ScholarOne - Parents’ and children’s motivations for participating in a
randomized controlled clinical trial: AIDIT-QS
Abstract
Participation in a pediatric, complex randomized controlled trial (RCT)
might add to the family burden when a child is diagnosed with a severe
disease. This study explored parents’ and children’s motivation to and
experiences of participation in a research study shortly after the child
had been diagnosed with type 1 diabetes. Sixteen parents and nine
children were interviewed by an independent researcher about their
inducement, the decision-making process within the family which led to
their participation, and their experience of having done so. The result
showed that the parents wanted to contribute to improve treatment for
children with diabetes in general but also specifically for their own
child. Older children were more involved in the decision making than the
younger children. Study information needs to be communicated clearly and
effectively since decision-making based on information of a clinical
trial directly after the child’s diabetes onset proved difficult.