Primary Caregivers of Children with Williams Syndrome: Posttraumatic Growth and Related Health Outcomes

摘要

Background: Current literature on caregivers of children with chronic illnesses and developmental disabilities primarily focuses on negative aspects of adjustment, with maternal stress and depression as common outcome variables (Duvdevany u26 Abboud, 2003; Shin and Crittenden, 2003). While these pediatric caregivers have been shown to struggle more than caregivers of typically developing children, the possibility of positive psychological outcomes from such an experience is only beginning to be explored (Kim, Greenberg, Seltzer u26 Krauss, 2003; Scallan, Senior u26 Reilly, 2010). One such positive outcome is the idea of Posttraumatic Growth (PTG), a construct for which a widely accepted theoretical model exists (Tedeschi u26 Calhoun, 2004). This model has yet to be empirically validated and fails to provide an exhaustive picture of PTG. The current study aims to document this phenomenon among caregivers of children with Williams, empirically evaluate a portion of the proposed theoretical model, and explore possible extensions of the model in the form of health behaviors. Methods: Participants included 104 primary caregivers of children with Williams syndrome who were recruited through the Williams Syndrome Association List serve. Caregivers completed an online survey through SurveyMonkey software that included the posttraumatic growth inventory, the deliberate rumination scale, the MOS social support survey, and the taking care of yourself questionnaire. Results: The vast majority of caregivers reported some degree of growth following a diagnosis of Williams syndrome (M =55.91, SD =22.63), consistent with reports of other pediatric caregivers (Polantinsky u26 Esprey, 2000). Further, perceived social support was found to predict posttraumatic growth, F(2,73) = 2.488, p=.029, consistent with model predictions. However, perceived social support was not predictive of an increase in deliberate rumination, F(2,72) = 0.143, p=.867, failing to support the mediational model. Finally, posttraumatic growth was not found to predict health behaviors, although those caregivers who reported more posttraumatic growth also reported being less bothered by sleep-related caregiving burdens. Conclusion: Posttraumatic growth is prevalent among Williams syndrome caregivers, indicating the need for future research in facilitating this process among pediatric caregivers and patients alike. Further, a better understanding of the cognitive constructs involved in the posttraumatic growth process is essential. This improved understanding will facilitate more accurate measurement tools for evaluating these cognitive processes along with additional clarity with regards to the theoretical model. Finally, the identification of health behaviors and health belief constructs that are impacted by posttraumatic growth would improve the depth of the theoretical model and improve overall understanding of the construct.