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© 2005, CARE USA. All rights reserved. Community-based Approaches for Addressing Barriers to PPTCT Uptake and Follow-Up: Current Experience and Areas for Exploration/Research William C. Philbrick, Director, HIV/AIDS, Emerging & Infectious Diseases, CARE
© 2005, CARE USA. All rights reserved. Outline CARE Background Approach to HIV and AIDS, PPTCT Barriers and Gaps in PPTCT: Lens for Analysis Summary of Lessons Learned from our Programs Areas for Exploration and Research
© 2005, CARE USA. All rights reserved. CARE-Where We Are Today Serving >59 million people in nearly 72 countries Agriculture Education Emergency Health Microfinance Water
© 2005, CARE USA. All rights reserved. HIV and AIDS: Not just a health issue HIV is a development issue; poverty is both a cause and a consequence of HIV and AIDS Commitment to women and girls Address vulnerability to HIV and AIDS Social relationships and marginalization Gender disparities Economic impoverishment Community-based responses
© 2005, CARE USA. All rights reserved. CARE’s PPTCT Programs Kenya Zambia Mozambique Haiti Cameroon
© 2005, CARE USA. All rights reserved. Cascade of PPTCT Services Counseling and testing during ante-natal period Antiretroviral prophylaxis for HIV + mothers and support for safe infant feeding Intra- partum testing and prophylaxis Post partum prophylaxis during B/F Cotrim 1 to all mums and exposed infants at 6 weeks Early testing, diagnosis and delivery of results for infants Access to treatment and care for infected children Ongoing access to ART and follow-up for mothers who need it for their own survival Source: Peter McDermott, CIFF
© 2005, CARE USA. All rights reserved. PPTCT Cascade Those who attend ANC clinic 92% Those who counseled and tested for HIV, CD4 75 % Those who get ARVs (pre- and perinatal) 50% Of 100 HIV+ mothers entering in the program 92 68 34 Source: CIFF analysis based on the presentation by P. Barker at WHO PMTCT consultation meeting Nov 2008 * Excludes the # of infants infected after birth during breast feeding
© 2005, CARE USA. All rights reserved. CARE’s Experience: Most Significant Issues 1) ARV adherence and retention 2) Follow-up of mother and child 3) Early Infant Diagnosis (Dried Blood Spot test) 4) Stock-outs, disruptions of supplies (particularly tests)
© 2005, CARE USA. All rights reserved. Looking at PPTCT as a Value Chain Source: Elaine Abrams, Columbia University; Theresa Betancourt, FXB Center for Health and Human Rights
© 2005, CARE USA. All rights reserved. Communities: Addressing the Underlying Causes Key stakeholder in the Health System…which does not stop at the facility level. Understanding, addressing and leveraging social dynamics and relationships within communities can address the underlying causes of the gaps and attrition in PPTCT programs: Stigma Lack of information Lack of understanding Economics (insufficient funds/poverty)
© 2005, CARE USA. All rights reserved. Communities Add Value to PPTCT Value Chain Facilitate linkages in services (for holistic interventions) Leverage social constructs and social dynamics of individual relationships to improve outcomes Address the psycho-social component that can impede or improve uptake and outcomes Stigma and discrimination Social networks Trust Depression and feelings of isolation
© 2005, CARE USA. All rights reserved. Specific Models Linkages to community-based traditional birth attendants - promoted EID and follow up care; gradual increase in hospital referrals from the community. Pregnant women are better informed about HIV transmission, voluntary counseling and testing (VCT) and PPTCT modalities Linking HIV+ mothers to CBVs of their choice - increased uptake due to enhanced confidentiality. Familiarity and trust based upon community relationships served to improve access. Involvement of male partners in PPTCT- involvement of traditional and local leaders promoted male involvement -accompany their spouses to the health facility for PPTCT services Community-based SAA methodology (Social Analysis and Action) - SBCC strategies can be used to understand and address barriers to PPTCT uptake and loss to follow up, as well as harmful cultural practices. (Siaya: uptake in family planning increased from 38% to 68.7% in one year)
© 2005, CARE USA. All rights reserved. Specific Models (cont.) Social cohesion through group work– Community-based “Mother-to-Mothers-to-Be” groups of women living with HIV (pregnant or nursing mothers) providing psychological supports to one another. Self-selected income generation groups have further increased the level of adherence (levels of trust within groups promoted conversations around adherence, family planning, nutritional counseling). Community-based associations - Provide awareness at the community level on VCT, PMTCT positive living and tracking of hospital defaulters including pregnant, nursing mothers and their children – increased uptake of all services around PPTCT. Facilitated coordination of various interventions. e.g, OVC Committees
© 2005, CARE USA. All rights reserved. For Further Research Community-initiated early childhood development (ECD) and PPTCT integration – Facilitating follow-up Source: Elaine Abrams, Columbia University; Theresa Betancourt, FXB Center for Health and Human Rights
© 2005, CARE USA. All rights reserved. Areas for Further Research Community-based (self-selected) VS&L Groups to generate income to pay for travel and nutritional needs (Kenya, Uganda studies, 2009, 2010) Correlation between maternal depression and service uptake (Knitzer, Theberge, Johnson). Male involvement and increased uptake [ Greater uptake of testing (Homsy, 2006) ; Greater uptake of antiretrovirals (Bajunirwe, 2005) ]
© 2005, CARE USA. All rights reserved. Areas for Further Research Community-based social support networks (recent randomized control studies) Mobile phone technologies to increase uptake (follow-up of mother and child, reduced feelings of isolation, increased adherence) Current randomized control trials show correlation (i.e. Technau et al, 2011) Mobile phones used to not only do follow-up for appointments, but as a means for creating and facilitating social networks, which lead to better outcomes. Better and more accurate information for decision- making (prevent stock-outs, allocation of resources)
© 2005, CARE USA. All rights reserved. Thank You! email@example.com firstname.lastname@example.org
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