Article

This study investigated two of the stresses experienced by parents
caring for offspring with Angelman syndrome (AS) and Prader-Willi syndrome (PWS)
in Western Australia, and identified their coping strategies. METHODS: Parents of
19 offspring with AS and PWS participated in the Family Stress and Coping
Interview which provides a stress level score, and a discussion of stressors and
coping methods associated with 24 life situations, two of which are reported. All
text was examined using directed content analysis. RESULTS: Family carers (14/19)
reported high stress associated with the initial diagnosis of AS or PWS in their
offspring; and finding time for themselves. Stressors identified included lack of
quality information about the disorder, time constraints and physical and
emotional tiredness. Parents adopted a variety of coping strategies, including
learning about the disorder, accepting the situation, seeking instrumental and
social supports and dealing with problems. CONCLUSIONS: No specific coping
strategy was associated with reduced stress. However, parents felt that accurate
and timely information during the diagnostic period helped. Parents used family
and community support although there were difficulties accessing respite care. It
is advised that government agencies, service providers, family members and peer
support associations should provide practical and emotional support to assist the
parents of offspring with AS and PWS, and indeed any form of intellectual
disability, across the lifespan. Implications for Rehabilitation Long-term caring
for offspring with AS or PWS can involve considerable stress for parents. Stress
has been associated with poorer health outcomes for parental carers. Parents need
a variety of practical and emotional supports to cope with stress, including
timely access to information.

Langue : ANGLAIS