The cancer Support Person's Unmet Needs Survey

Abstract

A rigorous psychometric methodology was used to develop a measure of unmet needs for cancer survivors' principal support persons. Principal support person was defined as "someone you can count on and who helps you with your needs." Development of the domains and the items followed an extensive literature review, iterative input from support persons, and consultation with health professionals and front-line staff working with cancer survivors and their supports. Cognitive interviews helped clarify item wording, and the draft questionnaire was reappraised by a group of support persons. The questionnaire was reduced to 90 items and sent to a stratified, random sample of cancer survivors selected from a provincial population-based cancer registry. They were asked to give the survey to their support person. The resulting 78-item Support Person Unmet Needs Survey has high acceptability, item test-retest reliability, internal consistency (Chronbach alpha = .990), and face, content, and construct validity. It captures 6 domains of unmet needs and accounts for 73.5% of total variance: Information and Relationship Needs (27 items, 22.1% of variance), Emotional Needs (16 items, 15.2%), Personal Needs (14 items, 14.0%), Work and Finance (8 items, 8.8%), Health Care Access and Continuity (9 items, 8.6%), and Worries About Future (4 items, 4.8%). This instrument will be of use where there is an interest in examining the impact of cancer not only on cancer survivors but also on their identified principal support persons.