title: Qualitative research methodology in the exploration of patients' perceptions of participating in a genetic research program.
abstract: The success of genetic research studies depend on patients' willingness to participate. It is thus important to explore the attitudes of individuals that participate in such studies. This study used qualitative methods to explore how individuals with inherited retinal degenerative disorders (RDD) perceived participating in genetic research and subsequently receiving mutation results. Individual interviews were conducted with all the individuals in the Cape Town Metropolitan area who had received mutation results after participating in a genetic research program (4 individuals). Although experiences differed significantly, the study revealed that the participants had positive attitudes towards participating in the RDD research program. This study illustrates the importance of using qualitative methods in ophthalmic populations to explore important issues.
authors: Division of Human Genetics, University of Cape Town, Cape Town, South Africa.
authors: Frieda
authors: F
authors: Basson
authors: Merle Joyce
authors: MJ
authors: Futter
authors: Jacquie
authors: J
authors: Greenberg
mesh_terms: D000328:Adult; D000368:Aged; D001290:Attitude; D001294:Attitude to Health; D003430:Cross-Sectional Studies; D036281:Genetic Research; D005820:Genetic Testing; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D010361:Patients / Q000523:psychology*; D010375:Pedigree; D011446:Prospective Studies; D036301:Qualitative Research; D012106:Research; D035842:Research Subjects / Q000523:psychology*; D012162:Retinal Degeneration / Q000235:genetics