i EXTERNAL ASSESSMENT OF THE ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION CALL-TO-ACTION PILOT PROGRAM DATE: NOVEMBER 27, 2007 (FINAL) This publication was produced for review by the United States Agency for International Development. It was prepared by Helene Rippey, Herbert Kadama, Ann McCauley and Mary Namubiru ii EXTERNAL ASSESSMENT OF THE ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION CALL-TO-ACTION PILOT PROGRAM Contract number: GS-23F-8012H Monitoring and Evaluation Management Services (MEMS) Project 3rd Floor, Cotton House 15 Clement Hill Road P.O. Box 6959 Kampala, Uganda Tel: 256-41-253978/9 Fax: 256-41-253980 Email: info@mems.co.ug Management Systems International Corporate Offices 600 Water Street, SW Washington, DC 20024 DISCLAIMER The author’s views expressed in this publication do not necessarily reflect the views of the United States Agency for International Development or the United States Government. iii Acknowledgements The assessment team could not have completed this assessment without the cooperation and assistance of a large number of people. First of all we wish to thank the USAID Uganda team Sereen Thaddeus and Rhona Walusimbi who, despite their many other commitments, provided advice and guidance throughout the exercise. The EGPAF staff provided us with outstanding support – first releasing a key staff member, Mary Namubiru, to work with us, then making time to meet with us individually, and finally, taking time to review drafts, correct misunderstandings, and answer dozens of detailed questions. Particular thanks go to EGPAF Country Director, William Salmond and Program Manager Edward Bitarakwate. We are also grateful for the support and cooperation of the many Ministry of Health personnel who took time to meet with us. We especially appreciate the interest and support of Dr. Elizabeth Madraa, Program Manager of the National AIDS Control Program and Dr. Saul Onyango, the PMTCT Program Coordinator. Leaders and staff at National and District Hospitals, District Health Service offices, and health centers were extremely helpful and cooperative with our team’s many requirements – interviews, observations, and focus groups. The staff of MEMS (Monitoring and Evaluation Management Services Project) provided logistical and administrative support to the team, including working space and coffee. We especially thank Augustine Wandera for his technical support and guidance. iv Table of Contents Acknowledgements .......................................................................................................................iii Table of Contents ..........................................................................................................................iv Executive Summary ....................................................................................................................viii 1 INTRODUCTION.................................................................................................................. 1 1.1 BACKGROUND ...........................................................................................................1 1.2 EVALUATION OBJECTIVE, DESIGN AND METHODOLOGY ....................................3 2 FINDINGS.............................................................................................................................. 5 A. To what extent has EGPAF achieved its overall goal and results in Uganda? ...........5 B Factors Contributing to or Hindering Achievement of Goals and Results? ............ 20 C Did the CTA project yield any unintended results, whether positive or negative? 23 3 LESSONS LEARNED ......................................................................................................... 24 4 RECOMMENDATIONS..................................................................................................... 27 5 APPENDICES Appendix A Evaluation Scope of Work...................................................................... i Appendix B Stakeholders Meeting (10-May-07) Participant List............................. ii Appendix C Key Persons Interviewed...................................................................... iii Appendix D Interview Guides and Tally Sheets.........................................................v Appendix E Focus Group Discussion Report........................................................... ix Appendix F Table of Targets and Achievements ................................................... xix Appendix G Comparison Tables...............................................................................xx Appendix H List of Training-Related Materials Training- ................................... xxiv Appendix I EGPAF/Uganda Organizational Chart ...............................................xxv Appendix J EGPAF Sub-Grantee List ................................................................. xxvi Appendix K Papers Written by EGPAF/Uganda Staff ........................................ xxvii Appendix L Data Tables..................................................................................... xxviii Appendix M Tally Sheet...................................................................................... xxix Appendix N EGPAF –Time line of milestones....................................................... xlii v List of Tables Table 1: EGPAF Scale-up of PMTCT Services.............................................................................. 5 Table 2. EGPAF Achievement of Targets ....................................................................................... 7 Table 3. Quality Related Findings from Focus Group Discussion ................................................. 9 Table 4. 2006 Integration Indicators (Cumulative) ......................................................................... 15 Table 5. EGPAF - Timeline of Program Milestones.....................................................................xlii List of Figures Figure 2. PMTCT Service Data Cascade in EGPAF Supported Sites 2003/4 to 2005/6................. 6 Figure 3. EGPAF Contribution to Total Services Access................................................................ 7 Figure 4.EGPAF Performance Compared to Other USG Implementing Partners........................... 8 vi List of Acronyms ACP AIDS Control Program of MOH AIDS Acquired Immune Deficiency Syndrome AIM AIDS/HIV Integrated Model District Program ANC Antenatal Care ART Antiretroviral Therapy ARV Antiretroviral BCC Behavioral Change Communication CA Cooperative Agreement CBO Community Based Organization CDC Centers for Disease Control and Prevention CHBC Community Home Based Care CSO Civil Society Organization CTA Call to Action Project DAC District AIDS Committee DAT District AIDS Team DDHS District Director of Health Services DDP District Development Plan DNA Deoxyribonucleic Acid EGPAF Elizabeth Glaser Pediatric AIDS Foundation FBO Faith Based Organization FSG Family Support Groups FP Family Planning FY Fiscal Year GOU Government of Uganda HBC Home Based Care HC Health Center HCT HIV Counseling and Testing HIV Human Immune – Deficiency Virus HMIS Health Management Information System HSD Health Sub-District HW Health Worker IEC Information, Education Communication vii JCRC Joint Clinical Research Center Lab Laboratory M&E Monitoring and Evaluation MEMS Monitoring and Evaluation Management Services MIS Management Information System MOH Ministry of Health MOLG Ministry of Local Government MSI Management System International NGO Non Governmental Organization OI Opportunistic Infections OVC Orphans and Vulnerable Children PCR Polymerase Chain Reaction Test for HIV PEPFAR President’s Emergency Plan for AIDS Relief PHA Persons Having AIDS PMP Performance Monitoring Plan/Performance Management Plan PMTCT Prevention of Mother to Child Transmission PSS Peer Psycho-Social Support PTC Post Test Clubs RCT Routine Counseling and Testing SOW Scope of Work STI Sexually Transmitted Infection TASO The AIDS Support Organization TB Tuberculosis TOT Trainers of Trainers UAC Uganda AIDS Commission UBOS Uganda Bureau of Statistics UDHS Uganda Demographic and Health Survey UNICEF United Nations Children Fund UPHOLD Uganda Program for Human and Holistic Development USAID United States Agency for International Development USG United States Government VCT Voluntary Counseling and Testing WHO World Health Organization viii Executive Summary USAID funded the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) Program to assist the Ministry of Health (MOH) of Uganda to introduce and expand high-quality prevention of mother-to-child transmission of HIV (PMTCT) services. In January 2003 EGPAF/Uganda began implementing PMTCT services through the global USAID funded Call to Action Project (CTA). The project received a total of $9,505,000 in USAID Mission funds and $2,004,685 in USAID Core funds. Between 2000 and 2007 EGPAF used a total of $2,029,350 in private foundation funds in support of the Uganda project. In April 2007, as the project was ending, the USAID/Uganda mission requested a final assessment in the following key areas: 1. EGPAF’s achievement of overall goals and results 2. Factors contributing to and hindering achievement of results 3. Unintended positive or negative results 4. Opportunities/constraints for future support for integrating PMTCT with HIV care and treatment services for adult, as well as pediatric patients, with reproductive health /FP and ANC/ maternal health services. A four-person assessment team conducted the evaluation in May and June 2007. Data was collected through document review, key informant interviews, focus group discussions, site visits, observations, and aggregated data comparison. Findings To what extent did EGPAF achieve its overall goals and results in Uganda? EGPAF’s achieved most of the project’s overall goals and results. Routine monitoring data showed that the number of sites supported and all cascade indicator numbers (number counseled, tested, receiving prophylaxis, etc.) almost doubled each project year. Review of MOH data showed that the project’s contribution to total service coverage in the country tripled over three years from 2004-2006, and the proportion of support to the national program from EGPAF increased from 25% in 2004 to 51% in 2006. In comparing EGPAF performance with an aggregated total of all other USG supported PMTCT implementing partners, EGPAF generally matched or performed better on most cascade indicators. However, a key quality indicator, “proportion of babies exposed to HIV receiving prophylaxis”, remained low for all partners in Uganda for a variety of systemic reasons. EGPAF supported the MOH approach of integrating PMTCT into MCH as “part and parcel” of existing services. This avoided the perception of PMTCT as another vertical program and facilitated acceptance and success. EGPAF managed to integrate families and communities into HIV care, support and treatment through establishment of Family Support Groups at selected sites. These groups provided psychosocial support and promoted testing for children and partners, encouraged use of family planning, supported follow up of families to ensure that ARVs are adhered to, and facilitated access to ART. ix What factors contributed to and hindered achievement of results Among the factors contributing to achievement of results was that as a program, EGPAF had a single focus on PMTCT services and the program worked within the existing health system and services. EGPAF’s management model contributed to achievement of project objectives. Despite having a small central team, EGPAF worked through structures already in place in the country whenever possible using grants to district local government health services and support to central MOH. The USAID cooperative agreement was generally flexible and allowed for responsive programming. EGPAF was also able to fill urgent gaps (such as salary support to fill vacant positions in PMTCT sites) through private foundation funding when there were contractual constraints on USAID funds. EGPAF introduced PMTCT services to all staff at the same time and trained health workers worked as a team. Better performing sites had a higher proportion of total facility health workers trained, an on-site ARV clinic, family support groups, and, same day HIV test results. Clients felt that health workers were less rude (than before or at other facilities); health workers tended to express more pride in their work and complained less about work load; and the health workers working in PMTCT services felt more to be part of a team. EGPAF provided support to the MOH and district structures to increase technical capacity of health workers through training, follow-up, support supervision, monitoring and evaluation, development of training materials, policy documents, job aides, and patient educational materials. Threats (especially in drugs, supplies, and human resources) were anticipated and addressed early. Most of the constraints were systemic (stock outs of medicines and commodities, weak infrastructure of the health system especially maternity care and human resource constraints) and beyond EGPAF’s mandate. Did the CTA project yield any unintended results, whether positive or negative? What factors were such unintended results attributed to? A number of unintended results were observed. Introduction of PMTCT in sites increased the availability and utilization of HIV testing. There was evidence that health workers’ improved skills in PMTCT improved quality of delivery of HIV/AIDS related services. However, PMTCT increased pressure on weak maternity services. Emphasis on PMTCT and HIV overshadowed routine MCH and other basic care for the 94% of the population who were HIV-negative. Though early infant HIV diagnosis supported early treatment and care for HIV positive children, this may have put HIV-negative children at greater risk of morbidity and mortality due to poor replacement feeding practices and simultaneous discontinuation of cotrimoxazole prophylaxis. Lessons learnt o PMTCT services cannot be optimized unless the health system foundations are strengthened. o Increasing PMTCT coverage requires a dependable supply of test kits and drugs. 2 o PMTCT has greater coverage than ART services and the result is insufficient linkages to ART services. o Provision of prophylaxis and follow-up of the exposed baby are the weakest links in the PMTCT cascade. o Integrating FP into PMTCT may not result in a strong FP program. o Multiple approaches are needed to reach men with HIV information, testing, and services. o Small incentives can bring big results. o Scheduling services around client availability can increase uptake. o There are weaknesses in the system in identifying problems and solutions. o Formal collaboration with organizations offering complementary HIV services helps in integration and maximizes uptake of linked services. Recommendations For USAID o Support to personnel and commodities are key issues in the success of the PMTCT program though USAID does not support it. USAID should support these key elements in future programs. o Government health systems are still weak especially at implementation level; any effort to improve PMTCT service provision must address the fundamental weakness in government implementation before PMTCT services can be maximized. There is need to expand care and treatment services, make them more convenient, and provide them at affordable cost. o Efforts should be made to ensure adequate levels of collaboration with organizations offering support services such as nutritional support components and income generating activities, early in PMTCT program implementation. o Emphasis should be laid on follow-up with ARV prophylaxis for babies since this remains the weakest programmatic link in the PMTCT o Support to PMTCT programs should emphasize innovation of effective interventions that promote greater male participation o There is need to include the private (for-profit) sector in programming as this is necessary for improvement in coverage, quality and reporting of PMTCT services. For EGPAF o Continue to help improve the system for reporting and replenishing stock outs. o Develop mechanisms and activities to answer questions about program effectiveness. Page 1 1 INTRODUCTION USAID funded for five years the Elizabeth Glaser Pediatric AIDS Foundation Program (EGPAF) to assist the Ministry of Health (MOH) of Uganda to introduce and expand high￾quality prevention of mother-to-child transmission of HIV (PMTCT) services. In April 2007, the USAID/Uganda mission requested an assessment to determine what had been learned from the EGPAF PMTCT Program about the design, management, and delivery of PMTCT services to inform future programming in this area. 1.1 BACKGROUND 1.1.1 The Development Problem and USAID’s Response Vertical transmission of HIV from mother to child is a particularly urgent and growing problem in SSA. UNAIDS reported that more than 76% of all the women living with HIV/AIDS were found in this region and it was further estimated that 76% of people living with HIV/AIDS (PLWHA) aged 15 to 24 years in SSA were female. In 2004, more than 640,000 children were infected with HIV worldwide and virtually all of them through mother to child transmission. Almost 90% of the children were in SSA. The high rates of mother to child transmission in this region were due to high HIV prevalence among women of reproductive age, high fertility rates and ineffective nationwide interventions to prevent mother to child transmission. Uganda is a sub-Saharan country of 25.7 million people with 85 percent of the population living in rural areas. The 2005 Uganda HIV/AIDS Sero-Behavioral Survey (UHSBS) has documented HIV prevalence at a proportion of 6.4% for those aged 15-49 years. While Uganda achieved notable success for its efforts to reduce prevalence significantly from its epidemic peak of 25-30% from antenatal surveillance data in the 1990’s, other data from the UHSBS also estimate 100,000 incident infections per annum. Some of these infections are due to vertical transmission. The UHSBS states that 7.5% of women 15-49 are HIV infected and these women are a subset of the estimated 1-1.2 million pregnancies in Uganda per year. With an average transmission rate of 30% it is estimated that about 20,000 children are infected with HIV per year through mother to child transmission (MTCT). This is the primary cause of HIV infection among children less than 15 years. Uganda’s Ministry of Health (MOH) initiated a PMTCT pilot program in 2000. Phase 1 from 2001-2005, focused on scaling up basic PMTCT services to all districts in Uganda. This was achieved by December 2005. Phase II, from 2006-2010 focuses on the revised national PMTCT policy that was officially launched in September 2006 and supports the holistic implementation of the four-pronged UNAIDS PMTCT strategy: 1) primary prevention 2) family planning 3) provision of antiretroviral (ARV) prophylaxis and 4) care and support). Phase II also included the important need for consolidation of services to increase coverage and uptake particularly to lower level health centers. Despite the relative success of Phase 1 for Uganda’s PMTCT initiatives, overall PMTCT coverage in the country remained low. Currently, PMTCT services remain limited to district hospitals where close to 100% offer PMTCT services and Health Centers IVs (HC4) where nearly 75% offer PMTCT services. To date, however, only 10% of Health Center IIIs (HC3) which are closer to the rural communities of Uganda where the majority of the population lives offered PMTCT services. Page 2 This exposed one of the greatest challenges in successful implementation and uptake of the PMTCT initiatives in Uganda. That same year, the United States government announced the President’s Emergency Plan for AIDS Relief (PEPFAR) which was a five-year, $15 billion, multi-faceted approach to combating HIV around the world. Building upon the original goal of the President’s Mother￾Child HIV Initiative, PEPFAR aimed to support at least 80% of pregnant women with PMTCT services, and reduce MTCT by 40 percent in each of PEPFAR’s 15 focus countries through simple, effective PMTCT interventions which included the provision of: • Routinely recommended rapid HIV counseling and testing in antenatal and maternity settings; • Combination short-course antiretroviral (ARV) prophylaxis for mother and infant and antiretroviral treatment (ART) for eligible mothers; • Counseling and support for infant feeding; • Link with wraparound services, such as nutrition, family planning services for women with HIV, and microeconomic activities; and • Strong links to care, treatment and support services. • Creating opportunities to link PMTCT with related initiatives such as the President’s Malaria Initiative.1 1.1.2 The EGPAF PMTCT Program in Uganda The EGPAF goal was to eradicate pediatric AIDS. The Foundation developed a program called the Family Care Model that integrated PMTCT with existing antenatal care (ANC) services. By the commencement of the project under evaluation in 2002, EGPAF had strengthened the national MOH PMTCT program through support to 60 health care delivery sites in 19 out of 56 Ugandan districts using the MOH supported approach of integrated PMTCT/ANC services. In June 2002, the US Government launched the President’s Initiative for PMTCT. Under this initiative, the Call to Action Project (CTA) - a five-year, multi-country central Cooperative Agreement (CA) between USAID and EGPAF - was launched. The CTA cooperative agreement included support to Uganda and up to ten other countries under a global $100 Million ceiling. In January 2003 EGPAF/Uganda was to begin implementation through the CTA Central CA but funds did not become available to the project until the end of the year. In September 2003, USAID Uganda added field support funding and activities were able to begin in earnest. In 2004 most USG assistance to HIV programming was shifted to the President’s Emergency Plan for AIDS Relief (PEPFAR) mechanism, and this applied to EGPAF and the CTA Cooperative Agreement in general. The project description in the Cooperative Agreement required EGPAF to accelerate nationwide access to PMTCT services through ANC and maternities. To achieve this, EGPAF was to support the entire PMTCT service delivery system in the country. In Uganda, the project’s PMTCT programming provided key inputs at the central level and assistance to 1 PEPFAR. Prevention of Mother to Child Transmission, 2007; www.PEPFAR.gov CTA Project Objectives 1. Increasing Access to PMTCT Services 2. Expanding Care and Support Services 3. Facilitate Knowledge Sharing and Training 4. Document Successful Models Page 3 district health systems to provide VCT, ARV prophylaxis for PMTCT, psychosocial support, community mobilization efforts, training of personnel, employment of counselors and laboratory technicians, improvement of laboratory facilities and counseling rooms, development of management information systems, strengthening of MCH/FP, and integration of PMTCT and other services. The CA also required EGPAF to give its sites flexibility to design and operate programs customized to their local needs and realities. Thus EGPAF supplied commodities during stock outs, facilitated transportation of blood samples to ART testing laboratories, additional space by remodeling clinics, and salary support of MOH staff when needed. EGPAF worked closely with other PMTCT partners to coordinate expansion. As of March 31, 2007, EGPAF/Uganda had received a total of $9,505,000 in USAID Mission funds and $2,004,685 in USAID Core funds. Between 2000 and 2007, EGPAF added a total of $2,029,350 from other funding sources (see Figure 1). These funds primarily supported the Ministry of Health PMTCT monitoring and evaluation unit, maintained a “buffer stock” of supplies and drugs, supported salary and facility renovation and provided grants for the International Leadership Award (ILA) for research2 . 1.2 EVALUATION OBJECTIVE, DESIGN AND METHODOLOGY 1.2.1 Evaluation objectives The general objective of the evaluation was to assess the degree or level of effectiveness of the EGPAF programs. This included identifying and documenting the strengths and weakness of the program. The specific objectives were to: 1. Assess the factors that facilitated and/or hindered achievement of planned results 2. Assess if and how the CTA project yielded unintended results 3. Identify opportunities/constraints for future support for integrating PMTCT with HIV care and treatment services 1.2.2 Evaluation Questions Assessment questions were approved at a meeting of key stakeholders (see Appendix A&B) as follows: 2 The ILA grantee in Uganda is Dr. Philippa Musoke of Makerere University. From May 2003 to June 2007 Dr. Musoke was awarded a total of $550,000. The ILA grant is managed at EGPAF headquarters in the US 0 500,000 1,000,000 1,500,000 2,000,000 2,500,000 3,000,000 3,500,000 4,000,000 4,500,000 2000/2 2003 2004 2005 2006 2007 Other sources USG funds Figure 1: Sources of EGPAF Funding Annually Page 4 1. To what extent did EGPAF achieve its overall goal and results in Uganda? This involved assessing the factors that facilitated and/or hindered its achievement of planned results and how the CTA design, and implementation by EGPAF Uganda affected the following: • Service Delivery – quality, access, utilization, integration. • Training and Supervision – Impact on national policy and systems for training, supervision and capacity building; training linked to service delivery. • Efforts to integrate PMTCT with HIV care and treatment services for adult, as well as pediatric patients, with reproductive health /FP and ANC/ maternal health services. • Support to district and facility level monitoring and evaluation systems to capture and report necessary information. • EGPAF project management with specific focus on decentralized approach, grants to districts and associated strengths and challenges. • Relationships with MOH and other key-implementing partners 2. Did the CTA project yield any unintended results, whether positive or negative? What factors were such unintended results attributed to? 3. What opportunities/constraints existed for future support for integrating PMTCT with HIV care and treatment services for adult, as well as pediatric patients, with reproductive health /FP and ANC/ maternal health services? 1.2.3 Design and Methods The four-person assessment team was engaged by MEMS and led by Ann McCauley, from the USAID East Africa Regional Office. Other members included two independent consultants: Dr. Herbert Kadama, an HIV specialist and Helene Rippey, MS/CNM. In addition, a senior EGPAF staff member, Dr. Mary Namubiru, participated on the team. At the team’s request, MEMS contracted Wilsken Agency to implement and report finding of the focus group discussions. This fieldwork was conducted in May 2007 and the report was prepared in June 2007. The assessment was carried out in a participatory manner with input from the MOH, EGPAF and other stakeholders. The team originally planned to conduct fieldwork in both selected EGPAF and matched “comparison districts”. Because of the difficulties inherent in this approach, the team was discouraged by the stakeholders from conducting fieldwork in comparison districts. The stakeholders’ requested the assessment team to compare instead better and poorer performing sites in selected EGPAF districts. The assessment team was encouraged to conduct macro level comparisons using existing data sources. The assessment team used a combination of methods to collect the information on which this report is based. Data collection forms and tally sheets can be found in Appendix D. Focus Group Discussion Report can be found in Appendix E. DATA COLLECTION METHODS USED A. Review of documents B. Interviews with key informants C. Observations D. Focus group discussion Page 5 2 FINDINGS The findings were organized along evaluation questions rather than by methodology in order to bring multiple approaches to bear on each question without allowing one source to dominate the process. A. To what extent has EGPAF achieved its overall goal and results in Uganda? A.1 Increasing Access to and Quality of Services The team reviewed both project monitoring data and national M&E data to assess whether EGPAF effectively and rapidly scaled up services in Uganda through training, technical assistance and logistical support. Table 1: EGPAF Scale-up of PMTCT Services Data in Table 1 shows that the number of sites supported and pregnant women tested nearly doubled each project year. (The number for ‘sites supported’ is cumulative while for ‘women tested’ is the number of tests conducted in the period.) A review of the full cascade of PMTCT indicators (Figure 1) also confirms that EGPAF supported rapid scale up of services. The Program Manager for ACP/STD department of the Ministry of Health, Dr. Maadra, acknowledged EGPAF’s contribution to the MOH-“EGPAF helped us to roll out PMTCT services first to HCIV level, and now with the revised policy, to HCIII level”. The ministry estimated that PMTCT was offered in 421 sites nationwide and the goal was to reach the more than 900 existing health facilities to effectively cover all pregnant women. In terms of coverage, EGPAF districts with a total population of 9,131,264 (UBOS estimate based on 2002 census) and expected pregnancies per year estimated at 5.2% of the population (crude birth rate figure used by EGPAF) are expected to have about 447,949 pregnancies in a given year. EGPAF targeting anticipated that supported sites will receive 249,000 new ANC visits (56% of expected pregnancies), and that 170,000 (68% of new ANC and 38% of overall expected pregnancies) will accept HIV testing. EGPAF recently increased all targets when the no-cost extension was awarded. 2003 2004 2005 2006 2007* Number of districts 7 7 11 20 ** Sites supported 22 46 73 168 240 women accessing ANC ** 70,869 124,359 214,479 ** Women Tested ** 41,647 91,177 166,003 123,825 Source: Project data from annual reports and MEEPP. * 2007 data for 6 months **Data not available Page 6 There was an increase of number of women accessing ANC annually from 70,869 in 2003/4, 124,359 in 2004/5 and 214,479. This increase, coupled with a reduction in ANC annual client load per facility and reduced drop out in the cascades portrays an improvement in quality. Attempts to draw comparisons were hampered by the lack of true control and study areas but, nonetheless, the team attempted to make the best comparisons possible with available information. Another way of looking at EGPAF’s impact on coverage is to note the project’s contribution to total services (MOH data) that were delivered in the country. EGPAF’s coverage tripled over three years, and, while national service delivery only doubled during this time, EGPAF’s proportion of national services increased from 25% in 2004 to 51% of the total in 2006 as illustrated in Figure 3. Central level key informant interviews agreed that EGPAF had contributed to rapid scale-up of services. For example, the National PMTCT Coordinator stated that EGPAF’s primary accomplishment was to “support the scaling up of PMTCT in the country.” The Mulago Hospital PMTCT coordinator stated, “Expansion has been the main contribution of the EGPAF Program”. In Jinja district, the PMTCT coordinator stated “EGPAF supported us to scale up from one non-functioning site (in 2000) to 17 sites by the end of 2005”. Figure 2. PMTCT Service Data Cascade in EGPAF Supported Sites 2003/4 to 2005/6 PMTCT Cascade 1(Fig.2a) 85% 94% 97% 57% 73% 79% 56% 72% 78% 0% 20% 40% 60% 80% 100% Proportion of women accessing ANC counselled Proportion of women accessing ANC tested for HIV Proportion of women accessing ANC receiving HIV results PMTCT Cascade 2 (Fig.2b) 68% 70% 66% 40% 47% 47% 0% 20% 40% 60% 80% 100% 2003/2004 2004/2005 2005/2006 Proportion of women testing HIV +ve receiving ARV prophylaxisis Propotion of babies whose mothers are HIV +ve receiving ARV prophylaxisis Source: MEEPP Page 7 A.1.1 Achievement of Targets In the CTA Project first year work plan (2004), EGPAF set only one target – to bring PMTCT service to 46 sites. They achieved this. The 2005 work plan cited two targets – number of women counseled and receiving prophylaxis - they achieved neither (see Table 2). EGPAF staff cite two reasons for this: First issues beyond the control of the project such as underdeveloped health worker capacity, frequent test kit shortages, and other systemic issues which plagued the national PMTCT program creating what EGPAF calls a “dilution” effect and secondly the inexperience of the project (and indeed the country) with PMTCT target setting in 2005. In 2006 the number of targets increased due to PEPFAR reporting requirements, the project adjusted its targets based on the previous year’s experience and this time all targets were exceeded. The project then set more ambitious targets for 2007 and were exceeded. Table 2 shows selected achievements for 2005, 2006 and 2007. A complete table of targets and achievement can be seen in Appendix F. A.1.2 Data Quality. It is also pertinent to discuss a data quality/data validation assessment of EGPAF supported sites conducted at the end of November 2005 by the Monitoring and Evaluation of Emergency Plan Progress (MEEPP) project. Findings of the audit were generally positive showing: Figure 3. EGPAF Contribution to Total Services Access 25% 43% 51% - 50,000 100,000 150,000 200,000 250,000 300,000 350,000 2003/2004 2004/2005 2005/2006 Other sites EGPAF Sites Source: National PMTCT Program M&E Data Set & MEEPP Table 2. EGPAF Achievement of Targets Indicator Target Actual actual Target Actual 2005 2006 2007 # of HW trained in PMTCT 300 1,456 600 2036 # of sites supported 100 168 388 346 # of women new ANC visits 160,000 214,284 249,000 320,764 # of women receiving counseling 150,100 117,434 144,000 204,443 211,500 320,175 # of women tested 115,200 166,003 170,000 286,500 # of women receiving prophylaxis 7,295 5,250 5,141 8,135 7,104 19,355 Percentage women counseled 90% 95% 90% 99.8% Percentage women tested 80% 78% 80% 87% Source: EGPAF Project Annual Reports Page 8 A. 7 out of 10 sites representing 88% of the data under assessment and 52% of all EGPAF supported data were rated to be of acceptable quality. B. The differences detected between MEEPP’s independent recount and the figures in the Facility Summaries ranged from -15.4% to +10.1%. However, the Facility Summaries in 7 of the 10 sites were within 4% of the MEEPP Count.3 The report detailed suspected reasons for the discrepancies and noted that; overall, the quality of data had increased over the 6-month period. It also made a number of recommendations and observations. The assessment team noted that EGPAF had taken action on most recommendations of the audit. A.1.3 Quality/Effectiveness of Services In order to assess relative quality of services, the team sought ways to compare EGPAF’s quality indicators performance data with other implementers. Recent data for two quality indicators (the proportion of women taking up testing after counseling and the proportion of HIV+ women receiving ARV prophylaxis) in Uganda was examined for the four years of the EGPAF project. These graphs (Figure 4) compare EGPAF to an aggregated total of all other USG partners. Comparison data are from the MEEPP project for PEPFAR funded USG entities supporting PMTCT services. The evaluation team reviewed MEEPP reports that showed totals for the following USG entities over the years 2004-2007: USAID, CDC, DOD, Peace Corps, USAID/CDC, and State Department. Figure 4.EGPAF Performance Compared to Other USG Implementing Partners Source: MEEPP The data show that EGPAF rates were higher for 2005 and 2007 than the aggregated total of other USG implementers on: “proportion of women counseled who receive testing” and “proportion of HIV+ women who receive ARV prophylaxis”. For example in 2007, all USG partners provided ARV prophylaxis to 75% of HIV positive women while EGPAF, representing 71% of aggregated USG numbers, reached 83% of HIV positive women. In addition, USG implementer rates were generally higher than total national rates although national figures include USG data. EGPAF’s proportion of the total USG numbers (for these indicators) increased over time from 44% and 58%, respectively in 2005 to around 70% in 2007. The “proportion of women counseled who receive testing” is often considered an indicator of quality of counseling but it also reflects availability of test kits, waiting time, lab capacity, and many other facility specific factors. It is notable that EGPAF managed to maintain its 3 MEEPP Data Quality Assessment and Data Validation Report: EGPAF and AIM for Data Submitted in the 2005 EP Semi-Annual Report; 10/11/2005; Monitoring and Evaluation of Emergency Plan Progress Project. Proportion of Women Receiving ARV Prophylaxis (4b) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 2004 2005 2006 2007 USG other EGPAF Proportion of Women Counseled who Receive Testing (4a) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 2004 2005 2006 2007 USG other EGPAF Page 9 proportion in 2005 when other partners dipped, most likely according to EGPAF staff, due to the intensive roll out of services and related “dilution” effect of waiting for training and logistics capacity to catch up to demand. Reasons for fluctuations in the indicator “proportion of women receiving prophylaxis” are much more complex (including failure of women to deliver in facilities) but dilution with the increase in women receiving ARV prophylaxis (5200 in 2005 and 8100 in 2006) was probably in effect. Unfortunately, the single most important indicator of the effectiveness of a PMTCT program - number and proportion of exposed babies who test HIV negative - is the most difficult to assess for several reasons. The primary reason is the enormous loss of babies to follow-up due to failure of enrolled women to deliver in a health center. (The 2004-05 DHS shows that while 95% of women attend at least one ANC visit, only 41% ultimately deliver in a health facility.)Another factor is that the national M&E system is unable to track an individual client; hence women that deliver in a facility different from the one where they enrolled are often missed Finally, the data that is collected doesn’t give a full picture because, at least until recently when PCR became more widely available, most tests were done at 18 months of age and even babies who were delivered in facilities may have died or otherwise not returned for testing. (35% of HIV+ babies die before age 1, and 60% die before age 2 so the proportion of HIV+ babies tested at 18 months will be lower than it would have been if the children were tested at birth. On the other hand, children who are sick and have an HIV+ mother will constitute a high proportion of those tested which may bias the sample in the other direction that is the proportion of HIV+ babies is likely to be higher.) In addition to analyzing data for quality indicators, the team also analyzed interview and focus group findings. Regarding quality, in a Key Informant interview, one district PMTCT coordinator said, “ANC care for mothers has really improved and mothers are getting testing up to 98%”. A representative of Supply Chain Management Systems (SCMS/DELIVER II) noted that EGPAF had “increased coverage and quality of PMTCT services in the country”. Virtually all respondents stated that stock outs of test kits and ARV (and other supplies) were much reduced under EGPAF support. Some findings from Focus Group Discussions are tabulated in Table 3. Table 3. Quality Related Findings from Focus Group Discussion Quality related findings from focus group discussion with CLIENTS Positive Negative • Clients receive a full complement of PMTCT services in EGPAF supported sites. • Clients report that most health workers “are not rude” and that they are given privacy. • Clients state “number of mothers coming has increased due to free services like the rapid HIV test”. (This statement can be construed as reflecting positively on the quality of services – but increased workload may negatively impact quality. So it is included in both columns.) • Clients state “number of mothers coming has increased due to free services like the rapid HIV test”. • Waiting times have increased with the increase in ANC attendance. • Clients report various problems with supplies and drugs (stock outs, need to buy, nurses requesting payment) Quality related findings from focus group discussions with HEALTH WORKERS • Can offer much greater number of services to mothers: RCT, same day results, NVP… • Fewer shortages of drugs • Occasional stock out of drugs and supplies (“stock outs of test kits and ARV”) • Long waiting time (“waiting time has doubled”) • Increased workload, HW overloaded. (“…too many clients. We can only see 150/day”) Page 10 A.1.4 Comparing Poorer and Better EGPAF Sites To understand factors affecting quality or effectiveness of the EGPAF/CTA project, the assessment team also compared poorer and better performing EGPAF supported sites. Sites were grouped within selected districts according to relative performance on the indicator “proportion of women counseled who receive testing”. The assessment team analyzed Facility Head interviews and Focus Group data grouped by facility. Analysis of Facility Head interviews by site shows that better performing sites were more likely to have the following: o Higher proportion of total facility health workers trained o Salary support to augment staff o On-site ARV clinic o Family Support Groups Analysis of FGD responses by site revealed that in most areas there were no major differences. However respondents from better performing sites did more frequently note: o Same day HIV test results (HW and clients liked this) o Health Worker attitude had improved (clients) o HW felt more empowered, felt more pride in the service and in their increased competence, and complained less about workload. o Analysis tables can be found in Appendix G. A2.Training and Supervision – Impact on national policy and systems for training, supervision and capacity building; training linked to service delivery. EGPAF made major contributions to the national PMTCT program in the areas of training, supervision, and monitoring and evaluation. These are summarized below: A.2.1 Financial and Technical Support in Training Health Workers According to the national PMTCT Program Coordinator, KI from MOH noted that, EGPAF support enabled the MOH to accomplish a great deal of capacity building in the rollout of PMTCT services. EGPAF supported both the direct training of health workers at national and district levels as well as the establishment of a cadre of national and district level trainers through Training of Trainers (TOT) in a number of PMTCT related areas. These included the set of basic PMTCT trainings: 1) a technical PMTCT training of 5-6 days to orient all health workers in a PMTCT site, 2) a comprehensive PMTCT counseling training for ante-natal staff of two weeks classroom plus one week practical, and 3) an infant feeding training of 2 weeks. EGPAF supported training in several ways: 1) direct participation of EGPAF staff with MOH on training teams, 2) provision of technical assistance to training exercises by specialized staff or the EGPAF regional program officer, or, when capacity is in place, 3) simply providing funding through sub-grants to districts or other entities to conduct trainings. The foundation conducted an initial round of core trainings in new districts or sites but they regularly assessed and addressed capacity gaps that occurred at functioning sites as a result of Page 11 departure or reassignment of trained staff. A total of 3,300 health workers had been trained in one or more of the PMTCT core courses in the foundation-supported districts at the time of the evaluation. EGPAF also supported the MOH in development of training materials, policy documents, job aides, and patient educational materials. As PMTCT services evolved over time, EGPAF supported additional trainings such as comprehensive HIV care including ART, early infant diagnosis based on polymerase chain reaction method, and psychosocial support for family support group (FSG) leaders and other staff. EGPAF also conducted trainings in data management and collaborated with other USAID partners to ensure that district staff received logistics management training and support. See Appendix H for a list of training related materials developed by the MOH in partnership with EGPAF. A.2.2. Support for Supervision While MOH policy calls for an integrated quarterly “support-supervision” of district and health sub-district (HSD) level facilities by a national team, this had not been fully operationalized. Likewise, District Department of Health teams are meant to conduct monthly, integrated supervision visits to lower level health units. However, with the constant rollout of new approaches, the multitude of partners and programs, and due to shortages of both financial and human resources, regular supervision visits were often replaced by funded program-specific (‘vertical’) support-supervision, data-collection, or training follow-up visits. Support￾supervision of PMTCT sites was fairly consistent since the program’s inception, with EGPAF districts receiving a particularly comprehensive set of interventions. EGPAF provided both technical assistance (through participation of EGPAF staff on teams) and financial support to central and district level supervision mechanisms shown above. A3. Integrating PMTCT with Care and Support and Other Services Integration of PMTCT into other MCH services started from the beginning of the program. This was to enable mothers to receive all the necessary services in one setting. As new services became available, they were integrated into the existing ones. This section will discuss integration of PMTCT into MCH, Integration of treatment and care into MCH, and Complementary Services Provided by EGPAF E. quarterly or periodic visits by MOH teams F. monthly visits by district teams G. training follow-up visits and mentoring for a wide range of trainings H. need based technical support and troubleshooting visits by EGPAF technical officers with district-based PMTCT coordinator I. Vehicle maintenance and other transport costs not covered by the MOH or the Ministry of Local Government (MOLG). J. EGPAF offered financial support the Ministry of Health to carry out technical support countrywide including non￾EGPAF-supported districts. K. Support to district and facility level monitoring and evaluation systems to capture and report necessary information. Page 12 Integration of families and communities in PMTCT: how it was achieved, what worked well, and what didn’t work well. A.3.1 Integration of PMTCT into MCH PMTCT in Uganda was initiated in 2000 when the MOH together with key development partners including EGPAF launched PMTCT services in the country. The MOH approach was to integrate PMTCT services directly into Maternal Child Health services. A.3.1.1 How was it achieved? This integration involved joint planning and collaboration between EGPAF, other development partners, and the MOH-PMTCT program. Health workers offering maternal and child services were equipped with knowledge and skills on the basic PMTCT training package and offered regular technical support supervision as they implemented the services. In addition, policy and implementation guidelines, job aides and educational materials were developed and disseminated. PMTCT was made part of the routine ANC services and was not seen as a separate or vertical program. PMTCT data collection and monitoring tools were developed and operationalized and later integrated with reproductive health indicators into one register. All this increased the utilization of all ART services (see Figure 5). A.3.1.2 What worked well? The trainings which equipped health workers with additional skills and knowledge on non￾core PMTCT issues in MCH like family planning, infant feeding, maternal nutrition and management of malaria. Inclusion of PMTCT as part of the ANC services. A.3.1.3 What didn’t work well? Delayed access to services by clients due to increased tasks and shortage of human resources meant that the few HWs were often overstretched. Privacy of clients was lacking due to inadequate infrastructure which could not ensure privacy especially during counseling in some health facilities. Continuity of services implementation was hampered by frequent shortages of medicines and commodities - especially HIV testing kits, gloves, delivery kits and protective gear. Reduced uptake of services due to fragmentation of services especially laboratory testing. Data was incomplete and reporting was untimely. Integration of HIV Treatment and Care into PMTCT 0 1000 2000 3000 4000 5000 6000 7000 8000 9000 2005/2006 2006/2007 # enrolled into comprehensive HIV care # mothers assessed for ART eligibility # on ARVs (infs and mothers) # infants on CTX # mothers receiving ART Figure 5: Integration Indicators Page 13 A.3.1.4 How were these challenges addressed? MOH, EGPAF and WHO initiated the change in the HIV testing policy guidelines for PMTCT from the Voluntary Testing and Counseling model (VCT) -from “opt-in” to “opt￾out” model to a routine testing and counseling. They also strengthened the policy in support of provision of same-day HIV test results. EGPAF supported sites by remodeling the ANC service areas to include a small laboratory for rapid testing and counseling rooms that ensured privacy. This enabled the mothers to access services at one service point. In some districts, like Jinja and Mbale, EGPAF supported salaries for additional staff. IEC materials were developed and disseminated. PMTCT committees were formed at implementation sites for continuous review of services at their respective sites. EGPAF started procurement of medicines and commodities especially HIV test kits and Nevirapine for prophylaxis to fill in the gaps created by stock-outs. A.3.2 Integration of Family Planning into PMTCT Family Planning (FP) is an integral part of MCH services, though support for the national program has waned in recent years, and as such was in place when PMTCT was launched within the MCH service. A.3.2.1 How was it achieved? Linking FP services with PMTCT services has been facilitated by the fact that FP, PMTCT and other MCH services are delivered by the same service providers and offered under the same roof in most facilities. A.3.2.2 What worked well? The MOH PMTCT policy, in keeping with WHO’s second prong of PMTCT programming, guided PMTCT services to offer FP counseling and methods to HIV positive women. FP also forms one of the key topics covered during PMTCT counseling trainings with emphasis on special risks of pregnancy for HIV positive mothers and their children, dual protection, benefits of FP in the context of PMTCT and considerations to be taken when using ARVs. The training also covered interactions between FP and TB medications. As part of an ongoing effort to improve FP services, EGPAF conducted an assessment of FP services in 2004.4 In response to the findings of the assessment which generally showed inadequate availability of FP at PMTCT sites, EGPAF worked with the MOH to launch Family Support Groups (FSG). The FSGs provided an opportunity for HIV-positive pregnant women, postnatal mothers and their families to support each other psychologically and socially and to increased uptake of FP methods to prevent unintended pregnancies. Family Planning was one of the topics included in the FSG leaders’ session guides. A.3.2.3 What didn’t work well? The 2004 assessment found that while FP services were available in all the health units assessed, they were located only in the MCH clinic and therefore not reaching mothers in the maternity wards or those who brought babies for immunization. Service providers’ knowledge level regarding family planning was generally low. Health Workers were not delivering key family planning messages even when clients came for services and very few women who brought babies at six weeks for immunization received a family planning 4 Analysis of family planning services in EGPAF supported districts in Uganda by Fiona Kalinda 2005 Page 14 method. In addition, service providers generally felt that HIV positive mothers should be counseled not to have any more children. The evaluation team found that most of these conditions remained in place at the time of evaluation and that providers were generally not able to effectively address FP clients’ needs within the context of the complexity of HIV service delivery. A.3.3 Integration of treatment and care into MCH Treatment, care and support of HIV positive mothers and their families is the fourth prong of PMTCT. This had been the weakest component of the program in Uganda due to the unavailability of ARVs in most sites until recently. The EGPAF PMTCT services were now able to link PMTCT clients to ART care in the six JCRC centers of excellence, forty MOH ART sites and a few other sites where ARVs were available such as sites supported by Uganda Cares in two districts and sites supported by Global fund drugs. A.3.3.1 How was it achieved? In June 2005, EGPAF started to network with different partners to ensure access of ARVs to the pregnant mothers and their family members. With guidance from the WHO strategic PMTCT approach prong four which stated that “provision of care and support to HIV positive pregnant mothers and their family members”, and in the face of the then prevailing conditions of increasing availability of ARVs. This involved joint planning between EGPAF and the Adult and Pediatric ART committees of MOH. It also led to signing of a memorandum of understanding between the Foundation and the JCRC in which the JCRC was to provide ARVs and laboratory support to the EGPAF PMTCT clients and their children in sites where they operated. A number of trainings were conducted to equip the MCH staff with knowledge and skills to offer HIV/AIDS treatment and care to the clients. These trainings included; comprehensive HIV/AIDS care including ART, pediatric counseling, and adherence counseling. EGPAF and MOH offered regular technical support to the MCH staff / HIV clinical care teams to build their confidence and consolidate their knowledge and skills. Standard Operating procedures and job aides were provided to the service providers to support them perform their work better. Systems were supported to ensure allocation of OI drugs like cotrimoxazole to the MCH department. EGPAF also supported the MOH efforts to prepare sites for accreditation in delivery of ART services. Systems were also put in place to ensure transportation of blood samples from implementing sites to JCRC centers of excellence and results sent back to the sites. Through the Clinical Mentorship Program pediatricians from the regional referral hospitals were trained and equipped with trainer skills. These supported lower cadre health workers on a regular basis through mentoring to care for the HIV exposed infants and children infected with HIV. Page 15 A.3.3.2 What worked well? The integration of services improved access to services. Different approaches were used for the HC IVs and hospitals. HCIVs with a relatively low number of clients, had services offered at same service point. In hospitals with a comparatively high patient loads, the mothers were referred to ART clinic. This resulted in an increased number of mothers and babies being enrolled in care and receiving ART (see Table 6). The data on referrals from JCRC clinics indicate that most of the pregnant women who come for testing have been referred from an EGPAF supported site (see Table 4). A.3.3.3 What didn’t work well? Referrals outside the facility for ART (198 sites) hindered access to ARVs services due to long distances to facilities with ART. Follow up and continuity of services was poor in all 6 sites visited due to stock-outs of medicines, especially cotrimoxazole and ARVs. A.3.4 Integration of families and communities in HIV care, support and treatment Postnatal care follow up is only 7% (UDHS 2006) and this is reflected in the low rate of continuity of services for mother-baby pair. To address this, EGPAF came up with the family support group initiative with the main purpose of strengthening the provision of PMTCT services to HIV positive mothers (both antenatal and postnatal) and their families by providing an opportunity to meet and support each other psychologically, socially, and to link them with HIV /AIDS prevention, treatment, care and support A.3.4.1. How was it achieved? This involved joint planning and collaboration between EGPAF and the PMTCT program MOH. Implementation guidelines were developed and disseminated. Capacity building was done at both District and health facility levels. Technical support was offered to district focal persons and health facility services providers to help initiate, to build their confidence and consolidate their knowledge and skills. EGPAF also facilitated the FSG meetings by providing lunch to participants. Table 4. JCRC Referrals - 3 districts EGPAF Total % EGPAF Total referrals 350 1,994 18% Female referrals 331 1,311 25% Pregnant mother referrals 153 162 94% (Source: JCRC-Mbale, Kabale and Gombe hospitals) Table 4. 2006 Integration Indicators (Cumulative) Number of individuals enrolled in care (inc children) 6,994 Number PMTCT sites with FSG groups 67 Number of PSS facilitators trained 426 Number partners and children tested 714 Number receiving ARV prophylaxis (adults and children) 1,082 Number using Family Planning 1,193 Individuals on Septrin Prophylaxis 2,288 Number on HAART 506 Source: EGPAF Semi-Annual FSG Report March 2007 Page 16 A.3.4.2. What worked well? The number of children and partners tested for HIV, the number of children and mothers who swallowed ARV prophylaxis and number of children and mothers accessing ART increased. Particularly, the number of new acceptors of FP methods increased. A.3.4.3. What didn’t work well? Male involvement remained low and lack of transport facilitation to attend FSG meetings. A.4 Support to Monitoring and Evaluation At the central level, the Foundation using other sources of funds paid the salary of an MOH monitoring and evaluation officer and two data entry clerks. At the district level, computers and internet services were installed to improve data management system and support on job training in data management at health facilities. EGPAF developed a data and records management course offered to all supported sites in response to the Data Quality Audit conducted by MEEPP/USAID in 2005. Data collection and monitoring were supported through regular supervision and mentoring. EGPAF also supported districts in using data for decision making through feedback meetings and other mechanisms described in “Knowledge Sharing” section below. A.5. Project Management A.5.1 Project Overview EGPAF management felt that, in general, the USAID cooperative agreement allowed for program flexibility and enabled them to respond to the rapidly evolving needs of the PMTCT program. It allowed for versatile programming, with quarterly cycle assessment of district performances and re-planning. The model enabled the technical staff to offer quarterly support to the implementing sites and promoted regular monitoring and feedback to the sites that enabled them to improve. Some frustration among EGPAF management team with the USG procurement and funding cycles was evident to the evaluation team however, especially as uncertainty about future funding was causing difficulties in retaining key project staff. In addition, the evaluation team heard from several sources that USG supported partners’ craved increased leadership from USAID in coordination of activities, partnership among USG projects and increased synergy through formal meetings and activities such as mapping exercises. EGPAF also had difficulty with the lack of clarity about targets and deliverables in the initial cooperative agreement and currently found that indicators for tracking of PSS interventions and linkages to care and treatment were inadequate. Finally, some EGPAF staff thought that a “performance-based” contracting approach that was dependent on results and which took into consideration those activities already achieved might be more efficient. A.5.2 Sub-Grants. The Foundation operated through sub-grants mainly with the district local government structures, but also with some NGO’s for historical reasons or to augment district capacity in some areas. In addition to district local government sub-grants, sub-grants were currently in place with: Makerere University/Johns Hopkins University (MU/JHU) to support to three hospitals in Kampala -Mulago, Mengo, and Rubaga. Page 17 AVSI (Italian Cooperation) in Hoima district World Harvest, a faith based organization based in Bundibugyo district. MOH/ACP/PMTCT Division (mainly private funds to M&E section) (See Appendix J for a complete list of sub-grantees.) Prior to the cooperative agreement award EGPAF issued grants using private Foundation funds to a number of non-governmental organizations. As noted above, NGOs were fairly good at delivering immediate results in their zones of operation but had challenges reaching beyond that and in integrating services within the already existing MOH systems. In the second phase, with sub grant agreements signed between the district administration and EGPAF, EGPAF found that working through district structures favored integration of services, promoted ownership and sustainability, and strengthened MOH structures. The EGPAF sub-grant operations appear to have been effective and adequate in terms of compliance requirements and overall performance. Initially, Requests for Applications (RFA) were publicized to which government and non-governmental organizations responded with proposals. According to project staff, pre-award assessments were done on all sub-grantees following appropriate regulations (ADS 303.5.9, USAID Handbook 13 and 22CFR266). EGPAF routinely conducted post-award reviews of sub-grants on a quarterly basis using different tools including Risk Assessment and Assessment of Internal Control Environment checklists. EGPAF also maintained an automated web-based Contracts and Grants Information Systems (CGIS) containing a sub-grant detailed database and which tracked all sub grants and contracts from start to closeout. The evaluation team agreed that the sub-granting approach was an efficient way for the project to obligate and utilize funding, that it supported the autonomy of implementing partners and fostered a participatory approach, and avoided a “project” mentality. However, the process is onerous and required a large investment in systems. The process started with proposal development (even this element is sometimes supported by the project), review and selection of proposals (under PEPFAR the districts were guided through the process jointly managed by USAID and MOH), award and development of work plans, post-award compliance and reporting and monitoring mechanisms, and other grants management processes including data systems management and tendering systems at district level. Another challenge EGPAF was facing at the time of the evaluation was the problem of aligning sub-grants to districts that had recently been split or otherwise redistributed in a GOU restructuring exercise. A.5.3 Support to MOH The Foundation also offered support to the central MOH PMTCT activities through technical support for policy development, training materials, and M&E. EGPAF technical experts participated on numerous PMTCT and Pediatric HIV/AIDS care committees. Also with private Foundation funds, EGPAF provided salary support to address critical human resource shortages directly. At the central level, to ensure that the PMTCT Program data collection and reporting were in place, EGPAF paid the salary of one Monitoring and Evaluation Officer and two data clerks. At the district level EGPAF worked closely with Local Government to fill health worker positions necessary to delivery of PMTCT services in selected sites. EGPAF agreed with district government that salaries will be paid at district levels but for a limited time only. The districts agreed to pick up the costs after a year or two and were able to incorporate the position in their annual budget. Page 18 A.5.4 Contracts, financial management and compliance monitoring The EGPAF compliance officer handled contracting, award modifications, pre-award assessments and monitored financial management and quarterly physical reviews. Grants to GOU entities used the government financial management systems and the EGPAF technical and finance teams did monitoring jointly during regular visits to the districts and sites. A consultative working relationship was maintained between the Foundation officers and the district finance team. Funds were released monthly on presentation of accountability reports that were consistent with quarterly work plans and accounting guidelines. A.5.5 Logistics Support. EGPAF provided technical support to districts and sites to strengthen logistics management. EGPAF worked closely with DELIVER project to ensure training of PMTCT staff in logistics management and provided ongoing TA to make sure bi-monthly report forms were completed and returned to MOH/DELIVER. All staff were taken through the forecasting process and timely and accurate reporting was stressed at all contacts. Quite often the project facilitates acquisition of supplies from NMS/DELIVER/MOH and even helps to distribute supplies during regular program monitoring visits when national systems fail. EGPAF advisors also signal when stocks are running low and work with sites to ensure they follow up with the MOH/DELIVER II/NMS. In recent years EGPAF had, with private funds, procured a “buffer stock” of critical supplies to address emergency shortages. When no stocks were available at the NMS, and there was no other recourse, then sites were given supplies from the EGPAF office. When this happened, sites were encouraged to include the emergency provision in their bimonthly reports to MOH/NMS as a negative adjustment. This aided forecasting and planning though not a sustainable approach. A.5.6 Knowledge sharing EGPAF placed particular emphasis on maintaining its technical leadership and promoting knowledge sharing. EGPAF and district staff participated in exchange visits and held semi￾annual in-country Implementers Meetings of all Districts for both program and finance staff. At a recent meeting in Mbarara, the participants, in addition to sharing information on such issues as "District coverage", conducted site visits with three groups visiting different sites in Kabale District. This was followed by a group discussion of issues from the visits. For instance, the introduction of Family and Children's Support Groups raised interest and many wanted to begin implementation. EGPAF also held regular International Implementer’s Meetings. Uganda hosted one in October 2004 and in 2006 it was in Arusha. These meetings provided an opportunity for all participants to share information and tackle issues together. Scientific Directors such as Dr. Cathy Wilfert kept the pressure on programs to support policy updates and implement emerging best practices. "Give nevirapine at diagnosis! Move now to routine counseling and testing!" In addition, staff technical advisors met twice a year to share experiences. They also had regular conference calls among key technical staff to discuss emerging issues. Knowledge sharing with the district was done at the district level through support from technical advisors and through joint data analysis, feedback and report sharing. EGPAF supported sites in data and records management, that they were strengthened to prepare timely reports, and conduct their own analysis. Reports were then forwarded to the HSD, Page 19 district, MOH and to EGPAF. Technical Officers provided feedback during site/district visits, at site implementers meeting and through periodic reports compiled by the foundation and shared. Trainings were offered according to the identified needs and the trainees followed up at their work places within a month of the training. At the national and international levels, papers are prepared – often based on program data – and presented at all major conferences. EGPAF recently presented papers on the Family Care Model at ANPPCAN (African Conference on Child Abuse and Neglect) and the International Students' Convention on Child Health in Africa held in Kampala. During the upcoming OGAC meeting in Kigali EGPAF was to present a paper on a model from Kawolo Hospital. "Integration of HIV care in the MCH". See Appendix for list of papers written by EGPAF/Uganda staff. A.5.7 Documentation of Successful Models. EGPAF’s support for national and district level data collection and reporting systems ensured that lessons and promising practices could be tracked and documented. In addition, until 2005 EGPAF had a contract with Family Health International (FHI) to monitor all Call to Action programs in Africa. FHI conducted annual monitoring visits and prepared reports that were widely disseminated. EGPAF was able to assume this role as internal and MOH data systems become more robust. Emerging lessons and promising practices were shared via mechanisms described above. A 6. Relationship with MoH and Other key implementing partners The EGPAF CTA project is housed at EGPAF Headquarters central office in Kampala. A small team of about eleven management and technical staff runs all Foundation activities in Uganda. In the early years before USAID funding (2000-2003) EGPAF staff shared the AXIOS country office and implemented activities using private foundation funds working mainly through local NGOs deemed able to supervise and manage PMTCT services. (Some private Foundation funding was also provided to the MOH to facilitate start up of the national PMTCT program at this time.) Sites and programs during this period were chosen by EGPAF staff with MOH participation through an RFA process combined with external review. Even though the Foundation was targeting what they called “low-lying fruit” (that is, capable partners and conducive situations) some districts and sites did not perform as well as they should have and too many women in need were missed. At this point, and as national capacity had increased, EGPAF felt it would be more effective to fund the districts directly while continuing to provide a technical support role. As donor funding for the EGPAF program increased, activities and responsibilities also increased requiring EGPAF to continuously expand and adjust staffing responsibilities. The Country Director had to hire additional staff to manage programs, operations, finance, contracts and grants. Line management was put in place to ensure the effective running of the overall operation. At the time of the evaluation the team structure appeared fairly lean and efficient with technical managers assigned to three project regions having responsibility for all operations in defined zones. Interviews with project management staff and MOH respondents revealed overall satisfaction with the structure. Key informants at district level expressed appreciation for the regional technical officers, as they liked having one person knowledgeable and responsive to all their issues. (See Appendix I for EGPAF/Uganda’s Page 20 organizational chart). Beginning in 2005/2006 some central procurement on behalf of the Districts was done by EGPAF to improve cost effectiveness. EGPAF carried out joint planning and coordination of all activities with the central MOH. EGPAF participated in the relevant planning sessions by the MOH and also involved MOH in their planning processes. B Factors Contributing to or Hindering Achievement of Goals and Results? B.1 Contributing Factors Between 2004 and 2007, EGPAF assisted the MOH to introduce improvements at every level of the PMTCT program—the central MOH, district level, and facility level. The program was implemented in a manner that increased the confidence of everyone associated with the new PMTCT services. EGPAF’s approach was to see that all problems and potential problems in the PMTCT service were addressed at once—commodity supply, training, connection to ART services. By introducing the new support simultaneously, the EGPAF PMTCT program “worked” from the beginning. The following factors helped to create this positive effect: B.1.1 EGPAF focused on PMTCT services. EGPAF staffs were experts in PMTCT before they began to work in Uganda and the international Foundation reinforced that expertise. EGPAF placed a strong emphasis on developing and maintaining technical leadership among its staff. The tight focus on reducing pediatric HIV enabled the program to concentrate on, and help advance, the rapidly evolving technical and programmatic changes around PMTCT. B.1.2 The program worked within the existing health system and services. EGPAF worked through the MOH systems that were in place—they did not have to establish new services. It was particularly noted that PMTCT was integrated into the facility based MCH/ANC service and not added on as a new program. This approach enabled rapid expansion and contributed to health worker acceptance and to ongoing sustainability. B.1.3 EGPAF developed excellent working relationships with the MOH and other key partners. The MOH appreciated EGPAF support and especially endorsed EGPAF’s approach of working through the GOU existing structures. This was stressed in all MOH interviews. All partners with whom EGPAF worked reported an excellent working relationship and appreciation for the partnership. B.1.4 The program was introduced to all staff at the same time. In most places, EGPAF introduced the program to management, service delivery, and the laboratory staff at the same time so that each group understood its place in the program, how the collaboration would work, and how any additional funding would be spent. A knowledgeable and informed team was created. Where this type of introduction was omitted, the program ran less smoothly. In a HC IV facility in Mbale that was not working well, the program had been introduced first to the service providers, then to the laboratory workers, and finally to management. The design of the program was never discussed with all three groups simultaneously. The clinic manager Page 21 related that the MCH midwife “owned” the program and he said that the midwife invited people to work on PMTCT only when she chose. He asked for greater transparency with the funding. B.1.4 The trained health workers saw themselves as a team. Facilities that performed had a sense of teamwork among providers such that the staff did not feel alone in implementing the program. They appreciated the linkages to district and other services that were created by the training, coordination groups, and frequent supervision. The director of one HC IV facility noted that because all the staff were trained at about the same time, they started off together as a team. He said that they were more willing than other staff to cover for each other and to make sacrifices for the good of the program. The staff had set up a program in which everyone who was trained would present what they had learned during training to other staff at the facility. He concluded that he’d like to have the rest of the staff trained as EGPAF had trained the PMTCT staff because the heightened level of cooperation was improving services. B.1.5 Everyone benefited in some way. The MOH, facility staff and clients all felt that they had benefited from the EGPAF program. The Ministry received technical assistance in designing its over all approach to PMTCT services and in monitoring those services. The district staff received additional manpower, transportation and funding to supervise this program. There were training courses for implementing staff in many aspects of the program including laboratory skills for HIV testing, logistics management, and child feeding. All involved staff felt that they were being given the chance to improve their skills and add to their qualifications. In most cases, these benefits created enthusiasm about the program. B.1.6 Possible frustrations were anticipated and solved. The program reduced areas of frustration, specifically supporting a “buffer stock” of supplies for emergencies and filling needed health worker positions, and the net result was greater ease in implementation of the program. When staff returned to their health facility after training, they found that they could immediately put new skills into use and deliver the program as they had been trained to do. They did not face supply shortages or other frustrations in implementation. This ability to address problems was linked to EGPAF’s flexible and well-funded program. The MOH may not be able to achieve the same level of responsiveness due to systemic and funding constraints. B.1.7 Both health workers and clients became more confident. Because all parts of the program are working, health workers and clients felt that health facilities were doing a better job than before and that they were providing clients with good care. Health Workers were proud that they could deliver good services and they felt that the program would continue to provide new approaches that would help them improve. The staff in two HC IV facilities mentioned that they were looking forward to learning from the district how to start a new group for children and that they planned to start such a group whenever they learnt how. Clients appreciated the new attitude and skills of the health workers whom they said were less rude. Clients also reported that they had learned a great deal from the service. B 2 Hindering Factors Analysis of key informant interviews highlighted mainly systemic factors that hindered EGPAF in their performance. B.2.1 Stock outs of medicines and commodities. Despite an overall improvement in maintaining supplies under EGPAF, there continued to be occasional stock outs of HIV test Page 22 kits and nevirapine tablets in almost all health facilities. As one respondent stated, “Without HIV test kits and nevirapine tablets and syrup for ARV prophylaxis there is no PMTCT program” B.2.2 Weak infrastructure of the health system especially maternity care. PMTCT programs were placed into reproductive health services that were not strong. As only 41% of Ugandan women delivered in health facilities this created enormous missed opportunity for delivery of prophylaxis to babies (or mothers who did not receive in ANC). Obstetric practices modified for HIV+ women during labor and delivery to reduce transmission of HIV were also missed when women delivered at home. There were a number of health system factors that made delivery in facilities a poor option for women. The assessment team visited a health facility where a single midwife was caring for four mothers who were in advanced stages of labor and the team noted that several women in labor were waiting to register. Almost all facilities lacked proper infrastructure, emergency obstetric equipment, and adequate infection control measures. B.2.3 Human resource constraints. Both system-wide and in some EGPAF supported sites there were not enough health workers to allow for proper delivery of PMTCT services. This was especially true regarding midwives in the poorly performing clinics the assessment team visited. This seemed to be due to high staff attrition rates. One manager put it frankly, “We train them and they are taken away by better paying NGOs. Why don’t they train their own?” B.2.4 Difficulty in changing practices of the most senior doctors in the larger hospitals. Some respondents noted that it was hard to change the habits of senior Doctors and have them adopt new practices. “We can’t really penetrate those [senior doctors]. We sometimes can’t mobilize those people and bring them on board. We can’t do support supervision to our seniors.” B.2.5 Delays by the MOH to revise and implement policy guidelines to reflect lessons learned. This was especially noted for enrollment of HIV positive clients into PMTCT (giving nevirapine tablet to mother). Most countries had started enrollment on first contact 3 years back, Uganda started last year and in some health facilities the assessment team visited, HW were still enrolling at 28 weeks. One respondent stated “It took one year to revise the policy to emphasize the need for treatment and care for HIV positive pregnant women” Page 23 C Did the CTA project yield any unintended results, whether positive or negative? All interview guides included this question, and the team also kept the question in mind during site visits and document review. The following are the elements that emerged. C 1 Positive Results: C.1.1. Increased availability of HIV testing outside PMTCT. PMTCT introduced HIV testing services in a number of health facilities that had not previously offered them. The capacity gained enabled the sites to offer VCT and number of individuals seeking VCT services who were not PMTCT clients greatly increased. C.1.2 Health workers’ improved skills in PMTCT may have improved quality in other services. Both interview and focus group findings suggested that health worker’s increased confidence, knowledge and capacity in HIV service provision spilled over into other duties and improved client perceptions of care. “Now midwives tell us the truth.” (Client) “Now everyone is a counselor here. Every client is counseled for HIV.” (Health worker) “…we have beefed up our knowledge base and we get better as we use it.” (Health Worker) C .2 Negative Results C.2.2 PMTCT has increased pressure on weak maternity services. PMTCT increased the number of clients coming for ANC as well as the amount of time the HW must spend with each client. The workload and patient numbers are overwhelming in some sites. In addition, the demand for medicines and commodities increased such that even with good planning many sites were not able to anticipate their needs, and national stocks were being depleted much faster than anticipated. In addition, the PMTCT program’s encouragement for mothers to deliver in facilities underscored the woeful condition of maternity services nationwide. C.2.2 Emphasis on PMTCT and HIV overshadowed routine MCH and other basic care. A number of respondents felt that too much health service attention was placed on the 6% of the population of mothers who are HIV positive to the detriment of the 94% who are HIV-negative. C.2.3 Early infant HIV diagnosis might affect child survival. With the introduction of DNA PCR, children born to HIV-positive mothers were being tested between 6-10 weeks instead of 18 months. As much as early diagnosis had the advantage of allaying the anxiety of the families and offering early treatment and care to the HIV-positive children, there was some evidence it might be having negative impacts to survival of HIV-negative children. Sites with PCR were noting that mothers whose children were negative stopped breastfeeding even though they couldn’t afford replacement feeds. At the same time these children stopped receiving cotrimoxazole prophylaxis hence making them more vulnerable to malaria and other illnesses. Page 24 3 LESSONS LEARNED In formulating the lessons learnt, the evaluators combined the last evaluation question “What opportunities/constraints exist for future support for integrating PMTCT with HIV care and treatment services for adult, as well as pediatric patients, with reproductive health /FP and ANC/ maternal health services” in the discussions under each lesson. The following lessons emerged from the assessment. PMTCT services could not be maximized unless the health system foundations are strengthened. Reproductive health services in Uganda including ANC, but especially maternity care, are not strong. PMTCT training had improved ANC services but there were many aspects that were still weak. The preliminary findings of the 2006 UDHS showed that still only 41% of women delivered in health facilities. Although transport costs and low awareness remained as challenges to increasing facility deliveries, there were additional factors that made delivery in facilities a poor option for women. The assessment team visited a health facility where a single midwife was caring for four mothers who were in advanced stages of labor and the team noted that several women in labor were waiting to register. The team visited other facilities that needed equipment and lacked adequate infection control measures. Although the recently revised PMTCT policy called for expansion to HC III in order to increase coverage, these centers suffered from staff shortages and even poorer labor and delivery facilities – if they existed at all. The present strategy is to expand PMTCT services to include HIV testing of the family, and treatment and care of HIV+ people. It might be preferable to address these other issues directly. This is especially true of HIV care and treatment services that had funding available to them. Increasing coverage demanded a dependable supply of test kits and drugs. Without test kits and ARVs there is no PMTCT program, yet there were still stock outs in most facilities visited by the assessment team. EGPAF had addressed this by working to strengthen logistics at district level and when this wasn’t enough – maintaining a “buffer” stock of test kits for emergency stock-outs. This solution had limitations and should be considered only a short￾term measure. The MOH was working to improve forecasting, planning and requisitioning at the national level so that national systems could meet the needs. Planners must ensure that this aspect of the PMTCT program works well. PMTCT had greater coverage than ART services and the result was insufficient linkages to services. Connecting HIV+ people to care and treatment services was a goal of the PMTCT program that could only be reached when there were sufficient ART services in place. The EGPAF PMTCT services were now able to link PMTCT clients to ART care in the six JCRC centers of excellence, forty MOH ART sites and the few other sites where ARVs were available such as sites supported by Uganda Cares in two districts and sites supported by Global fund drugs. EGPAF had begun a system where blood drawn at the health center level was sent to a referral lab for analysis. This system relieved clients from having to travel to a facility for their CD4 count and other services. In fact, PMTCT services were doing an increasingly good job of reaching women in ANC clinics with HIV testing including CD4. But an intensive effort was needed to establish and connect a network of care and treatment services. Page 25 Provision of prophylaxis and follow-up of the exposed baby were the weakest links in the PMTCT cascade. A low proportion of exposed infants received prophylaxis for reasons including: failure of women to deliver in facilities; lack of light resistant, user-friendly, individual dose packaging for nevirapine syrup; and various socio-cultural and other factors. Linked to this was the difficulty of assessing the effectiveness of prophylaxis at the program level because of the low rate of follow-up testing. The MOH and all PMTCT partners were working to address these weaknesses with a number of innovative solutions – including the introduction of testing at 6 weeks with DNA PCR – but this must be addressed urgently and with consideration to possible negative effects to HIV-negative infants. Integrating FP into PMTCT might not result in a strong FP program. Studies elsewhere have noted that integrating family planning into PMTCT services does not necessarily result in a strong family planning program.5 Where women came several times to the ANC clinic they received repeated messages about family planning but in Uganda women usually come once.6 In Uganda, family planning information was included in general ANC “health education” as well as one-on-one counseling that took place after testing, but this was insufficient and diluted in the numerous topics that were covered. The assessment team heard that the PMTCT program increased interest in family planning and contraceptive methods, except some long-term methods, were largely available in the health centers, but uptake of family planning was very low. Multiple approaches were needed to reach men with HIV information, testing, and services. In interviews and focus groups, both health workers and clients said that men were a barrier to increased use of PMTCT and ART services. Women reported that their partners made the decisions about whether a woman could come for ANC services, deliver in a facility, attend a family support group, or come back for any referral. In addition, the husbands’ attitudes prevented some HIV+ women from disclosing their status for fear of violence or that their husband would send them away. Health facilities, with EGPAF support, had done a number of things to attract men for HIV testing and counseling but with limited success. Facilities tried men’s groups, men’s health service areas, sending men personalized invitations to come and test with their wives, encouraging testing among men who accompanied their wives to facilities for delivery, and other things. All of these strategies had attracted some men, but the majority of men are still cut off from health information and care. While visiting facilities, the assessment team learned of additional ways to reach men with information and testing. In Mbale, TASO distributed food and other goods in the compound of the health centers about once a month. Team members observed that about one hundred men had gathered in one health center when TASO was there. This gathering was a possible opportunity to provide HIV information and testing to men. At another health facility, the assessment team heard that outreach services such as “health days” in rural areas were very popular, especially with young men, and especially when videos were shown. Whenever the health team presented a video, men as well as women attended the health information sessions. The outreach workers covered malaria, family planning, tuberculosis, HIV, and other health issues. These sessions were so popular that the health workers said that they did HIV testing until they ran out of kits. They noted that young men in particular were willing to be tested in this non-clinical setting. As noted in the 5 Rutenberg, Naomi and Carolyn Baek. Field Experiences Integrating Family Planning into Programs to Prevent Mother-to￾Child Transmission of HIV. Studies in Family Planning, 2005. 36(3) 235-245. 6 Rutenberg, N. et al. 2003. "Family Planning and PMTCT Services: Examining Interrelationships, Strengthening Linkages," Horizons Research Summary. Population Council: Washington DC. Page 26 literature, young people often like to go for testing with a group of friends so that each gives the other courage. When youth do so, however, health providers often criticize them for not being serious about testing. Outreaches could be redesigned using some of these innovations to reach more men. A. Small incentives could bring big results. It is the poor who were not accessing needed services. For them incentives such as transportation money, free drugs, or a free lunch made an important difference in whether or not they seek care. Although such programs are not sustainable, they would increase coverage in the short term. Incentives for men might be particularly helpful. B. Scheduling services around client availability can increase uptake. PMTCT staff noted a number of factors that affected attendance at health facilities. For example, clients came in the afternoon in the rainy season and few clients came during months when agricultural labor was most intense. In several places, clients came on days that had been reserved for ANC before the service was offered daily or they came when a market day was held. Health center staffing and hours of operation were adjusted to some extent but could maximize attendance through more careful timing. C. The private sector was a missed opportunity for delivery of PMTCT services. An estimated 25% of women attend a private health facility for antenatal care (UDHS 2000-01). The private-for-profit sector was not included in PMTCT data collection so it was not possible to estimate their participation in delivery of PMTCT services. To increase coverage, the private sector should be integrated in the national PMTCT system and included in monitoring statistics. D. There were weaknesses in the system for identifying problems and solutions. Health Workers and facilities were doing a good job of identifying challenges in the PMTCT system as well as the solutions that had worked, but there was no systematic way of collecting this information in EGPAF-supported districts. For example, the stakeholders suggested that the assessment team look at EGPAF supported facilities that were doing well in contrast to those that were doing poorly. The assessment team found that this was an effective strategy for learning lessons about PMTCT. It would be better, however, if the MOH PMTCT team had a routine method for assessing program implementation. The MOH had excellent guidelines and standards for ART service facilities but needed to be able to identify solutions to possible problems. For example, an ART site must have medical doctor on staff. The assessment team visited one ART service clinic that had lost its doctor but had arranged with another facility to have a doctor rotate in each week. Another site had received MOH accreditation as an ART site but could not start services because they were still waiting for ART drugs. At present CDC does an excellent job of collecting information about implementation of the programs they assist as well as other research on appropriate treatment regimens. For example, they were collecting information on women who didn’t accept testing or didn’t come to learn their CD 4 count. The MOH should consider having a team that could explore Page 27 the PMTCT service delivery issues (not the clinical issues) and provide feedback to those working on PMTCT.7 E. Formal collaboration with organizations offering complementary HIV services helped in integration and maximized uptake of linked services. EGPAF had signed a memorandum of understanding with JCRC to provide laboratory tests especially CD4 cell counts and ART to those PMTCT clients who were eligible. EGPAF agreed to refer pregnant clients to JCRC facilities thus relieving JCRC of the need to recruit these clients. This relationship had greatly increased the number of clients receiving ART. Other services such as Nutritional support came out prominently in interviews with clients. TASO and World Food Program had nutritional support components and worked in some facilities where EGPAF is present. Collaboration with these groups could help address this need. Clients also expressed the need for financial services and income generating activities (IGA) and EGPAF could explore mechanisms for linking clients. 4 RECOMMENDATIONS 4.1 To USAID 1. Support to personnel and commodities were key issues in the success of the PMTCT program though USAID does not support it. USAID should support these key elements in future programs. 2. Government health systems are still weak especially at implementation level; any effort to improve PMTCT service provision must address the fundamental weakness in implementation before PMTCT services can be maximized. Expand care and treatment services, make them convenient, and provide them at affordable cost. 3. Efforts should be made to ensure adequate levels of collaboration with organizations offering support services such as nutritional support components and income generating activities early in PMTCT program implementation. 4. Emphasis should be laid on follow up and ARV prophylaxis for babies since this remains the weakest programmatic link in the PMTCT 5. Support to PMTCT programs should emphasize innovation of effective interventions that promote male participation 6. There is need to include the private-for-profit sector in programming as this is necessary for improvement in coverage, quality and reporting of PMTCT services. 4.2 To EGPAF 7. Continue to help improve the system for reporting and replenishing stock outs. 8. Develop mechanisms and activities to answer questions about program effectiveness. 7 See for example, Freddy Perez, et al. al. Prevention of mother to child transmission of HIV: evaluation of a pilot program in a district hospital in rural Zimbabwe. British Medical Journal, 2004;329:1147-1150 (13 November) Page i 5 Appendices Appendix A Evaluation Scope of Work A. The purpose of the evaluation remains the same i.e. (1) to assess programmatic effectiveness of EGPAF and (2) To assess opportunities and constraints for integrating PMTCT activities with HIV care and treatment programs, improvement of maternal and child health systems and a specific focus on strengthening child survival and family planning and ongoing malaria programs. The evaluation will validate existing evidence (mainly from EGPAF reports?) regarding the degree or level of effectiveness of the EGPAF programs. Strengths and weakness of the program will be identified and documented. This will address the concerns of the stakeholders that attended the meeting at EGPAF in which the Evaluation Team presented their evaluation plan. (As you may recall the majority of the stake holders argued that EGPAF has been effective and proposed that the evaluation should concentrate on assessing factors that contributed to the EGPAFs success.) B. Key evaluation questions are as follows (provide feed back): 1. To what extent has EGPAF achieved its overall goal and results in Uganda? Assess the factors that facilitated and/or hindered its achievement of planned results. Please include a discussion of how the CTA design and implementation by EGPAF Uganda affected the following: -Service Delivery – quality, access, utilization, integration. -Training and Supervision – Impact on national policy and systems for training, supervision and capacity building; training linked to service delivery. - Efforts to integrate PMTCT with HIV care and treatment services for adult, as well as pediatric patients, with reproductive health /FP and ANC/ maternal health services. -Support to district and facility level monitoring and evaluation systems to capture and report necessary information. -EGPAF project management with specific focus on decentralized approach, grants to districts and associated strengths and challenges. -Relationships with MOH and other key-implementing partners. 2. Did the CTA project yield any unintended results, whether positive or negative? What factors can such unintended results be attributed to? 3. What opportunities/constraints exist for future support for integrating PMTCT with HIV care and treatment services for adult, as well as pediatric patients, with reproductive health /FP and ANC/ maternal health services? C. Evaluation methodology: At the meeting at EGPAF with stakeholders, it was agreed that the team should compare poorly performing EGPAF sites with strong EGPAF sites. Is the team doing this comparison? Assessing service delivery- the Team should also assess whether there was -service delivery at the community level, the extent to which facility support and children's support groups promoted community level services, linkage of facility with community services D. Focus Group Discussions. The Team will to hire a firm to carry out the FGDs. Page ii Appendix B Stakeholders Meeting (10-May-07) Participant List Name Title Organization Ministry of health Dr Madraa Elizabeth Program Manager ACP/STD MOH Dr Saul Onyango National PMTCT Coordinator MOH Dr. Godfrey Esiru Program Officer/M&E and Training MOH Justine Nankinga Program Officer/M&E PMTCT MOH District Health Services Dr Sarah Byakika Principal Medical Officer Jinja District Mary Betubiza DNO (DDHS Rep) Kabale District USAID Sereen Thaddeus RH Advisor USAID Rhona Walusimbi M&E Specialist USAID CDC Jako Homsy Technical Advisor CDC Margaret Achom PMTCT Advisor CDC Elizabeth Glazer Pediatric AIDS Fdn (EGPAF) Esther Sempira M&E Officer EGPAF Sajedul Talukeder Contract/Grants Officer EGPAF Atwine Brenda Finance Officer EGPAF William Salmond Country Director EGPAF Fred Kagwire Technical Advisor/PO EGPAF Bitarakwate Edward Program Manager EGPAF Rita Larok Program Officer EGPAF Joy Angulo Program Officer/FGS EGPAF Kobusingye Agnes TA/Program Officer EGPAF Implementing Partners Michael Kabugo TREAT Coordinator JCRC Joyce Matovu Program Coordinator MU/JHU Yolanda Mikaele Deputy COP SCMS Penninah Itung Medical Director Uganda Cares Samson Kironde COP UPHOLD Kojo Lokko COP AFFORD Bassani Luciana HIV/AIDS Coordinator AVSI Evaluation Team Members Herbert Kadama Consultant MEMS/USAID Mary Namubiru TA/Program Officer EGPAF Anne McCauley Senior Advisor USAID Regional Office/Kenya Helene Rippey Consultant MEMS/USAID Augustine Wandera M&E Specialist MEMS Page iii Appendix C Key Persons Interviewed 7 May 2007 William Salmond, Country Director, EGPAF Edward Bitarakwate, Program Manager, EGPAF Sajedul Talukder, Contracts Compliance Officer, EGPAF 9 May 2007 Dr. Saul Onyango, National PMTCT Program Coordinator, MOH Namagala Elizabeth, Sr. Medical Officer/ACP, National ART Program Coordinator, MOH Justine Nankinga, Program Officer/M&E, PMTCT/MOH Michael Kabugo, TREAT Project Coordinator, JCRC 10 May 2007 Dr Esiru Godfrey, Program Officer, Monitoring and Evaluation in PMTCT, MOH 16 May 2007 Zimei Sylvia, Midwife, PMTCT Site Coordinator, Magale HC IV Name Missing, In-charge, Magale HC IV Richard Acting, In-charge, Bugobero HC IV Akurut Jane Acting PMTCT, Site Coordinator, Bugobero HC IV Esther, Member of Family Support Group, Bugobero HC IV 17 May 2007 Dr. Francis Abwaimo, DHO, Mbale Dr Mike Kagawa, District PMTCT Coordinator Dr John Bosco Wamai In-charge Busiu HC IV Agnes Khalai Khatsitsi PMTCT Site Coordinator Busiu HC I Margaret Wankina, Midwife, PMTCT Focal Person, Magale 17 May 2007 Dr. Sarah Byakika, PMTCT Coordinator Jinja Lillian Ejang, PMTCT/MCH In-Charge Bugembe HC4 Faith Keneko, Medical officer/Acting In-Charge Bugembe HC4 Hajira Nabuwame, FSG Chairperson, Bugembe 18 May 2007 Sereen Thaddeus, Senior Advisor, USAID Elise Ayers, Senior Advisor, USAID Dr. Charles Kalumuna, Rose Kaneene, Nursing Officer Proscovia Alakoba, Sr. Nursing Officer Page iv Rose Nalule and Issac Abedi peer mother and father for Jinja Hospital PMTCT 20 May 2007 Joyce Matovu, Coordinator for PMTCT Mulago/Mengo/Rubaga 0772 429 000 Stella Nansanga Ass’t Chair, Mulago FSG, Rebecca Nansubuga Chair 0753 17 76 99 21 May 2007 Dr Zikulah Namukwaya Medical Officer 0772 446 006 Jane Ssebagla, PMTCT Mulago Site Coordinator 0772 55 11 82 Dr Phillipa Musoke 0772 429 289, Pediatrician/Investigator, Joyce Matovu, Coordinator for PMTCT Mulago/Mengo/Rubaga Hospitals Professor Francis A. Miro, MD, MU-JHU, Principal Investigator, 0782 669 598 Dr. Mary Glenn Fowler, MD/MPH, MU-JHU Research Collaboration 0782 972080 Dr. Fred Kagwire, Program Officer/Technical Advisor Eastern Region, EGPAF 22 May 2007 Dr Bukenya, Medical Director, PMTCT Prog. Director, Mengo Hospital Dr. Nathan Tumwesigye, HIV/AIDS Technical Advisor ANECCA Secretariat 0772 700 680 Richard Oketch, Project Officer HIV/AIDS Care and Treatment, UNICEF 0772 089 363 Joy Angulo, Program Officer/FGS, EGPAF 24 May 2007 Agnes Kobusingye, Program Officer-South Western Uganda, EGPAF 25 May 2007 Jako Homsy, Technical Advisor, CDC Florence Kitabire, Technical Advisor PMTCT, CDC 30 May 2007 Dr Elizabeth Madraa, Program Manager, MOH ACP/STD Page v Appendix D Interview Guides and Tally Sheets A. Central MOH Staff Interview Guide 1. What are the main achievements of the EGPAF program? What enabled these achievements? 2. Please tell us how ANC/PMTCT services have changed over time. Elements might include: a. Design or management model (work with districts) b. Choosing partners c. Expansion of service d. Integration of services e. Emergence of program support (buffer stocks/safety net for staff, commodities, renovation, etc) f. M&E system 3. How has been the working relationship between EGPAF and the MOH? 4. What is your impression of EGPAF’s working relationship with other partners? 5. What has been the major contribution of EGPAF to the MOH PMTCT national program? 6. What factors facilitated or hindered EGPAF to in their performance? 7. How did project supported training and supervision at national level contribute to achievement of goals and results? 8. How did EGPAF support for integration of PMTCT with HIV Care and Support services contribute MOH goals? 9. Are you aware of any unintended positive or negative results that came out of the project? 10. What are the best practices learned from the project? Of these best practices which would the MOH like to adopt? 11. What recommendations would you make for future USAID assistance to MOH PMTCT program? Page vi B. District MOH Interview Guide Respondents: DHO and district PMTCT coordinator 1. What are the main achievements of the EGPAF program in the district? What has enabled these achievements? 2. Please tell us how ANC/PMTCT services have changed over time. Elements might include: a. design or management model (work with districts) b. Choosing partners c. Expansion of service d. Integration of services e. Emergence of program support (buffer stocks/safety net for staff, commodities, renovation, etc) f. M&E system 3. How has been the working relationship between EGPAF and your district? 4. How has the grant process worked? 5. What has been the major contribution of EGPAF to the district PMTCT program? 6. What factors facilitated or hindered EGPAF in their performance? 7. How did the project supported training and supervision at the district contribute to the achievement of your goals and results? 8. Is there other ways EGPAF assistance has helped your district (commodities, vehicles, renovations, staff salaries…………..)? 9. How did EGPAF support for integration of PMTCT with HIV care and support services contribute to your district goals? 10. How has family support groups and children clubs contributed to the PMTCT program in your district? 11. Are you aware of any unintended positive or negative results that came out of the project? 12. What best practices have learned from the project? 13. What recommendation would you make for future EGPAF assistance to the district PMTCT program? Page vii C. EGPAF Staff Interview Guide 1. What were the main achievements of EGPAF project? What enabled these achievements? Program Director 2a. What are the Goals? 2b. What are your sources of funding? 2c. How has been the working relationship between EGPAF and the MOH? 2d. How has your working relationship been with other partners? Program Manager (Technical) 2a. Can you describe your program design and management model? 2b. How has been the working relationship between EGPAF and the MOH? 2c. How has your working relationship been with other partners? Contracts/Grants Officer 2a. What is the process for selecting and awarding grants? 2b. How is compliance monitored? 2c. How has been the working relationship between EGPAF and the MOH? 2d. What is your impression of EGPAF’s working relationship with other partners? Program Officers 2a. Probe for perspectives on training, logistics management, technical support, M&E. 2b. Is there anything specific about your region that impacts the performance in the region. Program Officer in charge of Psychosocial Support 2a. Evolution of PSS in project 2b. What are the activities in PSS? 2c. How have FSG contributed to the overall performance of the program Operations Manager 2a. What is the system and your role for logistics procurement and distribution of medicines and other program related supplies. 2b. How has been the working relationship between EGPAF and the MOH? 2c. What is your impression of EGPAF’s working relationship with other partners? 3. Discuss integration of PMTCT (including HCT, infant feeding) into MCH services (which should already have malaria/ FP integrated) at the facility level. Integration of HIV/AIDS Care into PMTCT/MCH at facility level Program efforts to strengthen uptake of FP and malaria prevention tools 4. What have been your major challenges during the project period? 5. What recommendations would you make for future USAID funding of PMTCT programs? Page viii D. Health Facility Observation Checklist During tour of the facility please note the following Observation 1 Educational materials available 2 Provider job aides available 3 Infrastructure (MCH lab/counseling rooms) 4 PMTCT registers available and being used 5 Test kits available 6 NVP (tablet and syrup) 7 Family Planning Commodities Page ix Appendix E Focus Group Discussion Report Report on Focus Group Discussions conducted as part of a study to evaluate EGPAF supported PMTCT Services Submitted to MEMS-USAID Uganda 12 June 2007 Submitted by Wilsken Agencies Ltd P.O. BOX 25468, Tel: 077 2528503 / 256-41-266111 Makindye Lukuli Road. Page x Executive Summary This report is a presentation of the results of a qualitative study that sought to get an understanding of clients’ perception of PMTCT services delivered, opportunities for and challenges faced in its implementation. The findings will guide the Ministry of Health and the the Elizabeth Glazier Pediatric AIDS Foundation –Call to Action a USAID supported project in improving the delivery of PMTCT services in various health facilities. Wilsken Agencies Ltd was contracted by MEMS and conducted the study between the 16th and 22nd of May 2007. The study was conducted in hospitals and health centre IV’s in Kampala, Jinja and Mbale districts. Methodology: A total of 12 Focus Group Discussions (FGDs) were conducted. The target participants were health workers involved in the delivery of PMTCT services and clients who are the beneficiaries of the PMTCT services. Focus groups were used to dig deeper with flexibility people’s perceptions, attitudes and preferences among clients of PMTCT services and Health workers involved in the delivery of these services. There were 12 participants per group and each group lasted between 1 hour and 1 hour and 30 minutes. Overview of the Findings Service routinely received Services Offered: Both the health workers and clients reported that a variety of PMTCT services were being received by the clients at the different health centers visited. These services included testing for HIV/AIDS, counseling, physical examination, providing; information about infant feeding, IPT dose, Iron/Folic acid, and health education. Reasons for Missing PMTCT services: Health workers in the health centre IV that were visited reported that clients at times missed out on drugs due to drug stock out. In other instances, the reason for missing out was due to many clients coming for services. The clients who missed due to increased number of expectant mothers received the service on the subsequent visit which was normally the next day. While those who missed due to drug stock out were advised to obtain from private health providers or the referral hospital. Preferred PMTCT Services: When clients were asked what they liked most about PMTCT service majority mentioned testing for HIV/AIDS. They preferred this not only because they got to know their sero-status but also because it was free and results were got immediately. Page xi They also mentioned protecting of the un-born baby from catching HIV/AIDS, getting health education and care from the health workers among other things. Issues disliked about PMTCT Services: Clients disliked waiting in crammed rooms for long to access PMTCT services. This was the most frequently mentioned dislike. However, there were others mentioned which were to a small extent, like; to the health centre distance, being attended to by student nurses and being asked to buy drugs from private health providers. Change in work since inception of PMTCT Services: Health workers were asked what changes they have experienced ever since the inception of PMTCT. They all mentioned increase in clients seen daily. They also mentioned that they currently had more information in regard to health issues the PMTCT package addresses. Challenges in PMTCT delivery: Health workers reported drug stock out and increased work load due to the influx of clients as very big challenges they currently face. PMTCT Committee: All the health centers visited had a PMTCT committee which met at least once a month except in Jinja main hospital where it did not meet regularly. In the meetings they discussed issues pertaining to PMTCT service delivery and how it could be improved. Integration and Referrals: When clients were asked whether they were being asked to com back to the health centre out of the routine Ante-Natal Care check up majority said they were never asked. Like wise they reported that they were never referred to other health providers. However, when the health workers were asked whether they referred clients to other health units they responded in affirmative. They said that for all those services that they could not provide like CD4 count, psycho-social support and cases of discordant couples they refer them to JCRC, TASO or the referral hospital. Respondent recommendations: Health workers recommended increased training, number of staff, and staff facilitation and motivation in order to improve PMTCT service delivery. They also noted and need for enlargement of the health care units, constant delivery of drugs, and provision psycho-social support, nutrition and monetary support. Page xii Like health workers, clients also recommended an increase in the number of health workers helping with the PMTCT program. They also mentioned a need to provide ambulances, reduce cost of services especially labor for non government units and also a stock up of drugs. Tracking of PMTCT services: Clients reported improvement in the attention they get from the health workers since the inception of PMTCT services. They also mentioned extra services which include HIV testing, care and support, and privacy in dispensation of services. Conclusion: On the whole the PMTCT has led to improved service delivery; more expectant mothers are now frequenting health facilities to get services. This is because they can get free services like HIV testing, post test services among others. Page xiii 6 1.0 Introduction: The Ministry of Health and the Elizabeth Glazier Pediatric AIDS Foundation –Call to Action a USAID supported project is working to improve the delivery of PMTCT services in various health facilities. This is an on going program and therefore sought to get an understanding of clients’ perception of the Prevention of Mother to Child Treatment (PMTCT) services being delivered and opportunities for and challenges faced in implementing the PMTCT program among the health workers. Wilsken Agencies Ltd was contracted to conduct the study in Kampala, Mbale and Jinja. The study was conducted between 16th and 22nd of May 2007. The data gathered will inform us on the PMTCT services provided, most liked PMTCT services, changes since inception on the program, integration and referrals and likely improvements. This report is a presentation of the Focus Group Discussion study findings it is presented in three sections that include section I; the introduction and the other sections present the findings. Section II; health workers in Mangale and Bugembe, Section III; Health workers in Bugobero and Jinja Main Hospital, Section III; Ante Natal Care (ANC) clients in Mangale and Bugembe health centre IV, and section V; clients in Bugobero and Jinja Main Hospital. 6.1 1.1 Methodology: A qualitative methodological approach was used to collect primary data from the target audience using Focus Group Discussions (FGDs). Focus groups were used to dig deeper with flexibility people’s perceptions, attitudes and preferences among clients of PMTCT services and Health workers involved in the delivery of these services. A total of 68 mothers and 4 males attending the Antenatal Clinic were talked to in addition to the 67 Health workers. Participants in the client FGDs were recruited on the day of the interviews while the health workers were informed a day before the interview. Each focus group was under the guidance of a well-trained moderator who had a discussion guide that was designed in consultation with the client. (See appendix) The discussions were captured both manually by a note taker and electronically by means of a recorder. 6.2 1.2 Study Area The study was conducted in three districts of Uganda that included; Kampala, Jinja and Mbale. Prior to actual data collection the instrument were pre-tested in Rubaga Hospital, Kampala district. In the districts one hospital and a health centre IV were visited. In each location two Focus Group Discussions were conducted one with the Health workers and the other with clients of PMTCT services. Page xiv 6.3 1.3 Participants Selection Using the health centres’ network participants for each Focus Group Discussion was recruited. Participants in the Health workers group were those who were in a way charged with the delivery of PMTCT services, while in the client group we had persons who had come to receive ANC services on the day of the interview. 6.4 1.4 Data Collection A one-day orientation session was conducted with moderators and note takers. The orientation involved an overview of the PMTCT program, understanding of the required task, research objectives and methodology, review of FGD guide, scope of work and time frame, data collection and transcribing and data analysis. Prior to data collection the instruments were translated into three local languages which included Luganda, Lusoga and Lumasaba. All client interviews were conducted in the local dialects and the health work discussions were conducted in English. Page xv 7 FINDINGS 8 Section II: Mangale and Bugembe Health centre IV 8.1 2.1 Service routinely received 2.1.1 Services Offered When they come here (Clients)…have general health education. After education, we register them; take them for testing and counseling. …, they are taken in the examination room but still in the examination room, there is an on going counseling on malaria and nutrition, they are examined, tests are for malaria, urine, blood pressure, blood for HIV test is taken and after examination, they wait for the results to come out. After the results they go post test counseling individually depending on the results. But for the post test counseling, we counsel them about nutrition, infant feeding, health and hygiene but still if the results are positive, we give them drugs, advice on health, feeding especially infant feeding and from there, they go for immunization and after that we make next appointment. This was a break down of the services offered to the clients when they attended the ANC clinic in Bugembe health center. The account given in the unit is a replica of what happens in Mangale health centre though the latter is a mission hospital. The health centers were required to provide physical examination, blood testing, counseling, IPT doze, iron tablets, family planning information, infant feeding, and in some instances provide free bed nets. All the above services were being offered by the health units visited save for the free bed net. 2.1.2 Reasons foe Missing PMTCT services The most mentioned reason for clients missing out on some of the PMTCT services was drug stock out. Some times we don’t have enough services, drugs are out of stock, and we tell them to get them elsewhere reported a health worker in Mangale. Likewise a health worker in Bugembe stated thus; some times we don’t have enough services for example testing kits… mothers are many and the testing kits are missing when we run out of stock. In Mangale the health workers reported that early this year they ran out of ARVs and therefore the clients who are People living with HIV/AIDS (PLWHA) were always advised to find private ways of accessing them. Respondents also reported that at times clients miss out because they are on a rush and cannot wait to have the entire day’s package of PMTCT services. Page xvi 8.2 2.2 Change in work since inception of PMTCT Services An influx of patients due to the PMTCT service has led to an increase in the work load for the health workers. The influx is because some of these services are frees as explained by a health worker in Mangale which is a disservice to the program because the facilities are not equipped to handle the large numbers. There are however, other good changes like increase in the knowledge of the health providers. This newly acquired knowledge has helped the health workers to provide better services and also improve on their resume. Some health workers were trained in preparation for the PMTCT and therefore pass on the information to others. The health workers now offer more services than they used to. A health worker in Mangale said that before we were not giving counseling but this is a service that is currently available just like in Bugembe. We have also acquired more and improved knowledge even our CVs are big (Client, Bugembe) In one way it has helped because before we were handling mothers any how but now we know how to handle them (Client, Bugembe) 8.3 2.3 Challenges in PMTCT delivery Participants reported that some of the challenges they face in delivering these services are drug stock outs. This was the most pressing problem for health workers in Mangale. They noted that the probable reason why patients come to the health centers is because they can get treatment if diagnosed with an ailment however, the drug stock out might discourage them. Getting shortage of ARVs (Health worker, Mangale) In Bugembe the biggest challenge was lack of space to accommodate the ever increasing number of clients attending the ANC client. The influx of clients was not in consonance with the available space and thus space became a challenge to the facility. Yes we lack space. The space is small and lack seats (Health worker, Bugembe) Page xvii 8.4 2.4 PMTCT Committee PMTCT committees in these health centers met once every month and they discuss issues that aim at improving on the delivery of services. In Bugobero the health workers said that; we address peoples (Health workers) problems like we previously talked about the payment. In addition they look at different department reports and try to address the concerns raised. However, in the group at Bugobero were health workers from Busui health centre III whosaid that they did not have a PMTCT committee. The committee meets once a month (Health worker, Mangale) We meet once in every month (Health worker, Bugembe) We discuss reports from the different sections (Health worker, Mangale) Some times we want to go for outreaches but we lack transport so every time we meet with the director, we foreword (Health worker, Mangale) How to improve on the negative things (Health worker, Bugembe) We discuss reports from the different sections (Health worker, Mangale) 8.5 2.5 Integration and Referrals Referrals were only made for those services which were not available in the given facility. These services included taking the CD4 count, psycho-social support and also the discordant couples. These different clients were referred to different organizations that include The Joint Clinical Research Center (JCRC) and TASO. Specifically the CD4 count was done in JCRC like help for the discordant couples while clients were referred to TASO for psycho-social support. We take clients blood to the JCRC for CD4 count (Health worker, Mangale) We refer those discordant couples to TASO (Health worker, Mangale) The HIV positive ones need things like psychosocial support such as school fees, food so we refer them to other organizations like TASO (Health worker, Bugembe) Page xviii 8.6 2.6 Respondent recommendations: Respondent made some recommendation that they think will lead to improved service delivery, majority of respondents advocated for increased training. To give us more training as pointed out by a respondent in Mangale was also mentioned in Bugembe. The health worker said; training in especially comprehensive HIV care… some of the staff just got orientation but they need real training. The respondents wanted comprehensive training and not only orientation on the basics of HIV care. Introduction of PMTCT in most health services saw a rise in the size of clientele attending the ANC clinics and there was no proportional increase in the size of health workers. To this end respondents noted that there is a need to increase the health workers handling clients so that the work load is reduced for each individual. Increase number of staff (Health worker, Mangale) Specifically for Bugembe health facility participants noted that there is need for enlargement of the waiting area, counseling room and the labor ward. Our waiting room is small, the counseling room is also small our mothers can’t fit so we need something relatively bigger than that they said. This scenario is attributed to the increased number of clients attending the clinic. Even the antenatal ward is small yet the mothers are many (Health worker, Bugembe) Health worker also proposed improvement in constant delivery of drugs and also if possible provide other kind of support like psycho-social support, nutrition and monetary support like TASO does. The health workers noted that it would be good and heelpful to have all the medicine that they prescribe at the unit. There is need for continuous support in continuous supply of drugs because some mothers you prescribe then after you tell them to go and buy (Health worker, Bugembe) Let say for the positives let us give them some support because they are always comparing with TASO that for us we just give training but no assistance (Health worker, Bugembe) Page xix Appendix F Table of Targets and Achievements Table of EGPAF Targets and Actuals* 2004 2005 2006 2007 Indicator Target Actual Target Actual Target Actual Target Actual** Number of HW trained in PMTCT 323 461 300 1,456 600 1,071 Number of sites supported 46 (22 new) 46 (22 new) 73 100 168 388 240 Number of women new ANC visits 71,027 124,359 160,000 214,284 249,000 142,203 Number of women receiving counseling 61,525 150,100 117,434 144,000 204,443 211,500 143,814 Total number of pregnant women tested 500,000 41,647 91,177 115,200 166,003 170,000 123,825 Number of pregnant women receiving results 89,677 82,080 160,338 170,000 120,929 Number tested HIV positive 4,506 7,515 7,344 11,286 12,041 8,230 Number of women receiving full course ARV 3,356 7,295 5,250 5,141 8,135 8,299 6,798 Number of babies receiving ARV prophylaxis 1,926 3,504 4,441 5,708 7,104 3,838 Percentage women counselled 90.0% 95.4% 90% 93% Percentage women tested 80.0% 78% 80% 86% Pecentage women receiving ARV prophylaxis 70.0% 72% 70% 83% Percentage exposed infants receiving prophylaxis 60% Number sites offering care and treatment 45 53 Number of individuals enrolled in care (inc children) 1763 6,994 5,429 Number of individuals on ARVs 1,959 2,795 Number of HIV exposed infants on CTX prophylaxis 1,517 1,022 Number HW trained to screen/stage for ART eligibility 150 591 170 Number linked with ART services 4,406 4,432 Number HIV+ preg women screened/staged 3,762 5,740 3,102 4,315 Number HIV+ preg women enrolled in ARV treatment 1,763 1,108 1,871 Number of HIV+ mothers initiating/planning EBF 4,195 3,456 Number infants replacement feeding 739 472 Number infants EBF at 6 months 804 412 Number infants tested 1,967 2,034 Number infants positive 374 259 Percentage infants postive 19% 12.7% Number PMTCT sites with FSG groups 60 60 Number of women attending at least one FSG meeting 1,200 2,300 Number of PSS facilitators trained 400 426 100 Number of HIV+ family members screened or staged 2,732 Number of HIV+ family members receiving HAART 399 * figures from annual work plans and annual reports ** semiannual figures (6 months of data only) Page xx Appendix G Comparison Tables – Poorer/Better Sites Comparing EGPAF Sites Facility Heads Merged Facility Head Interviews: Better- v. Poorer-performing sites 8 Better Performing Sites Poorer Performing sites Achievements of PMTCT Programme HWs trained, ARVs, PSS groups, regular supplies, “work as one family under the programme” VCT in ANC, blood samples sent, HW trained, support with supplies Enabling Factors Cooperation and sacrifice of the HW, good support supervision Supplies attract clients, cooperation of MW, mainly the need for services enabled Benefits of district PMTCT Support Salary support for some staff, Strengthen general supervision, provide test kits, Transfer of samples to JCRC, some equipment and supplies (still inadequate), HW trained and test kits Benefits of EGPAF Support for Training/Supervision Trained 90% of HW, comprehensive training, increased staff confidence Site A: “only 1 person trained”, Site B, “every staff is (trained as) a counsellor”, support supervision Integration of HIV Care and Support facilitated by training, pts linked to on-site ARV clinic Site A: No ARVs, clients referred, Site B: just started ARV clinic on site 2 weeks ago How have FSG affected Services? Site A- TASO outreach but slow, Site B: FSG has increased testing at the site No FSGs at this site, still developing the FSG What worked well C&T, Negative babies, CD4/PCR, FSG Site A: “nothing has worked well. only one HW trained”, Site B: supervision, cooperative mothers, supplies and training What worked poorly Male involvement, FP, infant feeding Follow up of babies and HIV+ mothers, male involvement, Recommendations Train whole facility, home visiting, more mgt staff, bring supplies and drugs to remote areas first to reach greater population, Greater participation of the team, increase transparency, outreaches, involve men, gifts to reward couple testing, home visits, PCR/CD4 on site, supplemental feed support Key findings of analysis of facility head interviews and Focus Group grouped by performance criteria (better vs. poor) shows that better performing sites were more likely to have the following: Higher proportion of total facility health workers trained Salary support to augment staff 8 Criteria for selection of sites was the indicator: proportion of women counseled accepting testing. Those with the lowest and highest figures within the district were defined as poor and better. Page xxi On site ARV clinic Family Support Groups 5.7.2 Comparing EGPAF Sites FGD Merged CLIENT Focus Group Data: Better v. Poorer performing sites 9 Better Performing Sites Poorer Performing sites Knowledge of PMTCT Heard of it, have to stop breastfeeding if pos, gives hope my child will survive Heard of it; prevent HIV to go to baby; can get tx; given tablet in labour and baby is given medicine Services Received All ANC [weight, BP, PE, counsel, vitamin, ferrous, blood tests, Tetanus]how to use drugs, taking NVP and syrup for baby, folic acid, fansidar, mebendazole, tell us what needed for delivery (we buy ourselves), malaria medicine, bed nets All ANC at left plus polio imm,, child care counseling, breastfeeding counseling; STI tx; danger of fever; “mainly the virus they taught us about Knowledge about FP Use condoms, have a manageable family, use injections, agree to leave some days, rubber inserted into the womb Keeping manageable family, condoms, injections, better if you have money probs; good to let the scar rest; Like about services HIV results in few minutes, they tell us to bring our husbands, doctors tell me about medicine, encourage husband to test, in [X] I did not receive my results – here we get them, I like the nurses- they are not rude. will help my child to survive even if I die, Medicines, nets, counseling Wanted to test for HIV and am happy know my status; they told me the truth – they taught me I must take car of the child like this Didn’t like about services Sometimes no drugs- we have to go buy them; student nurses sometimes just guess, far from services, they say bring husband he refused; if infected buy milk-no money; lack of space and furniture; nurses haven’t told me the truth yet; urinals are bad; we have to buy supplies; they used to be rude now improved Slow in serving us; buying the medicine What about the services has changed since last px Nurses used to be rude, now they are good; Other women tell me things are improving; Here after counseling we see women on an individual basis; privacy in examination and in handling special matters Now they are more serious about testing your blood Why some mothers don’t return for delivery or other services If you are normal – no complications; some are stubborn; husbands don’t give money; You come from far, lack transport; problems at home like losing a relative; some forget; 9 Criteria for selection of sites was the indicator: proportion of women counseled accepting testing. Those with the lowest and highest figures within the district were defined as poor and better. (Magali, Bugembe, Bugobero, Budondo, Busiu) Page xxii only if critically ill can they come back; some don’t want to be known; some are reluctant; transport; time; money Merged HEALTH WORKER Focus Group Data: Better v. Poorer performing sites Better Performing Sites Poorer Performing sites Services Provided All ANC; teach them about AIDS; VCT; health ed; C&T; same day results; IPT; Imm; iron/folic acid; lots of counseling – nutrition, FP, hygiene,letters inviting husband; Arrang CD$ for HIV+ [no mention of routine ANC svcs] Health ed (we have enough seats); tell them about PMTCT; precounselling; palpation; give return dates; HIV+ we give ARV; we advise some to come back the next day; Why might the services not be there Sometimes drugs are out of stock; sometime they only come for FP or imm and say they don’t have time for other services, sometimes we run out of stock like test kits We can’t see all the mothers who come, we can see only 150 we tell the others to come back How has work changed The number of mothers has increased, it’s private, some services are free; now we know how to handle mothers (before we would handle them anyhow); before we did not counsel; we have improved our knowledge￾our CVs are big; the space is small-we lack seats Now we are doing 2 or 3 kinds of work on the same day; MW does outpatient/ANC and now PMTCT she is overloaded; the work is longer hours; allowances now motivate; Extra burden on staff; time on mother has doubled; The work is interesting because of the tng; nurses are suffering Challenges Drug shortages; dividing students? Shortages in test kits and ARVs; we delay to give the card because if you do they won’t come back; run out of stock of expanded ARV so worry about drug resistance; too many registers – lots of writing; no lunch we are dehydrated; we talk a lot because if not they won’t deliver live babies; follow-up is challenge – mothers disappear What referrals are made To JCRC for CD4, discordant couples to TASO; to lab, xrays, PSS, TASO Refer to hospital; TASO; JCRC for CD4; refer for severe anemia or obstructed labor; What needs to improve Increase number of staff; give more training; waiting room now too small; ANC ward is small, mothers are many; need continuous drug supply; We need to have assistance for the HIV+; we need tng in comprehensive HIV care Let us receive more training; More staff; more facilitation; more motivation; we need transport; more sensitization in the communities; we need porridge; We need PMTCT training – we were trained OJT; supply of drugs; folow up to trace the mothers; Comparing Poorer and Better EGPAF Sites The assessment analyzed Facility Head interviews and Focus Group data grouped by performance criteria. Sites were grouped within selected districts according to relative performance on the indicator “proportion of women counselled who receive testing”. Page xxiii Analysis of Facility Head interviews by site shows that better performing sites were more likely to have the following: Higher proportion of total facility health workers trained Salary support to augment staff On-site ARV clinic Family Support Groups Analysis of FGD responses by site revealed that in most areas there were no major differences. However respondents from better performing sites noted: Same day HIV test results (HW and clients liked this) Health Worker attitude had improved (clients) HW felt more empowered, felt more pride in the service and in their increased competence, and complained less about workload. Page xxiv Appendix H List of Training-Related Materials Training-Related Materials Developed with Support of EGPAF The Foundation works with MOH and participates in all technical committees related to PMTCT. They do not develop their own policies/ materials but support MOH in doing so. The committees on which they sit are: The National PMTCT technical committee, this is the overall committee PMTCT IEC sub committee PMTCT training sub committee Pediatric ART sub committee National Policy Guidelines for Cotrimoxazole Prophylaxis for People with HIV/AIDS, April 2005 National Guidelines for the Implementation of Family Support Groups in Prevention of Mother-to-Child Transmission of HIV, September 2006 Early HIV Diagnosis and Care for Infants, Guidelines for Health Workers, September 2006 Policy Guidelines for the Prevention of Mother-to-Child Transmission of HIV, August 2006 Prevention of Mother-to-Child Transmission of HIV, Training Manual for Health Workers, 2006 Pediatric ART Guidelines (will be incorporated in the national ART guidelines now adult only) Integrated Infant and Young Child Feeding Policy Guidelines, (in draft) Children’s Peer Support Group Guidelines, (in draft) IEC Materials and HW Job Aids My HIV Counseling Guide for PMTCT Clients, July 2005 Patient Flow for PMTCT in ANC Patient Flow for PMTCT in Maternal/ PNC Standard Operating Procedures for Peer Psychosocial Support Groups (PSS) Page xxv Appendix I EGPAF/Uganda Organizational Chart ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION ORGANOGRAM Country Director William Salmond Technical Director Edward Bitarakwate Fin & Oper Mgr Julius Mulindwa Contr & Grants Mgr Sajedul Talkuder Tech Mgr, Southwest Mary Namubiru Tech Mgr, Central Doreen Ondo Finance Officer Brenda Atwine Operations Officer Mary Frances Awor Admin Assistant TBH Contr & Grants Officer Jennifer Kiiza Contracts & Grants Officer TBH Technical Advisor TBH M & E Officer Eliab Kajungu Technical Advisor TBH Driver Richard Lwamaza Driver Michael Mukiibi Receptionist Felistas Kauma Janitor Ronald Nsubuga Technical Advisor Agnes Kobusingye M & E Officer Emily Kemigisha Technical Advisor TBH Psycho-social Officer TBH Gardener Ismail Juma Driver Joseph Iga Driver John B Babigumira Driver Jackson Mwesigwa Psycho-social Officer Rita Larok Guard David Lutaya Guard Gilbert Alunga Janitor Rose Mutesi Guard Wilfred Engwau Guard Stanely Isabirye Guard Robert Mugabe Guard John Bisaniko Psycho-social Officer Joy Angulo Stores Assistant TBH Driver TBH Driver TBH Patrick Kitaka Page xxvi Appendix J EGPAF Sub-Grantee List 1. MU-JHU for Mulago, Mengo and Rubaga hospitals 2. World Harvest Mission for Bundibugyo district 3. AVSI for Hoima district 4. Mpigi district 5. Mukono district 6. Sembabule 7. Masaka 8. Rakai 9. Mbarara 10. Kabale 11. Bushenyi 12. Jinja 13. Mbale 14. Iganga 15. Mayuge 16. Kasese Page xxvii Appendix K Papers Written by EGPAF/Uganda Staff Experience with Family Care Model: Linking Prevention of Mother-to-Child Transmission of HIV to Treatment Services. By Edward Bitarakwate, Pediatrician, Technical Advisor. EGPAF Uganda. (Presented at Envisioning the Future Symposium: An International Symposium on Children Affected by HIV and AIDS, The Hospital for Sick Children, August 12th 2006, Toronto, Canada. Transfer of HIV Related Information from Mothers’ Health Records to her Child’s Health Records: Acceptability of Practice in Uganda. By Mary Namubiru, MD/MPH, Technical Advisor EGPAF￾Uganda. (Presented at EGPAF Implementers Meeting, October 2006, Arusha, Tanzania.) Experience with Family Care Model: Linking Prevention of Mother-to-Child Transmission of HIV to Treatment Services... By Edward Bitarakwate and Mary Namubiru. Presented at XVI International AIDS Conference, August 2006, Toronto, Canada Papers presented at the 5th African Conference on Child Abuse and Neglect (ANPPCAN) held from the 27th- 29th March, Kampala, Uganda: Prevention of Mother-to-Child Transmission of HIV: The Family Care Model. Presented by Mary Namubiru Pediatric HIV/AIDS Clinical Mentorship Program: Breaking the Barriers of HIV/AIDS Care for Children in Eastern Uganda. Presented by Fred Kagwire Ariel Children’s Clubs, an Effort to Increase Interactions with HIV Infected and Affected Children. Presented by Rita Larok Page xxviii Appendix L Data Tables EGPAF, USG, NATIONAL 4 YEAR SUMMARY Reporting PMTCT Cascade Data - Summary 2004 NATIONAL* USAID CDC DOD USG other** USG Total*** Number of women accessing ANC services 323,941 179,652 4,067 113,860 183,719 Number of women receiving counseling 252,596 143,586 3,575 87,779 147,161 Total number of pregnant women receiving testing services 159,089 95,185 2,361 57,145 97,546 Number of pregnant women receiving results 78,285 2,331 40,327 80,616 Number tested HIV positive 14,594 8,177 229 4,163 8,406 Number of women receiving ARV prophy (full course) 8144 5,905 113 3,131 6,018 Number of babies receiving ARV prophylaxis 4861 2,665 71 1,039 2,736 Reporting PMTCT Cascade Data - Summary 2005 USAID CDC DOD USG other USG Total Number of women accessing ANC services 369,894 365,892 45,530 287,282 411,422 Number of women receiving counseling 317,352 290,327 37,898 211,051 328,225 Total number of pregnant women receiving testing services 219,550 187,644 26,743 120,075 214,387 Number of pregnant women receiving results 181,955 26,701 119,200 208,656 Number tested HIV positive 17,784 14,611 2,331 8,442 16,942 Number of women receiving ARV prophy (full course) 11,117 7,772 1,301 3,832 9,073 Number of babies receiving ARV prophylaxis 6,611 5,068 677 2,241 5,745 Reporting PMTCT Cascade Data - Summary 2006 USAID CDC DOD USG other USG Total Number of women accessing ANC services 495,182 334,262 120,874 1,054 241,711 456,190 Number of women receiving counseling 447,491 299,079 51,043 1,054 142,432 351,176 Total number of pregnant women receiving testing services 332,859 228,553 44,637 987 104,760 274,177 Number of pregnant women receiving results 224,699 43,891 954 102,396 269,544 Number tested HIV positive 24,489 15,650 4,380 91 8,558 20,121 Number of women receiving ARV prophy (full course) 17,923 9,966 3,089 53 5,372 13,108 Number of babies receiving ARV prophylaxis 10,176 6,666 1,597 13 2,846 8,276 Reporting PMTCT Cascade Data - Summary 2007 USAID CDC DOD USG other USG Total Number of women accessing ANC services 185,110 35,444 72 78,423 220,626 Number of women receiving counseling 180,832 25,028 72 62,118 205,932 Total number of pregnant women receiving testing services 153,791 23,697 69 53,732 177,557 Number of pregnant women receiving results 150,733 23,104 62 52,970 173,899 Number tested HIV positive 10,489 2,212 16 4,505 12,717 Number of women receiving ARV prophy (full course) 7,907 1,645 8 2,744 9,560 Number of babies receiving ARV prophylaxis 4,377 886 0 1,425 5,263 * National includes USG TOTAL - figures not official ** "USG other" does not include EGPAF *** "USG total" includes EGPAF figures Page xxix Appendix M Tally Sheet FACILITY HEAD What are the main achievements of the PMTCT Programme at your facility? Megali Bugembe Bugobero Budondo Busiu Identify HIV+ mothers & children PMTCT that started HCT service here There is VCT in ANC and maternity ward EGPAF paid 3 staff then taken up by Gov C&T in MCH dept Develop PSS against stigma ARVs on site Home visiting is done to some clients Reporting system with a lot of supervision. transportation of samples to JCRC and client to ARVsite Formed groups for support now we are getting negative babies Transportation of blood samples to JCRC Mbale Supplies were there: NVP. test kits, gloves The client receives septrin, multi-vitamins, counseled on condom use and infant feeding Health workers have learned a lot, PMTCT program trained the staff When MOH supplies stocked we have some lots of training (PMCT, infant fdg, etc) Stronger linkages between district and HC – we are now one family because of PMCTC We used to do VCT and were only getting half to come. Now with RTC it is 100%. • scale up to 6 sites • Infection prevention materials, • test kits, NVP tabs and suspension to cover gaps when MOH runs out of stock. • improved our capacity to implement the program • utilization higher Counselling rooms – partitions What has enabled these achievements? Megali Bugembe Bugobero Budondo Busiu Cooperation and sacrifice among the health workers—they are willing to take over from each other Support supervision is not like inspection anymore. The need for the service enabled it happen availability of supplies attracts women (test kits, NVP) Appreciate EGPAF and logistics- Allowances to people who go out to do sensitization—health workers are given a reward We work as a team and are empowered Cooperation of the midwives. Also all mw have been trained in dispensing NVP, • Training of staff, • Support staff for outreach activities, • technical support by EGPAF program officers and supports supervision by the district officers Continuous supervision— kept their performance high when the doctor left PCR/CD4 testing makes it possible to care for people properly. drugs available on the shift to the covering midwife who keeps the key Availability of funds Support for human resource/ salary support Commitment of staff at EGPAF office and district officials EGPAF continued technical and programmatic support Page xxx 1. Please tell us how ANC/PMTCT services have changed over time. Megali Bugembe Bugobero Budondo Busiu changed pt flow to keep mothers in MCH unit Growth: Staffing at EGPAF increased over time and this enabled them offer more regular technical support to districts No stock outs x 1 year EGPAF now supports more sites from the initial regional hosp Trained and equipped to give ARV 2 wks ago Services Expanded services from the ANC clinic now to labor, PNC, care and support, CD4 and initiation of HAART 2. How has your facility benefited from district support for PMTCT? What problems have you encountered? (Commodities, vehicles, renovations, staff salaries) Megali Bugembe Bugobero Budondo Busiu General supervision in all areas Test kits facilitating transportation of samples from here to the JCRC lab in Mbale blood pressure machines delivery instruments sterilizer. INF prevention glasses chloramines tablets. TV not yet delivered supplies: IEC materials, fuel, NVP,Test kits Commodities? Organized by the district but they have stock outs salary support 2 MW and 1 lab tech but now covered by MOH Supporting meetings at the site and district PROBs: supplies like septrin and gloves etc. are inadequate. staff have no accommodation Transport of pts: clients buy fuel Transport of staff. No outreaches – no fuel. PROB: disclosure is still a big challenge Transport—constrained— not getting support from the district, some support from Egpaf, need better transport Clients can now get the service they expect supply of test kits and NVP tabs/suspension Salary support for one staff member but they don’t know who can take over that person Training of the PMTCT coordinator General supervision in all areas 3. How has your facility benefited from PMTCT training and supervision? Megali Bugembe Bugobero Budondo Busiu Trained 90% of staff who work on the program Streamlining – we are now getting whole package in one training including PSS. Original tngs were on HIV care only, now inf feeding and counselling Only one person was trained formally others have learnt through CME sessions Now everyone is a counsellor here. Every client is counseled for HIV. 14 people were trained 3 trainings counseling PMTCT for nurses and m/wives testing for lab and m/wives comprehensive HIV/AIDS care Staff given more confidence, they are encouraged and can help clients better Training has been comprehensive, not vertical so we have beefed up our knowledge base and we get better as District level supervision about PMTCT is quarterly. help us deal with problems. Page xxxi we use it. 5 staff trained MOH supervision not there. Monthly reporting. MWs can do staging now but we need more training – 3 have been trained in comprehensive care plus clinical officers 4. How have HIV care and support services been integrated in the PMTCT services at your facility? Megali Bugembe Bugobero Budondo Busiu Trained people in PMTCT, ANC, MCH, pts are linked to ART clinic The site has no ARVs in house are referred to JCRC and TASO for treatment, however majority do not go there At first mothers HIV+ we referred them to JH In the last 2 weeks we have received ARVs and begun treating here. We could carry out clinical staging FP services are being offered in ANC where PMTCT is a routine service Promote dual protection/ condom use prevention and tx of STI MCH staff—a few have been trained for ART—the rest get on the job training health talks about PMTCT and FP are given in Imm clinic on the wards, OPD and other departments District is slow so integration is slow Follow up is done when clients come back for services Work better as a team septrin for OI prophylaxis Some trained staff leave Home visiting to the HIV positive and negative mothers to reduce stigma. Treatment of their disease conditions/ infections 5. How have family support groups groups affected PMTCT services in your facility? Megali Bugembe Bugobero Budondo Busiu TASO has outreach here, gives training PSS empowers us to help people take action We are still developing it 96 members one an old man coopted – very active TASO slow to respond Increased the number of pts testing at the site overall The number of members is increasing The members help follow up of clients, home visits re adherence and drug side effects EGPAF support pulls the FSG together, give them a free meal The group is attached to the H/U They have helped male involvement Members bring in their friends, reach the outlying people build confidence amongst the clients. Disclosure has also been improved. We have couples regularly attending the group meetings which is not seen in ANC Groups have affected services—brings in more people to MCH The groups attract other clients reduces stigma. Compared to VCT these groups have managed to reduce stigma “NOT AFFECTED OTHER SVS” • Screen for HAART eligibility • Baby HIV testing • Repeat CD4 every 4-6 months Page xxxii 6. Are you aware of any unintended positive results of the PMTCT programme? Megali Bugembe Bugobero Budondo Busiu PMTCT trainings have helped generally so now someone can work everywhere. program has led to increased ANC attendance and FP clients More people are tested now in VCT as well as PMTCT It is a blessing [to have the supplies} to be able to provide good services We’ve gotten experience to manage these clients with having the necessary unintended negative results of the PMTCT programme? Megali Bugembe Bugobero Budondo Busiu Many don’t want to come—they don’t want to know new clients take a long time and it adds time. Human beings—may think that the HC is just trying to get more resources. Single dose NVP and raising resistance – Women in ART clinic— feel healthy and get pregnant Uncertainty and risk of failing clients. if programme ends how does PMTCT go on? support for outreach and f/u of mothers so they are not lost and we increase delivery at the site. 7. What has worked well in your PMTCT programme? Megali Bugembe Bugobero Budondo Busiu FSG Helped mothers to cope C&T, Nothing has worked well adequate supervision, regular meetings, Team work - the staff working relationships are very good Helped with breastfeeding, knowing other options, more willing neg babies, The program is being run by one person senior midwife cooperative mothers, accept testing and NVP, we give NVP at first contact Integration of services Has made them a better service team CD4/PCR, She runs her program, organizes for outreaches and invites any body at any time if she so wishes. regular supplies – gloves and jik. I saw jik only once or twice before PMTCT came in. Training of lower health unit staff and equipping them with skills to offer HIV/AIDS services Informed decision on infant fdg Training has motivated us. Ability to collect and transport blood samples from lower health units through the HC IV to JCRC sites C&T, Drugs and test kits available What has worked poorly? Megali Bugembe Bugobero Budondo Busiu Family problems due to exposure male involvment Follow -up of babies and HIV+ mothers, Very few deliver here so we don’t know about NVP uptake Discordance is still a challenging issue, many clients out side the FSG especially if the men are HIV negative end up losing their marriages. However for those in the FSG we have managed to Page xxxiii keep them as couples. Hard to reach them with FP—they are already pregnant male involvement. Challenges with data and records management. Can’t link client data with that of other family members and tracking client from one clinic/department to another Mothers rely on breast milk or mixed feeding— cannot afford milk—for more than 6 months We have to transfer mothers to PSS groups and we aren’t sure if they go. Culture still impacts the adoption of new behaviors 8. What recommendation would you make to improve PMTCT services? Megali Bugembe Bugobero Budondo Busiu Train the whole facility as Egpaf does reach all with HIV testing Home visiting There should be greater participation from other members of the team Involving men would simplify the problems. Outreaches also good for increasing male involvment. Sensitization and mobilization programs should continue MOH needs more management staff in facilities and more supervision The site should own the program not only the mid wife special gift to give couples who test together, bar of soap, plates etc. video shows are good tools for community mobilization and sensitization need a set for this facilty Look at remote areas as a priority for drug supplies— they can’t travel to Entebbe to get them so infection continues There should be transparency Home visits to follow up the babies. PCR and CD4 are done at Kakira. It would be good if we could do it here Site should be accredited for ART so no/little need to refer for ARVs Expired supplies –don’t distribute Outreaches should be well programmed and schedules displayed. Supplemental feeds for HIV pos babies. Training of all staff at the facility would also improve quality of services and promote team work Sensitize administrative structure, local leaders Children groups: We have a total of 17 HIV positive children now referred to Mbale hospital • we have staff trained in the care for children with HIV and have attended children club activities in Mbale • With this experience and capacity we can start our own children group 9. (PMTCT FP only) How many staff work in the ANC clinic? How many staff were on duty in the ANC clinic on the last day PMTCT services were offered? How many clients were seen that day? Megali Bugembe Bugobero Budondo Busiu Total of 5, 1 nurse 1 Sr. MW does PMTCT 6 staff 2 on duty 6 MW 2 on duty at a time Yesterday 24 clients but seasonal and up to 40- 50/day in Nov. Everyone does RCT 3new ANC pts today (rain) 9 yesterday TBAs who come to facility for experience We share work with other staff members, Nurses come to the MCH to offer support or MW move to other departments 25 new ANC mothers/day Page xxxiv with many revisits District MOH Tally Sheet (merged PMTCT Coord and DHO) 14. What are the main achievements of the EGPAF programme in the district? Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU Trainings scale up to 6 sites enabled us to integrate PMTCT services into MCH in district. supporting us with counsellors. EGPAF pays salary. Community awareness (mtgs, Film shows; tapes, generator Radio talk shows; immunization HIV, FP Training of staff, scaled up from 1 (not functioning) to 18 sites (3@hosp 5 at HC4 and 10 at HCIII) 17 by end of 2005. 6 sites have FSG training of our HW. Partnerships have been strengthened with other stakeholders eg JCRC testing for CD4 and PCR, training lab staff, participate in our review meetings. outreach activities, PMTCT building is built by EGPAF – they have done other renovations TASO has referral networks in communities, train volunteers and we encourage clients to utilize their services technical support by EGPAF program officers and supports supervision by the district officers PMTCT follow-up clinic supported by EGPAF AIC; some sites are supported by AIC for testing Infection prevention materials, test kits, NVP tabs and suspension to cover gaps when MOH runs out of stock. This occurs frequently and can last a month EGPAF funded me in my bachelor’s degree in psychology. Trainings EGPAF also provided us a vehicle. What has enabled these achievements? Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU community mobilization and awareness Availability of funds What enabled us is the financial support. $26,000. Support direct to district and we used it according to our proposal EGPAF has been more on the ground but liaises well with MOH. Not a parallel program. Supplementations with drugs like hematinics, IPT Support for human resource/ salary support supplemented. NVP, test kits once in a while so that services are continuous. We must meet the demand we have created. Availability of other services like HIV counseling and testing Commitment of staff at EGPAF office and district officials staff dev’t (all HW trained) health systems dev’t (protocols and guidelines SOP, job aides, and IEC materials) changed flow of services labs - Renovation Acceptance of ANC is high EGPAF continued technical and programmatic support acceptance rate is high but we think because of radio programmes – Parish Dev’t committee members trained (300 ) to go in community to get px woman in routine monitoring – data mgt, feedback/reporting meetings vehicles Page xxxv Please tell us how ANC/PMTCT services have changed over time. Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU It was limited to the regional hospital till 2005 Staffing at EGPAF increased over time and this enabled them offer more regular technical support to districts We are now well integrated HIV C&T is routine at all sites. Design: We couldn’t use MW due to workload so EGPAF hired counsellors (cadre not existing in MOH system) and began moving fast. W tng we have been able to integrate service with ANC and obs/gyn. We expected support from MOH to expand but in vain, there were ANC services but with no Counseling and Testing services plus other components which came in with EGPAF EGPAF now supports more sites from the initial regional hosp We thought mothers would fear to come and numbers would go down but we have maintained our numbers Expansion of service – At the beginning we were doing VCT but we are now doing RTC, now trying to bring male involvemnt with health ed and couple counseling. FP services we are encouraging women to go. now ARVs are added. Also community. As we give drugs we go and visit – a little component of home visiting. Also FSG – we found we weren’t coping with psych needs of family. FSG are new Expanded services from the ANC clinic now to labor, PNC, care and support, CD4 and initiation of HAART we have introduced outreach at some HC2. In the beginning we had trouble securing tablets and syrup but EGPAF provides buffer stock. Care for entire family as opposed to only the mother/baby whom they were focusing at initially Quality of ANC has improved. Used to be hx/PE =go. Now do C&T w/ same day results M&E system – Has been difficult, refreshers trainings and now people are doing a good job. First we use log books from MOH and everyone is aware of how it is done. trying to streamline data entry. Data mgt has become more of a work load How has been the working relationship between EGPAF and your district Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU It has been generally a very good one. They have been prompt at realizing funds, all the delays are usually with the districts We have a really good working relationship with EGPAF. We need to strengthen support – once in a month to guide us and to assess quality of work and have meetings with us on a regular basis. Now we have emergency meetings but not regular. At the beginning, it was slow. We took time to understand the procedures especially financial and program implementation. less bureaucracy Been helpful in line with guidance especially after they recruited program officers attached to regions. They offer frequent support to the district we learnt the procedures and are now in very good relationship. It is much simpler as compared to other partners Regular meetings with EGPAF. The site directors meetings are interactive with mainly the district officials sharing their experiences and giving presentations to their fellow implementers. 2x year Page xxxvi The meetings cover both programs and finance components, the DHO attends both components With in districts are quarterly meetings, these also encourage sharing experiences How has the grant’s process worked Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU EGPAF allowed us to use our existing systems eg we have systems of requisitioning for funds thus no extra burden has been added, the reporting is also simpler. My experience with EGPAF grant process is good. We write up work plans regularly Not easy but we have not had many problems because we had grants mgt training in working with USAID from open to closure. When we started receiving the funds we knew how to handle them there is always extra burden with projects but this is simpler with less bureaucracy. They are always in touch will guide you thru. Work plans are flexible. new priority areas come up - the work plan and districts are required to incorporate them challenge in the process is delay in the release of funds from EGPAF Budget revisions are done yearly which may be a long time for it to be done. If possible we can set up a time frame eg revision every six months. It should not be left to the districts to decide when this is to happen but guided and well planned by the national office. at district level we get additional delays in disbursement from district account. Now it has stabilized. What has been the major contribution of EGPAF to the district PMTCT programme Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU MOH budget has not been sufficient to handle other services, 50% of other programs are currently not being funded. they have supported the districts with equipments like computers, motorcycles, generators, repair of old cars, facilitation of car hire for program activities in areas where there were no vehicles for repair the major contribution is the financial support which played a big role in capacity building and training. PMTCT is now sustainable… “Paying for counsellors because without counsellors this programme cannot run” “Also paying for trainings”. Here site coordination of trainings is focused. Here is done well. MOH support is conditional and fixed, 50% of money is allocated to drugs, 30% to outreaches. PMTCT was not being funded eg training 2 weeks is expensive and needed extra resources. No remodeling was done in Mbale. This was to be done by Global fund according to the work plan but did not happen. There are stock outs and we rely on EGPAF to supplement even with protective wear, anti-malarial drugs, septrin all usually run out. Global funds were given and controlled by the MOH, it was centrally controlled. Logistical support; generators, motorcycles, supplies Training of providers Page xxxvii What factors facilitated EGPAF in their performance Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU Support from the district Working hand in hand with MOH and also MU/JHU relationship has facilitated the success Coordination meetings at national level to share experiences from older districts like Jinja TA from EGPAF has really facilitated. they sent us experienced counsellors. At district level with all implementers Also the money has facilitated. What factors hindered EGPAF in their performance Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU Staff turn over, transfers even with in the same hosp to departments not implementing the program Challenges have may be encountered with data and records management. It has been challenging being able to link client data with that of other family members and tracking of data from one clinic/department to another Logistics is main hindering factor mainly test kits, NVP is usually just a delayed requisition. Supply of Septrin Frustrated by things that aren’t in the MOH – NVP, kits, etc Things out of stock. Stock outs New programmes with research and money may take time for staff to accept as part of their role and work. Follow up of the clients; addresses are very poor not easy to follow Site performance depends on site specific management some mplementers/lab staff are not committed or interested Also the issue of sustainability like the supported staff – who will pay. Difficult for MOH to take up these positions. Stigma at family level, if a spouse tests and the other is not informed. Problems are more with positive results. Some become angry Male involvement is weak, though HW even visit them at their homes How did the project supported training and supervision at the district contribute to the achievement of your goals and results? Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU Some training were done centrally by the EGPAF team and participants came from regions/ whole program Goal of the district is offering quality services to people of Jinja and so it has helped in that area Some training were conducted in the districts with trainers from MOH/EGPAF All the trainings used MOH curriculum Supervision has helped us to achieve some of our goals. MOH come and check data. We had only log books but now we change accordingly in the middle of programme. They check after trainings like infant feeding. EGPAF does supervisions through MOH. EGPAF has offered technical support and have been involved in the review of the training Page xxxviii curriculum They started FSGs and children’s groups and materials for these trainings were developed with EGPAF spear heading the whole process Is there other ways EGPAF assistance has helped your district Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU Computers a laptop and a desktop. FSG, Ariel clubs just starting – helping these members with other benefits… They’ve just given us bed nets… STAFF –lab techs 5 and 4 to 6 midwives supported by EGPAF. Many have been taken up by the district. Only 3 covered now by EGPAF! IEC materials have come via MOH from EGPAF for us to distribute to parents. Also Job Aides. Most of the time we get kits from MOH but if not there once in a while Egpaf can help. Filing cabinets, television VCR 5 for HCs. Furniture for counselling rooms at JH. Commodities – test kits, cotton, gloves, soap etc. How did EGPAF support for integration of PMTCT with HIV care and support services contribute to your district goals Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU it supports the transportation of samples to JCRC for CD4 PCR, Supported training of MCH staff – a complete team in each facility MD, MW, in charge. EGPAF has played a big role. always they have been coming and have helped us start up. Tng on ARV – now with EGPAF we have support, care, and ongoing treatment for these families. Transport of mother to ART sites. When? At time of diagnosis and also for regular medications Collab with JCRC – samples sent weekly We did not have a director but they have helped us so we have the director on board. Support FSG and that is where the referrals can be made to either HIV clinics, other CBO and any other services Reorganization of service – now we have lab service in the ANC. Also PIDC and we link our kids to that programme. How long do we keep women in prog is at question as clinic is overwhelmed. MUJAP(?) has come on board so we refer them. Issue of when woman graduate and can be linked to community￾based service. Page xxxix 15. How has family support groups and children clubs contributed to the PMTCT programme in your district Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU It is a focus for Health Education and behavior change FSG have led the way from focusing on only mother/baby to focusing on other family members 6 FSG and one Ariel club FSG bring people together for support and advises them on breast feeding and other topics prevention, positive behavior change, FP, good nutrition, infant feeding all handled in these groups FSG answered the question of how MTCT plus (comprehensive care) programs could be implemented contributed to continuum of care whereas before we would lose them. Big problem in follow up of mothers and babies. Couple counselling and male involvment. Still too early to measure but now we are seeing men come in but we are doing phone calling. Letters not working so well any more. Men‘s access clinic not increasing the way we want. looking for other strategies. Before FSG, there were other partners like AIC which started Post Test Clubs for both negative and positive clients tested. Over 500 have registered. Men are still few but the few men are very supportive and active. Peer father/peer mother training to help HW to do registration, to help with client flow etc, on voluntary basis. These groups have helped to reduce with stigma. World AIDS Day FSG participated. Also getting a small soda and a cake. The difference between the two were that; FSG were more H/U based while PTC were attached to AIC One prob is mothers ask for financial support for infant feeding. It helps us follow up babies etc, and to stay on Septrin prophy and initiate ARV. ( FSG are seen as groups of positive mothers plus her family members who may be HIV negative or positive Testing and CD4 counts. They bring in a sense of belonging to the members, Offer an opportunity to test children, Encourage male involvement FP? Are you aware of any unintended positive or negative results that came out of the project Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU HW feel they are doing more for the mothers and are happy about it. The clients are happy because of the additional services. ANC attendees have increased w/PMTCT. When test kits run out the number of clients goes down and when they get the kits we experience backlog clearance effect by testing of more clients than the new ANC clients received that month. PMTCT built the services VCT developed. PMTCT was prophy only so linking to Work load has increased because now we are testing women on the units and while we have new counsellors it is much. ART was brought on board... Improvement of working relationship is expected but a Now with RTC everyone must be C&T w same day results. staff are functioning better in all areas. Page xl spirit of teamwork in service provision has developed and performance in this area has motivated people and resulted in improved quality. Staff go look for better pay. personally for me it has given me good project management skills. ART was brought on board... Improvement of working relationship is expected but a unintended negative results that came out of the project Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU workload was an issue when we were offering individual counseling, now we provide group pre-test counseling. Making counseling a routine service has also reduced the delays at the facility. With RCT more emphasis is put on post test counseling. Thus delays have been minimized over 95% of results are negative other services neglected a bit Recently we had an HIV+ woman and HIV- man and the man left her. More time per client with PMTCT services at implementation level and at coordination level to the disadvantage of other services. Immunization, eg. ANC visits are much longer now for the woman. What best practices have learned from the project Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU PMTCT coordination meetings at national, district and site levels Communication is really important to match Health Workers sharing experiences at both implementation level and national level It has helped us to learn At first we thought there was no way to test all these people. We are now doing RTC. It has helped a lot. We are moving in the line we wanted. Things can be done! As long as we initiate and work hard. At sites it has brought on board all other HW not only mid wives in MCH Different departments, Lab staff, Managers, MW should all be brought on board at the same time. If not, one party will think the other is receiving money Direct funding to the district and implementation at district level so now we have capacity. We own the program and take responsibility for it. Taking samples during FSG meetings at the site to reduce missed opportunities and get more samples Actively involving the beneficiaries helps us to mobilize more mothers and run FSGs Units that work better have better leadership at the in-charge and facility level. Also the working relationship among the staff – interpersonal relationships – makes a site work better. Staff must work as a team instead of having the program belong to one person. Page xli Staff should take turns filling reports so everyone knows they are responsible for the program reports. Staffing levels greatly effect performance What recommendation would you make for future EGPAF assistance to the district PMTCT programme Mbale DHO Mbale PMTCT Cood Jinja PMTCT Kampala MU-JHU Infant feeding needs to be researched further for better solution. Babies get infected thru breast feeding and there is no appropriate replacement feed Potential recipients should be encouraged to apply eg RFA to Mbale in 2002 but only initiated the application process after EGPAF officials came in the district and encouraged us to apply Continue providing financial and TA especially as we are now taking on these comprehensive care elements – we need a lot of support. We are happy with the current approach of We really need support but we need to look at sustainability in the case support ends. We need to build in some systems. For now we need EGPAF support with all these sites on board PMTCT is ongoing but we must continue. HIV pediatric care also needs more development; appropriate regimens, child welfare, some children are orphans and grand parents can’t support them with elements like ITN etc The processes are too long eg from 2003 when applications were done to 2005 when the funds were received. Also staff turnover means continuous need for training. and Pediatric HIV Care is coming on and we need to train staff. Topping up of salaries to help retain staff or something small. We need to focus on OVC Taking recipients through what their requirements are, USAID has done this well Continuous PSS by volunteers will need to be facilitated for home visiting. We should provide transport bicycle etc for community activities. Expansion to all the HC III to ensure that clients do not travel long distances, We have additional 20 HC III Clarify EGPAF RFA process: RFA on EGPAF web site had no time line, Can our new baby districts respond to those RFA? Continued support for commodities. MOH has not caught up with demand yet. EGPAF should continue helping HR support for key staff salaries esp where the workload is big. Otherwise workload is too much. achieving targets and goals have come as a result of EGPAF target 75% reached we are over 85% women offered NVP Page xlii Appendix N EGPAF –Time line of milestones Table 5. EGPAF - Timeline of Program Milestones 2002 September USAID awards Global Cooperative Agreement GPH-A-00-02-00011-00 for an estimated $100 million for implementation and expansion of programs in up to 20 countries. 2003 June First round of Requested for Application on Call to Action Project announced December 7 sub-awards issued to 7 districts of Uganda for $1.6 million 2004 March 5 DDHS trained in Senegal on USAID Rules and Regulations May Discussions held with UPHOLD and AIM on allocation of districts for PMTCT August International Video Conference for integrating PSS into PMTCT October Site Directors meeting held with implementing district leaders October International Site Directors Workshop held November Training held on Financial and Grants management for the sub grantees and new applicants 2005 January PSS component designed and planned to be integrated with PMTCT June 4 sub-awards issued to 4 more districts of Uganda August Site Directors Workshop held in Mukono September $1.205 million of field support fund committed by USAID/Kampala for integration of ART and 40 sites targeted for ART services November Evaluation of EGPAF supported PSS groups completed December Site renovation completed in Mukono and Jinja 2006 January PMTCT program launched in Masaka and Sembabule districts with PSS and ART linkage components March PMTCT program launched in Mbarara, Kasese and Bushenyi districts with PSS and ART linkage components May Site Directors Workshop held in Mbale. 16 Motorcycles provided to 6 districts for home visits and transportation of blood samples July Flip Charts and Brochures developed for FSG – IEC September $3.9 million field support committed by USAID/Kampala October Launch of Family Support Group Guidelines by MOH/EGPAF December No-cost extension of CA awarded through 3/31/07. First Children’s Camp held in Jinja. 2007 January Global CA GPH-A-00-02-00011-00 extended to March 2008. 15 motorcycles provided to different districts for home visits and transportation of blood samples February Site Directors Workshop held in Mbarara April Extension of 16 sub grants up to September 2007 initiated May-June Current assessment of EGPAF PMTCT programming August No- cost extension from March 31, 2008 to September 30, 2010