Abstract
The aim of this study was to translate, adapt, and psychometrically evaluate the Quality of Life in a Child's Chronic Disease Questionnaire (QLCCDQ) for the Swedish context. The QLCCDQ was translated into Swedish and adapted to the Swedish context. Data for psychometric testing were obtained through a survey of parents of children and adolescents (n = 627) with chronic diseases: asthma and type 1 diabetes mellitus, with a total of 173 responses (27.6%). Face and content validity of the instrument was assessed, and floor and ceiling effects were measured. Internal consistency was measured with Cronbach's alpha and an exploratory factor analysis (EFA) was conducted. The EFA gave a two-factor solution with an eigenvalue > 1 explaining 73.9% of total variance for the Swedish version. The new subscales are family life and activities (eight questions) and emotions and symptoms (four questions). Three questions concerning anxiety, worry, and guilt loaded < 0.6 and were excluded. CONCLUSION: The study concludes that the Swedish version of the QLCCDQ is a reliable and valid questionnaire. The instrument may be useful for clinical screening of families who have the greatest need for supportive interventions. However, this should be further evaluated. WHAT IS KNOWN: • A child's chronic disease influences quality of life of its family members. • Few instruments are designed to measure the impact on families. WHAT IS NEW: • The Swedish version of the Quality of Life in a Child's Chronic Disease Questionnaire has two subscales compared to the original's five. • The instrument may potentially be useful for clinical screening of families who have the greatest need for supportive interventions.