Assent Procedures with Young Children with Disabilities or at Developmental Risk in Participatory Research: A Scoping Review

Ethical guidelines highlight the importance of children’s own assent to research participation, especially within participatory approaches. Nevertheless, there is no consensus on best practice for assent procedures with young children under seven with disabilities or at developmental risks. This scoping review examines how assent procedures with this group have been conducted within participatory research projects. Nine articles met the inclusion criteria and were analysed narratively and with qualitative content analysis. The findings offer an overview of existing approaches and reveal wide variations in conceptualization, scope, and methods concerning the provision of information, assessment of understanding, obtaining assent, caregiver involvement and dealing with children’s dissent. The significant heterogeneity may be due to researcher’s varying concepts of assent. Reporting on assent procedures was frequently incomplete or superficial. Clearer practice guidelines and more transparent reporting guidelines are recommended to ensure ethically rigorous and developmentally appropriate assent procedures with this target group.