Perspectives on Everyday Life Challenges of Danish Young People With Duchenne Muscular Dystrophy (DMD) on Corticosteroids

IF 2.2 Q1 NURSING

Global Qualitative Nursing Research Pub Date : 2022-04-01 DOI:10.1177/23333936221094858

C. Handberg, U. Werlauff, A. Højberg

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引用次数: 3

Abstract

This study aimed to investigate perspectives on everyday life challenges of young persons with Duchenne muscular dystrophy in Denmark treated with corticosteroids perceived by young persons and their parents to improve rehabilitation interventions. Nineteen semi-structured interviews were conducted: 10 individual interviews with 10 persons with DMD and six individual interviews with parents (five mothers and one father) and three couple interviews (three mothers and three fathers). The analysis was guided by interpretive description methodology and Antonovsky’s Sense of Coherence theory. The results indicated that persons with Duchenne muscular dystrophy existed in a flux between experiencing greater Sense of Coherence revolving around normality and less Sense of Coherence exposing their vulnerability which unfolded in four opposing themes: (1) bodily ability and disability, (2) content and anxious, (3) sociable and lonely, and (4) independent and dependent. Future rehabilitation should aim at supporting resistance resources promoting bodily ability, being content, sociable, and independent.

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糖皮质激素对丹麦年轻人杜氏肌营养不良症(DMD)日常生活挑战的影响

本研究旨在调查丹麦Duchenne肌营养不良年轻人的日常生活挑战，这些年轻人及其父母认为皮质类固醇治疗可以改善康复干预。进行了19次半结构化访谈：对10名DMD患者进行了10次个人访谈，对父母进行了6次个人访谈（5名母亲和1名父亲），对夫妇进行了3次访谈（3名母亲和3名父亲）。分析以解释性描述方法论和安东尼诺夫斯基的连贯感理论为指导。研究结果表明，Duchenne肌营养不良患者在经历更大的围绕正常的一致感和更少的暴露其脆弱性的一致感之间存在着变化，这表现在四个相反的主题上：（1）身体能力和残疾，（2）满足和焦虑，（3）社交和孤独，以及（4）独立和依赖。未来的康复应旨在支持抵抗资源，促进身体能力、满足感、社交能力和独立性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Global Qualitative Nursing Research NURSING-

CiteScore

2.90

自引率

5.90%

发文量

审稿时长

12 weeks

期刊介绍： Global Qualitative Nursing Research (GQNR) is a ground breaking, international, peer-reviewed, open-access journal focusing on qualitative research in fields relevant to nursing and other health professionals world-wide. The journal specializes in topics related to nursing practice, responses to health and illness, health promotion, and health care delivery. GQNR will publish research articles using qualitative methods and qualitatively-driven mixed-method designs as well as meta-syntheses and articles focused on methodological development. Special sections include Ethics, Methodological Development, Advancing Theory/Metasynthesis, Establishing Evidence, and Application to Practice.