应对策略干预对唐氏综合症患儿母亲生活质量的影响

Seham Mohammed Elmwafie, Amany Ibrahim Abdalla Ibrahim, Huwida Hamdy Abd elmonem, Mervat Amin Sayed, Soad Ahmed
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摘要

背景:照顾患有唐氏综合症的孩子需要特殊的挑战,母亲们可能会经历一段难以适应的时期。因此,积极态度的应对策略被认为对改善母亲及其子女的生活质量有效。目的:本研究旨在评估应对策略干预对唐氏综合症母亲生活质量的影响。方法:采用准实验研究设计(前测/后测一组)。环境:本研究在艾因沙姆斯大学附属儿科医院专科诊所DS基因诊所进行。样本:有目的的样本包括从上述环境中招募的(75)名患有唐氏综合症的母亲和她们的孩子。工具:干预前后使用五种工具收集数据;采用结构化访谈问卷评估母亲对退行性痴呆的相关知识;自力更生评估:评估残疾儿童在母亲报告的日常生活活动方面的独立程度;需求量表用于评估母亲的认知、经济、心理、社会和身体需求;采用应对模式量表评估唐氏综合征患儿母亲的应对模式,采用家庭生活质量量表评估唐氏综合征患儿母亲的健康相关生活质量。结果:干预前后母亲的知识、生活质量、需求、应对方式均有显著改善(p <0.001);干预前后儿童的完全自立与母亲的总需求、生活质量、应对方式均有显著正相关(p=< 0.001)。结论:实施应对策略干预对提高母亲的知识水平、需求水平、应对方式和生活质量均有积极作用。建议:经常开展教育项目,重点是鼓励母亲有效地应对患有退行性残疾的孩子。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Effectiveness of Coping Strategies Intervention on Quality of Life for Mothers having Children with Down Syndrome
: Background: Caring child with Down Syndrome (DS) requires special challenges, and mothers can go through a period of difficulty adapting. So, coping strategies with positive attitudes are considered effective in improving quality of life for mothers and their children. Aim : The study aimed to evaluate the effectiveness of coping strategies intervention on quality of life for mothers having children with Down Syndrome. Method: A quasi-experimental research design (one group pre/posttest) was used. Setting: This study was conducted at the Genes Clinics of DS in the Specialized Clinics of Pediatric Hospital affiliated to Ain Shams University. Sample: A purposive sample consisted of (75) mothers and their children with down syndrome recruited from the above-mentioned setting. Tools: Five tools were used pre /post intervention to collect data; A structured interviewing questionnaire to assess mothers’ knowledge related to DS; Self-reliance assessment to assess level of independence of DS children regarding daily living activities as reported by their mothers; Needs’ scale to assess cognitive, economical, psychological, social, and physical needs experienced by the mothers; Coping patterns scale to assess the mothers' coping patterns toward their DS children, and Family quality of life scale to assess health related Quality of Life (QoL) for mothers of children with down syndrome. Results: There was a highly statistically significant improvement was observed between the studied mothers’ knowledge, QoL, needs, and coping patterns pre and post intervention program, where p<0.001, also there was a positive correlation between total self-reliance of the studied children and total mothers’ needs, quality of life and coping at pre and post intervention program (p=< 0.001). Conclusion: Implementation of coping strategies intervention had a positive effect on the improvement of mothers’ knowledge, level of needs, coping patterns and quality of life. Recommendations: Conducting frequent educational program focused on encouraging mothers to cope effectively with their children with DS.
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