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Search results for: family caregivers
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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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Emotional experiences of family caregivers of children with Dravet syndrome
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Family caregivers’ experiences with healthcare services: a case of Huntington disease
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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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Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers
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The impact of the implementation of the Dutch combined Meeting Centres Support Programme for family caregivers of people with dementia in Italy, Poland and UK
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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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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...
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Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria
PublicationIntroduction: Clinical management of rare diseases often fails to acknowledge the challenges faced by caregivers.Whilst management of phenylketonuria (PKU) may not be considered as dire as other conditions, most studiesprimarily concentrate on clinical issues, dietary adherence, or the quality of life of the PKU patients, leavingcaregivers in the background. The aim of the study was to evaluate the psychosocial...