Results

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Programs providing family-centered support to most-at-risk populations (MARP) and their children: a qualitative study Lora Sabin and Jennifer Beard Department of International Health, Boston University School of Public Health Boston, Massachusetts, USA Methods Introduction • Partners • In each country, we partnered with a nNGO providing services to one or more MARP populations and their children: • Ukraine: HealthRight International, Ukraine office, whose focus populations are HIV+ pregnant women, new mothers, former and active drug users, and street and other-at-risk children and youth • Viet Nam: Family Health International, Viet Nam, which supports a broad range of programs to people living with HIV (PLHIV) and their family members, including children • Zambia: Tasintha, which provides services to FSW and their children • In 2010, for a project on OVC (orphans and vulnerable children), we conducted a literature review on services for children of MARP (most at risk populations) and found very little information;1 MARP • injection drug users (IDU) • female sex workers (FSW) • men who have sex with men (MSM) • To address this knowledge gap, we identified non-governmental organizations (NGOs) providing services to MARP and their children in Eastern Europe, South East Asia, and Southern Africa • This poster documents 3 programs serving these highly vulnerable parents and children Background: country context • Data collection • In each country, we visited program sites and conducted qualitative in-depth interviews with program staff, implementing partners, and donors • We used a semi-structured question guide, with questions addressing: the genesis and subsequent changes in programming for children of MARP; services provided; population needs and vulnerabilities; children’s sources of resilience; program successes and challenges; future plans • Analytic methods • Interview notes were analyzed using a grounded theory approach • We summarized thematic characteristics, patterns, and relationships. • We conducted the research in 3 countries with very different HIV epidemics and varying adult risk group profiles: • Ukraine: overall adult HIV prevalence = 1.3%; epidemic is concentrated among male and female IDU, prisoners, FSW, street youth, and MSM • Viet Nam: overall adult HIV prevalence = 0.4%; male IDU and their female partners, male and female SWs, and MSM are especially vulnerable • Zambia: overall adult HIV prevalence = 13.5%; though concentrated within vulnerable groups, HIV is also widespread throughout the general population Hoan Kiem Lake, Hanoi Results • Tasintha • Program details • Outreach in bars and hotels and on streets • Provide 200 female sex workers with professional training, health care, and harm reduction services per year • Provide women with options for economic security outside of sex work • Provide children of sex workers with education, health care, and a path out of poverty • Advocacy for human rights and protection • Vulnerabilities of children • Approximately 60% of the women currently supported by Tasintha are HIV positive • Tasintha staff estimate that 80% of the women in their program have 1 to 5 children, with most having 3 or less • Women may live with other SW. When there are 3 or more women living together they can alternate work and child care • When women live alone or with only one other adult, they have a harder time covering child care • Children and infants then may be left in the home, at a local shop, in a nearby drainage ditch while the mother is working • As children grow up they may be subjected to stigma from neighbors over their mother’s work and end up resenting their mother • May leave school or be pulled into child labor • Service approach for women and children • Access to temporary cash assistance • Income generating activities and skills training • Primary health care services • Drug and alcohol counseling and referrals to rehabilitation facility • Psychological counseling • Peer mentoring • Ongoing educational assistance in many cases through tertiary education • Succession planning (oversee child placement if mother dies) • Reunite child with family or place in foster care if appropriate • Place child in boarding school if family placement not appropriate • Nutritional supplements (when funding is available) • Home visits (when funding is available) • Partial primary care clinic on site staffed by a full-time nurse and a doctor 2 days per week. • Referrals to University Teaching Hospital (payment and transport covered by Tasintha) • HealthRight International • History and overview: MAMA+ for IDU • Background: infant abandonment very high among pregnant women & new mothers with an HIV+ diagnosis • Original MAMA+ program set up in 2005 to reduce infant abandon-ment (program helped ensure that 95% of enrollees kept their infants) • MAMA+ for IDU established in 2008 with special focus on IDU • Main program goals: early identification of HIV+, pregnant IDU; provision of support to families; referrals for needed medical and social assistance; peer support for enrollees; advocacy among state and private sector organizations to support piloted approaches • Needs & vulnerabilities of HIV+ IDU and their children • Mother to child HIV transmission is high; 16.5% of new HIV infections in Ukraine are in children of former & current female IDU • IDU often avoid ANC care, receive HIV diagnosis late in pregnancy, face difficulties accessing rehab services and substitution therapy (ST) • Providers reluctant to give ART to IDU and ST to pregnant IDU • IDU and HIV+ women often advised to abort by providers & family • Residential rehab facilities rarely let women to bring infants/children • Under Ukrainian law, child services may remove child from IDU • Women may have older children living with family & in orphanages • Female IDU & children often live on streets for 5 years or longer • Service approach & detail • Specific services provided: support via home visits; counseling with families; harm reduction and drug/alcohol counseling; help accessing residential rehab facilities & ST, peer support groups with focus on female IDU, legal assistance; referrals for additional medical and social assistance (antenatal care, ART, PMTCT, infant & child care) • Additional services via linked family-centered programs: play rooms, day care, nutrition support, disclosure counseling, outreach, drop-in centers • Family Health International (FHI) • Background and overview • Poor access to services in PLHIV, the majority of whom are MARP • In 2005, FHI began funding services to PLHIV using a continuum of prevention and care approach centered on HIV out-patient (OPC) services embedded in district hospitals with linked community and home-based care (CHBC) teams & PLHIV support groups • Services were extended to children of clients beginning in 2006 • Adult clients served in home-based care (HBC) programs range from 30-80% of the OPC population, with PLHIV in rural areas typically more interested in CHBC services • As of March 2011, CHBC teams reached a range of 200-600+ adult clients, depending on catchment area, and from 150-300 children • Nationwide, FHI helped fund services at 24 clinics, reaching 11,563 adult clients and 4,886 children (including family members, a total of 31,163 individuals were reached with umbrella care services) • Population needs & vulnerabilities • Most OVC in Vietnam are the children of MARP • Most IDU are male; most SW are female • Most typical family scenario: father (an IDU) is absent and child(ren) is being raised by the mother • The proportion of HIV-positive children is 8-10% in most of the programs • 2-5% of children being served by FHI programs are double orphans; 7-12% are single orphans • Migrant families in the south lack adequate shelter • Although better than in the past, children affected by HIV may still face challenges going to school due to stigma among teachers & parents; children often must attend school separately from other children (attend only in the morning, sit in separate rooms, etc) • Once a HIV-positive adult or child is registered at a clinic, services are automatically available to all family members. • Service approach for families • Comprehensive Case Management • Baseline assessment of care needs for whole family and each child • Care plan • Children visited at home at least once per month • Quarterly meetings to mobilize support and enroll families in social welfare schemes • 24 Continuum of Care sites across 9 provinces • Approach: comprehensive case management social work model, using teams (social workers, psychologists, doctors, nurses, lawyers); teams help women identify path to keep mother and baby together Box 1. Close-up on children: personal stories Impact of ST on parenting in Ukraine: A social worker explained: “A client comes here every day with her baby to take her ST. It sometimes makes me feel sad to see that she is still chained to a drug. But I also regularly see her shopping for fresh fruit at the market on the corner, and I am happy to know that the [ST] is what allows her to be healthy and a good mother.” Successful ART in QuangNinh, Viet Nam: At one clinic, all 22 children on ART are healthy, with no deaths. However, many arrive very ill. One came at 9 months, weighing 4.5 kilos. Staff explained: “This child had been referred to the Central Pediatric Hospital in Hanoi, but there was nothing there for her. She was brought here, given ART, and is now thriving.” Another case: “He lived with his grandparents for some time, but after the grandfather died, the boy became aggressive. He came to the OPC and was able to receive help with school fees….We (the home-based care team) visited him at home to provide him with ART. The child now is more open and happy, attends school, and is a regular OPC client.” Supporting tertiary education:Tasintha typically supports women for 2 years, but will pay school fees longer, and try to provide youth with tertiary training. Impact of long term support: 1 former child client finishing the 4th year of a MBBS; 2 currently working as medical officers; 1 studying nutrition at the University of Zambia; 1 working in hotel catering in Lusaka. Keeping families together in Ukraine: A social worker at the Left Bank Center: “Many centers will not accommodate children who then may end up with a family member or in an institution or on the street. One of our clients was very successful staying clean for 2 years, but then she started using again. She couldn’t find a place where she could go with her child and he almost ended up on the street. We intervened and she was able to bring him with her.” Attending school in Hanoi, Viet Nam: Pagoda Club staff met a 14 year-old who had left school to work. “We intervened and talked to the parents, persuading them to let the child go to school the next year. This worked because we focus on the child-adult relationship. We organized a small group of families and talked about the importance of caring for each other and maintaining strong relationships. It was successful and the families really liked it.” Helping sex worker mothers build skills and find work in Zambia:One woman had been selling sex for a year to pay her son’s school fees. After joining Tasintha, the program paid his fees and she enrolled in an income generation project. When she became pregnant, she was given leave and support. She has been with Tasintha for 3 years. Overcoming stigma in Viet Nam: A 15 year-old orphan was living with an aunt with psychosocial issues. Program staff noted the child’s distress: “When we tried to talk to her, she wouldn’t respond. We persisted and discovered that her friends wouldn’t play with her. So the OPC doctors met with her school principal and teachers and we organized a community event to explain HIV transmission. Teachers attended a training course offered by a health clinic. The OPC also invited the child to share her experiences at some events. People began to understand and help her. ….Now she is doing well and in school.” Box 2: Focus on stigma Ukraine: At the Left Bank Center for HIV+ Children and Youth, case management teams include social workers who are former clients, HIV-positive, and often in recovery: “90% of our success can be seen in our employment of HIV+ clients, which has helped break down other clients’ sense of stigma.“ Noted one social worker: “Being able to provide them with my example of changing my life seems to make the possibility more real to them.” Viet Nam: Interviewees claimed HIV-related stigma has declined but still affects clients and program effectiveness. Stigma may prevent children from attending school with other children, isolate them in communities, exacerbate psychosocial vulnerabilities related to HIV infection in the family, and lead parents to refuse home-based services from fear of disclosure of HIV status. HIV+ parents have refused to let HIV- children attend program activities for fear of stigma. Staff asserted: “Children are often isolated. This is a problem we cannot solve.” Zambia: Children of FSW often face stigma in their communities because of their mother’s SW. According to program staff, women may put off telling children about their HIV infection or about their SW. Children learn about it via neighborhood or family gossip, which deepens their stigma. Conclusions & Recommendations • Promising approaches: • Family-centered approach to MARP and their children • Advocacy for vulnerable adults and children at center of all 3 programs • Media campaigns focused on reducing stigma in general population • Partnerships with government, faith and community-based organizations, other NGOs • Health care referral networks (including HIV-related services) • Program limitations/challenges: • Ukraine: poor access to PMTCT/ART; rules preventing clients from bringing children to rehab centers; • Viet Nam: nonational guidance on child protection; weak child case management, protection mechanisms, child abuse prevention/care; HIV-related stigma; poverty and family instability from parental drug addiction • Zambia: temporary and erratic funding streams; weak government support for civil society organizations • Priorities for future research: • Evaluation of existing programs that address the needs and vulnerabilities of MARP and their families • Analysis of successes and failures • Potential for adaptability and replication • Mixed methods primary research on children and MARP parents with a focus on needs of children and family/household • In-depth qualitative research following on quantitative studies already initiated by organization • Example: research on street youth in Ukraine to illuminate factors leading to life on the streets &high HIV prevalence • Costing and cost-outcome studies • Digital archiving and qualitative analysis of detailed client social work and other narrative records Acknowledgements The USAID | Project SEARCH, Orphans and Vulnerable Children Comprehensive Action Research (OVC-CARE) Task Order, is funded by the U.S. Agency for International Development under Contract No. GHH-I-00-07-00023-00, beginning August 1, 2008. OVC-CARE Task Order is implemented by Boston University. Our sincere thanks to the program personnel who partnered with us on this project. In Ukraine: Halyna Skipalska, Sara Hodgdon, Olha Martynyuk; In Viet Nam: Kimberly Green, Phan Tu Phuong; In Zambia: Nkandu Luo, Clotilda Phiri.