Development and Evaluation of a Care Needs Scale for Parents of Children With Tourette Syndrome

BACKGROUND: Tourette syndrome (TS) is a chronic neurodevelopmental disorder that begins in school-age children. Although TS is not life-threatening, the tics and comorbidities can impact a child's physical and mental health, as well as interpersonal interactions. Understanding the care needs of parents of children with TS is essential for providing healthcare services that effectively support these children. The aim of the study was to develop and evaluate the psychometric properties of the care needs scale for parents of children with TS (CNS-PCTS) in Taiwan. METHODS: This study used a methodological design. The scale was developed by preliminarily identifying relevant items and dimensions through a systematic review of the literature. A pilot test with 30 participants and exploratory factor analysis (EFA) confirmed the subscales and items pertaining to the care needs of the parents. Data analysis included content validity, item analysis, internal consistency, test-retest reliability, and EFA. The Chinese version of the Pittsburgh Sleep Quality Index was adopted to assess the discriminant validity of the CNS-PCTS. RESULTS: Two hundred fifty-six parents of children with TS completed the scale. The scale-level content validity index was 0.92. The EFA revealed that the CNS-PCTS consisted of 13 items, with the factor loadings ranging from 0.656 to 0.83, and covered 3 factors: getting information about TS, assisting children in social engagement, and obtaining parenting support. The discriminant validity showed a positive correlation between the Chinese version of the Pittsburgh Sleep Quality Index and the CNS-PCTS. Cronbach's α coefficients of the subscales ranged from 0.89 to 0.94, and the intraclass correlation coefficient was 0.94. CONCLUSION: The CNS-PCTS demonstrated satisfactory psychometric properties. It helps health professionals understand parents' care needs and assess the effectiveness of interventions. Confirmatory factor analysis can be performed in future studies to provide more rigorous validity.