Posted on 10 October 2002
Major progress has been made in the clinical treatment of childhood cancer or leukaemia, with more than 70 per cent of those diagnosed surviving, but little is known about the long-term psychological and social effects. Support services tend to vary between different treatment centres and more information is needed about what children and families want.
Professor Tricia Sloper is leading a team in the University of York's Social Policy Research Unit to conduct a 20-month study. This will look at the help children and their families in the UK receive from different organisations, establish their needs, and compare the support provided with what the children and their parents say they want. The research team has been awarded a major grant by the Childhood Cancer and Leukaemia Charity (CLIC) for this work.
Professor Sloper said: "Several studies have shown that parents are highly distressed during the early days of the diagnosis and treatment, and for some families this can last for years, even when the child is in remission. Children too can continue to experience emotional effects even after treatment has finished. Support is clearly important and we know that often people find the treatment centres very helpful, but have problems with help at home."
"We know there can also be concern over the availability of counselling, communications between hospital and community services, support as the active treatment is ending, and information for survivors."
Professor Sloper added: "Support across the UK varies. We will investigate patterns of provision and whether they actually meet children's and parents' views of their needs. The voluntary sector plays an important part in providing services and we hope that the research will help them with better information. CLIC has commissioned the research to inform developments in its own provision of services for children with cancer or leukaemia."
The research will begin with a postal survey to all 21 NHS paediatric oncology regional centres across the UK and key voluntary agencies working with the centres. This will give each centre the opportunity to highlight their own priorities, to identify gaps or duplication in provision, and to outline their ideas for improvements.
Focus groups and interviews with children and their parents will form the second stage of the research. They will be asked their perceptions of the service they receive at different ages, and at different stages of the illness, and how this can be improved. Twenty children aged between 10 and 18, and 36 sets of parents with children up to the age of 18, will be questioned.
The third stage will look in greater detail at the issues already raised, across a broader range of families. Two postal questionnaires, one for parents and carers, and one for children, will be sent to 300 families using 10 different treatment centres. The child's survey will be designed for youngsters aged eight and upwards, and will use simple language and graphics.