A taxonomy for community-based care programs focused on HIV/AIDS prevention, treatment, and care in resource-poor settings

Figures & data

Table 1 Taxonomy of community-based care (CBC) programs

Category	Item	Working definitions
1. Region		Geographic location (e.g. region, country)
2. Vision	Vision, mission, values	Overall mandate, goals or other broad rationale
3. Characteristics of target population	Level of urbanization	Intra-country locations of client-patient populations (e.g. urban, peri-urban, rural)
	Targeted population	Primary population of interest (e.g. PLWHA)
	Vulnerable groups included	Inclusion of other affected populations (e.g. migrants, men who have sex with men)
4. Program scope (services provided)	Location of services
	At home	Service provision and care in client-patient's home
	In the community, outside of the home	Care outside of the home in community agencies or sites
	Both in and outside of the home	Care provision in both settings
	Types of Services
	HIV prevention activities	Services, including condom distribution, prevention education
	HTC	Services of HIV testing and counseling
	PMTCT	Provision of antiretrovirals for the prevention of mother-to-child transmission of HIV
	ART	Provision of antiretroviral therapy and follow-up care (e.g. adherence monitoring and support)
	Medical and nursing support	Basic medical care, including treatment and management of STI (sexually transmitted infections) and OI (opportunistic infections)
	Nutrition support	Nutritional support, including provision of food supplements
	Palliative care	Care and support for terminally ill patients
	Financial support	Income generating activities or provision of funds (e.g. community funds).
	Material support	Technical support (e.g. training, lifeskills) or provision of material supplies (e.g. soap).
	Psychosocial support	Social support and counseling
5. Program operations	Extent of community engagement (in operations)	Community involvement in overall operations (e.g. decision making, planning, accountability)
	Reach	Overall reach or coverage geographically (e.g., how many sites the program has) or by population (e.g. how many patients of what kind are served)
	Service delivery model	Primary mechanism used to achieve coverage (e.g. decentralization)
	Embeddedness in formal health and social structures	Degree of entrenchment within existing structures (e.g. number and types of partnerships or collaborations)
6. Funding models	Sources of funds	Revenue – who pays what (i.e. donations, funders), diversity
	Fund utilization	Use of funds (e.g. what money is needed and used for what purposes)
	Budget and financial mechanisms	Spending plan (e.g. how budgets are set, how spending is regulated and monitored)
7. Human resources	Organizational structure	Hierarchical or horizontal structure and responsibilities of individuals and groups (e.g. advisory boards)
	Staff composition (volunteers, paid staff)	Staff make-up and positions of individuals within team
	Training and mentorship	Incorporation of training activities and opportunities for mentorship
	Management and supervision	Extent to which staff are managed and/or supervised
8. Sustainability	Availability of ongoing funding	Promises or plans for ongoing financial support
	Staff retention strategies	Ability to retain staff though the use of incentives (e.g. compensation)
	Replicability of program	Adaptability and ability to be reproduced in a new setting
9. Monitoring and evaluation	Evaluation strategies	Mechanisms to determine overall success and impact (i.e. how programs are being evaluated)

Table 2 Program descriptions by taxonomy categories

CBC program	Region	Vision	Characteristics of target populations	Program scope	Program operations	Funding models	Human resources	Sustainability	Monitoring and evaluation
AIDS Foundation Est. 1988 (first registered NGO in South Africa) (Source: AIDS Foundation South Africa website)	Africa: South Africa	To be the leading organization supporting CB developmental interventions in the HIV/AIDS epidemic	– Members of selected CBO targeting HIV prevention, Culture and Health, HBC, Care for OVC, Poverty alleviation. – target members of sexual minority populations including individuals who identify as Lesbian Gay, Bisexual, Transgendered	– Community – Training for HBC, provides program management, report writing, research and program monitoring & evaluation	– Links and places donor funds with selected CBO – Mentoring and capacity building – Partners include the AIDS Consortium, Treatment Action Campaign, Basic Income Grant Coalition, KZN Civil Society Network, HIVAN – Includes 94 partner organizations local and at national level – 7 provinces in South Africa – Supporting 83 CBO	Donors include: – Bernard van Leer Foundation, Ford Foundation, Elton John AIDS Foundation, Artist for a New South Africa – Norwegian Church AIDS, and Bread of the World – Canadian and Swedish International Development Agencies, Irish AIDS	– Staff of 31 – Governed by Board of Directors (6 board members)	– Board of Directors maintain organization focus and accountability – reputation for professionalism	– Monitor and evaluate, identify assistance needs, quality assurance, set standards – Examine outcomes at end of three-year cycles – Conduct research and evaluation – Annual reports
Catholic Diocese in Ndola Est. 1993 (Source: Fikansa, 2005) New Source: Stop AIDS Now 2009	Africa: Zambia	To operate on a non discrimination basis	– PLWHA, families, OVC, Community Care Givers – Urban and rural districts	– Home, community – HTC, ART, HBC, medical care, nursing care, TB, psychosocial support, pastoral support, welfare support for households, IGA, PMTCT, microfinance	– Provision of care incorporates community volunteers and integrated through local hospitals, partnerships with community resources to build capacity – 13 home-based care centers – 44 shanty compounds – 5 towns – interdominational approach		– Coordinator, and nurses oversee community volunteers – Training and follow-up courses	– Linked to National AIDS Council Strategic Framework	– Program monitoring, reporting (on a half-yearly basis
Centre for Positive Care Est. 1993 (Source: Centre for Positive Care website)	Africa: South Africa	To reduce the spread of STI, HIV/AIDS and improve the quality of life	– PLWHA, OVC, CBO staff	– Home, community – HIV prevention & risk reduction programs, VCT, PTMCT, HBC, STI treatment, palliative care, lay counseling, spiritual support, peer education, train family, material supplies (e.g. seeds for gardens)	– Incorporates community leaders, community members trained as peer-educators – Partners with local, national, international organizations – 4 districts – Community driven approach	Donors include: – Department of Health (South Africa,), European Union – Bristol-Myers Squibb Foundation – Nelson Mandela Children's Fund, Family Health International, National Development Agency, Christian AID, Reggio nel Mondo, AusAID, OXFAM, Save the Children UK, VSO	– Board of Directors-staff and local community members, including local magistrate – Volunteers supervised by coordinators – Mentorship to lay counselors	– Stipends and incentives for retention – Continued training through a learning institution – Training of local volunteers to carry on activities	– An evaluation was performed by Nelson Mandela Children's Fund – Evaluation on pediatric palliative care
Chirumhanzu HBC project Est. 1994 (Source: Family Health International)	Africa: Zimbabwe	To meet the needs of PLWHA and their families and to provide necessary info, skills, care, & support	– PLWHA, family members, caregivers – Rural area	– Home, community – Prevention campaigns, HBC, support groups, life skills, drama clubs, recreational activities, awareness campaigns, IGA, referrals for medical care	– Partnered with St. Theresa's Hospital with support from traditional healers, local chiefs – Builds on African traditions of family support and mutual obligation	– Support from UNICEF – Support for nursing materials and drugs from the MOH	– HBC volunteers – Senior nurses, sisters & foreign doctors provide supervision	– Volunteers receive monetary compensation – Annual report for accountability	– Monthly review of HBC program – Monthly meetings of project members
Dignitas International Est. 2004 (Source: Dignitas International)	Africa: Malawi	To increase prevention, treatment and care, develop and disseminate solutions that harness community solutions – Stand up for those who lack access	– PLWHA, family members, community members, CHW, vulnerable populations (e.g. women, youth, soldiers, prisoners) – mostly rural with urban town centre	– Home, community – Distribute condoms, VCT, PMTCT, ART, adherence monitoring, treat and prevent OI and STIs, HBC, palliative care, psychosocial care, information, education and communication	– Collaborates with Zomba Central Hospital, District Health Office, Christian Health Association of Malawi, public health researchers, academic institutions & Malawian health authorities – District-level: population 670,000 – decentralization to 25 health centers – expansion to other districts	Donors include: – BMO financial group, Donner Canadian Foundation, MAC AIDS Fund, Peterborough KM Hunter Charitable Foundation, Sullivan Entertainment – Rotary International, Stephen Lewis Foundation – St Michael's Hospital Foundation – USAID	– Clinicians receive ongoing training through MOH – On-the-job training and support	– Knowledge translation through operations research team – Strategic plan – Expansion to other districts	– Regular monitoring – Publication in peer review journals – Annual reports
Family AIDS Caring Trust (FACT) and Family, Orphans and Children Under Stress (FOCUS) – FACT est. 1988 – FOCUS est. 1993 (Source: DeJong, 2001, FACT website)	Africa: Zimbabwe, Mozambique	To be a renowned, result-focused quality program that facilitates sustainable programs on mitigation of the impacts of HIV/AIDS To respond to the growing number of malnourished OVC	– PLWHA, OVC, family members & caregivers – urban and semi-rural settings	– Home, community – HBC, nutrition support, counseling, pastoral support, bereavement support, trains family in infection control, household assistance, material assistance (food, soap), legal aid & advice, workshops, referrals for medical care	– Incorporates church life – Works with church-based CBO, NGO, and ministries and institutions at the local, national, and international level – Multi district, parts of Mozambique – Focus on community mobilization	Donors include: – Save the Children (USA), UNICEF, Plan International (Mutare), Action AIDS International, CHF, Concern Worldwide, Healthlink Worldwide, Population Services International – Global Fund – European Commission	– Recruits CHW, enlists church members		– Evaluation to highlight gaps and areas for improvement – Evaluate impacts of workshops
Hope Worldwide Siyawela Community Child Care Est. 1999 (WHO, 2002)	– Africa: South Africa	To respond to growing numbers of OVC	– Children, OVC, immediate families and caregivers	– Home, community prevention education, VCT, PMTCT, HBC, nutrition, psychosocial support, victim support, recreational activities, life skills, food parcels, microfinance, community-based research project, referrals	– Partnerships with microfinance institutions, microenterprise development organizations, victim support groups, VCT& PMTCT specialists & preschools and Perinatal HIV Research Unit – bridge gaps between central hospital and 12 community health clinics – focus on community mobilization, community-based research and capacity building	– Volunteers	– Trains volunteers in child care and HBC	– overall program strategy	– Conducting participatory research to identify specific needs within the community – research findings feed into strategies to improve program operations
Khutsong Centre and Heartbeat orphan programme Est. 1998 (WHO, 2002) Save the Children 2006)	Africa: South Africa	To build trust	– PLWHA and their families – in a gold mining town	– Home – Poverty alleviation, IGA and support, training in life skills, food parcels	– Established by Carletonville AIDS Action Committee – partnerships continually developing (schools, churches, support groups) – partnership driven: within team and with ill people, families, community, and agencies and ministries – 4 communities	Donors include: – government ministries (Health, Social Development, Justice, Education and Agriculture) – mining company & bank – Save the Children UK	– Team: nurse coordinator, social worker, orphan care workers, nurses and caregivers – paid care-givers – local member of parliament sits on project committee	– Care-givers visit child headed households on a regular basis – developed comprehensive training program – handed over day-to-day running to Sakhi Sizwe Community Child Forum to focus efforts on establishing new programs	– Some M&E activities in annual Operational Report
Lusikisiki Clinic (Source: Bedelu et al., 2007)	Africa: South Africa	To deliver HIV care & services through decentralization, task shifting within services, training & mentoring staff, creating strong community support	– PLWHA – Rural	– Home, community – VCT, PTMCT, ART, HIV management, HBC, TB diagnosis, treat OI	– Sub district reach – Decentralization and task-shifting as service delivery model	– Support through MSF	– ARV program run through nurses & CHW, supported through regular physician support (including mobile teams) and adherence counselors – community caregivers mentored, nurse supervision – overseen by MSF	– Clinic committee represents users with complaints, advocate for better infrastructure, drug supply – quarterly evaluation of outcomes of HIV care – weekly meetings and workshops to build capacity	Monitoring and evaluation, quality control – clinical outcomes
Moretele Sunrise Hospice HBC Est. 1998 (WHO, 2002)	Africa: South Africa	– To address HIV/AIDS	– PLWHA, OVC, palliative patients, families – rural	– home – VCT, prevention education, HBC, nutrition support social support, disclosure support, bereavement counseling, food parcels, assistance with gardens, life skills, recreation programs, IGA, referrals	– 27 health clinics and 78 villages within 120km – inter-disciplinary approach	Donors include: – VSO – government – international	– Interdisciplinary team (palliative nurse, social worker, physician, pastor & psychologist) – supervisors trained to manage CHW – ongoing training and mentoring	– Community mobilization – satellite programs set up to provide services to those who live far	– Conduct research
Reach Out Mbuya Parish HIV/AIDS Initiative Est. 2001 (Source: Reach Out Mbuya website, Chang et al., 2009)	Africa: Uganda	– a community free of the spread of HIV and where persons with HIV/AIDS are living positively with an improved quality of life	– PLWHA, OVC, guardians, partners, families, poor and vulnerable – urban/rural	– home, community – VCT, HBC, ART, PMTCT, laboratory testing, pharmacy, OI, adherence support, TB tracing, psychological support, food support, community sensitization, IGA	– faith based community program focused on holistic model of care – multiple partners including several ministries and the Makerere University School of Public Health – 6 village catchment area, 1 main site, 3 satellites	Donors include: – Friend for Reach Out, Makerere School of Public Health, Kampala City Council – Barclay's Bank – PEPFAR, CDC, Medical Mission International, SidEcole, ROSE, Infectious Diseases Institute, Danish Group, Program for Accessible Health Communication and Education, Australian Embassy, Uganda Bikers Association – Global Fund, Stephen Lewis Foundation CARE Uganda	– Executive Director and 8 member Board of Directors – Chaired by Parish Priest – 258 staff (2009), 147 volunteers (local and international) – team leaders in each village works with team of community workers	– 5 year strategic plan – internal audits – on-going training for all staff	– department with Research Capacity and Capability Group – Annual Reports, presentations at conferences – patient tracking through electronic registry
Scaling Up Through Expanded -Partnerships (STEPS) Est. 1995 (Source: Kadiyala, 2004)	Africa: Malawi	– goal to mobilize sustainable community action to prevent the spread of HIV & mitigate the impact on OVC and families	– PLWHA, households, OVC, community members	– prevention, risk reduction, HBC – social support, poverty alleviation, food security for HIV-affected households, HIV advocacy, fundraise & resource mobilization, early childhood care support, life skills training	– Village AIDS committees identify the vulnerable, then plan responses – operates in 8 districts – multi-sectoral approach	Donors include: – Save the Children USA	– volunteers, teachers, community action groups mobilized	– develop subcommittees to build capacity (district, community and village level) – model adapted in Ethiopia, Mozambique, Zambia through partnerships and training by other NGO/CBO – strategic plan for financial sustainability	– manage, monitor & evaluate, accountable decision making process
Thandanani Children's Foundation Est. 1989 (Source: Thandanani website)	Africa: South Africa	To keep children in their own communities – name means ‘love one another’ in Zulu	– OVC, families – urban centre surrounded by peri-urban and semi-rural areas	– home, community – HBC, assistance with school fees, support & develop community-based Early Learning Centres, facilitate establishment of gardens, volunteer-driven IGA, establishment of saving groups, welfare assistance, referrals for medical care	– focus on advocacy & community mobilization – community leaders, residents, volunteers identify children who are abandoned, abused or at risk of being orphaned – reach: 16 communities	– Donors include: – South Africa Department of Welfare – Chevron (local) – Lawyers for Human Rights, Christian AIDS, Catholic Agency for Overseas Development, Stephen Lewis Foundation, Kindernothilfe, Belgium Embassy, CAFOD – financial report annual	– community residents, leaders, volunteers – Staff of 21, team of 109 volunteers – volunteers receive training and support – 5 person Board of Directors – Staff in 4 areas: Management and Administration; Development, Development and Direct child Support, Welfare and Early Childcare, Health	– hold regular volunteer meetings – staff and volunteers paid salary (highly dependent on economy)	– monitor regularly – produce Annual Report and articles on their programs
The AIDS Support Organization (TASO) (Source: TASO website) Est. 1987 largest indigenous NGO in Africa indigenous	Africa: Uganda	– A world without AIDS – founding based on principle that people were unified by common experiences faced with encountering HIV at a time of high stigma, discrimination and ignorance.	– PLWHA, families, communities	– home, community – prevention strategies, medical care, ART, HBC, outreach clinics, nutritional support, disclosure counseling, social support, material support, day care center, apprenticeship program, AIDS youth club, HIV advocacy	– partnership with MOH & other stakeholders, provides opportunities for trainees from other parts of Africa area – 11 service centers, 22 ‘mini-TASOs’ in regions outside catchment – build capacity	Donors include: – government Ministry of Health, Uganda AIDS Commission – Civil Society Fund, Danish International Development Agency, CDC, Swedish International Development Agency, UK Department for International Development, Irish AID	– membership organization governed by Board of Trustees – Regional Advisory Committees and Centre Advisory Committee to guide operations in different regions – staff, volunteers – training in community skills, specialized skills, information & knowledge in care. – training of the trainers	– strategic plan to reinvigorate prevention strategies through enhanced partnerships local, national, and international	– client views incorporated to provide feedback – operational research (formalizing internal research structure) – publication in peer-review journals
Tumelong Hospice and Lekegema Orphan Haven Est. 1999 (WHO, 2002)	Africa: South Africa	To let people die in peace – Tumelong is a Tswana word for ‘place of faith’ – provide orphans with holistic care	– PLWHA, most between 15–25, OVC and the communities where they live, grandparents, neighbors, and other orphan care givers – semi-rural (farmland) area	– home, community – HBC, palliative care, hospice, OI treatment, TB care, cancer care, bereavement counseling, material support, nursery, death certificate obtainment, counsels on inheritance rights & orphan grants, day care, weekend programs	part of larger Anglican mission (est. 1939) – holistic approach – reach: 1 million people in 8 townships	– Donors include: – government ministries – business (e.g. local supermarkets provide fresh and vegetables) – religious missions	– run by team of 18 lay CHW – team approach, staff, CHW, social workers, physician, nursing sister) – 1 worker/per 4–5 PLWHA – in-service training sessions	– regular meetings to provide mutual support – every 3 mo: staff has team-building break and families join in for recreational activities (transport provided) – plans for expansion
Kapit Kamay Sa Bagong Pag-Asa (Source: WHO 2002)	Asia: Philippines	To mitigate impacts of HIV/AIDS	– PLWHA, families	– livelihood assistance, micro-finance	– partnership between Philippines National AIDS Council, Centre for Community Transformation and the Pinoy Plus Association Inc – fund proposals all over country		– train management	– rigorous standards established for reviewing and disbursing funds	– identifies problems with program (e.g. confusion over loan repayment, distance between projects hard to monitor) and seeks to address
Servants to Asia's Urban Poor (SERVANTS) Est. 1996 (Source: Disability Action Council website)	Asia: Cambodia	To improve the lives of the poor	– PLWHA, migrant, squatter communities, children with disabilities, OVC, women – urban slum, brothels	– home, community – prevention education, provide condoms, HBC, malnutrition clinic for children, immunization, women's health program, pain relief, brothel clinic, treat STI, TB, counseling & support, sanitation program, education	– district level reach partner with local AIDS committee, numerous collaborators/partners including Veterans International, Center for Child Mental Health, TB center, Pasteur	– Donors include: – ROTANAK Foundation, Tear Fund UK – individual donors	– volunteers	– plan to extend program – run refresher courses – stipend for volunteers, programs for staff & family to avoid burnout (recreational activities, health and social assistance)
HIV Equity Initiative/ Zanmi –Lasanti (ZL) Est. 1998 (Source: Partners in Health, 2006)	Central America: Haiti	To provide care and treatment for HIV/AIDS	– PLWHA – in poorest country and worst HIV epidemic in western hemisphere	– community – prevention & risk reduction, VCT, PMTCT, ART, adherence monitoring, TB care, malnutrition, treat diarrhea, pneumonia, STI, reproductive care	– in 1998, ZL became world's first program to provide free, comprehensive HIV care and treatment – only NGO to provide comprehensive primary care – partners with other Haitian NGOs	– Donors include: – Global Fund to Fight AIDS, Tuberculosis and Malaria – strategic plan each year to review budget	– governed by Comite Executif – CHW or accompagnateurs supported by nurses, doctors, lab technicians, social workers	– compensation for volunteers, workers paid – project expanded to Peru, Russia, USA, Guatamala, Rwanda, Malawi, Lesotho, Burundi, Mexico, Kazakhstan, Dominican Republic	– extensive evaluation & dissemination of findings (reports, peer-review journals)
Project Hope-Projecto Esperanca Est. 1988 (legally constituted 1991) (Source: Family Health International, 2004)	South America: Brazil	Best therapy is to be with family, families should be helped to accept HIV, infected individuals and their families should be helped to demand & fight for their rights of citizens – motto: hand in hand in life	– PLWHA, caregivers of OVC, families – urban	– home, community – prevention & risk reduction strategies, HBC, nursing care, occupational therapy, emotional & psychological support, social programs, campaign for OVC, educational material & public talks aimed at specific groups including students, young people & housewives	– slum in city – partners with other 30 NGOs	– Donors: – local – Brazilian National AIDS Programme, – CAFOD-UK, Caritas-Holland, Austrian-DK	– sisters with support from local bishop – staff include paid staff, volunteers, godmothers/godfathers, casual workers – volunteers undergo orientation and training for 2 months	– incentives for unpaid staff include recreational activities, transport passes, month-long holidays – expanded to other centers	activity reports, monitoring – Produce manuals on community health worker curriculum and program management
Men as Partners Program Est. 1998? (Source: Engender Health website)	Global: 15 countries in Africa, Asia, Latin America and US	To mobilize men- to become actively involved in countering HIV and gender-based violence	– men as partners, women	– community – provide workshops on health and safety of men, women and child, incorporate gender, courage, activity and effects of HIV			– CHW and health care providers trained to provide workshops – ongoing training and technical assistance	– training manuals – to reach more men, build capacity within NGO sector, promote CB efforts to mobilize men – establish partnerships with Solidarity Centre, the AIDS Consortium, South African National Defense Force, Hope Worldwide, Perinatal HIV Research Unit at Chris Hani Baragwanath Hospital	– evaluation of pre- and post-workshops to determine change in attitudes
Pathfinder International Est. 1957 (Source: Pathfinder International website,	Global: 25 countries	– people everywhere should have the right and opportunity to live a healthy sexual and reproductive life	– PLWHA, orphans, youth – vulnerable groups: sex workers, injection drug users, displaced people, migrants, military workers	– home, community – VCT, counseling, ART, HBC, PTMCT, adherence support, OI prevention and treatment, TB prevention and care, family planning, training local volunteers, sensitization messages, referrals, IGA	– integrated HIV/AIDS care in early 1990's – reproductive health services as the center of all programs/services – partners with local, national, international partners	Donors include: – USAID, CDC, Swedish International Development Cooperation Agency, Brazil National AIDS Program, WB, United Nations Population Fund, Gates Foundation, McKnight Foundation, Trull Foundation, Ford Foundation, Tides Foundation	– Board of Directors, President – Senior leadership supports country representative – 752 field staff	– conduct studies to enhance program learning – multi-disciplinary Research and Metrics Staff build capacity for data-based evaluation for program learning Building – strengthen capacity of local organizations	– evaluation strategy, measure key indicators – performance monitoring produce annual reports – peer review publications

Gaps reflect incomplete data; Definitions: AIDS, Acquired Immune Deficiency Syndrome; ARV, antiretroviral; CAFOD, Catholic Overseas Development Agency; CB, community-based; CBO, community-based organization; CDC, Centers for Disease Control; CHW, community health worker; HBC, home-based care; HIV, human immunodeficiency virus; HTC, HIV testing and counselling; IGA, income generating activities; MSF, Medecins Sans Frontieres; MOH, Ministry of Health; NGO, non-governmental organization; OI, opportunistic infection; OVC, orphans and vulnerable children; PEPFAR, Presidents Emergency Plan for AIDS Relief; PLWHA, people living with HIV/AIDS; PMTCT, prevention of mother-to-child transmission; STI, sexually transmitted infection; TB, tuberculosis; VSO, Voluntary Services Overseas; UNICEF, United Nations Children Fund; USAID, United States Agency for International Development; WB, World Bank; WHO, World Health Organization.

Fig. 1 Potential program logic model for effective and sustainable CBC programming as informed by our presented taxonomy.