家庭韧性对有极重度智力和多重残疾儿童的家庭幸福感的影响。
Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities.
机构信息
Siméon T. A. Lahaije and Jorien Luijkx, Inclusive and Special Needs Education, Faculty of Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands; Aly Waninge, Research Group of Healthy Ageing, Allied Health Care and Nursing, Hanze University of Applied Sciences, Groningen, The Netherlands, and Department of Health Psychology, University Medical Center Groningen, Groningen, The Netherlands; and Annette A. J. van der Putten, Inclusive and Special Needs Education, Faculty of Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands.
出版信息
Intellect Dev Disabil. 2024 Apr 1;62(2):101-113. doi: 10.1352/1934-9556-62.2.101.
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.
患有严重智力和多重残疾的人（PIMD）有普遍的支持需求，这些需求通常由他们的家庭来管理。通过坚韧不拔和积极应对这一挑战，家庭可以保持积极的家庭生活质量（FQOL）。因此，我们旨在了解患有 PIMD 儿童的家庭如何体验他们的家庭适应力，以及这种适应力是否以及如何影响他们的 FQOL。参与者为 44 个家庭中的 64 名 PIMD 儿童的父母。总家庭适应力以及大多数子量表都获得了积极的评分，并且对 FQOL 也有显著的积极影响。这些结果更深入地了解了有 PIMD 儿童的家庭的家庭动态，这应该为这些家庭的政策和提供的服务提供信息。
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