Butterfly House: caring for children with HIV/AIDS and other life-threatening illnesses in South Africa
The Fund is investing significantly in expanding training for children's palliative care in sub-Saharan Africa. A day spent by the Fund's writer at Butterfly House, a programme run by Drakenstein Palliative Hospice in the Western Cape, shows how with trained staff and the right resources, holistic children's palliative care can be delivered well in even the poorest communities.
Around 18.1% of South Africans are currently living with HIV/AIDS: 5.7 million people, including 230,000 children, making South Africa the country with the largest number of infections in the world.
I'm visiting Fairyland, a township near the town of Paarl in the winelands of the Western Cape, where Elizabeth Scrimgeour, Executive Director of the local hospice, Drakenstein Palliative Hospice, estimates that the HIV prevalence in the direct vicinity of the Butterfly House programme could be as high as 50%. The majority of residents are migrants, a group which is very vulnerable to infection.
Under Elizabeth's management, Drakenstein Palliative Hospice provides services to around 300 people with life-limiting illnesses in the surrounding health district every month, of which around two thirds have HIV/AIDS. In 2007 Drakenstein extended its services into the heart of Fairyland by establishing Butterfly House, a palliative care resource centre specifically designed to support people in the community living with HIV/AIDS and other life-limiting illnesses and their families.
As well as providing clinical services - an outpatient clinic, sessional doctors, five professionally qualified nurses and an 18-strong team of carers who visit patients at home - Butterfly House offers a whole range of other services and activities aimed at ensuring that both patients and their families have the best quality of life possible. On the staff team, there are also three professional social workers, a sessional counsellor, massage therapist and play therapist, and the organisation employs two full-time teachers and three youth workers.
Butterfly House provides for all ages, but when you walk in the door, its brightness and warmth immediately tell you that it's a place where children are especially cherished. Prevention of Mother to Child Transmission programmes (PMTCT) for HIV have been scaled up in South Africa in recent years and the most recent statistics suggest that rates of infection from mother to child are very slowly falling. However, vertical transmission of HIV from mother to child is still the second most predominant route of infection with 100,000 babies contracting the disease this way every year. At Butterfly House, 80% of people cared for there are children (infected and affected by HIV/AIDS) and the Hospice has around 220 potential orphans and vulnerable children on its books at any given time.
‘Children with life-limiting conditions are still children', says Joan Marston, Paediatric Palliative Care Manager at the Hospice Palliative Care Association of South Africa (HPCA). ‘They need to live as normally and fully as possible, with their families and in their communities, and they have the right to the same play and development opportunities that other children have too.'
Butterfly House is making sure that in Fairyland they do. Its childcare programme currently hosts around 50 pre-school children, who have the run of a sunlit, toy-filled playroom. 70 primary school children regularly attend homework clubs and life skills sessions, where they can write poetry and take part in drama, dance and crafts, and another 40 high school students come for life skills, academic support and their own teenager-friendly therapy group. Soon, because of Elizabeth's brilliant ability to enlist the support of partners from near and far, Butterfly House will be able to offer IT classes too.
One of Butterfly House's most treasured places is a wooden hut called ‘Zozo', which means ‘hut' or ‘shack' in Xhosa. Zozo is the play therapy centre and it is beautiful. There is even a puppet theatre. Butterfly House offers therapy to children who have suffered severe psychological stress as a result of illness or the death of a parent or sibling. But HIV positive or not, children often have to grow up too quickly here, and Zozo is designed to be their space, where they can come and just play under the supervision of a caring adult or play auntie.
However, most children in sub-Saharan Africa with life-limiting illnesses like AIDS or cancer, even in South Africa, the most developed country on the continent, will not have access to the kind of child-centred care that Butterfly House is offering. Palliative care for children has lagged behind the development of palliative care for adults all over sub-Saharan Africa and there are still hundreds of thousands of children across the region, who die without ever seeing a doctor, let alone with access to the kind of treatment or care we expect for children in the developed world.
One of the biggest barriers to access is the shortage of healthcare staff with the specialist skills needed to deliver children's palliative care, which is why the Fund - with its country partners like Hospice Palliative Care Association of South Africa (HPCA) - is focusing a significant amount of time and resources on supporting the development of high-quality and specialised training.
In 2009 we made grants to three different organisations - HPCA in South Africa, PASADA in Tanzania and Mildmay in Uganda - towards setting up beacon training centres for children's palliative care.
The idea behind these centres is to provide high-quality training for health workers in children's palliative care, covering the many issues which are crucial to delivering holistic palliative care to children. Training modules will include communication, play and development, managing pain in children and helping both the child and their parents to deal with the prospect of death and bereavement.
The centres will also offer students clinical placements to give them vital on-the-job experience. In South Africa, groups of clinical placements have been formed into cluster sites in four provinces (Gauteng, KwaZulu Natal, the Free State and the Western Cape), so that students can experience palliative care in different organisations and settings. Drakenstein Palliative Hospice and its Butterfly House programmes, will be one of the placement sites in the Western Cape, which means that students will be able to experience for themselves the hope that palliative care services like Butterfly House bring to both individuals and communities.
Joan Marston is convinced of the importance of the beacon training centres:
‘No child should have to live with unnecessary pain and suffering,' she says. ‘This pioneering project has the potential to hugely improve the quality of lives of a great many children and their families and to improve the competence of health professionals to provide palliative care to children.'
