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Siyayinqoba Beat It! 2004 Ep. 19 –

Community home based care

There are many people in our communities who are sick with AIDS defining illnesses. The burden of care falls on women and children, who often can’t cope. This is where community based care is needed the most. But what exactly is community base care? Whose responsibility is it to provide the care? Siyayinqoba visited the Stanger Centre in KwaZulu Natal to see what community based care involves.

Jason Wessenaar: Sanibonani siyani amukela kusiyayinqoba Beat It! support group. Hi Welcome to the Siyayinqoba Beat It Support Group. My name is Jason. Each week we get together to talk about issues that affects our lives with HIV, from home based care to male to male sex and emotional support. USiyayinqoba nguhlelo lwakho loku phila kancono ne HIV. Uma uphila ne ngculaza {IsiZulu} [Siyayinqoba is your guide to better living with HIV and AIDS. [If you are living with the virus HIV] or you have a partner a family member a friend who is HIV positive this programme is for you. To help us to discuss today topic on community based care we are joined by Mama Darlina a community based care worker from Lost City in Mitchell’s Plain.There are many people in our communities who are sick with AIDS defining illnesses. The burden of care falls on women and children, who often can’t cope. This is where community based care is needed the most. But what exactly is community base care? Whose responsibility is it to provide the care? Siyayinqoba visited the Stanger Centre to see how community based care is working. Let’s check this out.

Providing care and support in the community

Stanger, KwaZulu Natal

Zakhele Khoza (Enduduzweni Drop-in Centre): Sawubona Sis Marie, Kunjani na? {IsiZulu} [Hello Sister Marie. How are you?]

Maria Ngcobo: Ngikhona {IsiZulu} [I’m okay.]

Zakhele Khoza: Sengiphinde ngabuya. Ngikuphathele amapilisi manje uyezwa. Lamapilisi azokuphilisa uyezwa, lamapilisi uzowadla izinsuku eziwu four uzowaqala nahlanje ukuwadla. Okay, makube usidlile, usudlile njengamanje? {IsiZulu} [I’m back again. I brought you these pills. They are going to help you. You are going to drink these pills for four days. You can start today if you have already eaten. So have you eaten already?]

Marie Ngcobo: Ngiphuze I tiye. {IsiZulu} [I’ve had a cup of tea.]

Zakhele Khoza: Usuthi? {IsiZulu} [Are you full?]

Marie Ngcobo: Ngisathi, ngizophinda ngiphuze. {IsiZulu} [No, I’m not full; I’m going to have more tea.]

Zakhele Khoza: Yebo, ufanele uphuze usuthe futhi. Lamapilisi lana kukhona ilwulondwa phakhathi yezwa one, one, one, one uzawaphuza izinsunku izungu four. {IsiZulu} [Yes, you must drink and become full. So in this box there is one type of tablet and I want you to take it for four days.]

Maria Ngcobo: Four days, okay.

Dr Nalega Constance Kganakga (Director HIV/AIDS, Department of Social Development): The role of this chief directorate is to mitigate the social and economic impact of HIV and AIDS. We view community-based care as one of the vehicles through which we can manage to reach that objective. Currently we have four hundred and twenty home community-based care organisations that are offering services to people in all the nine provinces in the country, offering the care and support to communities. Care givers who are trained go to families and support them. Be it through material support, making sure that they get food parcels. If there are orphans in those communities, they are identified, and then they are supported to be able to get grants. We have drop-in centres, for example, that are manned by these organisations. The drop-in centres will be there to drop in food for people who don’t have food in the home. They can get to the drop-in centre, they can get at least one meal, one adequate meal a day. Children would come there in the morning before they go to school, get food then go to school. Then in afternoon come back to the drop-in centre, get a meal, and then stay in the drop-in centre, be assisted with homework, and then in the evening go back. We don’t believe that people should be put into institutions. What they need is just the support from the organisation and from government to be able to continue with their normal life as families, as individuals, as communities.

Neliswa Matshaya (Enduduzweni Drop-In Centre): I’m Neliswa Matshaya. I’m an instructor in the project in Enduduzweni. I’m teaching people how to support themselves. I’m actually empowering these people so they must not feel ashamed of this disease. I’m just informing them so that they can stand for themselves. I’m giving them skills so that they can go in the community, even if they are sick they can help their families by sewing and selling these things to the community. They are doing things like pillows, bed linen, children’s clothing and school uniforms. We are focusing on these things so that they can stand for themselves; that is the main reason why we are doing it. I’m very happy to work for these people because I am actually also supporting them, giving them moral support that this is not the end of the world. They can stand for themselves; they can do this for themselves.

Dr. Nalega Constance Kganakga: When they need hospitalisation, they should be referred to the hospital. But as soon as they get out of that acute stage, they can go back to the home and be taken care of by the home environment.

Support group

Jason Wessenaar: Can you share with us your experiences of community-based care in the ‘Lost City’ (Mitchells Plain).

Mama Darlina Tyawana: Mina ndiyiqale ngokuyenza uDOTS. Ndinika i-TB treatment ku patient’s ezine TB ezinye ke ziHIV positive. But ke ku-picture endiyibone apho ndinga qina nje ukuthi i-food parcels bayazifumana through the clinic supported by government. Mna ngokokwami anda organisor i-papa yoba batye xaba qala ukuzotya i-treatment. {IsiXhosa} [I started with DOTS; giving TB treatment to patients who have TB and those who are HIV positive. But from what I’ve seen here, I agree that they get food parcels from the clinics, supported by government I give them porridge to eat when they start treatment.]

Busisiwe Maqungo: Andikayiboni andifuni ukuxokha but mna ndidim ndiyi AIDS activist andika ndibani nento uluhlobo and if ikhona ingaba ezenu ezinikwe yi rhulumeni zi trained na? I lantuka home based caregivers. As siba sibonile kulanto uMaria lasisi ungaphilanga pha, mina ndinotise ukuba une thrush okhokuqala. The guy omuphathele I treatment, I assume yi home based carer. Do you think lamntu u trained anikhe umntnu one thrush I tea, ukuba uzavumela umuntu one thrush after I tea a thathe amapilisi wakhe to me it does not sound like the guy is trained. {IsiXhosa} [As an AIDS activist I have not seen or heard of it. It if does exist, are the home based carers trained, because as we saw form the video, I noticed Maria had thrush? So the guy who have her treatment, I assume he is a home based carer, he gives someone with oral thrush tea and then she must take her treatment. To me it doesn’t sound like the guy is trained.]

Mama Darlina Tyawana: I process esiphethe yona ngoku ngalomuzuzu, kanga ngoba I home based care training iyenzeke kuthi thina zi DOTS supporters. Yenziwa e Westridge clinic. Because we are supporting them with pap and soup. Ndinayo ndiyifumana ka rival Network. Izinto ezi nutritious. {IsiXhosa} It’s a process we are working on at the moment. Home based care training also happens to DOTS supporters. It’s done at Westridge Clinic, because we are supporting them with pap and soup. Things that are nutritious.

Lihle Dlamini: I’ve had an experience where I had to be given DOTS, but then there is this NGO, but then the person was supposed to give imedication to me, did not come on time. I had to walk there to fetch my medication, in such a way that I decided that I should keep the medication for myself, because she wasn’t reliable. And sometimes we would hear that she has been given ama-food parcels to give to us who are sick, but I never received any. She was feeding her own family with those food parcels.

Jason Wessenaar: Lihle ngiyayizwa into uyitshoyo {IsiZulu} [I hear what you are saying] I think is very important. UKonnie says there are four hundred plus centres that do this, but we don’t actually know where these places are, we don’t know what criteria they are using to choose these organisations that are helping people. But I think it’s important, there needs to be some kind of system. How can we complain if we’re not happy about these services that they are rendering?

Lihle Dlamini: And you find that those people who are community-based carers don’t have literacy on antiretroviral dosages. There’s one NGO in our community who was supposed to be looking after a support group, who was telling amasupport group members not to take ARVs because they are toxic. And one of those people came to me and asked me: “But how could you tell us to take antiretroviral dosages because they are toxic?” and I had to go back to her and ask her where she got that information from, and she was treatment illiterate, and I had to teach her about antiretrovirals and tell her that what she had told those abantu {IsiZulu} [people] is very bad.

Vuyani Jacobs: I used to depend on food parcels. Now these food parcels used to come in and I used to be given all those kinds of food parcels, and I used to take it home. And that’s the same thing that used to happen to people who report at clinics. And in some cases, people don’t report to the clinic, because situation is better. And the food, if it is not used, it will remain in the cupboards. It’s the same problem, the social services problem that the grant-givers are getting. What is can be solved is the overall outlook in terms of the response of government to the poverty, to the helplessness of our people.

John Vollenhoven: Vuyani said it very correct. But my response is, I came from full blown AIDS to where I’m sitting now. And we’re so lucky that we have accessed the treatment. But there are thousands of people out there who haven’t got this.

Jason Weesenaar: We will continue our discussion on community based care after this break.

Jason Weesenaar: Welcome back to the Syyayinqoba Beat It support group. The programme for everyone infected and affected by HIV. The Siyayinqoba team visited Emduduzweni Hospice in Pietermarzburg during the community health based training workshop. Lert’s check it out.

Providing care and support in the community

Pietermaritzburg, KwaZulu Natal

Nobugle Ndawonde: Okay nindonse lana? Nantsi insipho, okay nanka amanzi. Okay, yabona bawuyivala uwanza kanjani? Akheze olandelayo ozongeza. {IsiZulu} [Okay, you must pull here. Here is the soap and here is the water. So the next one can come and wash.]

Nobuhle Ndawonde: Ngingu Nobuhle Nfawonde. Ngisebenzela lana kwa hospice association of Umsunduzi, nje ngoba Umsunduzi uphantsi ka Umsunduzi municipality. Isikhathi esiningi for i- traning siyithola kuma funders ephesheya. Ngingu training facilitator. Siya fundisa abantu emphakathini ukuthini ukunakekela abantu abandingwa ukunakekelwa. Masikhuluma ngabantu abangigwa ukunakekelwa sikhuluma ngabantu abagulayo, laba abakubazekhile laba abangakwazi ukuzisiza bese kube habantwana abahlukhumezwe ngedlela ezihlukene. Ama-vurnable children. {IsiZulu} [I’m Nobugle Ndawonde. I’m working here at the hospice association of Umsunduzi which is under the Umsunduzi Municipality. Most of the time we get training from overseas funders; I’m a training facilitator. We train people how to care for those who need care: people who need care and are sick people, the disabled and those who can’t help themselves and children who have been abused in different ways.]

Bhekinkosi Masikane (Msunduzi Hospice): Mayelana nezidingo qangi eziqonde qho eziphuma kuhulumeni zizekuthina noma umsebenzi oyenziwa nguhulumeni ubheke kuthina njengama care givers noma emuphakathini asoneliseki. Kangaka ngokuthi la sisebenza size sisebenzise izitukutuku zethu ukuncedisa abantu, kangaka abantu emakaya angithi abantu abadli abanako ukudla, kwenzeka sometime kube himina ozophuma iR20 or iR10 nginikhe umuntu, ukuthi umuntu adle ngoba ayikho into uhulumeni asisiza ngayo. {IsiZulu} [We as caregivers and sympathisers don’t accept the work which is done by the government. In our situation we have to work with our own resources to help the people because most of our people don’t even have food. Sometimes I have to take my own money, a R20 or a R10 and give it to the people to buy food because we get nothing from the government.]

Thulisile Mbatha (Msunduzi Hospice): Mina ngingu Thulisile Mbatha. Ngiyi care giver yakha hospice. Nginakekela abantu abagulayo abagulela emakaya. Usisi lo simu nakekelile emvakwe ukuba sekha tholile ene uya gula akhaphilile. Sihambisana nomunye umunakekeli uMduduzile Twala size sizomubheka sibuye sivakashe nomunye u sister usis Winnie okuhuyena esibambisene naye la emphakhathini. {IsiZulu} [I am Thulisile Mbatha. I am a care giver at the hospice. I’m looking after the sick patients who are sick at home. We have been looking after this sister since we found out she was sick. It was me and another caregiver and the other sister.]

Winnie Maphanga: Ngiqale ukugula ngonyaka odlulile, bathatha amanzi wabuya udokothela wathi ngiphethwe yiTB yamathambo. Banginikheza ke i-treatment ngawaphuza, ngoba kwathwa ngiwaphuze for nine month. Mangifika eclinic bathi ene mangisheke ukuthi igazi lami ngoba naku ngi weak futhi bafika bangi sheka ukuthi ngi positive. Kwafika abantu laba abasebenza kwaHospice banginakekela kakhulu, bangisiza ngako konke. Bengivakashela ekaya mangabe ngindinga usizo benginakekela ukudla futhi bengipha ngoba andikwazi nokungi clinela nokuthi ngizigeze nje. {IsiZulu} [I started to get sick last year. The doctor told me that I had TB of the bones. They gave me treatment and I used it for nine months. When I went to the clinic they checked my blood because I was too weak. So they found that I’m HIV positive. The people from the hospice came to help me a lot. They visit me at home and if I need help they give me food. And then clean my house and wash me.]

Thulisile Mbatha: Nanukhuthi esikhathini sethu besikholwelwa ukuthi isibhedlela yisona esihle ukunakekela umuntu ogulayo. Njengamanje basibukha isimo sokugula baningi abantu abagulayo izibhedlela zigcwele abantu babaphindisela emakaya. Ngesikhathi baphindiswela emakaya uphakhathi nomundeni abanowo amaskills okunakekela labantu. So I home based care cos iyaku equipa umndeni ngama skills ukuthi bakwazi ukukunika uthando, athi lomuntu noma adlula emhlabeni abe alutholile uthando lokhunakekela. {IsiZulu} [We used to believe that the hospital is the right place to look after sick people. But these days, there are so many sick people and the hospitals are full. So, sick people are taken home. But the community and families don’t have the skills to look after them. So, the home based care course equips the families with the skills to love and care for the patients so when these people pass away, they would’ve been loved.]

Support group

Jason Wessenaar: Having watched that insert do you guys this, that there is a need to invest in home based care in light of the fact that there is treatment coming in, or the rollout coming in?

Vuyani Jacobs: The unfortunate part is that treatment comes late, and it’s still going to come late to many people. Because home based care, it’s all about people really being failed by the system, by the health system failing them. And I’ve seen many of my friends so sick that even if you can pop them a lot of pills, pop them a lot of everything that they will never get out of here; just all wait the time of that death. And that’s very painful. The first programmes on home based care was how you talk to people to die better, how you brush people for their death, not how you help them with their life to get out of that. So what we need to say is that that’s wrong, and it should change.

Jason Wessenaar: So the more we keep people healthier, we intensify the rollout, the less we will focus on home based care, cause home based care will probably still be there, but it will be lessened.

Vuyani Jacobs: Into ye home based care yifanele ukuba yisebenza kanizi. Ingabi ukunika abantu izinto zokhutya zihlale emulonyeni. Awuphili ngokutya kodwa. {IsiXhosa} [Home based care should not only give people food because we don’t only live by food. I want people to give me an understanding of what’s happening with my body, what’s happening with my mouth, what’s happening with my psychological being. I don’t want people to come up because they’re shamefully, because of their duty in society that they have time to spare, that they will shamefully give around food. I don’t want that. I want people who are full of empowerment. Okho sithathu kufunekile bayazile xawu unida igrant holohlobo lwini logrant olinidayo, so that bakuncedise ngoku bhala nokucinga bakuncebise. Ulosine bakwazi ukuncokola nawe ukuba uzobhubha okanye uzobhubhelwa okanye kuzovela into ezobabudlungu kufamily. Uyayazi thini siyabaleka gqithi lendawo yokhu thetha ngoku bhubha. Nayonke lento because nami ndiyayibaleka. Funeke ukwazi ukuyithetha sikwazi ukusebenzisana naye ukubanceda abantu bakwazi ukuphila. {IsiXhosa} They should also know what grants people should get so they can help people fill in forms and give them advice. They must be able to counsel families about death and loss. I know people avoid talking about death, I do too, but we need to talk about it, so that we help people survive.]

Anthony Fernandes: Mama Darlina, how big is your home based care community? How many volunteers do you have, and how many sick people do you look after? In your opinion, do you think it’s working or it’s not working?

Mama Darlina Tyawana: My clients are not a lot. I’ve got eight now because the others are finished TB treatment. The thing is, the home based carers went to DOTS, and then, since there is no payment like a salary, they drop down, and I am the only one who is a DOT supporter in that whole community. Then at the clinic, you are given an instruction that if you want to eat your treatment at home, you are given the name: “Mama Darlina is there if you want to go.” Others don’t want to go at home, they want to get it from clinic, they walk to clinic. And then now, there is this training that is done. Now there are more peer educators, but they haven’t started yet.

Jason Wessenaar: We will continue our dusscussion on community based care after this break.

Jason Wessenaar: Welcome back to Siyayinqoba Beat it! Support group. The programme for everyone infected and affected by HIV. We are talking about community based care.

Lihle Dlamini: I think that government should make it ukuthi kube [that it must be] quick ukuthi abantu bangene ku-rollout [that people shouls start the roll-out] it must employ more staff, train more staff, ukuthi abantu bakwazi ukufakwa ku-roll out [to ensure that people should be put in the rollout] quicker, so that the people should get better quicker, and get back to work, to their lives, instead of going back to home based care. {IsiZulu}

Jason Wessenaar: So people don’t necessarily have to die. They can also increase the number of centres where the rollout is happening. The same process they are using for the home based care can be used for rollout. You wouldn’t have been here, you wouldn’t have been here, Uncle John wouldn’t have been here had it not been of the fact that you went on treatment. You’re able to work, you’re able to continue your life, you’re getting married soon. You’re able to help other people also.

Vuyani Jacobs: Asizoba yi case ye home based care, sendithetha ukuba asizogula, sizo nida ukuthi masibe, sifene, sibesinjongwa ngabanye abantu, sizinjonge thini. Kuthathwe yonke lamali isizosebenziswa kuyo yonke langxaki, isetyenziswe kumaciza kagawulayo, amaciza we oppunistic infections. I home based care mayi fumane imali kondwa mayifumane ubuncane bemali. {IsiXhosa} [We don’t want to rely on home based care. We don’t want to be sick and have other people looking after us. We should be taking care of ourselves. All the money should be used for treatment, such as HIV and opportunistic infections. Home based care must get a small amount of money.]

Jason Wessenaar: For me it is worried that there are only four hundred and eighty community based organisations, and we can’t actually rely on the integrity and the quality of support that they are giving, so we probably need more organisations that provide this kind of service. But then it is also up to us to keep the government accountable, to say: “Give us more of these community based organisations” or for people to come up and say: “I’m doing work like Mama Darlina is doing, why don’t you support my organisation because we’ve got a proven record. The community knows us, we are doing something, instead of relying on other organisations that you don’t even know what they are doing, whether they are doing quality work or not, whether they are doing holistic care in terms of counselling bereavement, treatment literacy, supplying of food and helping people applying for grants.” So, for me, I think it’s kind of worrying. As activists we need to do something about it, to keep the government accountable.

Vuyani Jacobs: Singabantu abaphila nentsholongwane masencedisaneni nombuso nohulumeni nge-policy azibekayo. Ngohlobo lokuthi mna njengoba ndiphila ne ntsholongwane mandizaze ukuthi bendigula yintoni iminyaka mihlanu edlulileyo. Like zeziphi izinto bendigula yizo. Okwesibili, ngoba leyo sithi masiyibiza sithi yi treatment plan yindlela wena obona ukuzixoxosha ngayo. Okokuqala fanele uzazi zeziphi i- opportunistic infections ukhe wanazo kuleminyaka emithathu mihlanu idlulileyo. Uze uyibekhe phantsi uxonde ukuba yezaka njani xayi I nyangeka. Okwesibini, ujonge ukuthi okwasemazantsi nokwalapha kwotata no mama sizazi ukuthi zintoni izinto besigula gazo like I sexual transmitted infections uzazi ukuthi ngexesha elithile uyewaba ne herpes. Okwesithathu masiye kugqirha xho, xho kwenyanga ngoko date zento singa, singathi hayi i-date mandiyiyeke ukuba mna ndiphila kakhuhle, ngoba kufuneka ugqirha andijonge ukuthi I weigth yami ingakanani ngokwasengqondo ndi phila kanjani, I skin sami si dehydrated kanjani, ukwazi ndincedakale kwexesha. Okwesine okubalulekileyo, si tester I CD4, ngokwe CD4 ndithetha ukuthi si tester ukuthi amajoni wumuzimba angakanani apha kuwe. Lento yithetha ukuthi xha ndi funeka ukuba ndingene ku ARV’s ndibe ndingena khona ngexesha. {IsiXhosa} [HIV positive people must help the government with their policies. For example, I’m HIV positive therefore I have to make sure that I know about the illnesses I’ve been suffering from in the past. We call it a treatment plan. It’s a way of taking care of yourself. You must know what opportunistic infections you have suffered form over the past years. You must know how to treat it. You have to know what sexually transmitted infections you’ve had. You must know when you had an opportunistic infection like herpes. You must visit the doctor regularly and not skip any appointments because you are feeling better. The doctor must check your weight, your psychological being, and if you have skin dehydration so that you can be treated. It’s important to test your CD4 count regularly. By CD4 count I mean, to test the amount of soldier cells in your body. That means when I have to start taking ARVs, I will start at the right time.]

Jason Wessenaar: Siyabulela [Thank you] Mama Darlina, the Support group and the viewers at home. Things to remember are:

1. If you are caring for someone who is very ill, find out where your local community based care centre is.
2. People who are terminally ill still need access to treatment and healthcare.
3. Community Home Based Care should include information on how to access a grant, and effective treatment of opportunistic infections.

We hope that you have enjoyed the show and are feeling the Siyayinqoba Spirit that together we can Beat It. We you have any questions please contact us on the numbers on the screen right now. Join us again next week on the Siyayinqoba Beat It support group. Till then, stay healthy and stay positive. Salang Hantle {SeSotho} [Stay well].

Onscreen text: In memory of Maria Ngcobo, who passed way in August 2004 from AIDS

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