-urban areas. The quantitative results did not change between surveys, but qualitative methods revealed that some PLHA and youth caregivers felt that the program was beginning to make a difference.

Our community is beginning to accept PLHA since youth caregivers started visiting; they are not as fearful as before.
—PLHA, Kale Community

We have noticed that family members are beginning to take more interest in caring for relatives with HIV/AIDS.
—Youth caregiver, Mantumbusa Community Club

When survey respondents were asked about families who have lost members to AIDS, there was a significant increase in the proportion of youth in the intervention area who felt they were treated the same as others by the community (64 percent to 78 percent; p < 0.05). No similar improvement was recorded in the comparison area. This shift may be due to specific advocacy activities conducted by trained youth caregivers to encourage support of AIDS-affected families, as well as increased visibility of the program in the targeted communities (e.g., youth wore special aprons that identified the program) and involvement of village heads.

Headmen go ahead of time to inform the community of our care and support activities.
—Mutiti Basic School Club caregiver

Our village head gives us protection and if a problem arises, he is there to solve it.
—Kampampi Basic School Club caregiver

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For additional information please contact:
Horizons
Population Council
4301 Connecticut Ave. NW, Suite 280
Washington, DC 20008
Telephone: +1 202 237 9400
Facsimile: +1 202 237 8410
E-mail: horizons@popcouncil.org

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This page updated
03 Jan 2009