Background: Although physical, cognitive and behavioural manifestations of Williams syndrome
(WS) affect every dimension of caregivers lives, no studies on the parental experiences of caring
for a WS child have to date been carried out in Poland.
Methods: In order to identify the challenges and needs of Polish carers of WS children a survey was
conducted with 32 family caregivers who were supported by the Polish Williams Syndrome
Association.
Results: While caregivers were mostly challenged by their WS child’s behaviours, health problems
and mood swings, many parents experienced fatigue, intimacy problems with the partner and
deterioration of mental health. They were also burdened by the lack of time for themselves and
work restrictions resulting from caregiving responsibilities. Even though parents positively
assessed quality of medical care for WS children, still many expressed their dissatisfaction both
with the way the healthcare system for WS children works in Poland and complained about the
doctors’ lack of knowledge about WS, access to specialist care and lack of support from government and social institutions. Although many parents stressed positive impact of rising WS
child, more than half experienced role captivity or role overload and felt not being understood by
others. They also experienced variety of distressing emotions, including impatience, emotional
lability, helplessness, anxiety and depression.
Conclusions: Although many WS parents stressed the affirmative aspect of raising WS child this
research shows that the burden of caring for such a child goes far beyond clinical aspects and
seriously affects every aspect of parents’ lives, including their mental health, daily lives, family,
their professional and social lives. Because apart from the daily challenges related to caring for a
WS child, parents’ dealings with the healthcare system and support services represent major
problems there is a the need for a bio-psychosocial approach to WS that should include not only
WS children, but also their caregivers.