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Janice L. Forster1,
Linda M. Gourash1,
and Marjorie H. Royle2
Pittsburgh Partnership, Pittsburgh, PA1 and Clay Pots Research,
Lincoln Park, NJ2
Introduction/Background: Among individuals with PWS, maladaptive and
compulsive behaviors appear to display an age-related increase from infancy
through young adulthood, but decrease as these individuals enter their 30’s,
sometimes even approaching preschool levels (Dykens, 2004). A pilot study to
develop measurements of food-related and transition-related problems for use in
evaluating the FOOD SECURITY method of managing people with PWS provided an
opportunity to investigate whether this age-related pattern also can be found in
these specific PWS-related behaviors.
Methods:
The frequency of occurrence in the previous month of a series of 17 food-related
and 7 transition-related behavioral problems was collected from parents and
other caregivers of 57 children and adults with PWS ranging in age from birth to
59 years of age. Paper and pencil surveys
designed by the authors for this study were distributed at the start of training
programs for parents or staff conducted by the first two authors in New Jersey
and Utah. When two parents or other relatives or parents and staff completed
rating forms, the results were averaged for each item. Scores on individual
items were combined to create measures of Tantrums, Problems with Transitions,
Perseverative Questioning, and Food-Related Problems.
Two approaches were
taken in order to examine changes in these specific problem behaviors across the
life-cycle. In parallel with the Dykens study, individuals were divided into 4
groups by age, 3 to 9 years, 10 to 19 years, 20 to 29 years, and 30 years and
above. An analysis of variance was used to examine differences in mean
frequencies for these groups. In addition, individuals with PWS were divided
into 2-year age categories from birth to age 20 years and 5-year age categories
after that. The occurrence and severity of the problem behaviors were graphed
according to age group.
Results/Discussion:
Of the 17 individual items measuring Food-Related Problems, 10 items showed the
age-related pattern described by Dykens; differences among age groups reached
statistical significance for 8 of them. The composite variable of Food-Related
Problems also showed the pattern. Several behaviors (acquiring extra food at
home, barters items/services for food, uses own money to buy food, and eats
atypical food) were greatest among the oldest group, while foraging at night was
similar for young and older adults. The age-related pattern was found for the
composite Tantrums variable. Of the 7 items measuring Problems During
Transitions, none showed the expected pattern. The composite Transitions
variable peaked in the10-19 year age group. Elevations in the composite
variable measuring Perseverative Questioning did not differ significantly by
age. Overall, when items were graphed according to the 2-year age groupings,
individual differences were large within age groups.
Because the study was
cross-sectional, one cannot conclude that problem behaviors decrease with age.
Rather, the older adults who do not now exhibit the behaviors may not have done
so as children, and young children whose parents have the benefit of more
knowledge about effective management techniques may not develop some of the
problem behaviors. However, one option on the scale permitted parents to say
that the child once had, but no longer exhibited, a behavior. This category was
almost entirely used by parents of adult children, suggesting that, in fact,
some specific problem behaviors had decreased with age. The potentially
important role of environmental change (moving out of home care) could not be
independently evaluated.
Conclusion:
While the incidence and severity of many Food-Related Problems appear to
decrease in adulthood, the incidence and severity of other behaviors appear to
peak earlier (Problems During Transitions) or do not decrease with age (Perseverative
Questioning).
Edited:
02/09/2012
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