Psychosocial needs of young people who have had Retinoblastoma
Research type
Research Study
Full title
A qualitative investigation into the psychosocial needs of teenagers and young adults who have had Retinoblastoma
IRAS ID
311279
Contact name
Nicola O'Donnell
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
2 years, 11 months, 2 days
Research summary
Retinoblastoma (Rb) is a rare eye cancer usually diagnosed in the first years of life, affecting 40-50 UK children a year. Although highly curable, the long-term impact of Rb and medical interventions can be marked and wide-ranging, including reduced vision, facial disfigurement, and secondary cancers. It is well recognised that this poses a range of psychological challenges to individuals as they grow older, yet there remains a lack of knowledge about how best to provide support. This research aims to develop understanding of the specific psychosocial risks and challenges perceived by teenagers and young adults living beyond Rb. This two-phase qualitative project will utilise focus groups with teenagers (age 13-19 years) and individual interviews with young adults (age 20-29 years) with a history of Rb. It is hoped that through these discussions, diverse experiences of living beyond Rb will be sought. In turn, this will complement findings from a systematic review to develop a co-designed intervention that addresses the specific needs of this population.
REC name
HSC REC B
REC reference
22/NI/0082
Date of REC Opinion
19 May 2022
REC opinion
Further Information Favourable Opinion