Abstract / Summary
Introduction: Children must remain still during proton therapy (PT) to ensure precise treatment delivery. For some children, distress, separation from parents, or difficulties coping with the treatment situation necessitate treatment under anaesthesia. This study aimed to explore children's and parents' experiences of PT delivered with or without anaesthesia, to inform the development of supportive interventions in paediatric PT intended to reduce the use of anaesthesia. Methods: Participant observations informed the development of interview guides. Children were interviewed using photo elicitation, and parents were interviewed using semi-structured interviews. Data were analysed using thematic analysis. Results: Five children and eight parents from six families participated. Anxiety emerged as a central experience, although with different expressions for children and parents. Children described anxiety as tied to the treatment situation, whereas parents described anxiety related to separation, uncertainty, and anaesthesia. Four themes were identified to help manage anxiety: control, predictability, information, and care through relationships and continuity. The findings suggested that awake treatment may be better supported when these needs are addressed. These findings informed the development of a targeted intervention consisting of preparation and information, exposure and training, and care and continuity. Conclusion: PT was experienced as demanding by children and parents, but anxiety did not appear to preclude awake treatment. Rather, the findings suggest that treatment-related anxiety became more manageable when needs for control, predictability, information, and care through relationships and continuity are addressed. These findings provide the basis for developing interventions in paediatric PT to reduce the use of anaesthesia.