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The influence of relationships on children's and adolescents' participation in research

Publication ,  Journal Article
Broome, ME; Richards, DJ
Published in: Nurs Res
2003

BACKGROUND: Since the 1950s, children and adolescents have been defined as a vulnerable group for research participation. In 1998, federal mandates were issued to include children in clinical research. OBJECTIVES: The purpose of this qualitative study was to describe children and adolescents' understanding of research and the sociocultural factors that influenced them to become involved and continue participation in clinical research. The specific objective of the study findings reported here was to describe how relationships with adults (e.g., parents and investigators) influenced children and adolescent involvement in clinical research. METHOD: This study employed qualitative methods, using semistructured interviews and narrative analytic techniques. There were 34 children and adolescent participants, (8-22 years of age) who had a diagnosis of either diabetes or a hematological malignancy. Participants were interviewed to obtain an understanding of their experience with the assent/consent process for a research study. All interviews were transcribed verbatim from the audiotapes. RESULTS: Three themes discussed in this article were related to the child/adolescent's relationships with powerful adults: (a) faith in their parent(s), (b) relationships with members of the research/medical team, and (c) the child's perception of what happens when a child/adolescent and his/her parent disagree about research participation. DISCUSSION: Chronically ill children are willing to dialog about their involvement in research trials, and describe how relationships with their parents and clinician/investigators influence them. They can articulate their ability and right to make the decisions about involvement in research, along with their parent(s).

Duke Scholars

Published In

Nurs Res

ISSN

0029-6562

Publication Date

2003

Volume

52

Start / End Page

191 / 197

Related Subject Headings

  • Trust
  • Surveys and Questionnaires
  • Research Personnel
  • Qualitative Research
  • Psychology, Child
  • Psychology, Adolescent
  • Professional-Patient Relations
  • Patient Selection
  • Patient Acceptance of Health Care
  • Parent-Child Relations
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Broome, M. E., & Richards, D. J. (2003). The influence of relationships on children's and adolescents' participation in research. Nurs Res, 52, 191–197.
Broome, M. E., and D. J. Richards. “The influence of relationships on children's and adolescents' participation in research.” Nurs Res 52 (2003): 191–97.
Broome, M. E., and D. J. Richards. “The influence of relationships on children's and adolescents' participation in research.” Nurs Res, vol. 52, 2003, pp. 191–97.

Published In

Nurs Res

ISSN

0029-6562

Publication Date

2003

Volume

52

Start / End Page

191 / 197

Related Subject Headings

  • Trust
  • Surveys and Questionnaires
  • Research Personnel
  • Qualitative Research
  • Psychology, Child
  • Psychology, Adolescent
  • Professional-Patient Relations
  • Patient Selection
  • Patient Acceptance of Health Care
  • Parent-Child Relations