“ In the wilderness … dealing with difficult situations ” : Knowledge exchange with care home staff in England on managing seizures and epilepsy – An initial exploration

Purpose: With epilepsy increasingly affecting older adults, seizure-related care needs arise in new settings. Persons in these settings must receive optimal support and challenges identified for remediation. This may entail the epilepsy community researching in unfamiliar environments. One setting is care homes. Seizure-related ambulance incidents in them are common. We conducted the first qualitative study with care home staff to explore their experiences and challenges in managing suspected seizures. Methods: Three online focus groups were organised for January 2024 to explore ambulance calls, post-incident procedures, and challenges faced by care home staff when managing seizures. Persons were eligible to participate if they worked as a care assistant, nurse or manager in a care home in North-West England. Different recruitment pathways were employed including direct approach, a managers ’ network, social media and a register of research interested homes. Focus group audio recordings were transcribed and analysed using Hamilton ’ s Rapid Analysis. Results: Recruitment was difficult; 13 care home staff from 12 different homes were ultimately recruited. Despite data saturation not being achieved, insights were gained regarding ambulance call decisions, paperwork navigation, and follow-up care challenges. Patients not having meaningful seizure action plans in place and regulatory restrictions were identified as factors that contributed to potentially avoidable calls for ambulance help being made. Conclusion: This study highlights systemic issues in care homes ’ seizure care, emphasizing the need for further research. The epilepsy community may need to innovate to better research within this increasingly important setting. This study offers insights into the effectiveness of different recruitment strategies.


Introduction
In industrialised nations, epilepsy now predominantly affects older adults [1].Consequently, epilepsy and seizure-related care needs are arising in new environments.Persons in these settings must receive optimal support and any challenges identified for remediation.This may entail the epilepsy community engaging with, and doing research in, unfamiliar settings.
One environment where needs may be increasing is care homes.Most residing in them are aged ≥65 [2] and have dementia [3].In England, care homes are defined by the care regulator as establishments providing personal care and accommodation [4].Around the world, Abbreviations: DNAR, 'do not attempt resuscitation'; ED, emergency department; GP, general practitioner; P, participant.care homes differ in their composition.Nevertheless, common challenges include staff numbers often being lower than recommended, high staff turnover and reliance on agency workers [5][6][7].
In England, care homes can broadly be divided into: (i) those that provide nursing care to residents with the support of onsite registered nurses; and (ii) those that provide generalised care to residents delivered by care assistants with clinical oversight from visiting community health professionals.Some care homes sites contain parts with both types of care [4].A third of homes in England have on site registered nursing provision [8].The remainder rely on care assistants.These are individuals who take responsibility for all aspects of personal care, excluding tasks requiring a nursing qualification, such as administering injections.Another important role within care homes are care home managers since, along with providers, they share legal responsibility to meet the requirements of regulations [9].Beyond business performance, responsibilities can include:: supporting residents, families, and staff; developing local policies governing how the home operates; and monitoring quality of care provided.
Despite the heightened seizure and epilepsy risk among care home residents, limited evidence exists on their care, particularly in Europe.Noble et al. [10], using ambulance data, recently defined the scale and nature of seizure-related needs within care homes in England.They uncovered a disproportionate, and potentially increasing, number of suspected seizure ambulance callouts originating from care homes.Incidence was 55.71 per 1000 person/year in 2021/2022 compared to 5.97 for the wider community.Moreover, conveyance to emergency departments (EDs) invariably occurred, with care home incidents more frequently resulting in ED conveyance compared to those in the wider community, despite the latter being reported as more severe and the potential risk of hospital stays for older persons.
We thus endeavoured to complete the first qualitative study with staff from care homes with and without nursing.It sought to understand their experiences of caring for epilepsy and seizures and identify challenges and potential solutions.Total number of enquiries received: 51; Total number not eligible: 2; Total number who recused themselves from participation as unable to attend on focus group available dates: 2; Total number who did not respond to follow up 21; Total number booked in: 26; Total number booked in who did not attend: 13; Total number who attended a focus group: 13 b ENRICH is an initiative described as being a network of care homes in England who have indicated their willingness to be contacted about and involved in research ('Research Ready Care Homes'; for further details, see: https://enrich.nihr.ac.uk/).

Design
Given the unexplored nature of this topic, qualitative methods were chosen as they allowed participants to raise what they personally felt were important aspects and concerns.Three 'Knowledge Exchange' focus groups, informed by Wilkins and Cooper's definition [11], were conducted.An online format was chosen to maximise accessibility.

Participants
With a view to achieving data saturation, a purposive sample of 25-30 participants was sought.Participants needed to be ≥18 years and employed as a care assistant nurse or manager in a home in North-West England.
Utilising a sampling framework designed to achieve representation from different types of homes 85 homes were randomly selected and emailed an advert for cascading to their staff (Supplementary File 1), with follow-up calls attempted.Due to slow recruitment, this was expanded, with adverts circulated more widely by a regional managers network, by social media and by an organisation registering 'research interested' homes (Fig. 1).

Ethics
University of Liverpool Ethics Committee approval for the study (Ref13098) was granted.Participants received an acknowledgement £50 voucher.

Procedure
Focus groups took place online via video-conferencing software.They commenced by presenting key findings from Noble et al. [10] (Supplementary File 2).Discussions were framed by a topic guide (Supplementary File 3), focusing on four key areas: response to suspected seizures, actions when ambulances arrive, post-incident procedures, and suggestions for improvement.
BM, a qualitative health service researcher, facilitated focus groups.They were audio-recorded and transcribed.Following each group, participants were sent their voucher.They did not review transcripts.

Analysis
Hamilton's Rapid Analysis method [12] helped examine data.BM and AN independently reviewed transcripts and for each workshop they individually populated a 'summary template' generated a priori (Supplementary File 4), creating'episode profiles'.BM and AN consolidated the profiles during meetings at which they discussed areas of agreement and disagreement and formed consensus about the interpretation that best fitted the data.

Participants
Forty-nine eligible staff responded to the adverts.Of these, 26 were booked to attend a focus group, with 13 doing so (11 females, 2 males).They comprised 4 carer assistants 4 registered nurses, and 5 managers.Six participants worked in a home with nursing provision, 7 worked in a home that did not have nursing provision.They came from 12 different homes.Eight of these were owned by an organisation, 4 by a charity and one was independently owned.None of the participants were agencybased staff.
Focus groups occurred in January 2024.They lasted between 86 and 105 min.

Themes
Analysis provided insights into staff experiences.Saturation was not achieved.Rich evidence was available for only two themes.These were as follows, with Table 1 providing additional illustrative participant [P] quotes:

When an ambulance is sought and implications
Participants described situations prompting them to call for an ambulance during suspected seizures.They emphasized that calling for an ambulance was not automatic for individuals with diagnosed conditions.Ambulance assistance was consistently sought if seizures lasted over 5 min.
"…we do try to prevent it if they have an established diagnosis.Otherwise, they'll just go in, take obs', look at bloods.They could be in for 36 h and come back and nothing's changed."(P13, female, manager).
Calling an ambulance generated challenges for staff.For instance, to overcome limited record sharing between and within health and social care providers, staff needed to compile paperwork and legal documents to accompany the resident.They also needed to secure the documents return.Additionally, a staff member often accompanied the resident during hospital conveyance.As residents health needs could have changed during admission, homes also frequently needed to reassess residents before discharge to ensure they could meet them: "… in an emergency situation, you want to be with the resident, but… you're thinking… 'I need to photocopy this and that…I need to do this, and also is there any medication they need with them….'"(P11, female, nurse)."…there's pros and cons of ringing ambulances…your staff members going to be stuck in ED for…a good 10 h really…" (P1, male, care assistant)

Additional factors influencing decisions to seek an ambulance
Participants highlighted non-clinical factors influencing decisions to contact ambulances, expressing dissatisfaction with the lack of support they received: "…a lot of resources are piled into hospitals…we're left really in the wilderness… dealing with very difficult situations…."(P6, female, nurse).
The absence of a comprehensive seizure action plan was identified as a significant factor.Such plans were seen as valuable guides, providing clarity on when to contact an ambulance or what actions were appropriate for each resident.Participants emphasized their importance, especially in large homes and for agency staff.However, it was rare for these plans to be developed or updated with input from external health professionals.Moreover, homes received limited information about residents' health, hindering the basis for them: "they don't come with plans…they'll have the medication, and we'll have a GP summary -'diagnosed epileptic'.Family will say, '… They're on this medication.'…that'sas far as it goes…management will do the care plan based on this…."(P8, female, nurse)."…medical history information is quite bitty and broken …you are often 'following breadcrumbs'."(P3, female, nurse) Another factor was staff confidence.Seizures, especially in homes where they were infrequent, could be frightening.This influenced staff responses, especially at night: "it's about staff confidence in dealing with seizures…the times I've seen a resident…having a seizure…it is very frightening, no matter how many years you're doing the job."(P6, female, nurse)."…there's less of us staff at night…I have noticed…times here where they've rung for an ambulance and I think it's been too soon…there's almost that element of panic…" (P8, female, nurse)

Potential solutions
Participants said a range of actions might improve the situation.Two were frequently cited.
The first was ensuring residents received optimal care for the cause of their suspected seizures.Participants expressed difficulty in accessing support from seizure specialists, particularly after initial seizures.External health professionals were perceived as hesitant to make referrals, viewing it a "…waste of funds…to find out what's wrong" (P5, female, manager), and readily attributed suspected seizures to other conditions: "…our residents have dementia…usually if we notice a difference…if they…become vacant or…out of sorts − the doctor will just put it down to a TIA.He won't say it's a seizure…."(P5, female, manager).Some participants said they themselves questioned whether to 'push' for referrals: "…It is hard…should they investigate?…Is it fair to put that resident through… investigations…scans and things?Even to get them out of the home environment, can be quite traumatising…" (P6, female, nurse).
Securing follow-up for individuals with existing epilepsy diagnoses was easier, but it fell on care homes to arrange it.Ambiguity about whether care home staff had permission to communicate with external health professionals about their residents, complicated matters.Even when follow-up was secured, its manner was often deemed unsuitable: "I do find follow up appointments…can fall through the cracks.We find ourselves chasing a lot " (P3, female, nurse).

"…they've moved more towards phone calls, and I don't think that that's always helpful… that's been a bit of a barrier." (P12, female, manager)
The second action related to remedying a regulatory issue.Some care home sites had both nursing and non-nursing areas.However, funding rules restricted nurses from aiding residents in non-nursing areas, such as administering emergency medication.Consequently, ambulances were often sought unnecessarily: "…you've got nurses standing, watching patients having a seizure because they can't do anything about it…we're not utilizing the services that we've got in care homes already… we're relying on outside agencies…" (P11, female, nurse).

Main findings
To our knowledge, this is the first exploration of care home staff experiences of managing suspected seizures.It provides valuable preliminary insights.For instance, contacting ambulance services was not considered an "easy", default option for all seizures as intimidated elsewhere [13].Reassuringly, participants also all reported an awareness that seizures in individuals with established diagnoses exceeding 5 min should generally have an ambulance called for them.However, they also identified systemic and organizational factors which meant ambulances could be sought for persons who clinically did not require them.
The absence of meaningful action plans was one.Plans were deemed crucial guides, especially for staff unfamiliar with residents due to high turnover and reliance on agency staff [14].However, homes often developed them with limited assistance and information.Specialist services could play a vital role in supporting homes to improve the content and coverage of these action plans [15].
Our study revealed challenges in facilitating care home residents' access to input from seizure specialists.Further investigation into the transferability of these findings to different countries is warranted.Notably, evidence suggests disparities in the referral of older individuals to seizure specialists across many countries, particularly for those not previously known to them [16][17][18].Focus group participants proposed medical professionals' attitudes and appointment logistics as barriers, consistent with some broader literature [19].Seizure specialists should conduct audits of their referrals to assess potential under-referrals from care homes and consider remedial actions.
About 11 % of care home sites in England have both a part offering nursing care and a part offering residential care only [8].Participants reported frustration at nursing staff not being able to assist residents in non-nursing part of home when suspected seizures occurred.They said it led to theoretically unnecessary ambulance calls.The oddities of the boundary between homes providing nursing and non-nursing services has been highlighted before more broadly.Our study provides a granular example of its potential implications.It should be addressed.

Strengths and limitations
This study is transparently reported, in line the Standards for Reporting Qualitative Research [20].Other strengths include the host of strategies enacted to maximise rigor and trustworthinessincluding two people independently coding the data to help ensure themes and conclusions flowed from the data.The study is not though, without limitations.Despite multiple pathways, and using evidence-based recruitment incentives, we underrecruited and did not reach saturation on many themes.Further studies are clearly needed.Such studies should address limitations with our sample.One group not represented within it was agency-based care home staff.Some participants were also recruited via a 'research ready' register of care homes.Homes engaged with such networks may differ in important, yet currently unknown, ways to homes that are not.Sampling for future studies should also better account for home ownership.Emerging evidence, for instance, suggests private equity owned care homes have higher emergency contact rates [21].
Research in care homes has been labelled 'mission impossible' due to factors like the lack of a strong research tradition and high workloads [22].However, it is increasingly crucial for the global epilepsy community to engage with them.Sharing experiences, like those outlined here, is vital for collective learning and recruitment improvement.Despite leveraging existing infrastructure, our methods proved insufficient and our sample size was small.Insights from participants on enhancing recruitment were limited.Additional infrastructure may be necessary.The "Living Lab in Ageing and Long-Term Care" model [23] pioneered in the Netherlands is receiving increasing attention and could be transformative.

Conclusions
Our study has uncovered systemic and organizational factors that may contribute to frequent ambulance service contacts and suboptimal support for care home residents.Further research, using enhanced recruitment strategies, is needed to delve deeper into these issues and develop effective interventions.

Disclaimer
The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the University of Liverpool, Epilepsy Action, the National Institute for Health Research, or the Department of Health and Social Care.

Fig. 1 .
Fig. 1.Schematic illustrating recruitment methods for focus groups a, b Notes NIHR ENRICH Network, National Institute for Health Research 'ENabling Research In Care Homes Network'; Managers Network, Skills for Care Registered Managers Network Directory; DNA, Did Not Attend; No., Number of people.a Summary of recruitment flow:Total number of enquiries received: 51; Total number not eligible: 2; Total number who recused themselves from participation as unable to attend on focus group available dates: 2; Total number who did not respond to follow up 21; Total number booked in: 26; Total number booked in who did not attend: 13; Total number who attended a focus group: 13 b ENRICH is an initiative described as being a network of care homes in England who have indicated their willingness to be contacted about and involved in research ('Research Ready Care Homes'; for further details, see: https://enrich.nihr.ac.uk/).

Table 1
Additional illustrative quotes of some key themes a services I do think could be a little bit better to save it from us having to do all that chasing."(P3, female, nurse) "Often it's down to the nurse or you, you know your line manager back at

Table 1
B. Morris et al.