先天性代謝異常疾病患童母親之親職壓力與生活品質之探討

Abstract

本研究目的是探討先天代謝異常疾病患童母親的親職壓力與生活品質，及相關影響之變項。研究設計採立意取樣方式，以中部某醫學中心兒科代謝門診及病友會中，針對先天代謝異常疾病且需要蛋白質飲食控制之患童的母親為研究對象，共有35位參與研究，再以兒童年齡、性別、母親年齡、教育程度四個條件進行配對，選出35位一般健康兒童母親為對照組。研究工具為結構式問卷，內容包括：研究對象之基本屬性資料、患童疾病特徵及飲食情形、母親尋求遺傳諮詢及社會資源、Abidine 短型親職壓力量表、台灣簡明版世界衛生組織生活品質量表等五部份。所收集資料經編譯建檔後，以套裝軟體SPSS 10.0 for windows 進行資料的分析。 研究結果發現：一、患童年齡平均為4.40±2.15歲，疾病種類以胺基酸代謝異常最多，其中苯酮尿症佔37.2％，患童完全、大部分有飲食控制者各佔71.4%、25.7%，發展評估正常者居多(60％)；患童母親年齡平均為32.51±4.81歲，教育程度以專科為多，無職業、處低社經地位、家庭每月平均收入以4-5萬者居多，有家人協助者最多(91.4％)。二、患童母親的親職壓力顯著高於健康組母親，患童母親壓力範疇以親職愁苦壓力最高，親子互動失調壓力最低；患童年齡4-6歲的母親親職壓力最高，患童疾病為楓糖尿症、有復健及復健次數越多、發展不好者的母親，其親職壓力較大；患童母親的教育程度、家庭每月收入、自覺健康情形等與母親親職壓力有顯著的負相關。三、患童母親的生活品質顯著低於健康組母親，患童母親生活品質範疇以社會關係範疇最高，心理範疇最低；患童有復健及復健次數越多、發展不好者的母親，其生活品質較差，患童年齡越大才開始飲食控制、且需要餵食者的母親，其生活品質也較低；患童母親的家庭每月收入、自覺健康情形與母親生活品質有顯著正相關，有家人協助照顧患童者，其母親的生活品質較高。四、患童母親整體親職壓力與整體生活品質有顯著的負相關，尤其在生理健康、心理、及環境範疇有顯著相關。 如此可知患童及母親的基本屬性、患童疾病特徵及飲食控制情形、母親有家人協助等與母親的親職壓力與生活品質有顯著相關，對於要如何減低患童母親的親職壓力進而提升其生活品質，將是我們努力的方向。

The purpose of this study was to investigate the parental stress and quality of life of mothers of children with inherited metabolic diseases and to explore the related factors. Subjects of the study consisted of 35 children with inherited metabolic diseases, requiring low protein diet control, and their mothers. For comparison, the control group consisted of 35 normal children and their mothers. The children’s age, sex and the mothers’ age and education matched those of the study group. They were all enrolled by purposive sampling. The data were collected in the form of questionnaires, including: （1）the basic information of the children and mother, （2）characteristics of disease and dietary situation,（3）the frequency of mothers asking for genetic counseling and social resources,（4）parental stress scale (PSI/SF), and（5）quality of life scale (WHOQOL-BREF). The data were analyzed with the software SPSS 10.0 for windows. The major findings of the study are as follows： 1. 35 children with inherited metabolic diseases were recruited in this study. Their mean age was 4.40±2.15 years. Most of them were involved with amino acid metabolic defects； 35% of them had phenylketonuria and complete (71%) or almost complete (26%) diet control, and 60% of them enjoyed normal development. The mean age of their mothers was 32.51±4.81 years. The majority of them had junior college degree without professional occupation, and most of them were in the low socioeconomic status. The family income was NT$ 40,000-50,000 per month in most families. 91% of the mothers had other family members’ assistance to care for her child. 2. Significantly higher parental stress was revealed in the mothers having children with inherited metabolic disease compared with those with healthy children. However, in those who revealed high parental distress, the parent-child dysfunctional interaction stress was the least. mostly mothers with children at the age of 4-6,Children with maple syrup urine disease and poor development who had undergone rehabilitation frequently generated the highest parental stress. Mother’s education level, monthly family income and self-perception about health condition had negative correlation with mother’s parental stress. 3.The mothers of children with inherited metabolic disease revealed lower quality of life scale. These mother’s quality of life was high in the social domain, and low in the psychological domain; it was worse if the children were with poor development and required more rehabilitation and if the children started diet control at an older age. Family income and self-perception about health condition had positive correlation with the mothers’ quality of life. They would have comparatively better quality of life if there were other family members to take care of the children. 4. Overall, the mothers’ parental stress had significant negative correlation with their quality of life, especially in physical health and in psychological and environmental domains We conclude that in mothers having children with inherited metabolic disease, the basic social-economic factors of the mother, children’s disease characteristics, diet control status, availability of other family members’ assistances, etc., have significant correlation with the mothers’ parental stress and their life quality. Further efforts to decrease the mother’s parental stress and improve their quality of life are warranted.