title: Motivations of children and their parents to participate in drug research: a systematic review.
abstract: 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.
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  • 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.
authors.affiliation: Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, P.O. box 2040, 3000, CA, Rotterdam, The Netherlands. K.tromp@erasmusmc.nl.
authors.forename: Krista
authors.initials: K
authors.lastname: Tromp
authors.affiliation: Department of Pediatric Oncology/Hematology, Erasmus MC-Sophia Children's Hospital, P.O. box 2040, 3000, CA, Rotterdam, The Netherlands.
authors.forename: C Michel
authors.initials: CM
authors.lastname: Zwaan
authors.affiliation: Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, P.O. box 2040, 3000, CA, Rotterdam, The Netherlands.
authors.forename: Suzanne
authors.initials: S
authors.lastname: van de Vathorst
mesh_terms: D002648:Child; D003657:Decision Making; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D009042:Motivation; D033282:Parental Consent / Q000523:psychology*; D000071220:Pharmaceutical Research; D035842:Research Subjects / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Child; Clinical drug research; Ethics; Motivations; Parents; Participation