Peer-reviewed article
Codesigning Communication Interventions With Adolescents, Parents, and Clinicians in Pediatric Oncology: A Feasibility Study.
Caroline Christianson, Harmony Farner, R Elyse Heidelberg, Heather Brandt, Pamela Hinds et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study tested whether adolescents with advanced cancer, their parents, bereaved parents, and medical clinicians could work together to design communication interventions for pediatric oncology. The researchers held eight virtual codesign sessions over five months with 21 participants including four young patients. The approach was feasible, with 92.5% attendance, and participants reported that working together helped them understand different perspectives and develop more patient-centered communication strategies.
Key points
- 21 participants contributed to codesign: 4 adolescent patients, 5 parents, 4 bereaved parents, 5 oncologists, and 3 psychosocial clinicians
- Enrollment rate was 68% (13 of 19 eligible patients and parents invited) with mean attendance of 92.5% across sessions
- Patients and parents valued the opportunity to share their experiences and contribute to legacy; clinicians reported that hearing patient perspectives improved their own communication practices
- Participants across all groups highlighted benefits of shared dialogue including learning across perspectives, connection, and attention to individualized communication needs
- Mixed-participant codesign was feasible and may support development of patient-centered communication interventions in pediatric oncology
Limitations
This is a feasibility study with a small sample size and does not measure whether the designed interventions actually improve patient or parent outcomes. The study does not report whether the communication interventions developed were subsequently tested or implemented.
Abstract
OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: ClinicalTrials.Gov Identifier: NCT05116566.
Findings the Hub has extracted
Each claim below is labelled by its type of design and links back to this report.
- Intervention
- Mixed-participant codesign process involving eight longitudinal virtual sessions over five months with adolescent patients, parents, bereaved parents, oncologists, and psychosocial clinicians working together to develop communication interventions
- Population
- Adolescents aged ≥12 years with advanced cancer (n=4), parents of children with advanced cancer (n=5), bereaved parents (n=4), oncologists (n=5), and psychosocial clinicians (n=3)
Key finding
Enrollment feasibility: 13 of 19 eligible patients and parents enrolled (68% enrollment rate)
Christianson et al. · PubMed (US National Library of Medicine) · 5 May 2026