Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
Epilepsy Behav. 2024 Jul;156:109794. doi: 10.1016/j.yebeh.2024.109794. Epub 2024 May 10.
[Background and aim] Early onset epilepsy is a neurological condition with significant developmental consequences, and presents affected children and families with challenges which pervade many aspects of family life. Whilst the concerns of parents and the impact on quality of life is well documented in qualitative research, little emphasis has been placed on the context of 'early onset', and the implications of these concerns for research priority setting. We aimed to explore parental perspectives regarding concerns and the impact of early onset epilepsy on the child and family, and to identify priorities for future paediatric epilepsy research. [Methods] The Brain development in Early Epilepsy: Parent Priorities (BEE-PP) project employed a mixed methods approach to collect information on parents' experience of having a child diagnosed with early onset epilepsy before 36 months old and aged up to 16 years old. Parents completed an online survey (n = 15) followed by a focus group (n = 5) to explore their main concerns regarding early onset epilepsy, the impact on family life and research priorities. [Results] A thematic analysis of the focus group data generated eight themes related to concerns of parents, the impact on the family and research priorities. The three main concerns identified were the expected trajectory of their child's development, a lack of seizure control following diagnosis and adverse behavioural side effects of medication. Within family life, early onset epilepsy had an impact on sibling autonomy and psychosocial adaptation, poorer parental wellbeing and restricted social and personal activities. The need for clearer information regarding their child's developmental trajectory, and managing the side effects of medication and their interactions with behaviour over time were topics of priority for future epilepsy research. [Interpretation] The impact of early onset epilepsy on the family is pervasive and requires the provision of appropriate healthcare service-led support for families to improve quality of life and children's adjustment to epilepsy. Regular monitoring of the concerns of parents and the impact of the diagnosis would be beneficial for addressing epilepsy-related and psychosocial needs of the wider family throughout their child's development. Implications for future research priority setting with regards to improved clinician-to-parent information sharing and managing the behavioural side effects of medication are discussed.
[背景与目的]早发性癫痫是一种具有重大发育后果的神经疾病，给患儿及其家庭带来了多方面的挑战。尽管在定性研究中已经充分记录了父母的担忧及其对生活质量的影响，但很少关注“早发性”的背景，以及这些担忧对研究重点设定的影响。我们旨在探讨父母对早发性癫痫患儿及其家庭的关注和影响的看法，并确定未来儿科癫痫研究的重点。[方法]脑发育早期癫痫：家长重点（BEE-PP）项目采用混合方法收集了 15 名早发性癫痫患儿（36 个月以下至 16 岁）父母的信息，父母在线完成了一项调查（n=15），随后进行了焦点小组讨论（n=5），以探讨他们对早发性癫痫的主要关注点、对家庭生活的影响和研究重点。[结果]对焦点小组数据的主题分析产生了与父母关注、家庭影响和研究重点相关的 8 个主题。确定的三个主要关注点是他们孩子预期的发展轨迹、诊断后缺乏对癫痫发作的控制以及药物的不良行为副作用。在家庭生活中，早发性癫痫对兄弟姐妹的自主性和心理社会适应能力、父母的幸福感下降以及社交和个人活动受限产生了影响。未来癫痫研究的重点是需要更清楚地了解孩子的发展轨迹，以及随着时间的推移管理药物的副作用及其与行为的相互作用。[解释]早发性癫痫对家庭的影响是普遍存在的，需要提供适当的以医疗保健服务为导向的支持，以改善家庭的生活质量和儿童对癫痫的适应能力。定期监测父母的关注点和诊断的影响，有利于在儿童发育过程中满足整个家庭与癫痫相关的和心理社会需求。讨论了在改善临床医生与家长的信息共享以及管理药物的行为副作用方面进行未来研究重点设定的意义。
