2021 Volume 58 Issue 3 Pages 275-282
The purpose of this study was to clarify information sources and participants’ satisfaction with them, information needs, and information sources needs regarding sexuality and reproduction among childhood, adolescent and young adult (AYA) cancer survivors. We conducted a cross-sectional, self-administered online survey among adult survivors who had been diagnosed with cancer at 0–29 years of age. Questionnaire items included information sources and participants’ satisfaction with them, information needs, and information sources needs regarding sexuality and reproduction. We used data from 107 participants (mean age of 31.2 years old). Their most common information sources were friends, school, and the Internet (74–81%). Less common sources were doctors (34%) and nurses (17%). The top information needs were as follows: effects of diseases and treatments on their ability to reproduce and how to deal with them; illness disclosure to partners and their families; and other survivors’ stories about romantic relationships and having children. The information sources needs were the Internet, booklets (about 50%), same type cancer survivors, and doctors (around 40%). The information needs included not only reproductive information but also illness disclosure and survivors’ stories. Results show that it is necessary to provide information that meets survivors’ needs. Survivors want more information than ever about reproduction from medical professionals, who must make efforts to establish an information provision system. In the future, further studies are necessary to investigate whether survivors’ information needs are being met and to provide information that improves their quality of life.
