Rooddehghan Zahra, Nezhad Mozhgan Moghaddasi, Zakerimoghadam Masoumeh, Karimi Raoofeh
School of Nursing and Midwifery, Tehran University of Medical Sciences, Nosrat St. Tohid Sq, Tehran, 141973317, Iran.
BMC Nurs. 2023 Oct 18;22(1):391. doi: 10.1186/s12912-023-01492-6.
Performing self-care behaviors education improves the quality of life of MS patients and reduces their fatigue. This study was conducted with the aim of comparing the effect of patient-centered and family-centered self-care training programs on the quality of life and fatigue of patients with multiple sclerosis.
This is a quasi-experimental study that was conducted on the MS patients referred to the Iranian MS Association. Sampling was done by convenience method from November 2017 to September 2018. To create a random sequence in the three groups, blocks of nine were used. The control group received no intervention but the intervention groups 1 and 2 received the desired training in the form of workshop with the difference that in the intervention group 2, the patient participated in the training sessions along with one of his/her family members. The phone call follow-up was continued for 8 weeks after the last session. The questionnaire of quality of life in patients with MS (MSQOL-54), fatigue scale (FIS) and demographic information form were used for data collection. The collected data was analyzed by SPSS-16 statistical software, using descriptive (Mean and Standard deviation) and statistical statistics (paired t-test, Analysis of variance and Bonferroni).
A statistically significant difference in the mean scores of quality of life(53/16 ± 15/19 vs 56/03 ± 14/40 vs 52/48 ± 21/20)(P < 0.001) and fatigue(50/08 ± 3/28 vs 46/54 ± 28/69 vs 56/11 ± 27/93) (P < 0.001) was observed between both patient-centered and family-centered groups and the control group.
Considering the importance and role of the family and nurses in the care and education of patients with multiple sclerosis, it is possible to improve the quality of life and reduce their fatigue by providing self-care training packages to patients and their families.
开展自我护理行为教育可提高多发性硬化症（MS）患者的生活质量并减轻其疲劳感。本研究旨在比较以患者为中心和以家庭为中心的自我护理培训项目对多发性硬化症患者生活质量和疲劳感的影响。
这是一项对转诊至伊朗多发性硬化症协会的MS患者进行的准实验研究。2017年11月至2018年9月采用便利抽样法进行抽样。为在三组中创建随机序列，使用了每组9人的区组。对照组未接受干预，而干预组1和干预组2以工作坊的形式接受了所需培训，不同之处在于干预组2中患者与其一名家庭成员一起参加培训课程。最后一次课程结束后进行了为期8周的电话随访。使用MS患者生活质量问卷（MSQOL - 54）、疲劳量表（FIS）和人口统计学信息表收集数据。收集的数据通过SPSS - 16统计软件进行分析，使用描述性统计（均值和标准差）和统计检验（配对t检验、方差分析和Bonferroni检验）。
在以患者为中心和以家庭为中心的组与对照组之间，观察到生活质量平均得分（53/16 ± 15/19 vs 56/03 ± 14/40 vs 52/48 ± 21/20）（P < 0.001）和疲劳感平均得分（50/08 ± 3/28 vs 46/54 ± 28/69 vs 56/11 ± 27/93）（P < 0.001）存在统计学显著差异。
考虑到家庭和护士在多发性硬化症患者护理和教育中的重要性及作用，通过为患者及其家庭提供自我护理培训包，有可能提高生活质量并减轻他们的疲劳感。
