Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey

Campbell, Jonathan D.; Whittington, Melanie D; Kim, Chong H.; VanderVeen, Gina R.; Knupp, Kelly G.; Gammaitoni, Arnold R.

doi:10.1016/j.yebeh.2018.01.003

Cited by 48 publications

(70 citation statements)

References 15 publications

(24 reference statements)

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“…heart disease, diabetes, cancer). 25 found in the fact that ten (25%) and five (13%) of patients in the 0•7 mg/kg/day and 0•2 mg/kg/day groups, respectively, had either one or no convulsive seizures for the entire 14-week study. Both the investigators and the parents/caregivers rated a significantly larger proportion of fenfluramine-treated patients as being "much improved" or "very much improved" compared with patients in the placebo group.…”

Section: Discussionmentioning

confidence: 96%

“…3 The combination of a high seizure burden and neurodevelopmental abnormalities imparts a high humanistic and economic impact on caregivers and the broader family unit. 2,25,26 Primary caregivers have reported general health scores on the EQ-5D that are equivalent to someone in the general population suffering from a major health illness (i.e. heart disease, diabetes, cancer).…”

Section: Discussionmentioning

confidence: 99%

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Fenfluramine hydrochloride for the treatment of seizures in Dravet syndrome: a randomised, double-blind, placebo-controlled trial

et al. 2019

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Section: Discussionmentioning

confidence: 96%

Section: Discussionmentioning

confidence: 99%

Fenfluramine hydrochloride for the treatment of seizures in Dravet syndrome: a randomised, double-blind, placebo-controlled trial

et al. 2019

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“…On the one hand, WSH unknown prognosis [12] and on the other hand, the di culty in dealing with seizures and their impact could be another factor contributing to this uncertainty, as is the case of caregivers of children suffering from Dravet Syndrome [71]. Sustained uncertainty over time can produce signi cant emotional distress for the caregiver [70] In the ZBI responses, 19(86.4%) of caregivers expressed no desire to leave their family member's care to somebody else.…”

Section: Caregivers' Psychosocial and Clinical Statusmentioning

confidence: 99%

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Berrocoso

Amayra

Lázaro

et al. 2020

Preprint

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Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being.Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support.Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles.

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“…This feeling of uncertainty may be associated with certain WHS characteristics. On the one hand, WSH unknown prognosis [12] and on the other hand, the difficulty in dealing with seizures and their impact could be another factor contributing to this uncertainty, as is the case of caregivers of children suffering from Dravet Syndrome [71]. Sustained uncertainty over time can produce significant emotional distress for the caregiver [70] In the ZBI responses, 19(86.4%) of caregivers expressed no desire to leave their family member's care to somebody else.…”

Section: Caregivers' Psychosocial and Clinical Statusmentioning

confidence: 99%

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Berrocoso

Amayra

Lázaro

et al. 2020

Preprint

View full text Add to dashboard Cite

Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS caregivers and analyze how these variables impact their quality of life (QoL) and well-being. Results: The sociodemographic and clinical profile of 22 Spanish caregivers of children with WHS and the characteristics of those affected have been described. Significant relationships were found between sociodemographic and psychosocial characteristics among caregivers. The impact on the parents' QoL and negative relationship with the symptomatology were assessed. The use of engagement strategies such as problem focused coping was associated with improved psychological QoL and social support. Conclusions: WHS caregivers share similarities in their profile and needs with caregivers of children with other rare diseases. Pychosocial support groups involving parents caring for children with the same disease could improve caregivers’ well-being and QoL by strengthening their social support network and using positive coping styles. Keywords: Wolf-Hirschhorn syndrome; 4p deletion; caregivers; quality of life; coping; depression; social support; spirituality.

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Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey

Abstract: Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments.

Cited by 48 publications

References 15 publications

Fenfluramine hydrochloride for the treatment of seizures in Dravet syndrome: a randomised, double-blind, placebo-controlled trial

Fenfluramine hydrochloride for the treatment of seizures in Dravet syndrome: a randomised, double-blind, placebo-controlled trial

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

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