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以家庭为中心的脑瘫儿童保健

Family-centred health care for children with cerebral palsy.

机构信息

Department of Pediatrics, McGill University, Montreal, QC, Canada.

IWK Health Centre, Halifax, NS, Canada.

出版信息

Dev Med Child Neurol. 2019 Jan;61(1):62-68. doi: 10.1111/dmcn.14053. Epub 2018 Oct 7.

Abstract

AIM

To identify characteristics of young children with cerebral palsy (CP), and intrinsic and extrinsic factors, that may be associated with parental perceptions regarding family-centred health care services.

METHOD

We conducted a cross-sectional study, drawing our sample from the Canadian Cerebral Palsy Registry (CCPR). Parents rated the extent of family-centred care provided by their child's health care teams using the 56-item Measures of Process of Care (MPOC) questionnaire. Environmental and CP phenotypic variables were extracted from the CCPR for group comparisons. Low and high MPOC-56 raters were also compared.

RESULTS

Valid responses were obtained from 282 families (90%). All MPOC-56 subscales were highly rated (median ≥6.0), indicating satisfaction with health care services, with the exception of the Providing General Information subscale (median 4.8, interquartile range 3.2-6.0). Parents from Nova Scotia rated all subscales significantly higher than parents from other regions. CP subtype and severity were not significantly associated with MPOC-56 subscale scores. Higher socio-economic status was associated with lower MPOC-56 subscale scores. Higher paternal educational attainment and household income were significantly associated with lower scores on the Providing General Information and Providing Specific Information about the Child subscales respectively.

INTERPRETATION

Participants affirmed the provision of family-centred services from Canadian pediatric rehabilitation centres. Sociodemographic factors were associated with parental perceptions of family-centred services.

WHAT THIS PAPER ADDS

Sociodemographic factors were associated with parental perceptions of family-centred care. Factors intrinsic to the child's cerebral palsy were not associated with parental perceptions.

摘要

目的

确定脑瘫(CP)患儿的特征以及内在和外在因素,这些因素可能与父母对以家庭为中心的医疗保健服务的看法有关。

方法

我们进行了一项横断面研究,从加拿大脑瘫登记处(CCPR)中抽取样本。父母使用 56 项护理过程措施(MPOC)问卷对其子女医疗团队提供的以家庭为中心的护理程度进行评分。从 CCPR 中提取环境和 CP 表型变量,进行组间比较。还比较了 MPOC-56 低评分者和高评分者。

结果

282 个家庭(90%)提供了有效回复。所有 MPOC-56 子量表的评分均较高(中位数≥6.0),表明对医疗服务的满意度较高,但提供一般信息子量表除外(中位数 4.8,四分位距 3.2-6.0)。来自新斯科舍省的父母对所有子量表的评分均明显高于其他地区的父母。CP 亚型和严重程度与 MPOC-56 子量表评分无显著相关性。较高的社会经济地位与 MPOC-56 子量表评分较低相关。较高的父亲教育程度和家庭收入与提供一般信息和提供关于儿童的具体信息子量表的评分较低分别显著相关。

解释

参与者肯定了加拿大儿科康复中心提供的以家庭为中心的服务。社会人口因素与父母对以家庭为中心的服务的看法有关。

本文增加内容

社会人口因素与父母对以家庭为中心的护理的看法有关。患儿的 CP 固有因素与父母的看法无关。

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