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PATA Newsletter Volume IV Issue 7

Guest speaker line-up for PATA 2009 revealed

1. PATA 2009 Regional Forum (Southern Africa): Guest speaker line-up
2. Kalembelembe, DRC: Disclosure to children
3. JCRC, Uganda: Making headway with nutrition
4. Coast Provincial, Kenya: Better nutrition assessment
5. Kakamega, Kenya: Square metre gardening
6. Graça Machel speaks at IAS in Cape Town during July

1. PATA 2009 Regional Forum (Southern Africa): guest-speaker line-up announced

The 2009 PATA Regional Forum (Southern Africa) will be held at the Birchwood Hotel and Conference Centre in Johannesburg (www.birchwoodhotel.co.za) where teams will also be accommodated. This venue has been chosen because of its close proximity to OR Tambo International airport, therefore making logistics easier.

Teams will arrive on Monday the 2nd of November and the Forum kicks off that same evening with an opening function. The academic programme starts on the Tuesday morning and runs until the Thursday afternoon.

The provisional guest speaker line-up (which is likely to change closer to the time of the forum) includes:

Day 1 (Tuesday 3 November) Advanced ARVs
(Convened by Dr Ashraf Coovadia, Adjunct Professor, Enhancing Childhood HIV Outcomes at Wits University and Head of paediatric services at Empilweni Clinic, South Africa)

• Dr Tammy Myers & Dr Ashraf Coovadia: ('What it takes to establish a functional multidisciplinary unit that provides holistic care to children needing HAART')
• Dr Leon Levin (Right to Care, South Africa: 'Dealing with treatment failure' & 'Problems with fragile regimens')
• Dr James Nuttall (UCT, Red Cross Children's War Memorial Hospital: 'The benefit of weight-bands for calculating dosages')

Day 2 (Wednesday 4 November) Adolescent care revisited
(Convened by Dr Diane Gray, Groote Schuur Hospital & Kidzpositive family Fund)

• Melanie Pleaner (LoveLife & National Adolescent Friendly Clinic Initiative, South Africa: 'Why we need to be adolescent friendly, and how to do this in our clinics')
• Barbara Kaim (TARSC, Zimbabwe: 'Auntie Stella'),
• Dr Diane Grey (Groote Schuur Hospital/ UCT, South Africa: 'Experiences from an Adolescent Clinic ')
• Lucia Matshoba (Kidzpositive, South Africa: 'A mother's experience of an adolescent with HIV')
• Other issues addressed on this day: Reproductive health for young women, peer group educators and ARVs for adolescents.

Day 3 (Thursday 5 November) Clinic psychosocial toolkit
(Convened by Dr Prithiviraj, Queen Elisabeth II Hospital, Lesotho)

• Dr Deon Solomon (ARK, South Africa: 'How to put together a patient advocate and nurse practitioner curriculum')
• Dr Jonathan Brakarsh (Clinical Psychologist, Zimbabwe: 'Say and Play'*)
• Dr Prithiviraj ('The role of faith-based organisations')
• Other speakers will address the issue of caring for the carer, knowledge translation and using yoga in your clinic

* 'Say and Play' is a tool for young children (3-6 years of age) and those who care for them. It can be used by home based carers, early childhood development teachers, and community action groups. Its major objective is to allow orphans and vulnerable children to have a voice to speak about issues that affect their lives and for the adults, often in collaboration with the children, to reflect and take action.

Master classes will be optional and will address the following issues:

• For the doctors: 'Advanced Paediatric HIV case studies' by Dr Leon Levin
• For the nurses and counsellors: 'How to use Auntie Stella with adolescents' by Barbara Kaim
• For the pharmacists: 'Pills of wisdom: Pharmacists communicating with patients' by Dr Jenny Watermeyer

2. Kalembelembe tackles disclosure to teenagers

Kalembelembe clinic in Kinshasa (DRC) currently has 180 children between the ages of 11 and 17 years enrolled in their programme. By the end of 2008, only 35 of them had received disclosure. Currently only an additional 15 children have received disclosure. This means that hardly 28% of teenagers have received disclosure. Kalembelembe has been working hard to improve this situation.

Although more than 60 teenagers on follow-up have gone through all the stages of disclosure and are finally ready to know about their HIV status, the challenge remains that parents or caregivers are reluctant to disclose to their children, and instead choose to delay the process.

This delay in fully informing adolescents can be very risky. After disclosure and during his first participation at a support group meeting, a teenager began crying and said to the Kalembelembe psychosocial team: "If ever my treatment fails, you will bear the responsibility alone. You should have told me long ago that I have HIV so that I am aware of my condition and I take my medications properly. Due to being healthy, at some point I used to throw away my medicines because I didn't understand fully the reason I was taking them."

This delay can also lead to distrust between adolescents and their caregivers. After disclosure, a Kalembelembe teenager asked the healthcare provider: "Since my family knew my HIV status and didn't want me to know it myself, I prefer that you do not inform them that I already know now. At home I will pretend that I have no idea and I will innocently let them monitor how I take my pills. Two can play the game. We will see – who hides what from whom?" But the process is obviously extremely complex and often difficult for the teenagers to accept. At an advance stage of disclosure, a teenager said: "I know I have a chronic illness that can be transmitted by my blood, but I refuse to know the name of this disease. Keep it to yourself; personally I will take my medications appropriately."

Disclosure is also a very difficult process for the parents and caregivers, who often fail to attend the final disclosure session at the clinic and prefer to send their children alone or with other people. And so it seems that an element of denial has to be combated in both children and their parents.

Contributing to their challenge is that only a handful of counsellors are trained in disclosure, and they often have large amounts of other work and cannot focus on disclosure alone. In spite of this, most children in the program do know that they have a life-long chronic disease that requires them to adhere to their treatment in order to stay healthy. And so while they might not be fully aware of their status, they have at least started on that process.

Children who have received disclosure meet once a month to freely discuss various subjects such as sexuality, marriage, living with HIV and adherence to treatment. Kalembelembe also hoped to train teenagers as peer educators, but has not been able to do so due to a lack of funding. However, what has been very encouraging is that some teenagers already play the role of informal peer educators during the disclosure process – they talk to newly disclosed children right after disclosure and they welcome and encourage newcomers into their support groups.

3. Nutrition issues dealt with at JCRC, Uganda

The Joint Clinical Research Centre (JCRC), in Entebbe, Uganda, has made good progress in achieving the numerous tasks around nutrition that it set for itself. JCRC held a staff training session on infant feeding in the context of HIV. Following on this, in May and June 2009, two caretakers' workshops were held where nutrition was discussed. Particular emphasis was put on the feeding of infants.

All children have their weight and height measured and plotted on growth curves every time they visit a clinic. In this way, many children who need nutritional intervention have been identified.

The JCRC nutritionist has makes home visits to children that have been identified and treated for severe malnutrition. The purpose of the visits is to assess food security and offer practical solutions. The families with critical needs have been given food packages which include millet flour, sugar, maize flour, beans and oil. With subsequent home visits, these families are advised on possible nutritious foods to grow at their homesteads. The results so far have been encouraging.

JCRC has also made progress in other tasks, such as income generation projects, linkages with PMTCT and expanding HIV PCR testing. They now also have six Expert Patients assisting in the clinic. One of the goals they are still trying to implement is to host a training workshop for staff, where issues around the psychosocial care of post traumatic children can be looked into.

4. Better nutrition assessment programme at Coast Provincial Hospital, Kenya

Whilst reporting back to PATA recently, the Coast Provincial Hospital described how they have successfully increased the number of infants accessing ART through a combination of prompt identification and follow-up. The hospital has also expanded its growth monitoring and nutrition assessment programme, which aims to identify kids at risk of malnutrition.

The hospital still faces challenges though. These include streamlining and improving communication between the HIV clinic and PMTCT, and dealing with the nutritional problems linked to poverty. Social services and the community itself need to play a bigger role in offering support to the child and its family. There must be better social support systems (e.g. providing food, grants and income-generating activities) and a community support link must be developed to follow up on medication and defaulters. The hospital would also like to establish a youth-friendly clinic.

To meet their goals set in Rwanda (2008 Forum), Coast Provincial Hospital feels that they need to further strengthen the link between the HIV clinic and PMTCT, establish a M2M2B programme and identify social services and NGOs that can offer the necessary support.

The Coast Provincial team believes that PATA can help them meet their goals by making available the shared experiences from other clinics, continuing to follow up and send updates, and provide further funding for expert patients.

Coast Provincial Hospital currently has 12 infants under 12 months on treatment and 481 children between 1 and 18 years on treatment.

5. 1m² garden works for Kakamega in Kenya

Inspired at the PATA Swaziland conference (2007), the Kakamega team decided to start their own 1m² garden project as one of their six month goals. The idea behind the 1m² garden is to maximize the use of small patches of land – which is what most patients have access to – by intensively growing high-yielding plants (mainly vegetables) for domestic consumption and also for extra income-generation.

The team already had a kitchen garden at the Kakamega Hospital, so they decided to institute the 1m² garden project at Bugoma Hospital. Bugoma already had a 'normal' garden outside the clinic, but in January 2009 they converted this garden into many small 1m² patches. Various traditional vegetables recommended by their nutritionist were planted. These included sucha, kunde, dodo, saga kales, spinach and tomatoes. John, one of the regular patients, has been running the garden.

When clinic patients come for their appointments they are given the chance to go and look at the demonstration plots. These demonstration gardens have become very popular among all clinic visitors. Kakamega is now busy creating two new demonstration gardens within the communities where their Expert Patients work with support groups

Getting adolescent patient volunteers to help has been one of the most difficult aspects of the garden. While most are interested, they often have very little time after their clinic visits or they simply behave like typical adolescents and say things like "Gardening is not my thing!"

But Kakamega hopes to overcome these obstacles when they take the gardens into the villages where the adolescents live. After initial problems to establish good ties with them, Kakamega has also lately been getting expert advice from the Agriculture Department.

Kakamega is determined that every needy family in their region will get their own 1m² garden so that they can be self-reliant for their food. To view pictures of the Kakamega Garden please visit the PATA website – www.teampata.org

6. Graça Machel inspires at International AIDS Society conference

At the International AIDS Society conference held recently in Cape Town, Graça Machel, the outspoken activist for women and children's rights, made one of the closing addresses. She chose to speak on behalf of millions of community heroes on the continent.

She recognised that while Africa suffers greatest under the pandemic, we as Africans have to be part of the solution if the virus was to be defeated. "Africans should not only be trial subjects, but active partners trying to find answers. By holding this conference on the continent, the international community is acknowledging what Africa has to offer, she said. The recent launch of the South African AIDS Vaccine Initiative further proves that Africa is part of the global effort."

Amongst so much devastation and death in African communities, Machel emphasised that there is still solidarity, strength and hope amongst us. Machel warned that we cannot be complacent. "No longer are we attending funerals every weekend, and there are now increasing numbers of HIV free children born. So we must all pause to recognise our achievements, but there is still more to be done."

She said that we have to sustain and increase funding so that treatment programs can be scaled up. "HIV is not in recession," Machel stated, "Human life is priceless, yet we are often left begging for funds, even though peoples' lives are more important than banks".

"Often too much emphasis is placed on money, power and possessions when in fact human beings are the most important. A change in priorities is therefore urgently needed, and so the issue here is not only money, but consciousness," Machel said.

Year after year, the international community makes pledges it does not keep. "We, the people, need to remind the governments that we voted for that their legitimacy depends on their ability to protect us, their people. We need to hold governments accountable in order to achieve universal HIV treatment and care. It is no longer business as usual," concluded Machel.

To view the webcast of Graça Machel's speech visit: www.ias2009.org/pag/webcasts/?sessionid=2385

Contributors to this edition: Dr Patricia Lelo (Kalembelembe), Dr Victor Musiime (JCRC), Dr Mandi (Kakamega/ Bugoma), Hannah Hussey, Melanie Evans, James Millar, Toast Coetzer, Virgile Mahoro

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