Key points are not available for this paper at this time.
Background Raising a child with Prader-Willi syndrome (PWS) is associated with substantial caregiving challenges for parents. Elevated levels of caregiving burden and loneliness have been documented in this population. However, the relationship between loneliness and caregiving burden, as well as the factors that may shape this association, remains insufficiently understood. Objectives This study aimed to examine the association between loneliness and parental caregiving burden, particularly regarding the moderating role of family functioning and family SES. Methods A cross-sectional survey was conducted among 1,105 children with PWS and their parent caregivers through the Prader-Willi Syndrome Care and Support Center from July to October, 2023. Participants completed a questionnaire assessing sociodemographic factors, self-rated health (EQ-5D-5L), caregiving burden (ZBI-22), loneliness (De Jong Gierveld-11), and family function (Apgar-5). Descriptive statistics and hierarchical multiple linear regression analyses were conducted in R 4.2.2. We employed a nonparametric bootstrapping for sensitivity analysis. Results Results indicated: (1) Loneliness was positively associated with caregiving burden. (2) Family SES was negatively associated with caregiving burden. (3) Family functioning negatively moderates the association between loneliness and caregiving burden. (4) Family SES positively moderates the association between loneliness and caregiving burden. Conclusion This study identifies that loneliness was positively associated with caregiving burden among parents of children with PWS in China. Family functioning buffers the effect, whereas higher SES may amplify it. These findings highlight the importance of promoting family cohesion, financial stability, PWS-specific social welfare, and reducing parental loneliness.
Dayimu et al. (Fri,) studied this question.