The Relationship Between Caring for Individuals Diagnosed with Prader-Willi Syndrome and Caregiver Stress

摘要

Background/Purpose: Chronic stress is related to numerous health risks such as causing an individual to age more rapidly than an individual with less stress (Oliveira, et al., 2010; Bauer, 2009; McEwen, 2002). Other aging problems related to chronic stress are Alzheimer's disease (Peterson et al., 2007) and premature death (Canizzo et al., 2011). Stress can lead to mental health issues such as depression (Wiegner, 2015; Hammen, 2005) and anxiety (Wiegner et al., 2015). Stress has also been linked to cardiovascular disease (Seldenrijk, 2015), asthma (Rod et al., 2012; Chen & Miller, 2007), obesity (McInnis et al., 2014), diabetes (Salpea, 2010), and gastrointestinal problems (Kennedy et al., 2014). The purpose of this research was to explore the relationship between caregiver stress and two primary characteristics of individuals diagnosed with Prader-Will syndrome (PWS): hyperphagia and explosive behaviors. Other variables being explored relate to variables not directly to the individual being cared for: coping strategies of the caregiver, perceived social supports, and resources/respites.;Methods: For this descriptive, cross-sectional study, an online survey was distributed by the Prader-Willi Syndrome Association (USA) to all its members between December, 2016 and March, 2017. Inclusion criteria included: participant being at least 18 years of age and not receiving pay for caring for the individual; the person being cared for being at least four years of age and living at home. A 128-item scale survey was used to assess all independent variables and their relationship with stress.;Results: A total of 278 participants completed the survey, the majority being mothers (81.3%) and Caucasian (84.2%). Most of those being cared for were female (56.1%) with the individuals being cared for having a mean age of 17.56 years of age. Cronbach's beta ranged from low (beta = 0.493, Self-distraction coping strategy) to high (alpha = 0.935, Social Provisions Scale). Multiple regression analysis found significant beta coefficients with three variables. The variable having the highest variance with stress was the Coping Strategy, Self-Blame (beta = 0.257.) Social Provisions Scale (Social Supports) was the only variable which had a significant negative score (-0.182). The other variable having a significant variance was Venting (beta = 0.183). The beta coefficient variance for all independent variables (R2), including control variables was (.421). The mean score for stress was 15.96, qualifying as mild stress, with 50.7% of the participants being in the normal range.;Conclusion: The results of this study suggest that perceived social supports and two emotion-focused coping strategies have significant relationships with stress for this population. Furthermore, the variables: hyperphagia, crisis cycle of maladaptive behaviors, resources/respites, four emotion-focused and all problem-focused coping strategies had no significant relationships with stress. Findings would also suggest the participants in this study do not have the excessive stress found in other studies. Future studies using longitudinal approaches could prove beneficial to this population, as well as research investigating mediating effects of the variables identified in this study.