Stressful, Hopeful, and Strong Ecological Connections and the Well-Being of Parents of Adolescents with ASD

Thursday, May 15, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
J. Kuhn1, K. Ehlers1 and L. E. Smith2, (1)University of Wisconsin-Madison, Madison, WI, (2)Waisman Center, University of Wisconsin-Madison, Madison, WI

Parents of children with autism spectrum disorder (ASD) experience poorer psychological well-being than parents with children without disabilities or parents other children with disabilities, including Down syndrome, cerebral palsy, and intellectual disability (Hayes & Watson, 2013; Abbeduto et al., 2004; Serrata, 2012).  High levels of stress for families of children with ASD have been observed across the life course, with the adolescent period being a time of notably high stress. Much of the past research on the factors associated with stress and well-being has focused on child-related factors such as behavior problems and adaptive functioning. Less is known, however, about how environmental and system factors (e.g., interactions with formal systems and social networks) may impact family members’ psychological well-being during the transition to adulthood.


The goal of the present study was to determine the extent to which different types of connections between ecological system levels (e.g., Bronfenbrenner, 1979), relate to the psychological well-being of parents of adolescents with ASD. Specifically, using an ecomap tool designed for use in clinical settings, we examined the impact of stressful, hopeful, and strong connections on parental negative affect, burden, and perceived stress.


Participants (n = 25) were parents of adolescents (14-17 years of age) with ASD drawn from a larger, ongoing study of the Transitioning Together intervention, an 8-week education and support program for transition-aged youth with ASD and their families. Prior to beginning the intervention, parents completed ecomaps (i.e., a visual map reflecting the social ecology of the family). On the ecomap, lines were drawn to represent the type of connections (i.e., strong, stressful, hopeful) that participants described between themselves and various systems in their lives (e.g., child’s school, medical providers). Ecomap responses were scored to provide the number of stressful, strong, and hopeful connections across and within ecological systems layers. Psychological well-being was measured with self-report measures including the Positive and Negative Affect Schedule (Watson et al., 1988), the Zarit Burden Interview (Zarit et al., 1980), and the Perceived Stress Scale (Cohen & Williamson, 1988). Associations among ecomap variables and measures of psychological well-being were examined.


We note that data collection is ongoing, with an anticipated final sample size of 50. Preliminary results indicated that a higher number of strong connections within the microsystem was associated with lower levels of parental perceived stress, r=-.56, p<.05. Stressful connections at each system level were significantly associated with higher levels of parental negative affect. Finally, a higher number of hopeful connections, specifically within the microsystem, was associated with higher levels of parental burden, r=.45, p< .10.


Findings highlight the clinical and research utility of using an ecomap in this population as it can quickly assess multiple sources of stress and identify areas for resources and referrals. Increasing and enhancing family connections to microsystem level supports and services, such as respite, school that the child attends, etc., may be valuable target for intervention programming.

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