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首页> 外文期刊>Orphanet journal of rare diseases >Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life
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Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

机译：照顾患有CDKL5疾病的孩子对父母的健康和家庭生活质量的影响

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BackgroundAlthough research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy. MethodsData were sourced from the International CDKL5 Disorder Database to which 192 families with a child with a pathogenic CDKL5 mutation had provided data by January 2016. The Short Form 12 Health Survey Version 2, yielding a Physical Component Summary and a Mental Component Summary score, was used to measure primary caregiver’s wellbeing. The Beach Center Family Quality of Life Scale was used to measure family quality of life. Linear regression analyses were used to investigate relationships between child and family factors and the various subscale scores. ResultsThe median (range) age of the primary caregivers was 37.0 (24.6–63.7) years and of the children was 5.2 (0.2–34.1) years. The mean (SD) physical and mental component scores were 53.7 (8.6) and 41.9 (11.6), respectively. In mothers aged 25–54?years the mean mental but not the physical component score was lower than population norms. After covariate adjustment, caregivers with a tube-fed child had lower mean physical but higher mean mental component scores than those whose child fed orally (coefficient?=??4.80 and 6.79; p =?0.009 and 0.012, respectively). Child sleep disturbances and financial hardship were negatively associated with the mental component score. The mean (SD) Beach Center Family Quality of Life score was 4.06 (0.66) and those who had used respite services had lower scores than those who had not across the subscales. ConclusionsEmotional wellbeing was considerably impaired in this caregiver population, and was particularly associated with increased severity of child sleep problems and family financial difficulties. Family quality of life was generally rated lowest in those using respite care extensively, suggesting that these families may be more burdened by daily caregiving.
机译：背景尽管在这一领域的研究仍然很少，但已经证明抚养一个患有某些遗传性疾病的孩子会对母亲的健康和家庭生活质量产生不利影响。这项研究的目的是调查对患有CDKL5疾病的儿童的家庭的影响，该疾病是一种新发现的遗传性疾病，可导致严重的神经发育障碍和难治性癫痫。方法数据来自国际CDKL5疾病数据库，截止2016年1月，已有192个有致病性CDKL5突变的儿童家庭提供了数据。简表12健康调查第2版，产生了身体成分摘要和心理成分摘要评分，用于衡量主要护理人员的健康状况。海滩中心家庭生活质量量表用于衡量家庭生活质量。线性回归分析用于调查儿童和家庭因素与各种子量表得分之间的关​​系。结果初级护理人员的中位（范围）年龄为37.0（24.6–63.7）岁，儿童为5.2（0.2–34.1）岁。平均（SD）身体和精神成分得分分别为53.7（8.6）和41.9（11.6）。在25-54岁的母亲中，平均智力（而非身体成分）得分低于人群标准。经过协变量调整后，管饲婴儿的看护人的平均身体状况得分低于平均水平，但平均精神成分得分却高于其子女口服喂养的儿童（系数分别为？4.80和6.79; p =？0.009和0.012）。儿童睡眠障碍和经济困难与精神成分评分呈负相关。海滩中心家庭生活质量的平均（SD）得分为4.06（0.66），使用临时服务的人的得分低于未使用过该量表的人。结论在这个照料者人群中，情绪健康受到很大损害，尤其与儿童睡眠问题的严重程度和家庭经济困难有关。在广泛使用暂托服务的家庭中，家庭生活质量通常被评定为最低，这表明这些家庭可能会因日常护理而承受更大的负担。

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