Fédération des Hôpitaux de Polyhandicap et Multihandicap Hôpital San Salvadour, Assistance Publique Hôpitaux de Paris, BP 33380, 83407 Hyères cedex, France; EA 3279, Self-perceived Health Assessment Research Unit, School of Medicine, Aix Marseille Université, 27 bd Jean Moulin, Marseille 13385, France.
Hôpital de La Roche Guyon, Service de Polyhandicap Pédiatrique, Assistance Publique Hôpitaux de Paris, 1 Rue Justinien Blazy, 95780 La Roche-Guyon, France.
Arch Pediatr. 2022 May;29(4):292-299. doi: 10.1016/j.arcped.2022.01.017. Epub 2022 Mar 3.
Hospitalized children and young adults with polyhandicap (PLH) often present with behavioral and relational disorders that are mainly related to their difficulties in communicating and interacting with their environments. Educational support is rarely provided to these patients. An intensive multimodal educative program could help in reducing behavioral disorders and in improving the quality of life of healthcare workers, including nurses and auxiliary nurses.
A multicenter, randomized controlled trial compared the impact of the usual practice of an educative program (1 h a week) to a multimodal intensive educative program (5 h a week) at 12 months. Patients aged 3-25 with PLH defined by the combination of five criteria (motor deficiency, severe-to-profound mental impairment, daily life dependence, restricted mobility, onset of cerebral lesion at younger than 3 years, and at least one behavioral disorder per week [withdrawn behavior, unexplained crying, teeth grinding, self-injury, aggression, stereotypy, or merycism]) were included. The primary outcome was the evolution of the predominant behavioral disorder between study inclusion and 12 months. Healthcare workers completed questionnaires about chronic stress, coping strategies, and quality of life at study inclusion and at 12 months.
Overall, 60 patients were included. Despite a tendency toward reduced teeth grinding, withdrawn and self-injury behaviors, the intervention was not significantly effective: The median duration of continuous behavioral disorders (stereotypy, unexplained crying, withdrawn behavior, and teeth grinding) did not differ between groups. The median frequency of the discontinuous behavioral disorders (self-injury) did not differ between groups. Considering each disorder separately, there was a decrease in teeth grinding, self-injury, and autistic-like traits in the intervention group, although it did not reach statistical significance. This study also suggested decreased depersonalization feelings by healthcare workers.
Although the study did not show a significant reduction in behavioral disorders in patients with PLH, these results encourage further evaluation of educational management, particularly in regard to patients with self-injury and with withdrawn and teeth-grinding behaviors.
患有多肢体残疾（PLH）的住院儿童和青少年常伴有行为和人际关系障碍，这些障碍主要与他们与环境沟通和互动的困难有关。这些患者很少得到教育支持。强化多模式教育计划可以帮助减少行为障碍，并提高医护人员（包括护士和助理护士）的生活质量。
一项多中心、随机对照试验比较了每周 1 小时的教育计划（常规实践）与每周 5 小时的多模式强化教育计划在 12 个月时的影响。纳入年龄在 3-25 岁之间、符合以下五个标准的多肢体残疾患者（运动缺陷、严重至极重度精神障碍、日常生活依赖、活动受限、3 岁以下脑损伤、每周至少一种行为障碍[退缩行为、无法解释的哭泣、磨牙、自伤、攻击行为、刻板行为或自淫行为]）。主要结局指标为从研究纳入到 12 个月时主要行为障碍的演变。医护人员在研究纳入时和 12 个月时完成了关于慢性压力、应对策略和生活质量的问卷。
共有 60 名患者入组。尽管磨牙、退缩和自伤行为有减少的趋势，但干预并没有显著效果：两组持续行为障碍（刻板行为、无法解释的哭泣、退缩行为和磨牙）的中位数持续时间没有差异。两组间断性行为障碍（自伤）的中位数频率也没有差异。单独考虑每种障碍，干预组的磨牙、自伤和自闭症样特征减少，但没有达到统计学意义。这项研究还表明，医护人员的去人性化感觉有所减轻。
尽管该研究没有显示多肢体残疾患者的行为障碍有显著减少，但这些结果鼓励进一步评估教育管理，特别是对于有自伤行为和退缩、磨牙行为的患者。
