Cargando…

How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR

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,...

Descripción completa

Detalles Bibliográficos
Autores principales: Van De Maele, Karolien, Devlieger, Roland, Gies, Inge
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040477/
https://www.ncbi.nlm.nih.gov/pubmed/32133332
http://dx.doi.org/10.3389/fped.2020.00047
_version_ 1783500997182619648
author Van De Maele, Karolien
Devlieger, Roland
Gies, Inge
author_facet Van De Maele, Karolien
Devlieger, Roland
Gies, Inge
author_sort Van De Maele, Karolien
collection PubMed
description 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.
format Online
Article
Text
id pubmed-7040477
institution National Center for Biotechnology Information
language English
publishDate 2020
publisher Frontiers Media S.A.
record_format MEDLINE/PubMed
spelling pubmed-70404772020-03-04 How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR Van De Maele, Karolien Devlieger, Roland Gies, Inge Front Pediatr Pediatrics 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. Frontiers Media S.A. 2020-02-14 /pmc/articles/PMC7040477/ /pubmed/32133332 http://dx.doi.org/10.3389/fped.2020.00047 Text en Copyright © 2020 Van De Maele, Devlieger and Gies. http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Van De Maele, Karolien
Devlieger, Roland
Gies, Inge
How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR
title How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR
title_full How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR
title_fullStr How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR
title_full_unstemmed How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR
title_short How to Maximize Children's Involvement in Non-therapeutic Research—Lessons Learnt From EFFECTOR
title_sort how to maximize children's involvement in non-therapeutic research—lessons learnt from effector
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040477/
https://www.ncbi.nlm.nih.gov/pubmed/32133332
http://dx.doi.org/10.3389/fped.2020.00047
work_keys_str_mv AT vandemaelekarolien howtomaximizechildrensinvolvementinnontherapeuticresearchlessonslearntfromeffector
AT devliegerroland howtomaximizechildrensinvolvementinnontherapeuticresearchlessonslearntfromeffector
AT giesinge howtomaximizechildrensinvolvementinnontherapeuticresearchlessonslearntfromeffector