Extract:Expectations and attitudes of parents of 140 children awaiting admission to a pediatric research center were examined in semistructured preadmission interviews. Parental conceptions of the purpose of hospitalization are summarized in table I. Even after discussion with the physician-investigator, parents of 61 children (Group A) failed to comprehend that hospitalization was for some research purpose. Although the expectations of parents and physicians could not be uniformly compared, it was established that, in many instances, purposes of the research had been explicitly described and that parents had utilized denial and repression in blocking these anxiety-producing communications. Parents of 60 children (Group B) viewed hospitalization as combining therapeutic and research aims. Parents of 9 (Group C) viewed the aim as primarily research. Parents of 6 (Group D) viewed the aim as pure research. Views of parents of 4 were unclassified. A broad spectrum of fears associated with the concept 'research' was expressed by parents in Groups, B, C, and D. Children were viewed to be endangered by their disorders, and no alternative source of medical care was considered available. The idea of declining hospitalization seemed to be guilt-laden, and most of these parents thought consent was their only choice. It was concluded from this study that if informed parental consent is sought, there are four questions on which the parents and physicians should concentrate: In what ways do the proposed studies constitute research as distinct from diagnosis and treatment? What is the nature of these studies? What physical and psychological risks are involved? Could alternate methods be developed to meet the child’s medical needs? Speculation:Systematic comparison of the motivations and expectations of physicians and parents both prior and subsequent to hospitalization of children for research purposes is proposed. Such a study should clarify the delineations between research and medical care and should elucidate some of the sources of parental misconceptions. In addition, a systematic study of the adaptation of children and their subsequent recovery from the stress experiences associated with research procedures is intended. Such a study should yield guidelines for appraising psychological risk with parents prior to eliciting consent and would also stimulate the development of special nursing techniques to safeguard and perhaps enhance the psychological well-being of the patients. © International Pediatrics Research Foundation, Inc. 1969. All Rights Reserved.
