JMIR Publications

ABSTRACT

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 develop 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 study was divided into two parts. Study 1 translated and validated the reliability, validity, and practicality of the UW-CBS through a pretest and main survey. 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 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:

The pretest involved 6 caregivers of children with SB, and the main survey included 60, with a retest for 7. A total of 67 able-bodied children's caregivers participated. In Study 1, the pretest demonstrated face validity, and the UW-CBS took approximately 2 minutes to complete. Retest reliability was assessed using the intraclass correlation coefficient (0.62) and Cronbach's α coefficient (0.92). The correlation between the UW-CBS and resilience was r=0.30. In Study 2, caregivers who had a partner (P<0.01) and those who were rearing both a child with SB and a sibling reported higher levels of BF (P=0.02). 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<0.01).

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.