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Search results for: caregiver 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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Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers
PublicationWhile Polish studies focus on the symptoms, causes and treatment of people suffering from Dravet syndrome (DS), much less is known about the situation of the family caregivers of DS children. This study was designed to explore the experiences, daily challenges and needs related to caring for DS children. An anonymous self-administered online questionnaire was developed. Thesurvey was completed by 75 family caregivers affiliated...
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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...