What Motivates Parents of Young Children With Down Syndrome to Participate in Research: A Focus Group Analysis.

BACKGROUND

This cross-national study aimed to investigate and identify the motivations that drive parents of children with Down syndrome (DS) towards or away from participating in research.

METHODS

Participants were 33 parents of children with DS who took part in nine focus groups in the United States and in Italy. Answers to questions regarding motivation for research participation were transcribed and then analyzed using ATLAS.ti.

RESULTS

Six themes emerged regarding parent motivation: (a) Increasing parent knowledge; (b) Interest in a specific research topic; (c) Opportunities to receive support; (d) Logistical accessibility; (e) To support the DS community; and (f) To create a more inclusive society. 'Interest in a specific research topic' and 'Logistical accessibility' emerged as the main motivating factors cross-culturally. Only subtle differences emerged between the two countries.

CONCLUSION

Results of this work can inform the alignment of future DS research with community and stakeholder priorities and values.