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


OBJECTIVE
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.


METHODS
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.


CONCLUSIONS
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).
Broome
Marion E
ME
University of Alabama School of Nursing, Birmingham, 35294, USA. brommem@son.uab.edu
Richards
Deborah J
DJ
D000208:Acute Disease; D000293:Adolescent; D000328:Adult; D002648:Child; D002908:Chronic Disease / Q000523:psychology; D002986:Clinical Trials as Topic / Q000523:psychology*; D003657:Decision Making; D003922:Diabetes Mellitus, Type 1 / Q000523:psychology; D006402:Hematologic Diseases / Q000523:psychology; D006801:Humans; D007258:Informed Consent; D009369:Neoplasms / Q000523:psychology; D015404:Nursing Methodology Research; D010287:Parent-Child Relations; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D018579:Patient Selection; D011369:Professional-Patient Relations; D000297:Psychology, Adolescent; D002666:Psychology, Child; D036301:Qualitative Research; D012108:Research Personnel / Q000523:psychology*; D011795:Surveys and Questionnaires; D035502:Trust