The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer.
Pediatr Blood Cancer
; 48(4): 441-6, 2007 Apr.
Article
en En
| MEDLINE
| ID: mdl-16425279
ABSTRACT
PURPOSE:
The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results.METHODS:
Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a tertiary care oncology setting.RESULTS:
The content validity index for individual questions and the overall questionnaires scored as 0.86 for both questionnaires. All 30 parents and 10 adolescents who agreed to participate returned questionnaires. The majority (>95%) indicated that they had a strong or very strong right to receive results. Letter or e-mail was a satisfactory means to return results described as good or neutral (66% parents, 100% adolescents) but more participants wished face-to-face disclosure of results with negative implications (50% parents, 60% adolescents). Very few wanted results disseminated through a Web site. The majority acknowledged the need for peer-review before disclosure (60% of adolescents and parents) but did not want "to be the last to know."CONCLUSIONS:
Our data suggest that pediatric oncology patients and parents of children with cancer strongly feel that they have a right to research results, and that they wish to receive these in a timely manner.
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Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Revelación de la Verdad
/
Derechos del Paciente
/
Acceso de los Pacientes a los Registros
/
Sujetos de Investigación
Tipo de estudio:
Etiology_studies
/
Qualitative_research
Aspecto:
Ethics
Límite:
Adolescent
/
Adult
/
Child
/
Humans
Idioma:
En
Revista:
Pediatr Blood Cancer
Asunto de la revista:
HEMATOLOGIA
/
NEOPLASIAS
/
PEDIATRIA
Año:
2007
Tipo del documento:
Article
País de afiliación:
Canadá
Pais de publicación:
EEUU
/
ESTADOS UNIDOS
/
ESTADOS UNIDOS DA AMERICA
/
EUA
/
UNITED STATES
/
UNITED STATES OF AMERICA
/
US
/
USA