RESUMO
Increased patient advocacy has resulted in a shift toward more active patient engagement in the research. A scoping review was conducted to explore the literature on healthcare research priority settings wherein children, youths, or their families were involved in the priority-setting process. Six databases including MEDLINE, CINAHL, PsycINFO, Embase, Web of Science, and Global Health and the James Lind Alliance website were searched up until September 2019. All primary studies involving children (<18 years of age) or families in developing research priorities in health care were included. All retrieved references were uploaded into Covidence, and two independent reviewers screened the search results. Descriptive thematic analysis was used to identify common themes. A total of 30 studies with 4247 participants were included. Less than half of the participants (n = 1237, (33%) were pediatric patients and their families. A total of 455 research priorities were identified. Three common themes emerged: (i) quality of care delivery, (ii) self-efficacy in health behaviors, and (iii) community engagement in care. This scoping review revealed priority research health topics from the perspectives of children, youths, or their families. The findings may be used as a foundation for future research to improve the health outcomes of children, youths, or their families according to their identified priorities.
RESUMO
BACKGROUND: Untreated pain in infants is associated with adverse health outcomes. Despite strong evidence for accessible, effective, and low-cost parent-led pain-relieving interventions such as breastfeeding or chestfeeding and skin-to-skin contact, these interventions are not routinely used. OBJECTIVE: The objective of this study is to support the implementation of parent-led pain interventions by identifying barriers to and facilitators of parent-led, evidence-informed pain care in infants during acute procedures. In addition, this study aims to develop theory-informed, contextually relevant implementation interventions for supporting the use of parent-led pain care for infants in hospital and community contexts. METHODS: This study will consist of 2 phases that follow a systematic, theoretically informed approach guided by the Theoretical Domains Framework and Behavior Change Wheel. In phase 1, we will use a qualitative descriptive design to explore barriers and facilitators to using parent-led pain care in infants from the perspectives of hospital and community-based clinicians, clinical leaders, and families. In phase 2, we will use the Behavior Change Wheel to design tailored implementation interventions that have evidence for effectively addressing identified barriers in collaboration with an advisory committee of administrative, clinical, and family leaders. RESULTS: Ethics approval for this study was obtained in December 2020. As of May 2022, a total of 15 participants have been enrolled in phase 1. The results from all phases will be reported in 2023. CONCLUSIONS: Following the completion of this study, we will have co-designed theoretically informed implementation interventions that can be pilot-tested and experimentally applied. The findings will be used to implement parent-led interventions that improve patient safety and health outcomes for diverse families. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/33770.