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Table 4 Benefits and challenges of patient and family engagement in pediatric research

From: Engaging children and families in pediatric Health Research: a scoping review

  Benefits Challenges
Research • Creates sense of genuine value and purpose [14, 15, 17, 21, 22, 28]
• Influenced and enhanced trial design [16, 20, 22, 25, 26, 30]
• More relevant findings [17, 18, 20, 24, 26]
• Increased recruitment and retention rates [20, 21]
• Enhanced public exposure broadened dissemination and social relevancy [19, 24, 25, 28]
• Increased accuracy and/or utilization of results [24, 25]
• Families “revitalized” and “motivated” the researchers [22, 26]
• High investment of time and money [15, 16, 28, 29]
• Recruitment of individuals for PE [15, 16, 27]
• Sustaining engagement [23, 29]
• Achieving representative and diverse engaged population [15, 18]
• Merging and representing contrary and varying experiences from parents [18, 23, 28, 30]
Engaged population • Felt empowered and/or able to “give back” [21, 24, 26, 28, 29]
• Increased motivation, awareness, and confidence [14, 22, 28, 29]
• Gained new knowledge and skills [22, 28, 29]
• Form of therapy for bereaved families [23]
• Equalizing power imbalance between researcher and patient [15, 18, 24, 26]
• Navigating logistics (sick children, family schedules, geographical distances) [23, 24, 26,27,28]
• Lack of knowledge (medical jargon, research process) [14, 21, 23, 24, 26]
• Establishing relationships and trust [24, 26]
• Involving and/or maintaining children and family in higher levels of PE [25, 29]