Patterns and Satisfaction of Genetic Counseling for Parents of Children with down Syndrome in Taiwan
Resource
TAIWANESE JOURNAL OF PSYCHIATRY v.19 n.3 pp.204-215
Journal
TAIWANESE JOURNAL OF PSYCHIATRY
Journal Volume
v.19
Journal Issue
n.3
Pages
204-215
Date Issued
2005
Date
2005
Author(s)
GAU, SUSAN SHUR-FEN
LEE, MING-BEEN
Abstract
Down syndrome;genetic counseling;satisfaction with counsel
Subjects
Objective: To examine the content and pattern of genetic counseling and to determine the factors affecting the extent of satisfaction with genetic counseling among parents of children with Down syndrome. Methods: The participants consisted of 77 parents of children with Down syndrome. These children, aged 1 to 11, were recruited from National Taiwan University Hospital, Down Syndrome Foundation, and primary schools. Each parent received a semi-structured interview to provide information about genetic counseling and their satisfaction with counseling, a 10-item scale with 4- point Likert scale from 0 to 4, and a self-administrated questionnaire, the Maudsley Personality Inventory, for measurement of personality. Results: Our results showed that 82% of parents were informed by physicians, the mean duration of counseling was 26 minutes (SD = 23.5), the majority of parents did not have a chance to ask question or express their feelings, and they did not receive enough information regarding the etiology, outcome, and treatment for Down syndrome. Factor analysis only identified one factor for the satisfaction with counseling with eigenvalue of 7.85. Parents with extroverted and lower economic status, positive counselor’s attitude, longer duration of counseling, more information provided, and no negative immediate emotional reaction predicted increased satisfaction with genetic counseling. Conclusions: The predictors for satisfaction with genetic counseling and ideal genetic counseling scenario revealed in this study are similar to those in the Western Countries. Hence, our findings contribute the direction of improvement in genetic counseling in Taiwan. (Full text in Chinese)