ArticleEpilepsy & behavior reports2023
The psychosocial impact of caring for children with Dravet Syndrome.
Article in Epilepsy & behavior reports, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 11 citations in OpenAlex.
- Mental health impacts experienced by caregivers of people with Dravet syndrome: A systematic literature review.Epilepsia · 2026Pooled it
- A qualitative study on treatment decision-making experiences of primary caregivers of children with difficult-to-treat nephrotic syndrome.International urology and nephrology · 2026Article
- Labour of Love: A Sequential Exploratory Mixed-Methods Study on the Impact of Caring for a Child With Dravet Syndrome.Journal of intellectual disability research : JIDR · 2026Article
- Article
- Validation of the Zarit burden interview for Polish caregivers of individuals with rare diseases: a multidimensional approach to assessing caregiver burden.BMC psychology · 2025Article
- Assessing the impact of Dravet syndrome on caregivers' quality of life and perceived burden in Poland.BMC psychology · 2025Article
- Rare disease, common struggles: quality of life, caregiver burden and financial wellbeing of family caregivers in Poland.Scientific reports · 2025Article
- Organizational and behavioral models in the management of patients with developmental and epileptic encephalopathy, Lennox-Gastaut syndrome and Dravet syndrome in Italy: a focus on the transition from pediatric to adult care.Frontiers in health services · 2025Article
- Assessment of aggressive behavior in Dravet syndrome: a critical look.Frontiers in integrative neuroscience · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This study examined the psychosocial impact on parents of children affected by Dravet Syndrome (DS), a rare drug-resistant developmental encephalopathic epileptic syndrome which affects children at an early age and that involves severe cognitive, behavioral, and motor impairments. DS has a major negative impact on caregivers, mainly on their physical and mental health, and on their social relationships and economic resources. Similarly, it has been suggested that the quality of life of caregivers and children with DS is lower compared to the general population, especially because of the severe and frequent seizures suffered by the child, leaving caregivers with heavy burdens. The main aim of the current study was to assess in detail the psychosocial impact that having a child with DS represents for their parents or caregivers. To this end, a standardized assessment tool was used, and the results were compared to those of a control group. The results highlighted critical differences in most of the areas explored, revealing a marked difference between parents caring of children with DS and parents of normotypically developing children in the psychosocial wellness. This study provides important qualitative data to help us understand and identify the complexity of DS.
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Registered trials
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