神經纖維瘤第一型患者的不確定感與因應方式

Abstract

神經纖維瘤第一型是一種體染色體顯性遺傳疾病，此疾病所引發的生理及行為症狀表現對每位患者來說有很大的差異，疾病所形成的壓力源勢必影響患者，但目前台灣尚未有針對神經纖維瘤第一型的心理社會領域相關研究。 本研究旨在評估神經纖維瘤第一型患者之不確定感及壓力因應方式，以探討人口學和疾病屬性、疾病不確定感及面對壓力所使用之因應方式三者間的關係，及影響壓力因應方式的預測因子。本研究採橫斷性研究，以結構式問卷為研究工具，探討神經纖維瘤第一型患者之不確定感及壓力因應方式，以了解其看待危機事件的動態經驗。資料收集方式採立意取樣，以面對面訪談或電話訪談之方式進行。資料收集內容包括《基本屬性資料表》、《疾病不確定感量表》及《因應方式量表》，以SPSS統計軟體進行資料統計分析。 於不確定感層面，研究結果顯示，神經纖維瘤第一型患者，平均而言之整體不確定感處於中等程度，家中罹病人數對於不明確性不確定感具顯著差異，家中罹病人數愈多，不明確性不確定感愈高。壓力因應方面，研究結果顯示神經纖維瘤第一型患者平均而言傾向採取問題解決取向的因應方式，而不確定感程度與情緒取向的因應方式呈顯著相關；性別、家中罹病人數之不同，對於壓力因應方式的選擇具顯著差異。情緒取向的壓力因應方式，其預測因子為症狀嚴重程度、性別、年齡，及疾病確認診斷後所經時間長度；問題取向的壓力因應方式，其預測因子為家中罹患神經纖維瘤第一型的人數。 本研究結果可提供醫護人員及相關單位參考，規劃如何於心理社會層面協助神經纖維瘤第一型患者，提供最適切之遺傳諮詢內容及相關醫療照護服務，以降低疾病所帶來之不確定感，促進患者在面對壓力時能採取適當的因應方式，進而改善心理適應。

SIGNIFICANCE: Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic condition characterized by much variability in its physical and behavioral manifestations. Stressors from illness influence patients with NF1, but there was no prior psychosocial research for NF1 in Taiwan. PURPOSE: The purpose of this study was to understand the relationships among personal and disease characteristics, uncertainty, stress, and coping style on patients with NF1. The study explored the predictors of coping style as well. METHODS: A cross-sectional research design was used. Eligible subjects were recruited through purposive sampling from OPD of Medical Genetics or phone interview, completed a researcher constructed personal information sheet and valid and reliable measures of uncertainty and coping. Data were analyzed with descriptive statistics, Pearson’s correlation, t test, one way ANOVA and stepwise regressions. RESULTS: The uncertainty level of NF1 patients was moderate. Significant effects existed between number of families with NF1 and ambiguity uncertainty. The level of ambiguity uncertainty rose according to more NF1 members in the same family. Patients with NF1 tended to use problem-focused coping style more often than emotion-focused coping style. The correlation was significant between level of uncertainty and emotion-focused coping style. Significant effects existed between both gender and number of families with NF1. The severity of symptom, gender, age and the duration after being diagnosed predicted the tendency of emotion-focused coping style: The predictive variable for problem-focused coping style was the number of families with NF1.