Research focus
This project is looking at information sharing with children, young people and families at the end of active cancer treatment, as they move into survivorship care. The end of treatment 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. International research has shown that there are gaps in the information children and families get at the end of treatment. We don’t currently know whether children and families in the UK are receiving the information they need at this time. This topic was identified as important in the Children’s Cancer Priority Setting Partnership, which asked children, survivors, families and professionals which topics they would like future research to focus on.
What will we do?
This project will include families with a child aged 0-18 years old who has recently finished treatment in a principal treatment centre. We’ll ask families to fill in an end-of-treatment questionnaire, which asks about the different areas of information given, like late effects, support and follow-up plans. As well as a parent/carer questionnaire, there’s a questionnaire for children aged eight and above to fill in themselves. Children, young people and parents/carers will have the choice to take part in an interview, to share their experiences in more detail.
We’ll also interview professionals who work with families at the end of treatment, asking them about what information is given to families, how it’s given, what resources are used and how much the child’s involved in these conversations.
What do we hope to find out?
Looking at what’s currently happening with information sharing at the end of treatment will help to identify what’s working well and where the gaps are, improving our understanding of what families need at this time.
We hope to find out:
- what types of information are shared and in what format?
- when are families given this information?
- who’s giving the information?
- who’s involved in the conversations?
We also want to look at whether there are preferences for what’s shared, when, and how. For example, the end of active treatment is a significant event, and may not be the best time for families to talk about and take in information about follow-up care and what happens next.
What might this lead on to?
The end-of-treatment questionnaire we’re testing in this project could be used by hospital teams as an aid for improving communication of information to better meet the needs of families. We plan for this study to lead to further work, with the development of an intervention or resource to improve the sharing of information with children and families at the end of treatment.
How will this research empower children, young people and their families?
When a child finishes treatment, it’s vital that the family’s given information about the child’s cancer and treatment, possible late effects, and plans for follow-up. There are many late effects of cancer and treatment, which families need to know what to look out for and how to get help if they need it. Giving information to children means that as they get older, they can build on this information and start to take responsibility for their own health as they become an adult
From Contact magazine issue 105 | Winter 2024
