TITLE: Community-based Palliative Care for PLWHA in Lindi and Mtwara

NEED and COMPARATIVE ADVANTAGE: Many people living with HIV/AIDS in Tanzania have no access

to organized palliative care services in their communities. With more patients placed on antiretroviral

therapy (ART), there is need to emphasize drug adherence to prevent resistance, provide basic care and

support, and implement preventative services among those who are positive. Innovative community home-

based care (HBC) programs are an ideal response to the issues raised above. Axios has a demonstrated

record of accomplishment of working at the community level in Tanzania in response to HIV/AIDS.

ACCOMPLISHMENTSAs a component of voluntary counseling and testing (VCT) and Prevention of Mother

-to-Child Transmission (PMTCT) programs, Axios Partnerships in Tanzania (APT) has trained over 300

HBC volunteers and 650 community workers to provide Nevirapine. In addition to providing HBC to over

4,600 people living with HIV/AIDS (PLWHA) across seven regions, it has created and linked HIV post-test

clubs to income-generating activities (IGAs).

ACTIVITIES:The approach used by APT is to enlist trained volunteers from the community and local non-

governmental organizations (NGOs) to provide support for PLWHA and their families, empower PLWHA to

live positively, provide pain relief and basic nursing support, prevent and treat opportunistic infections (OIs),

and make referrals to health and social services. Taking advantage of programs funded centrally by the

USG, APT will also distribute vouchers for insecticide treated mosquito nets (ITNs), provide access to safe

water, and distribute IEC materials to promote preventive behaviors. Starting in FY 2008, APT will

strengthen referrals and linkages with the care and treatment programs in Lindi and Mtwara supported by

the Clinton Foundation, and the PMTCT programs supported by the Elizabeth Glaser Pediatric AIDS

Foundation. It will also encourage community empathy and response, critical for prevention, care, support,

and treatment for PLWHA. Presently, there are no USG-funded palliative care programs in Lindi or Mtwara.

Palliative care service delivery will ensure that clients receive quality HBC services in their homes. PLWHA

will be identified in the community and through referrals from local HIV/AIDS care and treatment clinics.

Caregivers will be trained on basic nursing care, provision of pain relief and drugs for OIs, malaria

prevention, and nutritional counseling using the national curriculum. Financial support will be provided for

volunteers to cover transport costs, and non-monetary mechanisms for recognizing volunteers to minimize

turnover and "burnout" will be employed.

Community recognition, acceptance, involvement, and ownership of programs are critical to a successful

community programs. These factors will leverage community support and encourage volunteerism to serve

the needs of PLWHA. In introducing services in Lindi and Mtwara, an initial step is to conduct a community

baseline assessment, as well as community sensitization and mobilization meetings.

Once local NGOs that can oversee service delivery are identified, their capacity will be strengthened to

manage and provide HBC services and to ensure fiscal accountability. Quality measures will be

established, and programs will be strengthened where services do not meet quality standards. Peer

support groups for PLWHA will be organized and/or strengthened. APT will facilitate the formation of

support groups such as HIV post-test clubs, and establish systems for linking PLWHA to community

programs, especially for nutritional support and income-generating programs, faith-based organizations for

material support, or other community organizations according to their needs. Because these are both

expansion regions for HBC, this component will be labor intensive.

Providing quality community HBC services depends on large numbers of trained volunteers. APT will

identify existing volunteers, improve their capacity and competence, and recruit new volunteers. New and

refresher training for trainers on community HBC, ART adherence, palliation, identification of vulnerable

children identification, and prevention for positives will be conducted. Volunteers and NGOs will also need

to be trained on monitoring and evaluation, reporting, and supervision. A key component of training will be

to identify needs and ensure systems for appropriate referrals, especially to facility-based care and

treatment, preventive services (e.g., family planning), PMTCT, TB screening and treatment, community food

security programs, income-generating activities, and community social services.

The program will draw upon centrally procured HBC working tools and IEC materials. In the event they are

not available, APT will procure these materials. APT will also procure and distribute bicycles for hard to

reach areas.

LINKAGES: APT will work closely with the Ministry of Health and Social Welfare, the National AIDS Control

Programme (NACP), and TACAIDS at the national level. It will participate in the coordination activities of

NACP. At the local level, APT will work with the regional and council health management teams

(RHMT/CHMT) and the district and village multi-sectoral AIDS committees to ensure sustainability.

Specifically, APT will collaborate with national networks for PLWHA and other local organizations to link

PLWHA and their families to services provided by these organizations. APT will link with the USG

arrangements made for participation in the national voucher scheme for ITNs, nutritional supplementation,

and procurement of HBC kits.

CHECK BOXES: The project will be implemented in two undeserved regions covering all 12 districts.

Targeted populations are PLWHA, other critically ill patients, and OVC and their caregivers. Referral

linkages with existing facilities and coverage of areas with little or no HBC will be given priority. Local

organizations will be strengthened to ensure fiscal and programmatic accountability.

M&E: APT will use MOHSW/NACP tools for adherence to the national standards of M&E. Registers

provided to HBC providers will ease follow up. All community HBC volunteers will monitor and report to

facility HBC provider and the local NGO responsible for monthly data compilation. APT will participate in

the development of the national monitoring system. When it is completed, APT will ensure the local

application and maintenance of the system in Lindi and Mtwara. Supervision will be conducted quarterly by

CHMT in collaboration with APT manager. The supervision team will conduct random visits to homes of

clients served to discuss the quality of services provided by the HBC providers in order to assess the quality

of home services. Reports will be submitted to district HIV/AIDS control coordinator for eventual submission

to NACP. Data management and analysis will be conducted by APT and shared with MOHSW, donor, and

all other stakeholders.

Activity Narrative: SUSTAINAIBLITY: Community involvement, from the planning stage through implementation of activities,

creates program ownership and sustainability. Building the program within existing health facilities ensures

increased staff capacity to manage services. Small-scale IGAs established for families and post-test clubs

members will ensure financial independence and affordability of basic needs. Involvement of a HBC facility

supervisor and CHMT in supervision and the use of the MOHSW and NACP tools for M&E will facilitate

smooth hand-over.