Department of Psychiatry, Institute of Behavioral Science in Medicine, Severance Hospital, Yonsei University College of Medicine, 135-720 Seoul, Korea.
Pediatr Neurol. 2010 Apr;42(4):271-6. doi: 10.1016/j.pediatrneurol.2009.11.012.
A child's health inevitably affects the parents' psychologic health and quality of life, especially for mothers of disabled children. Caregiver burden and health-related quality of life were investigated in mothers of children with mitochondrial disease, compared with mothers of children with intractable epilepsy. Mothers of children with mitochondrial disease (n = 33) and intractable epilepsy (n = 32) were recruited. The Zarit Burden Inventory, the Medical Outcomes Short Form 36, short version of the World Health Organization Quality of Life, Beck Depression Inventory, and Beck Anxiety Inventory were administered to all participants. Except for duration of illness and number of previous hospitalizations, there was no significant difference in recorded variables between the two groups. Mothers of children with mitochondrial disease had significantly higher caregiver burden and poorer health-related quality of life, particularly related to role limitations, vitality, and mental health. They also had greater levels of depression and anxiety. After adjustment for all covariates, caregiver anxiety was the most important factor affecting overall caregiver burden. With mitochondrial disease, the possibility of maternal inheritance and scarcity of information about the disease might increase anxiety and thus eventually also the caregiver burden. Accurate information about rare diseases provided to caregivers could be helpful in reducing their anxiety.
儿童的健康状况不可避免地会影响父母的心理健康和生活质量，尤其是对于残疾儿童的母亲。本研究比较了线粒体病患儿的母亲和难治性癫痫患儿的母亲的照护者负担和与健康相关的生活质量。共招募了 33 名线粒体病患儿的母亲和 32 名难治性癫痫患儿的母亲。对所有参与者进行了 Zarit 负担量表、健康调查简表 36 项、世界卫生组织生活质量简表、贝克抑郁量表和贝克焦虑量表评估。除了疾病持续时间和之前的住院次数外，两组记录的变量没有显著差异。线粒体病患儿的母亲的照护者负担显著更高，与角色限制、活力和心理健康相关的健康相关生活质量更差。她们的抑郁和焦虑水平也更高。在调整所有协变量后，照护者焦虑是影响整体照护者负担的最重要因素。由于线粒体疾病存在母系遗传的可能性以及疾病信息匮乏，这可能会增加焦虑，进而最终增加照护者的负担。向照护者提供有关罕见疾病的准确信息可能有助于减轻他们的焦虑。
