15 August 2006

Easing the pain of HIV+ children

Researchers develop a way to relieve the suffering of children living with Aids.

Each year, in South Africa alone, approximately 100 000 infants are born infected with HIV. And with less than 5% of HIV-positive children actually receiving paediatric anti-retroviral treatment, large numbers of acutely and chronically ill children are filling the wards of South Africa’s public hospitals. On a daily basis, health care providers and caregivers are confronted with very sick children in need of urgent and empathic care.

Difficult circumstances, however, can provoke simple, creative and practical solutions. And those most affected often guide the way.

At King Edward VIII Hospital in Durban, staff and a team from the Human Science Research Council (HSRC) have re-discovered the power of simple, home-grown solutions to difficult circumstances.

In January 2005, the HSRC was asked by the senior paediatric specialist to find ways to help ease the suffering of very sick children, many with HIV/Aids, admitted to hospital with their distressed mothers or other primary caregivers.

The request included developing strategies to encourage the active feeding of children and to increase the confidence of caregivers involved in medical procedures. The nursing staff also asked for help in providing support to caregivers in the ward, many of whom have worries about their own health and the well-being of their families. They also indicated that caregivers need to be prepared for return home and continued care.

With the consent of hospital authorities and the approval of the Human Sciences Research Council Ethics Committee, the team spent eight months observing and filming ward staff, children and caregivers in everyday moments of care. During this process, they learned that caregivers and health care providers often hold the key to improved care for very sick children in over-burdened environments.

On film, the team captured caregivers and medical staff practically and spontaneously responding to stressful care environments using a variety of helpful techniques - techniques that could form the basis for low-cost interventions in resource-limited contexts. They observed caregivers giving children comfort objects to help deal with separation anxiety. They documented mothers and nurses using touch and massage to provide comfort during painful procedures, and they witnessed mothers increasing social interaction with their children to stimulate feeding.

With children's' needs foremost in every discussion, the video material was then used as a catalyst in discussions with nurses and medical staff to explore barriers and opportunities for improving care.

Using actual situations in the ward as well as enacted footage, five 15-minute videos were made. Each film tells a story, posing a dilemma for caregivers and staff, illustrating what the problems are, and making suggestions for which approaches are likely to be most helpful.

The films have been enthusiastically received by staff and caregivers although a formal evaluation study will be carried out to assess their feasibility and their impact on staff, caregivers and children. In addition, nursing staff will be trained on the five topics identified in the pilot, and to use the video material to support and counsel caregivers. Peer support groups for nurses will also be formed.

August, 2006

Linda Richter and her team presented their findings on 15 August, during a poster session at the XVI International AIDS Conference in Toronto, Canada.

Professor Linda Richter is the Executive Director of the Child, Youth, Family and Social Development research programme, Human Sciences Research Council, South Africa. Other members of the research team are Tamsen Rochat (HSRC), Nigel Rollins (University of KwaZulu-Natal), and Linda Govender (HSRC)


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Dr Sindisiwe van Zyl qualified at the University of Pretoria in 2005. She is a patients' rights activist and loves using social media to teach about HIV. She is in private practice in Johannesburg.

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