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Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy

BACKGROUND: Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a de...

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Autores principales: Yan, Haoyang, Kukora, Stephanie K., Pituch, Kenneth, Deldin, Patricia J., Arslanian-Engoren, Cynthia, Zikmund-Fisher, Brian J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9316812/
https://www.ncbi.nlm.nih.gov/pubmed/35879768
http://dx.doi.org/10.1186/s12911-022-01911-9
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author Yan, Haoyang
Kukora, Stephanie K.
Pituch, Kenneth
Deldin, Patricia J.
Arslanian-Engoren, Cynthia
Zikmund-Fisher, Brian J.
author_facet Yan, Haoyang
Kukora, Stephanie K.
Pituch, Kenneth
Deldin, Patricia J.
Arslanian-Engoren, Cynthia
Zikmund-Fisher, Brian J.
author_sort Yan, Haoyang
collection PubMed
description BACKGROUND: Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision. METHODS: To ensure that the intervention reflects parents’ needs (rather than experts’ opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (n = 10) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (n = 9 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet. RESULTS: Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child’s quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone. CONCLUSIONS: A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids). SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-022-01911-9.
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spelling pubmed-93168122022-07-27 Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy Yan, Haoyang Kukora, Stephanie K. Pituch, Kenneth Deldin, Patricia J. Arslanian-Engoren, Cynthia Zikmund-Fisher, Brian J. BMC Med Inform Decis Mak Research BACKGROUND: Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision. METHODS: To ensure that the intervention reflects parents’ needs (rather than experts’ opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (n = 10) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (n = 9 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet. RESULTS: Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child’s quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone. CONCLUSIONS: A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids). SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-022-01911-9. BioMed Central 2022-07-25 /pmc/articles/PMC9316812/ /pubmed/35879768 http://dx.doi.org/10.1186/s12911-022-01911-9 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Yan, Haoyang
Kukora, Stephanie K.
Pituch, Kenneth
Deldin, Patricia J.
Arslanian-Engoren, Cynthia
Zikmund-Fisher, Brian J.
Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
title Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
title_full Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
title_fullStr Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
title_full_unstemmed Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
title_short Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
title_sort adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9316812/
https://www.ncbi.nlm.nih.gov/pubmed/35879768
http://dx.doi.org/10.1186/s12911-022-01911-9
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