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Short-stay urgent hospital admissions of children with convulsions: A mixed methods exploratory study to inform out of hospital care pathways

  • Cari Malcolm,

    Roles Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Writing – original draft

    Affiliation School of Health Sciences, University of Dundee, Dundee, United Kingdom

  • Pat Hoddinott ,

    Roles Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Validation, Writing – review & editing

    p.m.hoddinott@stir.ac.uk

    Affiliation Nursing, Midwifery and Allied Health Professions Research Unit, University of Stirling, Stirling, United Kingdom

  • Emma King,

    Roles Data curation, Formal analysis, Investigation, Project administration, Writing – review & editing

    Affiliation Nursing, Midwifery and Allied Health Professions Research Unit, University of Stirling, Stirling, United Kingdom

  • Smita Dick,

    Roles Data curation, Formal analysis, Project administration, Writing – review & editing

    Affiliation Child Health, University of Aberdeen, Aberdeen, United Kingdom

  • Richard Kyle,

    Roles Conceptualization, Funding acquisition, Methodology, Writing – review & editing

    Affiliation Academy of Nursing, Department of Health and Care Professions, Faculty of Health and Life Sciences, University of Exeter, Exeter, United Kingdom

  • Philip Wilson,

    Roles Conceptualization, Funding acquisition, Investigation, Methodology, Writing – review & editing

    Affiliations Centre for Rural Health, University of Aberdeen, Aberdeen, United Kingdom, Centre for Research and Education in General Practice, University of Copenhagen, København, Denmark

  • Emma France,

    Roles Conceptualization, Funding acquisition, Methodology, Writing – review & editing

    Affiliation Nursing, Midwifery and Allied Health Professions Research Unit, University of Stirling, Stirling, United Kingdom

  • Lorna Aucott,

    Roles Conceptualization, Formal analysis, Funding acquisition, Methodology, Writing – review & editing

    Affiliation Health Services Research Unit, University of Aberdeen, Aberdeen, United Kingdom

  • Stephen W. Turner

    Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Writing – review & editing

    Affiliations Child Health, University of Aberdeen, Aberdeen, United Kingdom, Women and Children Division, NHS Grampian, Aberdeen, United Kingdom

Abstract

Objective

To inform interventions focused on safely reducing urgent paediatric short stay admissions (SSAs) for convulsions.

Methods

Routinely acquired administrative data from hospital admissions in Scotland between 2015–2017 investigated characteristics of unscheduled SSAs (an urgent admission where admission and discharge occur on the same day) for a diagnosis of febrile and/or afebrile convulsions. Semi-structured interviews to explore perspectives of health professionals (n = 19) making referral or admission decisions about convulsions were undertaken. Interpretation of mixed methods findings was complemented by interviews with four parents with experience of unscheduled SSAs of children with convulsion.

Results

Most SSAs for convulsions present initially at hospital emergency departments (ED). In a subset of 10,588 (11%) of all cause SSAs with linked general practice data available, 72 (37%) children with a convulsion contacted both the GP and ED pre-admission. Within 30 days of discharge, 10% (n = 141) of children admitted with afebrile convulsions had been readmitted to hospital with a further convulsion. Interview data suggest that panic and anxiety, through fear that the situation is life threatening, was a primary factor driving hospital attendance and admission. Lengthy waits to speak to appropriate professionals exacerbate parental anxiety and can trigger direct attendance at ED, whereas some children with complex needs had direct access to convulsion professionals.

Conclusions

SSAs for convulsions are different to SSAs for other conditions and our findings could inform new efficient convulsion-specific pre and post hospital pathways designed to improve family experiences and reduce admissions and readmissions.

Introduction

Convulsions, febrile and afebrile, are a common reason for children’s emergency department (ED) attendance and short-stay admissions (SSA) to hospital [14], placing considerable burden on health care systems as well as children and families. Febrile and afebrile convulsions are often similar in presentation, both being generally brief and resolving spontaneously prior to assessment by a health professional [5]. The first occasion a child has loss of consciousness and involuntary movements associated with a convulsion will usually prompt an ambulance call and be conveyed to the nearest ED. Assuming that the convulsions are not complex in nature, that the child has recovered completely, and that parental reassurance, education, and safety netting has been provided, hospitalisation is seldom required and any further convulsions can usually be safely managed at home or in the community [58]. High levels of ED attendance and SSAs could indicate poor management of the condition, challenges in accessing specialist care, or that parents feel unable to manage a convulsion at home [910].

The Flow of Admissions in Children and Young People (FLAMINGO) project was undertaken in response to the growing number of paediatric urgent hospital admissions in the UK [411], explained largely by rising SSAs [4, 12]. This exploratory sequential mixed-methods study aimed to improve understanding of SSAs in Scotland through linkage of national databases to identify referral pathways and characteristics of SSAs. Qualitative interviews with professionals were complemented by parent experiences and Public Patient Involvement. The main FLAMINGO study findings, published elsewhere, report on quantitative data linkage analysis of routinely acquired Scottish data to identify referral sources and characteristics for urgent paediatric SSAs arising from a range of common conditions including, but not limited to, viral illness, asthma and bronchiolitis [13, 14] and on qualitative interviews with 21 parents and 48 health professionals communicating their desired outcomes of pre-hospital urgent care for these urgent SSAs [15]. Data linkage findings from the main FLAMINGO dataset indicated a high prevalence of SSAs for convulsions presenting at the emergency department (ED) [13] which, given the lack of recently published evidence in this area, warranted further detailed investigation. Previous FLAMINGO papers [1316] did not specifically report the characteristics of SSAs related to convulsions or parental and professional experiences of these admissions. Therefore, additional quantitative analysis and qualitative research involving the recruitment of Epilepsy Specialist Nurses (ESN)s was undertaken. This paper communicates novel findings from this research to identify learning for improvement in care pathways and development of potential interventions focused on safely reducing urgent SSAs for convulsions and improving care pathways, by analysing (i) characteristics of SSAs for children with afebrile or febrile convulsions, and (ii) qualitative interviews with professionals and parents with experience of childhood convulsions.

Methods

Quantitative data linkage

A comprehensive account of the data linkage methodology has been published [13] and is summarised here. Anonymised details of all urgent medical paediatric (0 to <16 years of age) hospital admissions and SSAs in Scotland between 2015 and 2017 were identified from the Scottish Morbidity Record 01 database (SMR01). These were linked with the Unscheduled Care Datamart (UCD) and general practice data obtained by the Trusted Third Party agent Albasoft. GP data were available after the data custodian opted in to share data, and this occurred for 11% of admissions.

All unscheduled and SSAs for a diagnosis of febrile and/or afebrile convulsions, according to the International Classification of Diseases, 10th Revision (ICD-10) categories of R560, G409, and R568 were examined to identify trends in the following factors of interest: child characteristics (age, sex, ethnicity, SIMD); admission characteristics (time of day, day of week, month of year, referral source). Definitions related to this paper, and specifically the data linkage methodology, are provided in Table 1.

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Table 1. Definitions of key terms referred to in this paper.

https://doi.org/10.1371/journal.pone.0301071.t001

Descriptive quantitative data are presented. Characteristics of SSAs for convulsion and all other SSAs were compared using Chi squared test, Student’s t-test and Mann-Whitney U test as appropriate. Standard statistical software was used (IBM SPSS version 24.0.0.0).

Qualitative interviews

Our sampling approach and methods for conducting qualitative interviews with parents and professionals are reported in Malcolm et al. [15]. To focus more specifically on the experience of SSAs for childhood convulsions, and complement the existing qualitative FLAMINGO dataset, additional recruitment of paediatric Epilepsy Specialist Nurses (ESNs) was undertaken. ESNs working in five Health Boards, selected for the diversity observed in the quantitative findings [14], were purposively sampled. Potential ESN participants were sent an information sheet, study invitation, and contact details for the research team to opt into a telephone interview.

Telephone interviews with ESNs were conducted between January and March 2021 by researchers (CM, EK) with experience of qualitative health services research (CM, EK) and clinical paediatric nursing (CM). The original FLAMINGO study semi-structured topic guide was modified, once data linkage findings for convulsions were known, to include specific questions about experiences of SSAs for convulsions (S1 File). All interviews were audio recorded, anonymised, transcribed verbatim, and uploaded to QSR International NVivo (version 12) software for data management and analysis of data relating to convulsions.

The FLAMINGO qualitative dataset, comprising parent interviews for all causes of SSAs, included four parents discussing their experiences of SSAs for convulsions. Their experiences contribute to the interpretation of data linkage and professional interview findings.

Thematic framework analysis [17, 18] was completed to explore the experiences of unscheduled SSAs of children with convulsion. Members of the FLAMINGO qualitative team (EK, CM, EF, PH) familiarised themselves with the data, independently read a sample of four transcripts, two from each participant group (parents and professionals) and met to discuss and develop an initial high-level coding framework. The analytical coding framework was systematically applied to the remaining transcripts. EK and CM carried out line by line coding, with weekly discussion with PH and EF. The team agreed final themes, data mapping and interpretation using a framework matrix to organise data characteristics for parents and professionals facilitating cross-Health Board and within-sample comparisons. To ensure rigour and trustworthiness we remained iterative, open, and reflexive throughout the analysis keeping notes and an audit trail from the raw data to the finalised themes [18]. Integration of data-linkage and the qualitative findings were discussed at monthly meetings of the entire FLAMINGO team.

Ethics approval and ethical considerations

The quantitative part of the study was approved by the National Caldicott guardian (PBPP 1718–0836) and the quantitative part by the NHS North of Scotland Research Ethics Service (REC references: 19/NS/0134). All participants provided written consent to take part in the study.

Results

Unscheduled urgent paediatric hospital admissions for febrile and afebrile convulsions

Between 2015 and 2017, there were 171,039 urgent medical paediatric admissions to Scottish hospitals, 92,229 (54%) of which were SSAs [13]. A referral source was identified for 45,873 (49.7%) of these SSAs, however GP data were only available for 10,588 (11%). Febrile convulsions accounted for 1,916 (1.1%) of admissions, including 976 (1.6%) SSAs, whilst afebrile convulsions accounted for 2,661 (1.6%) of admissions, including 1,344 (1.5%) SSAs. Relevant pre-existing conditions were identified for 284 (21%) of individuals admitted with afebrile convulsions and 22 (2%) with febrile convulsions (list of pre-existing conditions included in S2 File).

The ED was the referral source for 625 (64%) of SSAs for febrile convulsions and for 830 (62%) of afebrile convulsions (Table 2). The referral source for 211 admissions with convulsions within the subset where GP data were available was: GP 22 (10%); OOH 7 (3%); ED 105 (50%); and more than one referral source 77 (37%), of whom 72 had seen both GP and ED on the same day. In this subset, the proportions of referral sources for conditions other than convulsions were GP 3362 (42%); OOH 816 (10%); ED 1748 (22%); and 2088 (26%) for more than one source.

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Table 2. Final referral source for paediatric SSAs of febrile (n = 976) and afebrile convulsions (n = 1344).

https://doi.org/10.1371/journal.pone.0301071.t002

We have previously reported that children where ED was the referral source for all conditions leading to SSAs were older (median age 2.4), more likely to be from the most deprived communities (n = 9,440; 32%) and to have a white European ethnicity (n = 21,360; 73%) [13]. Table 3 compares this all SSA data with data for febrile, afebrile and all convulsions. The median (interquartile range) age of all children admitted with convulsions was 2.8 years (1.5, 6.8) compared to 2.2 years (0.7, 5.7) for other SSAs, p<0.001. The majority of children admitted with febrile convulsions were under four years of age. Children admitted with afebrile convulsions were spread evenly across the age groups. The proportion of White European children admitted with febrile and afebrile convulsions and comparable to SSA admissions referred from ED. The proportions of SSAs in each SIMD quintile for both febrile and afebrile convulsions were comparable; 636 (27.8%) of all convulsion related SSAs lived in the most deprived quintile compared to 9940 (32.0%) for all ED admissions.

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Table 3. Characteristics of paediatric SSAs for febrile and afebrile convulsions.

https://doi.org/10.1371/journal.pone.0301071.t003

Admissions with convulsions were more evenly distributed across days of the week compared to both all SSAs and all SSAs with ED as a referral source. Relatively few convulsions attended ED between 6pm and midnight, with proportions similar to all SSA referred via ED.

Readmissions within 30 days after discharge following a SSA were more common among children with afebrile convulsions (n = 249; 18.5%) compared to both febrile convulsions (n = 72; 7%) and SSAs for all other causes (n = 12,378; 13%). Similarly, readmission within 30 days for the same diagnosis were more common among children with afebrile convulsions (n = 141; 10.5%) compared to both febrile convulsions (n = 42; 4%) and SSAs for all other causes (n = 5976; 6.5%).

Qualitative interviews

Convulsions were discussed by 12 of the 41 professionals from our wider qualitative dataset, and an additional seven ESNs recruited specifically to share their experiences of supporting families in convulsion scenarios and suggest possible explanations for SSAs. Table 4 provides sample characteristics for 19 professionals contributing data for the analysis of convulsions. Of the 21 parents with experience of SSAs in the FLAMINGO study (sample characteristics detailed elsewhere [15]), four mothers had experience of SSA for convulsions pre-Covid for children aged under a year to 10 years and living in SIMD 1, 2, 4 and 5 across three Health Boards.

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Table 4. Characteristics of interview participants (n = 19).

https://doi.org/10.1371/journal.pone.0301071.t004

Findings from professional interviews are presented under three overarching themes (Fig 1), complemented by experiences of four parents.

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Fig 1. Overarching themes related to experiences of unscheduled hospital attendance or SSA of children with convulsions.

https://doi.org/10.1371/journal.pone.0301071.g001

Theme 1 ‐ Anxiety and panic.

Professionals and parents perceived parental anxiety and panic to be the driver for accessing care, especially from the emergency services. Parents referred to panicking when observing their child having a convulsion, whether it was the first or subsequent time. One parent explained how their panic was heightened when their child’s febrile convulsion occurred outside usual GP opening hours. This was their reason for contacting the emergency service 999 phone line that triggers an ambulance attendance, whereas during the day they would contact the GP (Table 5, quote 1). Where parents had previous experience of their child having a febrile convulsion, a rise in temperature or inability to control a rising temperature was enough to instil panic and lead to hospital attendance. In addition to perceiving parents’ fear around convulsions to be a primary reason for the attending ED (Table 5, quote 2), professionals explained how parental anxiety also informed their decisions about admitting, even in situations where the convulsion had subsided and clinically an admission was deemed unnecessary (Table 5, quote 3). Finally, as an ESN explained, whilst some parents can manage their child’s convulsions with confidence, others find the situation too anxiety-provoking and are scared, for example, to administer emergency seizure medications, regardless of whether they have been previously supported and trained by ESNs to do so. For these parents, the preferred option would always be to attend hospital (Table 5, quote 4).

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Table 5. Exemplar quotations from interview participants.

https://doi.org/10.1371/journal.pone.0301071.t005

Theme 2 ‐ Reassurance, observation, and proactive planning.

Parents described their need for reassurance and ongoing support from professionals to manage the anxiety and panic experienced following a convulsion. The distressing nature of watching their child have a convulsion, often coupled with uncertainties around its cause and whether it might happen again, led parents to seek reassurance from professionals. When asked to share their views on the appropriateness of the decision to admit their child to hospital following a convulsion, parents referred to it being effective in reducing their worry, and that they considered this to be more important than any potential inconveniences related to a SSA (Table 5, quote 5). This concurs with the experience of professionals who acknowledged that whilst the clinical features of convulsions are the primary factor informing admission decisions, with those experiencing atypical or complex convulsions more likely to be admitted, a period of observation in hospital or a SSA is often necessary in cases of simple febrile convulsions to reassure parents (Table 5, quotes 6 and 7). Following any presentation with convulsions, professionals explained how the provision of safety netting advice and information leaflets to parents was an important intervention. This was confirmed by parents who described how prior to being sent home, they received instructions from hospital staff around what to do if another convulsion happens and what actions they should take if they have any concerns and found this to be beneficial and supportive (Table 5, quote 8).

Insights into the quantitative data linkage findings on the relatively high proportion of re-admissions for the same diagnosis when compared to all SSAs were shared by one parent whose child had repeated ED visits for frequent atypical convulsions, who was awaiting a formal diagnosis. This parent felt reassured and supported only when hospital staff arranged hospital admission for additional diagnostic tests and assessments (Table 5, quote 9). ESNs highlighted the need for better continuity of care for children experiencing recurrent convulsions while they await referral to specialist services. ESNs suggested that in addition to discharge with safety netting advice, earlier follow up support from ESNs in the community could help prevent repeated ED attendances in situations where parents are seeking reassurance.

Several professionals emphasised that fevers with convulsions are concerning symptoms for parents. They reinforced the need to continue raising awareness and promoting safe management of fevers in children amongst parents, nurseries, schools and the wider public (Table 5, quotes 10 and 11). Professionals recommended that proactive planning in terms of further health education, reassurance and relieving parental fears may help empower parents to better cope if their child has a further convulsion with or without a fever and safely reduce some SSAs.

Theme 3 ‐ Care from the right person, in the right place, at the right time.

One parent whose child had a convulsion occurring outside GP opening hours described contacting the NHS24 service as their initial triage point, as is recommended UK urgent care guidance. However, the lengthy wait to speak to a professional via the NHS24 telephone service led to their decision to attend ED directly. In situations where parents are asked to wait for a doctor or nurse to call them back, any changes in their child’s symptoms or increasing concern during that waiting time was often the catalyst for attending ED directly (Table 5, quote 12). Similarly, ESNs described parental expectations of timely access to healthcare during an acute convulsion in the community. They explained how parents often share their frustration with using the NHS24 pathway to access advice due to the long waits to speak with a professional (Table 5, quote 13). Parents could wait at varied points between home to the ED, including waiting for an NHS24 call back, for an ambulance, to be triaged, or to see a doctor with urgent assessment of paramount importance to families (Table 5, quote 14). Despite descriptions of the convulsions subsiding quickly and before the child and family had arrived at the ED, being seen by a professional with expertise of managing convulsions in children overrides any perceived inconvenience of attending hospital.

Parents described situations where there was a difference or disagreement in their own assessment of their child following a convulsion and the assessment of healthcare staff. If parents had concern that the NHS24 call handler or nurse was not accepting their assessment of the situation, they would still attend the ED (Table 5, quote 15). This has relevance in situations where there is a potential to discount rare but important symptoms or when triage is being undertaken by a someone without specialist knowledge of convulsions and is complicated in situations where the convulsion has resolved, and the child is no longer displaying symptoms (Table 5, quote 16). ESNs and a parent (Table 5, quote 17) described how video technology and telehealth can assist in the triage and care of children experiencing convulsions given their often transient and intermittent nature. Professionals positively described how video technology has rapidly accelerated during the COVID-19 pandemic where the use of videos recorded by parents or carers proved beneficial in communicating remotely with professionals when lockdown and social distance measures were in place. Several ESNs proposed further embedding this approach in practice (Table 5, quote 18).

The impact of receiving conflicting or inconsistent messages from professionals, particularly those encountered prior to attending hospital, was reported as an additional source of anxiety and unnecessary stressor, which, at times, further reinforced parents’ decisions to seek emergency hospital care (Table 5, quote 19). Furthermore, lack of guidance and advice around management of convulsions in the community was considered by professionals to be another potential contributor to SSAs. This could include, for example, school staff who opt to call an ambulance if a child has a convulsion at school despite a documented convulsion management plan with clear direction on immediate interventions to take following an acute convulsion in place (Table 5, quote 20).

Participants explained how having ‘open access’ as part of safety netting following a SSA for convulsions encouraged parents with concerns or changes in their child’s condition over the first 48 hours, to contact the hospital ward or unit directly and arrange to be seen again if required (Table 5, quotes 8 and 21). This approach provided parents with direct access to staff who were familiar with the child’s case and facilitated continuity of care. Open access may also prevent some readmissions, as suggested by one professional (Table 5, quote 22). ESNs explained how their role is to educate and empower families to manage their child’s convulsions at home. However, in situations where the child requires further assessment or observation, having this specialist pathway where children are under the care of ESNs can allow them in some cases to bypass other referral routes and have the child seen in hospital directly (Table 5, quote 23). This is similar to offering direct access for children with complex conditions and care needs, which, as described by a consultant, is a reasonably common occurrence (Table 5, quote 24).

Discussion

The main quantitative finding was that many characteristics of SSA for convulsions were different to those for all SSAs (see Table 3). Notably a greater proportion of SSAs are referred from ED when compared to all causes of SSAs. More than one referral source was contacted prior to 37% of SSA for convulsions. The frequency of readmissions for afebrile convulsions is twice as many as for SSAs for other causes with 10% readmitted within a month. The main qualitative findings are that timely access to, and reassurance from, health professionals to relieve parental anxiety and panic that the situation is life threatening are drivers of professional and parental behaviours. This can be the impetus for parents to attend hospital directly even if the convulsion has stopped, particularly when GP practices are closed. Collectively, the mixed method data suggest convulsions remain a frequent reason for SSAs in children and identify a requirement for further guidance for managing convulsions across pre and post hospital pathways.

Our qualitative findings around the fear and anxiety some parents experience following their child’s convulsion provide some explanation for the ED being a primary referral source for SSAs and is consistent with existing evidence indicating parental anxiety and inadequate education around convulsion care are factors leading to urgent access to health services for children experiencing afebrile convulsions [19, 20]. Febrile convulsions are also well documented as a source of fear and anxiety for parents, especially concerning the potential dangers, and are a reason for attending the ED to seek reassurance [2123]. Not all parents experience anxiety and many manage their child’s convulsions with confidence, yet our findings indicate a requirement to address this issue of panic and resultant urgent ED attendance.

Westin and Sund Levander [21] found knowledge of febrile convulsions to be lacking among parents prior to their child’s first febrile convulsion episode, and propose it be included in anticipatory advice given to all new parents. Similarly, whilst managing fever is common knowledge for health professionals, it may not be as readily known or accessible to parents [24]. Despite being published nearly 25 years ago, Kai’s [24] findings remain pertinent today. Importantly, it resonates with recommendations for a safety netting approach to raise parents’ awareness of febrile convulsions and to proactively provide health education around fever in infants and young children in our study.

Our qualitative findings are consistent with published research regarding the value of ESNs [2527], the associated increase in hospital admissions when families lack access to such specialist support [28] and a recent UK-based national audit recommending continued expansion of the paediatric ESN service [29]. Moreover, our quantitative data on readmissions being more common in children with afebrile conditions further highlights the potential of specialist care to improve outcomes. Recommendations resulting from our analysis would include the provision of anticipatory guidance for parents on convulsions and additional community-based support to families following a SSA which may help safely avoid future admissions. ESNs are ideally placed to contribute to this. The potential value of using home-based video technology to support assessment and diagnosis of convulsions should also be further explored. Such an approach would help ensure care from the right person, in the right place, at the right time, a key theme identified in our interview data.

Our quantitative data highlight that readmissions within 30 days with further afebrile convulsions are common whilst our interview data suggest that a proportion of children with known convulsions as part of wider chronic and complex long-term conditions have some level of direct or alternative access to paediatric care thus bypassing the ED. This continuity of care model has, anecdotally, had a positive impact on rates of readmission. Similar accounts of open access to paediatric wards within 48 hours following ED attendance or a SSA for febrile convulsions were highlighted in our interviews with parents as part of the wider safety netting provided to them. It is plausible that such a service could be reducing SSAs for this population and improving the quality of care experience for families, and thus warrants further consideration. Future research is warranted to verify the impact of open access to hospital wards for children with known convulsions on SSAs.

It is important to acknowledge the challenges and complexities convulsions in children can pose for health professionals, especially those in generalist roles and without specialist paediatric expertise [3]. Adopting a cautious approach by staff involved in community care or triage may be necessary to manage uncertainty and risk, and there are situations where hospital admissions are necessary and the appropriate outcome. However, our findings suggest there is potential for safely reducing some SSAs related to convulsions. This could be addressed by modifying existing [9] or developing new pre- and post-hospital evidence-based guidelines to manage childhood convulsions in the community and address parents’ concerns. Future research would be of merit to investigate the impact of implementation of such guidelines and interventions on SSAs for convulsions.

Strengths and limitations

This post-hoc exploratory mixed methods analysis was conceived after identifying notable differences for admissions due to convulsions, compared to other conditions resulting in SSAs, within both quantitative and qualitative data collected during the FLAMINGO study. The mixed method approach facilitated detailed observations through data linkage, complemented by insights from qualitative interviews, to better understand the complexities of care pathways leading to SSAs for children experiencing convulsions.

Some limitations related to our linkage of data are described in Dick et al. [13], the main limitation being incomplete GP data availability which prevented full examination of access to care prior to attending hospital; for example, whether care was accessed from GPs earlier in the day or on the previous day prior to attending the ED following their child’s convulsion. We were, however, able to describe the referral source for admissions with convulsions among the subgroup where GP data were available. It is important to acknowledge that we do not know how representative this sample is from the limited GP data we had access to. Nonetheless, future extensive GP data linkage studies could have merit in identifying whether there is potential to streamline pre-hospital access to specialist assessment, particularly for recurrent seizure, which could be resource efficient as well as a means of allaying parental anxiety in a timely manner.

Our qualitative sample would have benefitted from further convulsion histories, for example, children with complex neurological and neurodevelopmental conditions and children with both a new and established epilepsy diagnosis, in addition to the four children from the original FLAMINGO dataset. We had intended to recruit more parents of children experiencing a SSA for convulsions, however this was not possible within the project timeline and resources due to the COVID-19 pandemic and its resultant impact on our recruitment strategy and access to potential participants. Including ESN perspectives on the patient experiences they have heard partially mitigates this as ESNs play a key role in supporting the coordination and continuity of care between community and hospital settings for children following a first convulsion and ongoing epilepsy support. Their inclusion triangulated earlier parent and professional interview findings and provided unique insights. Greater family diversity in health literacy, cultural and social backgrounds would have further enhanced our qualitative sample.

Most of our qualitative interviews were conducted during the COVID-19 pandemic, when accessing urgent care and the flow within hospitals was disrupted, yet the quantitative data used in our analysis originated from pre-pandemic times. We asked interview participants to focus on pre-pandemic experiences of SSAs before eliciting reflections on any current or future impacts of the pandemic and this can be regarded as a strength by offering additional consideration of how the pandemic may impact urgent care pathways in future.

Conclusions

This in-depth analysis of quantitative and qualitative data from FLAMINGO highlights the differences between SSA for convulsions and for other conditions complemented by clinicians’ experience of caring for children with convulsions. Pre- and post-hospital convulsion pathways have the potential to safely streamline admissions and reduce readmissions which will improve parent experiences and reduce pressure on acute NHS services. Enhanced specialist nurses would play a key role in these care pathways and improve continuity of care.

Supporting information

S2 File. List of pre-existing neurological conditions.

https://doi.org/10.1371/journal.pone.0301071.s002

(DOCX)

Acknowledgments

The authors would like to extend our thanks to the parents and health professionals who participated in this study.

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