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Constance
Makhuduthamaga Umbrella
South Africa

The Problem

Sekhukhune District is one of the six districts in the Limpopo Province. It is one of the most under resourced districts characterized by high rates of poverty, poor infrastructure, lack of awareness and resources and high unemployment, 61.6 percent. It is estimated that over 30 percent of South Africans are infected with HIV/AIDS with concentrated populations in areas such as Sekhukhune. The above mentioned characteristics will continue to increase if people living with HIV/AIDS (PLWA) and other chronic diseases as well as their families do not get the proper care, support and education needed. The current situation in Sekhukhune District is that PLWA do not disclose their status and chronically ill patients do not take their medications as prescribed and often turn to traditional healers and faith healers. People are not sufficiently aware of their rights to access appropriate social services. Most people infected with HIV/AIDS are stigmatized and discriminated against and therefore do not seek help. Families go as far as hiding sick family members furthering their stigmatization. Before the implementation of the pilot program there were few support groups for PLWA or bereavement counselling for those who lost loved ones. Voluntary Counselling and Testing sites were underutilized as well.

Solution and Key Benefits

 What is the initiative about? (the solution)
The Sekhukhune District Integrated Community Palliative Care (SICPC) model supports a holistic/comprehensive approach to addressing the needs of its clients. The project’s aim is to capacitate all those involved including carers, nurses, social workers, religious leaders, traditional leaders, family members and others to meet clients’ needs through trainings and workshops, strengthening clients and their families as well as personal care and support materials. This was measured by the number of families who received these supplies. 4) Nurses educated carers on how to look after palliative clients and would often accompany them on home visits. This approached benefited both the nurses and carers and was measured by the number of carers who received education from the nurses. 5) A team approach was learned and emphasized. Weekly Integrated Care Team (ICT) meetings consisting of multiple sector coming together to discuss client care plans and challenges the carers were facing. This approach benefited the service providers and was measured by the number of meetings attended and the meeting minutes. 6) HIV/AIDS support groups were formed at the Marishane Clinic and Sekhukhune Care and Counseling Center. They benefited PLWA and they were measured by the number of support groups held and the number of clusters formulated in other clinics. 7) Traditional healers were trained in palliative care and in turn passed this knowledge onto other traditional healers in the community. Mixing traditional healing remedies and western medicine can have serious negative effects on patients and therefore, it is important for the traditional healers to understand the consequences of mixing the two. This approach benefited the traditional healers as well as the patients. This strategy was measured by the number of traditional healers trained and the number of trainings given.

current systems and service provisions, and incorporating all stakeholders in decisions affecting the clients. The following are key benefits resulting from the initiative: 1) The definition and idea of palliative care was brought to the attention of healthcare workers and community members. Prior to the initiative, many people were unaware of the support available for terminally ill patients. Now the patients are able to access the appropriate care. The impact of this education was measured by the number of healthcare workers who could appropriately identify palliative patients and the number of community members who were aware of the palliative care services. 2) Through home visits, home based carers were able to identify clients in need of palliative care and identify treatment defaulters and other social problems. Additionally, they gave health education talks to the client as well as the families taking caring of the patient. This was measured by the number of home visits and the number of patients identified. 3) Food parcels were supplied to palliative care

Actors and Stakeholders

 Who proposed the solution, who implemented it and who were the stakeholders?
The SICPC pilot project began in April 2006 at the request of the National Department of Health and Social Development. The Limpopo Provincial Department of Health and Social Development (DoHSD) selected Sekhukhune District, specifically Jane Furse and Marishane Village to pilot the project because these areas lacked a palliative care program. Makhuduthamaga Home/Community Based Care Umbrella (MK Umbrella) was chosen to oversee the project because the organizations directly implementing the program, Sekhukhune Care and Counseling Center and Good Hope Home Based Care, did not have the financial systems in place to manage the funding. Additionally, MK Umbrella was responsible for collecting data and month/quarterly reports for the funder, Family Health International (FHI). Other stakeholders not previously mentioned include Gateway Clinic, Marishane Clinic, ARV Clinic and the residents living in and around the project areas, specifically those effected/affected with HIV/AIDS, the chronically ill and their families.

(a) Strategies

 Describe how and when the initiative was implemented by answering these questions
 a.      What were the strategies used to implement the initiative? In no more than 500 words, provide a summary of the main objectives and strategies of the initiative, how they were established and by whom.
After DOH partnered with FHI and selected MK Umbrella to oversee the program, a development workshop was held in April of 2006 by WITS technical advisors for all the stakeholders involved. The purpose of the workshop was to develop an implementation plan for the project with goals, objectives, strategies and activities. The overall goal of the SICPC model was to improve the quality of life for PLWA and other chronic illnesses and their families in the Makhuduthamaga community. The main objectives were agreed upon and selected with key interventions, indicators, target dates and responsible groups. These objectives are as follows:
1. To implement a comprehensive community-based palliative care service with an integrated family centered approach.
2. To strengthen integration between the public health system and the community for provision of the comprehensive palliative care services.
3. To build the capacity of the service providers in the public health system and the community to provide palliative care.
4. To strengthen the ability of families to provide palliative care.
5. To enhance and support an enabling environment for SICPC

(b) Implementation

 b.      What were the key development and implementation steps and the chronology? No more than 500 words
In late 2005, the DoHSD identified a gap in Limpopo Province specifically that nowhere in the province was there a palliative care program. DoHSD then approached FHI, who was already working with WITS University, to help them implement a pilot program. FHI accepted the proposal and Sekhukhune District was chosen as the sight to pilot the program. Makhuduthamaga Umbrella was then chosen to take the lead role in overseeing it. In February of 2006 multidisciplinary meetings began to take place between the stakeholders, reporting tools were set out, objectives and indicators were developed, key implementation steps were devised such as training schedules and topics and budgets were set.

(c) Overcoming Obstacles

 c.      What were the main obstacles encountered? How were they overcome? No more than 500 words
The main obstacle in implementing and sustaining the project was a lack of leadership among key stakeholders. The Project Management Team (PMT) was established at the beginning of the project but meetings were held sporadically. This lack of motivation partly stemmed from lack of support, communication and interest from other stakeholders. There was not an open line of communication between the Project Advisory Committee (PAC) and PMT and therefore, each group was unaware of the expectations and activities of the other. There was never established a set of standard operating procedures for the committees or organization as a whole. Professionals were not regularly attending or holding ICT and PMT meetings. Leading organizations and funders did not provide crucial technical assistance and support.
Vital workshops such as integrated care plans, team building, communication skills, monitoring and evaluation (M & E) were never held in the beginning phases of the project. As for the trainings and information available, it was difficult to relay to the caregivers because it wasn’t in the local language. Additionally, transport costs to the workshops were never paid.

(d) Use of Resources

 d.      What resources were used for the initiative and what were its key benefits? In no more than 500 words, specify what were the financial, technical and human resources’ costs associated with this initiative. Describe how resources were mobilized
Family Health International and the Department of Health and Social Development are the primary funders for the program. FHI covers the human resource, administrative, equipment and travel costs for MK-Umbrella. The DoHSD funds all health care worker expenses including carer stipends. FHI is also responsible for training all those involved in the program, i.e. government, traditional healers, doctors, nurses, psychologists etc.

Sustainability and Transferability

  Is the initiative sustainable and transferable?
The initiative is being sustained financially through funding from FHI and DoHSD as stated in question 6. Other governmental departments are supporting the affected beneficiaries by providing social grants, funding self help projects such as gardens and other income generating projects, and providing housing through the Restructuring Development Program (RDP). In terms of cultural sensitivity, before implementing the project, the voice of the residents as well as traditional and religious leaders was incorporated into the planning of the project.
This project can be replicated in other communities by sharing the lessons learned as well as benchmarking from the pilot site. The government has been involved in this project; however FHI has been the primary funder for the pilot project. As other communities become aware of the benefits and cost-effectiveness of this community based approach, the government will be compelled to fund projects in these communities.

Lessons Learned

 What are the impact of your initiative and the lessons learned?
Buy in from all the stakeholders is imperative for the success of a palliative program. If one stakeholder does not follow through, a patient’s outcome may be altered for the worst. The palliative approach is dependent on the expertise of multiple sectors and therefore communication between all groups is crucial. Funding organizations and governmental departments need to take a strong leadership role and stay active with community partners. Consultative meetings e.g. Imbizos are important for planning and disseminating information. Communities as well as organizations need to be informed about palliative care and how it can benefit them. Training of carers and staff prior to the implementation and throughout the program is needed. The palliative care approach is a new approach for those directly implementing the program and therefore they need to be capacitated with the appropriate skills to be successful. Carers need to understand how they can incorporate the palliative care approach into their existing care plans. Strong leadership and foresight is needed to make these trainings successful.

Contact Information

Institution Name:   Makhuduthamaga Umbrella
Institution Type:   Government Agency  
Contact Person:   Thembi Farosi
Title:   Project Leader  
Telephone/ Fax:   013 265 1266
Institution's / Project's Website:  
E-mail:   mkhcumbrella@mail.ngo.za  
Address:  
Postal Code:  
City:  
State/Province:  
Country:   South Africa

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