The Stress of Caring for Children With Asthma: A Qualitative Study of Primary Caregivers

氣喘兒童的照護壓力：主照顧者之質性研究

陳淑賢(Sue-Hsien Chen) ； 黃璟隆(Jing-Long Huang) ； 葉國偉(Kuo-Wei Yeh) ； 蔡芸芳(Yun-Fang Tsai)

《The Journal of Nursing Research》 23卷4期 (2015/12) Pp. 298-307

https://doi.org/10.1097/jnr.0000000000000083

摘要

背景：氣喘是兒童最常見的慢性病，由於急性氣喘會反覆、不定性的發作，隨時會危及生命，對於患童及其家庭的日常生活產生深遠的影響。瞭解主要照顧者的經驗，或許能提供患孩更好的照顧。目的：本研究目的是探討氣喘兒童之主照顧者氣喘照護經驗。方法：採質性研究法，於臺灣北部的兩家醫學中心及一家區域醫院被診斷氣喘一年內的兒童之17 位主照顧者（受訪者）為訪談對象，以半結構問卷之訪談指引收集資料，運用內容分析法進行資料分析。結果：歸納出三個主題及十個類別：㈠生病不確定性感受（疾病認知、信息缺乏），㈡混亂和不穩定感受（擔心，恐懼，沮喪，無助，身體不適），以及㈢社會緊張和家庭衝突（生活失序和照顧負荷、經濟負擔、家庭關係緊張和分歧）。結論／實務應用：負面的氣喘照護經驗和不可預測性的結果，照顧者適應似乎受影響，致使他們察覺到他們無法應付的疾病。經由訪談瞭解主照顧者經驗，我們希望能提供照顧者於應對氣喘兒更平順。

關鍵字

主照顧者 ； 照護經驗 ； 氣喘 ； 兒童

並列摘要

Background: Asthma is one of the most common chronic diseases in children. The unpredictability, frequency, and health risks associated with acute asthma attacks have a profound impact on the daily lives of affected children and their families. Understanding the experiences of primary caregivers may help nurses provide better care to children with asthma. Purpose: This study explores the experience of primary caregivers in providing care to children with asthma. Methods: The study used exploratory and descriptive research methods and collected data using a qualitative research interview approach. Seventeen primary caregivers of children with asthma who visited the allergy clinics of two medical centers and one regional hospital in northern Taiwan participated in the study. An interview guide with a semistructured questionnaire was used, and verbatim transcripts of the audiotape-recorded interviews were analyzed using content analysis. Results: The findings are described in three themes covering 10 categories. These themes and categories include feelings of uncertainty during illness (disease as perception related, lack of information), feelings of chaos and instability (worry, fear, frustration, helplessness, physical distress), and social tension and family conflict (disorientation of daily activity and burden of care, economic burden, family tensions and disagreements). Conclusions: Negative experiences with asthma care and the unpredictability of the disease outcomes impair the ability of caregivers to adapt successfully to their caregiving role and encourage perceptions that they cannot cope with this illness. Better understanding the caregiver experience may assist healthcare providers to better target support to these caregivers so that they are better able to care for children with asthma.

並列關鍵字

primary caregiver ； caring experience ； asthma ； child

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