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

BMC medical informatics and decision making, 2022-07, Vol.22 (1), p.197-197, Article 197 [Peer Reviewed Journal]

2022. The Author(s). ;COPYRIGHT 2022 BioMed Central Ltd. ;2022. This work is licensed under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. ;The Author(s) 2022 ;ISSN: 1472-6947 ;EISSN: 1472-6947 ;DOI: 10.1186/s12911-022-01911-9 ;PMID: 35879768

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  • Title:
    Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy
  • Author: Yan, Haoyang ; Kukora, Stephanie K ; Pituch, Kenneth ; Deldin, Patricia J ; Arslanian-Engoren, Cynthia ; Zikmund-Fisher, Brian J
  • Subjects: Child ; Children & youth ; Communication ; Data analysis ; Decision Making ; Design ; Errors ; Evaluation ; Families & family life ; Feedback ; Forecasting ; Health aspects ; Health informatics ; Humans ; Information processing ; Interviews ; Narratives ; Ostomy ; Parents ; Parents & parenting ; Patient education as topic ; Patient outcomes ; Pediatric research ; Pediatric tracheostomy ; Pediatrics ; Product development ; Qualitative research ; Quality of Life ; Tracheostomy ; Tracheotomy ; User-Centered Design ; Ventilators
  • Is Part Of: BMC medical informatics and decision making, 2022-07, Vol.22 (1), p.197-197, Article 197
  • Description: 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. 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. 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. 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).
  • Publisher: England: BioMed Central Ltd
  • Language: English
  • Identifier: ISSN: 1472-6947
    EISSN: 1472-6947
    DOI: 10.1186/s12911-022-01911-9
    PMID: 35879768
  • Source: Springer
    Geneva Foundation Free Medical Journals at publisher websites
    MEDLINE
    PubMed Central
    ROAD: Directory of Open Access Scholarly Resources
    ProQuest Central
    DOAJ Directory of Open Access Journals
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