Strategies for recruiting the dependent children of patients with a life-limiting illness as research participants

Abstract

Background: The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children (<18 years old) are able to participate in research and appreciate the opportunity to participate in studies. Aim: To share the strategies employed by two research teams from USA and UK, who have successfully recruited children living with parental life-limiting illness as research participants. Findings: The researchers overcame common challenges when negotiating ethics committees by anticipating the IRB/REC concerns, providing the committees with detailed applications including distress protocols, and offering resources to their ethics committee to learn about conducting research with this population. The researchers navigated recruitment and gatekeeping by clinicians and parents by partnering with clinical agencies and nurturing relationships with practitioners who are supportive of the research, offering to present the findings of the study with continuing education credits, and developing children’s, adolescents’ and parents’ project advisory groups to support recruitment, data collection and analysis. Conclusions: Simple strategies can be used to overcome barriers to recruitment, providing opportunities for children to be research participants and for their unique perspectives to be heard in palliative care research.