Focus on: HIV Counseling and Testing in the Home

Focus on: HIV Counseling and Testing in the Home

Breathing new hope into the lives of rural Tanzanians

Poverty and stigma are just a few of the barriers to tackling HIV and AIDS in Tanzania. But an innovative home based counseling and testing program dedicated to reaching HIV positive men, women and children in rural areas, and linking them to life saving services, is chipping away at those barriers and creating new life opportunities for tens of thousands.

Although HIV testing and counseling is pivotal to the provision of successful care and treatment services, in 2007, only 15 percent of Tanzanian’s knew their HIV status. In an effort to support the government’s initiative to scale up access to these crucial services, TUNAJALI (We Care), with funding by the American people through the U.S. Agency for International Development (USAID), as part of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), is bringing these services right to the doorsteps of some of the hardest to reach populations.

Home based counseling and testing (HBCT) is just one example of an innovative alternative to facility based service delivery that is achieving impressive results in Tanzania. Although 75 percent of Tanzanians live within five kilometers of a health facility, utilization of these services for HIV testing has been low. “Facility based counseling and testing still has a stigma attached to it in this country,” says Dr. Rowland Swai, Program Manager of the National AIDS Control Program (NACP).

The home based model is designed to increase the uptake of counseling and testing services especially targeting people who are least likely to attend facilities due to access and fear of discrimination and who are at highest risk of HIV. The clear advantage for this model is that it’s conducted in the privacy of a client’s home.

 TUNAJALI initiated a pilot program in November 2007 after reviewing lessons learned regarding existing barriers for facility based testing, and after close review of similar initiatives in Uganda. The initiative focuses on HIV patient index households that is, households where there is already a known HIV case. The prevalence of HIV among index household members tested in the pilot sites was initially significantly higher than in the general population, 10% overall compared with national average of 5.8%.

‘The clear advantage for this model is that it’s conducted in the privacy of a client’s home’

However, the latest data shows evidence of a shift towards the prevalence becoming more like the general population. In Ilula village, Kilolo district in Iringa region, some 500km west of Dar es Salaam, for example, the prevalence has gone down from 18% to 16 % against a regional average of 14.7%. Dr. Gottlieb Mpangile, Chief of Party of Tunajali’s Home Based Care Program, says the most significant reason for the shift has been the fact that neighbors to index households are increasingly requesting to be tested.

The program has essentially added an additional window for counseling and testing service delivery, bringing HIV prevention, care, and treatment services closer to the general population.

Results from three pilot districts showed immediate promise with a high uptake of over 95% of index household members agreeing to be tested and receive results, plus a growing number of other community members requesting services, that six months later, a gradual roll-out plan was developed and approved. Currently, the program is implementing HBCT in 17 districts. Up to September 2009, a total number of 62,076 clients (25,144 male and 36,932 female) were counseled and tested. Among them, 2,935 (1,017 male and 1,918 female) tested positive for HIV and have been referred to Care and Treatment Centers (CTCs).

The program has essentially added an additional window for counseling and testing service delivery, bringing HIV prevention, care, and treatment services closer to the general population.

HBCT is proving to be a viable option in Tanzania supplementing other innovative counseling and testing modalities including mobile voluntary counseling and testing, provider-initiated counseling and testing, as well as the more traditional, facility based approaches, especially in areas of high prevalence and low knowledge of HIV status.

Since 2007, as a result of Tanzania’s national testing campaign as well as PEPFAR-funded initiatives like this one, over 4 million Tanzanians have been tested nationally. (To date, over six million Tanzanians have been tested during the on-going national and other testing campaigns in the country, according to the Principal Secretary in the Ministry of Health and Social Welfare)

“People used to be scared to get tested—afraid if they were positive, their houses and families would be ‘broken’. Now, when a counselor comes to visit, they don’t hide or run away. Instead, they call their families together to be tested,” explains Dr. John Mwansombelo, Managing Director of Huruma AIDS Concern and Care (HACOCA) in Morogoro, one of the program’s sub-grantees. The office previously served as the community’s Voluntary Counseling and Testing (VCT) center but since the arrival of home based services and subsequent training of staff counselors, “nobody comes anymore—they do it at home,” says Dr. Mwansombelo describing the success and wide level of acceptance of the initiative.

The Program’s Counsellors

One of the reasons for the high acceptance of home based initiative may be the counselors themselves. Many are HIV positive and have overcome fear, sickness and discrimination and now find purpose giving encouragement, counseling and advice to others. Joyce Kibwana is a typical example of the program’s counselors. She is a 34 year old, HIV positive widow, chosen by her village community to be part of the HBCT team.

After Joyce was diagnosed with HIV, she felt stigmatized by her community on the outskirts of Morogoro. “When I fetched water in the morning, people would whisper and point. They forced me to bring my bucket to the shallow well so my water wouldn’t mix with theirs.” After Joyce’s counselor linked her to a local Care and Treatment Center, she started anti-retrovirals (ARVs) and received follow up counseling from a volunteer in her community. “I got a second chance and I felt obligated to share my experience with others,” says Joyce.

“I am a living example of the benefits of counseling, testing, and treatment,”- Joyce, volunteer and client of HBCT program

She expressed interest in becoming a volunteer to her village counsel, who linked her with the HBCT program in Morogoro where she was trained as an HIV/AIDS counselor. Since then, she has gone door to door talking about services available for people living with HIV/AIDS.

“I am a living example of the benefits of counseling, testing, and treatment,” declares Joyce, who at one point had a CD4 of just eight and was bedridden and making plans for her funeral.

Slowly, after receiving counseling and encouragement from Joyce, her neighbors began showing up at her door declaring their readiness for an HIV test. “People prefer to be counseled and tested in the privacy of their homes,” explains Joyce. “People don’t whisper anymore. Today, they come to me for help. I’m really busy—there’s not enough time in the day to counsel all the people who want it,” she says.

For now, only trained nurses can provide HIV testing. One of the program’s biggest challenges is meeting the high demand for testing with the insufficient number of trained community health workers. “There are times we go out to a community in the morning and when we leave at nightfall, after testing all day, there’s still a line of people still waiting—disappointed,” says Atupele Nyagawa, one of the program’s ‘focal persons’ based in Ilula village, Iringa region..

Meeting potential clients in their homes has exceeded the program’s expectations. The program is reaching clients at an earlier point in their disease progression, and is serving those who may never have come to a facility due to perceived stigma and/or transport inconveniences. “Once a client knows their status and they are properly counseled, they want to get treatment,” says ‘Mama’ Nyagawa.

Couple’s counseling

The program is also providing a vehicle to conduct couple counseling—which has been virtually unheard of in a clinical setting. With the encouragement and assistance of a trusted counselor, clients are more likely to disclose their HIV status to family members. Zefania Nyembe, 32 was tested positive in his home last year by a TUNAJALI counselor. “I was ashamed and afraid to share my status with my family, my community. But my counselor encouraged me, and after a few weeks, we disclosed together to my wife and family. Since then, I work part time at the Care and Treatment Center helping others in the same situation I was in,” explains Zefania, who now volunteers three times a week for the CTC in Iringa.

“We tend not to see as many men as women in the Care and Treatment Centers,” says Georgina Sadiki, counselor and nurse at a CTC in Iringa. “Men sometimes rely on their wife’s HIV status [to determine their own] and are reluctant to be tested themselves, but our counselors are persistent and we’re beginning to see a change,” she added as she filled out enrollment cards for Rose and Isaac Kisogole, a young married couple who were counseled, tested HIV positive, and referred to the local CTC.

“A counselor came to my house last month. My wife and I weren’t sick but decided to get tested anyway. It’s better to know our status—we have three children,” said Isaac, as the two waited to receive their CD4 results at a local Care and Treatment Center.


Goal of HBCT Program

But HIV counseling and testing is only the first step in the process of delivering appropriate care and treatment to people living with HIV/AIDS (PLWHA). The goal of the program is to enroll clients into Care and Treatment Centers where they receive health education, physical examinations, CD4 level counts twice annually, anti-retroviral therapy if needed, treatment for opportunistic infection and adherence counseling. The program also refers for Prevention of Maternal to Child Transmission (PMTCT) services and referrals to Orphan and Vulnerable Children (OVC) services as well.

There are still barriers to accessing care and treatment services, but counselors are making a significant difference. “Because the counselors are based in the client’s communities, follow up is easier. We provide some transport money to a few very poor patients so that they can access CTC services in towns. In some cases where patients live in very remote areas where transport is not available, we have negotiated with CTC staff so that our community volunteers can collect ARVs on behalf of the patients. This arrangement has significantly improved drug compliance and adherence,” explains Priskila Gobba, Program Director of TUNAJALI’s Home Based Care Program.

Through home follow-up, clients also receive nutrition education, health and hygiene advice, and in case of need, material supports such as bed linens, buckets and soap, mosquito nets and other supplies. As part of a home visit, counselors educate family members who have tested negative about the importance of prevention. “We want to offer our clients comprehensive care, not just medical. We need to be aware of what else is happening in their lives. Are they stressed about paying school fees? Are they able to feed themselves? ” says Ms. Gobba.

Socio-economic Support

The program’s clients also receive socio-economic support through the creation of community peer HIV support groups. Counselors receive training in initiating support groups within their communities with the objective of providing a forum where clients can not only receive emotional support but income generating opportunities as well. “When members don’t come to meetings, we go and find out why. If they’re sick, we can assist them with transport from our collective saving to get to a CTC,” explains a volunteer in Iringa.

“Our group discussions are shifting from sickness to talk of our futures—our dreams,”

There’s a subtle shift occurring in rural communities throughout the country touched by home-based counseling and testing program. Many rural Tanzanians have lived their lives with the expectation of illness and poverty as unavoidable parts of their lives. “Some of us had no strength, no hope before being linked with HBCT services,” said Pamela Chamwela, a volunteer in Dodoma.

Pamela initiated a Peer HIV Group and received training in how to create Saving and Internal Lending in the Community (SILC) by one of the program’s partners. The group began with 10 HIV positive men and women and has been expanded to include 30 members (26 women, five men)—only some of whom are HIV positive.

“We’re not only talking about our CD4 levels anymore!” Pamela laughed. With the help of Pamela and the enthusiasm of members of this group nearing the end of its nine month cycle, every member has had at least one opportunity to benefit from taking a small loan ranging from15,000 Tsh to 300,000 Tsh, investing it in small businesses venture and returning it with interest.

One man in the group has taken out two 300,000 Tsh loans, bought corn husks and sold them to farmers as cattle feed. His profits went to paying school fees for his children and buying pigs and goats. Another woman took a small loan to buy iron sheets for roofing, a mattress and bed. “Our group discussions are shifting from sickness to talk of our futures—our dreams,” says Pamela, who is also HIV positive.

The collective savings from Peer HIV Groups like this one are mobilizing communities to address HIV/AIDS prevention, treatment and care and helping fight stigma along the way. They are providing outreach and services to support the health and education needs of OVCs within communities, and profits gained from income generating activities are slowly changing the day to day lives of their members.

Dodoma’s Peer HIV Group sat in a circle underneath a baobab tree situated alongside a recently erected pen for two dairy cows donated by Heifer International. The members shouted out their plans for small investments for the next quarter: “I’m renting a tractor next season at harvesting time,” “I’m going to buy fabric and sell dresses,”… “I’m going to start a hair salon”… “I’m going to buy more pigs.” When asked how HBCT has changed their lives, one woman stood up and shouted: “Yesterday we had nothing. Today, we have hope.”