Immigrant parents* perception about the stem cell transplantation of their child and the provided care in the Netherlands.

See the protocol

The purpose of the present study is to examine the perception of immigrant
parents of their child*s beta thalassemia and the provided care during
treatment with stem cell transplantation in the Netherlands. It is important to
study and learn about the experiences of immigrant parents, because they make
up for a growing percentage of patients in the Dutch health care system. In
most quantitative, self-report studies immigrant parents are excluded because
of language barriers or dropping out early. Learning from their experiences
will enhance knowledge and will improve care.

Parents receive written information about the study (Appendix 1 and 5) and an
informed consent form (Appendix 2 and 6) to fill in and return. When they agree
to participate, an appointment will be made to conduct the interview (Appendix
3 and 4) at the parents* home. Efforts will be made to schedule appointments
with both parents present, but the mother will be the main interviewee. If
present, the father will be asked to participate in the interview after
completion of the interview with the mother.
The interview will be translated in the native language by use of an
interpreter. The interview guide is based on the interview guide developed by
Anna Klassen, a psychologist-researcher who used it in a study on imimmigrant
parents of children with leukemia in Canada. It has been adapted for use in
this patient group, in cooperation with the treating physician of thalassemia
patients. Results of the study undertaken by Klassen et al. have been submitted.

Each interview will be recorded and listened to again before transcription.
Interpretation of the data will exist of uncovering recurrent thematic
statements.

not applicable