透納氏症患孩父母親職壓力與生活品質之探討

Abstract

本研究為探討透納氏症患孩父母的親職壓力與生活品質之相關影響變項。研究採立意取樣方式，於醫學中心遺傳內分泌科門診及病友協會收案，共有64位父母參與研究。研究工具為結構式問卷，內容包括研究對象的基本資料、患孩的基本資料、親職壓力量表及生活品質問卷。 研究結果顯示： 一、 透納氏症父母的親職壓力感受程度由高至低排序為：親職愁苦的壓力、親子互動失調的壓力、困難兒童的壓力。 二、 透納氏症父母的親職壓力會因家庭收入、患孩的體重、診斷時期、是否接受生長激素治療及參與病友團體等不同而有差異；且參與病友團體的父母在困難兒童的感受壓力最低。 三、 透納氏症父母的生活品質會因婚姻關係、家庭型態、孩子數之不同而有差異；且生活環境品質與自身年齡有正相關，表示年齡越大生活環境品質越好。 四、 透納氏症父母的親職壓力與生活品質有相關性，以多元逐步迴歸分析，親職愁苦的壓力可以解釋生活品質變異量的30.9%。 根據研究結果，建議遺傳諮詢人員介入病友團體，以專業角色與患者、家長一同分享經驗，協助患者及家長調適疾病帶來的衝擊。

The purpose of this study was to investigate the influential factors associated with parental stress and quality of life in parents of Turner syndrome patients. Purposive sampling was used in collecting total samples of 64 parents from genetic endocrine outpatient medical centers and the Patients Association. Structured questionnaire were used to conduct the survey including basic information on subjects suffering from the Turner syndrome patient, parenting stress scale and quality of life. The results showed that: 1. In descending order, the perception levels of Turner syndrome parents on parenting stress were as follows: parenting anxiety, parent-child interaction dysfunction, the difficulty in raising the child. 2. The extent of parenting stress was influenced by family income, child''s body weight, diagnosis age, whether growth hormone therapy was employed and whether parents joined patients groups. Parents joining patient association experienced lowest stress level. 3. Quality of life in Turner syndrome parents, was directly associated with the quality their marriage, family type, number of children; and quality of life was found to be positively correlated with their own age, indicating older parents would have better quality of life. 4. Turner syndrome parents, parenting stress and quality of life were analyzed by multiple stepwise regression and the differences in life quality can be explained by the level of parental anxiety to 30.9%. Based on the findings, we recommend genetic counselors to actively participate in patient groups, and must play the professional role in assisting patients and parents with various challenges in life.