Abstract #126  -  Home-based palliative care for children under 7 years infected with HIV and their primary caregivers: Development of a training package
Authors:   Presenting Author:   Prof Alan Stein - University of Oxford
Additional Authors:  Prof Alan Stein, Prof Linda Richter, Ms Joan Marston,
Aim: The aim is to describe the ongoing development of a home-based intervention package and training module to help community-based health workers teach caregivers how best to provide responsive care to HIV infected children (0-7 years).
Method / Issue: HIV positive children often require substantial care and the major burden usually falls on primary caregivers who may themselves be positive and struggling to manage. Although antiretroviral medication is now available, less than 15% of children who are HIV positive are receiving this treatment. Many of these children (and families) often receive little care, partly because it is not available but also because what is available is almost entirely clinic based. For a range of reasons including difficulty with transport, problems in carrying a sick child substantial distances, poverty and stigma, most children never reach a clinic. This means they are left ill with little care at home. However, in many regions there are community-based workers such as community health workers and home-based carers who could potentially deliver home-based care.
Results / Comments: A programme consisting of training and support for chronically ill children, caregivers and health care providers has already been developed and evaluated in a health care facility using a manual, videotaped demonstrations and support groups. We have been using this experience as the basis of programme development for home-based care for young children affected by HIV/AIDS. The development of the programme is being done principally in KwaZulu Natal, South Africa, but in close consultation with groups working in palliative care and child health in Kenya, Uganda and Zimbabwe. The training module aims to help community-based health workers teach caregivers how best to provide responsive care to the HIV infected/affected children 0-7 years of age. This includes addressing their palliative care needs and supporting their cognitive, social and emotional development. It also aims to provide guidance, support and care for affected parents, other caregivers and uninfected siblings. The work is driven by 6 key themes: encouragement of sensory and motor stimulation, responsiveness to crying and distress, dealing with stressful palliative care and routines, promotion of growth and health, early disclosure and age-appropriate communication, and dealing with emergencies and knowing when to get additional help. The project will also encompass the principles included in the WHO Care for Child Development initiative.
Discussion: The programme will build on available home-based care models and experience in palliative care and adapted for the care of young children in the home with support from community-based para-professionals and home visitors. After adaptation the programme will be pilot tested among caregivers and para-professionals for feasibility and socio-cultural fit. Supportive materials, including manuals and teaching materials and a DVD, will be developed and subject to preliminary qualitative testing in preparation for a more rigorous, larger scale evaluation. At all stages there is extensive consultation with other stakeholders and NGOs. The difficulties and experience of utilising techniques and care procedures developed in a clinical facility and translating them into home care will be discussed.
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