Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer

Abstract

The questionnaire developed has demonstrable face and content validity and acceptability. Unmet needs are prevalent among parents and carers of AYA cancer survivors, suggesting the need for further psychometric testing of the measure.

Unmet needs, anxiety, depression, and quality of life among caregivers of adolescents and young adults with cancer: A cross-sectional study

“…One study found that 28%–36% of the parents and other caregivers of AYAs with cancer had a high or very high level of unmet needs, particularly related to information about the long-term effects of treatment and the young person's fertility. 9 In another study, similar findings were found. 10 The parents of AYAs with cancer had a high level of unmet need for information.…”

Information needs in parents of long‐term childhood cancer survivors

“…They reported that parents had information needs especially on fertility and post‐treatment challenges and the desire to receive the information in a written format, like an information booklet. Other studies assessed needs in a broader way and found that information need was the most prevalent unmet need .…”

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial

“…Unmet cancer-related needs. We used a subset of 17 items from the Cancer Needs Questionnaire for Parents/Carers of Adolescents and Young Adults with Cancer [ 62 ] to gauge support person unmet needs over time.…”