Subtitle: Ensuring that positive choices can be made about the care of children affected by HIV
Abstract: This report examines the impacts of HIV on the care choices of children, exploring how HIV affects whether or not children can remain within parental care, and on the alternative care options open to them. It is based on qualitative research in Malawi, India and Ukraine, and on a global literature review. It is in response to alarming global evidence on the rising numbers of children outside of parental care, and growing global recognition that responses to HIV should centre on increased support to families as the best means of providing care and protection for children
Download this report here (PDF, 1.54MB, 36pg)
Published by Tearfund 2011
Authors: Kara Greenblott, Isabel Carter and Debora Randall
This manual aims to help community and nongovernmental organisations working in the area of HIV to apply a ‘livelihoods lens’ to support their work.
Download this document here (PDF, MB, 84pg)
By Kristin Palitza
Subtitle: A Group of Men in the Eastern Cape Overcame Gender Stereotypes and Cares for the Sick and Disadvantaged.
Published by the Sonke Gender Justice Network
Sonwabo Qathula puts on his apron and starts peeling a pile of butternuts, while a pot of rice boils on the stove next to him. The 50-year-old is preparing lunch for poor and orphaned children who attend rural school in the Eastern Cape. When the meal is ready, he dishes out the food and serves it to the boys and girls. Later, he collects the empty plates and washes the dishes.
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This is a toolkit on how to mobilise communities for HIV/AIDS prevention, care, support, and treatment and impact mitigation. The toolkit takes communities through a process of starting together; assessing & planning together; acting together; monitoring, evaluating and reflecting together; and scaling up together. ‘All Together Now!’ is supported by ‘ Tools Together Now!’ Used together, these two resources provide a powerful way for organisations and communities to work more effectively together to address HIV/AIDS. Download (3.2MB)
Community-based Counselling for People Affected by HIV/AIDS is a 154-page, text that provides clear, easy-to-understand guidance on counselling. Its 13 chapters cover counselling techniques, substance abuse, mental health, grief and myriad other related issues.LARGE (160 pages, 4.49MB). Download.
HIV Prevention, Treatment, Care and Support - Training Toolkit . The World Health Organization (WHO AFRO), the International Federa-tion of Red Cross and Red Crescent Societies (IFRC) and the Southern Africa HIV/AIDS Information Dissemination Service (SAFAIDS) (2008).
This set of eight generic training modules on HIV prevention, treatment, care and support for community-based volunteers - consisting of 13 different parts - can be downloaded as PDF documents. The goal of training will be to provide participants with the relevant knowledge, attitude, problem solving and skills transfer capabilities required to assist and support community-based HIV prevention, treatment, care and support.
Download individually.
Global Network of People Living with HIV/AIDS. A manual for people living with HIV which has been hailed as a critical resource for the development and sustaining of grass-roots support and advocacy initiatives for people living with HIV/AIDS. It was designed to help people living with HIV/AIDS to become involved, establish or redirect their own groups, improve their capacities, or share their abilities with others. The manual is also useful for leading workshops and for trainers and facilitators who have been running groups for some time or who are helping others set-up their own groups. Download by chapter.
This guide helps communities to consider their response to the challenges brought by HIV and AIDS. Download PDF (930KB)
This toolkit provides a selection of 100 Participatory Learning and Action (PLA) tools which you can use for community mobilisation and HIV/AIDS. PLA tools are interactive activities which enable communities and organisations to learn together about HIV/AIDS in their community, develop a plan, act on it and evaluate and reflect on how it went. Download (2.9MB)
Mentors assist caregivers in various areas, including children's health, nutritional support, education and emotional wellbeing
Kisumu - Raising young children was not part of 65-year-old Angeline Abuga's retirement plan, but after her son and daughter-in-law died from HIV-related complications four years ago, she found herself the sole carer for their five children.
"I struggle to give them food," she said. "I try to guide them because they are teenagers and I don't want the girls to get into prostitution, and I don't want these young men to take alcohol. I lost their parents to HIV and I don't want the same fate to befall them."
Abuga has been lucky; she has a mentor, Lucy Adhiambo, who helps her navigate the challenges of raising her grandchildren. Adhiambo works for Speak for the Child, a programme of the NGO, Academy for Educational Development, which trains mentors to assist caregivers in various areas, including children's health, nutritional support, education and emotional wellbeing. The mentors make three visits per week to their households.
"When she comes, she talks to me on how I can teach the orphans good behaviour to help them live well. She reminds me when to take them to hospital, especially for the sick [HIV-positive] one and get drugs, and also keeping good hygiene," Abuga says of her mentor. "She also speaks to the children and she warns them of the danger of getting into things like prostitution or alcohol."
The mentors also monitor cases of child abuse at the hands of foster families, and provide legal training on inheritance rights for widows and orphans. Speak for the Child serves approximately 50,000 orphans and vulnerable children under the age of 15 in Nyanza, Coast and Western provinces.
The Kenyan government estimates more than 2.4 million children are orphans, half of them due to HIV/AIDS.
"Caregivers too can be sick or have health-related issues and because of the pressure to provide, they may fail to seek medical assistance - the mentors therefore not only act as a link between the health facility and the orphans but also for the caregivers," said George Ariya, programme manager for Speak for the Child.
One of the major areas of support mentors provide is guidance in disclosing HIV-positive children's status to them. Human Rights Watch in December 2010 urged the Kenyan government to provide more support and information for parents about how to tell their children they are HIV-positive.
According to Ariya, the mentorship programme has had a positive impact on the uptake of and adherence to antiretroviral drugs. It also provides transportation to health facilities for caregivers and orphans with HIV and TB complications.
"Mentors also help them form support groups and savings and loans schemes which help them meet the needs of the orphans they are looking after," he added.
According to Nyanza Provincial AIDS and sexually transmitted infections control coordinator Charles Okal, Speak for the Child's interventions are a welcome addition to the government’s efforts to tackle the problem of ensuring orphans and their caregivers are looked after.
"People talk about how the orphans lost their parents through HIV but what is not talked about and which is also critical, is that even the new caregivers... need constant support," he said.
There is no right age to disclose to a child that they are HIV-positive
Disclosing to a child his or her HIV status is an emotionally taxing process that a lot of care givers or parents tend to avoid or postpone. A courageous Soweto foster parent took a bold decision and disclosed to the foster child that the child has HIV.
Gogo Mazibuko*, a 57 year-old Soweto resident, is a foster parent to a 10 year-old HIV-positive daughter, Nobuhle*. Nobuhle’s mother died of AIDS in 2004 when she was only 2 years and 7 months-old. His father realised that he couldn’t take care of Nobuhle and asked uGogo Mazibuko to look after her. Nobuhle’s father also died of AIDS in 2007.
“I took her because there was no one else to look after the child. I was not going to sit around and watch a young baby die”, says Gogo Mazibuko.
When Gogo Mazibuko took the child in she had no idea that she was HIV-positive, but she did suspect because Nobuhle’s biological mother had died of AIDS.
“The child was very ill when she first lived with me. She had bed sores and people thought she was not going to live for long. I took her to Baragwanath Academic Hospital for treatment”, she says.
Gogo Mazibuko says she experienced a lot of difficulties when she first looked after Nobuhle. She says she didn’t know a lot about HIV at that time and often risked getting herself infected, too.
“I used to wash her bed sores with my bare hands, not knowing I had to wear gloves to protect myself. The doctor asked me to go for a HIV test and I was HIV-negative” says Gogo Mazibuko .
Nobuhle is on antiretrovirals. When she was eight years-old, Gogo Mazibuko decided to tell her that she has HIV.
“Firstly, I asked her if she knew why she was taking the medication, and she said ‘no’. I then told her. And I also told her that it was our secret and she should not tell her friends at school about it”, she says.
Gogo Mazibuko says Nobuhle took the news well. She believes it’s because the other kids at school don’t know about her status. So, she does not get teased or laughed at and she also gets support from her school principal and class teacher who are aware of Nobuhle’s HIV status.
“She has accepted it. She takes the medication on her own, but I always monitor her. I even told her that if she happens to bleed when she is playing with other kids, she must never let them touch her and she seems to have understood me”, says GogoMazibuko.
Nobuhle was lucky to get a foster parent who has taken good care of her health and had the courage to disclose her HIV status to her. Research is in favour of disclosure. Yet, disclosing to a child his or her HIV status, remains uncommon and burdensome for many parents and care-givers. Care-givers fear HIV-related stigma in the community they live in and believe by not informing a child of their status, they are protecting them.
“I think parents are concerned by a number of issues, including whether it’s the right time to tell a child, whether the child is old enough to know his or her status and how the child is going to respond emotionally… so, there are a lot of fears around it”, says Marnie Vojovic a Clinical psychologist from the Children’s Rights Centre.
Vojovic says many of the fears that parents or care-givers have around disclosing to a child its HIV status are baseless. She says the younger a child is the better the time it is to tell them. She adds that health care providers should work with care-givers or parents in ways that would help reduce their fears of disclosure and encourage communication between child, care-giver or parent.
“The care-giver and health care provider need to work together in terms of what approach might be appropriate for that particular child. But, obviously, the earlier the better. Certainly, when we’re looking at children going to adolescence, it’s too late,” she says.
Vojovic added thata number of children do suspect their HIV status. She says it’s suspecting, but not knowing, that causes so many psychological and emotional problems, as children might not be courageous enough to ask their parents or care-givers about their status.
“Children who know their statuses... There has been research done that shows they are less depressed, they have self-esteem and are able to develop the coping schemes they need to deal with stigma”, says Marnie Vojovic.
Emmah Ngidi, a social worker from Cotlands, a children’s care organisation, also weighed in on the subject.
“Biological parents are especially scared to disclose their child’s status because they feel guilty for infecting the child from birth. They fear telling the child that ‘I, as a mother, infected you with HIV’,” she says.
Ngidi says there is no right age to disclose to a child that they are HIV-positive. But she would encourage parents to disclose a child’s status when they are between the ages of 7 to 10 years.
“Telling a child their status at a later stage often results in the child getting depressed. The child tends to resent the parents for not telling them earlier. At the same time, a child will feel that, ‘I am a victim. I didn’t do anything wrong. ‘I am not sexually active’, because, mostly, they know you get HIV through unprotected sexual intercourse”, concludes Ngidi.
* Their real names have been changed to protect the minor.
South African Aids orphans: the grandmothers summit will discuss the impact of losing adult children, becoming head of a household and raising grandchildren as their own
Their collective wisdom is incalculable – and so is the collective burden they carry when families are torn apart by Aids.
Africa's newest special interest group is that of grandmothers. They will attend their first special conference this week to share experiences and call for international recognition of their uniquely difficult circumstances.
A summit of grandparents in the west might prompt jokes about bingo and dentures, but the inaugural African Grandmothers' Gathering, starting in Swaziland on Thursday, is a gravely serious affair.
More than 450 grandmothers from 12 African countries will meet to discuss the impact of losing adult children to Aids, becoming the head of a household and raising grief-stricken grandchildren as their own.
These forgotten victims hope to build a "solidarity movement" across Africa to make the case that grandmothers need targeted support from international donors and aid agencies.
"It's a lost group, a lost voice," said Philile Mlotshwa of Swapol (Swaziland Positive Living), which is organising the event in partnership with the Canadian-based Stephen Lewis Foundation . "They are the heroes yet no one has gone to them to say we recognise your efforts."
The organisers say it is time to heed the "indomitable and indefatigable" grandmothers who step forward to care for children, sometimes as many as 10 to 15 in one household. "They are holding together the social fabric of communities across the continent."
Mlotshwa continued: "Grandparents have always played an important role in solving disputes and as a source of knowledge. But now the younger generation is not there: people aged 29 to 49 are dying from HIV-Aids We are seeing a demographic of the elderly and the very young who've lost their parents."
She added: "Grandmothers are at the frontline of the HIV-Aids impact. They have to pick up the pieces and move on. They don't have time to grieve because the children need to be looked after. They are doing this without any income.
"They are not healthy people: they are sick with diabetes and high blood pressure. We are seeing women who are carrying on in spite of the challenges and the fear of what will happen to these grandchildren if they die."
Mlotshwa said she hoped the gathering would raise awareness of grandmothers' needs. "Various responses to HIV-Aids have been designed but not yet targeted at them."
The grandmothers are likely to seek international support for grief counselling, access to healthcare for themselves and children in their care, safe and adequate housing, economic security, safety from gender-based violence, raising community awareness and breaking stigma, support in raising grief-stricken grandchildren and access to education for children.
Grandmothers from Botswana, Ethiopia, Kenya, Malawi, Mozambique, Namibia, Rwanda, South Africa, Tanzania, Uganda, Zambia and Zimbabwe will be represented.
Among them will be "Mama" Darlina Tyawana, who has six grandchildren and is taking care of her late sister's grandchild in Cape Town. "There are a lot of grandparents raising children because the parents died from HIV," the 63-year-old said. "They are taking them to school, paying the school fees and carrying other burdens."
Tyawana, who works as a counsellor helping parents overcome the stigma of HIV, added: "We've got a battle because we don't only look after our own children. We also give a hand to the community and give education to other grandparents and people with HIV."
The African grandmothers will be joined by a delegation of 42 Canadian grandmothers from the Grandmothers to Grandmothers Campaign of the Stephen Lewis Foundation, which supports community-based organisations fighting HIV/Aids in Africa. The Queen Mother and prime minister of Swaziland will also attend the conference in Manzini, on from 6 to 8 May.
Stephen Lewis, chair of the foundation, said: "Grandmothers unsung heroes of Africa. These magnificently courageous women bury their own children and then look after their orphaned grandchildren, calling on astonishing reserves of love and emotional resilience."
"We find that AIDS has produced close to a million elderly people in sub-Saharan Africa who are living without the support of their sons, daughters or other younger adults."
Stanford, Calif. — The rise in AIDS death rates in sub-Saharan Africa has led to a burgeoning new category of neglected individuals — nearly a million orphaned elderly, or older adults living alone without the benefit of any caregivers, Stanford University School of Medicine researchers have found.
The researchers used existing data to develop the first estimates on the number of elderly individuals left alone, without any adult support, as a result of the AIDS epidemic, said Grant Miller, PhD, MPP, assistant professor of medicine, who is affiliated with the Stanford Center for Health Policy.
"We find that AIDS has produced close to a million elderly people in sub-Saharan Africa who are living without the support of their sons, daughters or other younger adults. Many of them also live with young children under 10 years of age, creating households with a missing generation of adults," said Miller, senior author of the study. "I think this probably understates the magnitude of the problem. We were unable to closely examine material living conditions or elderly health."
The study appears in the June 16 online issue of the British Medical Journal. Miller's co-authors at the Stanford Center for Health Policy are Jay Bhattacharya, MD, PhD, associate professor of medicine, and Eran Bendavid, MD, instructor of medicine.
Miller said he and his colleagues were stunned to learn that no one had taken a systematic look at this potentially large group of needy individuals.
"It just blew me away," he said. "We all know we have this problem with orphaned children. I wondered, do we have a similar problem with orphaned elderly? I searched a variety of publications and didn't find a clear answer."
Tim Kautz, the lead author of the study, said the idea for the project struck a chord with him, as he had spent a summer doing AIDS education in rural Tanzania. He lived there with a family that had taken in an unrelated, elderly villager who had no one else to look after him.
"I saw both the devastation caused by AIDS and the importance of the family in caring for the elderly. This project was a way to combine the two observations," said Kautz, a former Stanford undergraduate now pursuing a PhD in economics at the University of Chicago.
The researchers used data from the Demographic and Health Survey, a USAID-funded database that provides standardized information on maternal/child health, HIV and other health indicators in low- and middle-income countries. The survey covered 123,000 individuals over age 60 living in 22 African countries between 1991 and 2006.
The scientists found a very strong correlation between the rise in AIDS death rates in these countries and an increase in elderly individuals living alone. For every one-point increase in AIDS mortality rates, they found a 1.5 percent increase in elderly people left to manage on their own.
In the 22 countries, the estimates translated into 582,200 to 917,000 elderly people left unattended, the researchers found. About a third of them — or as many as 323,000 — were also caring for young children. These individuals were more likely to be women, uneducated, living in rural areas and poorer than their attended counterparts. The results suggest HIV/AIDS has had a disproportionate impact on elderly people of lower socioeconomic status, the researchers reported.
Kautz said he was surprised the figures weren't even higher. He said he believes there are many more older individuals who have been left alone as their children die of AIDS, but that these elders have moved in with relatives or neighbors. These individuals would not be accounted for in the study, he said.
Although HIV has generally reduced life expectancies in Africa, those who escape the epidemic are living much longer as a result of greater access to health technologies, the researchers said. So there is an increased need for elder care services, they noted.
Yet few African countries have public pension programs or formal systems for caring for elders; most rely on traditional family structures, now undercut by the strain of AIDS, to provide this service. The researchers said the study points to the importance of taking these needy elders into consideration in allocating resources and planning programs.
"This is another component of the social consequences of HIV. So people in agencies who make resource allocation decisions need to consider this cost of HIV, and it's a pretty important one," Miller said. "Those working on the ground dealing with late-stage AIDS patients also need to think about the dependents of these patients."
Policies that help reduce AIDS mortality also will be of help to this group, he said.
"Future work is needed to more closely examine the health and overall welfare of this population, but our work suggests that reducing AIDS deaths in Africa may provide substantial benefits to this under-recognized population," the researchers concluded.
The researchers said the study is just a first step in understanding the problem. They speculate that elderly individuals who are alone suffer greater health problems, though they didn't specifically address the issue in the study. Similarly, they did not look at quality-of-life issues, though they suspect that these elders suffer physical and financial burdens as a result of being primary caregivers for young children. More research is needed on the health, well-being and other issues associated with these neglected elders, they said.
The two-year long study, published in the September edition of the Journal of the International AIDS Society, was conducted by American and Kenyan investigators at a United States Agency for International Development-Academic Model Providing Access to Healthcare (USAID-AMPATH) Partnership clinic in central Kenya.
Task-shifting has been advocated by the World Health Organization and other health experts in the context of a clinical health care worker shortage in resource-limited settings.
The study evaluates a community care coordinator (CCC) model, in which HIV-positive care workers provide support for their clinically stable HIV-infected peers with the assistance of personal digital assistants (PDAs). Results show clinic visits being reduced by 50% among the intervention group and accepted by clinic staff, patients, and CCCs themselves. CCCs were also able to identify patients' psychosocial problems and monitor treatment adherence.
The USAID-AMPATH Partnership clinic Mosoriot Rural Health Centre, located in the rural Kosirai Division of Kenya, was the site of the study. Eight of the 24 sub-locations of the Kosirai Division were randomly assigned to the intervention, with the rest acting as controls.
Nine HIV-positive patients from the Mosoriot clinic were selected to be CCCs, underwent didactic and practical training, and were paid an outreach worker's salary, lower than that of clinical staff. Eight entered the field, with one acting as an alternate. All eight remained in the field for the duration, managing between eight and 20 patients each.
In the CCC model patients were seen every three months at the clinic rather than monthly as occurs in the Mosoriot standard of care model.
During the two-month interim, patients would be visited monthly by their CCC, who measured their vital signs and reviewed symptoms as guided by a preprogrammed PDA: CCCs would ask patients a series of questions regarding their health, such as the existence of a cough or vomiting, and record answers in the PDA. If a patient displayed a symptom or collection of symptoms, the device prompted further questions, such as their length and severity, and triggered an alert if patients' answers fell outside of pre-established parameters, giving detailed instructions to CCCs for further action. CCCs also dispensed patients' monthly supply of ART and opportunist infection medication.
CCCs underwent continuous evaluation and assessment throughout the study - more rigorously during the mentoring period - and were given superior, satisfactory, or unsatisfactory evaluation scores by clinical officers.
At the end of the first year, 133 formal evaluations had been completed on the eight active CCCs (16 to 17 evaluations per CCC). CCCs consistently received superior summary scores: 89% of all summary scores were superior and the remaining satisfactory. 88 evaluations (11 per CCC) were undertaken in Year 2, during which 94% of summary scores were superior. Clinic staff also monitored CCC performance by comparing data collected at home visits, including that recorded in PDAs, with data collected at the clinic.
Investigators used evaluations and transcripts of monthly CCC meetings to assess the model, highlight and address problems, and improve the programme throughout the study. Investigators also regularly met with CCCs and clinical officers to discuss barriers and enhance CCC performance.
At the trial's end, of those not lost to follow-up, 64% (56 of 87) of patients in the intervention arm and 52% (58 of 103) in the control arm were willing to continue (p = 0.26). Additionally, CCCs were contacted by non-enrolled patients who wanted to receive such care. As such, investigators claim that patients accepted the programme.
In addition to reducing patient visits, the CCC model resulted in greater identification of and support in resolving psychosocial issues, such as alcohol abuse and food insecurity, than in the standard of care model. CCCs themselves also felt that they were better able to monitor treatment adherence than clinic staff as pills could be less easily hidden during home visits. Finally, CCCs acted as a link between the AMPATH pharmacy, outreach and clinical teams, and patients.
The author's warn that such a programme is not cost free. Training, PDAs, and salaries must be accounted for, but may be partially offset by the decrease in clinic visits.
Additionally, HIV disclosure remains an issue for patients, and therefore similar programmes should aim to avoid the "AIDS label."
It took longer than anticipated for CCCs to adapt to new technologies such as PDAs, and therefore more time should be given to training with such instruments; and mechanisms must be put in place to facilitate CCC referral to the clinic and clinic referral of follow-up of particular issues to the CCCs.
Issues such as stigma and client and staff expectations were highlighted and addressed throughout the study's period. The authors also stress the importance of finding committed individuals to act as CCCs.
Reference
Wools-Kaloustian K et al. A model for extending antiretroviral care beyond the rural health centre. Journal of the International AIDS Society 2009, 12:22
We cannot deliver without involving the people.
An ActionAid research report emphasising good basic health services as the key to fighting Aids has been launched ahead of the week-long global citizen summit on Aids in Kenya’s capital city, Nairobi.
“Primary healthcare is the first poor of call for poor and excluded people especially women and girls”, Leonard Okello said at the launch.
“Yet it is the least funded, dysfunctional in its current state.”
According to the report, there is not enough investment to support primary healthcare and available funds are not effectively and efficiently spent.
Prof Miriam Were the chairperson of the National Aids Control Council in Kenya said that continuous efforts must be made to improve the quality of health care for the fight against Aids
to be effective.
“We cannot deliver without involving the people. The world must take responsibility to look into the preventive and curative health services at the community level,” she said.
Quoting the UNAIDS report Leonards said 75 percent of the HIV work is being delivered by community and households, yet only 25 percent of the global Aids money reaches the community level.
“It is time we thought how to restructure in order to deliver effective and efficient services to the communities rather than maintaining the Aids bureaucracies we have created”.
The research titled Primary Concern: Why primary healthcare is key in tackling HIV and Aids conducted in India, Pakistan, Nigeria, Sierra Leone, Tanzania and Uganda, demonstrates the role that improvements to primary healthcare could play in achieving universal access to HIV services as well as ensuring effective and sustainable response to the long term problem of HIV and AIDS.
According to the research, the long term goal should be to provide HIV services through the public health sector system.
The report calls for improvement in funding, policy and implementation revealing that available finances are not being spent effectively.
Download Report PDF(76p, 1.05MB)
PLUSNEWS
Mara Kardas-Nelson, Thursday, January 07, 2010
Despite the now near-universal agreement within the global public health community that community healthcare workers (CHWs) can play an effective and often necessary role in delivering testing, treatment and care to under-resourced communities, there has been little consensus as to how such workers should be trained and paid, and/or where they fit within greater healthcare structures.
Many CHWs work part time, often as stipended or unstipended volunteers, and receive minimal training when compared with their clinically-based counterparts. Such workers also have a high rate of turnover, with low retainment cited as a concern for organisations hoping to offer patients continuous care.
The CHW discussion continued at the 40th Union World Conference on Lung Health in Cancun, Mexico in early December, with Partners in Health (PIH) advocating for better pay and training for CHWs. The organisation also claims that CHWs should be considered to be equally important as nurses and doctors.
Given the amount of time and commitment needed for community-based workers to adequately address patient needs, Dr. Michael Rich of Partners in Health says that asking people to volunteer for little or no pay is “unrealistic. They need to be adequately compensated.”
As such, the organisation pays CHWs for part time work. Going rates depend on the country: in Rwanda, for example, Partners in Health gives CHWs $56 US a month.
While Rich notes that this is “embarrassing low compared to what some of us make,” he contends that such jobs are “very sought over” and that there is a “low turn over rate.” Generally, CHWs are “very content with their jobs,” and “satisfied with their payment.”
Given that this work is not full time, Rich claims that CHWs are able to dedicate approximately half of their economic time to pursuing other work.
Beyond simply paying CHWs, Partners in Health also advocates changing what Dr. Joia Mukherjee, the organisation’s medical director, considers a “very top down and…clinic [focused] approach” in which CHWs are seen as peripheral to medical teams instead of an integral part of the greater health care system.
“Paying them is key, but also making sure that they’re really part of the team,” says Mukherjee. “We have excellent retention of CHWs in Haiti and Lesotho, and [those are places] where they really are part of the team.”
She continues: “Part of what we [aim to] do with CHWs is truly change the philosophy of what is valued. The way to really empower people is to give them a job and work with them to hear what they say. In [Partners in Health’s] Lesotho [programme], the CHWs get to drive what happens...for home visits. It’s up to that person’s clinical judgments and social judgment. It really is humbling” for a doctor to hear from the community, she says. “We need to sensitise the medical establishment to the needs of the community.”
“[We’re] really trying to reverse the power,” says Mukherjee. “[TB] is a disease of poverty; it’s also a disease of disempowerment.”
In response to the successes of Partners in Health programmes and other CHW models, the Rwandan government recently announced a “massive scale-up of CHWs,” says Rich, with 45,000 such workers currently operating in a country with a population of 10 million; three CHWs are available for each village area of 100-150 houses.
“Rwanda really is taking the lead [with regards to community-based health care] with [this] massive scale-up,” he says.
Other countries that are also heavily reliant on CHWs have not been as supportive. Dr. Mavis Nonkunzi of South Africa’s TB/HIV Care says that the organisation, in conjunction with the Treatment Action Campaign, have campaigned for the country’s government to officially recognise CHWs as health care workers.
While a standardised stipend does exist for CHWs, Nonkunzi claims, “it’s far less for those who work with TB than [those who work] with HIV.” TB CHWs receive a fixed stipend for their work, while those focusing on HIV receive a stipend per patient.
According to Rich, Partners in Health aims to “measure the impact and outcome of CHWs. If we can show that paying them a fair salary may result in better outcomes” then more countries could follow Rwanda’s lead. Given the large amount of work that many CHWs do, community-based healthcare in which CHWs are paid is a “really inexpensive programme,” says Rich. Regardless of the cost of such programmes, Mukherjee contends, “it’s not more expensive than…people dying of treatable diseases.”
Sources
Mukherjee, J. Management of TB and HIV care in hurricane settings: perspectives from the Western Hemisphere. Presented at the 40th Union World Conference on Lung Health, 2009.
Nonkunzi, M. Engaging community members in integrated TB-HIV and PMTCT services and infection control. Presented at the 40th Union World Conference on Lung Health, 2009.
Rich, M. A network of community health workers keeping the community healthy: experiences from Rwanda. Presented at the 40th Union World Conference on Lung Health, 2009.