As HIV/Aids increases in Zimbabwe, millions of children are becoming the sole carers for dying parents and siblings. Left to cope without the usual recourse of an extended family, which is becoming increasingly overburdened and unable to cope as tradition expects, children as young as nine are nursing their dying parents, many themselves facing the knowledge that they are infected and will die alone. Here’s new GLI Networker Val Maasdorp’s report.
Founded in 1979, Island Hospice was the first organisation in Africa to provide palliative care and support to people with terminal illness, their families and carers, and to offer a comprehensive therapeutic service for the bereaved. The Harare-based organisation has evolved to address a growing reality in Zimbabwe, that of child carers.Over the years, Island Hospice has adapted to the changing face of the disease pattern to expand its activities within its community and institutional (hospital, clinics, children’s home) based programmes.
Through training, networking, community partnering and direct service, the organisation is providing a vital service to some of the world’s most vulnerable children and making a huge difference to their lives and the lives of those they care for.
Island Hospice, which provides most of its primary services to people in their own homes, recognises that the majority of these young carers are not equipped with the necessary knowledge and skills to care for the terminally ill. Working with the children individually and in groups, the organisation equips them with the practical skills they need to provide care effectively, but also focuses on the children’s emotional needs as they face the isolation and stigma associated with their position, their bereavement and, in some cases, the knowledge of their own illness.
By recognising children as individuals and giving them a voice, Island Hospice’s work has centred on their needs. This has in itself changed the way the children see themselves and reduced stigma. It has also improved the quality of their care of relatives, lessened their isolation by enhancing community support networks, and allowed any bereavement issues to be addressed.
In November 2007, Island Hospice became the first recipient of the 2007 STARS Impact Award in the category of Health. The Awards are given by the STARS Foundation a London-based charitable foundation that works to improve the lives of disadvantaged children around the world. The annual Awards recognise three organisations operating in the fields of health, education and protection which have the greatest impact on the lives of children through their commitment to good practice. Each recipient of the award receives US$100,000 in unrestricted funding as well as consultancy support.
Since Island Hospice received the award, the political and economic situation in Zimbabwe has deteriorated dramatically, affecting many more terminally ill and bereaved children. Despite the magnitude of the demand, Island Hospice has been able to strengthen its work in the provision of holistic support to young carers thanks to the Award funding received from the STARS Foundation.
The STARS Impact Award has provided Island Hospice with the opportunity to further expand its remarkable work. With the $100,000 of unrestricted funding it received, Island Hospice has increased the counselling services available to these young carers by extending them into three new paediatric clinics in Chitungwiza, Mabvuku and Epworth, reaching approximately 410 children to date. It also extended a successful pilot project into these clinics, which provides non anti-retroviral medications to children, to combat opportunistic infections and rashes.
The Award funding has enabled the procurement of medication that is presently financially prohibitive in Zimbabwe’s hyper-inflationary environment. Because the health status of the children has improved, this has assisted in reducing the burden of care by parents at home, and the coping skills of families and communities have been enhanced as a result. Island Hospice has also been able to widen its network and advocacy for children, an example of which has been the provision of school fees for some children by other organisations.
Current challenges and overcoming them
Island Hospice faces many challenges due to the unique situation it faces in Zimbabwe. The volatile environment that prevailed during the months surrounding elections made it more difficult than usual for staff to carry out their scheduled duties. Understandably, children and their parents also found it difficult to attend the clinics during this period.
Feeding programmes were the subject of a recent ban, which made it very difficult to provide nutritional supplement services. Furthermore, the rapid decline in the already serious economic situation resulted in pharmaceutical companies manufacturing some essential drugs inconsistently. As a result, Island Hospice staff witnessed deterioration in the health status of some of the children.
Despite these obstacles, Island Hospice has continued to identify and address the growing needs effectively. Island Hospice works with grass roots community and this assisted the organisation to strengthen its work and integration.
Given the extreme deterioration of Zimbabwe’s economy, it is unsurprising that most people are currently turning to services such as the ones that Island Hospice offer. Indeed, with the health care system becoming less viable, the comprehensive services that Island Hospice is offering out of these paediatric clinics is essential.
What they envision to achieve over the next few years
Having been in practice in Zimbabwe for almost 30 years, Island is no stranger to a challenging operating environment. They see the next few years presenting more opportunities to creatively develop pertinent services for the children in these communities. Whilst consolidating the existing services, and strengthening the palliative and bereavement care skills of their community based partners, this resourceful organisation is constantly envisaging innovative programmes to address the myriad of needs. Whether or not change brings about rapid investment in the country, these children will still be enormously emotionally disadvantaged. There is no chance that the workload for Island hospice will diminish for the foreseeable future.