Funding for HIV/AIDS care, treatment, and prevention programs in the developing world has increased dramatically in recent years, prompting major expansion of service delivery.1 However, little is known about which models of service delivery would be most effective in countries where healthcare infrastructure and access to transportation are limited. Clinical management of HIV/AIDS in Africa has been mainly through facility-based models focusing on individuals. With respect to social outcomes, facility-based approaches have been problematic, particularly for HIV-positive women, who have experienced difficulties with disclosure and at times domestic violence.2-9 An alternative to facility-based, individual-focused HIV/AIDS care is home-based care, which has been used for primary healthcare promotion and disease-specific interventions for tuberculosis and leprosy.10-14
Home-based HIV care may have advantages over facility-based care, particularly in settings where transport to clinic-based programs is a major barrier to accessing care.12,15 Home-based HIV care programs provide the opportunity to care for multiple family members, to identify and support HIV-discordant couples, to provide enhanced social support for adherence, and to ease the overload of patients in hospital settings.16-19 Thus, home-based care models may well improve access to care for HIV-infected individuals, be cost effective for society, and increase social support for people living with HIV.16,20-22 However, concerns about the impact of alternative approaches to HIV care delivery on stigma and individual rights have been raised.11,23 HIV remains a stigmatizing condition and home-based care may lead to public disclosure, which could be associated with harm.24,25 Empirical data on social outcomes associated with home-based AIDS care programs are needed to determine the social impact of such interventions.
We examined the frequency of negative and positive social outcomes experienced by HIV-infected participants in a home-based antiretroviral therapy (ART) program in rural Uganda before and 3 months after ART initiation.
The Home-Based AIDS Care project (HBAC) is situated in Tororo and Busia Districts, in rural Uganda with a participant catchment area of approximately 100-km radius surrounding Tororo town. Subsistence farming is widespread in this region and the population is poor; 46% are unable to meet minimum daily calorie requirements.
The HBAC project provides comprehensive, home-based HIV care including ART and tuberculosis (TB) medication to 1000 persons with HIV/AIDS. In addition to providing ART and TB care, the project includes a randomized controlled trial designed to evaluate 3 methods of monitoring response to ART (clinical monitoring by trained lay persons only, clinical monitoring plus quarterly CD4 cell counts, and clinical monitoring plus quarterly CD4 cell counts and viral loads). Field officers conduct weekly home visits to all participants for drug delivery and monitoring. Identical behavioral interventions were offered to all participants, as described elsewhere.26
All participants provided informed consent. The study protocol was approved by the Ugandan National Council of Science and Technology, and the Institutional Review Boards of the Uganda Virus Research Institute, the University of California, San Francisco, and the Centers for Disease Control and Prevention.
Enrollment and Data Collection
The HBAC participants were recruited from The AIDS Support Organization (TASO), a nongovernmental organization that has provided services for HIV-infected people in the Tororo area since 1990. Some HBAC participants had participated in a prior diarrhea prevention and cotrimoxazole prophylaxis study, which also involved weekly home visits27 and were not included in this study. HBAC eligibility included having a CD4 cell count <250 cells/μL or symptomatic HIV infection. Participants were identified, screened, and enrolled between May 2003 and May 2004. Questionnaires were translated and back-translated into 7 local languages and administered to adults (18 years or older) at baseline and 3 months after ART initiation. Interviews were conducted by trained research counselors who had good rapport with the clients and followed up for counseling support as needed.
At baseline, using a structured questionnaire we asked participants about their experiences at the time of sexual debut (eg, forced or consensual). Further, using the question “Have you experienced any of those events in the past?” we asked if they had experienced any of a list of positive or negative social outcomes in their lifetime (measured as dichotomies). Those who had ever experienced an outcome were asked if it had occurred in the previous 3 months. Three months after enrollment into HBAC, we again probed the occurrence of events within the past 3 months; if participants answered yes, we asked whether this event was associated with HBAC participation. We queried the following positive events: family support, community support, and strengthening of sexual relationship, and the following negative events: break-up of marriage, alienation by family, discrimination by community, and physical abuse by a partner analyzed for women only. The variables measures are shown in Table 1.
Questionnaire data were double-entered in Epi-Info and analyzed in SAS version 9.1. Analyses excluded data from those who had prior ART experience or prior home-based care experience. Baseline interviews collected within 2 weeks of initiating ART and follow-up interviews collected 75 to 150 days after initiating ART were included. Gender differences in baseline characteristics were assessed using Pearson's χ2 test. Adjusting for gender, age group, education level, marital status, income group, religion, and lifetime social events, social outcomes were analyzed using generalized estimating equations (GEE) with an exchangeable working correlation structure.28
Of 1006 adult participants at baseline, 12 (1%) had missing interviews, 17 (2%) had late interviews, 37 (4%) had taken ART previously, and 286 (30%) had prior home-based care experience, leaving 654 participants for baseline analysis. After 3 months, a further 56 were excluded due to death (5%), relocation, (3%), or missing interview data (1%), leaving 598 (91%) for follow-up analysis. There were no significant demographic differences between the excluded 286 (30%) with prior home-based experience and the 654 participants included in baseline analysis and likewise between the 56 (9%) participants excluded after baseline and the baseline group of 654.
At baseline, 72% were women and mean baseline CD4 cell count was 123 cells/μL. Of all women in the study, 20% had forced sex at sexual debut, with an average age at first sexual encounter being 16 years (age range 10-25); 96% of participants had disclosed their HIV status to someone other than a healthcare provider (Table 2). There were no significant differences between men and women in disclosure rates or lifetime experiences of family emotional support, community support, alienation by family, and community discrimination. However, men were more likely to have experienced a break-up of a marriage and a strengthened partner relationship. Among the women who had experienced partner abuse in their lifetime, 34% were married/cohabitating or had had a sexual partner in the past 3 months and of these, 30% had had forced sex at the time of their sexual debut. A stratified analysis cutting at the median length of time since diagnosis and disclosure revealed no significant differences in outcomes.
During the 3 months before enrollment, 76% reported one or more positive experiences, including community support (62%), family support (66%), and relationship strengthening (16%) (Table 3). Only 12% of participants reported negative experiences, including community discrimination (8%) and family alienation (5%); 1% of women experienced physical abuse by a partner, although 46% had experienced partner abuse in their lifetime.
Three months after enrollment, participants were more likely to report community support (adjusted odds ratio [OR] for 2.10, 95% confidence interval [CI]: 1.46 to 3.03, P < 0.001), family support (OR 2.65, CI: 2.01 to 3.49, P < 0.001) and relationship strengthening (OR 2.10, CI: 1.46 to 3.03, P = 0.001) than at baseline; 84% attributed these experiences to ART program participation. There was no change in the incidence of negative life outcomes (P = 0.334). Participants associated HBAC participation with a greater number of positive than negative outcomes (84% vs. 6%). Rates of reporting any single negative outcome did not change significantly after 3 months of HBAC participation (Table 3). However, reports by women of partner abuse in the previous 3 months increased from 1% at baseline to 2% at follow-up (OR 3.20, CI: 0.94 to 10.9, P = 0.063). Of 5 (1%) of 436 women who reported abuse associated with program participation, all had a history of domestic violence. In additional analyses assessing overall experiences after 3 months of follow-up, we found that 78% of participants experienced only positive outcomes, 9% experienced both positive and negative outcomes, and 1% experienced only negative outcomes. Twelve percent did not report either positive or negative experiences. Of participants reporting outcomes they associated with HBAC participation at follow-up, 464 (79%) had only positive experiences, 35 (6%) had both positive and negative experiences, 90 (15%) did not report any negative or positive outcomes, and <1% had only negative experiences.
Among participants in an ART program with weekly home visits in rural Uganda, the vast majority-over 80%-experienced positive social outcomes and very few experienced negative outcomes. The proportion of participants experiencing family emotional support, community support, and strengthened relationships increased and most participants attributed these positive experiences to their participation in the program. The overall frequency of negative outcomes did not change. These findings suggest that the provision of treatment and care services through home-based delivery in resource-poor settings can result in multiple positive social outcomes.
Concerns about physical abuse of women with and without HIV infection is merited because domestic violence is widespread in Uganda.6,29 In our study, 46% of women had experienced partner abuse in their lifetime whereas other studies report 25% and 38% in Uganda and Tanzania, respectively;6,30 even higher rates have been reported among HIV-infected populations-55% and 63%, respectively.5,6 Although the increase in physical abuse experienced between baseline and follow-up (1%-2%) was statistically nonsignificant, 5 women reported abuse that they related to participation. All of these women reported a history of domestic violence. With women aged 38 years on average, it is conceivable that they may have been exposed to potential violence for years;30 in addition, about one third of these women reported experiencing forced sex at the time of their sexual debut. It is possible that illness before enrollment resulted in reduced rates of domestic violence at baseline and that when women regained their health, domestic violence also resumed. However, the overall rate of domestic violence during the study was low. Distinguishing between background rates of violence and new violence that is triggered because of participation in an HIV/AIDS program is important so that programs are not mistakenly implicated as the initial cause for domestic violence.5-7 However, HIV/AIDS care and treatment programs could provide an opportunity to protect women against domestic violence, potentially through asking about a history of domestic violence at enrollment and providing targeted interventions for women and their partners. Home-based care offers an excellent opportunity for couple counseling, which facilitates disclosure and may minimize violence against women.
Generalizability of our findings may be limited because there was no external control group, participants had received prior care and support through a nongovernmental organization, and had high levels of disclosure at enrollment. Nevertheless, the results are likely to be replicable in other settings that provide ongoing care and support. Although interviewers were trained in rapport-building techniques to minimize potential bias, the use of field counselors in face-to-face interviews may have increased socially desirable responses. Moreover, because the same interviewers were used at baseline and follow-up, we do not think that the impact of any bias that may have occurred would have been different at baseline or follow-up. We identified and assessed a defined list of positive and negative social outcomes, based on our review of the literature and discussions with service providers and clients. However, although we prompted participants to mention any additional social experiences beyond those we listed, it is possible that we missed other social experiences relating to study participation. Also, HBAC offers couple counseling whose outcomes may be highly debated. Although HBAC was conducted within a study setting, modified versions of the HBAC home-based approach are now being implemented programmatically in Uganda outside of HBAC setting for over 6000 patients in both rural and urban settings. To date, programs have not reported any increases in negative social outcomes including partner violence. Also, changes in positive social outcomes may have occurred due to the health benefits of ART. We were not able to accurately distinguish outcomes occurring from these biological effects from outcomes related to participation in a home-based care program. Finally, ongoing follow-up is merited beyond our 3-month follow-up and will be important to assess whether the short-term social benefits of the program can be maintained.
With the high cost of ART, even for generic formulations, the added investment by ART programs for a counseling and ongoing support component would be marginal whereas the potential gains in increasing social support for those persons affected by HIV could be substantial. Ongoing research should continue to optimize ART delivery methods to reach the largest number of HIV-infected individuals, but concerns regarding negative social outcomes should not impede expansion of home-based HIV/AIDS care programs. In rural Uganda, participation in a home-based ART program was associated with multiple positive social outcomes for almost all participants.
We thank the HBAC project staff and clients for all their time and efforts. Dr. R. Downing supervised all laboratory work for HBAC; S. Bechange and S. Moss assisted with data management. We also thank Dr. H. Wolfgang for reading this article and giving comments. We also thank Dr. E. Madraa and the Ministry of Health for all the support for this project and T. Wamala for her assistance with the references.
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