| Literature DB >> 23594416 |
Beth Rachlis1, Sumeet Sodhi, Barry Burciul, James Orbinski, Amy H Y Cheng, Donald Cole.
Abstract
Community-based care (CBC) can increase access to key services for people affected by HIV/AIDS through the mobilization of community interests and resources and their integration with formal health structures. Yet, the lack of a systematic framework for analysis of CBC focused on HIV/AIDS impedes our ability to understand and study CBC programs. We sought to develop taxonomy of CBC programs focused on HIV/AIDS in resource-limited settings in an effort to understand their key characteristics, uncover any gaps in programming, and highlight the potential roles they play. Our review aimed to systematically identify key CBC programs focused on HIV/AIDS in resource-limited settings. We used both bibliographic database searches (Medline, CINAHL, and EMBASE) for peer-reviewed literature and internet-based searches for gray literature. Our search terms were 'HIV' or 'AIDS' and 'community-based care' or 'CBC'. Two co-authors developed a descriptive taxonomy through an iterative, inductive process using the retrieved program information. We identified 21 CBC programs useful for developing taxonomy. Extensive variation was observed within each of the nine categories identified: region, vision, characteristics of target populations, program scope, program operations, funding models, human resources, sustainability, and monitoring and evaluation strategies. While additional research may still be needed to identify the conditions that lead to overall program success, our findings can help to inform our understanding of the various aspects of CBC programs and inform potential logic models for CBC programming in the context of HIV/AIDS in resource-limited settings. Importantly, the findings of the present study can be used to develop sustainable HIV/AIDS-service delivery programs in regions with health resource shortages.Entities:
Keywords: HIV; community-based care; resource-limited settings; review; taxonomy
Mesh:
Year: 2013 PMID: 23594416 PMCID: PMC3629264 DOI: 10.3402/gha.v6i0.20548
Source DB: PubMed Journal: Glob Health Action ISSN: 1654-9880 Impact factor: 2.640
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) |
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 | 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. | – Community | – Links and places donor funds with selected CBO | Donors include: | – Staff of 31 | – Board of Directors maintain organization focus and accountability | – Monitor and evaluate, identify assistance needs, quality assurance, set standards |
| Catholic Diocese in Ndola | Africa: Zambia | To operate on a non discrimination basis | – PLWHA, families, | – Home, community | – Provision of care incorporates community volunteers and integrated through local hospitals, partnerships with community resources to build capacity | – Coordinator, and nurses oversee community volunteers | – Linked to National AIDS Council Strategic Framework | – Program monitoring, reporting (on a half-yearly basis | |
| Centre for Positive Care | Africa: South Africa | To reduce the spread of STI, HIV/AIDS and improve the quality of life | – PLWHA, OVC, CBO staff | – Home, community | – Incorporates community leaders, community members trained as peer-educators | Donors include: | – Board of Directors-staff and local community members, including local magistrate | – Stipends and incentives for retention | – An evaluation was performed by Nelson Mandela Children's Fund |
| Chirumhanzu HBC project | Africa: Zimbabwe | To meet the needs of PLWHA and their families and to provide necessary info, skills, care, & support | – PLWHA, family members, caregivers | – Home, community | – Partnered with St. Theresa's Hospital with support from traditional healers, local chiefs | – Support from UNICEF | – HBC volunteers | – Volunteers receive monetary compensation | – Monthly review of HBC program |
| Dignitas International | Africa: Malawi | To increase prevention, treatment and care, develop and disseminate solutions that harness community solutions | – PLWHA, family members, community members, CHW, vulnerable populations (e.g. women, youth, soldiers, prisoners) | – Home, community | – Collaborates with Zomba Central Hospital, District Health Office, Christian Health Association of Malawi, public health researchers, academic institutions & Malawian health authorities | Donors include: | – Clinicians receive ongoing training through MOH | – Knowledge translation through operations research team | – Regular monitoring |
| Family AIDS Caring Trust (FACT) and Family, Orphans and Children Under Stress (FOCUS) | Africa: Zimbabwe, Mozambique | To be a renowned, result-focused quality program that facilitates sustainable programs on mitigation of the impacts of HIV/AIDS | – PLWHA, OVC, family members & caregivers | – Home, community | – Incorporates church life | Donors include: | – Recruits CHW, enlists church members | – Evaluation to highlight gaps and areas for improvement | |
| Hope Worldwide Siyawela Community Child Care | – Africa: South Africa | To respond to growing numbers of OVC | – Children, OVC, immediate families and caregivers | – Home, community | – Partnerships with microfinance institutions, microenterprise development organizations, victim support groups, VCT& PMTCT specialists & preschools and Perinatal HIV Research Unit | – Volunteers | – Trains volunteers in child care and HBC | – overall program strategy | – Conducting participatory research to identify specific needs within the community |
| Khutsong Centre and Heartbeat orphan programme | Africa: South Africa | To build trust | – PLWHA and their families | – Home | – Established by Carletonville AIDS Action Committee | Donors include: | – Team: nurse coordinator, social worker, orphan care workers, nurses and caregivers | – Care-givers visit child headed households on a regular basis | – Some M&E activities in annual Operational Report |
| Lusikisiki Clinic | Africa: South Africa | To deliver HIV care & services through decentralization, task shifting within services, training & mentoring staff, creating strong community support | – PLWHA | – Home, community | – Sub district reach | – Support through MSF | – ARV program run through nurses & CHW, supported through regular physician support (including mobile teams) and adherence counselors | – Clinic committee represents users with complaints, advocate for better infrastructure, drug supply | Monitoring and evaluation, quality control |
| Moretele Sunrise Hospice HBC | Africa: South Africa | – To address HIV/AIDS | – PLWHA, OVC, palliative patients, families | – home | – 27 health clinics and 78 villages within 120km | Donors include: | – Interdisciplinary team (palliative nurse, social worker, physician, pastor & psychologist) | – Community mobilization | – Conduct research |
| Reach Out Mbuya Parish HIV/AIDS Initiative | 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 | – home, community | – faith based community program focused on holistic model of care | Donors include: | – Executive Director and 8 member Board of Directors | – 5 year strategic plan | – department with Research Capacity and Capability Group |
| Scaling Up Through Expanded -Partnerships (STEPS) | 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 | – Village AIDS committees identify the vulnerable, then plan responses | Donors include: | – volunteers, teachers, community action groups mobilized | – develop subcommittees to build capacity (district, community and village level) | – manage, monitor & evaluate, accountable decision making process |
| Thandanani Children's Foundation | Africa: South Africa | To keep children in their own communities | – OVC, families | – home, community | – focus on advocacy & community mobilization | – Donors include: | – community residents, leaders, volunteers | – hold regular volunteer meetings | – monitor regularly |
| The AIDS Support Organization (TASO) | Africa: Uganda | – A world without AIDS | – PLWHA, families, communities | – home, community | – partnership with MOH & other stakeholders, provides opportunities for trainees from other parts of Africa area | Donors include: | – membership organization governed by Board of Trustees | – strategic plan to reinvigorate prevention strategies through enhanced partnerships local, national, and international | – client views incorporated to provide feedback |
| Tumelong Hospice and Lekegema Orphan Haven | Africa: South Africa | To let people die in peace | – PLWHA, most between 15–25, OVC and the communities where they live, grandparents, neighbors, and other orphan care givers | – home, community | part of larger Anglican mission (est. 1939) | – Donors include: | – run by team of 18 lay CHW | – regular meetings to provide mutual support | |
| Kapit Kamay Sa Bagong Pag-Asa | 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 | – 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) | Asia: Cambodia | To improve the lives of the poor | – PLWHA, migrant, squatter communities, children with disabilities, OVC, women | – home, community | – district level reach partner with local AIDS committee, numerous collaborators/partners including Veterans International, Center for Child Mental Health, TB center, Pasteur | – Donors include: | – volunteers | – plan to extend program | |
| HIV Equity Initiative/ Zanmi –Lasanti (ZL) | Central America: Haiti | To provide care and treatment for HIV/AIDS | – PLWHA | – community | – in 1998, ZL became world's first program to provide free, comprehensive HIV care and treatment | – Donors include: | – governed by Comite Executif | – compensation for volunteers, workers paid | – extensive evaluation & dissemination of findings (reports, peer-review journals) |
| Project Hope-Projecto Esperanca | 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 | – PLWHA, caregivers of OVC, families | – home, community | – slum in city | – Donors: | – sisters with support from local bishop | – incentives for unpaid staff include recreational activities, transport passes, month-long holidays | activity reports, monitoring |
| Men as Partners Program | 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 | – CHW and health care providers trained to provide workshops | – training manuals | – evaluation of pre- and post-workshops to determine change in attitudes | ||
| Pathfinder International | Global: 25 countries | – people everywhere should have the right and opportunity to live a healthy sexual and reproductive life | – PLWHA, orphans, youth | – home, community | – integrated HIV/AIDS care in early 1990's | Donors include: | – Board of Directors, President | – conduct studies to enhance program learning | – evaluation strategy, measure key indicators |
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. 1Potential program logic model for effective and sustainable CBC programming as informed by our presented taxonomy.