Support needs of young brain tumour survivors and their caregivers
Research type
Research Study
Full title
Supportive care needs of teenage and young adult childhood brain tumour survivors and their caregivers.
IRAS ID
245810
Contact name
Florien Boele
Contact email
Duration of Study in the UK
1 years, 10 months, 1 days
Research summary
Brain tumours are one of the most common childhood cancer registrations in the UK. That said, young survivors are now living longer. Advances in medical treatment have meant that in many cases, childhood brain tumours are not a deadly disease but a chronic one. After treatment survivors may experience social, cognitive and physical issues; that often become more apparent as the survivor enters young adulthood. Teenager and Young adult (TYA) survivors can experience issues that are different from survivors still in childhood or older adulthood. For example, TYA survivors are less likely to go onto higher education, attain a job, marry or have children.
Responsibility for caring and supporting survivors in the longer term is often met by the survivors’ family. Caregivers alongside emotional support also provide practical support, including household tasks, medication administration, and managing financial affairs. Due to the demands of caring for these survivors caregivers can also experience social, emotional and psychological issues.
There is very little known about the support care needs of TYA survivors or their caregivers. Therefore, the aim of the study is to gain an in-depth understanding of the supportive care needs of teenage and young adult childhood brain tumour survivors and their caregivers.
Participants will be recruited from the Oncology Long Term Follow-up clinic at Leeds Teaching Hospital. Participants will include childhood brain tumour survivors aged 13-30 and their primary caregiver. We will use online questionnaires and semi-structured interviews to identify of the extent and importance of needs.
Further knowledge in this area can result in valuable learning and practical implications being made to improve and tailor supportive care to better meet survivors’ and caregivers’ needs. This, in turn, could potentially improve their quality of life substantially.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
18/YH/0312
Date of REC Opinion
26 Sep 2018
REC opinion
Further Information Favourable Opinion