迪喬治症病童氣質、照顧者親職壓力與生活品質之探討

Abstract

研究背景： 迪喬治症候群(DiGeorge Syndrome, DGS)，是因為第22 對染色體長臂的22q11.2 位置發生微小缺失（Microdeletion）所致，與此症的臨床症狀包括先天性心臟病、副甲狀腺功能低下與顎裂。因其疾病為特殊罕見疾病性，其照顧者可能感受到更多的壓力與生活品質的干擾，故希望探討其相關因素。 研究方法： 採立意取樣方式，以北部三家醫學中心兒科門診及病友會中，針對迪喬治症候群及先天性心臟疾病之照顧者共52位研究，再以一般兒童照顧者54位作為對照組。研究工具為結構式問卷，內容包括研究對象及孩童的基本資料、生活品質問卷、親職壓力量表、親職韌性量表、兒童氣質量表、兒童及家長基本屬性相關問卷。所收集資料經編譯建檔後，進行資料的分析。 研究結果： 照顧者在基本資料上無論是年齡、教育程度、收入條件等皆無明顯差異，而患童資料則在出生體重(p<0.001)及生長滿意度上(p<0.001)有明顯差異，以迪喬治症患童最差，先天性心臟病患童其次，一般兒童最好。 生活品質上三組在生理、心理、社會及環境四個範疇均無明顯差異，但在總分評分上以迪喬治症患童照顧者最差(69.04分)，其次則為先天性心臟病患童之照顧者(73.65分)。 親職壓力中幼兒教養為最高分、其次為外界環境壓力與生活調適；以年齡分析，患童小於三歲則照顧者壓力反而以幼兒教養為最高分。 在教養態度與兒童氣質上無明顯差異，但在疾病嚴重程度上有明顯差異，其壓力與病情嚴重度有相關。 研究結論： 研究發現迪喬治症照護者其生活品質評分較差與親職壓力有負相關，而其壓力來源為兒童的病情嚴重度，故建議能讓照顧者更加了解其疾病及未來可能所需面對問題，並介紹相關病友多予支持，提早做好相關心理準備而能減輕其壓力以提升生活品質。

Background: DiGeorge Syndrome (DGS) is a disease caused by a microdeletion of the 22q11.2 position on the long arm of 22nd chromosome. The clinical symptoms of this disease include congenital heart disease, hypothyroidism and cleft palate. Since this is a kind of rare disease, their caregivers may feel more stress and the quality of life is interfered, so we would like to to explore related factors. Methods: Samples were collected from pediatric outpatient and patient associations of the three medical centers in the north of Taiwan. A total of 52 studies were conducted for the caregivers of DiGeorge syndrome and congenital heart disease, while 54 from general child caregivers were used as the control group. The research is based on a structured questionnaire, which includes the basic information of the study subjects and children, the quality of life questionnaire, the parental stress scale, the parental toughness scale, the child's gas quality table, and the basic attributes of children and parents. The collected data is compiled, filed and then analyzed. Result: First of all, according to the basic information given, there is no significant difference between the caregiver in terms of age, education level, income conditions, etc. However, the data from the children showed a significant difference in birth weight and growth satisfaction. The child with DiGeorge syndrome is the worst and follow by the children with congenital heart disease. Secondly, the quality of life in the three groups considered physical, psychological, social and environmental aspects, there are no significant differences. However, similar to result of the satisfaction from children, the total score showed that caregiver of the children with DiGeorge syndrome is the worst and children with congenital heart disease is second. Third, analysis of the parental stress scale demonstrated that the pressure from external environment has the highest score, followed by the adjustment of child rearing and life. If segmented using age analysis, the results showed that when child is less than three years old, the pressure of the caregiver mostly come from raising and teaching children. At last, the pressures of the caregiver showed no significant correlation with parenting attitude and child temperament, but a strong positive correlation with the severity of the disease. Conclusion: This study showed that the poor quality of life scores from DiGeorge syndrome caregivers were negatively correlated with parental stress, while the source of stress was majorly the severity of the child's condition. It is highly recommended that the caregiver should be better informed regarding the disease and the problems that they may encounter in the future. Moreover, introducing the caregivers to relevant patients may give them more support and help them build up psychological preparations in advance. Eventually, we hope this can reduce their stress and improve the quality of life.