Mendes Teresa P, Crespo Carla A, Austin Joan K
Faculdade de Psicologia e de Ciências da Educação, Universidade de Coimbra, Portugal.
Faculdade de Psicologia, Universidade de Lisboa, Portugal.
J Pediatr Psychol. 2017 Jul 1;42(6):689-699. doi: 10.1093/jpepsy/jsw105.
To examine the mediating role of stigma on the links between family cohesion and quality of life (QoL) in children with epilepsy and their parents. Participants were 192 families attending three Portuguese public hospitals. Children and parents completed self-report measures of family cohesion, stigma, QoL, and health-related QoL (HRQoL). Neurologists assessed clinical variables. Structural equation modeling within the framework of the actor-partner interdependence model was used. The final model showed a good fit to the data, explaining 43% and 35% of the QoL outcomes of children and parents, respectively. Family cohesion was positively linked to QoL outcomes, directly for children and parents, and indirectly for children only, by way of negative links with perceived stigma. At the dyadic level, parents' perceptions of family cohesion were positively associated with children's HRQoL. A routine screening of those patients experiencing poorer HRQoL should include the assessment of family relationships and stigma.
为研究耻辱感在癫痫患儿及其父母的家庭凝聚力与生活质量(QoL)之间关系中的中介作用。研究对象为192个前往三家葡萄牙公立医院就诊的家庭。儿童及其父母完成了关于家庭凝聚力、耻辱感、生活质量和健康相关生活质量(HRQoL)的自我报告测量。神经科医生评估了临床变量。采用了基于行为者-伙伴相互依赖模型框架的结构方程模型。最终模型与数据拟合良好,分别解释了儿童和父母生活质量结果的43%和35%。家庭凝聚力与生活质量结果呈正相关,对儿童和父母而言是直接相关,对儿童而言则通过与感知到的耻辱感的负相关间接相关。在二元层面上,父母对家庭凝聚力的认知与儿童的健康相关生活质量呈正相关。对那些健康相关生活质量较差的患者进行常规筛查时,应包括对家庭关系和耻辱感的评估。