PLANET study: Planning for End of Treatment – sharing information to prepare children, young people and families to move into survivorship care when active treatment finishes

Research summary

Previous research has highlighted that children,young people and families have unmet information needs at the end of treatment. We do not currently know whether children,young people and families in the UK are receiving the information they need at the end of treatment and how far children and young people are included in the conversations. Provision of information at the end of treatment sets the foundations for children and young people being able to successfully engage with future long-term follow up services and take responsibility for their own health as they move into adulthood. Keller et al. (2020) have developed and validated a questionnaire (in the United States) to assess the psychological and educational needs of children,young people and their parents/carers at the end of successful treatment for cancer. We will use this questionnaire to investigate the provision of information for children,young people and parents/carers at the end of treatment. We will learn from families through these questionnaires and interviews about information sharing at this time,its openness,inclusion,content and gaps. We will also learn from health professionals about the process,challenges and facilitators,how they work with parents/carers to involve their child,at the time or later. We want to understand the views of professionals and families,find out any unmet needs,and the best ways to address these. Investing in making sure children and young people are prepared for this period of their life is important,engagement and control through knowledge and agency of their own bodies,cancer and treatment,begins at the end of active treatment as we prepare families for what happens next and how parents/carers can support their children REFERENCES Keller,M.,Ruiz,T.,Needham,A.,King,C.,Hart,L.,Holden,E.,& Lucas,R. (2020b). Development and Content Validation of End of Treatment Questionnaires for Children With Cancer. Journal of Pediatric Oncology Nursing,37(2),128–135.

Principal Investigator

Dr Amy Mitchell

Contact us

Email: rhiannon.collins@ouh.nhs.uk

IRAS number

345685