Parental experience and decision-making for epilepsy surgery: A systematic review of qualitative and quantitative studies

Samanta, Debopam; Hoyt, Megan Leigh; Perry, Μ. Scott

doi:10.1016/j.yebeh.2021.108263

Cited by 17 publications

(10 citation statements)

References 46 publications

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“…The link between knowledge of and attitudes and traditional solid values toward Epilepsy has been documented by various studies [6,25,34,35]. Thus, positive attitudes toward Epilepsy had been predicted by adequate knowledge and understanding [6,[36][37][38][39][40]. Therefore, it is imperative that a thorough exploration of the values and attitudes towards Epilepsy, positive values and attitudes can be instigated on primary school learners.…”

Section: • Skillsmentioning

confidence: 99%

Epilepsy life skill education guidelines for primary school teachers and learners in Limpopo and Mpumalanga Provinces, South Africa: Multiphase mixed methods protocol

et al. 2022

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Epilepsy is a disorder in which nerve cell activity in the brain is disturbed, causing seizures. It may result from a genetic condition and occurs mainly in children, especially at a primary level. Most people living with Epilepsy suffer from stigma and discrimination because of a lack of knowledge regarding Epilepsy. This study aims to develop life skills education guidelines for primary school learners of Limpopo and Mpumalanga provinces to educate learners about Epilepsy, thus decreasing stigma and discrimination. A multimethod research approach will be used in this study to fulfil its purpose. Both stages 1 and 2 of the empirical phase (phase 1) will employ an exploratory-descriptive study design focusing on the primary school teachers, life skills educational advisors and learners to obtain their perceptions or views regarding the need to include Epilepsy in life skills education. Data will be collected using individual interviews for life skill educational advisors and focus group discussions for teachers and learners at the sampled primary schools in Limpopo and Mpumalanga provinces. Phase two will conceptualise the phase 1 findings into the conceptual framework, and phase 3 will develop and validate the life skills guideline. This study will adhere to both internal and external ethical considerations. Recommendations will be made based on the findings of the study.

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Section: • Skillsmentioning

confidence: 99%

Epilepsy life skill education guidelines for primary school teachers and learners in Limpopo and Mpumalanga Provinces, South Africa: Multiphase mixed methods protocol

et al. 2022

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“…These findings are supported by a similar review conducted by Samanta et al that sought to understand caregiver decision making around epilepsy surgery for children with drug-resistant epilepsy. 25 In their synthesis of a similar body of evidence, these reviewers identified the following as key determinants: knowledge and information, communication and care coordination, caregivers’ emotional state and socioeconomic factors. While the findings of our review are similar to Samanta, our scope and methodology differ.…”

Section: Discussionmentioning

confidence: 99%

Parent perceptions and decision making about treatments for epilepsy: a qualitative evidence synthesis

et al. 2023

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ObjectivesEpilepsy treatment decision making is complex and understanding what informs caregiver decision making about treatment for childhood epilepsy is crucial to better support caregivers and their children. We synthesised evidence on caregivers’ perspectives and experiences of treatments for childhood epilepsy.DesignSystematic review of qualitative studies using a best-fit framework and Grading of Recommendations Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) approach.Data sourcesSearched Embase, PubMed, CINAHL, PsycINFO, SocINDEX and Web of Science from 1 January 1999 to 19 August 2021.Eligibility criteriaWe included qualitative studies examining caregiver’s perspectives on antiseizure medication, diet or surgical treatments for childhood epilepsy. We excluded studies not reported in English.Data extraction and synthesisWe extracted qualitative evidence into 1 of 14 domains defined by the Theoretical Domains Framework (TDF). One reviewer extracted study data and methodological characteristics, and two reviewers extracted qualitative findings. The team verified all extractions. We identified themes within TDF domains and synthesised summary statements of these themes. We assessed our confidence in our summary statements using GRADE-CERQual.ResultsWe identified five studies (in six reports) of good methodological quality focused on parent perceptions of neurosurgery; we found limited indirect evidence on parents’ perceptions of medications or diet. We identified themes within 6 of the 14 TDF domains relevant to treatment decisions: knowledge, emotion; social/professional role and identity; social influence; beliefs about consequences; and environmental context and resources.ConclusionsParents of children with epilepsy navigate a complex process to decide whether to have their child undergo surgery. Educational resources, peer support and patient navigators may help support parents through this process. More qualitative studies are needed on non-surgical treatments for epilepsy and among caregivers from different cultural and socioeconomic backgrounds to fully understand the diversity of perspectives that informs treatment decision making.

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“…10 There is a misconception for both patients and providers that epilepsy surgery should be reserved as a last resort because it is experimental, high-risk, or because of unrealistic expectations for medical therapy. 11 Barriers identified included access to knowledge and information, communication and coordination issues; caregiver's emotional state, and socioeconomic effects. 12 This knowledge gap also extends to medical providers who may have inadequate knowledge about epilepsy surgery for DRE, poor identification, and referral of DRE, negative or ambivalent attitudes about epilepsy surgery, poor communication about the risk–benefit analysis, and coordination issues.…”

Section: Underutilization Of Epilepsy Surgerymentioning

confidence: 99%

An Introduction to Minimally Invasive Pediatric Epilepsy Surgery

Riviello

Curry

Weiner

2022

Journal of Pediatric Epilepsy

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The field of minimally invasive surgery has evolved over the past 50 years, including neurosurgery, with an evolution to “minimally invasive neurosurgery” when feasible. Epilepsy surgery has followed this trend, with a transition from standard neurosurgical techniques to minimally invasive techniques in all phases of neurosurgical involvement. These include the diagnostic intracranial electroencephalogram with a subdural exploration to stereoelectroencephalography, the actual resection from an open craniotomy to a less destructive technique, or the multiple modalities of neuromodulation instead of a destructive surgery.The influence of these minimally invasive techniques has resulted in a change in the overall philosophy of pediatric epilepsy surgery. The expectations of what is considered “successful” epilepsy surgery has changed from total seizure control, in other words, a “cure,” to palliative epilepsy surgery with a decrease in the targeted seizures, especially “disabling seizures.” This has led to an overall greater acceptance of epilepsy surgery. This article summarizes the major reasons behind the explosion of minimally invasive pediatric epilepsy surgery, which are amplified in the subsequent articles. Some of this chapter includes the authors' opinions.

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Parental experience and decision-making for epilepsy surgery: A systematic review of qualitative and quantitative studies

Cited by 17 publications

References 46 publications

Epilepsy life skill education guidelines for primary school teachers and learners in Limpopo and Mpumalanga Provinces, South Africa: Multiphase mixed methods protocol

Epilepsy life skill education guidelines for primary school teachers and learners in Limpopo and Mpumalanga Provinces, South Africa: Multiphase mixed methods protocol

Parent perceptions and decision making about treatments for epilepsy: a qualitative evidence synthesis

An Introduction to Minimally Invasive Pediatric Epilepsy Surgery

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