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

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]