Fédération des Hôpitaux de Polyhandicap et Multihandicap, Hôpital San Salvadour, Assistance Publique Hôpitaux de Paris, Hyères, France.
EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, Marseille, France.
PLoS One. 2019 Feb 4;14(2):e0211640. doi: 10.1371/journal.pone.0211640. eCollection 2019.
Polyhandicap (PLH) is a condition of severe and complex disabilities and is defined by a combination of profound intellectual impairment and serious motor deficits. Parents of PLH individuals are chronically confronted with stressful situations. The aims of this study are i) to assess and compare the quality of life (QoL) of a large panel of parents of PLH individuals with age- and gender-matched controls and ii) to identify potential determinants of parents' QoL.
We conducted a cross-sectional study. Parents were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a specialized paediatric/neurological department. The selection criteria were age above 18 years and being the mother/father of a PLH individual. The data collected from the parents included sociodemographic, health status, and psycho-behavioural data (including QoL); additionally, the health status of the PLH individuals was collected.
The QoL scores of all dimensions were significantly lower for parents than for controls. The main factors modulating parents' QoL were financial issues, health status, and coping strategies. The PLH individuals' health status was not associated with parents' QoL.
Some QoL determinants might be amenable. These findings should help health care workers and health decision makers to implement specific and appropriate interventions.
多发性残疾（PLH）是一种严重且复杂的残疾状况，其定义是智力严重受损和严重运动障碍的结合。PLH 患者的父母长期面临压力。本研究的目的是 i）评估和比较大量 PLH 患者父母的生活质量（QoL）与年龄和性别匹配的对照组，并 ii）确定父母 QoL 的潜在决定因素。
我们进行了一项横断面研究。从 4 个专门的康复中心、9 个住宿设施和一个专门的儿科/神经科部门招募父母。入选标准为年龄大于 18 岁且为 PLH 个体的母亲/父亲。从父母那里收集的资料包括社会人口统计学、健康状况和心理行为数据（包括 QoL）；此外，还收集了 PLH 个体的健康状况。
父母的所有维度的 QoL 评分均显著低于对照组。调节父母 QoL 的主要因素是财务问题、健康状况和应对策略。PLH 个体的健康状况与父母的 QoL 无关。
一些 QoL 决定因素可能是可调节的。这些发现应该有助于医疗保健工作者和卫生决策者实施具体和适当的干预措施。
