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Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study
  1. Michele P Dyson1,
  2. Kassi Shave1,
  3. Allison Gates1,
  4. Ricardo M Fernandes2,
  5. Shannon D Scott3,
  6. Lisa Hartling1
  1. 1 Alberta Research Centre for Health Evidence and the Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
  2. 2 Department of Pediatrics, Hospital de Santa Maria, Lisbon, Portugal
  3. 3 Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
  1. Correspondence to Dr Michele P Dyson; mdyson{at}ualberta.ca

Abstract

Objectives To identify the outcome priorities of parents of children who had experienced an acute respiratory infection (ARI).

Design This was a two-phase, mixed methods study with a sequential exploratory design. We used a cross-sectional quantitative web-based survey to elicit parents’ priorities for paediatric ARI. We then used a discussion moderated via Facebook to elucidate richer descriptions of parents’ priorities.

Setting Survey and discussion data were collected via the internet.

Participants 110 parents (90% women, median age 35 years, 92.7% urban dwelling, 94.5% with a postsecondary education) with a child who had experienced an ARI responded to the survey. Four parents participated in the Facebook discussion.

Primary and secondary outcome measures The primary outcome was parents’ rankings of outcomes related to paediatric ARI. The secondary outcomes were the alignment of parent-reported important outcomes with those commonly reported in Cochrane systematic reviews (SRs).

Results Commonly reported ARIs included croup (44.5%), wheezing (43.6%) and influenza (38.2%). Parents ranked major complications, illness symptoms and length of stay as the most important outcome categories. With respect to specific outcomes, severe complications, major side effects, doctor’s assessment, relapse, oxygen supplementation and results from laboratory measures were reported as most important (75th–99th percentile). Taking time off work, mild complications, interference with daily activities, treatment costs, absenteeism, follow-up visits and other costs were deemed minimally important (<25th percentile). In 35 Cochrane SRs, 29 unique outcomes were reported. Although participants’ priorities sometimes aligned with outcomes frequently reported in the literature, this was not always true. Additional priorities from the survey (n=50) and Facebook discussions (n=4) included healthcare access, interacting with healthcare providers, education, impact on daily activities and child well-being.

Conclusions In the context of paediatric ARI, parents’ priorities did not always align with commonly researched outcomes. Appealing and efficient strategies to engage patients and parents in research should be developed.

  • community child health
  • respiratory medicine (see thoracic medicine)
  • paediatric thoracic medicine
  • respiratory infections

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors MPD and LH designed the study. MPD oversaw all aspects of the study’s implementation. MPD and KS collected, analysed and interpreted the data with input from AG, LH, RMF and SDS. All authors had full access to the data, and can take responsibility for the integrity of the data and the accuracy of the data analysis. KS and AG drafted the manuscript. MPD, LH, RMF and SDS reviewed the manuscript critically for intellectual content. All authors approved the version of the manuscript that was submitted to the journal.

  • Funding This work was supported by KT Canada, grant number CIHR 87776 (SG-1) and Alberta Innovates Health Solutions, grant number 201400561. LH is supported in part by a Canadian Institutes of Health Research New Investigator Award. SDS is a Canada Research Chair (Tier II) for Knowledge Translation in Child Health and is also supported by an Alberta Innovates Health Solutions Population Health Investigator Award.

  • Disclaimer The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.

  • Competing interests None declared.

  • Ethics approval University of Alberta Research Ethics Board (number Pro00058629).

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

  • Data sharing statement Anonymised data are available from the corresponding author upon reasonable request.

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