Measuring the impact of epilepsy on families

Dawes, Alex; Attipoe, Selasi; Mittlesteadt, Jackson; Glynn, Peter; Rust, Steve; Debs, Andrea; Patel, Anup D.

doi:10.1016/j.yebeh.2020.107254

Cited by 8 publications

(4 citation statements)

References 28 publications

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“…Previous studies showed mixed results in analyzing the impact of epilepsy on children due to their age, understanding of the disease, and involvement. 10 Due to the focus of the study on the FB, we did not examine the situation of the siblings. Thus, to measure the changes of the impact on siblings more sensitive instruments are required.…”

Section: Discussionmentioning

confidence: 99%

Family Burden and Epilepsy Surgery in Children with Drug-Resistant Epilepsy

et al. 2023

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Introduction Family burden (FB) in pediatric patients with drug-resistant epilepsy (DRE) is significantly higher than that in children with non-DRE. Epilepsy surgery is an established approach to treat DRE, and this study examines the impact of pediatric epilepsy surgery on FB. Methods We retrospectively analyzed data of families and pediatric patients with focal structural DRE treated with epilepsy surgery at our epilepsy center from April 2018 to November 2021. We examined the relationship between cognitive, behavioral, and epilepsy-specific data and the FB measured with the German version of the Impact on Family Scale before and after epilepsy surgery. Results The study cohort included 31 children with DRE at a mean age of 9 years at surgery (range = 0–16) and a mean epilepsy duration of 3 years (range = 0–14). Cognitive impairment correlated with FB in children with DRE prior to surgery. At the last assessment, 14.5 months (mean, range = 6–24) after epilepsy surgery, 87.2% of patients were seizure-free, FB values had decreased by 75.0%, and behavioral problems had decreased by 85,7%. Cognitive functions remained stable following epilepsy surgery. Conclusion In children with DRE, epilepsy surgery reduces FB. Given the considerable impact of families on the development and wellbeing of their children, the impact of epilepsy surgery should be communicated to affected families.

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Section: Discussionmentioning

confidence: 99%

Family Burden and Epilepsy Surgery in Children with Drug-Resistant Epilepsy

et al. 2023

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“…The indirect problems arising from the high frequency of developmental and epileptic encephalopathies (DEE) have a major psychosocial impact on the whole family structure 11 – 13 . The presence of a rare epileptic condition in a child can have a direct and indirect impact on the parents’ quality of life that varies according to different factors such as the severity of the condition, the complexity or restrictions of the symptoms, the coping skills, the social support, and the resources available to cope with its demands 14 .…”

Section: Background and Summarymentioning

confidence: 99%

Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies

Salom

Aras

Piñero³

et al. 2023

Sci Data

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Caring for children with developmental and epileptic encephalopathies (DEE) can be challenging for primary caregivers due to the complexity of the condition and the need to provide ongoing care. This has a psychosocial impact on their quality of life, including increased stress, anxiety, and depression, as well as an impact on their support network, work, and relationship with the affected child. It is important that caregivers receive help to manage the psychosocial impact of caring for a child with DEE and promote their long-term well-being. Besides, it is critical that policymakers receive quantitative data about this impact to adequately respond to the needs of these families. To this end, a database was developed using the Childhood Rare Epilepsy Social Impact Assessment (CRESIA) psychosocial impact measurement instrument to quantitatively assess the quality of life of caregivers.

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“…Caring for a child with DEEs has a social and psychological impact on the entire family structure, especially for parents, depending on the severity of the disorder, its complexity and symptomatology [4]. It also requires coping skills, social support and resources to cope with their care demands [5].…”

Section: Introductionmentioning

confidence: 99%

The impact of developmental and epileptic encephalopathies on families: A qualitative study

García,

Güeita-Rodríguez,

Jiménez-Antona

et al. 2024

Preprint

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Developmental and epileptic encephalopathies (DEEs) cause disability and dependence affecting both children and the family. The questions guiding this study were: What changes do parents of children with DEEs experience in their life as a couple? What changes occur within the family and for the other family members?. We carried out a qualitative study based on the interpretivist paradigm. Twenty-one participants were selected by means of purposive sampling. Parents of children with DEEs of SCN1A, KCNQ2, CDKL5, PCDH19 and GNAO1 variants were included. In-depth interviews and researcher notes were used for data collection. A thematic analysis was performed on the data. Three themes were identified in the results: a) Assuming conflicts and changes within the couple, which caused them to distance themselves, reduced their time and intimacy and made them reconsider having more children; b) Impact of the disorder on siblings and grandparents, where it conditioned siblings who perceived DEEs as a burden in their lives, felt neglected, and needed to grow and mature alone; whereas grandparents suffered for their grandchildren and parents, in addition to perceiving that their health worsened, and c) Reconciling the care of the child with family life and work; this led the parents to share tasks, abandon or reduce working hours and ask for help Conclusions: Caring for a child with DEEs can result in neglect of social, psychological, emotional, recreational, educational, or occupational needs and obligations that ultimately impact all family members.

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Measuring the impact of epilepsy on families

Cited by 8 publications

References 28 publications

Family Burden and Epilepsy Surgery in Children with Drug-Resistant Epilepsy

Family Burden and Epilepsy Surgery in Children with Drug-Resistant Epilepsy

Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies

The impact of developmental and epileptic encephalopathies on families: A qualitative study

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