ACW: Home- and Community-Based Care

Uganda: Home-based HIV treatment extends lives

2008-03-17T09:43:00.002+07:00

By, IRIN Plus News, March 6, 2008

Off the beaten track east of Uganda's capital, Kampala, a four-wheel-drive vehicle is taking a nurse, a community health worker and a cooler full of life-saving medication to Gayaza village, where they will call on homes affected by HIV/AIDS.

Although more Ugandans than ever are on antiretroviral (ARV) therapy, many HIV-positive people in remote areas still struggle to get the life-prolonging drugs: health professionals are scarce (about one doctor per 12,500 people) and community health centres are few and far between. Most villagers, mainly subsistence farmers, cannot afford to travel long distances to reach them.

A study conducted in Uganda and published this month in the UK medical journal, The Lancet, has found that home-based ARV therapy provided by trained lay counsellors could be the best option for HIV-infected people living in remote, rural areas.

Mortality dropped more than 90 percent among HIV-positive participants and their families receiving home-based care. Instead of routine clinic visits, lay counsellors visited patients in their homes to deliver medication, support them in adhering to their drugs, collect blood samples, and refer those with symptoms to the nearest clinic. The home-based ARV programme also eased the burden on over-stretched local health centres.

Mortality among the dependants of HIV-positive participants decreased, as parents who were well cared for by the home-based services were in turn better able to care for their children, and the children were less likely to be orphaned.

Conducted between 2001 and 2005 by the United States Centres for Disease Control (CDC), with funding from the US President's Emergency Plan for AIDS Relief and support from Uganda's government, the study involved 1,373 HIV-infected participants and 4,601 of their uninfected family members referred by a branch of The AIDS Support Organisation (TASO), a local non-governmental organisation, in Tororo district in eastern Uganda.

Dr Frank Kaharuza, a CDC researcher, said Tororo was chosen because of its existing infrastructure, high rate of opportunistic infections and the need to find a distribution method for newly available ARVs.

Although most participants lacked post-primary education and lived in homes without electricity or running water, between 89 and 97 percent of them reported taking at least 95 percent of their ARVs - a better rate than many clinics are able to achieve.

"Adherence was surprisingly good," said Kaharuza, who noted that less than two percent of the patients had to be switched from first-line to second-line ARVs, which was usually necessitated by drug resistance developing due to poor adherence.

Scaling up home-based care

In Gayaza, the TASO team visits Deborah Namuwaya, 52, who has been on tuberculosis treatment for six weeks. The frail woman, feet tucked into her black and yellow gomesi (traditional dress), lies on a foam mattress on the concrete floor of her two-room home, coughing uncontrollably.

"We have fuel and transport, so we must assist them," said Florence Natukunda, the TASO nurse. She provides medical treatment and other small measures that make a significant difference to patients with compromised immune systems, monitors hygiene and use of mosquito nets.

Robert Nakidumba, public relations officer for TASO, said the organisation planned to scale up its home-based care programme after the Tororo study findings.

As of June 2007, 14 percent of the 106,000 Ugandans on ARV therapy were already receiving their medication through home- or community-based care, mostly through monthly home visits by TASO staff. Researchers now plan to test the efficacy and cost-effectiveness of home-based ARV programmes in longer and larger studies in other locations.

There are more than 20 million people infected with HIV in sub-Saharan Africa, and many of them live in remote villages with poor access to health services.

The Lancet article on the Tororo study noted that finding a way to scale up the provision of ARV therapy and care, "irrespective of geographic or socioeconomic background", could significantly reduce mortality among people with HIV, improve the health of their children, and reduce the level of orphanhood.

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Source: http://www.plusnews.org/Report.aspx?ReportId=77161

SWAZILAND: Home-based care system expanding

2007-03-09T13:50:00.000+07:00

By, IRIN PlusNews, February 23, 2007

Home-based care in Swaziland is increasingly being relied on to compensate for the inadequacies of a public health system buckling under the weight of the country's HIV/AIDS pandemic.

UNAIDS estimates the national HIV infection rate of people aged 15 to 49 at 33.4 percent, the highest in the world, a demoralising environment that has led to nurses migrating to other countries in search of better salaries and working conditions.

The strain placed on the country's resources by HIV/AIDS has resulted in the public health service failing to care for the elderly, especially in the rural areas, and it is a gap being increasingly filled by volunteers within the home-based care network.

One such initiative, started by the Baphalali Red Cross Society in 1999 and orchestrated from the Sigumbeni Clinic, in rural central Swaziland. It sees community volunteers visiting homestead after homestead to monitor their clients' conditions, ensuring medication regimes are adhered to and, if required, arranging doctors visits to the home and providing transport for the collection of antiretroviral drugs and other prescription drugs. Any medical emergencies are referred to Swaziland's second city, Manzini, a 30km drive on dirt roads.

"Our responsibility is to respond to the health needs of terminally-ill patients. These are people with AIDS, tuberculosis, cancer, people who had strokes, and the bed-ridden elderly. It's all about bringing health services to the home," said Muzi Dhlamini, a male nurse who for the past two and a half years has headed-up Sigumbeni's home-based care programme for the Red Cross.

The majority of their patients are adults in the advanced stages of AIDS-related illnesses, or the elderly, an exception being eight year-old Khanya Dube (not her real name), born HIV-positive and severely weakened by chronic anemia. She has developed multi drug resistant TB, a condition, until recently, that would have been a death sentence, because the costs of taking the child to hospital for medication and hospital checkups would have been unaffordable for the family.

The health care provided by non-governmental organisations, including the Red Cross, has brought Khanya under the wing of the home-based care system, bringing life saving assistance to her and other people in isolated rural areas.

"The test found she had a resistant HIV/AIDS, and on Wednesday we switched her treatment. Generally, she is weak, weak, weak. It's the anemia. She needs transfusions, and we arranged these twice. Once she was unable to get the blood she needed because the hospital didn't have the pints," said Dhlamini, highlighting one of the public health care systems shortcomings. This week, Khanya was taken by ambulance to hospital in Manzini.

Hive of activity

Each day the Sigumbeni Clinic is a hive of activity, with small trucks and ambulances arriving and departing to take volunteer workers to far-flung areas and bringing others to the clinic for prescription drugs. About 88 home-based care patients were assisted this week, Dhlamini said, a sizeable number considering the sparsely-populated area of the widely-dispersed homesteads.

Ncane Kunene, a 26-year-old nurse co-ordinates the Red Cross's food security initiative in the area and was supervising the loading of medical supplies on a truck that will also distribute mattresses and food to patients. "Food is an element of home-based care, especially now when there is little food in this area," Kunene said.

Nomcibelo Dlamini, a 54-year-old Red Cross trained care facilitator, who dispenses aspirin, cough suppressant and similar non-prescription medications, said: "I work from a list of patients, and I must report to the clinic the state of each client. I see that the patient is feeling well. There are some ordinary tasks to perform, like changing the position of a patient in bed who has difficulty moving, to avoid bedsores. Sometimes I will feed patients."

Care facilitators are given about US$15 a month for lunches and bus fare, but their supervisor, Dhlamini, wants the amount raised to US$60 a month. Two-thirds of Swaziland's roughly one million people, ruled by sub-Saharan Africa's last executive monarch, live on US$2 or less per day.

"This will be an appeal to our donors. We face a crisis with care facilitators. They are devoting so much of their time to treating the terminally-ill that they cannot earn income to support themselves and their families. This is becoming a problem, because we need them and we are asking so much of them," he said.

The care facilitators also provide advice to relatives on how to care for the terminally ill, including the use of rubber gloves when bathing and tending AIDS patients and keeping accurate records of medicines taken.

"The families are thankful for this programme. It is scary to have a loved one ill and you don't know what to do. We offer moral support, and that is really an important part of what we do. When this programme started, there were people dying of AIDS without medical assistance. The need for home-based care is not new. But HIV/AIDS has accelerated the response," Dhlamini said.

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Source: http://www.plusnews.org/AIDSReport.ASP?ReportID=6717

Mozambique: HIV/Aids Carers to Be Taught ARV Management

2007-01-24T14:45:00.000+07:00

By, UN Integrated Regional Information Networks, January 16, 2007

The Mozambican Red Cross will begin training hundreds of volunteer workers to manage antiretroviral therapy (ART) for the HIV/AIDS sufferers in their care.

"This training is extremely important and will improve the work of our carers," Paula Macava, the Red Cross Mozambique coordinator of the HIV/AIDS programme, told IRIN. "We have now finalised an eight-module training package on antiretroviral therapy management, specifically designed for carers."

The three-week training package for volunteers, who should have at least basic reading and writing skills, includes information on how to judge the preparedness of a client to start antiretroviral (ARV) medication, ensure that those using the drugs stick to their regimen, and the importance of eating nutritious food when taking anti-AIDS medicines.

A handful of NGOs have started ARV management training for carers but their reach is limited, whereas the Red Cross has a nationwide network of 600 carers in its home-based care (HBC) programme, which operates in 9 of the country's 11 provinces.

The national HIV/AIDS prevalence rate for adults is 16.2 percent but rises to 19 percent in Manica and 26 percent in Sofala - the provinces bordering Zimbabwe. According to UNAIDS, Mozambique's HIV prevalence rate is the 10th highest in the world, and nearly 80 percent of the country's about 20 million people live on US$2 or less a day.

According to the health ministry, the government, with the support of partner organisations, provides ARV treatment to 34,000 people and aims to have 50,000 on ARVs by the end of 2007. The ministry estimates that 250,000 people may require ARV treatment.

Managing ARV treatment in Mozambique presents a huge challenge, especially in the sparsely populated rural areas where infrastructure is poor.

Red Cross carer Angela Mondlane conceded she was being overwhelmed by the demands of the HIV/AIDS pandemic in her hometown of Moamba, 60km northeast of the capital, Maputo. The HIV/AIDS prevalence rate for adults in Maputo Province rose from 13.5 percent in 2000 to 20.7 percent in 2004, according to health ministry figures.

Mondlane, 42, a mother of three, walks to visit five chronically sick people at least three times a week because her bicycle is broken. Some of them are on ART, but she admits that her knowledge of ARVs is rudimentary, saying, "I need to understand the ARV drugs better."

Her ignorance of administering ARVs showed during a house call on HIV-positive Bata (not her real name), 21, who lives with her aunt and six other orphaned nieces and nephews.

Bata has apparently just started second-line ARV treatment, but neither she nor Mondlane know what these drugs are, or even if they are ARVs. Her aunt is also not sure exactly what the medication is, but thinks it must be ARVs because "she [Bata] is always hungry".

"I know I must take these tablets twice a day. They are different from the other ones - the first lot of tablets made me very sick," said Bata, who has never received any formal education.

Like all carers, Mondlane participated in the health ministry's two-week training course, which teaches basic medical knowledge such as first aid and counselling, but does not include training in administering ARVs. "I am looking forward to the training on ARVs, so I can care for my clients better," she said.

Source: http://allafrica.com/stories/200701160849.html

RWANDA: Locals taking AIDS orphans, widows under their wing

2006-11-24T15:44:00.000+07:00

By, IRIN PlusNews, November 23, 2006

KIGALI - The continued poverty and suffering in Rwanda, 12 years after the genocide, is spurring local people to take responsibility for orphans rather than wait for handouts.

"I survived the genocide but my parents did not. After looking after my brothers and sisters I looked around and saw many more children who needed support, like I received from friends and neighbours when I was a child," said Emmanuel Ngabire, who founded of the Rebero Orphans Centre with Leonce Mpenzi.

The centre, in the suburb of Gikondo, in the capital, Kigali, cares for 70 orphans and 18 widows who contracted the HI virus through sexual violence during the genocide.

An estimated 270,000 Rwandan children have lost one or both parents to AIDS-related illnesses, while 800,000 people are thought to have died in the genocide, leaving the country with the highest number of child-headed households in Africa. Rape was deliberately used to intimidate members of the minority Tutsi community and moderate Hutus.

The Rebero centre, where the children come to play after school each day, is supported largely by a group of Rwandan professionals, who donate an average of US$230 per month to feed the children and widows, and also chip in for medical expenses and other emergencies.

Jacqui Sebageni, one of the centre's benefactors, commented, "When we first met these two young men in April, I was struck by the fact that even though they were themselves on a survival level, they reached out to help people in the same situation."

NGOs and the government provide support in their respective capacities, but orphans also need the guidance and support that people with intact families often take for granted. "Because of our country's history, most Rwandan families that have some means are supporting four or five other families," Sebageni said.

Mpenzi met many of the centre's patrons while working as a waiter at Kigali's Intercontinental Hotel. When he had enough pledges of support, he left his job and became a full-time volunteer at the centre.

Twenty-three of the children are HIV-positive, including Jean-Pierre, 6, (not his real name), a shy football enthusiast. "Both his parents are infected," Mpenzi said. "The whole family is on antiretrovirals and his parents are too poor to pay the small fees ... when he starts primary school next year."

Jean-Pierre's family, like the families of other orphans and widows supported by the centre, receives seven kilos of beans and six kilos of flour every month.

Another beneficiary is Venancia Nyirabuzara, 53, whose husband and much of her extended family were killed during the genocide, leaving her with three children. She contracted HIV after surviving a brutal sexual attack when she was three months pregnant and transmitted it to her son, now 12 years old.

"I wanted to die after the genocide; even when I started falling ill and had a serious skin infection I refused to seek medical treatment," Nyirabuzara said. "I hated everyone around me and my children suffered; we had little food and no money because I didn't work."

Ngabire visited her five months ago and encouraged her to join a support group for women who were HIV-positive as a result of suffering sexual violence during the genocide. He also started bringing her weekly rations of flour and beans, and urged her to be tested and seek treatment.

"He took me to meet these women who showed me that I was not the only one with the same problem. I can be free and talk to them about my illness and my experience," Nyirabuzara said. "My children are also happier now that I am more active and not so depressed; I realised that when I was suffering, they were as well."

Since she began a course of life-prolonging antiretroviral medication five months ago, her CD-4 count [which measures the strength of the immune system] has risen from 210 to 320, but she has not yet told her son that he is HIV-positive, or that she is, but hopes she will have the courage to do so soon.

Ngabire and Mpenzi are trying to build a home where they can focus on caring for underprivileged HIV-positive children. "God protected me during the genocide and I promised that I would protect others," said Mpenzi. "Our community must care for these orphans - if we care for each other we will never see the same kind of killings again."

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Home-Based Care Reduces HIV Prevalence Rate

2006-11-20T14:13:00.000+07:00

By, Victoria Muringayi, Zimbabwe Independent (Harare), November 10, 2006

THE National Aids Council (NAC) has attributed the decline in the Aids prevalence rate to various projects such as the home-based care system which deals with people living with the HIV/Aids virus.

NAC board chairman, Reverend Murombedzi Kuchera, said the awareness campaigns being carried out by various stakeholders nationwide were helping reduce the prevalence rate.

The prevalence rate for the HIV virus is now down at 18,1% from the previous 20,1%, while projections point to a reduction to a single digit rate by 2010," he said.

"Home-based care is one of the very important strategies in national efforts to address challenges faced by Aids victims at home."

Zimbabwe has over 300 000 people who require anti-retroviral drugs, but only 42 000 of them are receiving treatment. The remainder have to be catered for through home-based care initiatives.

The NAC said it was receiving US$250 000 for anti-retroviral drugs every month from the central bank to cater for those who cannot survive without the drugs.

"We have anti-retroviral drugs that can cater for 42 000 people who are on treatment and need the drugs constantly," Kuchera said.

"We are currently mobilising our resources so that we can source funds for patients on anti-retrovirals so that everyone infected with the virus receives the drugs."

Kuchera was speaking at a community home-based care certificate award ceremony held in Harare last Friday by a non-governmental organisation Jekesa Pfungwa/Vulingqondo.

Jekesa Pfungwa funnelled at least US$30 000 that it received from Irish Aid through Zimbabwe Aids Network to offer community home-based care to 20 monitors and 10 field officers throughout the country.

The money was used to buy bicycles, home-based care kits for the monitors and the field officers to improve efficiency in the programme.

Jekesa Pfungwa deputy director Mabel Moyo said the community home-based care course is the third that they have offered to the community and the 20 monitor's role is to educate and give information to primary care givers, who are family members taking care for the terminally ill.

"The home-based care monitors and field officers have undergone a refresher training course which is a special programme, that was done according to the national standards as required by the Ministry of Health," said Moyo.

Source: http://allafrica.com/stories/200611100363.html

MALAWI: Home based care eases pressure on public health sector

2006-11-03T15:52:00.000+07:00

By, IRIN Africa PlusNews reports, August 5, 2006

MZUZU - Faced with the devastating impact of an HIV/AIDS epidemic compounded by abject poverty, Malawians have eased the pressure on state hospitals by caring for chronically ill family and neighbours at home.

A home based care (HBC) project in Northern Malawi has assembled 225 young volunteers in the region's nine districts to provide community based support to homes and guardians looking after people living with AIDS (PWAs). The aim is to ease their suffering and prolong their lives.

Levi Soko, the acting project coordinator for HBC told PlusNews that the project was also looking after 4,000 orphans - providing them with school fees, school uniforms, learning materials and, where necessary, bedding.

"We are supporting 860 affected families who are hosting chronically ill patients. By the end of the project [our target is] 3,000 guardian families. The goal of the project is to create awareness of HIV and AIDS prevention and transmission messages, and also to support guardians that are looking after the [PWAs]," Soko said

It is hoped that the project, which began in 1996, will be able to support 5,000 orphaned children by 2005.

The HBC concept, which gets village committees to organise volunteers to help families care for people laid low by AIDS, is becoming increasingly popular throughout Malawi. The country's 22 district hospitals, including four referral hospitals, are struggling to cope with the overwhelming number of sick people.

HBC minimises the number of times a person would have to be hospitalised.

In Malawi, AIDS kills 70,000 people every year. It is estimated that between 850,000 and one million people now carry the HI virus that causes AIDS. An indicator of this is that 75 percent of Malawi's recorded 27,000 tuberculosis cases in 2001 were HIV positive, according to hospital sources. It is also estimated that 38 percent of the people who have HIV/AIDS are in the most productive age group.

Jennie Mueller, head of Development Aid from People to People (DAPP), a project that helps communities implement programmes to cope with AIDS, said HBC also helped to educate families about HIV/AIDS.

"It helps families understand the illness and people can die with dignity at home. It provides hope and a way to cope and it helps the grieving process because the community would already be reaching out to that family over the period of illness," she said.

Soko said, when possible, the HBC project also offered vocational training such as embroidery, mat making, welding and carpentry to orphans.

"If one community member has a workshop, we request them to offer internship. We do not have a formal structure to accommodate all of them [orphans]. We're using community resources that are on the ground," he explained.

The HBC project is supported by the Catholic Development Commission of Mzuzu Diocese with funding from Catholic Relief Services and a British-based catholic organisation, CAFOD. Soko said the project also worked with other organisations with related projects such as the District Social Welfare and District AIDS Coordinating Committees.

"They really assist us in implementing our activities. We also interact with all the other churches. As of now, we have nine home based care providers, also known as parish coordinators, and two field officers who monitor the care providers," Soko said.

The volunteers had mobilised their communities who donated items such as used clothes, maize flour and sugar while the HBC project provided other sundries, such as basic drugs and vitamins. With the assistance of the volunteer network, the project aims to enable guardians to better manage and care for HIV/AIDS patients.

"We provide foodstuff and Likuni Phala [a porridge] to boost the patients' nutrition. Sometimes the volunteers provide bedding, depending on the needs of the family. But most of all, counseling is emphasised so that the guardians should not lose hope," Soko explained.

However, Soko noted that the project was being undermined by various factors. Chief among these was that communities still discriminated against PWAs.

"This makes it difficult for people to declare their sero [HIV] status," he said.

Another was that in some instances community members demanded to be paid allowances for attending project meetings. "The problem is escalating and the resources ... are becoming too little," Soko said.

Despite these challenges, he said the project's volunteers were very dedicated.

"What it means is that they are serving their neighbours, they're serving their brothers and relatives," Soko said.

Source: http://www.irinnews.org/AIDSreport.asp?ReportID=1400

Congo-Kinshasa: Solidarity Against Aids

2006-11-03T15:07:00.000+07:00

By, UN Integrated Regional Information Networks, October 10, 2006

The NGO ACS/Amocongo provides care and support to thousands of people living with HIV.

After losing her sister to HIV/AIDS two years ago, Kimya, an HIV-positive mother of four, felt she had no choice but to take in her sister's children, saying it was "the obvious thing to do - it is solidarity".

"At first the two children were placed elsewhere [with other family members], but it didn't work out," she said in her single-roomed shack in Lubumbashi, capital of the southeastern province of Katanga in Democratic Republic of Congo (DRC).

Despite her poor health and bleak financial position, Kimya, 55, (not her real name) decided that the best place for her nieces was with her. "I was really obliged to do this. My family had abandoned us - they don't even visit us any more," she said as she cradled her crying three-year-old on her lap.

Kimya discovered she was HIV positive in 2002, just after her husband died. "My husband's family came to see me to suggest that I be tested for HIV. I was tested and the result was positive," she said. "I was very unhappy - I had heard people talking about AIDS at the church and I thought I was going to die immediately."

Community Action Association Against AIDS/A Better Future for Orphans (ACS/Amocongo), a local nongovernmental organisation (NGO) founded in 1993, runs voluntary testing centres in nine of the country's 11 provinces, and provides schooling, feeding and psychological counselling to about 8,000 AIDS orphans. Kimya was tested at a centre near her home.

In 1997 ACS/Amocongo decided to expand its assistance to include the families and caregivers of AIDS orphans, on condition that the orphans were not abandoned.

"We want to prioritise African solidarity by telling these enlarged families to give these children affection and a roof over their heads, and we will do the rest," said Dr Jo Bakualufu Ntumba, in charge of follow-up and evaluation in ACS/Amocongo programmes in Kinshasa, the DRC capital.

The United Nations Children's Fund (UNICEF) estimates that after almost ten years of conflict, the DRC has 120,000 HIV-positive children, and 800,000 have lost one or both parents to the pandemic.

Last year, in an initiative financed by the Global Fund to Fight AIDS, Tuberculosis and Malaria, ACS/Amocongo started providing free antiretroviral (ARV) treatment to 2,100 people living with HIV/AIDS. The NGO has a total of 6,600 HIV-positive people on its books in 20 treatment centres throughout the country.

Kimya is one of the patients whose health has improved since she started treatment, but she is worried about her youngest child, who has become HIV positive - the only one of the six she looks after to be infected. ACS/Amocongo has been providing antibiotics to limit opportunistic infections.

Paediatric ARVs are not available in Lubumbashi but, with the help of the Global Fund, ACS/Amocongo is hoping to receive the first batch before the end of the year.

According to Dr Lucien Kalenga, who heads the programme in Katanga Province, 300 of the 1,500 orphans ACS/Amocongo looks after in the province would be eligible for this life-prolonging treatment. "It is difficult to give ARVs to the mother and not to the child," he said.

While they wait, Kimya's priority is to find a way to feed her family. "They are sad because they are hungry. They haven't eaten today," she said wearily.

Source: http://allafrica.com/stories/200610110007.html

Community-based health volunteers key in fighting HIV/AIDS

2006-10-10T16:35:00.000+07:00

A Red Cross volunteer lights candles forming a ribbon, the symbol for solidarity with AIDS patients in Bujumbura, Burundi on 25 March 2006. (AFP/File/Dimitar Dilkoff)Johannesburg, South Africa: On the eve of World Health Day (7 April), the International Federation of Red Cross and Red Crescent Societies highlights the growing importance of its volunteers involved in community health activities, especially activities related to HIV/AIDS.

According to the World Health Organization, there is an estimated shortage of four million health workers worldwide, with severe deficiencies in low-income countries and rural areas. Red Cross/Red Crescent volunteers are playing a key support role and increasing the skills of people living with HIV and families for self care, especially in places where national health systems do not respond adequately to the needs of the local population.

The work of volunteers is being highlighted during a Symposium in Johannesburg on April 6-7 about integrated HIV/AIDS community home-based care. The event is organized by the International Federation in partnership with 10 National Societies in Southern Africa. “The Red Cross Red Crescent has accumulated a great deal of experience in home-based care programmes”, says Bernard Gardiner, manager of the Global HIV/AIDS programme for the International Federation in Geneva. “As a result, there has been a demand from other organizations for the Red Cross Red Crescent to share their experiences and knowledge,” he adds.

The Red Cross Red Crescent comparative advantage in care programming is due to its effective use of the widespread network of trained community-based volunteers who provide care and support services to the chronically ill and family members in their homes, which is also a valuable support to overburdened health facilities. The same community-based volunteers also give advice on HIV/AIDS prevention, hygiene, food and nutrition, water and sanitation, prevention of tuberculosis and malaria and adherence to treatment. They are also involved in anti-stigma campaigns with people living with HIV/AIDS.

At present, home-based care programmes run by National Societies in Southern Africa are reaching 50,000 people and approximately 85,000 orphans and other children made vulnerable by AIDS. The Johannesburg Symposium will see the launch of the new five year HIV/AIDS strategy in the region, further promoting home-based care and treatment support. “It is time to share the knowledge and experience which has been built up in Southern Africa and to champion the work of the committed and devoted Red Cross volunteers,” says Françoise Le Goff, Head of the International Federation’s regional delegation in Harare.

Source: http://www.worldvolunteerweb.org/news-views/news/community-based-health-volunteers-key-1144327542/lang/en.html

Namibia: At Home With a Home-Based Caregiver

2006-10-04T11:37:00.000+07:00

OUT of love for her community and the urge to help where she can, Adriana Garises (30) did a home-based care course with Catholic AIDS Action and the Namibian Red Cross in 2003.

"I saw the huge need to care for affected and infected people at home level, as the hospitals cannot accommodate the masses of people anymore," she says.

Besides helping at the Bernhard Nordkamp soup kitchen for orphans and vulnerable children every day and helping children with their homework, Garises visits 12 AIDS sufferers every day to make sure they are taken care of.

Her days are so full with helping others that she only comes home around 22h00 at night and has almost no time for her own family.

Garises lives in a small rented room, which is not big enough to accommodate her four children.
They are now living with their grandmother.

"The community need me and they phone at irregular hours and need counselling, so I leave the children with my mother and I know they are safe and well taken care of.

I visit them as much as I can though," she says.

The responsibilities of a home-based caregiver include giving counselling and spiritual support to AIDS sufferers, cooking and cleaning for them and even bathing them and doing their laundry.

If patients have children they also need to be fed and clothed and helped with their homework.
Home-based caregivers must be a pillar of strength not only for their patients, but also the patients' families.

"We also need to ensure that our clients take their tablets regularly.
Many think they are like Panados and once they feel better they don't have to take them anymore.

They do not realise that antiretrovirals are for life," says Garises.

Caregivers also talk to people about providing for their dependents after their death.

They encourage people to draw up a last will and testament, especially if they have children.

"I always discuss with my clients who is going to look after their children once they pass away, as often children are forced to live with relatives who do not care for them and then the child ends up on the street.

It is better for parents and children to sit down and discuss the child's future together," Garises adds.

Her duties do not end once a client has passed away, as she helps the family with the funeral arrangements, gives bereavement counselling and makes sure that the children go to school and are properly taken care of.

Garises says she concentrates mostly on the children, as they suffer the most when their parents are sick and they need somebody to talk to.

Her own brother was HIV positive and when he passed away it was a very difficult time for her and that was when she realised that there were many infected and affected people in her community who were illiterate and afraid of stigmatisation who needed to be educated and looked after.

"When I go home sometimes I am very tired and feel like I cannot do this anymore, but then I pray and realise that my community needs me, so I get up the next day and go to where I am needed," she told The Namibian.

Another volunteer worker, Bertha Sungelesi (31), is currently doing the course in home-based care at Catholic AIDS Action and is helping out where she can.

She hails from the North and has been HIV positive for 13 years.

Sungelesi says she has been helping HIV-positive people because she can speak their language and can speak from personal experience, seeing that she is HIV positive herself.

She is currently taking care of 16 people, three of whom have been abandoned by their families.
Sungelesi believes that the high number of suicides in Namibia can be attributed to HIV-positive people being abandoned by their families.

"I talk to the families and tell them how important it is that they support and love their positive people and so far two have been accepted back into their families," she says.

Sungelesi is currently writing a book titled 'I want to talk before I die', which she hopes to publish not only in her native Oshiwambo but also in English once she finds a sponsor.

She says when she first found out about her HIV status she wanted to kill herself too, but after receiving counselling she realised that she could help other people in the same situation.

The book will deal with her feelings and how she changed her life around from being depressed to leading a productive, positive-thinking life.

Source: Tanja Bause, The Namibian, September 22nd, 2006

Psychosocial support for children affected by AIDS

2006-09-21T11:48:00.000+07:00

Lessons from Thailand HDN Key Correspondent Team

Although medical treatment is clearly essential for children affected by HIV, ensuring their psychosocial well-being may be the most critical and urgent requirement. Because stigma and lack of sympathy around HIV results in exclusion and discrimination for many children, acceptance by peer groups and communities, and full participation in social life, are vital for the survival and development of these children. During the recent XVI International AIDS Conference (IAC) in Toronto, psychosocial well-being emerged as a central issue for children affected by AIDS, alongside paediatric care and treatment.

Activities or services that help to protect, support and promote the psychosocial well-being of children and families affected by HIV are essential to build the resilience of children to bear and recover from significant suffering, and enable them to overcome disadvantages and make positive contributions to society. It is widely recognised that this support is best provided by families and communities, where these children will be surrounded by people who love and care for them. Parents or caretakers need to be able to communicate effectively with affected children with regard to their medical issues, coping issues and understanding of the illness to help them to feel empowered and increase their self-esteem in overcoming their difficulties.

One project from Thailand, presented in the Global Village, uses art to allow affected children to communicate and express their psychosocial needs. The ‘We Understand’ group, established in 2002 in collaboration with the AIDS Access Foundation, Thailand Network of People Living with HIV/AIDS (TNP+), MSF-Belgium (Thailand) and supported by UNICEF-Thailand, focuses on understanding and helping children affected by HIV using arts and children’s participation as methodologies to develop psychosocial activities.

Painting camp is one of the activities that help the children to communicate about their pain, grief, anger, and sadness. The caregivers can learn about their problems through their pictures, as talking about these feelings is sometimes difficult for them and is a matter of trust. The children sometimes use painting to cope with the loss of their parents. For example, Kwaw, a child with HIV who lost her mother, drew a picture of her mother in heaven. Some of them also drew their hope as a dying tree turning to green and growing beautifully. To see some of the pictures created by these children, please visit www.weunderstand.org

Later on other activities such drama, music, and photography are offered according to the interests of the children. They are trained by professionals and some of the children have received scholarships to attend painting and music schools.

Their work has been exhibited and performed in public places to raise awareness and understanding about children with HIV and to show that they are capable, competent, and have the same potential as other children. According to the project manager, the exhibition is a great channel to reduce stigma for these children and increase their self-esteem. The negative attitudes toward these children as very sick and dying soon diminish. The children are happy to be recognised for their work and to be part of the solution. In addition, the art activities also help to create trust and build good relationships between project staff and the children, which lead to other developments in psychosocial well-being.

The We Understand group has extended its work in partnership with local non-government organisations, hospitals, families, and PLHIV (people living with HIV) groups to respond to the children’s material and emotional needs, antiretroviral (ARV) treatment and care, and education. Once a year, a family camp is conducted by the group to monitor and follow up on the psychosocial issues of these children. Case conferences are conducted to study the needs of the children.

Children participating in this project are reported to show signs of improvement – feeling more confident to talk to people, developing their self-worth, and improving adherence to treatment. This project has now been replicated in several provinces in other parts of Thailand. The future challenges of the group are: (1) To work more with community leaders to address the issues of psychosocial well-being and long-term support; (2) To remove the self-stigma of these children; and (3) To replicate the project throughout the country.

It was refreshing to hear about this innovative project at the conference in Toronto and we look forward to seeing more comprehensive approaches that address the psychosocial well-being of affected children at the 2008 IAC in Mexico. Project models to improve the psychosocial well-being of children affected by AIDS, including stigma reduction, should be widely promoted.

HDN Key Correspondent, Thailand
Email: correspondents@hdnet.org
Website: www.healthdev.org/kc

Source://SEA-AIDS [sea-aids@eforums.healthdev.org]

Namibia: Home Based Carers Get Training

2006-02-02T06:57:00.000+07:00

Feb, 1, 2006, By Surihe Gaomas, New Era

Windhoek -More than 16 000 Namibians have succumbed to HIV-related complications since the first case was detected in the country in 1986.

With over 250 000 people infected with the virus, it is clear that HIV/Aids is the leading cause of death in Namibia.

Even though the Government has over the years put in place programmes to address the HIV/Aids pandemic by providing anti-retroviral treatment (ART) and through the Prevention of Mother to Child Transmission (PMCT), more still needs to be done by ordinary Namibians to take care of those infected and bedridden in their communities, particularly at the grassroots level where hospitals and clinics are far between.

Close to 30 Home Based Carers from the Andara community in the north are undergoing a four-week training of trainers course being held by the Johanniter-Hilfswerk in Namibia.

Though a separate week-long course was already held in Mukwe in the Kavango Region from November until December last year, the remaining three weeks of training in home-based care
officially started in Windhoek yesterday.

Officially opening the course for the Mukwe Development Group, the Deputy Minister of Information and Broadcasting Raphael Dinyando stressed the importance of such training, which he felt will go a long way in addressing the pressing challenges associated with the pandemic.

"If HIV/Aids cannot be brought under control Namibia might be locked in a vicious cycle, because HIV/Aids has got an impact on the health sector, households, the youth, education, life expectancy and on the economy," Dinyando stated.

He appealed to young home-based caregivers to remain proactive and effective in carrying out their work in rural communities, while at the same time breaking down traditional taboos that are associated with sex.

Dinyando also expressed concern over the fact that anti-retrovirals are still too expensive for most of those infected.

However, this is being addressed through the Government's rolling out of the ARVs at different state hospitals in the country. "The budget of Government will spend more on HIV/Aids, rather than on other social concerns like sanitation. Our big budget will therefore go towards HIV/Aids," he added.

Speaking at the same occasion, Regional Councillor of Windhoek East Constituency Mwadina Muashekele-Sibiya urged the participants to address the challenge of using the theory and skills they acquire in the course and turn it into action at an "unprecedented intensity and rate", making home-based care a top priority.

The entire training course is being sponsored by UNAIDS under the Small Grants Fund at a value of N$255 000.

During the next three weeks, participants will undergo training in counselling, care, positive living, Aids-related diseases like tuberculosis, sexually transmitted diseases and alcoholism and HIV/Aids.

Source: Allafrica.com

South Africa: Empower the Home-Based Care Workers

2005-12-29T10:29:00.000+07:00

by Lucas Ledwaba, Inter Press Service, December 11, 2005

JOHANNESBURG- Nombuso Mdluli, a home-based caregiver for people with AIDS, has a daily acquaintance with the suffering that HIV can inflict on its victims. For some reason, though, it is the plight of one particular man which haunts her.

"When I got to the room where he was lying in bed, I could sense he was not going to make it," she told IPS, describing events on the afternoon she was urgently called to attend to the patient.

"There was something about his eyes which I can never forget. He asked me for a cup of water, but as I was about to give him the water, he died," Mdluli added.

"The family members who were present wanted to comfort me, whereas I was the one who was supposed to comfort them."

The man was one of several patients assigned to her by a hospice in Soweto, a predominantly black settlement in South Africa's financial centre of Johannesburg which is grappling with the effects of the country's 21.5 percent HIV prevalence rate*.

On weekday mornings, she and the other 40 volunteer caregivers at Soweto Hospice set out to provide critically-needed support for persons who have fallen ill with AIDS-related diseases.

Like many other caregivers around the country, they receive a monthly stipend of about 40 dollars -- an amount which some argue bears no relation to the importance of their role in a country where health services are struggling to provide for people's needs.

"Home-based care is probably the only workable solution in the South African context, but it should not be regarded as a cheap solution. The state does not provide nurses who provide home-based care, so they should really empower the home-based care workers," says Chloe Hardy, a paralegal at the Aids Law Project: an organisation based at the University of the Witwatersrand in Johannesburg, which assists HIV-positive persons in combating discrimination.

"The main problem is that there's very little funding for care workers. Most of them are doing it because they are unemployed, and also because they feel a sense of responsibility to their communities, which are affected by HIV/AIDS," she adds. "We feel that if this is going to be government's cornerstone of dealing with the AIDS issue, then there needs to be adequate funding and remuneration for home-based care workers."

However, Solly Mabotha, a spokesman for the Department of Health, says the matter is receiving attention. "The department has embarked upon the Community Caregiver Programme, which aims at creating career paths for these caregivers through the provision of comprehensive and generalist training," he told IPS.

Once a caregiver has gone through the training stipulated by this programme, they will be entitled to almost 160 dollars a month until they find permanent employment. "This training programme will enable them to provide more comprehensive care...The training, however, does not make them dispensers nor equip them to obtain licences to prescribe medication.

This is left to the professionals such as nurses, doctors and pharmacists," says Mabotha, noting that there are currently about 1,500 home- and community-based care organisations countrywide.

For Mdluli, an increase in stipend would be welcome. "But even if they don't increase it, I will still continue. The eyes of that man, I will never forget them. You know, it was as if he was saying, 'Thank you for being there'," she adds.

"I've seen people getting terribly sick and weak, then getting much better again. They end up being like family. One develops a bond with them because you wash them, you are there to talk and to listen whenever they need you. So, I don't see myself quitting what I'm doing now."

In the four years that Mdluli has been volunteering at Soweto Hospice, she has seen a softening of attitudes towards people and families affected by the pandemic -- although the extent of anti-AIDS stigma remains worrying.

"Sometimes you found that when a person disclosed his status to his family, they would hide the person in a back room and deny them food and -- in some cases, where the sick person was staying with extended family -- they would also victimise his children," she says.

"But a lot has changed now. People understand the disease a lot better and we also teach the families how to take care of the patients." At present, Mdluli is in charge of 13 patients (she also teaches at a day care centre for children affected by HIV/AIDS for a week every month).

"My visits usually start with 'category three' patients, those who are bedridden. I do bed bathing, dressing of calluses and sores and provide counselling. Most of the people I visit are extremely poor, and in most cases cannot even manage taxi fair to a hospital," says Mdluli.

"When a patient is in need of medical care or needs medicine to be prescribed, then I contact one of the nurses at the hospice who will do a house visit." The Soweto Hospice has five nurses who, on average, see 100 patients each week.

South Africa's government began a programme to provide free anti-retroviral drugs (ARVs) in November 2003. However, officials have been accused of a lack of urgency in ensuring that those who need the medication to combat AIDS-related illnesses do in fact get it.

According to the 'AIDS Epidemic Update 2005', issued by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organisation, the vast majority (85 percent) of South Africans in need of ARVs were still not receiving them by mid-2005.

South Africa currently has world's the highest number of HIV-positive citizens -- over six million. * This estimate is according to UNAIDS; it refers to adult HIV prevalence (ie: prevalence amongst people aged 15 to 49). (END/2005)

Home Based Care an effective response to HIV/AIDS

2005-11-07T08:04:00.000+07:00

Daily News Online, Botswana, 04 November, 2005

PHUDUHUDU - Residents of Phuduhudu settlement in Kgalagadi North are proud of the home based care programme, which they started some years ago.

Cynics had doubted whether it would succeed, but to their surprise and everybodys the committtee has not only survived, but is going strong. One of the longest serving members of the committee treasurer Kebonyemang Mosolomane said that it has not been been smooth sailing for the 10-member committee.

She said they managed because of their resilience and love for fellow human beings. Mosolomane said they make home visits to check on and assist the sick. As members of the committee we had to lend a hand to the terminally sick and those not able to do anything for themselves such as the elderly and the disabled.

The countrys home based care programme is regarded as one of the most effective intervention measures in its response to HIV/AIDS scourge. It was hatched when the countrys hospitals and health facilities could not cope with demand due to the rapid rate at which HIV/AIDS cases were increasing.

Home-based care programme is an important step towards improving the spirit of care-giving, it also harnesses community contributions and reduces premature deaths. Mosomolane explained their efforts have made a difference in the lives of HIVAIDS patients.

Also, the ARVs that are given to the patients have decreased mortality in Phuduhudu. Mosomolane said they are also doing their best to promote public awareness of sexually transmitted diseases, including HIV/AIDS.

Phuduhudu home-based care programme is under the auspices of the Hukuntsi Sub-district health team. In adition to providing community-based care support, the committee is involved in a number of community projects.

Mosomolane, however, lamented lack of support from some residents who neglected their sick and are in the hands of the home-based care members. Other families have joined the crusade to help the home-based care members.

Some committee members and other care-givers feel overwhelmed by the magnitude and multiplicity of the tasks they have to perform. Some members are exhausted and depressed because of seeing the terminally ill who are neglected by their families. Problems they encounter include lack of money for projects, a plot for agricultural purposes, and protective clothing.

Apart from the funds from the district home-based care coordinator, the home-based committee members raise funds for their projects. According to Mosolomane they raise funds through several activities to augment the little they get from the council.

We usually organise concerts to raise funds and we do not wait for the money from the council, she says, adding that they were able to build two houses for some destitute persons through the money raised from concerts and sengaparile sales.

She also cited inadequate support from the village development committee (VDC) as something that inhibits progress. If they had full backing Phuduhudu home-based care would be flourishing.

VDC ke yone palamente ya motse ka jalo, e tshwanetse go tsenya letsogo mo tirong e ya boithaopo, she argued.

Of the remarkable achievements that the committee has brought to the people of Phuduhudu, Mosolomane said they have raised hope where there was none and that they have also brought faith to the families of the sick because the way they handle the sick and attitudes towards their sick have improved.

They have also built two houses for the destitute in the settlement. Another outstanding project is the flourishing vegetable garden, which benefits all members of the settlement, especially the sick.

One of the beneficiaries, Bakgatla Thase, now boasts of a one-roomed thatched roundavel. Before the generous efforts of the committee the old and disabled used to stay in a makeshift house.

Mosomolane said that it took three months to construct the house and that with the support the villagers, it was easy to complete it on schedule. Though it was difficult to comprehend what the old man was trying to tell reporters who visited his place, he was all smiles. Ke ne ke sitwa, ke bolawa ke serame mme jaanong ke na le fa ke robalang teng, was all he could say.

Boemo Segwagwa hailed the good deeds the home-based care members have done in Phuduhudu. He said without their efforts many people would have lost their lives through lack of support by their family members.

Source: Daily News Online, http://www.gov.bw/cgi-bin/news.cgi?d=20051104&i=Home_Based_Care_an_effective_response_to_HIVAIDS

Care's Home Based Care Working Wonders in HIV/Aids Fight

2005-07-28T08:32:00.000+07:00

By Yuyo Nachali-Kambikambi, The Times of Zambia, July 27, 2005

WITH the onset of the HIV and AIDS pandemic and the ever-increasing demand on health personnel to meet the needs of the chronically ill, it has become necessary to look at alternative approaches to care and support that encourage preventative health seeking practices for example positive living and also help to decongest the over-crowded health centres.

Home-Based Care, now popularly known as HBC, is a concept that is now being encouraged everywhere in the world, a system that provides prevention, care and support services in the home environment to meet the overall needs of people suffering from prolonged illnesses.

In a typical Zambian setting, families, nuclear and extended alike, have always provided care for their loved ones in times of illness. However the scale of the HIV pandemic has caused huge economic challenges and tremendous strain on family careers.

The loss of labour and cash income as well as the additional costs of providing medication are reducing families' capacity to provide nutrition, education and health care for their loved ones.
In addition, the nature of AIDS means that caring requires specific skills, knowledge, equipment and access to drugs which families do not necessarily have. In such circumstances, external support is badly needed to lessen the physical and emotional pain, and also help families avoid destitution.

Against this background, CARE International in Zambia has launched a Home Based Care (HBC) programme as part of its Programme Partnership Agreement (PPA) with DFID. The programme will focus on rural areas, which tend to be undeserved, and will provide support to households affected by chronic illness by building on the existing strengths of the family and the wider community in a given area.

The objectives of the programme are to: enable patients to live in dignity throughout the course of their disease, empower care givers to provide quality care, and provide surviving parents and guardians with knowledge and skills to take better care of themselves and the children in their care. It is hoped too, that the interventions will assist some chronically ill patients regain their strength and return to productive activities.

Positive Living is central to CARE's HBC model and addresses the total life of a person living with HIV and AIDS, inspiring hope and a greater sense of control over the disease progression. The model has three components: care for chronically ill patients, care for the care giver, and community awareness and prevention.

CARE's HBC programme will take place in seven districts predominantly in Eastern and Southern Provinces, which have the highest HIV prevalence rates outside of the urban centres of Lusaka and Ndola.

The programme aims to reach 15,000 chronically ill patients in the following districts: Petauke, Katete and Chipata in Eastern Province; Livingstone, Kazungula and Kalomo in Southern Province; and Kabwe in Central Province.

Approximately, 4,000 volunteer care supporters will be trained to work in the seven programme districts. These volunteers will conduct regular home visits to ensure that appropriate nursing; medical and emotional support is given to patients, as well as HIV education and assistance with future planning for children and other dependents.
HBC kits with basic medicines and personal hygiene items will also be provided to volunteers to help them provide pain relief and symptom management for patients.

The programme, which was officially launched in July 2005, will seek ways to increase the working relationships between government and NGOs by working through already existing district health structures. In particular, the DHMTs and health centres will be key partners in supervising and monitoring programme activities.

CARE's HBC Project Manager, Maureen Mubanga is excited about the programme. "The difference with this particular project is that it is not only looking at the HIV and AIDS infected and affected like most do but we are deliberately looking at all chronically or terminally ill patients who need love, support and encouragement," Mubanga said.

Mubanga admitted that care giving can be a stressful job and said that care and support for the care givers themselves is imperative. "We hope to have regular events to bring together volunteers to provide them with new information, as well as a space to share experiences from the field and learn from each other," Mubanga emphasised.

Adding: "CARE will use a community based approach for its programme to help volunteers overcome transportation problems in remote rural areas. Each volunteer will work within a maximum radius of 5km covering between 25 to 50 households thus making it much easier for them to care for the chronically ill."

The programme also has a primary health care component, which aims to increase access to preventative health care such as bed nets for malaria and chlorine for safe drinking water. Such measures help increase the resilience of people living with AIDS to opportunistic infections which can seriously weaken their health and ability to work.

Ultimately, through the HBC programme, CARE International-Zambia, hopes to create a sustainable delivery mechanism for home based care in rural areas that provides support along the prevention to care continuum to patients, families, communities and volunteer care supporters to enable them to mitigate and cope with the impact of HIV and AIDS and other chronic diseases.

(The author is CARE International Zambia-Programme Partnership Agreement (PPA) Information and Communication Officer).

Source: AllAfrica.com

Communities play a vital role in promoting ARV adherence

2005-06-14T07:51:00.000+07:00

(This is an HDN KC report from the 2nd South African AIDS Conference Durban, South Africa, 7-10 June 2005)

The WHO target of providing antiretroviral (ARV) drug treatment to three million people living with HIV/AIDS in poor countries by 2005 (‘3 by 5’) is falling far short of the mark in many places This is especially so in South Africa, where – according to the country’s Minister of Health – around 53,000 patients have been enrolled in treatment programmes to date.

With the 3 by 5 deadline looming, there are bound to be attempts to dissociate from what looks like an increasingly frail target. Reiterating similar comments she made during a UN General Assembly meeting in New York last week, the health minister took the opportunity to repeat that the 3 by 5 goals are not South African targets, and that the country would determine their own in due course.

As the political posturing persists, the daily reality is that millions of people are precariously waiting for effective HIV treatment and care services, and thousands are dying in the meantime. A further emerging concern is how to ensure that the chosen few who have been enrolled in ARV programmes remain on treatment.

There are no easy solutions, but as the conference proceeds this week it is becoming clear that there are additional resources that can be mobilised to assist. The community sector is reportedly still only consulted way down the implementation path, and particular when services begin to fail.

This was clearly demonstrated during a seminar organised by the Secure the Future initiative, where ARV country project reports were presented and discussed.

Success stories presented at the meeting showed that if communities are consulted and see the relevance of interventions early, then they will rise to the challenge, take ownership of programmes and find their own solutions to prevailing challenges.

So what are the key elements that ensure that communities are involved in treatment and adherence programmes?

Communities should be mobilised through awareness, advocacy and lobbying. Widespread understanding that ARV therapy can save the lives, but requires a lifetime commitment from the client, family and community, must be created. Fostering this kind of ‘treatment literacy’ among communities can only happen if an environment has been created that reduces HIV-related stigma and encourages acceptance.

If this can be supported then “the community becomes the advocate”, says Mxolisi Khutama of the ACHIVA project in KwaZulu Natal province – one of the areas of the country with the highest HIV prevalence.

This is can be achieved through community consultative meetings and adopting a multidisciplinary approach. It is vital to involve the private sector and facilitate collaboration and networking through establishment of appropriate local forums. Social marketing campaigns can also assist in the process.

Empowerment and development of clients, family members and the community through literacy workshops can also help to promote the necessary understanding among increasingly large numbers of people.

Psychosocial support can be created through the use of lay counsellers in the community, who can also encourage people to find out their HIV status through voluntary counseling and testing (VCT), and refer clients and families to health facilities – as well as provide on going treatment adherence counselling. Once more the selection of lay counselors from within the community facilitates local empowerment and community acceptance. Counselling is geared towards disclosure of HIV status, and during the assessment phase clients are encouraged to identify a treatment supporter to whom they are able to disclose.

Post-test clubs and support groups can be linked to VCT sites and provide valuable support to people infected and affected by HIV. Additionally, treatment buddies, who are people living with HIV and are successfully adhering to ART, can be used to help support newer clients.

The session also highlighted the importance of home-based services and support in maintaining adherence levels. It was reported that home-based care groups provide valuable support through home and follow-up visits. Care-givers provide treatment support and refer clients to health facilities for monitoring and treatment of side-effects.

Nutritional support can be provided through establishment of home and community gardens. This helps to ensure sustainability, promotes a spirit of self determination and partly alleviates immediate poverty.

Each of these key elements provides a sound basis for implementing ARV programmes with high levels of adherence, and also help the thousands of people who are waiting for treatment programmes to deliver on their promises.

As stated by Minister Manto Tshabalala Msimang, providing ARV treatment is not just about numbers of clients on treatment, but equally about the quality and comprehensiveness of the range of services that are provided.

As South Africa strives to meet its needs for AIDS-related care and support services, programmes must address all of these elements, take cultural practices and diversity into consideration and involve all stakeholders. Communities are doing more than just waiting – they are actively preparing for the day ARVs will be made accessible – whoever’s ARV target happens to be on the horizon.

HDN Key Correspondent Team
Email: correspondents@hdnet.org

(June 2005)

Doctor famous for helping in Haiti, Peru and Russia is now heading for Rwanda

2005-05-21T01:45:00.000+07:00

In the deeply rural and desperately poor reaches of interior Haiti that Dr. Paul Farmer has made his home away from Harvard, people sickened with HIV are regularly brought back from the brink of death when they visit his clinic and begin taking antiviral drugs.

"It's a 'Lazarus effect.' That's what the people call it,'' said Farmer, the renowned physician and medical anthropologist whose tireless work in Haiti, Peru, the jails of Russia and the slums of Boston has set a standard for the care of AIDS and tuberculosis among the poor and dispossessed.

Last month, in partnership with the private foundation of former President Bill Clinton, he launched a new program to bring rural health care and AIDS treatment to remote eastern Rwanda -- a nation rising from a ghastly genocide a decade ago.

"We've been wanting to go there for a very long time,'' said Farmer, relaxing Friday at the Berkeley home of a friend before delivering this morning's commencement address at the UC Berkeley School of Public Health.

The 45-year-old Farmer, described as "a man who would cure the world" in a profile of his work by Pulitzer Prize-winning author Tracy Kidder, was also in the Bay Area to receive an award Wednesday from Global Exchange, the San Francisco human rights advocacy group.

"He's an uncompromising critic of war, poverty, violence and oppression, because all of those things affect his patients' lives,'' said Global Exchange spokeswoman Andrea Buffa.

Like Haiti, Rwanda is rugged and rural, impoverished, with a history of political instability. An estimated 500,000 Rwandans are infected with HIV, many of them women who were gang-raped during the genocide.

Despite a desire to bring his work to Africa, Farmer has previously avoided a major commitment. He feared making a promise he could not keep. "To work in a very poor country, like Haiti, or Rwanda, you need lots of resources, '' he said.

But publicity from Kidder's 2003 book, "Mountains Beyond Mountains," drew additional attention to the work of Partners in Health, the Boston charity that finances Farmer's work. That acclaim, commitments from wealthy American donors, and a blossoming relationship with the William J. Clinton Foundation based in New York conspired to bring Partners in Health to Rwanda.

Farmer's team is already settin

Live positive for HIV+ kids

2005-05-09T11:28:00.000+07:00

Mid Day Mumbai (India)
May 8, 2005

At a fair held to celebrate their patron saint, Sister Shanti of St Catherine’s Home blindfolds a girl with her hands, coaxing her to pick coins out from a tub of water. A line forms behind her – some of these girls are HIV+.

There’s a risk of injuring themselves, of catching a cold from their best friends.

And yet there is no separation, no segregation in this home for AIDS orphans. “We can’t keep them in isolation,” says a mildly-shocked Sister Udaya, the home superintendent, “They have been living together all these years and are so used to it.”

It’s vastly different from the disturbing trend that has hit the headlines – of AIDS patients taking their lives to end the crushing depression brought on by its stigma, its fatal nature.

A sweeper hung himself in Mulund, two patients from the HIV+ ward at J J Hospital jumped from its fifth floor, both suicides a day apart.

Even while debates grew over the need for counselling AIDS-affected patients, St Catherine’s Home has devised its own antidote to the disease – regular doses of care and support.

This Andheri-based home was the first one for AIDS orphans in the country, for those children abandoned by relatives and friends once their parents died of the disease. Sister Shanti, a trained nurse, helped with the first HIV+ child who came in 1996.

“There was a lot of fear when we started in September 1996 because no one knew how to look after the children. Doctors said we were wasting time because they would die, but we wanted them to die with dignity,” says Sister Shanti.

The home decided it would not put the child on the anti-retroviral treatment usually prescribed for HIV+; instead the nuns devised a Care and Support Programme.

Relying on normal medicines that treat general ailments, the home chose to closely observe the infected children and treat them immediately.

For the sceptics, the home has lost only two children to the disease in ten years. It has had 48 children – the boys have been transferred as the home is for girls – and at present houses 31 HIV+ children.

The home even presented a paper on its developed method at the college of social work. Says Sister Udaya, “We rely on nutritional, emotional, psychological support and stigma reduction. It’s an all-round, holistic approach.”

The children stay in a separate hostel, equipped with kitchen, nursery and dispensary, but go to school with the rest of the home’s destitute, abandoned children.

“We have worked with the teachers, students, parents on stigma reduction. The other children are prepared – when there’s an accident and blood exposed, they know what to do. As for the HIV + child, she is told when she is able to understand.”

The HIV hostel is filled with sunshine – the dispensary lined with toys, weight charts motivate the smaller children to catch up, toothbrushes are carefully slotted against the wall and linen constantly changed. “It’s very costly – their nutrients, maintaining hygiene. They have three changes of nighties per day.”

In some cases, counselling has helped. Four-year-old Mary and Shivani came in as depressed babies, but were transformed by constant touching and hugging. One six-year-old with Hepatitis B has also recently been adopted by a Swedish single woman.

“We encourage children to keep in touch with their parents as long as they can,” says Sister Udaya. Many children fear death after seeing their parents die.

“We tell them that you will get the care that your parents never had. And at the end of the day, it’s death like any other,” points out Sister Udaya.

(By: Shradha Sukumaran)

Men in demand for home-based care in Zimbabwe

2005-05-06T10:53:00.000+07:00

Varaidzo Dongozi
Zimbabwe Red Cross, Harare

While home-based care is viewed as one of the more successful ways of fighting stigma against people living with HIV and AIDS, it would have more impact if men took a more active role.

The community-based approach has proven to be a cost effective way of caring for people living with HIV and AIDS, with its strength deriving from the fact it is a community driven activity.

Many countries in Sub-Saharan Africa are scaling up home-based care services to people living with HIV and AIDS. Research has shown that community-driven initiatives increase community acceptance and reduce stigma.

Infected people have the opportunity to be looked after by their families and they continue to live in a family environment while they are being cared for.

The major challenge of the home-based care approach however was that it increased the burden on women, whom society viewed as the traditional caregivers.

“Most programmes in Zimbabwe include women as caregivers. This means that women at some point are forced to neglect some of their routine activities, in order to give this care”, said Emma Kundishora, Secretary General of the Zimbabwe Red Cross Society.

Phillipa Zengeya, a woman working with people living with HIV and AIDS in the Zvishavane project, one of the Zimbabwe Red Cross Society home-based care projects, in the Southern part of Zimbabwe, agreed that more women than men were willing to engage in care giving work.

“The problem that we are facing is that women are involved in care-giving work but they don’t make most of the decisions which promote the acceptance of HIV and AIDS and people living with HIV and AIDS in their community,” she said.

She also mentioned that because care-giving was viewed as the responsibility of women, it was not being given the prominence and respect it deserved considering its impact in the community.

Kindman Dimbo, a supervisor of the Zvimba home based care project, explained that care-giving was not an easy task for men. “For a man care giving is mostly associated with raising income for the family so it certainly is not a natural thing for man to do,” he said.

If men participate more in home-based care, it may reduce the stigma that is often faced by people living with HIV and AIDS. Their involvement would send positive signals since many people take more notice of what a man says than a woman.

“So men should use this to influence people’s response to HIV and AIDS,” said Dimbo said.

In recognition of this, the Zimbabwe Red Cross Society is making efforts to increase the number of male care facilitators in its 27 established home-based care projects. To date only 10 per cent of the Zimbabwe Red Cross Society’s 1,042 home-based care facilitators are men.

Dimbo explained that men could play a significant role in promoting community ownership of HIV and AIDS projects as a way of ensuring sustainability of the projects.

“As the opinion leaders in most communities, men can instil a sense of ownership because in their communities men are identified with a lot of importance. Therefore people will also view HIV and AIDS as an important issue for the community,” he said.

Acceptance of caregivers among both men and women has already proved to be high in areas where men have participated in giving care. One of the strengths of male involvement was that communication among men on HIV an AIDS had increased.

David Mukasa, a Uganda Red Cross volunteer and a man living with HIV, has experienced at first hand how significant of the involvement of other men can be.

“During the time when I was trying to accept my HIV-positive status, there were moments when only another man was able to understand my feelings of hopelessness and to console me,” he said.

This was because when he was too sick to provide for his family, it was difficult for him to view himself as an adequate head of the household.

“When I could no longer provide for the family, I felt useless to my family and it was only when other men who had gone through the same experience counselled me, that I realized that it was a phase that would probably pass when I became well again,” he said.

Although greater participation of men in giving care is vital, ensuring it happens will be a huge challenge.

“The obvious feeling within our culture is that men do not need to give care because women are there to do it. It is difficult to ask men to engage in ‘soft’ roles that are usually reserved for women as this is seen as a sign of weakness,” Dimbo points out.

[Published on 3 May 2005; Source file here]

Building support for people living with HIV/AIDS in Manipur

2005-03-14T18:21:00.000+07:00

Manipur, a small state in the north-east region of India, lies in close proximity to the “Golden Triangle,” a centre of the international drug trade, and has a border with Burma. It shares with other countries in the area rampant drug use, military action against the drug trade and the marginalisation of drug users, not to mention the added epidemic of HIV/AIDS fuelled by these factors.

The strong moral views of Manipur’s people have reinforced reactions to people with drug-related HIV/AIDS: criminalisation, ostracism, stigmatisation and rejection. Most HIV/AIDS related cases and issues are seen from the perspective of drug use.

The first HIV/AIDS cases were detected in Manipur in 1989, from a cluster of blood samples collected from injection drug users (IDUs). Since then AIDS has become a public health catastrophe. The latest epidemiological report released by the Manipur State AIDS Control Society (April 2004) puts the number of HIV infections at 17,232 of a total 108,787 blood samples screened, but poor reporting and the lack of proper monitoring tools make it hard to arrive at the exact number of people infected with HIV/AIDS. Most health care workers and service givers in the drugs and HIV/AIDS field agree that the numbers are much higher than those estimated and reported.

The public health infrastructure of Manipur is minimal, and access to the available services is heavily curtailed by poor transportation and communication facilities. A number of private clinics and hospitals cater to the better off. There is thus a huge gap when it comes to drugs or even HIV/AIDS related services in Manipur. There are rampant cases of stigma and discrimination towards people living with HIV/AIDS in the health care system.

Yet Manipur has developed a system of what can best be described as “peer driven responses”. There has been a response from the community of those affected by drug use and/or HIV/AIDS, which has sustained a strong and positive force. The lack of professional skills, finances or even infrastructure notwithstanding, this small state is home to a throbbing pulse of shared experiences and expertise that help keep people living with HIV alive. The lack of proper documentation and publicity skills, however, means that these grass roots endeavours are not properly acknowledged.

There are many living examples of life-extending treatment which have been in place for quite some time and have nothing to do with provision of anti retroviral drugs. These include the way that drug users have rallied and come together to render services covering emotional support, counselling, referrals and linkages to drug related services and care support programs (detoxification, rehabilitation, health related care including home-based care etc).

There are also the various self-help groups which are formed by different peer groups (widows of drug-users, people living with HIV/AIDS, ex-drug users), that give avenues for skill-building exercises for basic sustenance through vocational training in areas such as embroidery, wool knitting, tailoring etc for women, and mushroom cultivation, poultry and pig-raising for men.

These self-help groups ensure the presence of peers in service settings, as counsellors, outreach workers, and care providers. The strength gained through the strong grass-roots activism that is so inherent in the way those affected by drug use and HIV/AIDS have come out as program implementers is shown in their ability to negotiate with “professional” HIV/AIDS related service givers and funding agencies.

The members of these groups have a certain group dynamics among themselves: sharing felt needs and issues, networking with related agencies, training, discussions and small income generation schemes. Self-help group members keep aside appointments for formal meetings and discussions (mostly twice a month) where they plan forthcoming activities and share concerns related to their health. Small amounts of money, ranging from 10 to 20 rupees (less than US$0.50) are put in as subscription fee at every meeting, which is put aside for buying medicines for any member.

Meme (name changed) of Women Care Group, a self-help group of widows of drug users formed though a project undertaken by the Social Awareness Service Organisation (SASO) says: “Even the formation of our group did not happen easily. Because I was the widow of a drug user, my in-laws did not really encourage me to go out of the house. I was scared myself, thinking over what others would say. When I realised there were others like me and that we should get together, if only to share our problems, I came out.”

The same scenario of family disapproval happened with almost all self-help groups at their inception. To counter this, newly formed groups organised meetings at the houses of members by turns, so that family members could attend. This facilitated better understanding and gained support for the cause.

The strong presence of peer groups in Manipur and the dynamics that have emerged out of their interactions with one another has resulted in a unique response. There is a deep sense of empathy and shared understanding of the problems, needs and issues of each other that gives a much needed impetus to an otherwise slow response in such a resource-poor setting.

For example, home-based care began as a need-based service in Manipur rather than a programme-based activity. Much before the expression was used, the home-based care initiative started in the state when drug users who had developed opportunistic symptoms of HIV/AIDS were left with no avenues for treatment due to the justified fear of stigma and discrimination. It was then that peer groups came to the fore: visiting each other to give emotional and sometimes financial support, interacting with health care workers known to them – often negotiating and sensitising them to render their expertise.

The informal linkage that was forged between these peer groups of drug users and people living with HIV/AIDS on one hand and health-care workers on the other led to a dynamic end result: the latter became involved and interested in the issue while the former picked up skills like dressing wounds, medication of opportunistic infections and exposure to more knowledge of HIV/AIDS related information (for example, different antiretroviral regimens, drug resistance, availability of HIV-related services in the health sector)

As further substantiation of the life-extending treatment elements in ongoing community responses in Manipur, it may be pointed out that it was only in December 2003, that the then Minister for Health, Shushma Swaraj, announced the decision of the Government to give antiretroviral drugs free of cost to people in six HIV “high prevalence” states of India, including Manipur. This was keeping in line with the World Health Organzation (WHO) initiative of providing free antiretroviral drugs (ARVs) to 3 million people by 2005.

When the treatment program was rolled out in reality in Manipur in April 2004, it had a mere 300 places. The first reactions to the free antiretroviral program was about the number of beneficiaries, but there was an equal and vociferous response to the contents of the program: the fact that there was no consideration or room for people who had been on antiretrovirals on their own earlier, the lack of choice of drug regimens and alternatives in case of drug resistance, and even the criteria for becoming a beneficiary of the program.

Much before the launch of the free antiretroviral roll out, there were pockets of people who were negotiating with their friends based outside Manipur. Health-care givers in the state and medical representatives in order to procure antiretrovirals at subsidised rates and in bulk consignments which would be made accessible to their peer groups.

It was also these peer groups that took a stand regarding the shortcomings in the free antiretroviral roll out through the “GIPA Alliance”: a group comprising six NGOs and 28 self-help groups (of drug users, people living with HIV/AIDS, widows etc) that endorsed greater involvement of people living and affected with HIV/AIDS as a matter of practice rather than theory, by involving them in the process of rendering free antiretrovirals, recognizing their experiences and insights.

Since the dynamics of drug use and HIV/AIDS cannot be separated from one another in the state, it may also be pointed out that the strong peer-based response that exists in Manipur has in a way led to better linkages, more information flow about where to seek treatment and what works, and entry points to treatment services. And when a current drug user gets in touch with such a set up, he/she has the best information and back up support at hand.

Many NGOs have acknowledged the fact that the presence of peers fosters a sense of empowerment and inspiration to service seekers. Also, their experiences have led to better program provisions like including direct observation treatment for TB treatment, effective counseling, home detoxification, community sensitisation (with prohibitionist groups and other pressure agencies), the formation of self-help groups etc.

In a setting like Manipur, where there grass-roots based community responses have filled in the wide gap between what is projected and what is available and accessible, it is clear that the home and community responses to HIV/AIDS has extended and improved and the lives of people living with HIV. These existing initiatives need to be recognized, and it is imperative to build their capacity to scale up their effectiveness.

While the World Health Organisation and the Indian government are trying to make true on their treatment promises, the need of the hour is to strengthen community-based initiatives that are keeping people alive today.

HDN Key Correspondent
Email: correspondents@hdnet.org

(December 2004)