What aspects of outcome measurement instruments are important to parents and caregivers in child health trials: Survey protocol [version 1; peer review: 1 approved]

Duffy, Moira; Looney, Eibhlin; Dutch, Dimity; Johnson, Brittany; Kelly, Laoise; Porter, Lucy; Redsell, Sarah; Matvienko-Sikar, Karen

Abstract

Background

Trials of interventions to prevent illness and/or improve health outcomes in children play a crucial role in the advancement of paediatric healthcare, research, and policy. It is important for researchers and trialists involved in such trials to understand factors which are important to parents/caregivers when deciding to participate and provide data about their child. There is little evidence to date surrounding the impact of outcome measurement instruments (OMIs) on parents/caregivers’ decisions about participation and provision of data in trials. The aim of this project is to examine what characteristics of OMIs are important in parents/caregivers’ decisions to engage with and participate in trials of interventions to prevent childhood illness and/or improve child health outcomes.

Methods

An online cross-sectional survey is being conducted. Survey recruitment began July 2024 and will be completed in October 2024. Parents/caregivers are eligible to participate if they have at least one child up to 12 years of age; there are no restrictions based on factors such as gender or nationality. Survey participants are being recruited using convenience sampling via social media, parenting websites, and online forums. This survey includes questions about parents/caregivers’ preferences for how, when, where, and with whom data is collected in child health research, as well as the types of OMIs parents/caregivers would be most comfortable using. Data will be analysed using descriptive statistics.

Conclusions

Findings from this study will address the current gap in knowledge related to preferences of parents/caregivers in how data are collected in trials of interventions to improve health outcomes in children. Study findings will inform trialists in the design and conduct of child health research in the future. Implementation of study findings in future trials can also improve experiences of children and their caregivers engaged in research and enhance the quality and quantity of data being collected.

Citation

Duffy, M., Looney, E., Dutch, D., Johnson, B., Kelly, L., Porter, L., Redsell, S., & Matvienko-Sikar, K. (2024). What aspects of outcome measurement instruments are important to parents and caregivers in child health trials: Survey protocol [version 1; peer review: 1 approved]. HRB Open Research, 7, Article 62. https://doi.org/10.12688/hrbopenres.13977.1

• Journal Article Type: Article
• Acceptance Date: Nov 7, 2024
• Online Publication Date: Nov 7, 2024
• Publication Date: Nov 7, 2024
• Deposit Date: Oct 7, 2024
• Publicly Available Date: Oct 7, 2024
• Journal: HRB Open Research
• Print ISSN: 2515-4826
• Electronic ISSN: 2515-4826
• Publisher: F1000Research
• Peer Reviewed: Peer Reviewed
• Volume: 7
• Article Number: 62
• DOI: https://doi.org/10.12688/hrbopenres.13977.1
• Public URL: https://nottingham-repository.worktribe.com/output/40549089
• Publisher URL: https://hrbopenresearch.org/articles/7-62/v1
• Additional Information: Referee status: Awaiting Peer Review; Grant Information: Health Research Board [HRB EIA-2022-005].; ; This research work was also supported by a Health Research Board Trial Methodology Summer Student Scholarship and a Health Research Board Emerging Investigator Award (HRB EIA-2022-005). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.; Copyright: This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.