Living with a XXXX : development of the Craniofacial Experiences Questionnaire (CFEQ) for adolescents and their parents.

@entity2122 @entity1
OBJECTIVE: To develop a new instrument (the Craniofacial Experiences Questionnaire, CFEQ) to measure both stressors and positive aspects of living with a @entity2122 from adolescent and parent perspectives, and to examine its validity and reliability. A secondary aim was to explore experiences reported according to age, gender, and diagnosis. DESIGN: Self-report and parent report questionnaires (CFEQ, Youth Self Report [YSR], @entity1 Behavior Checklist [CBCL], Behavioral and Emotional Rating Scale [BERS]) were completed by adolescents with congenital craniofacial conditions and their parents. @entity1 : Fifty adolescents with craniofacial conditions and 55 of their parents. RESULTS: Internal reliability of the stressor and positive aspects scales was acceptable (.81 to .92) but was lower for some stressor subscales (.50-.86). Higher stressor scale scores were related to poorer adjustment (CBCL r = .55, YSR r = .37). There were no consistent differences in the stressful or positive experiences of young @entity1 with craniofacial conditions according to gender or age. There were no differences in stressors reported according to diagnosis. CONCLUSIONS: The CFEQ shows promise as a clinical and research tool for investigating the stressors and positive experiences of young @entity1 with craniofacial conditions. Consistent with the literature on chronic pediatric conditions, there were few differences in experiences of young @entity1 according to diagnosis. Furthermore, the lack of gender or age differences supports the need for clinicians to comprehensively assess the experiences of young @entity1 regardless of demographic variables.
