羅素西弗氏症患者母親如何在照顧困境中發展復原力的探索研究

How the mothers of the patients with Russell-Silver syndrome develop resilience in the caring delimma? An exploratory study

李心妤(Hsin-Yu Lee)

指導教授 ： 潘惠銘

中原大學/人文與教育學院/特殊教育研究所/碩士(2014年)

https://doi.org/10.6840/cycu201400232

摘要

本研究旨在瞭解羅素西弗氏症患者母親照顧困境中復原力的發展。本研究藉由敘說研究的方法，透過半結構式的深度訪談方法，訪談三位素西弗氏症患者母親，獲得九份敘說文本，並根據敘說文本撰寫出三位羅素西弗氏症患者母親的生命故事，並歸納出她們的復原力可能發展過程圖。在掌握三位母親的敘說焦點並加以分析及詮釋後，本研究的結論如下：（一）羅素西弗氏症患者母親所面臨的照顧困境包括：生理負擔重、盤根錯節的負面情緒、人際互動受挫、經濟負荷沉重、層出不窮的醫療難題與社會環境的不友善等層面；（二）羅素西弗氏症患者母親突破照顧困境的復原力因子包括三大類：個人特質、家庭支援、社會支持；（三）羅素西弗氏症患者母親突破照顧困境後的正向適應表現包括十個項目：調適心情的能力變佳、展現內控信念、觀念想法做法都改變、學會面對挑戰、容忍力提高、主動尋求協助、發覺生活趣事、享受親密親子關係、對孩子的未來有期待、願意和他人分享照顧經驗；（四）羅素西弗氏症患者母親突破照顧困境的復原力發展是一個照顧困境與復原力因子互相交互作用後邁向正向適應表現的一個循環過程。

關鍵字

羅素西弗氏症 ； 復原力 ； 敘說研究

並列摘要

The purpose of this research was to understand how the mothers of the patients with Russell-Silver syndrome develop resilience from caring dilemma. The narrative research methodology was conducted. Three mothers of the patients with Russell-Silver syndrome were interviewed by using semi- structured in- depth interview and nine narrative texts were obtained. Based on the narrative texts the life stories of the three mothers and the diagram of developing process of their resilience could be outlined. After analyzing and interpretation of the narrative focus the conclusions of this study are as follows: ( a ) The caring dilemma of the mothers of the patients with Russell-Silver syndrome include: physiological burden, complex and negative psychological experiences, frustrated human interaction, heavy economic burden, continuingly difficult medical problems and unfriendly social environment； ( b ) There are three resilience factors from which the mothers of the patients with Russell-Silver syndrome gain the strength to overcome the caring dilemma: personal characteristics , family support and social support; ( c ) The mothers of the patients with Russell-Silver syndrome show positive adaptation to the caring dilemma in ten aspects : the ability to adapt mood is getting better, internal focus of control, changed attitude and practice of caring, improved tolerance, active help-seeking behavior, sense to enjoy life events, enjoyment of the intimate parent-child relationship, development of future perspectives for their child , and the willingness to share caregiving experiences; （d）The mothers of the patients with Russell- Silver syndrome develop resilience in a cyclic process in which a caring dilemma interacts with the resilience factors and move toward the positive adaptation.

並列關鍵字

narrative research ； Russell-Silver syndrome ； resilience

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