ENGAGING PEOPLE LIVING WITH HIV IN CITIZEN MONITORING IN MALI

SEPTEMBER 2010 This publication was produced for review by the U.S. Agency for International Development (USAID). It was prepared by Ken Morrison of the Health Policy Initiative, Task Order 1.

Suggested citation: Morrison, Ken. 2010. Citizen Monitoring Final Report: Mali. Washington, DC: Futures Group, Health Policy Initiative, Task Order 1. The USAID | Health Policy Initiative, Task Order 1, is funded by the U.S. Agency for International Development under Contract No. GPO-I-01-05-00040-00, beginning September 30, 2005. HIV-related activities of the initiative are supported by the President’s Emergency Plan for AIDS Relief. Task Order 1 is implemented by Futures Group, in collaboration with the Center for Development and Population Activities (CEDPA), White Ribbon Alliance for Safe Motherhood (WRA), and Futures Institute.

CITIZEN MONITORING FINAL REPORT: MALI SEPTEMBER 2010

The views expressed in this publication do not necessarily reflect the views of the U.S. Agency for International Development or the U.S. Government.

TABLE OF CONTENTS

Acknowledgments ......................................................................................................................................  iv

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Executive Summary .................................................................................................................................... v 

Abbreviations .............................................................................................................................................  

Background and Country Context ............................................................................................................ 1 

Evolution of Citizen Monitoring: Focus on Mali ..................................................................................... 2 

Development of a Concept for the Situation in Mali................................................................................  Development of the Pilot Project in Mali ................................................................................................. 3 Data Collection......................................................................................................................................... 5 Data Analysis............................................................................................................................................  

Results .......................................................................................................................................................... 6 

Results of the Survey................................................................................................................................ 6 Using Data for Analysis and Advocacy ...................................................................................................  Successes and Challenges in Implementing Citizen Monitoring ...........................................................  Overall Results of the Project.................................................................................................................  

Discussion ..................................................................................................................................................  

Appendix A: Questionnaire (English Version).......................................................................................  

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ACKNOWLEDGMENTS

The author extends sincere and heartfelt thanks to all who helped develop the Citizen Monitoring methodology in Mali. This activity benefited greatly from the involvement of people living with HIV (PLHIV), who generously gave their time to provide thoughtful comments and feedback on the quality of HIV services in Mali. Special thanks go to representatives of the Mali National Network of PLHIV (RMAP+), who helped members to understand and use the data to make positive changes in Mali; and to staff of the USAID | Health Policy Initiative, Mali, who provided assistance during all stages of the activity and helped lead a key stakeholder meeting. Additionally, the author recognizes the leadership and technical expertise of the following:

Modibo Kane, General Coordinator, RMAP+ Djerma Oumou Diarra, President, RMAP+ Drame Kone, Data analysis agent, RMAP+ Zamitou Maiga, Data collection agent, RMAP+ Famory Fofana, Country Director, Health Policy Initiative, Mali Modibo Maiga, former Country Director, Health Policy Initiative, Mali Malick Sene, Executive Secretary, High Council of the National AIDS Program

The author also expresses sincere gratitude to the staff at USAID/Mali, the Joint United Nations Program on HIV/AIDS/Mali, and the United Nations Development Program regional office for support and encouragement during this pilot project. Also, the following staff and consultants of the USAID | Health Policy Initiative, Task Order 1, provided useful feedback on the design and implementation of this activity: Maria Borda, Anne Eckman, Karen Foreit, Elizabeth Mallas, Ken Morrison, Susan Pitcher, Caroline Teter, and Katherine Wells. Last, this project would not have been possible without the participation of HIV-positive people. One person who participated in the project, Gaoussou Drame, passed away during the data collection period. This report is dedicated to him. .

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EXECUTIVE SUMMARY

The Health Policy Initiative, Task Order 1, undertook a pilot project on citizen monitoring with RMAP+, the national network of people living with HIV (PLHIV) in Mali. The project sought to increase understanding of health service delivery and utilization from the service user’s perspective and, in the process, develop a stronger networking system that would enable RMAP+ to better survey its membership, translate this information into action plans and an evidence-based advocacy platform, and facilitate more effective participation of PLHIV in policy dialogue. The process of the pilot project included (1) identifying key partners, (2) working with RMAP+ representatives to design the parameters, content, and instruments for use in a participatory manner, (3) exchanging information with key national partners at the beginning, during, and end of the process, and (4) providing regular technical assistance throughout key points in the process. However, PLHIV led the process and made the final decisions in all aspects of the project. The results of the pilot project include (1) the strengthening of a national network of PLHIV to oversee a project, survey its membership, and undertake analysis of findings, and apply them to the design of its programming and advocacy; (2) a greater appreciation of the quality of healthcare services from the user’s perspective; (3) development of an action plan for RMAP+ and for participating PLHIV associations for short-term advocacy to build membership knowledge base and capacity; (4) development of the base process and tools to take the pilot to a national level; and (5) a commitment by national stakeholders to consider the results in the development of future programs. Key lessons learned to inform a replication of the pilot include the following:

A PLHIV-led process can produce high-quality results that can be used in developing an advocacy agenda.

A participatory process that transitions leadership into the hands of a PLHIV network can appreciably increase ownership.

Although the information gathered in such a process is extremely valuable, a more complete picture can be made by triangulating the information with the views and opinions of health service providers and a more qualitative exploration of key themes with PLHIV.

The instrument for taking the pilot project to a national level must be refined so that it is in harmony with national and international indicators.

Although funds have been identified to take this pilot to a national level, further support is necessary to ensure a solid distribution and data collection system.

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ABBREVIATIONS

AIDS acquired immune deficiency syndrome ARCAD Association of Research, Communication and Home Care for PLHIV ARV antiretroviral ART antiretroviral treatment CSLS-MH National Council for AIDS Response – Ministry of Health (Mali) GIPA Greater Involvement of People Living With HIV HCNLS High National Council for AIDS Response (Mali) HIV human immunodeficiency virus IR intermediate result M&E monitoring and evaluation NGO nongovernmental organization PEPFAR President’s Emergency Plan for AIDS Relief PLHIV people living with HIV RMAP+ Mali National Network of PLHIV UNAIDS Joint United Nations Program on HIV/AIDS UNGASS United Nations General Assembly Special Session (on HIV/AIDS) UNICEF United Nations Children’s Fund UNDP United Nations Development Program USAID United States Agency for International Development WHO World Health Organization

BACKGROUND AND COUNTRY CONTEXT

With a population of more than 12 million persons, Mali is a country of many challenges. At the end of 2007, the United Nations (U.N.) Population Division estimated the national life expectancy to be 46 years. The overall adult literacy rate is 23 percent (15.6% for adult women) (UNESCO, 2006).1 The adult HIV prevalence rate is 1.3 percent (ages 15–49), with an estimated 100,000 people living with HIV (PLHIV)—of which 56,000 are women 15 years of age or older. However, only 3 percent of the population has undergone HIV testing in the past 12 months. Of the people estimated to be in need of antiretroviral treatment (ART), the coverage rate as reported by the government is just over 40 percent.2 The government of Mali reported that, although 93 percent of people living with advanced-stage HIV have initiated treatment, only 67 percent were being monitored at the end of 2009.3 In its report to the United Nations General Assembly Special Session (on HIV/AIDS) (UNGASS) Declaration of Commitment on HIV/AIDS in 2010, Mali reported on the following:

Its programs designed to change societal attitudes of HIV-related stigma and discrimination to understanding and acceptance

Its advances in policies, laws, and regulations to promote and protect HIV-related human rights Civil society’s representation in the planning and budgeting process for the National Strategic

Plan on HIV and AIDS or in the current action plan (attendance at planning and project review meetings)

Civil society’s significant contribution to the strengthening of the political commitment of top leaders and national policy formulation.

The HIV seroprevalence rate among the general population of Mali decreased from 1.7 percent in 2001 to 1.3 percent in 2006 (Mali Demographic and Health Survey 2006), reflecting the efforts achieved in the fight against HIV in Mali. These important efforts enabled a significant improvement in activities related to prevention, support services (care and ART), and various support activities for people living with or affected by HIV/AIDS. Various organizations contributed to these Malian achievements. Although Mali is developing a new strategic plan, in 2006, the country adopted a national strategic plan (Cadre Stratégique National de Lutte Contre le VIH/SIDA 2006–2010) with three strategic axes:

Promotion of a supportive environment for the development, sustainability, and good governance of the response to HIV

Reduction of the risks and vulnerabilities related to the epidemic Reduction in the social, economic, and cultural effects of HIV on a developing society

These strategic axes emphasized the importance of involving PLHIV organizations in advocacy activities and the importance of informing, educating, and communicating to key stakeholders (especially rights advocates and policymakers) about the existence, characteristics, ways and means of access, and means of redress in the case of dissatisfaction of services or mechanisms in the public, private, and civil realms. They also highlighted the need to involve PLHIV in the design, implementation, and evaluation of prevention strategies at the national, local, and community levels, including the creation of conditions appropriate for response to specific needs and purposes:

1 Epidemiological Fact Sheet on HIV and AIDS. Mali, 2008. 2 Ibid. 3 National UNGASS Report. HCNLS, Mali, March 2010. http://data.unaids.org/pub/Report/2010/mali_2010_country_progress_report_fr.pdf.

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Making good use of the expertise and experience to develop, communicate, and implement nondiscriminatory policies and responding to the needs of PLHIV

Presentation of positive role models for PLHIV Development and sustainability of a social partnership in response to HIV marked by openness,

candor, and compassion

An emerging national network of PLHIV, the Mali National Network of PLHIV (RMAP+), is the principal representative of PLHIV in national policy dialogue and the process to develop a new national strategy. The network also represents civil society on the Country Coordinating Mechanism of the Global Fund. Originally formed in 2005, it has 43 member associations and three primary objectives to (1) strengthen the capacity of the PLHIV associations, (2) undertake advocacy for full access to care and treatment, and (3) promote the rights and responsibilities of PLHIV in Mali. However, in conducting a situational analysis related to the national strategic plan, it is evident that the challenges of building capacity in civil society are great. In 2006, Mali passed a specific law on HIV/AIDS (Loi No. 06-028 du 29 juin 2006: Fixant les règles relatives a la prévention, al la prise en charge et au contrôle du VIH/SIDA). This law outlines the responsibilities of the state for access to information, health services, and treatment. It notes that testing should be done with informed consent, that services should be accessible, that confidentiality should be guaranteed, that participation of PLHIV in society is a right, and that there should not be discrimination in the provision of health services or in employment.

EVOLUTION OF CITIZEN MONITORING: FOCUS ON MALI

Development of a Concept for the Situation in Mali

Over the past 10 years, under the work of the POLICY Project and the Health Policy Initiative, Task Order 1, networks of PLHIV have contributed greatly to the development of citizen monitoring methods and tools. From citizen surveillance committees in Peru and legal clinics in Vietnam to human rights monitoring in Cambodia, the evidence is growing to support the benefits of actively engaging affected communities and other key stakeholders in monitoring quality of HIV services and progress in reducing stigma and discrimination. In the course of 2008–2009, the Health Policy Initiative further developed the citizen monitoring concept and, in collaboration with the Vietnam Network of Positive People (VNP+) and other local nongovernmental organizations (Vietnam Civil Society Platform on HIV/AIDS—VCSPA, the Center for Counseling on Policy and Law on Health and HIV/AIDS—CCPLH), designed and implemented a citizen monitoring project in Vietnam. In West Africa, Health Policy Initiative representatives met with members of the West African network of PLHIV at the 15th International Conference on AIDS and Sexually Transmitted Infections in Africa in Dakar and discussed the work in Vietnam and the possibilities of undertaking such a project in West Africa. The representative from Mali expressed a keen interest in the project and an exploratory visit was scheduled. In June 2009, the Health Policy Initiative staff met with key stakeholders from the government health ministry, civil society, national AIDS program, USAID Mission, UNAIDS, UNDP, and the national network of PLHIV. All agreed that the concept of citizen monitoring represented a timely opportunity for Mali, given the country’s current discussions on a new strategic national plan and preparations for a large national global fund support project. The Health Policy Initiative staff invited 20 PLHIV from in and around Bamako to discuss the concept. At this meeting, the group conducted a short situation analysis to identify key challenges for PLHIV in

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Mali and to gain a full understanding of the needs of their respective PLHIV associations. The group agreed that:

This was an interesting project for Mali, and RMAP+ should be the principal partner The project should focus on two elements:

o Quality of health services (including access to ART; access to treatment for opportunistic infections; access to laboratory and social services; and prevalence of stigma and discrimination in health services)

o Involvement of PLHIV in policy dialogue and program planning and implementation

The following basic principles were agreed on:

The project should be lead by PLHIV PLHIV association members should be trained in data collection and data analysis The project should guarantee and respect anonymity and confidentiality Participation should be based on informed consent The results should be used to outline policy dialogue The process should help to develop organizational capacity of PLHIV associations The pilot project should take place in the district of Bamako and the region of Koulikoro but

serve as a basis for developing a national project (and perhaps a regional project)

The group then agreed on a basic methodology for the process and identified principal partners for the project.

Development of the Pilot Project in Mali Defining the parameters In June 2009, the Health Policy Initiative organized a workshop to outline the parameters of the project in Fana, Mali. Forty PLHIV took part in the three-day workshop. The objectives were to (1) increase the understanding of “citizen monitoring” for the participants, (2) define the key aspects of the project, which included outlining the key indicators to be measured, and (3) prepare a methodologic plan for the process overall and data collection and analysis, including timelines and responsibilities. On the first day, the Health Policy Initiative staff outlined the basic concepts for citizen monitoring, the history of citizen monitoring and HIV, and the lessons learned from the experience in Vietnam. Participants then outlined the framework for the HIV response in Mali, including review of the basic elements of the National AIDS Strategic Plan and the 2006 AIDS law. Working in six smaller groups, the participants explored the situation of HIV in Mali. The subgroups focused on (1) access to treatment, (2) access to social and other services, (3) stigma and discrimination, (4) involvement of PLHIV, (5) PLHIV associations, and (6) communication and partnerships. Each group explored its area, looking at key challenges and defining potential elements for monitoring. At the end of Day 1, the larger group defined the key potential domains (elements) for monitoring by PLHIV in Mali:

Access and storage of drugs Quality of care (denial, selflessness, receptiveness, and discrimination) Confidentiality and consent Access to other services, such as those related to

o Health insurance o Socioeconomic o Legal o Psychosocial

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o Infant formula

Level of information/knowledge of PLHIV Access to trained health professionals and psychosocial consultants Male involvement in reproductive health Instances (and context) of consultation between associations and authorities

On Day 2, the Health Policy Initiative briefly reviewed the basics of monitoring and evaluation, which included the definition and development of indicators. The participants were then divided into six groups, focusing on the same six areas as the day before. Each group defined the aspects in its area (grouping of the identified domains) and outlined some key questions or indicators to measure those aspects. These were then compiled into a long list for further consideration. On Day 3, the group agreed on a process and the needs for (1) an instrument for pilot testing, (2) training and technical assistance, (3) data collection, and (4) data analysis. Participants agreed on quotas for partner associations and criteria for selecting representatives of their associations to participate in data collection. Trained data collection agents would not be reimbursed for their time, but basic costs (transportation or communication) would be covered. A timeline and roles and responsibilities were also determined. The group then compiled the results of its work to present at a follow-up stakeholders meeting. The overall evaluation of the meeting was positive. Participants were pleased with the outcomes and the transition to greater ownership of the process. Building stakeholder support The following week, the results of the workshop were presented to diverse stakeholders in Mali. The president of RMAP+ and the executive secretary of the national coordination body for HIV, Haute Conseil National de Lutte contre le Sida (HCNLS), presided over the meeting. Thirty-three people attended and represented diverse elements of the national AIDS program and the national health sector; UNAIDS and UNDP; international and national nongovernmental organizations (NGOs) working in Mali; and religious leaders, community workers, and PLHIV. Representatives of RMAP+ worked with the Health Policy Initiative to prepare and rehearse the presentations. The stakeholders all agreed on the importance and relevance of the project and agreed to participate. They noted a great need for better communication between health service implementing partners and PLHIV associations and expressed their desire that the project progress into becoming a national system. Several stakeholders stated that the timing was excellent, given the country’s current work to develop a new national strategic plan. The stakeholders further noted that this project was a key element in good governance practices because of the appreciation of services from the point of view of service users. Refining citizen monitoring tools and methods for Mali In the months that followed, the Health Policy Initiative and RMAP+ worked on transforming the indicators into a questionnaire. This process included examining instruments used in other related projects, including Vietnam, and reviewing relevant studies on quality of services, quality of life, and stigma and discrimination. The questions were then translated into a low-literacy format using a system developed by the World Health Organization (WHO). In March 2010, the Health Policy Initiative brought together a small subset of PLHIV who had participated in the workshop to rework the questionnaire into a shorter version. Subsequently, as part of a train-the-trainer workshop, 16 PLHIV modified this version, agreeing on 100 questions. Because of the length of the questionnaire, it was divided into two forms which could be used either together or separately. This group collectively developed a basic training for members of the 10 participating associations as data collection agents. The group reviewed and agreed on concepts and procedures for

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maintaining confidentiality and anonymity; obtaining informed consent; avoiding harm; safeguarding information and identification codes; and accounting for other ethical and research considerations. In the weeks that followed, RMAP+, with the Health Policy Initiative’s technical assistance, developed a guide for data collectors, completed and formatted the questionnaires, obtained the assistance of a group of lawyers (Ligue de jurists) to serve as ombudspersons in the process, and developed and undertook the training of 34 data collectors from 10 participating associations of PLHIV. RMAP+ undertook the organization and coordination of the 2-day training at the end of March 2010. The consensus was that the training was good, but more practical sessions could have been provided so that each interviewer had practice rounds in French and the local language, Bambara. Additional notes to the interviewees and agreed-on translations for key concepts were suggested. The English version of the final questionnaire is included as Appendix A. A French version is also available by request or online at www.healthpolicyinitiative.com.

Data Collection

RMAP+ managed the data collection process. From April to June, the trained data collectors interviewed their associations’ members or people attending functions organized by their association. The interviews followed a general pattern. First, the associations made an announcement and explained the project during forums for PLHIV. Then, they asked PLHIV who attended the functions to participate in the survey. They also asked them to refer other PLHIV. Most associations also surveyed people in places where the association held activities (sometimes in health centers or in a person’s home [during home care] or during hospital visits). In exceptional cases, meetings with PLHIV in association offices or at the home of the person were undertaken. The majority of interviews were carried out using both questionnaires, one after the other. This took between 30 and 45 minutes. The time depended on aspects such as the literacy of the person. The interviewee would read the question in French and then translate to Bambara. For some participants who had trouble understanding, items were explained. Comprehension was, for the most part, higher for association members. Generally, participants were appreciative of being asked their opinions and felt encouraged when they understood the reason for the questions. Conversely, some people asked for money to respond. When people asked about health services, the interviewers explained the available resources or offered a resource list. Over three months, more than 900 questionnaires were administered (476 of the first questionnaire and 478 of the second). All data were entered into an Internet-based database that was then cleaned by the Health Policy Initiative. For the purposes of the analysis and for this report, 433 PLHIV taking ARV medication who fully completed both questionnaires were included.

Data Analysis

In June 2010, 24 PLHIV from RMAP+ and the 10 partner associations came together at a three-day workshop to analyze the results. The objectives were to (1) increase understanding of the results of the data collection and their implications for the citizen monitoring pilot project, (2) evaluate the process and determine lessons learned, and (3) prepare a plan for follow-up. On Day 1, the coordination team, with the assistance of the Health Policy Initiative, presented the overall results of the survey. In the afternoon, the group discussed the key themes. On Day 2, the group looked at how these outcomes might be used for advocacy and drafted a communication plan. In the afternoon, the group did a step-by-step analysis and appreciation of the process. On Day 3, the group identified next steps and organized the stakeholders meeting for the following week. The meeting ended with evaluations of the workshop and overall pilot project.

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At the end of June, RMAP+ invited key stakeholders to discuss the process and results of the pilot project on citizen monitoring. Eighteen participants, including representatives from UNAIDS, the Health Policy Initiative, the Ministry of Health, Family Care International, a national human rights organization, three large NGOs, RMAP+ and representatives from four participating PLHIV associations took part in the meeting. Strong appreciation of the initiative and congratulations were expressed. It was noted how important it is to put PLHIV at the center of the response in Mali. It was also noted how important this information is in terms of defining policy dialogue. The group noted that understanding of the manifestations of stigma and the effects this understanding had on service access, delivery, and adherence was vital. It was noted that the general population of Mali was often not informed of their rights. The group believed that this information could be triangulated with qualitative information from PLHIV and a survey of health providers. It was also noted that RMAP+ was able to take the process to a national level.

RESULTS

This section presents the results stemming from (1) the survey of PLHIV, (2) the analysis of the survey data, (3) the process itself, and (4) the pilot project overall.

Results of the Survey

Two questionnaires were completed by PLHIV who were either members of the 10 partner associations or involved in activities of the associations, usually outreach or home care–related activities. The survey results are divided into three categories: (1) the participant profile, (2) the feedback on key indicators as related to health and other services, and (3) results of the project overall. Of the 954 questionnaires captured (476 of questionnaire format 1; 478 of questionnaire format 2), 433 overall questionnaires (formats 1 and 2) were included in this analysis. The criteria for inclusion were: PLHIV, currently prescribed ART, who completed both questionnaires. Because the survey was administered primarily to PLHIV who were members of participating associations, the results cannot be extrapolated to a national level. They do, however, give the first important appreciation of quality of health services in Mali from the point of view of PLHIV. Participant profile The majority of the participants were women between 25 and 44 years of age. Less than 15 percent completed secondary school or postsecondary education. Most respondents were married or widowed. One-third of the respondents were in polygamous marriages, about one-fourth were in monogamous marriages, and almost one-fourth were widowed. The participants came from a variety of backgrounds; however, most defined themselves as homemakers (menageres) and nearly a one-fifth were vendors (commercants). About one-sixth defined themselves in various ways (in this analysis classified as other): the most common definition was a combination of vendor and something else, such as homemaker. A good number were a combination of farmer and another option (often vendor). Several in the “other group” defined themselves as counselors or group “facilitators”; still others were gardeners, cleaners, retired, or without steady employment. More than half the participants were diagnosed more than three years ago, and less than 18 percent were diagnosed in the year preceding the survey. See Table 1 for more details.

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Table 1. Participant Profile, by Percent of Total Participants

Age, years (range 18–69) (mean age Gender 37.6)

Female 71.8 15–24 6.7

Male 28.2 25–29 10.4

Education (highest grade completed) 30–34 20.6

Did not finish primary school 21.9 35–39 20.6

Completed primary school 21.0 40–44 19.2

Completed secondary school 10.9 45–54 17.8

Completed post secondary school 7.2 55+ 4.6

Completed “French-Arab” studies —

Completed Koran studies 15.7 Marital Status

Other (short courses, etc.) 19.7 Monogamous married 24.5

Profession Polygamous married 33.3

Student 2.8 Single 8.1

Bureaucrat 6.2 Divorced 8.3

Worker 6.7 Widow/widower 23.3

Farmer 7.2 Other 2.5

Professional 10.6

*Other 16.4 Time Since HIV Diagnosis

Vendor 20.6 More than 5 years previous 32.3

Between 3 and 5 years Homemakers 29.3 previous 22.4

Between 1 and 3 years Membership in a PLHIV Association previous 27.3

Yes, member 79.0 Between 6 months and 1 year 12.2

No, not a member 20.1 Less than 6 months ago 5.1

State of health or participants The majority of respondents (80%) evaluated their present state of physical health as good. However, more than one-third experienced an opportunistic infection in the previous three months, and half the participants were taking medications to prevent opportunistic infections at the time of the survey. Concerning monitoring the health of PLHIV, approximately 40 percent had not verified their CD4 count twice in the past year (as is the standard). More than 55 percent had not verified their viral load in the past year (as is the standard). Testing experience The participants were asked about their experience with testing. About one-third were tested in an NGO facility. Another one-fourth were tested in a hospital. The rest were tested in various health centers: a health reference center (18.7%), a community health center (8.8%), and in a voluntary counseling and testing center (8%). Almost 13 percent reported that they had not been tested with their consent. One-fourth did not receive pretest counseling.

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Access to services The majority of respondents visited a health center in the month preceding data collection (68.8% had visited in the past three weeks). Half the respondents visited an NGO on their last visit (49.2%); approximately one-quarter visited a hospital (24.7%). Approximately one-third of respondents noted that the health center was not easily accessible (33.3% not easily accessible, 2.4% difficult to access). Similarly, one-third noted that it took more than 1 hour to reach the health center (32.7%). More than 40 percent said that the cost of transport was greater than 500 CFA (this is approximately the equivalent of US$1 but represents a considerable investment for many). The majority (93.7%) reported that the cost of transportation was a burden for them (44.6% reported a considerable or great burden). The majority (87%) did not believe that they were treated more coldly than HIV-negative persons. A significant number (12.5%), however, did consider that they had been inappropriately isolated (separated physically) because of their serologic status. About one-sixth (16%) reported that they believed that health workers had avoided them. More than half reported that they had, at some point since being diagnosed as HIV positive, been refused services. Cost of services More than one-third of respondents considered their expenditures on health to be inappropriately high (36.5 %). Almost half (45.7 %) thought their expenditures for medicine were too high. Nearly one-third thought they had paid for services (30%) or for medication (31.2%) that they believed the government was to supply for free. About 41.8 percent reported that they were deprived of services because they could not pay. Other services Several questions were asked about services other than health. More than two-thirds (70%) had recourse to some sort of socioeconomic assistance or an income-generating program, two-thirds (67.4%) had recourse to social assistance services. The majority of these (79% and 80%, respectively) reported being satisfied with these services. Rights A third of respondents (33.5%) did not know about the existence of legal documents that protect the rights of PLHIV in Mali. And more than a third did not know where to turn if their rights were violated. Access to treatment and adherence One in five respondents (19%) reported that they had some difficult taking their ARV medication at the prescribed times. Three in five (60.5%) of the PLHIV who participated affirmed that at one moment or other they were without the ARV medications they needed to take. One in 10 said they were without ART quite often or often. Close to one quarter (22.9%) of the respondents noted that the medication that their doctor prescribed was not always available. Nearly 60 percent noted experiencing stockouts of medication in pharmacies. Nearly one in six (14.5%) noted that the stockouts occured quite often or often.

Using Data for Analysis and Advocacy

With the Health Policy Initiative’s assistance, a group of 24 PLHIV representing RMAP+ and the 10 participating PLHIV associations came together to learn about the results of their work and to discuss the meaning. They were happy to hear more about their members and their satisfaction and difficulties with health services. The group felt great pride in having come by that knowledge themselves. The discussion led to the confirmation of some problems and uncovered some surprises. When the high level of satisfaction of services was discussed, for example, the participants posited that perhaps people were more satisfied with NGO services. Further analysis, however, did not confirm this.

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It also lead them to consider different possible actions for informing their advocacy platform, providing ideas in which they must undertake more work with their membership, and providing ideas for more assessment. This process also led to re-evaluation of many of the questions and development of a shorter questionnaire to serve as a basis for a national project. The group noted that the pilot project affirmed the capacity and role of RMAP+ in leading a national project with their associations. PLHIV national advocacy platform Four key themes were discussed as part of a national advocacy platform: accessibility of services, adherence to treatment, rights, and the role of civil society. Each had underlying issues and concerns. The question of accessibility touched on stockouts, the availability of opportunistic infection medications and of laboratory services, and access to ARV medication. Accessibility of other services, including, social, economic, and judicial services and access to milk for newborns must be included in the quest for universal access. Access also meant dealing with the difficult burdens related to cost, distance, and time. The survey results were then discussed in the context of advocacy to improve health services and other services and to affirm and support the work of NGOs in the response (including PLHIV associations). The group also discussed the implications for their own associations and for taking the project to a national level. Working with health services and other service providers to improve services Although the participants were generally satisfied with the services, certain needs were noted. Health services must deal with questions of stigma and discrimination, including use of positive, nondiscriminatory language; acceptance; inappropriate isolation; and provision of services adapted to specific needs of the person. Key questions related to adherence focused on not only access to medication, but also the high rates of opportunistic infections and of secondary effects. PLHIV often do not know their rights and recourse. In the discussion related to questions of perceptions of what should be free, questions were posed as to whether the association members knew what the rights to services included. Rights also included addressing informed consent and testing, as well as rights related to information and services related to reproductive health. It was agreed that RMAP+ would not only advocate for improved services but also help participating associations work more closely with local health services to address these needs. Affirming and supporting the role of civil society (including PLHIV associations) One other key result was the affirmation of the vital role of civil society in the response to HIV in Mali. This included civil society’s roles in care and support, helping family and community members access high-quality services, learning about their environment and needs, and educating their members, family, and friends. The analysis also brought participants to discuss the role of bringing information to the policy dialogue at national and local levels. Local PLHIV organizations took the results to discuss with their local service providers (many of which are NGOs) and RMAP+ met with representatives of the Ministry of Health to discuss implications for services. Strengthening knowledge and capacities of PLHIV The analysis also brought some clarity to the work that the associations could undertake with their members and with which RMAP+ could assist them. This included educating membership about different services and about rights and recourse mechanisms. Associations could continue and reinforce the educative work they do regarding general health, hygiene, and opportunistic infections. Questions related to tips for better adherence and for sharing information about status with family and friends. Reproductive and sexual health for men and women was also an important theme for membership education. The group noted that associations had an important role to play in encouraging access to testing and other services, as well as in offering care and support (accompanying others to health services) and in various forms of counseling. In all of this, RMAP+ has a central role in creating and/or distributing educational material and in training.

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Commitment to taking the process to a national level The question of replicating the pilot at a national level was discussed and the group believed that, yes, RMAP+ could and should undertake this initiative. The participants made concrete suggestions for changes and revised the questionnaire.. The group believed that the level of encouragement of key partners in the process meant that it could be easily scaled up. Planned follow-up activities include the following:

The 10 member associations and RMAP+ agreed to have discussions with their membership about the results and on using the results. Two PowerPoint presentations were developed and distributed: one for use in the associations and one for use with key national stakeholders (including service providers, NGOs, and government). A guide for associations to develop very short case studies was developed and distributed. All 10 associations called special meetings of to share and discuss the results with their members.

RMAP+ is working on policy briefs or presentations on the four key issues identified: accessibility of services; adherence to treatment, rights, and the role of civil society.

Key research questions were raised in the course of the analysis that would lend themselves to more work in the form of focus groups or case studies. These included exploring themes around adherence, service refusal, communication issues between health professionals and PLHIV, economic service needs, conservation of medication, and managing secondary effects. As an initial step, the participating associations agreed to undertake at least one case study to better illustrate the results of the survey. A short guide for this process was distributed.

A questionnaire was enhanced given the lessons learned from the process; however, refinement was still necessary. The participants agreed that the questionnaire should be reviewed in relation to making sure it is harmonized with national and international indicators. The questionnaire was shortened. The PLHIV associations noted that the revised questionnaire could be applied every six months with members to see progressive trends.

To take this pilot process to scale, the questionnaire and survey design should be reviewed by an institutional review board.

As part of the Mali project funded by the Global Fund, funds have been set aside for the key aspects of taking the process to a national level (national training and assessment workshops and data collection system). About $36,000 has been allocated for this purpose.

Successes and Challenges in Implementing Citizen Monitoring

At the end of the analysis, the 24 representatives of the participating PLHIV associations evaluated the process and outcomes of the pilot project. They deemed that the objectives had been met. They noted that the process was in the hands of PLHIV. They were happy with the technical support offered but noted that some logistical issues still should be ironed out to move to a national level (distribution system for questionnaires, cost reimbursement system, recruiting more men, better photocopying, and quality assurance procedures). The group, however, was confident that it could take the process to the national level. When queried about what knowledge or skills they and other participants had gained, they noted many things, including the value of monitoring, how to do basic research, how to undertake simple analysis, and how to use results. Many noted how much they had learned about the reality of other PLHIV. The participants noted that the training for data collection could be longer with more practice rounds and discussion/agreement on Bambara (local language) explanations. Generally, the questionnaire was easier for PLHIV association members; however, for some, the auto-administered elements of the questionnaire

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were difficult. They also attested to the extent that most persons, when they learned what the pilot project was for, were very happy to participate. A few asked for money at the end, even though this point was covered in the informed consent at the beginning. The participants noted that the training should include what to do in different situations. Although much information was given during the course of the pilot project to participants, it was suggested that each association develop a list of key resources with the help of RMAP+. It was agreed that taking the project to a national scale would require a more dedicated staff and system for communication, data collection, and questionnaire distribution and careful consideration of a system for cost reimbursement.

Overall Results of the Project

Overall results of the project included the following:

A greater appreciation of the quality of health services from the point of view of PLHIV Increased capacity of a national PLHIV network to undertake a research project, including

design, data collection, and analysis A commitment by national stakeholders to consider the results in the design of a national strategic

plan Identification of key follow-up activities to take the pilot project to a national level

DISCUSSION

Key lessons learned for replicating the pilot include the following:

A PLHIV-led participatory process works and can produce high-quality results not only in terms of information but also in raising the capacity of a national network and PLHIV associations to survey their membership and develop a workplan.

A process that transitions that leadership into the hands of a PLHIV network can appreciably increase ownership. A process such as citizen monitoring can induce learning through “accompanied” application—learning by doing. Although technical assistance in such a process is vital, it is necessary to be as unobtrusive as possible.

Although the information gathered in such a process is extremely valuable, a more complete picture can be had by triangulating the information with the views and opinions of health service providers and a more qualitative exploration of key themes with PLHIV. At the end of the pilot process, the associations had already begun to submit short case studies to illustrate aspects of the findings.

The instrument refined for taking the pilot project to a national level must be polished so that it is in harmony with national and international indicators. It must be further sharpened and, in some cases, simplified to reach PLHIV who are not members of PLHIV associations.

At part of this process, it would be preferable to identify 10–15 key indicators that correspond to international and national indicators and could be checked over time or added to other survey instruments or mechanisms

Although the first step in such a process is to help the national network build its capacity and ownership of the process, there is a need over time to work more closely with local or regional research institutions. This should not occur at the expense of PLHIV ownership.

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Although funds have been identified to take this process to a national level, further support is necessary to ensure a solid distribution and data collection system.

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APPENDIX A: QUESTIONNAIRE (English Version)

Participant Identification Number

M or F Age First two letters of your first name

First two letters of the first name of your mother

Date:Data collection agent:

Location:Association:

Region:

Section 1A: Demographic Questions

1001. What is your marital status?

1. 2. 3. 4. 5.

Married (Monogamous) Married (Polygamous) Single Divorced Widowed

number

1002. What is your profession?

1. 2. 3. 4. 5. 6. 7. 8.

Farmer Merchant Factory worker Government worker Student Homemaker Professional Other (specify ___________)

number

1003. What is the highest level of education you have completed?

1. 2. 3. 4. 5. 6. 7.

I did not finish primary school I completed primary school I completed secondary education I completed university-level I completed French-Arabic studies Koranic studies I have never studied

number

1004. How long ago were you diagnosed HIV+?

1. 2. 3. 4. 5. 6.

More than 5 years ago Between 3 and 5 years Between 1 and 2 years Between 6 months and 1 year Less than 6 months I have not been tested HIV+

number

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1005. In what kind of health center did you take the test?

1. 2.

3.

4. 5.

In a hospital In a health reference center (centre de santé de reference) In a community health center (CSCom) In an NGO In a private sector health center (CCDV, voluntary testing center, mobile clinic, etc.)

number(s)

1006. What inspired you to get an HIV test?

1. 2. 3. 4. 5. 6. 7.

Referred by a friend/relative/colleague Referred by a healthcare agent Referred by a PLHIV association Event activity Through the media For reasons related to marriage other (explain) ___________

number(s)

1007. Did you voluntarily consent to be tested?

1. 2.

Yes No

number

1008. Did you receive counseling before the test?

1. 2.

Yes No

number

1009.

With whom did you share the results of your test? (You can give more than one response.)

1. 2.

3. 4. 5.

Yes, with my partner Ye,s with a confidant (family member, friend, etc.) Yes, with my health service provider Yes, with my religious leader No, I did not share the results with other people

number(s)

Section 1B: Questions About Your General Health

1010. In general, how would you rate your state of physical health?

Very good

Quite good

Fair

Poor

1011.

In the past 3 months, have you had an opportunistic infection? (tuberculosis, STI, dermatosis, shingles, Kaposi sarcoma, etc.)

1. 2.

Yes No

number

1012. Do you take medicine to prevent opportunistic infections?

1. 2.

Yes No

number

1013. If YES, have you had problems accessing medicine to treat opportunistic infections?

1. 2. 3. 4.

Yes, sometimes Yes, often Yes, very often No

number

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1014. When was the last time you had your CD4 count?

1. More than 12 months ago 2. More than 6 months but less than 12

months ago 3. More than 3 months but less than 6

months ago 4. In the last 3 months 5. Never

number

1015.

How many times have you completed the CD4 count laboratory test in the past 12 months?

1. Once 2. Twice 3. 3 times 4. More than 3 times 5. I did not have a CD4 count done in

the past 12 months

number

1016. How many times have you had the Viral Load laboratory test in the last 12 months?

1. Once 2. Twice 3. 3 times 4. More than 3 times 5. I did not have a viral load laboratory

test in the past 12 months

number

Section 1C: PLHIV Associations

1017. Are you a member of a PLHIV association?

1. Yes 2. No

number

1018. Do you participate in activities of a PLHIV association?

1. Yes 2. No

number

1019.

Are you involved in accompanying someone close to you (family, friend) in seeking reproductive health services?

1. Yes 2. No

number

1020. Are you aware of the existence of legislation that protects the rights of PLHIV?

1. Yes 2. No

number

1021. Do you know of legal recourse mechanisms in the event that your rights are violated?

1. Yes 2. No

number

Section 1D: Other Services

1022. Have you ever received the benefit of revenue-generating activities?

1. Yes 2. No

number

1023. If YES, were you satisfied with the services of revenue-generating activities?

Very good

Quite good

Fair

Poor

1024. Have you ever received services for baby milk provisions?

1. Yes 2. No

number

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If YES, were you satisfied with the 1025. baby milk service provision?

Very good Quite good Fair Poor

Section 1E: ART (Antiretroviral) If the person responds NO to question 1026, skip to question 1030, and DO NOT respond to questions 1050, 1051, 1052, 1053.

1. Yes 1026. Are you under ART?

2. No number

Have you ever had any of the secondary effects of ARV? (Fatigue, nausea, diarrhea, insomnia, vomiting, vertigo, lipodystrophy, nail discoloration, libido problems, 1. Yes

1027. neuropathological problems, 2. No number allergies, skin burns, anemia, hepatitis, renal kidney stones, lactose intolerance, lactic acidosis, etc.)

Do you take your ARV medications 1028. at the specific times as prescribed

by your doctor?

Always Very often Not always Rarely

1. I forget 2. I am away from the house for long

What difficulties have you periods of time encountered in taking your ARV 3. Travel (voyages) medications? 4. The presence of others

1029. 5. Stock outages number(s) (Question may have multiple 6. Secondary effects responses.) 7. Conservation problems

8. Other (specify) ___________

Section 1F: Access and Quality of Health Centers

1. Less than 1 week ago 2. Between 1 and 3 weeks

When was your last visit to a 3. Between 3 and 6 weeks 1030. health center? 4. Between 6 weeks and 3 months number

5. Between 3 months and 6 months 6. More than 6 months ago

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1031. In which kind of health center?

1. Hospital 2. Health reference center 3. Community health center (CSCom) 4. NGO 5. Private center (clinic, etc.) 6. Other (specify) _________________

number

1032. Is it easy for you to access the health center you last visited?

Very easy

Quite easy

Not easy

Hard

1033. How long does it take you to travel to your health center?

1. Less than 30 minutes 2. Between 30 minutes and 1 hour 3. Between 1 and 3 hours 4. Between 3 and 6 hours 5. More than 6 hours

number

1034. What is the cost of transportation (in CFA)?

1. Less than 100 francs 2. From 100 to 500 francs 3. From 500 to 1000 francs 4. From 1000 to 5000 francs 5. More than 5000 francs

number

1035. What was the financial impact of this transportation cost on you?

1. Not expensive 2. A bit expensive 3. Moderately expensive 4. Very expensive

number

1036. Did you have to wait more than 60 minutes to see your health care service provider?

Never

Sometimes

Often

Very Often

1037.

Was confidentiality maintained with the health services that are offered to you during your last visit?

Very good

Quite good

Fair

Poor

1038. How would you rate the quality of your reception by the health care staff of the health center?

Very good

Quite good

Fair

Poor

1039. Did the health care workers avoid you?

Never

Sometimes

Often

Very Often

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Can you easily communicate with 1040. your doctors?

Very easy Quite easy Not easy Hard

How well does your health service 1041. provider listen to you?

Very well Quite well Not well Not at all

How often are the medications 1042. prescribed to you available?

Always Often Sometimes Never

Section 1G: Access and Quality of Health Care in General

Have you ever been the victim of 1043. language that you consider

discriminatory?

Never Sometimes Often Very Often

Has someone pointed you out (drawn attention to you or pointed

1044. at you) in a negative way in the health services?

Never Sometimes Often Very Often

In the health care facility, did you ever feel that you were the victim of

1045. inappropriate isolation (physical separation from others) due to your

seropositive status? Never Sometimes Often Very Often

If you have ever spoken to your health care provider about the desire

1046. to have a child, did he/she give you appropriate advice? (This response is

optional.) ______________ Always Often Sometimes Never

Were you denied services in a health 1047.

care facility?

Never Sometimes Often Very Often

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1048.

Has your health care provider maintained confidentiality regarding the subject of your seropositive status?

Always

Often

Sometimes

Rarely

1049.

Have the health care providers provided you with services and references that are adapted to your needs?

Always

Often

Sometimes

Rarely

1050. How often have you been given less than 1 month’s supply of ARV medication?

Never

Sometimes

Often

Very Often

1051. How often have you been faced with a stock outage of ARV medication at the pharmacy?

Never

Sometimes

Often

Very Often

1052.

How often have you been without ARV medication at the moment that you should have taken it according to your prescription?

Never

Sometimes

Often

Very Often

1053. How often do you have a reference (reminder) for your ARV medications?

Always

Often

Sometimes

Never

1054. In your opinion, are the expenses for the health care services that are available to you appropriate?

Very good

Quite good

Fair

Poor

1055.

Are the expenses that you have occurred over the past 3 months for your medication appropriate for you?

Very good

Quite good

Fair

Poor

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1056. Have you ever had to pay for services that are supposed to be free from the government?

Never

Sometimes

Very Often Often

Very Often

1057. Have you ever had to pay for medication that is supposed to be free from the government?

Never

Sometimes Often

Very Often

1058. Have you ever been deprived of services because you could not pay?

Never

Sometimes Often

1059. Are you satisfied with the quality of treatment and the care that you receive?

Very good

Quite good

Fair Poor

GENERAL OBSERVATIONS: Please mention any noteworthy observations regarding the administration of this interview.

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