遺傳諮詢的內容及影響諮詢滿意度的相關因子－以唐氏症為例

Patterns of Genetic Counseling and Factors Affecting Satisfaction for Parents of Children with Down Syndrome

高淑芬(Susan Shur-Fen Gau) ； 李明濱(Ming-Been Lee)

《台灣精神醫學》 19卷3期 (2005/09) Pp. 204-215

https://doi.org/10.29478/TJP.200509.0005

摘要

目的：為了瞭解唐氏兒父母接受遺傳諮詢的現況，父母對遺傳諮詢經驗的滿意程度，以及影響遺傳諮詢滿意度之相關因素。方法：本研究訪談了77位唐氏兒的父母有關遺傳諮詢的內容及滿意度評估，父母並完成簡式性格量表(Maudsley Personality Inventory, MPI)等自填式問卷。結果：研究結果顯示唐氏兒父母的遺傳諮詢82%由醫生進行，平均諮詢時間為26分鐘（標準差=23.5），只有20%的父母對遺傳諮詢的經驗感到滿意。諮商者的態度冷漠、敷衍，提供的資訊不夠充足，進行諮詢的地點不適當，進行時間太短等都讓父母感到不滿意。而父母當時的情緒、經濟狀況、外向性格也會影響遺傳諮詢的滿意度。結論：目前國內對唐氏兒父母的遺傳諮詢，大多是由醫生單方面告知父母有關唐氏症的相關訊息，缺乏雙方的溝通，以及提供心理支持、後續心理輔導、治療的工作。增進遺傳諮詢品質最重要的是改進諮商者的態度，給予父母宣洩情緒的機會和提供足夠的資訊，以協助唐氏兒家庭心理、生活、親子關係等各方面的適應。

關鍵字

唐氏症 ； 遺傳諮詢 ； 遺傳諮詢滿意度

並列摘要

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 were 77 parents of children with Down syndrome who were from 1 to 11 at the time of parental enrollment. Each parent received a semi-structured interview including information about patterns of genetic counseling and their satisfaction with counseling. A 10-item scale with 4-point Likert scale from 0 to 4 was employed. A self-administrated questionnaire, the Maudsley Personality Inventory, was also given to assess the personality of each participant. Results: Physicians had informed 82% of the parents that their child had Down syndrome. The mean duration of the counseling session was 26 minutes (SD=23.5). The majority of parents reported that they did not have a chance to ask question or express their feelings. They also noted that they did not receive enough information regarding the etiology, outcome, and treatment of Down syndrome. Factor analysis only identified one factor associated with counseling satisfaction, with an eigenvalue of 7.85. Predictors of increased satisfaction with genetic counseling included extroverted parents and lower parental economic status, positive counselor's attitude, longer duration of counseling, more information provided, and no negative immediate emotional reaction. Conclusions: This study suggests the need for better doctor-patient communication and for greater attention to the scope of genetic counseling sessions for Down syndrome in Taiwan.

並列關鍵字

Down syndrome ； genetic counseling ； satisfaction with counseling

參考文獻

Cooley WC,Graham JM(1991).Down syndrome: an update and review for the primary pediatrician.Clin Pediatr.30,233-253.

Cunningham CC,Morgan PA,McGucken RB(1984).Down's syndrome: is dissatisfaction with disclosure of diagnosis inevitable?.Dev Med Child Neurol.26,33-39.

Dalton AJ,Crapper-McLachlan DR(1986).Clinical expression of Alzheimer's disease in Down's syndrome.Psychiatr Clin North Am.9,659-670.

Eysenck HJ(1962).The Maudsley Personality Inventory Manual.San Diego, CA:Educational and Industrial Testing Service.

Freeman SB,Taft LF,Dooley KJ(1998).Population-based study of congenital heart defects in Down syndrome.Am J Med Genet.80,213-217.