Meyer Sonya, Rosenblum Sara
Sonya Meyer, MSc, is Doctoral Student, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, University of Haifa, Mount Carmel, Haifa, Israel;
Sara Rosenblum, PhD, is Associate Professor and Head, Laboratory of Complex Human Activity and Participation, Department of Occupational Therapy, Faculty of Social Welfare & Health Sciences, University of Haifa, Mount Carmel, Haifa, Israel.
Am J Occup Ther. 2016 Nov/Dec;70(6):7006220010p1-7006220010p8. doi: 10.5014/ajot.2016.020594.
We compared health-related quality-of-life (HRQOL) perceptions of children with celiac disease (CD) with those of their parents to determine whether their leisure participation differs from that of children without CD and whether relationships exist between leisure participation and HRQOL.
Children with CD and their parents completed a disease-specific HRQOL self-report questionnaire, the Celiac Disease DUX. These children and matched controls without CD completed the Children's Leisure Assessment Scale (CLASS).
Parents perceived HRQOL significantly more negatively than did children. No significant group differences were found in leisure participation. However, specific CLASS food-related activities and HRQOL significantly correlated.
Hearing the child's voice in addition to the parents' is important in determining the HRQOL of children with a chronic condition. Findings contribute to understanding of CD in the context of participation and well-being and can lead to development of occupational performance-based assessments and interventions for children with CD.
我们比较了患有乳糜泻（CD）的儿童与其父母对健康相关生活质量（HRQOL）的认知，以确定他们的休闲参与情况是否与无CD的儿童不同，以及休闲参与和HRQOL之间是否存在关联。
患有CD的儿童及其父母完成了一份针对该疾病的HRQOL自我报告问卷，即乳糜泻DUX问卷。这些儿童以及匹配的无CD对照组完成了儿童休闲评估量表（CLASS）。
父母对HRQOL的认知明显比儿童更消极。在休闲参与方面未发现显著的组间差异。然而，CLASS中与食物相关的特定活动和HRQOL显著相关。
在确定慢性病患儿的HRQOL时，除了听取父母的意见外，听取孩子的声音也很重要。研究结果有助于在参与和幸福的背景下理解CD，并可促使为患有CD的儿童开发基于职业表现的评估和干预措施。
