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Mapping of Community Home-Based Care Services in Five Regions of the Tanzania Mainland

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PATHFINDER INTERNATIONAL Mapping of Community Home-Based Care Services in Five Regions of the Tanzania Mainland June 2006 Table of Contents Acknowledgements 2 Executive Summary 3 Background 6 Objectives and Methodology 8 Findings 11 Findings from Focus Group Discussions: Cross-Cutting Themes 11 Focus Group Discussions with People Living with HIV/AIDS 18 Focus Group Discussions with Community Health Workers 20 Focus Group Discussions with Primary Care Providers 23 Consultations with CMAC members and Key Informants 25 Discussion 29 Overall Recommendations 31 List of Acronyms AIDS Acquired Immune Deficiency Syndrome ARV Antiretroviral CBOs Community-Based Organizations CMACs Council Multisectoral AIDS Committees CHWs Community Health Workers CHBC Community Home-Based Care DCCO District AIDS Control Coordinator FBO Faith-Based Organization FGD Focus Group Discussion HBC Home-Based Care PASADA Pastoral Activities and Services for People with AIDS Dar es Salaam Archdiocese PMTCT Prevention of Mother-to-Child Transmission PLWHA People Living with HIV/AIDS TACAIDS Tanzania Commission for AIDS TIS Tanzania HIV Indicator Survey VCT Voluntary Counseling and Testing PATHFINDER INTERNATIONAL Mapping of Community Home-Based Care Services in Five Regions of the Tanzania Mainland June 2006 1 Acknowledgements We wish to thank many institutions and individuals who have contributed information collected in this report or extended support in the gathering of the information. First and foremost, we wish to recognize the United States government, through the Centers for Disease Control and Prevention, for providing the financial support for the Home-Based Care Project. Our words of gratitude are extended to the National Institute for Medical Research for reviewing the study protocol and granting research clearance, and to the National AIDS Control Program for facilitating research clearance. We wish to thank Dr. Fatma H. Mrisho, principal investigator, and Peter M. Riwa, associate investigator, for providing technical leadership in the design, development, and implementation of the research as well as consultation on the development of the final report. Local government institutions provided necessary support in organizing groups of men and women in the five regions visited by teams to collect information. We are particularly thankful to the offices of the district medical officers and district administrative secretaries and to the Red Cross Society of Tanzania, Tanga and Morogoro offices, for the logistical support accorded to the study teams. Special gratitude goes to the many men and women with chronic illnesses who agreed to be consulted and interviewed and selflessly shared their thoughts. We thank the community health workers, family caregivers and all the municipal, regional, and district authorities and officials of the various organizations with whom the team met. We thank the members of Council Multisectoral AIDS Committees and others who participated in key informant interviews. Much gratitude also goes to all the people living with HIV/AIDS, primary care providers, and community health workers who gave their time and valuable input in focus group discussions. We wish to acknowledge the contributions of Carol Mushi, Hoka Panya, Charles Mtoi, Michael Machaku, Esabella Neeso, Bahati Kimbo, and Mary Missokia of Pathfinder International/Tanzania for their hard work and support. Finally, Carolyn Boyce of Pathfinder International headquarters is acknowledged for her technical assistance and review of the document. Karen Ryder, Alden Dillow, Tara Vecchione, and Mary Burket are also acknowledged for their assistance in the finalization of this report. Nelson A. Keyonzo Country Representative, Pathfinder International/Tanzania 2 Executive Summary Introduction and rationale Since December of 2001, Pathfinder International/Tanzania has supported Home-Based Care (HBC) activities in the regions of Arusha and Dar es Salaam. Pathfinder plans to expand its HBC support to more wards in these two regions and to the regions of Tanga, Morogoro, and Kilimanjaro. Pathfinder commissioned this study, with funding from the Centers for Disease Control and Prevention, to determine which Nongovernmental Organizations (NGOs), Community-Based Organizations (CBOs) and Faith-Based Organizations (FBOs) are providing HBC to people with long-term chronic illnesses—the majority of whom are assumed to be People Living With HIV/AIDS (PLWHA)—in the five program regions. The study also aimed to identify the significant gaps, challenges, and successes of HBC. The objectives of the study were to: • Review available information to understand the magnitude of the problem, the number of PLWHA, and the extent to which their basic needs and those of their caregivers are being met in the five program regions; • Identify potential partners on the basis of their comparative advantage for comprehensive HBC in Dar es Salaam and Arusha municipalities and in the new regions of Morogoro, Tanga and Kilimanjaro; • Assess the effectiveness of community AIDS committees established by local government authorities in supporting Community Home-Based Care (CHBC)1 programs; • Identify existing resources for a two-way referral system and assess the capacity of existing service networks; and • Identify local organizations best positioned to holistically address the needs of PLWHA and their communities. Intended use of the study The study documents the concerns of PLWHA, Community Health Workers (CHWs), primary care providers, and other stakeholders to inform Pathfinder’s support to national efforts to scale-up CHBC. The proposed project aims to replicate Pathfinder’s successful CHBC model for PLWHA in other areas and improve access to HBC for more Tanzanians. Data and Methods The data is mostly qualitative, collected through focus group discussions, key informant interviews, and literature review. Data collection took place over two weeks in November 2005. The study was conducted in ten municipalities and district councils in five regions of the Tanzania mainland including: Arusha municipality and Arumeru district in the Arusha region; all districts in Dar es Salaam; Moshi municipality and Moshi rural in Kilimanjaro; Morogoro municipality and Mvumero district in Morogoro; and Tanga municipality in Tanga. All focus group discussions included both men and women. 1 Home-Based Care (HBC) services are provided in the home through outreach from a static medical facility. Community Home-Based care is similar, but the service provider is a community member trained in health care, rather than a professional based in a clinic. 3 Government leaders at the national and sub-national level, members of Council Multisectoral AIDS Committees (CMACs) at the municipal, district, and ward levels, and officials responsible for referral for medical, legal, spiritual, and material support, participated in key informant interviews. By virtue of their positions as heads of NGOs and municipal and district functionaries, the majority of the key informants were also council multisectoral HIV/AIDS co-opted or full committee members. Under the guidance of the team leaders, eight trained interviewers collected data for two weeks, spending two days per municipality or district. Team leaders performed the key interviews at the national level. Significant Findings Magnitude of the problem and meeting needs: Key informants and CHWs were asked for information on areas in their localities that have higher HIV transmission rates. Interviewees consistently mentioned the same places and similar reasons for the high transmission. Such places tended to be more populated, urban or peri-urban centers. Some have major factories (e.g., sugar factory in Morogoro, cement factory in Tanga, and livestock market in Dar es Salaam). Commercial sex and alcohol were described as major risk factors. National HIV prevalence information for the five regions shows that Dar es Salaam has the highest prevalence at 10.9%, followed by Kilimanjaro (7.3%), Tanga (5.7%), and Morogoro (5.4%). The lowest prevalence is in Arusha at 5.3%. In the five project regions, CHWs trained by HBC programs were found to have an average of five clients each. They train family caregivers in basic nursing, management of minor ailments, referral for complications, legal and spiritual services, and voluntary counseling and testing. CHWs also perform a variety of services both to demonstrate care to family members and to serve as an important link in the continuum of care. Overall, it was estimated that about a third of PLWHA do not have people to care for them, indicating a significant unmet need for HBC. For patients who do not have any family members to care for them, their CHWs may be the only people providing care. HBC Partners: Organizations providing HBC are shown in Annex 2. There were 30 organizations identified in Arusha, 24 in Dar es Salaam, 22 in Morogoro, 35 in Kilimanjaro, and 18 in Tanga. Seventeen organizations had a presence in more than one of the study districts or municipalities. Pathfinder, Walio Katika Mapambano ya AIDS (WAMATA), and Service Health Development and Education for People Living With HIV/AIDS (SHIDEPHA) operated in four or more districts. Forty-seven percent of the organizations provide HBC. The remaining 53% provide services supportive of HBC, including information, education, and communication, voluntary counseling and testing, material support, legal aid, health services (some including antiretroviral therapy and prevention of mother-to-child
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