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Report on the determination of the feasibility of establishing a Palliative Care Centre in Vhembe District (South Africa) EXECUTIVE SUMMARY The report presents the findings of a study commissioned by Liz Homes Hospices region to determine the feasibility of establishing a Palliative Care Centre (PCC) in Vhembe district, Limpopo province, South Africa. Key findings The main findings of the study are as follows: 1) There is a dire need for palliative care and support centre in the region because of the following factors: There are higher incidents of individuals requiring palliative care. The hospital system is unable to carry the services of palliative care since effectively and to the satisfaction of the communities. Most palliative services are conducted by Home based carers on a voluntary basis. Although home based carers in the region receives training, it is usually adhoc and thus the impact is often not measurable. Palliative care givers themselves require continuous training, in-service training and support of a holistic nature. Currently they do not have a base for such support in the region. Limpopo, and Vhembe is a gateway for Zimbabwe, Mozambique, Botswana, Swaziland and the rest of Southern Africa and Africa. The establishment of a palliative care centre in the region will cater for the palliative care needs of emigrants from the rest of SADC. The training and support needs extend beyond CHBC programmes to include care givers in homes and family 2) There are more than 50 CHBC organisations in Vhembe district, all of which render palliative care, however none of these receive focused palliative care training and support. Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 1 3) Palliative care training and support centre requires a comprehensive multidisciplinary approach, and thus there will be a need for robust mobilization and advocacy and collaboration with the community, government and Hospitals and clinics. Recommendations It is recommended that a palliative care, training and support centre be establish to cater for palliative care needs on individuals and CHBC programmes in the Southern African region. palliative care curriculum be developed as informed by stakeholders such as CHBC programmes, health professional, etc. Such curriculum should address the holistic needs of home based carers. Opportunities to register and certificate the training through compliance with relevant bodies such as SAQA should be explored. Although the centre may be established in phases, it should cater for holistic, multidisciplinary needs of the carers and the clients. Palliative care centre cannot be successful unless supported by government and communities. Palliative care advocacy drive should be put in place for community mobilization and ownership. In addition, although the landscape of palliative care is not very clear in the SADC region, pockets of good practice care and support centers are available that the rest of the continent can learn from. A benchmarking visit to selected centers is recommended in this regard. Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 2 BACKGROUND Limpopo is the northernmost province of South Africa, having Southern regional borders with Botswana, Mozambique and Zimbabwe. For example, Musina in Musina local municipality is a small town on the northern border of South Africa in the Province of Limpopo, barely 20kms from the Zimbabwe. Vhembe district in one of the five district in Limpopo province is a population capacity of 1,336,493 (Statistics SA, 2010). Vhembe consists of four local municipalities which include Musina, Mutale, Thulamela and Makhado. The Vhembe district offices are based in Thohoyandou. The southern border of the province neighbours on Gauteng, Mpumalanga and North West, making Vhembe district is the gateway for the Southern Africa region. Musina continues to be a recipient of mainly Zimbabwean and largely undocumented migrants and it is the intended destination for many (23%), second only to Johannesburg (28%). Even those in possession of asylum and work permits choose to remain nearby, in order to be close to home and simply unable to move along to other destinations due to poverty. The process of migration is fraught with dangers and difficulties, opening people to incredible risk, health problems and ongoing hardship. The deterioration in health following this migration pattern is apparent. Access to good nutrition, proper medical care, and sanitary living conditions are important components of overall health and well-being. And yet all these components are lacking upon arrival in South Africa. Respondents were living, bathing, cooking, and sleeping in the outdoors. However, many of those who needed medical attention reported seeking and receiving assistance. The living conditions remain largely unchanged adding to the possibility of long-term health problems and barriers such as lack of knowledge about health care, rights of migrants, and fear of deportation have the potential to keep many from getting the help they need. Employment, an essential factor influencing migrants desire to come to South Africa, is continuously thwarted through irregular, temporary and piece work employment. Almost everyone we interviewed wanted to be economically viable in order to support family members back home. Being unable to connect with employment and robbed and/or depleted of financial resources, many migrants become and are reliant on the support of community-based organizations, faith based organizations and NGO’s. They rely on these organizations to provide shelter, food, healthcare and other forms of support. And yet still, many migrants are not able to live up to any basic standard. Shelter is limited and unsuitable for the needs of many vulnerable groups. Food is sourced through donations or begged for through family and friendship connections. Water is Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 3 collected and food is prepared near toilets and ablution facilities, and many more are sleeping out in the open. Such an environment leads to increased health problems such as general aches and pains to more serious illnesses such as chronic diarrhea and tuberculosis. Health care is available and migrants are making use of the health care facilities in Musina. However, there is continued reliance on NGOs to provide these services as most migrants believe mobile clinics provide health care free of charge and without fear of arrest. Barriers to services at public hospitals remain as people again fear deportation if they access any ‘official’ government services. The elements outlined above are especially problematic in the lives of women and children. While violence was directed almost equally at men and women, gender based violence has continued impacts on the lives of survivors. From the stories collected through the survey, the migration process can be incredibly traumatic, with women and children sexually assaulted and feeling very isolated in the host country. Shelters are at capacity and the only other option available for shelter is in the open, often at the Showground, in unsanitary conditions. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual (WHO, 2002). According to the resent study conducted by Moetlo et al., (2011), Community Home-Based Caregivers (CHBC) are largely able to implement home-based care services but would need more support (training, financial, career structure, and health system) to improve on their services. There are more than 50 CHBC organisations in Vhembe district, all of which render palliative care, however none of these receive focused palliative care training and support. Limpopo province has a population of more than 5 million. There is a network of palliative care learning centers to educate hospice workers in the region however they are mostly in urban areas. The nurse-patient ratio for all of Southern Africa is about 443:1. For example, in Limpopo the ratio is about 700:1. (South African Nursing Council (SANC), 2010). With such a high nurse to population ratio the countries rely heavily on community workers for many health care services, including palliative care. THE CONTEXT/SCOPE Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 4 The shortage of healthcare professionals working alongside CHBC programs stems from the root problem of a shortage of healthcare professionals across the board in the health infrastructure. Therefore, this challenge is of greater magnitude, not unique to CHBC and Palliative care programs and cannot be properly addressed within the scope of this study. There is a need for CHBC to be given more information on their operations on how they are carried out, and who carries this operation out. According to the 2006/2007 Annual Report of the Department of Health and Social Welfare of the Republic of South Africa (RSA), there were 4,300 reported cases of different types of cancers in the country. Of these, 4000 were reported to be malignant conditions found among women with cancer of the breast being the most prevalent. The National Cancer Registry (NCR) contains South African cancer statistics and plays a vital role in maintaining and developing national and international awareness of the enormous problem of cancer in the South African population. Cancer is one of the major killers throughout both the developed and developing world, including South Africa. According to the 2009/2010 Annual Report of the Department of Health and Social Welfare of the Republic of South Africa (RSA), there were twenty nine thousands (29,000) reported cases of different types of cancers in the country. Of these, 28,700 were reported to be malignant conditions found among men and women with cancer of the breast being the most prevalent (Denny 2009:214). Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS and other life-threatening illness because of the variety of symptoms they can experience. Palliative care is an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic. People living with life-threatening diseases have challenges especially if they are parent and bread winners, because they won’t work during their illness and they can’t support their children. It becomes a challenge. Palliative care services are designed to ease situations such as this. PCC will help to enhance community health services. Especially for patients who are living in their homes, palliative care is the best service to improve their quality of life. Serious illness can cause physical symptoms, such as pain, nausea or fatigue. One may have psychological symptoms like depression or anxiety. The treatments for your disease may cause symptoms or side effects. Palliative care relieves symptoms without curing them. Where there is no social worker, a home-based caregiver might help with practical matters and together with the client plan to meet these. Conversations between clients and palliative care Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 5 and legal staff should be on an equal basis, where power is shared and the expertise of the client recognized. Health workers can provide basic medical and psychological support including necessary drugs to control pain and other symptoms that occur as a result of HIV related disease. Family and community caregivers can also provide palliative care. For example, when patients choose to be at home, caregivers can be trained by health workers to effectively provide the prescribed medications and other physical and psychological support that may be needed. Friends, relatives and others in the community can be trained to ensure that the patient is comfortable. Medical attention from health facility workers (home visits to support the patient and to assist the caregiver) should be available as needed. Families and friends should be provided support even after the death of the patient. Bereavement counselling is an opportunity to support the loss of affected loved ones and to consider future plans. Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS because of the variety of symptoms they can experience - such as pain, diarrhoea, cough, and shortness of breath, nausea, weakness, fatigue, fever, and confusion. Palliative care is an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic. Palliative care is an area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care,palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness. Palliative care is an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems Palliative care: • Provides relief from pain and other distressing symptoms; • Affirms life and regards dying as a normal process; • Intends neither to hasten nor postpone death; Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 6 • Integrates the psychological and spiritual aspects of patient care; • Offers a support system to help patients live as actively as possible until death; • Offers a support system to help the family cope during the patient’s illness and in their own bereavement; • Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • Will enhance quality of life, and may also positively influence the course of illness; A lack of palliative care support and training centres results in untreated symptoms that hamper an individual’s ability to continue his or her activities of daily life. At the community level, lack of palliative care places an unnecessary burden on family, hospital or clinic resources. RESEARCH METHODOLOGY The key methods/instruments include: Collection of qualitative data from stakeholder Community Home Based Carer, health professionals, community leaders and individual citizens in the Limpopo province. Assessments of training and support needs of HBC in the region This study was relying on a systematic review of online resources. A questionnaire was distributed to NPO group. Because of limited time, only three participants from our NPO database responded to the questionnaire. The key question was, describe if there is a need to establish a palliative care centre in Vhembe district? Participants were requested to mention at least two reasons. A qualitative paradigm was adopted for this study. Polit and Beck 2006:212 as well as Stommel and Wills (2004:442) defined qualitative research as research that focuses on interpretive, nonnumerical, narrative interpretations, and does not emphasis’ quantitative measurements at all. This study required a rich and in-depth understanding of the PALLIATIVE CARE issues in the region. Qualitative research aims at describing social phenomena and behaviours using rich contextual data that emphasise the subjective experience of social actors (Malta, Maya, Clair, Freitas & Bastos 2005:1426). Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 7 Unstructured interviews were conducted to establish what stakeholders say about the need for establishing a palliative care centre in the region. Stakeholders included a group of 12 home based carers, 2 nurses, 6 NGOs, 17 community leaders. Stommel and Wills (2004:445) defined an unstructured interview as an interview style in which the flow and content of the interviews are largely determined by the interactions between interviewer and interviewees. Such exploratory interviews do not contain fixed response formats or predetermined questions, except for directions concerning the general topic areas. Polit and Beck (2004:229) view the unstructured interview as “…typical conversational, with no preconceived view of the content or flow of information to be gathered”. RESULTS The results are presented according to identified objective indicated in the terms of reference. a) The viability of having a palliative care centre in Vhembe District Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS because of the variety of symptoms they can experience - such as pain, diarrhoea, cough, and shortness of breath, nausea, weakness, fatigue, fever, and confusion. Palliative care is an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic. Lack of palliative care results in untreated symptoms that hamper an individual’s ability to continue his or her activities of daily life. At the community level, lack of palliative care places an unnecessary burden on family, hospital or clinic resources. b) Why do we need Palliative Care training and Support centre in the community? According to Wits Palliative Care (WPC) at least 370,290 people suffered a painful death in 2005. Up to date, the statistics are believed to have increased. Therefore there is a need for palliative care centre that will help with reduce the burden and crisis. Kang’ethe (2010) stressed about the danger of involving children as family caregivers of palliative home-base-care to advance HIV/AIDS patients. In 1996, the new Constitution was adopted for the country. According to Clause 27.1 of the Constitution, “everyone has the right to have access to: health care services, including Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 8 reproductive health; Sufficient food and water; and social security, including, if they are unable to support themselves and their dependants, appropriate social support”. Palliative centre is crucial in Vhembe district. Palliative Care in Vhembe district is a necessity. According to Lobuono (2001:44), the period following the diagnosis of cancer turns out to be the time when life and death predominates. It is a crisis which emphasises the patient’s mortality. The diagnosis of cancer according to Watson (2003:804); and Keitel & Kopala (2000:308) forces the individual into a series of crises that affect his or her entire well-being by fear, guilt and powerlessness. A USA study of patients who had cancer and mastectomy, reports that the cancer experience had a disruptive influence on family relationships (Lobuono (2001:319). This is further compounded by separation introduced by hospitalization, physical and psychological withdrawal on the part of the patient. Lobuono (2001:223) further states that family members had difficulties in coping with the emotional ramifications of cancer. The most difficult and crucial time arises when the patient is waiting for the results of the biopsy and after the mastectomy. This also makes patient and the spouse very scared when they take a look at the scar or incision for the first time. Of greater importance is the time when the couple resolves to resume physical intimacy and accept the changes brought by the surgery (Haskel 1995:275). Findings of the 2011 study by Manenzhe, Netshikweta and Netshandama (2011:84) shows those patients with cancer travel kilometers for their monthly. The researcher found that there is a lack of information on breast cancer and mastectomy among African women residing in Vhembe district. No previous research has been conducted to determine how these women experience the diagnosis of cancer of the breast and subsequently the mastectomy. Of greater importance is the fact that women diagnosed with cancer of the breast reported changes in the affected breast long after the disease had spread to the nearby lymph nodes. Finally, the support from the family system may be not readily available when crucially needed. Following the research study conducted in Vhembe district by Manenzhe et al (2011:50), an affiliation of committed individuals from the University of Venda Department of Advanced Nursing Science, met to coordinate educational events on a regional basis for the palliative care community. Such events included visits by the researchers as well as the encouragement on the oncology nurses (experts) to form a place where cancers patients and the survivors with be supported from. Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 9 Dealing with distress The key to effective palliative care is to provide a safe way for the individual to address their physical and psychological distress, that is to say their total suffering, a concept first thought up by Cicely Saunders, and now widely used, for instance by authors like Twycross or Woodruff. Dealing with total suffering involves a broad range of concerns, starting with treating physical symptoms such as pain, nausea and breathlessness. The palliative care teams have become very skillful in prescribing drugs for physical symptoms, and have been instrumental in showing how drugs such as morphine can be used safely while maintaining a patient's full faculties and function. However, when a patient exhibits a physiological symptom, there are often psychological, social, or spiritual symptoms as well. Haskel (1995:20) also refers to it as the “existential plight”. The struggle and stress that presents, when the diagnosis of cancer is confirmed, brings awareness of personal mortality. Thus the newly diagnosed patient with cancer is often confronted with his/her own humanity and mortality, and this becomes a period of despair. Keitel & Kopala (2000:15) concurs that when a member of the family suffers from a life – threatening disease such as cancer, the effects are not only experienced by patients, but rather they reverberate throughout the family system and the patient, all experience the cancer crisis. ‘Yes there is a need for a palliative care in our region because of high rate of HIV/AIDS and TB in our region. I think we need that for relief of pain, symptoms and stress’. Said participant, during one of the interview. The interdisciplinary team, which often includes a social worker or a counselor and a chaplain, can play a role in helping the patient and family cope globally with these symptoms, rather than depending on the medical/pharmacological interventions alone. Usually, a palliative care patient's concerns are pain, fears about the future, loss of independence, worries about their family, and feeling like a burden. While some patients will want to discuss psychological or spiritual concerns and some will not, it is fundamentally important to assess each individual and their partners and families need for this type of support. Denying an individual and their support system an Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 10 opportunity to explore psychological or spiritual concerns is just as harmful as forcing them to deal with issues they either don't have or choose not to deal with. According to Leseka (2010), findings reveal that Hospital-based palliative-care has limited effectiveness due to the small size of the team which is working against demands from increasing numbers of patients. Very few patients (27%) with HIV&AIDS were accessing services of the hospital-based palliative care. Significant proportion (67%-77%) of HIV infected patients were experiencing physical symptoms, pain and psychosocial problems requiring palliative care interventions. This means that CHBC palliative care is more effective compared to the HospitalBased palliative care. In CHBC palliative care centers the size of a team is large, but mostly lacking expected capabilities such as required training and available facilities. When patients choose to stay at home, caregivers can be trained by health workers to effectively provide the prescribed medications and other physical and psychological support that may be needed. Friends, relatives and others in the community can be trained to ensure that the patient is comfortable. Medical attention from health facility workers should be available as needed. Friends and families should be provided support even after the death of the patient. Bereavement counseling is an opportunity to support the loss of affected loved ones and to consider future plans (WHO). c) Training centers: Training needs of CHBC to care for palliative care clients in the area There is a greater need for palliative caregivers to receive required training that will improve and enhance their service delivery. Although the majority of members of CHBC in Vhembe district of Limpopo have enough knowledge on what they are doing there is greater need for continuous training and in-service training (Moetlo et al, 2011). Within the concept of integrated community home-based care (CHBC) services 393 caregivers in Vhembe District, Limpopo Province, South Africa responded to a questionnaire on various aspects of home-based care and service provider characteristics. Results indicate that in most areas of the Community Homes-based Care (CHBC) services, caregivers had skills confidence including wound dressing, health education, bet bathing, giving prescribed medication, and management of diabetes client, and they had sufficient knowledge received through training. Lower knowledge and confidence was noted for the Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 11 management of hypertensive and asthmatic clients, and lower knowledge (82%) was indicated for counseling. The most common caregiving services included health education (100%), giving medication (98%), management of hypertension (22%), and counseling (15%). Most caregivers rated the implementation of CHBC in their district as excellent or good (70%). The most common problems and barriers in caregiving included (1) structural problems: none or sometimes not available home-based care kits (54%), lack of resources (32%), lack of transport money (30%), and very low stipend (22%); (2) problems with the supervisor such as lack of management skills (40%) and selfishness (38%); and (3) problems with clients and community such as patients not taking prescribed medicines regularly (45%) and not welcomed by patients and family members (35%). Community home-based caregivers are largely able to implement home-based care services but would need more support (training, financial, career structure, and health system) to improve on their services. d) Training needs of Community Home Based Carer to care for palliative care The most common problems and barriers in care giving included, structural problems: none or sometimes not available home-based care kits, lack of resources, lack of transport money, and very low stipend; problems with the supervisor such as ‘lack of management skills’ and ‘selfishness’; and problems with clients and community such as ‘patients not taking prescribed medicines regularly’ and ‘not welcomed by patients and family members’ (Moetlo et al., 2011). According to the study by Moetlo et al., (2011), results of their study indicate that in most areas of the CHBC services, caregivers had confidence including wound dressing, health education, bet bathing, giving prescribed medication, and management of diabetes client, and they had sufficient knowledge received through training. It is very important to give required training to care givers in order for them to care for palliative care clients. There is a greater need for training to produce qualified palliative care givers to avoid a situation where children are involved. The burden and crisis such as children been involved will results in them been absent from school while caring for patients especially if patients are family or parents. Kang’ethe’s study reveals that children often face serious problems which include being oppressed, being engulfed by fear and denied rights through care giving; being emotionally and psychologically overwhelmed and being at risk Palliative care report [Draft 1] Professor Netshikweta of contracting HIV/AIDS. On his 20 March 2012 Page 12 recommendations, Kang’ethe said that fostering realization that relying on child care giving is a negative score in fulfilling Global Millennium Development Goals (MDGs). Palliative care training and support centre (PCTSC) is needed to serve as a training centre. Palliative carers faces challenges which need serious training to handling stress, conflicts, discouragements and for motivating them. In 2006 Hospice Palliative Care Association (HPCA) of South Africa conducted a brief survey exploring challenges and barriers to non supervised care giving by less formally trained palliative care personnel as well supervision and mentorship skills of professional nurses. According to Moetlo et al, (2011), there is pervasive limitation throughout the research, with emphasis on the lack of management skills by supervisors, the lack of sharing of updated information, and the extreme selfishness. The training should include: Identify the care and support needs experienced by HIV positive patients. Palliative care needs to provide for patients in CHBC. Bereavement Support Care Short Course in Palliative Nursing Care Psychosocial Palliative Care training Palliative care symptom management Stress and conflict management Professional supervision Amongst key areas of training gaps identified above, there is a need for training on technical expertise that is necessary for improved programme delivery and expansion, which are also important factors to consider. Furthermore, 'Very often when people talk about care workers in the SADC region they talk about nurses, doctors and other people employed at health facilities. 'They do not talk about people providing care in the shadows: home-based caregivers like mothers, wives, sisters, grandmothers, grand children and others looking after people living with HIV, one stakeholder indicated. With approximately two in five of all people infected with HIV globally in the past few years, Southern Africa is now regarded the epicenter of the global HIV pandemic. Experts say HIV and AIDS disproportionately affects women and girls, who also form the overwhelming majority of people providing care and support to people infected and affected by the pandemic. Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 13 Loosely defined, care workers are people who help the sick or infirm. The majority of care workers in Southern Africa provide home-based care for people living with HIV, often without being paid. Caregivers may be close family members such as children, wives or sisters socially or culturally expected to nurse the sick, or may be associated with organizations (such as NGOs) or linked to government-run health facilities. Thus the establishment of a palliative care centre will benefit carers within and beyond of the primary health care programme and Community Home based care programmes. e) Common pathologies in the region using Vhembe district as a case setting. The HIV and AIDS prevalence in the region as well as tuberculosis dominate the palliative care pathologies in the region. Furthermore, the incidences of diabetes, hypertension and other non communicable disease are found to be the leading pathologies in palliative care. Statistically, the leading five male cancers in South Africa in 2009 according to the NCR Report shows that males have a lifetime risk (LR) of 1 in 6 of cancers predominating : Prostate 1 in 23 Lung 1 in 69 Oesophagus 1 in 82 Colon/rectum 1 in 97 Bladder 1 in 108 Leading five female cancers in all the provinces of the Republic of South Africa (RSA) in 2009 according to the NCR Report shows that women have a lifetime risk (LR) of 1 in 8 of getting cancer, as opposed to 1 in 6 in the previous report, with the following cancers predominating: Breast 1 in 29 Cervix 1 in 35 Uterus 1 in 144 Colorectal 1 in 162 Oesophageal 1 in 196 Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 14 f) The existence of Palliative care centres in the region Currently in Vhembe district, there are quite a number of CHBC. In situations were inadequate provision of psychosocial and spiritual support for HIV/AIDS patients is compromised due to lack of comprehensive and integrated holistic care, the quality of life of patients is threatened (Leseka, 2010). Lack of palliative care result in untreated symptoms that hamper an individual’s ability to continue his/her daily-life activities. At a community level, lack of palliative care places an unnecessary burden on hospital or clinic resources. The university of Venda collaborates with the following NPO’s that have integrated with palliative care program in Vhembe region: a) Far North Community Care Development (FNCCD) based in Thohoyandou block. b) Mapate HIV/AIDS Project c) Munna ndi nnyi d) Litshani Vhana Vhade Foundation (LVVDF) based in Thohoyandou, Vhembe district. e) Centre for Positive Care (CPC) based in Sibasa, Vhembe district. f) Mashau Home Base Care (MHBC) based in Mashau, Vhembe district. g) Thogomelo OVC Caregiver Support and Child Protection Training The following is a brief synopsis of what selected NGOs does in line with palliative care in the region. i) Far North Health Care Centre This organisation is located in Thohoyandou and serves eight villages in the Vhembe District Municipality. Its programmes include home-based care, referrals to health facilities, and facilitation of access to treatment such as antiretroviral therapy, family health education and training, counselling and food security. The organisation operates two community-care centers that provide a range of services including psychosocial support and recreational activities for OVC. The AFSA funding grant was used to support the community-care centre. ii) Mapate HIV/AIDS Project This organisation operates in three villages of Thulamela Local Municipality. It targets vulnerable populations, in particular OVC, the sick, the aged and the disabled. The organisation operates Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 15 three community-care and support centers and a number of poverty alleviation projects. The grant from AFSA was used to support the OVC programme in the community centers. iii) Munna Ndi Nnyi – Based in Shayandima in Limpopo, Munna Ndi Nnyi aims to educate initiation schools about the sexual health of the initiates. The initiation school programme focuses on issues of hygiene, safety and education. Supported by the AFSA grant, the programme provides peer education for the initiates and works with parents to help them make informed decisions – including the choice between ritual and medical circumcision and provides appropriate sanitation facilities and hygienic surgical instruments. iv) Thogomelo OVC Caregiver Support and Child Protection Training The project is funded by the US Agency for International Development, in partnership with the Program for Appropriate Technology in Health (Path) as the prime contractor, HDA and The International HIV and AIDS Alliance. The aim of the project was to develop training materials for supporting the caregivers of vulnerable children in the 9 provinces and to promote sustainability and scale up deliverables. The programme seeks to build the capacity of provincial training service providers to deliver training as well as undertake assessment and moderation of learners in line with the requirements of the Health and Welfare SETA. To date the project has developed a skills development programme addressing the psychosocial wellbeing and support for of community caregivers at levels 1 and 2 of the National Qualifications Framework (NQF). The training incorporates two modules on developing appropriate skills in child protection. During Year 2 a second curriculum offering more advanced child protection skills to the supervisors of community caregivers will be piloted (levels 3 and 4 of the NQF). A further curriculum offering Psychosocial Support Skills for supervisors is in the planning stages. The project has developed a Good Practice Case Study on developing accredited curricula to share the lessons it has learnt in this process. Further Good Practice Case Studies will be developed and disseminated through a seminar series in Year Two. Furthermore, based on the fact that many children, including orphans, are dying of AIDS, without appropriate palliative care, Centre for Positive Care (CPC) Non Profit Organization (NPO) in Vhembe district of Limpopo, has received a funding from the Nelson Mandela Children’s Fund (NMCF), through the Goelama Programme since 2002, to support orphans and vulnerable children (Rendall-Mkosi & Phohole, 2005). According to press release 2010, Mashau Home Base Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 16 Care (MHBC) in Vhembe district of Limpopo has caregivers who provide palliative care for bedridden patients. MHBC received a funding of about $11,000. Many NPOs have palliative care clients but do not have a program and resources to carry out. Most of these palliative caregivers are taking care of patients suffering from chronic diseases. “We have palliative care, but we do not have a program for it. We only offer palliative care for patients suffering chronic diseases through our Home-based care programs” said one of the managers for one of the NGO that has integrated palliative care in their everyday activities. In addition, although the landscape of palliative care is not very clear in the SADC region, pockets of good practice care and support centers are available that the rest of the continent can learn from. CONCLUSION AND RECOMMENDATIONS There is a need for the establishment of Palliative Care Centre in Vhembe to identify and some of the problems within the district on community which would deal with counselling, health education, management of hypertension and other field which might be identified when we visits community based care in the Vhembe District. In low HIV seroprevalence countries palliative care may be a routine part of hospital and clinic care. In countries with a high burden of HIV infection, palliative care should be part of a comprehensive care and support package, which can be provided in hospitals and clinics or at home by caregivers and relatives. In many settings, HIV infected people prefer to receive care at home. The provision of palliative care can be augmented significantly by the involvement of family and community caregivers. A mix of psychosocial support, traditional or local remedies, and medicines can be combined to provide palliative care that surpasses that found in many overcrowded or poorly staffed hospitals. Wherever palliative care is provided, factors to be assessed include affordability and the presence of community care and support services. Developing guidelines and training for palliative care should be specifically included in national guidelines for the clinical management of HIV/AIDS. Training on the provision of palliative care should be incorporated into the curriculum for all health Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 17 care providers. Guidelines for home care services should include basic management of palliative care by family members and community volunteers. Training courses for family members and community volunteers can be organised and provided by health care workers at the community level. Palliative care is an important health phenomenon that improves the life of seriously ill patients. It is important to note that palliative care does not cure the illness, but it support and care, improving the quality of life of the patient. Amongst others, Bereavement Support Care is an important tool for palliative care. Monitoring and evaluations programs should be implemented from the first stage of establishing the palliative care centre. 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Washington DC: World Bank. ADDENDUM LIST OF ACRONYMS AND ABBREVIATIONS CHBC- Community Home-Based Caregivers PCC- Palliative Care Centre WPC- Wits Palliative Care CPC- Centre for Positive Care Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 33 NPO- Non Profit Organization NMCF- Nelson Mandela Children’s Fund MHBC- Mashau Home Base Care MDGs- Millennium Development Goals PCTSC- Palliative care training and support centre HPCA- Hospice Palliative Care Association LVVDF- Litshani Vhana Vhade Foundation Report compiled by Professor Netshikweta Tel: 0159628239 Palliative care report [Draft 1] Professor Netshikweta 20 March 2012 Page 34