Hagglund K J, Pressly T A, Clay D L
Dept of Physical Medicine and Rehabilitation, University of Missouri at Columbia, USA.
J La State Med Soc. 1995 Jul;147(7):313-20.
Children with juvenile rheumatic disease (JRD) and their families face numerous challenges associated with disease symptomatology and treatment. Although many families cope well with these challenges, many are at risk for poor outcome. Children with JRD may have emotional, behavioral, and academic difficulties. Their parents also may have emotional distress, as well as marital conflict and reduced social activity. Identified risk factors for poor outcome include compromised family coping, poor adherence to treatment, and unmet academic needs. These risk factors are reviewed and an initial assessment of the effect of a family retreat on family coping is described. Twenty-seven families completed a coping questionnaire first at a family retreat and again 3 months later. Improvements were observed in reported ability to communicate about JRD, knowledge of arthritis, certainty of disease course, and ability to overcome difficulties related to JRD. Family retreats hold the potential to significantly enhance children's and caregivers' adaptation to JRD.
患有青少年风湿性疾病（JRD）的儿童及其家庭面临着与疾病症状和治疗相关的诸多挑战。尽管许多家庭能很好地应对这些挑战，但仍有许多家庭面临不良预后的风险。患有JRD的儿童可能存在情绪、行为和学业方面的困难。他们的父母也可能有情绪困扰，以及婚姻冲突和社交活动减少的情况。已确定的不良预后风险因素包括家庭应对能力受损、治疗依从性差以及学业需求未得到满足。本文对这些风险因素进行了综述，并描述了对一次家庭静修对家庭应对效果的初步评估。27个家庭首先在一次家庭静修时完成了一份应对问卷，并在3个月后再次填写。在报告的关于JRD的沟通能力、关节炎知识、疾病进程的确定性以及克服与JRD相关困难的能力方面均观察到了改善。家庭静修有可能显著增强儿童及其照料者对JRD的适应能力。
