Table 3.
Adoption process component | Study-specific issue | Lessons learned |
---|---|---|
Knowledge | ||
Awareness | Families not aware why they were referred Families not aware of child's diagnosis or difficulty Families not wanting to identify child as a “problem” Many children without previous diagnosis |
Don't require previous diagnosis, use “behaviors consistent with ____” Provide diagnostic and/or behavioral information only if requested |
Persuasion | ||
Complexity | Financial strain and resulting pressures make participation in research and interventions
difficult Difficulty engaging in parent training sessions Difficulty understanding study forms/language barriers |
Flexible schedule (including Saturdays and Sundays, early morning and late evening) Flexible training modalities, charla model More frequent contact via text and phone Study staff available to go through the forms with families |
Relative Advantage | Many had tried to seek care but end up receiving information through less expert staff who happen to speak Spanish Parents wanted to form relationships with study staff before trusting their “expertise” |
Bilingual staff connected families with services, which resulted in families being more willing to engage in study interventions Study staff respected the importance of personalismo |
Compatibility | Families needed consent from all important family members before signing consent forms Mental health/neurodevelopmental issues often stigmatized Community building takes time Issues of trust in consent process Families hesitant to include child's data in a database |
Schedule multiple sessions with families Allow extra time for consent process Appropriate self-disclosure by family navigator to address stigma Plan to slowly build up recruitment over time Use trusted messengers Don't require video taping Show families what databases look like and explain the de-identification process |
Observability | Many families thought they had never met anyone who had a child with ASD or ADHD | Use of family navigator's self-disclosure Use of parent videos in trainings Parent sharing opportunities Word of mouth |