Translation and Validation of the Japanese Version of the University of Washington Caregiver Benefit Scale and the Perception of Benefit-Finding by Caregivers of Children With Spina Bifida and Related Factors: Mixed Methods Research and Comparative Analysis

Background Spina bifida (SB) is a congenital condition that requires long-term multidisciplinary medical collaboration for treatment. Previous research has primarily focused on the negative impacts experienced by caregivers of children with SB. However, with the development of positive psychology, the concept of benefit-finding (BF) has been explored in the context of caregivers of children with various chronic illnesses. Nonetheless, in Japan, BF among caregivers of children with SB remains unexplored, and no appropriate measurement tool has been developed for this population. Objective This study aimed to translate and validate the Japanese version of the University of Washington Caregiver Benefit Scale (UW-CBS) based on caregivers of children with SB and to examine the characteristics of BF in these caregivers. A comparative analysis with caregivers of able-bodied children was also conducted to elucidate the parenting stress and social support experienced by families rearing children with SB. Methods This 2-part study was carried out from January 2024 to December 2024. In Study 1, the UW-CBS was translated, then face validity was examined through a pretest (n=6) using cognitive interviews. In the main survey, construct validity, known-groups validity, and retest reliability were evaluated (n=60). In Study 2, the characteristics of BF of caregivers of children with SB were analyzed using data from the main survey. Parents of able-bodied children (n=66) completed the same questionnaire. Parenting stress, BF, and social support scores were then compared between caregivers of children with SB and the parents of able-bodied children. Results In Study 1, the reliability and validity of the UW-CBS were examined. Internal consistency was high (Cronbach α =0.92), while test-retest reliability had an intraclass correlation coefficient of 0.62 ( P =.051). In Study 2, caregivers who had a partner ( P =.009) and those who were rearing both a child with SB and a sibling reported higher levels of BF ( P =.02). Compared with families rearing able-bodied children, no significant differences emerged in BF or parenting stress, but the level of social support was significantly higher in families of children with SB ( P =.005). Conclusions This study demonstrated the reliability and validity of the Japanese version of the UW-CBS in families rearing children with SB. For caregivers of children with SB, assistance from other family members or shared childcare responsibilities may facilitate positive adjustment. Moreover, the higher level of social support received by caregivers of children with SB may mitigate their parenting stress and foster their perception of benefits.