Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool
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...
Main Authors: | , , , , |
---|---|
Format: | Article |
Language: | English |
Published: |
BMC
2018-06-01
|
Series: | BMC Pediatrics |
Subjects: | |
Online Access: | http://link.springer.com/article/10.1186/s12887-018-1155-2 |
id |
doaj-9303244556c6435a8cb0082a17549a6a |
---|---|
record_format |
Article |
spelling |
doaj-9303244556c6435a8cb0082a17549a6a2020-11-24T20:40:21ZengBMCBMC Pediatrics1471-24312018-06-0118111010.1186/s12887-018-1155-2Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation toolMandy M. Archibald0Lisa Hartling1Samina Ali2Vera Caine3Shannon D. Scott4College of Nursing and Health Sciences, Flinders UniversityDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton Clinic Health AcademyDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton Clinic Health AcademyFaculty of Nursing, University of Alberta, Level 3, Edmonton Clinic Health AcademyFaculty of Nursing, University of Alberta, Level 3, Edmonton Clinic Health AcademyAbstract 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.http://link.springer.com/article/10.1186/s12887-018-1155-2AsthmaKnowledge translationParentsChildrenFamily-centeredArts-based knowledge translation |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Mandy M. Archibald Lisa Hartling Samina Ali Vera Caine Shannon D. Scott |
spellingShingle |
Mandy M. Archibald Lisa Hartling Samina Ali Vera Caine Shannon D. Scott Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool BMC Pediatrics Asthma Knowledge translation Parents Children Family-centered Arts-based knowledge translation |
author_facet |
Mandy M. Archibald Lisa Hartling Samina Ali Vera Caine Shannon D. Scott |
author_sort |
Mandy M. Archibald |
title |
Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool |
title_short |
Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool |
title_full |
Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool |
title_fullStr |
Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool |
title_full_unstemmed |
Developing “My Asthma Diary”: a process exemplar of a patient-driven arts-based knowledge translation tool |
title_sort |
developing “my asthma diary”: a process exemplar of a patient-driven arts-based knowledge translation tool |
publisher |
BMC |
series |
BMC Pediatrics |
issn |
1471-2431 |
publishDate |
2018-06-01 |
description |
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. |
topic |
Asthma Knowledge translation Parents Children Family-centered Arts-based knowledge translation |
url |
http://link.springer.com/article/10.1186/s12887-018-1155-2 |
work_keys_str_mv |
AT mandymarchibald developingmyasthmadiaryaprocessexemplarofapatientdrivenartsbasedknowledgetranslationtool AT lisahartling developingmyasthmadiaryaprocessexemplarofapatientdrivenartsbasedknowledgetranslationtool AT saminaali developingmyasthmadiaryaprocessexemplarofapatientdrivenartsbasedknowledgetranslationtool AT veracaine developingmyasthmadiaryaprocessexemplarofapatientdrivenartsbasedknowledgetranslationtool AT shannondscott developingmyasthmadiaryaprocessexemplarofapatientdrivenartsbasedknowledgetranslationtool |
_version_ |
1716827213509165056 |