Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study.

Abstract

Objective: Parents and caregivers of children with neurological conditions express interest in new and developing treatments and trials; however, they have limited knowledge of, and access to, reliable information. This study aims to empower and equip decision-making and support communication in the application of advanced neurotherapeutics and personalised medicine, covering gene therapy, stem cell therapy, neurostimulation and neuroimmunotherapies.

Design: A suite of online psychoeducational resources has been created and evaluated to establish implementation success. A codesign approach was incorporated in this mixed methods cross-sectional study.

Setting: Quaternary children's hospital network.

Patients: Across three phases, 105 parents of children with neurological conditions, clinicians and advocacy group representatives participated.

Interventions: A suite of psychoeducational resources about advanced therapeutics in clinical trials was codeveloped with parents and evaluated.

Main outcome measures: Acceptability, Appropriateness, and Feasibility of Intervention Measures, Preparedness for Decision-Making Scale, Decision Self-efficacy Scale and open-ended qualitative feedback.

Results: The resources provide an acceptable, appropriate, credible and feasible source of information. Parents also established they help with preparedness and confidence in decision-making regarding the applications of neurotherapeutics.

Conclusions: This study and its results are aligned with, and supports, the needs and preferences of caregivers of children with neurological conditions, promoting information provision, healthcare engagement and clinical decision-making. These resources will form a foundation for accurate and contemporary scientific knowledge that is distilled and available to a wide range of stakeholders.