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Journal of Family Nursing
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Children in Research: The Experiences of Siblings in Research Is a Family Affair

Julia A. Snethen, Ph.D., R.N.

University of Wisconsin-Milwaukee

Marion E. Broome, Ph.D., R.N., F.A.A.N.

University of Alabama at Birmingham, broomem{at}son.uab.edu

The specific aims of this study were to (a) ascertain siblings’ ethical concerns, process, and meaning of their brother’s or sister’s involvement in clinical research; (b) describe siblings’ understanding of the research in which their brother/sister was involved; (c) explore siblings’ perception of sociocultural influences on their brother’s/sister’s willingness to participate in research; and (d) describe how siblings are affected by their brother’s/sister’s research trial. Nineteen siblings (ages 9 to 21) whose brother or sister had been enrolled in a clinical research trial within the past 6 months were interviewed, and the data were analyzed qualitatively. A sibling’s understanding of the clinical research trial was distinctly different depending on his or her developmental age and the illness of the brother/sister. These differences included the invasiveness of procedures, seriousness of condition, and the need for siblings to actually participate in the clinical research treatment.

Journal of Family Nursing, Vol. 7, No. 1, 92-110 (2001)
DOI: 10.1177/107484070100700106
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