title: Parents' experiences in decision making with childhood cancer clinical trials.
abstract: Childhood cancer requires families to deal with many stressors, including decision making in terms of their child's treatment. Adding to the stress of families is that most children participate in clinical research trials. Minimal research has been done to explore parents' decisions related to involving their child in childhood cancer clinical trials. Especially missing is a description of Canadian parents' perspectives. This article describes a qualitative study that sought to understand Canadian parents' participation in decisions about childhood cancer clinical trials. Person-centered, individual, open-ended interviews were conducted with 31 parents of children with cancer. The parents ranged in age between 27 and 51 years. Data analyzed by the constant comparative method revealed that parents found their participation in decisions about childhood cancer clinical trials as a difficult and extraordinary experience that included 6 themes: (1) living a surreal event, (2) wanting the best for my child, (3) helping future families of children with cancer, (4) coming to terms with my decision, (5) making one decision among many, and (6) experiencing a sense of trust. This study indicates that parents need more support not only during the initial decision-making period but also throughout the entire time their child is enrolled in a clinical trial.
authors.affiliation: Child Health and Illness, Faculty of Nursing, Helen Glass Centre for Nursing, University of Manitoba, 89 Curry Place, R3T 2N2, Winnipeg, Manitoba, Canada. Roberta_Woodgate@umanitoba.ca
authors.forename: Roberta Lynn
authors.initials: RL
authors.lastname: Woodgate
authors.forename: Rochelle Avis
authors.initials: RA
authors.lastname: Yanofsky
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D035843:Biomedical Research; D002170:Canada; D002648:Child; D002675:Child, Preschool; D002986:Clinical Trials as Topic; D003256:Community Participation; D003258:Consumer Behavior; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D009369:Neoplasms; D010287:Parent-Child Relations; D010290:Parents; D010465:Perception; D011368:Professional-Family Relations; D036301:Qualitative Research; D013315:Stress, Psychological; D055815:Young Adult