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Original research
Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study
  1. Christian Elias Meagher1,
  2. Didu S Kariyawasam1,2,
  3. Kristine A Elias Concepcion1,
  4. Russell Dale3,4,
  5. Kate Hetherington1,5,
  6. Shekeeb Mohammad3,
  7. Elizabeth Emma Palmer1,6,
  8. Susan Woolfenden7,8,
  9. Michelle Anne Farrar1,2
  1. 1Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia
  2. 2Department of Neurology, Sydney Children’s Hospital Network, Sydney, New South Wales, Australia
  3. 3Department of Neuroscience, Children's Hospital Westmead, Westmead, New South Wales, Australia
  4. 4Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
  5. 5Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospitals, Sydney, New South Wales, Australia
  6. 6Centre for Clinical Genetics, Sydney Children's Hospital, Sydney, New South Wales, Australia
  7. 7The Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, Australia
  8. 8Population Child Health Clinical Research Group, University of New South Wales, Sydney, New South Wales, Australia
  1. Correspondence to Dr Michelle Anne Farrar; m.farrar{at}unsw.edu.au

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.

  • Therapeutics
  • Paediatrics
  • Neurology
  • Health services research

Data availability statement

Data are available on reasonable request. Data that underlie the results reported in this article may be available to suitably qualified researchers on request, after deidentification. Applicants willing to receive the data should apply between 1 and 12 months after the manuscript has been published and should demonstrate that the proposed use of the data has been approved by an independent review committee identified for this purpose. The data request should be sent to the corresponding author, m.farrar@unsw.edu.au.

https://doi.org/10.1136/archdischild-2024-327914

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    Data availability statement

    Data are available on reasonable request. Data that underlie the results reported in this article may be available to suitably qualified researchers on request, after deidentification. Applicants willing to receive the data should apply between 1 and 12 months after the manuscript has been published and should demonstrate that the proposed use of the data has been approved by an independent review committee identified for this purpose. The data request should be sent to the corresponding author, m.farrar@unsw.edu.au.

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    Footnotes

    • X @shekeeb, @emmagenetics, @imichellefarrar

    • Correction notice This paper has been amended since it was first published. There was a spelling error in figure 2 and this has now been corrected.

    • Contributors CEM: Investigation, data curation, writing—original draft and visualisation. DSK, RD, KH, SM, EEP and SW: Writing—review and editing. KA: Conception, investigation, data curation and writing—review and editing. MAF: Conceptualisation, writing—review and editing and supervision. CEM is the guarantor. All authors read and approved the final manuscript.

    • Funding This work was supported by the Ainsworth Foundation (no award/grant number) and Cerebral Palsy Alliance (PRG09821). MAF is the recipient of an NHRMC (APP 1194940).

    • 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.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.