Shielding children from suffering
Sick children suffer greatly from pain and other symptoms, but we do not know enough about the needs of sick children and their families caring for them at home in southern Africa. LAURA CAMPBELL, JOAN MARSTON, LINDA RICHTER and ALAN STEIN are conducting a study on children`s home-based palliative care in order to develop a programme for home care.
Palliative care is a relatively new field in medicine and nursing, and focuses on care of those who have an illness that may shorten or limit their life, such as AIDS or cancer. Palliative, meaning a cloak or a shield, aims to cloak patients with care and shield them from suffering.
But there is growing recognition that the needs of children who have a life-limiting illness differ in significant ways from those of adults.
Palliative care originated in the hospice movement in the United Kingdom in the 1970s as a response to the realisation that the symptoms of those who faced death were severe, frequent and largely unmet by healthcare providers. It is a holistic, humanistic approach to care that is known to improve the quality of life of patients and their families. It also can improve the morale of healthcare providers through their active involvement in alleviating suffering and providing support.
Traditionally, palliative care centred on adults. But there is growing recognition that the needs of children who have a life-limiting illness differ in significant ways from those of adults. As a result, children's palliative care is evolving rapidly as a sub-specialty in South Africa and elsewhere in southern Africa.
What palliative care do children need?
Children are more likely to face illness and death in Africa than anywhere else in the world and, in southern Africa, the magnitude and impact of the AIDS epidemic on young children is well documented. Many children who require antiretroviral therapy, cannot access it and as their disease advances, they may suffer greatly with symptoms such as pain, diarrhoea, nausea, sores and rashes.
Young children with AIDS may be confused, frightened, neglected and shunned in their homes because their families fear that their disease will spread and because of stigmatisation by neighbours. There is unquestionably an urgent need to improve the care of sick children.
What is home-based care?
This project builds on a prior study to improve the hospital care of young children with life-threatening illnesses, who experience repeated hospitalisations and worsening pain and discomfort (Govender et al, 2006). In an attempt to enhance healthcare coverage in South Africa, the government has adopted a strategy of home-based care premised on the belief that families, with support, are best placed to deliver the continuum of palliative care from HIV-infection through to illness and death. In 2008, the health department estimated that there were over 800 organisations offering home-based care. Home-based care workers are generally a cadre of informal healthcare providers and are in a unique position to provide holistic, humanistic care for suffering children and their families. Some home-based care workers offer palliative care or components of palliative care. However training in palliative care, especially in palliative care for children, is not usually comprehensive or standardised.
The study aims to review the needs of sick children and those who care for them in order to develop a child palliative-care support and training package for home-based care workers.
Continuing a legacy of care
The study aims to review the needs of sick children and those who care for them in order to develop a child palliative-care support and training package for home-based care workers. It is based on a collaboration between the HSRC, the Hospice and Palliative Care Association and Oxford University, and is funded by the Diana, Princess of Wales Memorial Fund.
The study has used innovative methods such as ‘story telling' and ‘photovoice' to elicit knowledge and experience from home-based care workers and from caregivers of sick children. The questions we are addressing are:
- What care do sick children at home need?
- How can families be best supported to provide this care?
- What training and support do home-based care workers need?
Disseminating the findings
It is envisaged that our findings will guide palliative care providers throughout southern Africa. We will develop a support and training package for home-based care workers to facilitate their care of sick children at home and give support to their families. The package will be written from the perspective of a home-based care worker and the message will be simple: cloak the children with your care and shield them from suffering. The written materials are being supplemented with films to illustrate principles of care and support.
Dr Laura Campbell is a project coordinator, Child, Youth, Family and Social Development (CYFSD); Sister Joan Marston is a paediatric palliative care coordinator, Hospice Palliative Care Association; Professor Linda Richte is the executive director, (CYFSD); Professor Alan Stein heads Child and Adolescent Psychiatry, University of Oxford.