Codesigning Communication Interventions With Adolescents, Parents, and Clinicians in Pediatric Oncology: A...

Adolescents and young adults are rarely included alongside parents and clinicians in codesign of interventions in pediatric oncology, particularly for sensitive communication topics such as prognosis. We examined the feasibility of mixed-participant codesign, including pediatric patients, parents, bereaved parents, and multidisciplinary clinicians, within the RIGHTime study.

We conducted eight longitudinal virtual mixed-participant codesign sessions across four sequential blocks spanning 5 months. Eligible participants included patients aged ≥12 years with advanced cancer, parents of children with advanced cancer, bereaved parents, oncologists, and psychosocial clinicians. Feasibility outcomes included enrollment and attendance. To characterize participants' experiences, we analyzed structured reflections from each session, eliciting perspectives on the benefits and challenges of the mixed-participant codesign approach.

Twenty-one participants contributed: patients (n = 4), parents (n = 5), bereaved parents (n = 4), oncologists (n = 5), and psychosocial clinicians (n = 3). Among invited patients and parents, 13/19 enrolled, and the mean attendance across four blocks was 92.5%. Reflections highlighted the value of shared dialogue, including learning across perspectives, connection, and attention to individualized communication. Patients and parents described gratitude and legacy-oriented motivations; clinicians described perspective-taking and incorporation of insights into communication practices. Across groups, reflections suggested that shared dialogue informed both intervention development and clinician communication practices.

Mixed-participant codesign that includes adolescents and young adults alongside parents and clinicians was feasible in pediatric oncology communication research. Participant reflections suggest this approach may support the development of patient-centered communication interventions and inform clinician communication practices. This model may be transferable to pediatric oncology settings where patient perspectives are essential to intervention design.

ClinicalTrials.Gov Identifier: NCT05116566.