白化症兒母親的生活經驗

Living Experiences of Mothers with Albinism Children

黃琬淇(Wan-Chi Huang)

指導教授 ： 林俐伶

長榮大學/健康科學學院/護理學系(所)/碩士(2010年)

https://doi.org/10.6833/CJCU.2010.00013

摘要

中文摘要
本研究旨在探討白化症兒母親的生活經驗，運用半結構式訪談指引
，以深度訪談方式收集資料，採現象學研究法進行資料分析。以立意取樣滾雪球方式於民國九十八年十一月至九十九年二月期間進行收案，至資料飽和為止，共訪談七位白化症兒母親。研究結果將白化症兒母親的生活經驗以五個主題18 個次主題呈現，分別為一、情緒的衝擊：為何是我、心情悲苦交雜、無法預知未來的擔憂與恐懼、異樣眼光的傷害、逃避不願面對、委曲求全；二、家庭關係的改變：親人不諒解、家人關係受挑戰、獲得支持跟鼓勵；三、現實的困難：資源欠缺無助、額外的經濟負擔、未獲助益的醫療、求學問題多；四、面對後的所得：意外收穫、正視缺憾不躲避、我也是教養專家了；五、對未來的期待：為孩子預留依靠、期待友善環境。
經由本研究的探討，希望能增進社會大眾對家中育有白化症兒母親
生活經驗的瞭解，進而期待醫療人員、教育人員及社會福利政策方面透過研究的提供，將來對尋求協助的白化症兒母親可更積極主動提供資源服務，減輕其衝擊與無助感，使母親獲得實質上幫助與支持，讓身心得以調適與需求得以滿足。
關鍵詞：白化症、生活經驗、現象學

關鍵字

白化症 ； 生活經驗 ； 現象學

並列摘要

Abstract
The purpose of this study was to explore living experiences of mothers
with Albinism children. A phenomenological research design with
semi-structured in-depth interviews using for data collection was applied in
this study. A total of 7 participants were recruited through purposed and
snowball sampling procedures and the data collection was from November,
2009 to February, 2010. Five themes and 18 subthemes were found from the
study, namely: 1.emotional impact: why me, feeling of sadness and painful,
worry and fear of unknown future, hurt from strange sighted, avoid to face
reality, concession for accommodation; 2. changes of family relationships:
blames from families, family relationships were challenged, receive supports
and encouragements; 3.real life difficulties: limited resources, extra financial
burdens, unhelpful medical, problems in school; 4.gains after facing reality:
surprising gains, facing defects not escape, I am a profession in child rearing;
and 5.expecting for future: preparing supports for children, expecting friendly
environment.
With this study, the researcher hopes that the public will increase
knowledge about living experiences of mothers with Albinism children.
Further, the medical caregivers, educators, and administers of social polices
can be more actively in offering supports and resources in order to reduce
impacts and helplessness for these mothers. Thus, these mothers’ physical and
mental conditions would be able to adjust and their needs can be satisfied.
Keyword: Albinism, Living Experience, Phenomenology

並列關鍵字

Albinism ； Living Experience ； Phenomenology

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