The Development of an Instrument to Assess the Unmet Needs of Young People Who Have a Sibling With Cancer

Abstract

The psychosocial needs of young people (aged 12-24) who have a sibling with cancer are still comparatively underresearched and largely underserviced. Steps taken in the development of a needs-based measure, the Sibling Cancer Needs Instrument (SCNI), are presented, involving a qualitative exploration of needs (focus group with 4 young people, telephone interviews with 7 young people, and a staff survey) and a quantitative piloting of the resulting first version of the SCNI on 71 young people. Results are explored in relation to the 10 identified domains of need (information, peer support [friends], peer support [similar experience], sibling relationship/support, expressing/coping with feelings, access to support services, respite/recreation, acknowledgement/attention for self, instrumental support, and involvement in the cancer experience). The survey data showed that 75% of young people endorsed 10 or more needs, whereas 50% endorsed more than half of all 80 needs, and on average, participants reported 10 unmet needs. Correlations between needs and psychological distress scores are also explored. Initial reliability, and face and content validity for the SCNI encourage further development of the instrument to assist in better monitoring and to meet the various needs of this underserviced population.