Social support and maternal caregiving burden in families of children with Angelman syndrome in China: the mediating role of self-stigma.

BACKGROUND

Rearing a child with Angelman syndrome (AS) poses significant maternal burden. This study examines whether social support–including family, friends, and significant other dimensions–is associated with maternal caregiving burden among primary caregivers of children with AS in mainland China, and whether caregivers’ self-stigma mediates this relationship.

METHODS

In the cross-sectional study, a total of 281 primary caregivers (263 mothers) of children with AS in China completed a questionnaire assessing sociodemographic factors, social support (MSPSS-12), self-stigma (ASS-22), and caregiving burden (ZBI-22). All participants were members of the Chinese Angelman Syndrome Organization. Statistical analyses, including multivariable regression and mediation models, were conducted in R 4.2.2. We employed nonparametric bootstrapping for sensitivity analyses.

RESULTS

In the composite model, lower social support was associated with higher self-stigma, which fully mediated its effect on higher caregiving burden. In the disaggregated model, lower family-support was directly and indirectly associated with higher caregiving burden, with self-stigma serving as a partial mediator. The effect of friends-support on caregiving burden was inconclusive, while significant-others-support was not significant.

CONCLUSION

This study identifies self-stigma as a significant mediator in the relationship between social support and maternal caregiving burden, with family-support emerging as the dimension most strongly associated with these outcomes. These findings highlight the potential value of interventions aimed at enhancing family-support and reducing self-stigma to improve the well-being of mothers of children with AS in China.