title: Why do parents enroll their children in research: a narrative synthesis.
abstract: OBJECTIVE
  Recent legislation mandating the inclusion of children in clinical trials has resulted in an increase in the number of children participating in research. We reviewed the literature regarding the reasons parents chose to accept or decline an invitation to enroll their children in clinical research.
  
  
  METHODS
  We searched for qualitative studies, written in the English language that considered the experiences of parents who had been invited to enrol their children in research. SCOPUS and Web of Knowledge electronic databases and reference lists of retrieved articles and review papers were searched. Retrieved articles were synthesised using the narrative synthesis method.
  
  
  RESULTS
  16 qualitative studies exploring the experiences of parents living in five countries whose children had a range of health conditions of varying severity were included. The health status of the child appeared to influence parents' reasons for participation. Parents whose children had life threatening conditions often considered they had no choice but to participate and many welcomed the innovation offered through research participation. Such parents also viewed the risks of research less negatively than those whose children were healthy or in the stable stage of a chronic condition. This raises questions regarding the voluntariness of informed consent by such parents.
  
  
  CONCLUSIONS
  A tailored approach is needed when discussing research participation with parents of eligible children. While parents of healthy children may be more open to discussions of altruism, those whose children have life threatening illnesses should be given adequate information about the alternatives to, and risks of, research participation.
authors.affiliation: King’s College London, MRC & Asthma U.K. Centre in Allergic Mechanisms of Asthma, Division of Asthma, Allergy and Lung Biology, Guy’s and St. Thomas’ NHS Foundation Trust, London, UK. helen.r.fisher@kcl.ac.uk
authors.forename: Helen R
authors.initials: HR
authors.lastname: Fisher
authors.forename: Christopher
authors.initials: C
authors.lastname: McKevitt
authors.forename: Annette
authors.initials: A
authors.lastname: Boaz
mesh_terms: D000293:Adolescent; D000533:Altruism; D001294:Attitude to Health; D035843:Biomedical Research / Q000941:ethics*; D002648:Child; D064420:Drug-Related Side Effects and Adverse Reactions; D005069:Evaluation Studies as Topic; D017048:Health Care Costs / Q000941:ethics; D006304:Health Status; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000523:psychology*; D033262:Narration; D010290:Parents / Q000523:psychology; D010358:Patient Participation / Q000523:psychology / Q000706:statistics & numerical data; D002666:Psychology, Child / Q000941:ethics; D036301:Qualitative Research; D013534:Survival / Q000523:psychology