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Executive Summary
Recognizing the complexity of implementing home and community based care (HCBC) programs and the scarcity of technical expertise in the Lesotho, USAID Regional HIV/AIDS Program (RHAP) and CARE Lesotho requested technical assistance from Family Health International (FHI) to conduct a rapid assessment of current HCBC activities supported by CARE Lesotho. HCBC is internationally defined as “Care and support that ensures meeting the medical, nursing and psychosocial needs of persons with chronic illnesses and their family members in their home environment”1. It is in the context of this technical assistance that this first visit was organized. The current report summarizes findings and recommendations from the visit.
Funding for CARE Lesotho’s pilot HCBC program is provided by the CORE Initiative, of which CARE International is a primary partner. A total of nine CBOs and FBOs are receiving small grants and support from CARE Lesotho to strengthen their HCBC activities. The HCBC activities are implemented under the umbrella of CARE Lesotho-South Africa’s Sexual Health and Rights Promotion (SHARP!) Program, a cross-border initiative.
SHARP!’s primary activities focus on prevention including recruitment and training of peer educators, management of community HIV/AIDS resource and information centers, and condom distribution. The HCBC component consists of a pilot program that provides small grants to nine community-based organizations (CBO) in Maseru and Leribe districts. This program, supported by two SHARP! site coordinators and the CARE Lesotho-South Africa HIV/AIDS Coordinator, was the focus of the appraisal.
Objectives and Methodology:
This rapid appraisal was conducted in collaboration with the CARE site coordinators over a five day period and had the following objectives:
- Rapid assessment of progress made in the implementation of the site activity
- Identify strengths and weaknesses of the program
- Provide feedback to the site
- Provide recommendations including potential technical assistance needs for the site
Specifically the following areas were explored:
- HCBC volunteers capacity (including training)
- HCBC services (scope, type of care and coverage)
- Perception of HCBC by clients, families, and partner services
- Referral systems and linkages for clients and families for other care and support needs
- Sustainability
- Integration with National Palliative Care and HCBC activities
Due to the limited amount of time for the rapid appraisal two HCBC sites, one in Leribe district and one in Maseru district at Ha Thamae, were chosen as by CARE staff as best representing the general status of all sites in each geographic location. Methods of appraisal included direct observation, review of relevant documents, interviews and discussions with the CARE Lesotho-South Africa HIV/AIDS Coordinator and CARE Lesotho-South Africa SHARP! Site Coordinators, informal focus group discussions with the HCBC providers, interviews and discussions with referral clinics, the Ministry of Health and Social Welfare (MOHSW), the Lesotho Senate AIDS Committee and interviews with HCBC clients. A site visit was made to Mekaling, Mohales Hoek where no formal support is being provided for HCBC to explore similarities and differences. A total of 76 people were interviewed through key informant interviews and informal focus group discussions2. All work was conducted in the local language Sesotho.
Country Needs for Home and Community Based Care
The impact of HIV/AIDS epidemic in Lesotho is one of the most severe worldwide. There are two types of people in Lesotho; those infected and those affected by HIV/AIDS. In 2001 it was estimated that 31% of Basotho3 adults age 15-49 were living with HIV and 8,200 children were living with the virus4. Almost half (49%) of women presenting at ante-natal clinics in Maseru-the capital are living with HIV/AIDS. The average life expectancy in Lesotho has dropped to only 36 years for children born today5. Currently 1 in 5 Basotho children under the age of 15 have lost one or both of their parents with close to three quarters of them due to AIDS and the prediction is that by 2010, one in every four children will be an orphan6.
The primary factors contributing to the high HIV rates in Lesotho include internal and external migration, poverty, lack of HIV/AIDS related services and a lack of the provision of technical assistance and resources to combat the HIV epidemic. Of the limited existing HIV/AIDS services the majority are concentrated in urban areas primarily in Maseru, the capital, followed by other prominent district towns. However, the majority of Basotho, approximately 80% live in rural areas.
National and District Level Overview
The structures charged with delivering HCBC in Lesotho are spread across several sectors and levels of government and NGOs operating in the country. Although Lesotho has several government and multi-stakeholder units coordinating HCBC activities, including the MOHSW and Lesotho AIDS Programme Coordinating Authority (LAPCA), the country does not have a unified coordinating body, strategy or policy on provision of HCBC. Hence there is fragmentation and a lack of coordination at the National level.
Each district has a District AIDS Task Force (DATF) that is parts of LAPCA structure. DATFs comprise representatives of local government bodies, NGOs, community-based organizations, local chiefs, police and nursing officials. Each DATF is responsible for coordinating all HIV/AIDS activities within their respective districts and have their own work plans and small budgets. HCBC is a primary element of DATF’s work. Both DATFs reviewed as part of this rapid appraisal indicated provide limited HCBC kits, assist with HCBC trainings but indicate a strong need for assistance to improve coverage, quality, and monitoring of their work.
CARE site coordinators are members of DATFs in their districts and are considered extremely valuable by the District AIDS Coordinators who are responsible for the DATFs. The task forces also consider CARE’s work critical to HCBC through for example its complementary coverage, assistance with trainings, and participation in the DATFs.
Community Overview
Traditional culture and customs in Lesotho are very supportive and sensitive to the need for home and community based care. This tradition is what CARE Lesotho’s HCBC pilot is built on. Despite the HCBC workers’ limited resources they collectively provide approximately 800 home visits per month and use their own very limited resources to care, feed and support ill people in their communities. Community assistance comes from many informal groups, including traditional savings groups, burial societies, church groups, etc.
The motivation to share comes from traditional values, pride, spiritual beliefs and dependency of one another within communities. The relationship between HCBC workers and clients is that of mutual respect; in fact, for instance all interviewed HCBC workers stated they felt being invited to help was a necessary condition of their assistance, and that they would not offer assistance uninvited. There is also no distinction between AIDS and other illnesses in terms of providing HCBC.
Observations and Recommendations
Lesotho’s culture and values embraced by its communities is undoubtedly an asset in HCBC. CARE Lesotho has made a notable effort in providing trainings, funding and on-going support to the HCBC groups. Support has been provided on an informal basis for more than one year. Financial support to the CBOs and FBOs started approximately 2 months prior to the rapid appraisal. However the community members efforts, commitment and willingness to share and the support provided by CARE cannot provide enough assistance to the sick without an increase in funding, solid technical, logistical and material base. To fully leverage their innate motivation to help, CARE Lesotho needs additional funding and technical up grading to adequately support the HCBC workers. The lack of funding, human capacity and assistance at the district DATF, CBO and NGO level further handicap the outreach and coverage of HCBC in Lesotho.
Although CARE arranged for several training sessions on HCBC, there is a need to implement an on-going support and education strategy for the HCBC workers. Both the HCBC workers and local clinic staff indicate the need for training in areas such as communication skills, care of children, nutrition and special needs of PLWHA. Additionally, many more village healthcare workers are ready to be trained and to become active providers of HCBC allowing for an increase in coverage of care.
Monitoring and evaluation represent a sizable gap in the HCBC care coverage. There is no systematic approach for assessing and monitoring HCBC care provided in the community. The provision of follow-up and ongoing support to HCBC workers remains a challenge. Some informal systems, like ad hoc record keeping by HCBC workers, do exist, but they need to be upgraded.
On a practical level, there is a need to up-grade the content and supply of the HCBC kits. The HCBC kits are central to the HCBC providers’ work providing much-needed materials, confidence and ability to provide better care to their clients. There is also a need for low-literacy education materials that are currently not available in the field.
Lesotho’s people and their willingness to help the sick are tremendously important assets in the fight to mitigate the impact of HIV/AIDS and its consequences. Traditional values, customs, and practices secure the foundation needed for the sustainability of HCBC. However, if the care provided is not backed up by considerable technical assistance, funding, training and human capacity-building, the Basotho will not be able to benefit from quality care and provide care to the majority of the population in need.
Footnotes:
- Family Health International, Comprehensive Care and Support Framework
- See Appendix 2 for breakdown of people interviewed
- Basotho is the term used to refer to the people of Lesotho
- UNAIDS
- UNICEF
- Children on the Brink 2002 UNAIDS and USAID
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