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The Journal of Nursing Research MEDLINESCIEScopusSSCITSSCI

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篇名 The Formal Support Experiences of Mothers of Adolescents With Intellectual Disabilities in Edinburgh, UK: A Longitudinal Qualitative Design
卷期 18:1
並列篇名 英國愛丁堡智能不足青少年的母親對專業支持之經驗:縱貫式質性研究
作者 Mei-Chun LinMaureen MacmillanNorrie Brown
頁次 34-43
關鍵字 qualitative study.adolescents with intellectual disabilitycaregivers’ experiencesprofessional support質性研究。智能不足青少年專業支持照顧者經驗MEDLINEScopusSSCITSCITSSCISCIE
出刊日期 201003

中文摘要

背 景
現行英國照護體制下,智能不足兒的照顧模式已由機構轉移至社區。家庭成員在家庭裡常扮演著照顧者的角色,而提供照顧者在生活需求上的幫助是一個重要的課題。

目 的
本研究之目的為認識智能不足青少年的母親獲得專業支持之看法。

方 法
以縱貫式質性研究分三個階段進行收案,時間分別是初始、六個月後及十八個月後。資料收集採用半結構式的訪談指引,共訪談7位母親,訪談過程皆有錄音及逐字譯稿,其資料分析則採用持續比較法。

結 果
此研究結果發現三個主題:複雜的情緒、對支持的看法及作戰反應。母親們表達對於專業支持的經驗有不同程度的滿意及不滿意。部份母親接獲喘息服務,表達此服務為有助益性的介入方法。然而,部分母親感受到健康照護專家的感覺遲鈍、缺乏了解及同理心,並且剝削智能不足兒童之人格及價值地位。母親們在向社會福利部門申請財務支持的「搏鬥的過程」中是充滿壓力。

結 論/實務應用
研究結果建議,專業支持對智能不足青少年的母親是重要且必要的,但是專家們應將心比心,並且瞭解照顧者的敏感情緒及尊重個別性的反應。

英文摘要

Background: In the United Kingdom, healthcare provision for children with intellectual disabilities (ID) has shifted away from institutions to the community. Today, family members most often assume the primary caregiver role and look after care recipients in the home. The support needs of caregivers,therefore, represent an important area of research that should
help caregivers enhance their quality of life.

Purpose: The aim of this study was to understand the received formal support perceptions of mothers of ID adolescents over time.

Methods: This study used a longitudinal qualitative method in three phases. Semistructured interviews were conducted with seven mothers at three points in time (initial, at 6 months,and at 18 months). Constant comparative analysis was conducted on transcribed interviews.

Results: The three themes that emerged from research included (1) the process of complex emotions, (2) the perception of received support, and (3) the process of fighting reactions. Mothers expressed different levels of satisfaction and dissatisfaction with the range of support received. Respite care was, overall, a beneficial intervention for participants.
However, some mothers felt health professionals to be insensitive, showing lack of understanding and empathy,diminished personhood, and perceived lack of respect for the human value of their children with ID. The ‘‘fighting process’’ experienced when applying for financial help from
the social welfare system was also pointed out as stressful. Further exploration of the professional support needs of mothers is important to support effectively their effective caregiving role.

Conclusions and Implications for Practice: Professionals should increase their awareness of caregiver sensitivities and be respectful of individual responses by providing empathy and understanding from the caregivers’ point of view.

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