Abstract：
Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.
摘要：
患有严重智力和多重残疾（PIMD）的人有普遍的支持需求，通常由他们的家人管理。通过有弹性和积极适应这一挑战，家庭可以保持积极的家庭生活质量（FQOL）。因此，我们旨在了解有PIMD儿童的家庭如何体验他们的家庭韧性，以及它是否以及如何影响他们的FQOL。参与者是来自44个家庭的PIMD患者的64位父母。家庭总复原力，以及大多数分量表获得正分数，对FQOL也有显著的正向影响。这些结果为有PIMD儿童的家庭动态提供了更多的见解，这应该为政策提供信息，并为这些家庭提供服务。
