Children's Health HIV and AIDS Public Health & Health Systems Social Services

Death and dying

Each year the Red Cross Children’€™s Hospital in Cape Town treats about 170 000 children aged from 0 to 12 years. Many come from Mozambique, Malawi, Kenya and elsewhere in Africa and many of them are suffering from terminal illnesses. But how do health workers cope with the trauma of losing the young patients who have become part of their lives?

This is part one of two series. In our next in story we will feature a nurse and a parent talking about the importance of parents presence when their children are sick and how they cope with sick and dying children.

Duration:6min 23 sec

Transcript

THANDEKA: Izibhedlele ziyindawo yonyango nempilo nokunonophela izigulo. Xa ukufa kufikile oogqirha, abongikazi, nabanye abasebenzi bezempilo baye bacacelwe yinyaniso yokuba ukufa kufikile. Ingaba ke baziva njani? UFuneka Ginger, unontlalontle omkhulu eRed Cross isibhedlele sabantwana ecacisa ezinye zezinto abahlangabezana nazo xa bejongene nokufa ebantwaneni. UFuneka echaza ukuba wamchazela njani lomntwana one minyaka eli-12 ukuba unale ntsholongwane.

Translation: Hospitals are a place where people come for treatment and to recover from disease. When a patient dies hospital nurses, doctors and other health workers have to face the reality that someone has passed away. How do they cope with death? Funeka Ginger a Senior Social Worker at Red Cross Children’€™s Hospital talks about the difficulty of facing death in the paedriatic wards. Funeka explains how she told the 12- year – old girl she was HIV positive.

FUNEKA: Okokuqala we approach i-multi disciplinary approach whereby sinikana ifeed back ngomntwana ngamnye ukubana ingxaki anayo ingantoni. Nam ke ndizame ukuqonda kugqirha iprogress yomntwana. In some cases kufumaniseka ukuba umntwana se develop(ile) in terms of ukufuna ukubuza ukuba kuqhubeka ntoni ngam. At some stage bendinomntwana ona twelve o-HIV positive and bekunzima koogqirha ukumxelela into yokuba upositive because bebesafuna abe right kuqala, in terms of ihealth yakhe because ungene apha ene pneumonia then e-under i-oxygen so uthe xa ephila ke eba bhetele kwi oxygen leyo wafuna ukuqonda ukuba uzakugoduka nini na wabe utata wakhe engekho.

Ekuhambeni kwexesha ke kwanyanzeleka ukuba ke ndimxelele ukuthi bonke abantwana abalapha esibhedlele bayagula and banezigulo ezahlukeneyo. Ndimcacisele ke ndathi bakhona abantwana aba sugar diabetic, bakhona abantwana abane cancer, bakhona abantwana aba- HIV and ezinye zezi zigulo azinyangeki. Ndamcacisela ukuba sizakuphinda sithethe, sithethe kakhulu nangezigulo ezikhoyo apha esibhedlele ndizokucacisa nangamayeza asetyenziswayo apha ebantwaneni. Ngemini elandelayo uzizele apha e-ofisini yam wathi hayi kaloku sisi Funeka ubuthe sizakuthetha ngezigulo, ngezigulokulapho ndiye ndathi isigulo sokuqala endizakuthetha ngaso, sisigulo esihlasela wonke umntu apha emhlabeni i-HIV but ke kunzima uku educate(a) umntwana nge HIV ngomlomo. I had to use i-drawings for ukuxela i-HIV xa ingena ndambonisa ukuba ingena yenze ntoni emzimbeni so it was easy for her to understand ukuthi i-HIV ingena ibulale amajoni omzimba and then I used ii-drawings then wa-understand(a). Uthe xa endibuza ke ngoku sisi Funeka xa umntu ke ngoku sengenwe yi le HIV emzimbeni ibulala amajoni kwenzeka ntoni? So ii-questions ebezibuza bezibonakalisa into yokubana uya understand(er) ukuba yintoni le HIV. Ekuhambeni kwexesha ndathi ke uyabona ke mntwanam, kuye kwafumaniseka ukuba wena uchaphazelekile unale ntsholongwane. Uye wothuka kuqala wandibamba wathi kum sisi Funeka ndizakufa na? Ndizamile ukumcacisela into yokuba, ewe mntwanam abanye abantu abangakhawulezi bafumane uncedo iyabulala, ayinyangeki yona but akhona amayeza ayithomalalisayo and ezi drugs drugs oogqirha bebethetha ngazo wena ngoku ububava bebethetha ngento yokubana bafuna ukukunika ii-drugs zizokuthomalalisa lentsholongwane ilapha kuwe.

Translation: Firstly, we use a multi disciplinary approach whereby we give feed back about each child and we discuss the symptoms and illness the child has. I try to find out from doctors about the child’€™s progress. In some cases we find that the child has an understanding of things where he or she asks questions all by herself of what is happening with her health. At one stage I had a case of a 12- year old positive girl, whom doctors were scared to tell she was HIV positive because they waited for the right time to tell her of her status. She came to the hospital suffering from pneumonia and she was given oxygen. As her health improved, she wanted to know when was she going to be discharged and go home. As time went by I was forced to tell the girl that all the children who are at the hospital are sick and they suffer from different illnesses. I explained to her that there are those who have diabetes, those with cancer and that there are those who are HIV positive and some of these illnesses are not curable. I explained to her that we will have to talk again about other illnesses that we deal with at the hospital. I told her that I would explain also about the medication routine that is used for children. The following day she came back to see me wanting to know more about different illnesses.   This gave me an opportunity to talk to her about HIV; I said this disease attacks everybody in the world although it is difficult to verbally educate a child about HIV. I had to use drawings to describe HIV, illustrating how is contracted and how it kills the blood cells and it was easy for her to understand. She then asked what happens when this virus that kills blood cells enters the body?   Her line up of questions showed how she understood the virus. I told her that doctors have found out that this virus affects you and you’€™re living with the virus. She was shocked. She held me and asked am I going to die? I tried to explain to her that, some other people who do not get help immediately die. It is incurable though there are drugs that can prolong the life span of a person living with this virus. I told her those are the drugs the doctors in the ward were referring to the time you overheard them talking about giving you drugs.

THANDEKA: Ingaba ke kunjani ukuphulukana nomntu obusele umqhelile? Apha uFuneka usicacisela ngonkwenzeka kwintwazana eyafika esibhedlele ineminyaka esibhozo neyasweleke xa igqibe elishumi elinesihlanu.

Translation: How does it feel to lose the one you were close to? Funeka tells a story of a girl that arrived at Red Cross Hospital at the age of eight – year old girl that suffered from cardiac problems. She spent most of her childhood years at the hospital and died at the age of 15.

FUNEKA: Umntwana lo waswelekayo she’€™s from Transkei and ebekhulela apha eRed Cross ebeqale ukuba lapha at the age of eight so wayi patient yethu ke. Usweleke yena at the age of fifteen of which we couldn’€™t chase her away sithi makabheke eGroote Schuur okanye kwesinye isibhedlele because ii-cardiac specialists bebesele besebenze kakhulu ngaye. We were mostly attached to kulo mntwana because we wanted to save her ekuhambeni kwexesha we could see ukuthi intliziyo yakhe nyani ukuba iya give up(a), up until ndiye nda cross(a) i-boundaries ndabe ndijonge kakhulu iimfuno zomntwana ezithi sisi Funeka, ndifuna umama wam ecaleni kwam.I had to cross that boundary of respecting i-culture yabantu abamnyama ukuba umfazi usemaXhoseni (rural areas) utata uzokuphangela apha eKapa. Ekugqibeleni uthe ngokubakho kwakhe apha e-Cape Town umntwana uye wavuya kakhulu wasweleka ke umama wakhe esecaleni kwakhe. Ukusweleka komntwana bekungekho lula kuba i-staff sonke sase ward(ini) besele si- attached kulo mntwana. I think sonke singabantu bekubuhlungu kuthi because besele simqhelile lonmntwana. Salila sisi-staff salilisana nabazali ekugqibeleni uSister In charge nabanye oogqirha ababe close kulomntwana saye sadibana senza lanto kuthiwa yi peer counseling apho si debrief(a) about ii-feelings zethu regarding i-closeness ne relationship yethu nalo mntwana so I should think I-peer counseling is the best therapy for us as i-staff.

Translation: The child was from originally from Transkei. She grew up at Red Cross Hospital. She became our patient at the age of eight. She died at the age of 15; we couldn’€™t chase her away because a lot had been done for her by the cardiac specialists.   We were attached to this child because we wanted to save her but as time went by we could see that her heart was giving up. She called for her mother to come and visit her child. Because I was looking at the child’€™s interests and she pleaded to see her mother, I had to cross that boundary of respecting the culture of African people that the wife has to stay at home in rural areas and look after the house and that man works in the city. Eventually it helped a lot for the mother to come to Cape Town because the child died peacefully in the presence of her mother. The death of this child wasn’€™t easy because we had grown to know and love her. The ward staff was devastated, we cried and we comforted one another together with the parents and the doctors. We provided peer counseling for the staff who were working close to this child. I think peer counseling is the best therapy ‘€“ because we can debrief and talk about our feelings.

E-mail Thandeka Teyise

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