EA 3279, CEReSS - Research Centre on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Hôpital San Salvadour, Assistance Publique Hôpitaux de Paris, Hyères, France.
Front Public Health. 2024 Oct 18;12:1427289. doi: 10.3389/fpubh.2024.1427289. eCollection 2024.
Profound intellectual multiple disabilities or polyhandicap (PLH) is defined as a combination of profound mental retardation and serious motor deficits resulting in extreme dependence. Support for these patients is multidisciplinary, complex, and time-consuming. Thus, institutional health care workers (HCWs) face specific working conditions: frequent physical tasks, distressed families, and restricted feedback.
We aimed to identify determinants of quality of life (QoL) of HCWs and to study longitudinal evolution.
The study used data from the French cohort EVAL-PLH. The participants were institutional HCWs of persons with PLH (age ≥ 3 years at the time of inclusion; age at onset of cerebral lesion <3 years old). Two populations were used: (1) cross sectional study: the sample 1 includes the HCWs assessed at T2 (2020-2021); (2) longitudinal study: the sample 2 includes the HCWs assessed at both T1 (2015-2016) and T2 (2020-2021). The data collected included: sociodemographics, health status, professional variables, and psycho-comportemental aspects. QoL was assessed using WHOQOL-BREF which provides 4 scores.
In comparison with French norms, the physical and social scores of QoL were significantly lower while the psychological score was significantly higher for (i) the 223 HCWs (participation rate 62%) assessed at T2 and (ii) the 61 HCWs assessed at T1 and T2. The main factors modulating QoL were age, marital status, self-perceived financial difficulties, personal chronic disease, anxiety-mood disorders, nature of coping strategies, and burnout.
This study confirms the mixed (negative and positive) impact of caring persons with PLH on the institutional HCWs' QOL. Main determinants of the HCW's QOL were: older age, single status, perceived financial difficulties, altered health status, burn out and coping strategies.: NCT02400528.
严重智力多重残疾或多残疾（PLH）定义为严重精神发育迟缓和严重运动障碍的组合，导致极度依赖。这些患者的支持是多学科的、复杂的和耗时的。因此，机构内的卫生保健工作者（HCWs）面临着特殊的工作条件：频繁的体力劳动、苦恼的家庭和有限的反馈。
我们旨在确定卫生保健工作者生活质量（QoL）的决定因素，并研究其纵向演变。
该研究使用了法国队列 EVAL-PLH 的数据。参与者是多残疾（PLH）患者的机构 HCWs（纳入时年龄≥3 岁；脑损伤发病年龄<3 岁）。使用了两个群体：（1）横断面研究：样本 1 包括在 T2 时评估的 HCWs（2020-2021 年）；（2）纵向研究：样本 2 包括在 T1（2015-2016 年）和 T2（2020-2021 年）时都评估的 HCWs。收集的数据包括：社会人口统计学、健康状况、职业变量和心理行为方面。使用 WHOQOL-BREF 评估 QoL，该量表提供了 4 个分数。
与法国常模相比，（i）在 T2 时评估的 223 名 HCWs（参与率 62%）和（ii）在 T1 和 T2 时评估的 61 名 HCWs，其 QoL 的身体和社会评分显著较低，而心理评分显著较高。调节 QoL 的主要因素是年龄、婚姻状况、自我感知的经济困难、个人慢性病、焦虑-情绪障碍、应对策略的性质和倦怠。
这项研究证实了照顾 PLH 患者对机构 HCWs 的 QoL 产生了复杂的（消极和积极）影响。HCW 生活质量的主要决定因素是：年龄较大、单身、经济困难、健康状况改变、倦怠和应对策略。
