Developing "My Asthma Diary": A process exemplar of a patient-driven arts-based knowledge translation tool

Mandy M. Archibald, Lisa Hartling, Samina Ali, Vera Caine, Shannon D. Scott

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

Background: Although it is well established that family-centered education is critical to managing childhood asthma, the information needs of parents of children with asthma are not being met through current educational approaches. Patient-driven educational materials that leverage the power of the storytelling and the arts show promise in communicating health information and assisting in illness self-management. However, such arts-based knowledge translation approaches are in their infancy, and little is known about how to develop such tools for parents. This paper reports on the development of "My Asthma Diary" - an innovative knowledge translation tool based on rigorous research evidence and tailored to parents' asthma-related information needs. Methods: We used a multi-stage process to develop four eBook prototypes of "My Asthma Diary." We conducted formative research on parents' information needs and identified high quality research evidence on childhood asthma, and used these data to inform the development of the asthma eBooks. We established interdisciplinary consulting teams with health researchers, practitioners, and artists to help iteratively create the knowledge translation tools. Results: We describe the iterative, transdisciplinary process of developing asthma eBooks which incorporates: (I) parents' preferences and information needs on childhood asthma, (II) quality evidence on childhood asthma and its management, and (III) the engaging and informative powers of storytelling and visual art as methods to communicate complex health information to parents. We identified four dominant methodological and procedural challenges encountered during this process: (I) working within an inter-disciplinary team, (II) quantity and ordering of information, (III) creating a composite narrative, and (IV) balancing actual and ideal management scenarios. Conclusions: We describe a replicable and rigorous multi-staged approach to developing a patient-driven, creative knowledge translation tool, which can be adapted for use with different populations and contexts. We identified specific procedural and methodological challenges that others conducting comparable work should consider, particularly as creative, patient-driven knowledge translation strategies continue to emerge across health disciplines.

Original languageEnglish
Article number186
Number of pages10
JournalBMC Paediatrics
Volume18
Issue number1
DOIs
Publication statusPublished - 5 Jun 2018

Bibliographical note

This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Keywords

  • Arts-based knowledge translation
  • Asthma
  • Children
  • Family-centered
  • Intervention development
  • Knowledge translation
  • Parents
  • Storytelling

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