比較成骨不全症之青少年及其主要照顧者對疾病關注內容和因應策略

Comparing the Concerns and Coping Strategies of Adolescents with Osteogenesis Imperfecta to Their Caregivers

王雪鳳(Hsueh-Feng Wang)

指導教授 ： 陳月枝

國立臺灣大學/醫學院/護理學研究所/碩士(2006年)

https://doi.org/10.6342/NTU.2006.02828

摘要

本研究的目的是探討成骨不全症之青少年及其主要照顧者對疾病在照護過程中所關注的內容及因應的策略。
本研究採質性研究，以半結構式訪談指引分別與十位主要照顧者及六位青少年個案進行深度訪談，以內容分析法作系統性的分析。
研究結果發現：成骨不全症之青少年及其主要照顧者（一）共同的關注內容，在「疾病醫療的困境」為骨折處置、疾病看法、診斷特徵、身體活動和遺傳問題；在「照護的摸索與未來的不確定」為生活照護和生活工作；在「社會人際互動的障礙」為異樣眼光、與家人的互動和與老師的互動。（二）相異的關注內容，在「疾病醫療的困境」為矯正手術；在「照護的摸索與未來的不確定」為婚姻生育、課程參與、入學情況、骨折狀況、出外活動和就學學習；在「社會人際互動的障礙」為與同學互動、學校資源、社會團體資源和環境資源、與醫療人員的互動、與他人的互動、經濟花費和政府資源。所採取的因應策略皆以「運用思考評估分析」最多，其次是「抒發情緒心理支持」，再其次為「面對問題具體解決」。
本研究結果可供醫療護理人員參考，製作照護指導手冊，協助醫療護理人員對成骨不全症的認識與瞭解，以適時提供患童及主要照顧者適當的訊息與支持。

關鍵字

成骨不全症 ； 主要照顧者 ； 青少年 ； 關注 ； 因應策略

並列摘要

The purpose of this study is the concern caregivers issue with regards to strategies and coping with adolescents who have Osteogenesis Imperfecta.
The designed study was a descriptive qualitative approach. There was an in-depth interview with the 10 caregivers and 6 adolescents by a semi-structured interviews guide and the interview contents were systematically analyzed using content analysis.
The results of the study through caregivers and adolescents have same concerns in medical treatment with "fracture repairs","medical viewpoints","diagnosing characteristics","physical activities"and"heredity". With respect to care and future outlook issues listed included: "daily care"and"future profession". Personal interactions were divided up into "discrimination","interactions with teachers"and"interactions with families". Then they have different concerns in medical treatment with "surgical operation". With respect to care and future outlook issues listed included: "marriage and raising","enterig classes at schools","conditions of entering schools","fractures conditions","outside activities"and"situations of learning at schools". Personal interactions were divided up into "interactions with classmates","interactions with medical staffs","interactions with others","school resources","social associated resources","enviromental resources","governmental resources"and"economic spending". Furthermore, the coping strategy for the major caregivers and adolescents were the cognitive operation, the emotion response. and the problem solving.
The finding of this research can be a care-guide book to help nursing staff understand this disease, provide relevant information, support caregivers and adolescent with Osteogenesis Imperfecta.

並列關鍵字

Osteogenesis Imperfecta ； caregiver ； adolescent ； concer ； coping strategy

參考文獻

王作仁（1991）•醫學遺傳學•台北：聯經。

毛新春（2002）•疾病對兒青少年社會發展的衝擊•護理雜誌，49（3），24-29。

田聖芳（2001）•先天性缺陷兒母子互動關係與影響因素•護理雜 誌，48（2），65-69。

金繼春（1986）•學齡白血病患童母親所感受到的壓力源及其應變策略•高雄醫學科學雜誌，2(1)，688-693。

罕病全數納入重大傷病（2002）•財團法人罕見疾病基金會會訊，（13），1-2•2005年3月17日取自http://www.tfrd.org.tw/aca/infofile/0013/13-01.pdf