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儿童佩特兹病及其家庭生活的社会、身体和情感影响的观点:一项混合方法研究

Perspectives on the Social, Physical, and Emotional Impact of Living With Perthes' Disease in Children and Their Family: A Mixed Methods Study.

作者信息

Leo Donato Giuseppe, Murphy Rebecca, Gambling Tina, Long Andrew, Jones Helen, Perry Daniel C

机构信息

Liverpool John Moores University, Liverpool, UK.

Cardiff University, Cardiff, UK.

出版信息

Glob Pediatr Health. 2019 Apr 4;6:2333794X19835235. doi: 10.1177/2333794X19835235. eCollection 2019.

Abstract

. To determine the social, physical, and emotional impact of living with Perthes' disease on affected children and their family (caregivers). . Through a mixed methods approach, we interviewed 18 parents and explored the perspectives of 12 children affected by Perthes' disease (mean = 7.1 years, SD = ±4.1 years) using a survey tool. Thematic analysis of parents' interviews provided an insight into disease-specific factors influencing patients and family's daily life activities. Using the childhood survey tool, good and bad day scores were analyzed using MANOVA (multivariate analysis of variance). . Thematic analysis of the parent interviews (main themes n = 4) identified a marked effect of the disease on many facets of the child's life, particularly pain and the impact on sleep, play, and school attendance. In addition, the interviews identified a negative effect on the family life of the parents and siblings. Children indicated that activities of daily living were affected even during "good days" ( < .05), but pain was the key limiting factor. . Perthes' disease negatively affects the social, physical, and emotional well-being of children and their family. These findings provide outcome domains that are important to measure in day-to-day care and add in-depth insight into the challenges caused by this disease for health care professionals involved in clinical management.

摘要

确定患有佩特兹病对患病儿童及其家庭(照顾者)的社会、身体和情感影响。通过混合方法,我们采访了18位家长,并使用一种调查工具探讨了12名患有佩特兹病儿童(平均年龄=7.1岁,标准差=±4.1岁)的观点。对家长访谈的主题分析揭示了影响患者及其家庭日常生活活动的疾病特定因素。使用儿童调查工具,通过多变量方差分析(MANOVA)分析了“好日子”和“坏日子”的得分。对家长访谈的主题分析(主要主题n = 4)表明,该疾病对儿童生活的许多方面有显著影响,尤其是疼痛以及对睡眠、玩耍和上学出勤率的影响。此外,访谈还发现对家长和兄弟姐妹的家庭生活有负面影响。儿童表示,即使在“好日子”,日常生活活动也受到影响(<0.05),但疼痛是关键限制因素。佩特兹病对儿童及其家庭的社会、身体和情感幸福产生负面影响。这些发现提供了在日常护理中需要测量的重要结果领域,并深入洞察了这种疾病给参与临床管理的医疗保健专业人员带来的挑战。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6fa5/6449807/3f1e2b5f7f8b/10.1177_2333794X19835235-fig1.jpg

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