Past Project

Development of unmet needs measures for adolescents and young adults with a parent or sibling with cancer

What is the project about?

Canteen developed the Offspring Cancer Needs Instrument (OCNI) and the Sibling Cancer Needs Instrument (SCNI). The questionnaires ask young people about their unmet needs that arise from having a parent or sibling with cancer, from a number of different domains of everyday life (for example, help dealing with feelings, information, support from other young people). The project aimed to evaluate whether the questionnaires effectively and accurately reflect the unmet needs of adolescents and young adults (AYAs) and explored how unmet needs contribute to distress and psychopathology.

  • Research has consistently shown the greater family-wide impact of cancer but little research to date has explored the unique situation of AYAs who are offspring or siblings of cancer patients.
  • Evidence-based and reliable measures of unmet needs enable professionals and researchers to quickly and reliably assess the needs of young people who have a parent or sibling with cancer.
  • Assessing unmet needs enables professionals to tailor support programs and interventions to the specific needs of AYAs.
  • The OCNI and SCNI have been developed in collaboration with The University of Sydney.
  • The development of the OCNI was supported by funding from Beyond Blue.
  • McDonald, F. E. J., Patterson, P., White, K. J., Butow, P., & Bell, M. L. (2015). Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer. Psycho-Oncology, 24(3), 333-340. doi: 10.1002/pon.3653
  • Patterson, P., McDonald, F. E. J., Butow, P., White, K. J., Costa, D. S. J., Millar, B., Bell, M.L., Wakefield, C.E. & Cohn, R. (2014). Psychometric evaluation of the Sibling Cancer Needs Instrument (SCNI): an instrument to assess the psychosocial unmet needs of young people who are siblings of cancer patients. Supportive Care in Cancer, 22(3), 653-665. doi: 10.1007/s00520-013-2020-3
  • Patterson, P., McDonald, F. E. J., Butow, P., White, K. J., Costa, D. S., Pearce, A., & Bell, M. L. (2013). Psychometric evaluation of the Offspring Cancer Needs Instrument (OCNI): an instrument to assess the psychosocial unmet needs of young people who have a parent with cancer. Supportive Care in Cancer, 21(7), 1927-1938. doi: 10.1007/s00520-013-1749-z
If you would like more information on the OCNI or SCNI, or would like to obtain a copy, please contact the research team on 1800 234 007 or email researchteam@canteen.org.au