以家庭为中心的移动学习赋权模式对地中海贫血患儿生活质量的影响:一项准实验研究

Akram Hemmati Pour, Dariush Rokhafrooz, Seyedeh Moloud Rasouli Ghahfarokhi, Z. Mirmoghtadaie
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引用次数: 0

摘要

背景:疾病与慢性病患者的生活质量之间存在着相互影响的关系。地中海贫血就是这样一种伴随患者一生的疾病。研究目的本研究旨在评估以家庭为中心的赋权模式对被诊断患有地中海贫血症的 6-12 岁儿童生活质量的影响。研究方法本研究采用准实验设计,涉及伊朗阿瓦士市沙法地中海贫血中心有医疗记录的 172 名患者。根据纳入标准选择参与者,随后将其分为两组:干预组和对照组各 86 人。数据收集工具包括儿童生活质量调查表(儿科生活质量量表 [Ped-SQL])和研究人员设计的调查表,用于测量家长对地中海贫血的认识和自我效能。收集到的数据使用 SPSS 软件(21 版)和 Mann-Whitney U 统计检验进行分析。结果显示结果表明,与接受教育前相比,干预组儿童在接受教育干预后的生活质量水平明显提高(P < 0.001)。具体而言,54 名(62.7%)接受干预的儿童在干预后表现出良好的生活质量水平;然而,在教育干预前后,46 名(53.4%)对照组儿童的生活质量被报告为较差。此外,该模式的实施还显著提高了家长的认知度(P < 0.001)和自我效能感(P = 0.002)。这些改善也明显高于对照组(P < 0.001)。结论:本研究的结果表明,以地中海贫血患儿家长为对象、以家庭为中心的移动学习项目可以提高和丰富这些患儿的生活质量。这种方法应被视为为这些患者提供护理的一个组成部分。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Effect of Family-Centered Empowerment Model Using Mobile Learning on the Quality of Life in Children with Thalassemia: A Quasi-Experimental Study
Background: A reciprocal relationship exists between disease and the quality of life experienced by individuals afflicted with chronic illnesses. Thalassemia is one such condition that accompanies individuals throughout their entire lives. Objectives: This study aimed to assess the impact of a family-centered empowerment model utilizing mobile learning on the quality of life of children aged 6 - 12 years diagnosed with thalassemia. Methods: This study adopted a quasi-experimental design involving 172 patients with medical records at the Shafa Thalassemia Center in Ahvaz, Iran. Participants were selected based on inclusion criteria and subsequently divided into two groups: The intervention group and the control group, each comprising 86 individuals. Data collection tools included the children’s quality of life questionnaire (Pediatric Quality of Life Inventory [Ped-SQL]) and researcher-designed questionnaires to measure parents’ awareness and self-efficacy in the field of thalassemia. The collected data were analyzed using SPSS software (version 21) and the Mann-Whitney U statistical test. Results: The results demonstrated a significant increase in the level of children’s quality of life following the educational intervention within the intervention group when compared to their pre-education status (P < 0.001). Specifically, 54 (62.7%) of the children who received the intervention exhibited a good level of quality of life after the intervention; however, both before and after the educational intervention, the quality of life of 46 (53.4%) of the children in the control group was reported as poor. Furthermore, the implementation of this model led to a significant increase in parents’ awareness (P < 0.001) and self-efficacy (P = 0.002). These improvements were also notably higher than the control group (P < 0.001). Conclusions: The findings of this study suggest that family-centered mobile learning programs targeted at parents of children with thalassemia can enhance and enrich the quality of life experienced by these children. This approach should be considered an integral part of the care provided to these patients.
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