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

Christian Elias Meagher; Didu S Kariyawasam; Kristine A Elias Concepcion; Russell Dale; Kate Hetherington; Shekeeb Mohammad; Elizabeth Emma Palmer; Susan Woolfenden; Michelle Anne Farrar

doi:10.1136/archdischild-2024-327914

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

Arch Dis Child. 2024 Nov 19:archdischild-2024-327914. doi: 10.1136/archdischild-2024-327914. Online ahead of print.

Authors

Christian Elias Meagher¹, Didu S Kariyawasam^{1

2}, Kristine A Elias Concepcion¹, Russell Dale^{3

4}, Kate Hetherington^{1

5}, Shekeeb Mohammad³, Elizabeth Emma Palmer^{1

6}, Susan Woolfenden^{7

8}, Michelle Anne Farrar^{9

2}

Affiliations

¹ Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia.
² Department of Neurology, Sydney Children's Hospital Network, Sydney, New South Wales, Australia.
³ Department of Neuroscience, Children's Hospital Westmead, Westmead, New South Wales, Australia.
⁴ Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
⁵ Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospitals, Sydney, New South Wales, Australia.
⁶ Centre for Clinical Genetics, Sydney Children's Hospital, Sydney, New South Wales, Australia.
⁷ The Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, Australia.
⁸ Population Child Health Clinical Research Group, University of New South Wales, Sydney, New South Wales, Australia.
⁹ Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia m.farrar@unsw.edu.au.

PMID: 39521449
DOI: 10.1136/archdischild-2024-327914

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.

Keywords: Health services research; Neurology; Paediatrics; Therapeutics.