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Search results for: Caregiving burden
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Ultra-rare ultra-care: The unique burden of ultra rare disease caregiving
PublicationBackground: We sought to assesses the impact of caring for children with ultra rare diseases (URDs) on familycarers and to analyse the way these experiences differ among the caregivers of children diagnosed throughprenatal or newborn screening, and those with symptom-based diagnosis.Methods: A total of 200 caregivers of 219 URDs children completed an on-line survey regarding the challengesand experiences...
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Emotional experiences of family caregivers of children with Dravet syndrome
PublicationBackground: Since the psychosocial implications of Dravet syndrome (DS) are much more serious and far-reaching than in other types of epilepsy, caring for a DS child seriously affects the entire family. This study describes the emotional experiences of family caregivers of DS children and evaluates the way caregiving affects their perceived quality of life. Methods: An anonymous, self-administered...
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Evaluating the challenges and needs of parents caring for children with Williams syndrome: A preliminary study from Poland
PublicationBackground: Although physical, cognitive and behavioural manifestations of Williams syndrome(WS) affect every dimension of caregivers lives, no studies on the parental experiences of caringfor 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 wasconducted...