Putting children forward for epilepsy surgery: A qualitative study of UK parents' and health professionals' decision-making experiences
MetadataShow full item record
Abstract© 2016 Elsevier Inc. Background Against a backdrop of recommendations for increasing access to and uptake of early surgical intervention for children with medically intractable epilepsy, it is important to understand how parents and professionals decide to put children forward for epilepsy surgery and what their decisional support needs are. Aim The aim of this study was to explore how parents and health professionals make decisions regarding putting children forward for pediatric epilepsy surgery. Methods Individual interviews were conducted with nine parents of children who had undergone pediatric epilepsy surgery at a specialist children's hospital and ten healthcare professionals who made up the children's epilepsy surgery service multidisciplinary healthcare team (MDT). Three MDT meetings were also observed. Data were analyzed thematically. Findings Four themes were generated from analysis of interviews with parents: presentation of surgery as a treatment option, decision-making, looking back, and interventions. Three themes were generated from analysis of interviews/observations with health professionals: triangulating information, team working, and patient and family perspectives. Discussion Parents wanted more information and support in deciding to put their child forward for epilepsy surgery. They attempted to balance the potential benefits of surgery against any risks of harm. For health professionals, a multidisciplinary approach was seen as crucial to the decision-making process. Advocating for the family was perceived to be the responsibility of nonmedical professionals. Conclusion Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences.
CitationHeath, G., Abdin, S., Begum, R. and Kearney, S. (2016) Putting children forward for epilepsy surgery: A qualitative study of UK parents' and health professionals' decision-making experiences, Epilepsy and Behavior, 61, pp. 185-191.
JournalEpilepsy and Behavior
PubMed ID27371883 (pubmed)
DescriptionThis is an accepted manuscript of an article published by Elsevier in Epilepsy and Behavior on 29/06/2016, available online: https://doi.org/10.1016/j.yebeh.2016.05.037 The accepted version of the publication may differ from the final published version.
Except where otherwise noted, this item's license is described as https://creativecommons.org/licenses/by-nc-nd/4.0/
- Putting children forward for epilepsy surgery: A qualitative study of UK parents' and health professionals' decision-making experiences.
- Authors: Heath G, Abdin S, Begum R, Kearney S
- Issue date: 2016 Aug
- Parents' and children's decision-making and experiences in pediatric epilepsy surgery.
- Authors: Bach Q, Thomale UW, Müller S
- Issue date: 2020 Jun
- Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers.
- Authors: Rahi JS, Manaras I, Tuomainen H, Hundt GL
- Issue date: 2004 Oct
- "It was five years of hell": Parental experiences of navigating and processing the slow and arduous time to pediatric resective epilepsy surgery.
- Authors: Pieters HC, Iwaki T, Vickrey BG, Mathern GW, Baca CB
- Issue date: 2016 Sep