- •Epilepsy Specialist Nurses provide a range of service and clinical roles.
- •They are central to empowering people with epilepsy to self-manage their illness.
- •They require support to increase their competence around mental health morbidities.
- •They need to include strategies on how to disclose a diagnosis of epilepsy to others.
- Mameniskiene R.
- Sakalauskaite-Juodeikiene E.
- Budrys V.
- Sample P.L.
- Ferguson P.L.
- Wagner J.L.
- Pickelsimer E.E.
- Selassie A.W.
- Hermann B.
- Jacoby A.
- Smithson W.
- Hukins D.
- Kirton J.A.
- Jack B.A.
- O’Brien M.R.
- Roe B.
- Stephen L.J.
- Maxwell J.A.N.
- Brodie M.J.
- Helde G.
- Bovim G.
- Bråthen G.
- Brodtkorb E.
- Kengne A.P.
- Fezeu L.L.
- Awah P.K.
- Sobngwi E.
- Dongmo S.
- Mbanya J.C.
- Noble A.J.
- Morgan M.
- Virdi C.
- Ridsdale L.
- Pfäfflin M.
- Schmitz B.
- May T.W.
- Higgins A.
- Downes C.
- Varley J.
- Tyrell E.
- Normand C.
- Doherty C.P.
- et al.
- Higgins A.
- Downes C.
- Varley J.
- Tyrell E.
- Normand C.
- Doherty C.P.
- et al.
2.2 Study sites
2.3 Data collection
|Interview schedule (ESN and Members of the MDT)|
|Observation schedule (ESN)|
|Focus group schedule (PWE and Family)|
|Data collection method|
|Epilepsy Specialist Nurses|
Gender: Female = 12
Employment status: full time = 10; part time = 2
Time in current role: Mean = 5.42 years (SD = 5.69)
Time working in epilepsy = Mean = 10.42 years (SD = 6.02).
Role profile: Registered ANP1s = 2; Candidate ANPs = 5; CNS1 = 5;
Prescriber of Medicinal Products = 7
Completed or completing Master Degrees (Epilepsy) = 8,
Diploma/Postgraduate Diploma/Certificate in Epilepsy = 8
61 hours of observation
|Directors of Nursing/ Assistant Directors = 5|
Medical Consultants = 6
Clinical Nurse Managers = 2
Allied Professionals = 11
|People with epilepsy = 21|
Inclusion criteria: i) physically well enough to take part; ii) able to give informed consent; and iii) hold a conversation in the English language
Family members/carers = 14
Inclusion criteria: i) able to give informed consent; and ii) hold a conversation in the English language.
|Focus groups x 5|
|Role descriptions, portfolios, committee membership, education or curriculum activity, guideline developed, research/audit||Documents|
2.5 Data analysis
2.6 Ethical considerations
3.1 Range of services provided
3.2 Completing comprehensive assessment of needs to inform care and treatment (Theme A)
|Theme A: Completing comprehensive assessment of needs to inform care and treatment|
|A1||I [ESN] use the EPR [epilepsy-specific Electronic Patient Record] as my guide because it’s [EPR] very encompassing… move through their epilepsy history, how frequent their seizures are… look at anything else going on, provoking factors in their life that might make their seizures worse. (ESN interview)|
|A2||ESN does a detailed seizure history of last seizure, presence of warning, duration, time (night/day), feeling, photosensitivity; to help patient answer on triggers give examples of possibilities e.g. tiredness, stress. (ESN observation)|
|A3||ESN introduced herself as this was her first time meeting the patient in person. ESN confirmed a number of details including, GP, medication regime, recent seizure activity, epilepsy history, family history, childhood illness history, trauma history, birth history. (ESN observation)|
|A4||You'd talk about sleep, exercise, diet, different things about their lifestyle. (ESN interview)|
|A5||ESN asks about general health history including asthma, hypertension, sleep, explains that monitoring bone health is part of [ESN] role. (ESN observation)|
|A6||What they’re doing with themselves, are they living on their own, are they in college or are they working, driving make sure you’ve discussed those support issues with them.” (ESN interview)|
|A7||Some people struggle with how they developed epilepsy…it's kind of like a post-traumatic stress… some people find it very hard or maybe just in denial, but you would ask and talk about coping strategies.” (ESN interview)|
|A8||Psychological issues, how are they getting on, mood, any memory problems, you have to consider all of those aspects every time you have that clinical encounter. (ESN interview)|
|A9||You have somebody who’s drinking too much, or you’ve someone that’s taking drugs that would affect their seizures. (ESN interview)|
|A10||Particularly teenagers, young adults, drug abuse, they’ll tend to admit it more as we [ESNs] tease things out … you have to ask about that. (ESN interview)|
|A11||Does a detailed seizure history with parents (son has ID). Asks about seizure types, changes in seizure frequency, medication dosage, compliance, side-effects, quality of life (alertness, communication). ESN asks focused questions and translates technical terms into lay terms with examples to help family identify seizure type. (ESN observation)|
|A12||Does detailed history of when symptoms appeared (drowsiness, drooling) as she [ESN] is trying to get a picture if some of the patient’s symptoms is related to seizure activity, the medication prescribed, or something else. To help she names each drug and the side-effects and questions about each drug’s side-effects separately. (ESN observation)|
|A13||When person rings the TAL] we …go into the nitty gritty of why this [increase in seizures] is happening, is it something new, how long, have they missed medications, are they good at taking medications, have they any infections or any other reasons for causing increased seizure activity.” (ESN interview)|
|A14||When you get a call, you have to triage call, you have to make sure that this person doesn’t need to be dealt with immediately. Can you wait for the GP? Can they wait to come in for an appointment? Do they need to go to casualty? So you are constantly making sure you don’t miss something.” (ESN interview)|
|A15||We see a lot of the patients [PWE] who have learning disabilities, severe learning disability, associated behavioural disorders, and it can be very tricky trying to tease out is it the medication, or is it seizures, or something else that is making it difficult for them [PWE]… and the nurses [ESNs] are particularly good at teasing those things out…” (Medical Consultant interview)|
|A16||They [ESNs] know the formal support networks, the informal support networks … family stressors, other dynamics happening in a family that might impact on their epilepsy and until you get to know a patient you’re not going to know those things (Allied health professional interview)|
|Theme B: Providing person-centered education to empower PWE towards self-management|
|B1||You are there to enhance and improve their knowledge of their condition and how to manage it…Our [ESN] responsibility is ensuring that they know everything about epilepsy, about seizures, how to identify seizures, the risks, know about all about their medication, when and how to take them, possible side-effects, the importance of compliance, rescue medication.” (ESN interview)|
|B2||They need to know if they have a side-effect not to jump straightaway and stop taking the medications because that could cause rebound seizures. (ESN interview)|
|B3||You want people to lead as normal a life as possible but there is some changes that they’ll have to make, like driving or occupational changes….. You’d also talk about alcohol, swimming, safety and how to protect a baby. (ESN interview)|
|B4||[ESN] informs patient of driving regulation, also discusses his recent stroke and motor ability. ESN explains that he will need a driving assessment done as it is not just the epilepsy that is the issue but also the physical weakness and motor ability. (ESN observation)|
|B5||ESN discusses safety precautions with a patient (82 years old very active man accompanied by his wife). Her discussion centres on baths, ladders and garden safety. (ESN observation)|
|B6||ESN discussed lifestyle implications with patient [young male]; focuses on socialising and alcohol, the importance of sleep and how to manage stress. (ESN observation)|
|B7||ESN rang me recently and said, do you want me to have a chat with [names daughter] about contraception. I said, yes you do it. …I know if I mention anything [about contraception] she’s, ‘uh, please!’. Whereas, she’d [daughter] chat to her [ESN]. (FM focus group)|
|B8||Education in pregnancy is a big thing, we go through everything. A lot of the concern would be the medicines…and the potential harm for that baby… some medications can be teratogenic to the unborn… one big question is ‘will I have a seizure in labour?’ so it might take an hour the first time you discuss with a woman… you give them written information to read as well. (ESN interview)|
|B9||ESN discusses work with a woman who recently commenced a job after long period of unemployment. The woman is anxious about the impact of medication on her memory. ESN discusses this and explores how stress and anxiety can exacerbate memory issues. ESN also discusses contraception as woman is currently in a relationship, they discuss the option of an IUD and ESN gives information on the pros and cons of having IUD inserted, procedure for insertion, and provides information on a local woman’s clinic. (ESN observation)|
|B10||I had surgery. Before I had it I went through loads of tests. The girls [ESNs] explained all the tests and gave me confidence. (PWE focus group)|
|B11||Part of our role is being there for the patient, helping them understand why they’re getting more regular blood tests (ESN interview)|
|B12||ESN explains the role and function of the EPR to patient and his wife. ESN also gives them an information leaflet on the EPR to take home and read. (ESN observation)|
|B13||Depending on need, you tell PWE about Epilepsy Ireland, linking them in to brain injury services. It’s constant education, there’s a new Epilepsy Ireland toolkit available to people, engage them with that and the local services. (ESN interview)|
|B14||ESN is a source of information for community supports other than epilepsy. ESN provides advice re accessing the community OT and physiotherapy as patient [who is in a wheelchair] would like to get a wheelchair that is easily transported in the car. (ESN observation)|
|B15||They [ESNs] understand the surgery, the benefit of surgery, how the surgery happens, ….so when the decision for surgery is made at the conference [MDT discussion]… she [the ESN] takes over, and communicates with the patient… explains about surgery, help them with that decision-making process… puts the things in process whereby they are prepared for surgery. But it is deeper than that, she creates the mental and psychological environment to support the patient to accept that decision and go forward for surgery. (Medical Consultant interview)|
|B16||ESN visits patient in ward who is post-surgery. She explains to the woman that she doesn’t want her to worry when dressing is removed and wants her to be aware that swelling will be present, and what it feels like to the touch. She supports the woman to gently touch the area and feel the swelling that is currently present and note what it feels like when touched, suggesting that it feels spongy to touch. Also talks to her about the colour of the scar and what to expect in the next few days. Gives her time to ask questions and answers questions slowly checking the woman understanding. Sits closely, touching her arm gently, reassuring her continually. Also leaves written information leaflet about postoperative experience that she and colleague has developed. (ESN observation)|
|B17||Sometimes there is a risk that patients become dependent. Instead of making a decision themselves or planning themselves they run absolutely everything by the epilepsy nurse. So that’s a balance. On the whole I think self-management is really important … I think epilepsy nurses encourage people to be self-manage their disease but there is a risk that we encourage patients to become very dependent on us.(ESN interview)|
|B18||They [ESNs] are a huge knowledge reservoir and a huge support to people with epilepsy and their families. (Medical Consultant interview)|
|B19||She [the ESN] came over to the house. Spent a couple of hours answering all my questions and informing me, what was normal and what wasn’t. I found that very very helpful. (PWE focus group)|
|Theme C: Systematic monitoring of impact of care and treatment|
|C1||You need to monitor the seizure frequency since they were last at the clinic or since the last medication change, has seizure frequency changed, if so how many, the duration, the intensity. (ESN interview)|
|C2||[names ESN] is full-time checking, ringing me, checking is the medication suiting me, listening to me. Making sure my seizure diary is complete (PWE focus group)|
|C3||The consultation is a telephone follow-up on a recent OPD visit. The ESN has a conversation with the mother of patient with ID about AEDs and the impact of recent changes. The change has reduced seizure activity but the patient has developed gastrointestinal upset. As the ESN explores and asks questions it becomes apparent that the gastrointestinal upset has pre-dated the change. The ESN goes into detail about the objectives of the treatment and long-term goals, and need to conduct a risk versus benefit examination in respect of ‘side-effects versus seizures’. Explains potential treatment options to the patient based on her knowledge of the patient, her knowledge of AED therapy and advises the patient’s mother re GIT upset and informs her that a letter will be sent to the patient’s GP to make suggestions for follow-up. (ESN observation)|
|C4||I would do is a neuro assessment for the side-effect profile of the medication so I'd go through like any tremor, check their gait, check their pupils, any nystagmus.” (ESN interview)|
|C5||ESN completes a neurological assessment (hand tremor, heel to toe walking). Explains that it is to check for toxicity of medication. Checks chart to check if liver function tests have been done recently. Bloods not done recently so gives choice to patient, return to GP or get test done in hospital today. (ESN observation)|
|C6||ESN explains to patient that her tremor may be a side-effect of her medication, suggests that they do a blood test to check blood levels of the drug. ESN explains to patient the reason for the test and what it may tell her. (ESN observation)|
|C7||ESN discuses blood serum levels of AED and discusses with the patient the rationale for increasing her medication. The patient agrees with this and they have a further discussion of how, when and why the patient should get a repeat blood serum level done. (ESN observation)|
|Theme D: Providing education to family members and significant others to promote confidence to self-manage|
|D1||My mother was shown how to give [names rescue medication] to me (PWE focus group)|
|D2||ESN goes through procedure for giving rescue medication with husband (wife is post- surgery), so he knows what to do if required in an emergency and who to contact (ESN observation)|
|D3||They (parents) need to know what a seizure looks like, because they keep the records, so we put effort into teaching them. (ESN interview)|
|D4||When there is an uncertain around diagnosis, the [ESN] advices the partner or the sister or the mother to video [what they see] on their phone, because it is the sister or the mother that sees something, so that if there is something going on, and it is uncertain that is advice she (ESN] will give… they need to know what to do … they need to know what are the things to be watching out for, that could lead to an intervention or prevents something significant.” (Medical Consultant interview)|
|D5||She’s [ESN] giving me tools to deal with my child…she enables you to cope…she gives you the confidence and the reassurance that you can help your child [when he has seizure]. Whereas, your consultant tells you he should be on X, Y, Z drugs. These might be the side-effects, they might keep the seizures away. very medically based. The nurse has a dual affect, she has the knowledge medically but she also helps you cope. (FM focus group)|
|D6||They [ESN] educate parents… spend the time as they're the person that reassures the child if they have a seizure and they're the point of contact if the child is having problems in school because he's had seizures, so they’re counselling the parents (DoN interview)|
|D7||The relationship they’ve built up with the child and the parent means they are well placed to influence the parent to start letting go, start giving the child more responsibility around managing their epilepsy in the context of normal adolescence. (DoN interview)|
|D8||Patient (young man with ID) had VNS inserted recently. ESN explains to patient and parents what this is and how it works, She involves patient and giving time to parents to ask questions. Explains to parents and patient the procedure she is going to use to activate the device. Ensures they have understanding before proceeding, …goes through the ‘does and don’ts’ of using the device and explores with them when they think is the best time to give a ‘booster dose’ based on seizure times. Reassures family that if anxious to ring the TAL and she or a colleague will ring back and go through any concerns they have so they don’t have to travel if at all possible. Reassures them that she will be in a position to assess if they need to visit clinic. (ESN observation)|
|Theme E: Providing psychosocial care to optimise psychological wellness of person and family|
|E1||The nurses [ESNs] are the people who pick up a lot of the psychological difficulties… they’re [ESNs] the ones who are on the phone on a very regular basis… they’re the ones at the coal face. That would be identifying any behavioural, emotional, or cognitive difficulties, they’re [ESNs] talking to the parents [of children with epilepsy] on a very regular basis and they know the patients really well. (Allied health professional interview)|
|E2||I thought my child was going to die… so I needed to speak to someone … somebody who’s got that knowledge and can calm you down… the most important thing for me was getting to speak with [names ESN]. (FM focus group)|
|E3||ESN [on TAL to a male patient] discusses medication and seizure history, which leads into a discussion about patient commencing third level education in the next week. Asks about his fears and explores anxieties, and reassures him that he can contact her to talk at any time. (ESN observation)|
|E4||They [ESNs] see patients where it may be more important to discuss psycho-social issues with the patient [PWE] or with the relative that are not to do with the diagnosis or to do with the specific treatment, but they impact… I think the nurses are fantastic with this. (Medical Consultant l interview)|
|E5||She sent me to counselling to try and help me through [crisis in life and suicide thoughts]…but she also helped me to come to terms with being diagnosed [with epilepsy] … because I was in the middle of college and then being diagnosed, just in exam period time. (PWE focus group)|
|E6||We[ESNs] do a lot with psychiatry. There is a big over-lay with psychiatry in epilepsy …so we would get onto the GP, arrange for urgent psychiatric involvement, while we don’t directly refer …we have often typed letters, got [neurology consultant] to sign it and faxed it to the [psychiatric] consultant or the GP or the child and adolescent mental health services. (ESN interview)|
|Theme F: Co-ordinating care and care-pathways to enhance patients’ journey|
|F1||The epilepsy nurses have an almost trans-disciplinary function, knowing what everybody does, and what everybody can contribute. (Allied health professional interview)|
|F2||Because of her knowledge of how the epilepsy system works, and knowing nurses in [names hospital around the country] she is able to ease the pathway of information between us and the primary epilepsy medical carer and vice versa….She [ESN] has the phone numbers, the contacts, she’s meeting these people on an ongoing basis, so any of the really problem cases, she is able to provide a conduit for multidisciplinary care. (Medical Consultant interview)|
|F3||The team is changing, there’d be a different registrar, and there’ll be a different SHO… so [by having the ESN] you’re not talking to somebody different all the time. (PWE focus group)|
|F4||When problems arise the ESN they can pick up the phone and speak to the neurologist, so patient care, or changes in seizure behaviour is brought to the neurologist’s attention sooner and then it can be acted upon. (DoN interview)|
|F5||[ESNs] decide to have the VNS clinic for people with ID at the beginning of the general epilepsy clinic to minimise travel and waiting time for PWE and ID. As a consultant is present for the epilepsy clinic and if patient coming to the VNS clinic require a medication review that requires consultant input it can happen on same visit. Thus PWE and families are saved from having to have 2 separate visits, and having to take extra time off [work]. (ESN observation)|
|F6||Patient is due into hospital for a scan – [ESN] also organises blood test and ECG forms and leaves at reception for [patient] to collect so can have test all done all on the one day, this prevents patient having to return to hospital on another occasion. [ESN] phones patient to tell her about leaving forms for blood test, ECG, and [her contact] phone number at reception (ESN observation)|
|F7||When patients come in through ED with the presentation of a seizure … ED staff can call us, we’ll come down and liaise with the registrar…it helps the flow of the patient either they are admitted or discharged. (ESN interview)|
|F8||The ESNs liaise with us [intellectual disability services] in relation to tracking different people’s seizures, and then they liaise with the neurologist with regard to the medications…[ESNs] are able to tell us from thee information we give them, whether they [PWE} need a sooner appointment or send us down prescriptions. (Allied health professional interview)|
|F9||ESN suggests a neuro-psychology referral to a specialist neurology centre [for a patient who had developed epilepsy following head trauma from fall]. ESN prepares the letter for referral following the consultation. (ESN observation)|
|F10||They’ve [ESNs] got more involved with the smoother transition of children from paediatric services into adult services and that is very much nurse-led.o” (DoN interview)|
|F11||[ESN] wrote letter to the patient’s GP to ask that he/she organise a Dexascan locally, so patient did not have to travel a long distance. (ESN observation)|
|F12||I rang [ESN] - [name of child] had a seizure in school. Within an hour, there was a new prescription being faxed to the pharmacy. (FM focus group)|
|F13||We’re [ESN] dealing with people with very complex issues … trying to see which way you can signpost or direct them to the right services … because they come with all sorts of problems that might not be related to epilepsy… so you refer them back to either their GP or direct people to Epilepsy Ireland, the voluntary organisations, link them in to brain injury services. (ESN interview)|
|Theme G: Quality assuring patient information recorded|
|G1||Explains about EPR and reassures patient about confidentiality. Explains that she needs to double check other information to make sure letters are going to the GP’s correct address. (ESN observation)|
|G2||I want to make sure the patient is still at the same address, that this is still their phone number, making sure that I have all those details, they still with that GP.(ESN interview)|
|G3||It’s important that you go through and check the investigations, is there any outstanding tests, has any test been missed, you go through the medications to make sure that there’s no mistakes [in recording], because you can find mistakes or things missed. (ESN interview|
3.3 Providing person-centered education to empower PWE towards self-management (Theme B)
3.4 Systematic monitoring of impact of care and treatment (Theme C)
3.5 Providing education to family members and significant others to promote confidence (Theme D)
3.6 Providing psychosocial care to optimise psychological wellness of person and family (Theme E)
3.7 Co-ordinating care and care-pathways to enhance patients’ journey (Theme F)
3.8 Quality assuring patient information recorded (Theme G)
- Hopkins J.
- Irvine F.
- Krska J.
- Curran A.
- Stokes L.
- Halsall S.
- et al.
- Hopkins J.
- Irvine F.
- Krska J.
- Curran A.
- Stokes L.
- Halsall S.
- et al.
- Noble A.J.
- Morgan M.
- Virdi C.
- Ridsdale L.
- Mameniskiene R.
- Sakalauskaite-Juodeikiene E.
- Budrys V.
- Scottish Intercollegiate Guidelines Network (SIGN)
- Mahendran M.
- Speechley K.N.
- Widjaja E.
- Bennett L.
- Bergin M.
- Wells J.S.G.
- Kirton J.A.
- Jack B.A.
- O’Brien M.R.
- Roe B.
- Epilepsy Nurse Specialist Association (ENSA)
Role of the funding source
Conflicts of interest statement
- People with epilepsy lack knowledge about their disease.Epilepsy Behav. 2015; 46: 192-197https://doi.org/10.1016/j.yebeh.2015.03.002
- Epilepsies: diagnosis and management. Clinical guideline.NICE, London2012
- Experiences of persons with epilepsy and their families as they look for medical and community care: a focus group study from South Carolina.Epilepsy Behav. 2006; 9: 649-662https://doi.org/10.1016/j.yebeh.2006.08.009
- Epilepsy in our world: stories of living with seizures from around the world.Oxford University Press, New York2008
- The psychosocial impact of epilepsy in adults.Epilepsy Behav. 2009; 15: S11-S16https://doi.org/10.1016/j.yebeh.2009.03.029
- Identifying the strengths and weaknesses of epilepsy care in general practice – a case note review.Prim Health Care Res Dev. 2008; 9: 291-298https://doi.org/10.1017/S1463423608000844
- Care of patients with neurological conditions: the impact of a Generic Neurology Nursing Service development on patients and their carers.J Clin Nurs. 2012; 21: 207-215https://doi.org/10.1111/j.1365-2702.2010.03684.x
- Improved availability and quality of care with epilepsy nurse practitioners.Neurol Clin Pract. 2017; 7: 109-117https://doi.org/10.1212/CPJ.0000000000000337
- Newly diagnosed epilepsy: can nurse specialists help? A randomized controlled trial. Epilepsy Care Evaluation Group.Epilepsia. 2000; 41: 1014-1019
- What do patients want and get from a primary care epilepsy specialist nurse service?.Seizure. 2002; 11: 176-183
- How can a nurse intervention help people with newly diagnosed epilepsy? A qualitative study (of patients’ views).Seizure. 2002; 11: 1-5
- Outcomes from a nurse-led clinic for adolescents with epilepsy.Seizure. 2003; 12: 539-544https://doi.org/10.1016/S1059-1311(03)00067-0
- A structured, nurse-led intervention program improves quality of life in patients with epilepsy: a randomized, controlled trial.Epilepsy Behav. 2005; 7: 451-457https://doi.org/10.1016/j.yebeh.2005.06.008
- Nurse-led care for epilepsy at primary level in a rural health district in Cameroon.Epilepsia. 2008; 49: 1639-1642https://doi.org/10.1111/j.1528-1167.2008.01580_2.x
- A nurse-led self-management intervention for people who attend emergency departments with epilepsy: the patients’ view.J Neurol. 2013; 260: 1022-1030https://doi.org/10.1007/s00415-012-6749-2
- Efficacy of the epilepsy nurse: results of a randomized controlled study.Epilepsia. 2016; 57: 1190-1198https://doi.org/10.1111/epi.13424
- Care delivery and self management strategies for adults with epilepsy.Cochrane Database Syst Rev. 2016; 2CD006244
- Patients with epilepsy care experiences: comparison between services with and without an epilepsy specialist nurse.Epilepsy Behav. 2018; 85: 85-94https://doi.org/10.1016/j.yebeh.2018.05.038
- The nurse’s role in achieving optimal epilepsy management.Community Nurse. 2000; 6: 34-35
- The role of primary care nurses in the review of stable epilepsy.Nurs Times. 2004; 100: 38-41
- Clinical nursing in adult epilepsy.Axone. 2005; 26: 31-34
- Epilepsy nurse specialists are a vital resource.Lancet Neurol. 2012; 11: 390-391
- The role of the clinical nurse specialist in epilepsy. A national survey.Seizure. 2004; 13: 87-94
- Quantifying the role of nurse specialists in epilepsy: data from diaries and interviews.Br J Neurosci Nurs. 2006; 2: 239-246
- Qualitative insights into the role and practice of epilepsy specialist nurses in England: a focus group study.J Adv Nurs. 2012; 68: 2443-2453
- Evidence-based practice among Epilepsy Specialist Nurses in Ireland: findings from the SENsE study.J Nurs Manag. 2019; 27: 840-847
- Rising to the challenge: epilepsy specialist nurses as leaders of service improvements and change (SENsE study).Seizure: Eur J Epilepsy. 2018; 63: 40-47
- The national clinical programme in epilepsy care in Ireland.HSE, Dublin2014
- Identifying and monitoring the cost-effectiveness of the epilepsy specialist nurse.Leeds: Epilepsy Action. 2010;https://www.epilepsy.org.uk/sites/epilepsy/files/images/campaigns/ss-of-epilepsy-specialist-nurse-final-report.pdf
- Managing long term conditions and chronic illness in primary care.2nd ed. Routledge, London2016
- Promoting self-care in epilepsy: the views of patients on the advice they had received from specialists, family doctors and an epilepsy nurse.Patient Educ Couns. 1999; 37: 43-47
- The health care journeys experienced by people with epilepsy in Ireland: what are the implications for future service reform and development?.Epilepsy Behav. 2011; 20: 299-307
- The complex epilepsy patient: intricacies of assessment and treatment.Epilepsia. 2003; 44: 3-8
- The prevalence of psychosis in epilepsy: a systematic review and meta-analysis.BMC Psychiatry. 2014; 14: 75
- An easily performed group education programme for patients with uncontrolled epilepsy–a pilot study.Seizure. 2003; 12: 497-501
- Cross-cultural differences in levels of knowledge about epilepsy.Epilepsia. 2003; 44: 115-123
- A systematic overview-a decade of research’. The information and counselling needs of people with epilepsy.Seizure. 2001; 10: 605-614
- Psychoeducational programs for patients with epilepsy.Dis Manag Health Outcomes. 2005; 13: 185-199
- The information needs of carers of adults diagnosed with epilepsy.Seizure. 2004; 13: 499-508
- Knowledge of and attitudes expressed toward epilepsy by carers of people with epilepsy: a UK perspective.Epilepsy Behav. 2007; 11: 13-19
- Knowledge and information needs of young people with epilepsy and their parents: mixed-method systematic review.BMC Pediatr. 2010; 10: 103
- Diagnosis and management of epilepsy in adults.([Updated 2018]. Available from URL) SIGN 2015 (SIGN publication no. 143), Edinburgh2018
- Advances in epilepsy management: the role of the specialist nurse.Nurse Prescr. 2011; 9: 131-135
- Becoming comfortable with “MY” epilepsy: strategies that patients use in the journey from diagnosis to acceptance.Epilepsy Behav. 2017; 70: 217-223
- Systematic review of unmet healthcare needs in patients with epilepsy.Epilepsy Behav. 2017; 75: 102-109https://doi.org/10.1016/j.yebeh.2017.02.034
- The social space of empowerment within epilepsy services: the map is not the terrain.Epilepsy Behav. 2016; 56: 139-148https://doi.org/10.1016/j.yebeh.2015.12.045
- Towards an evaluation of the effectiveness of an epilepsy nurse in primary care.Seizure. 1996; 5: 225-228
- Effects of the acute care nurse practitioner role on epilepsy monitoring outcomes.Outcomes Manag Nurs Pract. 1999; 3: 161-166
- The adult epilepsy specialist nurse competency framework.(Retrieved from)2012https://www.epilepsy.org.uk/sites/epilepsy/files/professionals/competency_frameworks/ESN_Adult_Competency_Framework.pdf
- Framework for the establishment of clinical nurse/ midwife specialist posts.NCNM, Dublin2008
- Framework for the establishment of advanced nurse practitioner and advanced midwife practitioner posts.NCNM, Dublin2008
User LicenseElsevier user license |
For non-commercial purposes:
- Read, print & download
- Text & data mine
- Translate the article
- Reuse portions or extracts from the article in other works
- Redistribute or republish the final article
- Sell or re-use for commercial purposes
Elsevier's open access license policy