Garip Yesim, Ozel Sumru, Tuncer Ozgul Bozkurt, Kilinc Gizem, Seckin Feryal, Arasil Tansu
a Department of Physical Medicine and Rehabilitation , Pinar Physical Therapy and Rehabilitation Center , Ankara , Turkey.
b Department of Physical Medicine and Rehabilitation , Ankara Physical Therapy and Rehabilitation Training and Research Hospital , Ankara , Turkey.
Disabil Rehabil. 2017 Apr;39(8):757-762. doi: 10.3109/09638288.2016.1161837. Epub 2016 Mar 25.
To evaluate fatigue in the mothers of children with cerebral palsy (CP), and to determine its associations with clinical parameters of CP, depression and quality of life (QoL).
Ninety children (50 girls and 40 boys) with spastic CP and their mothers were included. Control group comprised mothers of healthy children. Gross motor function classification system (GMFCS) was used for determining functional status. Spasticity was evaluated by using modified Ashworth scale. Fatigue symptom inventory (FSI) was used for assessing maternal fatigue, Nottingham health profile (NHP) for maternal QoL, and Beck Depression Scale (BDS) for maternal depression.
Mothers of children with CP scored significantly higher in all FSI subgroups (intensity of fatigue, duration of fatigue and interference with QoL), all NHP subgroups and BDS (p < 0.05) when compared with controls. FSI was found to be correlated with BDS and all subgroups of NHP (p < 0.01). No association was found between FSI and clinical parameters of children with CP including age, gender, type of CP, tonus and functional impairment (p > 0.05).
Our findings indicate that fatigue levels of mothers with CP children are higher than those with healthy children and associated with depression and deterioration in QoL in terms of physical, social and emotional functioning. This should be considered while designing a family centred rehabilitation programme for children with CP. Implications for Rehabilitation Caring for a child with cerebral palsy has psychological, social and financial impacts on familiesand is associated with increased levels of fatigue among mothers. The capacity of current programs and services needs to be strengthened to accommodate theneeds of children with CP and their mothers in order to reduce fatigue of mothers. New programs need to be developed to provide psychosocial support for the mothers andto reduce their fatigue as they continue to care for their children. Provision of assistive technology devices (particularly suitable wheelchairs) will be useful inreduction of fatigue levels of mothers.
评估脑瘫（CP）患儿母亲的疲劳状况，并确定其与CP临床参数、抑郁及生活质量（QoL）的相关性。
纳入90例痉挛型CP患儿（50例女孩，40例男孩）及其母亲。对照组为健康儿童的母亲。采用粗大运动功能分类系统（GMFCS）确定功能状态。使用改良Ashworth量表评估痉挛程度。采用疲劳症状量表（FSI）评估母亲的疲劳状况，采用诺丁汉健康量表（NHP）评估母亲的生活质量，采用贝克抑郁量表（BDS）评估母亲的抑郁情况。
与对照组相比，CP患儿母亲在FSI所有亚组（疲劳强度、疲劳持续时间及对生活质量的干扰）、NHP所有亚组及BDS中的得分均显著更高（p < 0.05）。发现FSI与BDS及NHP所有亚组相关（p < 0.01）。未发现FSI与CP患儿的临床参数（包括年龄、性别、CP类型、肌张力及功能损害）之间存在关联（p > 0.05）。
我们的研究结果表明，CP患儿母亲的疲劳水平高于健康儿童的母亲，且在身体、社会和情感功能方面与抑郁及生活质量下降相关。在为CP患儿设计以家庭为中心的康复计划时应考虑到这一点。
康复启示
照顾脑瘫患儿会对家庭产生心理、社会和经济影响，并与母亲疲劳水平升高相关。需要加强现有项目和服务的能力，以满足CP患儿及其母亲的需求，从而减轻母亲的疲劳。需要制定新的项目，为母亲提供心理社会支持，并在她们继续照顾孩子时减轻其疲劳。提供辅助技术设备（特别是合适的轮椅）将有助于降低母亲的疲劳水平。
