TY - JOUR
T1 - Motivations of children and their parents to participate in drug research
T2 - a systematic review
AU - Tromp, Krista
AU - Zwaan, C. Michel
AU - van de Vathorst, Suzanne
N1 - Publisher Copyright:
© 2016, The Author(s).
PY - 2016/5/1
Y1 - 2016/5/1
N2 - Information on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a “guinea pig” and fear of risks were most mentioned as discouraging factors by children. Conclusion: Paying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent.What is known:• This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research.• The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary.What is new:• This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents.
AB - Information on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a “guinea pig” and fear of risks were most mentioned as discouraging factors by children. Conclusion: Paying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent.What is known:• This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research.• The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary.What is new:• This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents.
KW - Child
KW - Clinical drug research
KW - Ethics
KW - Motivations
KW - Parents
KW - Participation
UR - http://www.scopus.com/inward/record.url?scp=84962197388&partnerID=8YFLogxK
U2 - 10.1007/s00431-016-2715-9
DO - 10.1007/s00431-016-2715-9
M3 - Review article
C2 - 27041121
AN - SCOPUS:84962197388
SN - 0340-6199
VL - 175
SP - 599
EP - 612
JO - European Journal of Pediatrics
JF - European Journal of Pediatrics
IS - 5
ER -