Parents' experiences of having their children take part in participatory action research creating a serious game about radiotherapy

INTRODUCTION: Radiotherapy (RT) is one of several treatment modalities used for children diagnosed with cancer. Several studies have designed interventions aimed to alleviate the stress that can occur in conjunction with RT. To include children in the design of interventions is rare and dependent on the parents giving consent to participation in research on their children's behalf. The aim was to illuminate, from the parents' perspective, the experience of their children being part in the co-creation of a serious game and their previous experiences of RT. METHODS: Ten parents of children taking part in a participatory action research study of the development of a serious game were invited to an interview and seven parents consented. An inductive, manifest content analysis was performed. RESULTS: The analysis resulted in an overarching theme: Parents' pre-understanding from their child's cancer treatment created a sensitivity to their child's wishes and a willingness to contribute to science. Four categories are presented: Intrinsic factors influenced the intent to participate, Extrinsic factors that had an effect on participation, Parents role in the game development, and Radiotherapy impinged the child and the parent. CONCLUSION: To be able to pay it forward to healthcare and other families with a child diagnosed with cancer was a contributing factor for parents' willingness to consent to participation after their children had undergone RT, especially since their children wanted to do so. Parents indicated interest in the developmental process and in following their children being part of the creation of a serious game about RT. IMPLICATION FOR PRACTICE: To understand why parents allow their children to participate in studies creates opportunities for the research community to structure studies that facilitate participation