![]() Parent or caregiver refusal was most often due to worry that the interview process would scare their child and show aspects of the disease that parents had not previously shared with their child. Participants had a mean age of 14.6 years, 42.4% were female, and 90.9% indicated a family history of ADPKD ( Table 2). Reasons for exclusion included an unclear type of polycystic kidney disease, parent or caregiver refusal, the time commitment or scheduling conflicts, and not appearing for the scheduled interview. Of this group, 33 adolescents in 13 countries participated in the interviews ( Table 1 and Fig 1). Local market research institute offices contacted the families of approximately 120 adolescents about participating in the interviews and screened them for interest and eligibility. To protect patient confidentiality, only the first name of the participant was used during the interview. Each interview room had a 1-way mirror through which study personnel in an adjoining room could observe the process. For interviews conducted in a language other than English, simultaneous translation was provided for the observing study staff. In countries where English was the native language, the Covance staff or designee moderated the individual interviews in person. The interviews were held in the participant’s native language using the interview guide and were video recorded to aid transcription. Semi-structured interviews were conducted by interviewers employed by Covance Market Access Service who were trained in qualitative research methods and had experience in performing pediatric research. Demographic data and medical history information were collected from the participant and via the parent or guardian. Data collection took place between 20 at the market research facility.
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