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,...
Autores principales: | , , |
---|---|
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 |