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

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 ch...

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Bibliographic Details
Published in:BMJ open Vol. 13; no. 1; p. e066872
Main Authors: Uhl, Stacey, Konnyu, Kristin, Wilson, Renee, Adam, Gaelen, Robinson, Karen A, Viswanathan, Meera
Format: Journal Article
Language:English
Published: England British Medical Journal Publishing Group 31.01.2023
BMJ Publishing Group LTD
BMJ Publishing Group
Series:Original research
Subjects:
Caregivers
Child
Children & youth
Content analysis
Convulsions & seizures
Data analysis
Data collection
Decision Making
Emotions
Epilepsy
Epilepsy - therapy
Families & family life
Humans
Knowledge
Medical personnel
Neurology
NEUROSURGERY
Paediatric neurology
Parents
Parents & parenting
Pediatrics
Professionals
QUALITATIVE RESEARCH
Surgery
Paediatric neurology
Epilepsy
QUALITATIVE RESEARCH
NEUROSURGERY
ISSN:2044-6055, 2044-6055
Online Access:Get full text
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Summary: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.
Bibliography:Original research
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SU and KK are joint first authors.
ISSN:2044-6055
2044-6055
DOI:10.1136/bmjopen-2022-066872