Children's experiences of coping with proton radiotherapy: A mixed-method study at a Swedish nationwide clinic

Children have reported to be afraid of and hold misconceptions about what radiotherapy involves. They have the right to be informed in an age-appropriate way before commencing radiotherapy (RT). The aim was to investigate children's perspectives of coping with RT: information, knowledge, self-efficacy, well-being and distraction methods, as well as experiences of a serious game.

A mixed-method study was conducted at a Swedish clinic with nationwide uptake. Enrollment lasted 1.5 years, and 22 out of 26 eligible children aged 5-13 years participated. Repeated measures collected data on five occasions during treatment period.

Children reported preferring to receive information from healthcare professionals, the serious game, a model of the radiotherapy machine, and pictures or books. The majority reported having pretty good to very good knowledge of why they were receiving RT and how the procedure was performed. Awake children reported managing the procedure with good self-efficacy. Some chose to listen to music or a book, while others preferred silence during the treatment. Children described that attending treatment could be a little frightening, and the game helped to alleviate those feelings.

Children used different sources of information to prepare for RT. They should be offered a range of methods, allowing them to decide what they prefer.

Children should be provided with clear, age-appropriate, and multimodal information to prepare them for proton therapy, and serious games can be used as a tool for learning about the treatment. Healthcare professionals should prioritize oral communication, as well as introducing children to the treatment environment in advance.