Experiences and needs of parents of young children with active epilepsy: A population-based study

Abstract

To gain a comprehensive understanding of the experiences and needs of parents of young children with epilepsy from a total population sample. The parents (mothers (n=38), fathers (n=9)) of 40/53 (75% of total population) young children ((1-7 years; 23male, 17 female) with 'active' epilepsy (had a seizure in the last year or taking AEDs) were interviewed either in person or over the telephone using a semi-structured interview schedule. The families were resident in the south of the UK. The interviews were audio-recorded, transcribed, and coded using thematic analysis. Thematic analysis revealed six main themes; diagnostic journey, parental perception of epilepsy management, awareness and impact of associated neurobehavioral difficulties, inconsistent availability of therapeutic and educational supports, impact on family functioning and need for parental support. Parents reported often having difficulty accessing a professional knowledgeable about epilepsy. While parents were generally satisfied with the initial information they received about seizures and their management, they reported that the association between epilepsy and neurobehavioral issues was often not broached. These developmental/behavioral difficulties often had a bigger impact on child wellbeing and family functioning, but provision of therapeutic and educational supports for the difficulties was often very patchy. Parents noted that early onset epilepsy and associated neurobehavioral difficulties often have a very significant impact on family functioning including increased restrictions on family activities and increased financial burden. Parents would like informational and emotional support to extend beyond the time of epilepsy diagnosis. There is a clear need for comprehensive childhood epilepsy services to include provision for identification and management of child neurobehavioral needs and a focus on family centred care.3

Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis

“…If possible, this should be avoided, as this can lead to a loss of information 11 . Other study results also indicated that parents did not feel sufficiently well informed to talk to their child about epilepsy and did not know how to proceed 8,14–16 . When the children in our study talked about the moment they learnt about their diagnosis, it was clear that many of them had little or no knowledge about epilepsy.…”

“…11 Other study results also indicated that parents did not feel sufficiently well informed to talk to their child about epilepsy and did not know how to proceed. 8,[14][15][16] When the children in our study talked about the moment they learnt about their diagnosis, it was clear that many of them had little or no knowledge about epilepsy. Therefore, they felt that a physician should provide the patients with detailed information about the condition during the first conversation about epilepsy.…”

Development and Evaluation of the CASTLE Trial Online Sleep Intervention for Parents of Children with Epilepsy

“…Previous research has highlighted the need for high-quality online resources for parents of CWE due to the widespread reported use of the internet to access information and support (Jones et al, 2019). Whilst there are many general online sources of information about sleep available for parents, the large quantity of information can feel overwhelming for parents (Walsh et al, 2015;Cook et al, 2021) and decisions about whether or not to engage with resources can be even more difficult for families where children have particular needs or medical conditions as the advice offered may not obviously appear to be relevant or appropriate for their family circumstances (Zeng and Cheatham, 2017).…”

“…An online BSI was chosen for evaluation in this trial due to the RCT evidence of the efficacy of such an approach for similar childhood (Mindell et al, 2006) and adult (Espie et al, 2012) sleep problems in diverse populations. In addition, parents of CWE frequently use the internet to try to access information and support, and others have noted the need for the development of high-quality online resources for parents (Jones et al, 2019). Importantly, an online BSI (i) offers cost effectiveness, (ii) addresses many logistical considerations of rolling out and delivering nationwide interventions, (iii) aligns with future NHS trends in telemedicine, minimising NHS staff burden and the need for staff training to deliver the intervention, and (iv) has the potential to ultimately maximise patient access to the intervention.…”

Curriculum And Studies In Enhancing The Understanding Of Mathematical Concepts On Elementary School Students

“…The basic concepts of simple science can be done by children in learning activities individually or in groups (25)(26)(27) in the classroom under the guidance of teachers or independently through demonstration activities (28) and other evidentiary activities. Children's knowledge needs to be owned early on (29)(30)(31). To record all events experienced through the process of education and learning that is good and right.…”