Video_1_How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR.MP4
Background: Children are vulnerable study subjects, especially in non-therapeutic research. Nowadays more attention is paid to the children's voice in both decision-making on participation and their experience of clinical research procedures.
Methods: We share our experiences from a long-term, cross-sectional, non-therapeutic follow-up study in the offspring of mothers who participated in scientific research during their pregnancy.
Results: During the data collection process, different strategies were developed to achieve a satisfactory participation rate with a focus on the involvement of the children. All study documents and measurements were assembled into a superhero framework. This theme is flexible and attracts children of a wide age-span. In order to inform the children before the study visit, a visually attractive assent was created as well as a superhero video. During the study visit, a sticker diploma was used with similar visuals from the assent. The toddlers received a superhero-cape. The children were involved in the decision-making process during the whole process.
Discussion and conclusion: From our experience during the EFFECTOR data collection process, parents and their children can be motivated to participate in a long-term, non-therapeutic, follow-up study when child friendly and adequate communication is used. Framing in a superhero theme is simple and suitable for children of a wide age-span.
History
References
- https://doi.org//10.1017/ipm.2017.73
- https://doi.org//10.1097/01.mop.0000145718.77939.b1
- https://doi.org//10.1016/S0140-6736(09)61803-1
- https://doi.org//10.1016/S0140-6736(15)60974-6
- https://doi.org//10.1016/j.clinthera.2017.09.002
- https://doi.org//10.1111/fcp.12360
- https://doi.org//10.1007/s40272-017-0261-1
- https://doi.org//10.1001/archpedi.155.11.1197
- https://doi.org//10.1001/archpediatrics.2007.3
- https://doi.org//10.1016/S0140-6736(04)16942-0
- https://doi.org//10.1016/j.jpeds.2006.04.043
- https://doi.org//10.1016/j.socscimed.2015.08.019
- https://doi.org//10.1016/j.pec.2011.09.006
- https://doi.org//10.1136/bmjpo-2018-000405
- https://doi.org//10.1542/peds.2010-3283
- https://doi.org//10.1186/s12910-017-0199-4
- https://doi.org//10.1136/jme.2004.010579
- https://doi.org//10.3399/bjgp15X684385
- https://doi.org//10.1111/j.2047-6310.2013.00201.x
- https://doi.org//10.1001/jamapediatrics.2013.5483
- https://doi.org//10.1002/chi.739
- https://doi.org//10.1111/j.1753-6405.2012.00854.x