Hôpital San Salvadour, Assistance Publique - Hôpitaux de Paris, Paris, Île-de-France, France
EA 3279, Self-perceived Health Assessment Research Unit, Aix-Marseille Universite, Marseille, France.
BMJ Open. 2020 Feb 2;10(1):e032257. doi: 10.1136/bmjopen-2019-032257.
Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden.
Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France).
PLH children were recruited from a specialised paediatric/neurological department.
The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin.
From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models).
Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20 to 81±12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden.
Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions.
NCT02400528.
多发性残疾（PLH）是一种严重的疾病，表现为智力严重受损和严重运动障碍的组合，具有复杂的残疾。在法国，大多数 PLH 患者的护理由专门的康复中心或住宿机构管理，但有些 PLH 患者在家中接受护理。本研究的目的是评估 PLH 患者的非正式照顾者的自我感知负担，并确定这种负担的潜在决定因素。
横断面研究（巴黎 Trousseau 医院神经儿科部门）。
从专门的儿科/神经科部门招募 PLH 儿童。
照顾者的选择标准为年龄在 18 岁以上，且为 PLH 个体的近亲。
从 2015 年 3 月至 2016 年 12 月，从照顾者那里收集了数据，包括社会人口统计学数据、健康状况、心理行为数据（生活质量、情绪障碍和应对方式）和自我感知负担。此外，还收集了 PLH 个体的健康状况。测试了负担评分与潜在决定因素之间的关系（相关系数、曼-惠特尼检验、广义估计方程模型）。
共有 84 名儿童符合条件；77 个家庭返回了他们的问卷。PLH 儿童的非正式照顾者经历了高度的感知负担（评分范围为 55±20 至 81±12）。80%的人每天需要照顾超过 5 小时，51%的人需要在夜间起床两次以上。与照顾者负担相关的主要因素是年龄、经济问题、健康状况、日常护理和应对策略。患者的健康状况与照顾者的负担无关。
一些照顾者负担的决定因素可能是可以改变的。这些发现应该有助于医疗保健工作者和卫生决策制定者实施具体和适当的干预措施。
NCT02400528。
