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

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.

COI Statement

Competing interests: CEM and KAEC received funding for research through the Cerebral Palsy Alliance Research Foundation. DSK received speaking and lecture fees from Biogen, Novartis and Roche. MAF received consulting, speaking and lecture fees from Biogen, Novartis and Roche. No competing interests declared for RD, KH, SM, EEP and SW.

Article info

Journal issue:

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Doi:

10.1136/archdischild-2024-327914

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