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
• 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
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
Data collection
Background: country context
•
• 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
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.
Results
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 abandonment (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
Tasintha
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)
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
• Mother to child HIV transmission is high; 16.5% of new HIV
HIV positive
infections in Ukraine are in children of former & current female IDU
• Tasintha staff estimate that 80% of the women in their program have 1 to
• IDU often avoid ANC care, receive HIV diagnosis late in pregnancy,
5 children, with most having 3 or less
face difficulties accessing rehab services and substitution therapy (ST)
• Women may live with other SW. When there are 3 or more women living
Population
needs
&
vulnerabilities
• Providers reluctant to give ART to IDU and ST to pregnant IDU
together they can alternate work and child care
•
Most
OVC
in
Vietnam
are
the
children
of
MARP
• IDU and HIV+ women often advised to abort by providers & family
• When women live alone or with only one other adult, they have a harder
•
Most
IDU
are
male;
most
SW
are
female
• Residential rehab facilities rarely let women to bring infants/children
time covering child care
• Most typical family scenario: father (an IDU) is absent and child(ren) is
• Under Ukrainian law, child services may remove child from IDU
being raised by the mother
•
Children
and
infants
then
may
be
left
in
the
home,
at
a
local
shop,
in
a
• Women may have older children living with family & in orphanages
• The proportion of HIV-positive children is 8-10% in most of the
nearby drainage ditch while the mother is working
• Female IDU & children often live on streets for 5 years or longer
programs
• As children grow up they may be subjected to stigma from neighbors
Service approach & detail
• 2-5% of children being served by FHI programs are double orphans; 7over their mother’s work and end up resenting their mother
12% are single orphans
• Approach: comprehensive case
• May leave school or be pulled into child labor
• Migrant families in the south lack adequate shelter
management social work
Service approach for women and children
•
Although
better
than
in
the
past,
children
affected
by
HIV
may
still
face
model, using teams (social
• Access to temporary cash assistance
challenges
going
to
school
due
to
stigma
among
teachers
&
parents;
workers, psychologists,
children often must attend school separately from other children (attend • Income generating activities and skills training
doctors, nurses, lawyers);
only in the morning, sit in separate rooms, etc)
• Primary health care services
teams help women identify
• Once a HIV-positive adult or child is registered at a clinic, services are • Drug and alcohol counseling and referrals to rehabilitation facility
path to keep mother and baby
automatically available to all family members.
• Psychological counseling
together
Service approach for families
• Peer mentoring
• Comprehensive Case Management
• Ongoing educational assistance in many cases through tertiary education
• Specific services provided: support via home visits; counseling with
• Baseline assessment of care needs for whole family and each child
• Succession planning (oversee child placement if mother dies)
families; harm reduction and drug/alcohol counseling; help accessing
• Care plan
residential rehab facilities & ST, peer support groups with focus on
• Reunite child with family or place in foster care if appropriate
• Children visited at home at least once per month
female IDU, legal assistance; referrals for additional medical and
• Place child in boarding school if family placement not appropriate
social assistance (antenatal care, ART, PMTCT, infant & child care)
• Quarterly meetings to mobilize support and enroll families in social
• Nutritional supplements (when funding is available)
welfare schemes
• Additional services via linked family-centered programs: play rooms,
• Home visits (when funding is available)
day care, nutrition support, disclosure counseling, outreach, drop-in
• 24 Continuum of Care sites across 9 provinces
• Partial primary care clinic on site staffed by a full-time nurse and a
centers
doctor 2 days per week.
• Referrals to University Teaching Hospital (payment and transport
Box 1. Close-up on children: personal stories
covered by Tasintha)
Impact of ST on parenting in Ukraine: A social worker explained: “A client comes here every day with her baby to take
Needs & vulnerabilities of HIV+ IDU and their children
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 Quang Ninh, 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.”
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.
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: no national 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