Co-designing a digital health app to manage pain in young children with cancer: report from the generative design phase of intervention development
Authors: Jibb Lindsay A. , Sivaratnam Surabhi , Hashemi Elham , Stinson Jennifer N. , Nathan Paul C. , Chartrand Julie , Alberts Nicole M. , Masama Tatenda , Pease Hannah G. , Torres Lessley B. , Cortes Haydee G. , Zworth Mallory , Kuczynski Susan , Fortier Michelle A. 
Published: November 2022

ABSTRACTPain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home, and digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children’s parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured co-design interviews. We conducted interviews until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child’s pain. The value of the app related to its capacity to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care. Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges associated with digital pain management related to potential burden of use for parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.AUTHOR SUMMARYThe lack of meaningful involvement of end-users in intervention development has been a key contributor to difficulties in effectively translating research findings into cancer practice and policy. There is a risk that without the active engagement of children with cancer and their families in designing digital health innovations, researchers and clinicians will fall victim to an unfortunate cycle of producing underutilized evidence—resulting in a limited impact on patient outcomes. Pain is a particular problem for young children with cancer and real-time digital health interventions may be solutions for accessible, effective, and scalable cancer pain management. We are using an established end user-centered co-design process to engage parents and pediatric oncology clinicians in the development of a cancer pain management app. Our work here summarizes the generative co-design phase of this process and the perceptions of parents and clinicians related to app usefulness and needed system features.