Getting the ending right - feeling prepared to move into survivorship care when active treatment finishes

The end of treatment for childhood cancer can be a time of celebration for families, but it can also be a time of worry and uncertainty. Families must be given the right care, information, and support which meets their needs as they move into survivorship care. However, international research has shown that there are gaps in the information children and families get at the end of treatment. It is vital that families are given information about their child’s cancer and treatment, possible late effects, and plans for follow-up. 

Based at the University of Surrey, Susie Aldiss wants to improve the information given at the end of active treatment. She will look at what gaps there are for families in the UK using specially developed questionnaires. Question topics relate to different areas of information given, like side effects, late effects, and education. Children, young people and parents/carers will also have the choice to take part in an interview, to share their experiences in more detail. Her project will include any families with a child that has finished treatment in the past four months across the UK’s Principal Treatment Centres. 

Susie Aldiss’ team will also interview professionals who work with families at the end of treatment. They hope to find out what information is given to families, how it is given, what resources are used and how much the child is involved in these conversations. 

The researchers hope to find out:

• What – what types of information are shared and in what format?
• When – when are families given this information?
• Who – who is giving the information, and who is involved in the conversations?

They will examine the information from various perspectives (child, young person, parent, carer, and professional) to identify if there are gaps, and whether there are preferences for what is shared, when and how. For example, the end of active treatment is a significant event, and may not be an appropriate time to talk about follow-up care and what happens next. 

Families want to ensure their children and young people are informed enough to make the best decisions. Susie Aldiss hopes that looking at the ‘who’, ‘what’ and ‘when’ of these discussions will help us improve our understanding and support of children’s needs.