Janice L. Forster¹, Linda M. Gourash¹, and Marjorie H. Royle²  

Pittsburgh Partnership, Pittsburgh, PA¹ and Clay Pots Research, Lincoln Park, NJ² 

Introduction/Background:  Parents of children with PWS experience higher levels of stress than families of children with other developmental disabilities (Hodapp et al, 1997).  This stress has been attributed to the behavior problems associated with the syndrome.  In this study the authors explored which phenotypic behaviors were associated with the greatest degree of stress among families and caregivers and whether behavioral interventions targeting these behaviors resulted in less stress.  Also, the authors ascertained the nature of the coping strategies utilized by families and other caregivers to determine whether adaptive coping reduced stress.     

 Methods:  Information on levels of stress, coping strategies, severity of problem behaviors, and behavioral management techniques for individuals with PWS were collected using paper and pencil surveys.  These surveys were distributed at the start of training programs for parents or staff conducted by the first two authors in New Jersey, Utah, and Massachusetts.  Completed surveys were obtained from 41 mothers, 24 fathers, 24 other relatives, 34 direct care staff, and 13 other staff, such as behavioral consultants, nurses and supervisors.

Stress was measured using the short form of the Perceived Stress Scale (PSS-4), a 4-item scale developed by Sheldon Cohen (1988), and responses to the four items were summed to create a global stress variable.  Other variables were measured using questions written by the authors.  Items measuring problem behaviors were combined to create measures of Tantrums, Problems with Transitions, Perseverative Questioning, and Food-Related Problems.  Items measuring use of five different coping techniques (expectations of control, social support, intellectualization/information-seeking, problem-solving, and escape) were summed to create a measure of overall use of coping techniques.  Items measuring predictability of the environment were summed.

Differences in stress levels were examined by role (parent, caregiver), by age of individual with PWS, by severity of problem behaviors of individual with PWS and by reported use of coping strategies, using analysis of variance or correlations as appropriate.

Results/Discussion:  Among families, mothers reported the most stress, followed by fathers and then other relatives.  Their responses exceed national norms by nearly one standard deviation.  Among caregivers, direct care staff reported more stress than other staff whose scores were similar to national norms, but less than fathers.  Level of stress was not significantly related to the age of child, although parents with adult children living at home reported significantly more stress than those with children in out-of-home placements.  Parents who reported that their children had more frequent tantrums also reported significantly more stress.  Those who reported more food-related problems, problems with transitions, and repeated asking about food or other activities did not report significantly more stress than others.  However, because the inter-rater reliabilities were lower for these items than were those measuring tantrums, the lack of a significant relationship could have been due to inadequate measurement.  Parents and caregivers who reported using more coping techniques reported less stress (r=-.63, p<.001).  Those who reported using more behavioral management techniques to provide a predictable environment also reported less stress (r=-.372, p.<.001). 

Conclusion:  Stress is significantly higher among parents and other caregivers of people with PWS than it is in the population at large.  Use of coping strategies and behavioral management techniques to provide a predictable environment appears to buffer stress.   

Cohen S & Williamson G. (1988)  Perceived Stress in a Probability Sample of the United States.  In S. Spacapam & S. Oskamp (Eds.), The Social Psychology of Health.  Newbury Park, CA: Sage.

Hodapp RM, Dykens EM, Masino LL. (1997) Families of Children with PWS: Stress-Support and Relations to Child Characteristics. J Autism Dev Disord. Feb;27(1):11-24.

Edited: 02/09/2012