Adolescents and young adults (AYAs) who have a family member (parent or sibling) diagnosed with cancer typically face significant changes in family dynamics, distress and unmet needs. Previously there were no tools for measuring and identifying the unmet needs of this population, reducing the ability to provide targeted support services or identify gaps in service provision.
The aim of this project was to develop and validate unmet needs measures for AYAs who have a family member diagnosed with cancer, and to implement usage of these measures.
Unmet needs measures for offspring (Offspring Cancer Needs Instrument; OCNI) and siblings (Sibling Cancer Needs Instrument; SCNI) were developed following focus groups and telephone interviews with young people (n = 11 siblings; n = 14 offspring), a literature review, and a staff survey (n =26). Following this, the SCNI and OCNI were piloted (n = 74 siblings; n = 116 offspring) and validated (n = 106 siblings; n = 256 offspring).
The final OCNI (47 items) and the final SCNI (45 items) have similar domain structures including items addressing unmet needs associated with information, practical assistance, ‘time out’ and recreation, dealing with feelings, support from friends and other young people, understanding from my family, and for the SCNI, the sibling relationship. Both measures have excellent psychometric properties (α = 0.98 SCNI; α = 0.97 OCNI). For both measures, the greatest proportion of unmet needs were associated with the information domain.
The development and validation process for the OCNI and SCNI has resulted in measures for unmet needs for AYAs who have a family member with cancer that can be confidently used. Clinically, the measures have been integrated into individual assessment processes, and are used to identify individual support needs and gaps in service provision.