親屬、友誼網絡對遺傳諮詢求醫行為之探討

The role of kinship and friendship network in Genetic Counseling Seeking

郭惠珍(Huey-Jen Kuo)

指導教授 ： 胡務亮 ； 陳端容

國立臺灣大學/醫學院/分子醫學研究所/碩士(2005年)

https://doi.org/10.6342/NTU.2005.02154

摘要

隨著人類遺傳學的突飛猛進，特別是細胞、生化和分子遺傳學的知識與技術被廣泛用於遺傳疾病的產前診斷、遺傳篩檢或基因治療等方面，所以有越來越多的人需要遺傳諮詢服務。個人的求醫行為一般會受到許多因素影響，包括親屬及友誼網絡等。因為遺傳相關知識取得不易，其病因又和家族成員相關，在台灣，甚至中國人，目前還不瞭解遺傳諮詢求醫行為和親屬及友誼網絡之相關性。
本研究的設計為立意取樣方式，以台大醫院基因醫學部遺傳門診中15-65歲的求醫者為研究對象，共有208位參與研究。研究工具為結構式問卷，包括：求醫者基本特性資料表、人格特質量表、遺傳認知量表、遺傳疾病病識感量表、親屬網絡關係量表、友誼網絡關係量表等六部份。所收集資料經編譯建檔後，以套裝軟體SPSS 12.0 for Windows進行資料的統計分析。
研究結果發現：一、平均而言，每位研究對象提出2.70位聯繫親屬，以配偶、母親為主，1.85位聯繫朋友，以同事、同班同學為主，彼此關係大多數以親近為居多。二、親屬是否陪同求醫、求醫後是否與求醫者再討論，與求醫者之自主性相關；親屬是否支持求醫、求醫前是否與求醫者討論、求醫時是否提供求醫者協助等，與求醫者之醫囑遵從性相關。三、朋友是否提供求醫訊息及是否陪同求醫，與求醫者之自主性相關；朋友是否支持求醫、求醫前是否與求醫者討論，與求醫者之醫囑遵從性相關。四、求醫者求醫前聯繫之朋友人數比其他疾病之求醫者少，可能因遺傳疾病之特殊性導致社會關係孤立。五、多變項邏輯迴歸分析中，在控制基本特性與遺傳認知變項後，親屬關係變項中「求醫後再討論」是對求醫行為最具解釋力的因素，親屬支持求醫的評鑑性支持，對求醫者而言有不小的影響力量。
如此可知求醫者親屬、友誼網絡與遺傳諮詢求醫行為有顯著相關。因為懷疑的是遺傳疾病，與親屬可能有關聯，但親屬網絡關係仍強力的支持其求醫行為，包括求醫後之討論，且正面影響其醫囑之遵從性；求醫者之友誼網絡朋友聯繫人數較少，暗示可能因其疾病遺傳之特性，導致在求醫行為上顯現出其社會孤立性，值得我們進一步的注意。

關鍵字

遺傳諮詢 ； 遺傳諮詢求醫行為 ； 親屬網絡 ； 友誼網絡

並列摘要

In recent years the progress of human genetics is very rapid, especially in the fields of cell biology, biochemistry and molecular genetics. These technologies are now applied widely in prenatal diagnosis, genetic screening and gene therapy, etc., and therefore the requirement for genetic counseling is increasing quickly. Medical seeking is usually affected by many factors including the kinship and friendship networks. Owing to the difficulties in obtaining and understating genetic information, and the complex links of genetic diseases with the family members, the behavior of seeking for genetic counseling may be different from that for other diseases. Currently there is still no related data in Taiwan in the Chinese societies.
This is a survey by purposive sampling. There were 208 individuals seeking for genetic counseling willing to participate in this study. Their ages ranged from 15 to 65 years. A structured questionnaire was used, and the contents included: personal characteristics, personality inventory, genetic cognition scale, insight scale, kinship network scale, and friendship network scale. The data were translated and analyzed by the SPSS/Windows 12.0 software.
The findings were: First, each individual proposed 2.70 relatives (primarily spouses and mothers) and 1.85 friends (primarily colleagues and the classmates) with intimate relationship. Second, for the kinship, accompany during medical seeking and discussion after medical seeking were positively correlated to Medical seeking. Supporting for medical seeking and discussion before medical seeking were positively correlated to compliance. Third, for friendship, providing for related information and accompany during medical seeking were positively correlated to seeking autonomy. Supporting for medical seeking and discussion before medical seeking were positively correlated to compliance. Fourth, friendship was weaker in individuals seeking for genetic counseling than for other medical purpose. Fifth, logistic regression analysis data, after control for basic characteristic and the genetic cognition items, revealed that discussion after seeking is the most explainable factor influencing medical seeking behavior for genetic counseling.
Therefore there are close correlations between kinship and friendship networks and seeking for genetic counseling. Although the relatives may be cursed for the disease, kinship still strongly supports the seeking for genetic counseling. For example the discussing after genetic counseling positively affects the compliance. On the other hands, the friendship network seems to be weaker in this group of individuals. This suggests that hereditary character of the diseases may induce social isolation, which should worth further attention in the future.

並列關鍵字

genetic counseling ； genetic counseling seeking ； kinship network ； friendship network

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