Key learning points:
– Group interventions in the community for people with seizures are practical and can be implemented within resources
– Raise awareness of epileptic and non-epileptic seizures in individuals
– Interventions also give the opportunity for nurses to achieve a positive alliance with seizure patients and pay attention to their health
Epilepsy is a chronic and debilitating health condition that is characterised by recurrent, unpredictable and usually unprovoked seizures or ‘fits’. Seizures are caused by transient disequilibrium of the cerebral excitatory and inhibitory mechanisms that cause an excessive neuronal discharge.1 Epilepsy is a widespread health condition, affecting approximately 50 million people worldwide1 and 400,000 people in England.2 Epilepsy can start at any age and two or more seizures are required for formal diagnosis.
Nurses working in the community may come across people with seizure conditions in addition to complex lifestyle problems. This article describes different seizure types, and gives an example of a helpful intervention which has been applied in a community health clinic.
Types of seizures
The classification of seizures is complicated and several different seizure types have been identified.3 Seizures are typically classified into two categories: generalised and focal; and are divided into idiopathic, cryptogenic and symptomatic etiological domains. Idiopathic and cryptogenic seizures are the most common types, affecting approximately six out of 10 people. They have no identifiable causes, but may have an underlying genetic basis.1,3
Symptomatic seizures are caused by a disturbance of the central nervous system such as brain damage from prenatal or perinatal injuries, infections (eg, meningitis and encephalitis), congenital abnormalities or genetic conditions associated with brain malformations, acquired brain injuries or strokes.1
Psychogenic non-epileptic seizures
Psychogenic non-epileptic seizures (PNES) are the most common differential diagnosis of seizures and present a serious diagnostic challenge to physicians.4 The prevalence of PNES is between two to 33 individuals per 100,000.5 PNES are characterised as episodes that superficially resemble epileptic seizures, reflecting a range of motor, sensory and mental manifestations, but are not caused by epileptic discharges in the brain.4 PNES represent experiential or behavioural responses that are beyond voluntary control.6
Lifestyle impact of epileptic and non-epileptic seizures
In general practice one can observe the disabling impact of seizure disorders leading to a disruption of social, cognitive, psychological, physical, and interpersonal domains. The literature reports that individuals with seizures present with high levels of unemployment, chronic severe health and mental health problems, including increased suicide risk, as well as reduced physical activity.6,7 Lower rates of marital and social status have also been reported for people with epilepsy.8 PNES patients are frequent attenders in general practice and their prognosis is considered poor. Only one-third of patients achieve seizure freedom and improvement of the condition may not result in better occupational outcomes.9,10 A long pre-diagnosis history is associated with psychiatric comorbidity, additional unexplained symptoms, dysfunctional relationships and low educational attainment.11,12,13
The National Institute for Health and Care Excellence (NICE) guidelines2 recommend holistic interventions such as relaxation, cognitive behavior therapy (CBT) and biofeedback in conjunction with pharmacological therapy. Nevertheless, evidence for the usefulness of holistic and non-pharmacological interventions to manage epileptic and non-epileptic seizures is only just emerging.14,15,16 A shift from using medical to biopsychosocial understandings of the complex interplay of factors that impact on the person’s wellbeing and functioning has been noticed in general practice in recent years. Epileptic and non-epileptic seizure conditions are described by an underlying biological predisposition, which is triggered by prolonged stressful experiences and environmental factors. A growing body of evidence indicates that chronic stress has a direct impact on the cardiovascular, nervous, and immune systems, which leads to increased susceptibility to a range of diseases.17,18 Lifestyle factors such as poor diet, lack of exercise or substance misuse are additional risk factors for chronic illnesses.17,18
Health and lifestyle groups for people with seizures
The local health services in Poole, Dorset, have expressed more interest recently in holistic interventions offered by community neurological rehabilitation teams. This has led to a higher demand for individual and group support for people with seizure conditions. Health and lifestyle groups had already been an integral part of the community rehabilitation services in the past. Due to the high demand, the group intervention was tailored for people with seizures. Patients with epileptic and/or non-epileptic seizures were referred to the community health clinic by their general practitioners, epilepsy nurses or neurologists, so that they could take part in this intervention. Besides their conditions, it had been noticed that these individuals presented with unhelpful lifestyle choices (eg, alcohol and tobacco use, lack of exercise, hectic schedules, lack of healthy sleep routines etc), which is commonly seen in healthcare.18 Practice nurses may be aware of patients who also report comorbidities as heart disease, stroke or mental health difficulties and may suggest a weaker biological predisposition to illness. The Health and Lifestyle Group in Poole aimed to address the complex interplay of the presenting difficulties in epileptic and non-epileptic attacks. The intervention included: an initial meeting and assessment, a four-week health and lifestyle group and Individual follow-up.
Initial meeting and assessment
The initial interview has been very similar to a first meeting with a patient, which is also common in nursing practice. It focused on exploring the impact of the seizures on the person’s everyday functioning as well as finding out information about the age of onset, identified triggers, frequency and severity of seizures. Individual coping strategies and goals for the group intervention were also elicited. The aims of the group were described, in order to alleviate potential worries about attending an intervention with others. Such discussions can help practice nurses to explore whether patients perceive being stigmatised or experience substantial embarrassment associated with having fits. Participants completed a set of questionnaires that allowed further insight into the extent of their difficulties and also their use of coping strategies. Such questionnaires and their results can be very useful tools for nurses as they enable detailed conversations about patients’ individual difficulties.
Participants either presented with epileptic and/or non-epileptic seizures. Each person reported varying degrees of emotional distress. Two people had a mental health condition and received additional support from the community mental health team. It was reported during the initial meeting that all participants experienced raised levels of anxiety or depression, and one person reported both. Furthermore, they indicated difficulties in some areas of emotional processing. These were mainly in emotional suppression, unprocessed emotion and unregulated emotion. Nurses observing such results should be mindful of co-morbid mental health and emotional difficulties in addition to the medical conditions, as observed in this cohort. On exploring the impact of and beliefs about their conditions, the participants rated how much their overall quality of life (QoL), emotional wellbeing and social functioning being negatively affected by their condition. Interestingly, seizure worry did not seem to impact on QoL, even though none had achieved seizure freedom. The common picture was that reduced social functioning was adversely impacted by participants’ seizure condition, whereas general health was reported to be the same for people without seizures.
Four-week health and lifestyle group
A group size of six to eight participants was decided upon. This is as it fit with the practical resources of the health clinic and catered for the needs of socially anxious people who might worry about having a seizure during the intervention. Most of the referred participants reported to have been affected by complex physical and emotional experiences in addition to negative lifestyle factors, such as stress, anxiety and depression as well as tiredness. All problems are commonly seen by nurses in healthcare practices. Therefore, the main aim of the group was to practice relaxation skills to reduce physiological levels of stress. This program actively introduced participants to health management strategies such as pacing, and a graded increase of activities. The focus was on utilising resources and optimising healthy behaviours, not to expect seizure reductions or a cure. The health and lifestyle program was adapted from a standardised manual by Gurr (see Resources). Four 90-minute sessions began by welcoming participants, reiterating group expectations (confidentiality, respect), followed by an introduction of the session for the day. The participants were reassured that they were not expected to disclose their personal histories and were encouraged to contribute to discussions.
The group aimed to increase health awareness in relation to seizures and to exercise relaxation skills. It was thought that regular practice was paramount for the participants to implement these new healthy routines into their daily lives. The relaxation script increased in duration each week, therapeutic elements such as future pacing, stress reduction and positive self-statements were added in consecutive sessions.
Each group participant was offered a follow-up appointment at their convenience a few weeks after the group sessions ended. Members reported that relaxation had become easier to achieve each week as they learnt the skill, which was reflected on the higher post-relaxation scores. Participants reported that they had began to use deep breathing to manage stressful situations (eg, bus journeys) and reported a positive sense of mastery and achievement. One person stated that he had become more aware of muscle tension in his body and how this related to the reduction of seizure occurrence over the course of the group programme.
Participants mentioned that they had felt ‘looked after’ during the intervention. In the past, seizure patients stated frequently that verbal advice from nurses (sometimes only over the telephone) about possible medication changes or reassurance regarding emotional distress had been perceived as distant and not useful. In contrast, group participants reported that they enjoyed the direct contact with the group leaders, that they actively learnt and had opportunities to get feedback about their experiences.
This article has described a health management intervention for people with seizures offered in a community health clinic. One key aspect was the achievement of a positive alliance with group participants, which was reflected by good group attendance and positive feedback. Nurses in general practice would be well suited to engage with patients is this way, ie to pay attention to their health and social dilemmas and to track individual levels of engagement. The holistic understanding of the presented conditions and the integration of assessment data allows the nurse facilitator to guide participants to mutual sharing of their progress.
Furthermore, the health-promoting framework was consolidated by a clearly defined intervention schedule which also ties in with the resources in a health practice. The presented high-quality and time-limited intervention provides an example of how patients’ difficulties can be validated. In the long-term, this may lead to improved independence with health management strategies and fewer events of clinic attendance.
Headaches and brain injury from a biopsychological perspective.
A practical psychotherapy guide –Gurr B. Karnac, 2015.
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