Team PATA

Newsletters

November 2006. Vol. 1 Issue 9.

Contents

• PATA 2006 conference update
• PATA 2006 What we are going to learn
• Let's Kick AIDS out of Africa linking Grass Roots Football and PATA clinics
• Evaluations from returning teams
• British royals visit Cape Town clinic
• Midyear-feedback Keiskamma Health Project

PATA 2006 conference update

The PATA 2006 conference begins in just two weeks! This year's conference will include 32 teams from 17 different countries. This is an exciting prospect for conference delegates as it means that they can share in a wide spectrum of experience and knowledge from participants from the different countries.

PATA 2006 takes place from 27^th November to 1^st December at the Safari Club Hotel in Nairobi. We have booked accommodation for delegates at the Nairobi Safari Club and the nearby Savora Stanley.

A preliminary conference agenda can be viewed on the PATA Website. The topics of each day are:

28^th November - Practice: How do we best do what we do?
29^th November - Patients: Our patients, do we hear them?
30^th November - PATA Effect: Support for paediatric treatment and amplifying healthcare capacity through social entrepreneurship.

Friday, the 1^st of December, we will have a special event to celebrate life and to commemorate World AIDS Day.

The expected outcomes for the conference are as follows:

1. Increased focus on teamwork to enhance quality of healthcare
2. Increased confidence in managing difficult cases failing ARVs
3. Increased ability to counsel and manage non-disclosure and adolescent care
4. A better understanding of the use of software to facilitate clinic functioning
5. A closer understanding of social entrepreneurship and its power to enhance care
6. Stronger network to support PATA teams
7. Improved use of the PATA website discussion forum

An exciting addition to the programme this year is the presentation of evening Master Classes. These speciality classes will be conducted as focussed workshops presented by recognised leaders in specific fields – interaction between delegates and the class leaders will be a mainstay of these classes.

This year there will be a series of Master Classes focussed on Information Technology (IT) and how to build skills within your clinic by using access to electronic media. We will look at how clinics can best get their sites online, how to access educational materials, how to connect to the PATA e–network, managing clinic records with data bases and how to become familiar with spreadsheet and other e–tools to make your data management more efficient. In short, we will try to help you to make your own work easier, more continuous and more efficient so that both clinic and patient can benefit.

Other Master Classes will look at treatment, communication, income generation and social entrepreneurship.

We are very pleased to have six francophone teams at this year's conference. Simultaneous translation from French to English will be provided during the plenary sessions and we have catered for French–speaking workshop groups. We are looking forward to the variety of perspectives which will be coming together from across the conference to be given centre–stage during the three days of PATA 2006.

What we are going to learn Select conference abstracts

Here is a selection of abstracts from some of the speakers at this year's PATA conference – just to give you an idea of some of the topics which will be covered.

2.1 Michele Youngelson

Title: Protecting Vulnerable Children – A Systems Approach to Improving Paediatric HIV care in the Helderberg Basin, Cape Town.

Although the VCT uptake and acceptance of PMTCT in antenatal clinics in the Eastern sub–District in Cape Town in 2005 was excellent, many infants born to HIV positive mothers in this programme failed to access routine early screening methods for infant HIV. Early diagnosis of HIV is crucial since many HIV positive infants present with clinical symptoms in the first few months of life proceed with rapid progression to severe illness or death. These deaths could be prevented by improved transfer of PMTCT information to primary infant care clinics and early referral for care.

A health systems improvement approach was used to (i) increase PCR testing of HIV exposed infants, (ii) increase early referral of infected infants for HAART and (iii) improve tracking of HIV positive mothers so as to reduce the risk of babies being orphaned.

Healthcare Workers in six primary care clinics in the Helderberg Basin – a part of the Eastern District in Western Province – used a healthcare systems improvement approach to identify obstacles to early diagnosis of HIV positive babies on the PMTCT programme. They also tested local solutions to overcoming these obstacles.

The staff's intimate knowledge of the healthcare system enabled them to identify reasons that some infants were not having PCR tests done at fourteen weeks as per the protocol. These included the mobility of mothers post–delivery as well as a failure in the transfer of information from the maternity units to the immunisation clinics indicating which infants were at risk of contracting HIV.

Interventions currently being tested to overcome obstacles to care, include: improving the transfer of PMTCT information from the MUs, increasing the ‘index of suspicion' at the clinic, requesting HIV status information from the parent, and managing the mother and child as a unit.

Clinic Healthcare Workers are optimizing immunisation visits to increase identification of at risk mothers and children. As a result, paediatric referrals for ARVs are increasing and CD4 count testing is being done for mothers at paediatric immunisation clinics. One immunisation clinic has also begun to assess the HIV status of the fathers of children on the PMTCT programme.

Health systems improvement methods can be used to enhance the process of identification and referral of HIV positive children and their mothers. The PMTCT programme, which is primarily designed to reduce peri–natal transmission of HIV, can also be used to track at risk mothers and thereby prevent children from becoming orphaned.

2.2 Dr Margaret Makanyengo

Abstracts of two presentations:

Title: Diagnostic counselling and testing of a 12 year old child in the paediatric department of Kenyatta National Hospital

This presentation describes the process of disclosure of HIV to a 12 year old child who was diagnosed with TB and HIV while in the wards. He was discharged to attend the HIV Comprehensive care clinic as an outpatient. By this time he had not known his status. This case describes the process of disclosure of the HIV status to the child in the clinic and the outcome.

Title: HIV counselling protocol for children in Kenyatta National Hospital

This presentation outlines the algorithm developed by Paediatric Mental Healthcare Workers and counsellors in Kenya. It takes us through the process of diagnostic counselling and testing, followed by psychosocial support and adherence counselling. It is a simple tool that can be adopted elsewhere and modified to suit the specific clinic.

(Co–presented by Dr Gregg Stracks, PHD Paediatric Clinical Psychologist)

2.3 Dr Ashraf Grimwood

Abstract: Introduction

Community Adherence and Access (CAA) programme is a critical component to improving access to treatment and support at the primary level of care. Absolute Return for Kids (ARK), a children's charity, has used several mechanisms, in order to support patients within the community and to ensure mobilisation. Patient Advocates (PA's), who became a critical part of the team, proudly support their patients. They do this by addressing psychosocial needs, ongoing education, social access through support and networking to improve access to (child care support, foster care support, disability grant).

Objectives: Methods

Quantitative data on a sample of 30 patients with PA's and 36 patients without PA's were collected by using the ARK Home Assessment form, the ARK Readiness Assessment form and a questionnaire concerning disclosure.

Statistical analysis revealed that 53.33% of the patients with PA's disclosed to at least one person, after they were informed about their HIV+ status. Also, 36.67% of the patients disclosed to at least one person, when they started with ARV treatment. For the patients without PA's, the above mentioned averages were found to be 44.11% and 14.70% respectively. These results could possibly show that the time after the HIV+ results and the time before the initiation of ARV treatment is crucial for the issue of disclosure. A statistically significant difference was also established between the group of patients with PA's and those without PA's in the number of people disclosed after the initiation if ARV treatment (p<0.05.) That could be related to the fact that the patients with PA's are strongly advised by the PA's to find a treatment buddy, before they start receiving ARV treatment.

Finally, a statistically significant increase (p<0.000) in the radius of people disclosed after six months being on ARV treatment was found in the group of patients who are linked to the PA's.

2.4 Dr Shaffiq Essajee

Title: Setting up new clinics and systems of care: Problems and solutions

The quality of a national HIV care and treatment program rests on its treatment sites and the quality of the services that they provide. Although many different models exist for paediatric HIV care delivery, a careful approach to patient flow, clinic management and provider continuity can achieve great success, especially in urban tertiary centres. And yet, at the global level, paediatric treatment lags far behind adult treatment. Our challenge is to continue scale–up efforts and to reach children through primary and secondary level healthcare facilities. Successful programmes need to decentralize their activities and support the growth of new satellite centres that can expand the network of care sites. At the same time, it is imperative to focus on quality as much as quantity. Tertiary centres should continue to look to the future and develop new initiatives that can serve as models for comprehensive, integrated high quality paediatric care and treatment.

To share ideas, both about successes and failures! To gain insights into improving our own systems of care in order for everyone involved to benefit. To introduce new global initiatives to colleagues that can potentially provide support to sites and national programs.

PATA asked Dr Essajee a few questions about PATA 2006.

PATA: What are you most looking forward to?
Dr Essajee: I am excited to meet old friends and to meet new colleagues – it makes you feel part of a global paediatric HIV care community! It is important to brainstorm with colleagues about the challenges of the future.

PATA: What is the biggest challenge to paediatric AIDS treatment in Africa?
Dr Essajee: We need well–trained human resources. There seems to be an inability to bring in new cadres of staff to improve work efficiency and maximise clinician time with the patient. We also need more research to be done on the long term prospect of life long care for HIV–infected children.

PATA: How do you see the roles of the Facilitator and the Presenter in the PATA conference context?
Dr Essajee: I think a facilitator helps to interpret and integrate the work of different presenters into a framework that the audience can understand. Together, they create a take-home message to the participants.

Let's Kick AIDS out of Africa linking Grass Roots Football and PATA clinics

The One to One Children's Fund's London office is working on an exciting new initiative that links PATA clinics to Grass Roots Football projects. The initiative promises to open up new streams of funding and to enable clinics to engage with their local communities in a new, creative and positive way.

In December this year Grass Roots Football experts will present a model for collaboration at the annual PATA conference in Nairobi. Members of SFW will be invited to attend the conference to contribute their local knowledge and experience and meet PATA counterparts with a view to developing individual regional collaborations. After the PATA conference these collaborations will be developed into pilot projects to test out the model. If the pilots are successful the projects will be rolled out to the rest of the PATA sites across Africa.

We want the Kick AIDS Tour to be a tool to assist the roll out of these partnerships. The Kick AIDS Tour will be a travelling medical and football road show that starts in Northern Africa and finishes in Cape Town at the 2010 World Cup. We are planning for the Tour to involve existing HIV clinics and Grass Roots Football projects across Africa, drawing them together to support each other in AIDS education and treatment. It is envisaged that on a grass roots level, the Tour will reach out to young people, breaking down HIV⁄AIDS stereotyping and stigma, by offering football coaching to all and through football, promoting AIDS counselling and testing to young footballers.

On a national level, this will encourage governments and sports authorities to engage with and fund some of their most successful grass roots level projects and push AIDS awareness and treatment up the agenda.

Grass Roots Football (soccer) is played and loved by children of all ages across Africa. It is about fun, team spirit, learning and using football as a cultural mediator and a medium for social development. Children can play with anything from a leather football through to a ball of plastic bags tied up with string? This means that the projects don't cost much to set up. Grass Roots Football projects across Africa are proving to be highly successful in providing a platform and an opportunity for educating children about AIDS and breaking down stigma. We will be hearing details of this from an organisation called Grass Roots Soccer at the PATA conference this year. They have many years of experience at running successful football programmes with HIV prevention messages.

A new discussion has been opened on the PATA Forum please contribute your thoughts to the development of this initiative online. If you would like to find out more about this exciting project you can also email Victoria Todd, Director of One to One Children's Fund at vtodd@one2onekids.org or Dan Berelowitz, Project Officer at dan@one2onekids.org

Evaluations from returning PATA teams

We would like to thank all the teams that have returned their PATA evaluations. If you haven't filled out this form yet, please take a moment to download it, just click here. You can then fax this form back to us. This information is very important for PATA as it helps us to support the PATA clinics in the very best way we possibly can. Please note that this information is required for participation at this year's event if a team from your clinic attended the 2005 PATA conference in Cape Town. If your team has not submitted an evaluation form, please complete as soon as possible. You can fax it to +27 21 406 6169. If you need any assistance with this please let us know.

Royal visit to Crossroads Clinic

On Monday the 16^th of October, British Royals paid a visit to the Crossroads Clinic in Cape Town. Prince Edward, the Earl of Wessex and Countess Sophie, impressed everyone with their warmth and easy nature. According to Dr Paul Roux, they “impressed everyone with their obvious empathy”.

The couple were particularly taken with the positive attitude amongst staff and patients that they encountered at the clinic. “The Countess indicated that they had expected doom and gloom after all they had heard about HIV in South Africa,” said Dr Roux.

The Royals enjoyed the Beadwork Project in particular. They understood how an income generation project was a crucial need for the ill and indigent. According to a report in the Cape Argus Newspaper, Prince Edward spoke to a group of HIV–positive women. From the Crossroads Clinic, the couple moved to the Red Cross Children's Hospital in Rondebosch.

Mid-year feedback: Keiskamma Health Project

In the last of our clinic feedback reports, we feature the Keiskamma Health Project's Umtha Welanga ARV Treatment Centre in Hamburg, Eastern Cape. PATA spoke to Dr Carol Baker from the clinic.

PATA: Tell us a bit about the background of your clinic.
Dr Carol Baker: The Keiskamma Aids Treatment Program (KAT) was established in 2004 with the aim of providing treatment and support to people infected and affected by HIV and AIDS. There are nineteen villages in the area with an approximate population of 30 000. The area is intensely poverty stricken, with unemployment rates above 90%. At the time, there was no AIDS treatment available in the area, and the primary goal of the programme was to provide Highly Active AntiRetroviral Therapy (HAART) to people in need. In overcoming the challenges posed by providing HAART to a rural and poverty–stricken population, KAT developed innovative and dynamic treatment systems that have proved to be extremely successful in terms of both patient response and clinical outcomes.

PATA: What has KAT's impact been?
Dr Carol Baker: In part as a result of KAT capacity building and advocacy initiatives, the local hospital has received accreditation as an ARV rollout site, and has begun to provide state–sponsored treatment to the community. This development has created an opportunity for KAT to initiate new programmes in response to community needs, building on the expertise and local knowledge in our organisation. From the beginning, KAT has worked closely with local primary healthcare structures and has contained in its vision the goal of improving all healthcare in the area. Community members and KAT staff have identified an urgent need to improve the care given to mothers and children in the area.

PATA: What has changed at your clinic since PATA 2005 in terms of the physical environment?
Dr Carol Baker: We decided to move our primary care clinic to the hospice AIDS treatment site. We have had an architect donate her time to design a model maternal and child health centre alongside our NGO facility and are entering into a partnership with government to do this. We have been gardening and patients still sit in the sun and chat and walk across to our art centre.

PATA: And in terms of patient flow?
Dr Carol Baker: This is still a problem as we have limited staff but patients don't seem to mind the wait as long as they get seen. We have initiated children's days with a meal for monitors and caregivers and the children and give out clothes and dolls. Thus the visit becomes an event and this helps with the wait. We still struggle with the distance to the primary care clinic as it is about 500 metres. We currently use a dilapidated car to move patients up and down between clinics for TB treatment.

PATA: Any specific successes this year?
Dr Carol Baker: Rag dolls proved an unexpected success. We have one project that makes rag dolls and we gave some to the kids and they took to them immediately. We now have donors in the UK buying one doll for one child form our craft project. It interested me that adults feeling miserable also held the dolls and kept them in their beds. Many of our so–called adults are in effect still children with fears and childish needs. It has helped us to see them as such and remember that things that apply to children also are needed by all adults, especially sick ones.

PATA: And successes in terms of intercultural differences?
Dr Carol Baker: We are still waiting to organise a sangoma workshop but we now have a trainee sangoma on our staff. She is of particular help in our hospice with dying patients.

PATA: What changes have you seen brought about for your patients, clinic and yourself?
Dr Carol Baker: Mainly in negotiations with other groups and training and attitude to patients and confidence in ourselves. We are still planning our big move and new clinic but this is a more long term goal.

PATA: Which changes are your biggest priority and what resources do you need to achieve them?
Dr Carol Baker: Our data collection is still not good because of system constraints. We are not doing enough home visits due to the lack in transport. We remain determined to move locations and establish a mother–and–child centre, but struggle due to bureaucracy and finances. But I believe we will do this.

Remember: The PATA Newsletter belongs to each and every one of you. We would like it to be a place where you can feel at home, where you can learn from your colleagues elsewhere on the continent and pass on some of your own knowledge to those who might need it. Please send us any news from you clinic or country – of successes achieved and of challenges that you still face. Anyone can contribute, simply send us an email. Send any news, information, requests or inquiries to editor@teampata.org. We are here to assist you however we can. Paediatric AIDS Healthcare Workers and Researchers contributing to this edition: Dr Shaffiq Essajee, Dr Margaret Makanyengo, Dr Paul Roux, Dr Carol Baker and Dr Ashraf Grimwood.

© PATA 2006. All Rights Reserved. Published online from South Africa.