At start up, it is difficult to guarantee a diverse and representative sample of young persons in your YPAG. However, groundwork can be established from initiation to move towards a group of sufficient diversity and representativeness.
Decisions on participants should consider the age, sex, socioeconomic status, heath status, prior participation in public involvement groups, and ethnicity of potential recruits. Recruiting very young children may not be appropriate in a YPAG as teaching of complex concepts around clinical trials, and the expression of opinions and advices to adults may be challenging for very young children. Research indicates that children aged between 6 and 10 had difficulty comprehending abstract features of research (e.g., risks) . Social and language skills of children younger than 6 years of age may be insufficient to be effective in advisory groups. Adolescents, who are 14 or 15 years of age or older, have been found to be similar to adults on measures of research comprehension . Mixed findings exist regarding successful comprehension of certain aspects of research by children aged 11 years and older .
Areas of recruitment include schools, community outreach programs, clinics, and libraries. Schools may be the ideal location to recruit members for the YPAG, however, it should be emphasized that candidates should not only be individuals of academic excellence. Networking with school administrators, counsellors, and teachers will ensure that a large number of youths become aware of the YPAG development plan. They may facilitate the provision of detailed information about the YPAG to students-of-interest and help identify candidates. Doctors at local clinics may also provide candidates of varying health statuses who may also have personal experience with clinical research. Community outreach programs have also been used to recruit participants of different socioeconomic statuses.
The application process should ensure that potential recruits are thoroughly assessed. Strong communication skills will be needed to effectively transmit opinions and ideas to members of a clinical research. A candidate’s interest in participation should be reviewed to ensure that they understand the work to be done and maintain committed to attending regular meetings. Requiring applications to include references in the areas of communication and teamwork may ensure that those with the desired skills are recruited. A nomination system may be employed, whereby prospective youths are nominated by those who have worked with the individual (e.g. teachers or clinicians) may be used, as nominators can vouch for their leadership, teamwork, and communication skills, and may be able to recruit shy individuals who may be hesitant about submitting their own application. Additional strategies that may be used to assess kids’ further may include interviews.
Although literature recommends youth advisory groups that range from 4 to 8 members , some existing YPAGs operate with as much as 20 individuals. A large group would ensure that an effective meeting can be held even if some members are unable to attend the session. Effective delivery and strong understanding of lessons can occur in a small group size, however. The Steering Committee should decide on the size of the YPAG while taking into consideration its resources.
The recruitment process should occur in batches to ensure that teaching is completed efficiently and that members become familiar with one another at similar times. Upon recruitment, an information session with the parents should be held to clearly inform parents of the purpose of the group and activities that will be carried out, as well as to provide formal parental consent for participation. Potential forms to be signed include consent for participation, permission to have pictures taken during meetings and posted for group promotional purposes, approval to attend conferences/workshops, reporting of any allergies or health issues, and emergency contact information. Permission to travel, should opportunities arise, should be granted each time an event occurs.
Note that it is the decision of organizers to determine whether or not incentives should be provided for participation. Opportunity for the members to expense transportation costs and to be provided food during meetings should be offered. Members should be informed that participation in the YPAG will not go towards school credits, unless otherwise arranged. However, explicit details should be provided regarding the benefits associated with participating as an active member of the YPAG, including but not limited to:
- Learn about health disease and research
- Develop skills in group work and expression of opinion
- Increased and impactful interactions with professional researchers/trialists
- Develop leadership skills as officers or committee chairpersons of the organization
- Improve pediatric research and innovation which can in turn help to improve children’s health
- Gain opportunities to attend scientific conferences and advocate for PPI in pediatric research