Abstract
BackgroundClinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children.ObjectiveThe aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience.MethodsOne hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members’ evaluations of the discussions.ResultsPersons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others’ experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members.ConclusionsOnline focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience.
Highlights
Focus group discussions is an established mode for collecting data that have the possibility to, in some ways, move beyond individual interviews by simultaneously taking different perspectives and opinions into account when letting participants interact during a moderated discussion [1,2]
The aims were to investigate what adolescent and young adult survivors of childhood cancer think about the risk of being infertile and how they reason about having biological children [5]
The response rate was higher among those diagnosed with solid tumors than among those diagnosed with central nervous system (CNS)-tumors (n=103, 39% vs. n=30, 27%; χ2= 4.89, P =.03)
Summary
Focus group discussions is an established mode for collecting data that have the possibility to, in some ways, move beyond individual interviews by simultaneously taking different perspectives and opinions into account when letting participants interact during a moderated discussion [1,2] Such discussions may be performed online [3], which can increase response rates in groups comfortable using computers (eg, young populations) [4]. There is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. Objective: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. Conclusions: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience
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