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This essay will discuss the relationship between the long-term health condition epilepsy and the priority health need of the emotional wellbeing/prevention of anxiety and depression. The World Health Organisation (WHO, 2018) states that epilepsy is one of the most common neurological disorders, with around 50 million people worldwide, of all ages, suffering from this long-term condition. The National Institute for Health and Care Excellence (NICE, 2018) has estimated that between 362,000 and 415,000 in England suffer this disorder, however delving into this guidance, it appears to be the same figures stated in 2012 when this guidance was originally published meaning these figures are 6 years behind what current figures reveal. The majority of the up to date figures for the United Kingdom (UK) have come from independent charities, such as Epilepsy Action (2018) who identified there are 600,000 who have epilepsy.
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Epilepsy is a disorder of the central nervous system that has clinical manifestations of seizures, with cognitive and psychiatric comorbidities affecting one in three people with epilepsy (PWE) (Tellez-Zenteno et al., 2007). However, a new definition was proposed by the International League Against Epilepsy (ILAE) (Fisher et al., 2014) which included social, psychological and cognitive manifestations linked to the condition. Including psychological difficulties linked to epilepsy, it allows for more management concerning depression and anxiety, but the definition could imply that psychological disorders are a consequence of the long-term condition, when the relationship much more intricate. The rationale for selecting emotional wellbeing of anxiety and depression in epilepsy is because literature shows how this health need is still unrecognised in this patient group and by recognising the importance improvement quality of life and necessary support can be provided. Kwon and Park (2014) supports this rationale by stating how depression and anxiety in PWE hasn’t been focused in epilepsy research for some time, although epidemiological studies have proven the prevalence of these psychological disorders, such as Valeta (2017) identifying that many disorders occur in PWE including depression and anxiety, more so than healthy people. Drinovac et al., (2015) identified that depression is a frequent disorder in PWE compared to other neurological conditions or compared with the general adult population, with figures showing 17% of adults with epilepsy suffered depression to the 10% of the general adult population. They further state that even with having more specialist clinics and nurses that 52% of PWE are untreated for this health need. This indicates that more awareness and funding through the government and institutes need to go into epilepsy, considering the amount of attention the WHO and other national health institutes have advocated for detection and treatment of depression in the community setting.
Corbin and Strauss (1991) developed the trajectory model, which is an important instrument in the management of patient’s chronic illnesses for the health professional. This was updated by Corbin (1998) to emphasise more on health promotion and prevention in a holistic approach. Most of the phases from the trajectory can be applied to epilepsy, so the chosen phase on trajectory model is the unstable phase, where McCorkle and Pasacreta (2001) describe this phase as where symptoms are uncontrolled in the chronic illness. Jacoby and Baker (2008) researched the comparison between the unstable phase with quality of life in PWE, showing how the patient’s mood was compromised, therefore patients with uncontrolled epilepsy who experience depression or anxiety have a significantly reduced quality of life. The chosen setting is in the community as adults with epilepsy should be reviewed either by a nurse specialist or GP depending on how well controlled it is or if any social or psychological issue are present (NICE, 2018). Having a nursing assessment by the GP or epilepsy specialist nurse allows for an individualised care plan appropriate to the patient, as a nursing assessment allows systematic gathering of information relevant to the patient’s individual needs and problems (Toney-Butler and Unison-Pace, 2018).
Depression and anxiety are health needs that are shown in various literature to be prevalent in people with epilepsy, effecting their emotional wellbeing (Elgar, Johnstone and Hoppe, 2017). Jacoby et al., (2015) suggest that depression and anxiety were more important predictors affecting quality of life compared to seizures themselves however, depression has been linked to reducing a person’s quality of life due to a poor response from anti-epileptic drugs (AED’s) (Agrawal et al., 2016). Whatley, Dilorio and Yeager (2010) identified how epilepsy causes a multifaceted impact causing restrictions on normal activities or social difficulties such as driving, employment, education and feeling a loss of independence which ultimately can contribute to an impaired psychological state, impeding on a person’s quality of life. Depression and anxiety are considered to have a bigger impact on the quality of life in PWE, implying that recognition of the management of epilepsy is much more then controlling this long-term condition, therefore assessment tools, prioritising research and connection to available services are essential to be incorporated to provide the best possible care (Mula and Cock, 2014). Keezer, Sisoydia and Sander (2016) highlights the need for validated and reliable screening tools, to allow for early detection and treatment for the many disorders that have predominant relationship with epilepsy. This was discussed two years previously by de Oliveira et al., (2014) describing how fundamental it is to have dependable and consistent tools due to how often depression and anxiety in epilepsy appears to go unnoticed, suggesting how over the years that validity and consistency of assessment tools need further improvement. Elgar, Johnstone and Hoppe (2017) states that by consistently using validated screening tools for depression and anxiety by epilepsy nurse specialists, general practitioners and neurologists is fundamental to screen for emotional well-being.
This paper will explore the Hospital Anxiety and Depression Scale (HADS) and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) holistic assessments pertaining to epilepsy. Zigmond and Snaith (1983) originally developed HADS which clinically measures the anxiety and depression in non-psychiatric patients in hospital outpatient clinics, eventually validated for use in primary and community by Snaith (2003). It has 14 questions, 7 that is linked to anxiety and 7 to depression which is then scored on a 4 item Linkert scale of 0, 1, 2 or 3, therefore the results can be between 0-21 in relation to the appropriate 7 questions (Beeman et al., 2014). Stern (2014) identified several advantages of using the HADS in a primary or community setting, the first having a fast completion time of 2-5 minutes, and second the ease and simplicity of use. A benefit for using this assessment tool for PWE is that is does not contain any items that relate to somatic symptoms, which is a confounding factor in the diagnosis due to the condition itself or possible side effects from AED’s, (Wiglusz et al., 2016). Although this tool has undergone extensive testing for its validity and reliability in chronic conditions which include epilepsy, Lin and Pakpour (2017) identified some limitations relating to the psychometric properties by questioning as to whether this tool can test anxiety in this patient group and further go on to discuss if male and females interpret HADS the same. They provided a study which showed how HADS has promise in its validity and consistency for PWE, including the anxiety domain, whilst Cameron et al., (2014) identified through their study that the HADS items didn’t contain any differential item functioning (DIF) across genders as DIF could show bias through demographic aspects relating to age, gender and ethnicity. The various literature and studies that have been discussed are showing how promising using HADS is for PWE.
Gilliam et al., (2006) originally developed and validated the NDDI-E in the United States (US), a 6-item instrument where a total score of 15 or above identifies depression in epilepsy and is recognised as an easy to use and reliable tool that has good psychometric properties . This well-known screening tool provides a quick assessment for depression in PWE, the items screen for depression but doesn’t contain any somatic symptoms, similarly to the HADS tool, therefore reducing the sensitivity in screening for depression (Friedman et al., 2009). Another advantage is that compared to other screening tools such as Beck Depression Inventory (BDI) which has 21 items, this tool has shorter questions making it more time efficient, allowing for a better capability to detect depression in a busy clinic setting, although the BDI has been more validated for PWE (Micoulaud-Franchi et al. 2015). Margrove et al., (2011) conducted a study to verify the ability of using NDDI-E for use in community setting, where they discovered that PWE found this an easy to use questionnaire creating an improvement in detecting depression, allowing the possibility for it can being used as a care pathway in the community setting, however suggestions where made that this should be used by trained clinical staff such as epilepsy specialist nurses (ESN’s). Von Oertzen et al., (2012) states how NDDI-E is the only screening tool that is specific to use for patients with epilepsy , however it was to still be validated in the UK but this could be argued, by Kerr (2011) stating how NDDI-E should be used for all new PWE and those having reviews in a clinical setting, although some discussion could be made for resource availability then, Rampling et al., (2012) provided validation in the UK population making the cut off score of 14 for depression compared to the original 15 and by Margrove et al., (2011) study already discussed. The NDDI-E has been translated from English to seven different languages across the world aiming to validate this tool, making it multilingual and reliable to use worldwide (Hansen and Amiri, 2015). This displays how much a problem depression is for PWE is globally however, there were a variety of cut off points for measuring depression in the countries of which Metternich et al., (2012), who validated NDDI-E in Germany, discusses that this could be due to intercultural differences. They also found that the NDDI-E has a low aversiveness compared to other validated tools such as the BDI, that becomes time consuming or patients refusing to answer some of the questions, confirming that the NDDI-E is user friendly (Metternich et al., 2012). Research has been conducted to show a relationship between using the NDDI-E to determine risk of depression and AED adherence, Ettinger et al., (2014) found that depression determined by using NDDI-E has a significant connection with an increased risk of nonadherence of taking AEDS, which both will have a significant effect on the quality of life. This strongly indicates another importance of screening for depression in PWE due to consequences that could arise not just from depression and anxiety but also due to nonadherence with medication.
Due to the limited psychometric properties on the screening tools for depression and anxiety for PWE, studies and research in the UK compared to other countries is scarce to show a reliable and significant change in practice at present. The limitations illustrate the importance of the nurse patient relationship for PWE to enhance clinical outcomes for depression and anxiety.
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Providing high quality nursing care is based on a holistic view involving the patient and gathering information to understand their view (Valizadeh, 2017). The NMC (2015) identifies the importance that for a nurse-patient relationship to work, all nurses must show compassion and empathy to provide a high level of care. Establishing a therapeutic relationship is a fundamental part of nursing which requires active participation from both nurses and patients to improve their physical and emotional well-being (Strandås and Bondas, 2017), in light of this there is recognition globally on the importance of having nurse specialists in epilepsy. In England (NICE, 2013) recommends that those with epilepsy must be able to have access to ESN’s as there is evidence that ESN’s can improve clinical outcomes of depression and anxiety for PWE. Bramhall (2014) states that barriers in communication from patients can include the feelings of anxiety about being judged, feeling emotionally weak or attempting to feel strong for other people’s benefit such as family members. ESN’s are able to overcome that barrier as they are multifaceted, described as being autonomous, assessing the health need of the patient through communication, advise and information for the individual, families or carer as well as develop epilepsy management protocols and more (Goodwin, 2011). Pfäfflin, Schmitz and May (2016) states that In the UK ESN’s can prescribe AED’s, provide advice and relevant information for social and medical complications and interdisciplinary link, which will allow for an increase in satisfaction from patients therefore a high standard of care can be achieved. Having nurse led interventions allows for a number of benefits for the patient, such as improving their emotional well-being and adherence to medication, in turn benefitting hospitals by being able to reduce admissions and costs (Ridsdale et al., 2013). Allowing patients to adopt self-management can improve quality of life through health promotion and compliance to treatment and recommendations however, ethical dilemmas can arise such as leading patients to believe they are being abandoned (Lawn, McMillan and Pulvirenti, 2011), or furthermore the health professional being unable to relieve their control or accepting a patients choice that may actually be improving their quality of life (Holm and Severinsson, 2013). Recommendations that ESN’s must provide yearly reviews can erase this barrier as the patient will be able to contact them if a problem arises and delivering compassionate nursing care is an important focus in the UK through empathetic communication (Department of Health, 2012). The emotional work nurses put in can either result in satisfaction or for others emotional exhaustion and risk of burn out showing the ethical implications that could occur and quality of life for the patient can be improved or negative consequences can impact the care the patient receives (Hunt, Denieffe and Gooney, 2017). Having ESN’s empowers the individual to make informed choices relating to treatment options and lifestyle change, therefore the nurse and patient can work together in a holistic manner to make ethical and evidence-based decisions, including any ethnic, cultural or religious needs (Higgins, 2008). This shows how nurses must act as advocates, help guide patients to the appropriate community care pathway and education patients and their family members during their assessments.
Mahrer-Imhof et al., (2013) state how psychosocial problems not only affect PWE but can also extends to their family or caregivers and how there appears to be a lack of support on quality of life and/or interaction. Various literature has shown the negative consequences and burdens surrounding families and caregivers of PWE which includes social isolation and the unpredictability of when a seizure will occur (Thompson et al., 2014), poor mindsets and emotional adjustments (Klonoff, 2014) and the tendency of families to become too overprotective (Saada, Wang and Bautista, 2015). These negative impacts can lead to families and caregivers making unconscious influences which can trigger behavioural problems and increased levels of stress can intensify the feelings of depression potentially exacerbating the severity and frequency of seizures of PWE. Saada, Wang and Bautista (2015) summarise how negative factors such as employment difficulties, safety concerns and arranging activities can lead to social isolation and increase the burden for the families and caregivers. Chen et al., (2013) discussed that with married adults with epilepsy it is generally the spouse that will become the primary caregiver and feelings of depression and lack of support can manifest, with evidence that those who’s epilepsy was uncontrolled had more marital stress, especially those who were jobless, depressed or of female gender compared to those who were stable. Interestingly, in comparison to the negative aspects in martial status, there have been reports of positive outcomes such as one by Zhao et al., (2011) that PWE who are married across a variety cultures, were provided a higher quality of life and support, translating to a more positive outlook compared to those who are unmarried.
By using assessment tools, best practice can be acheievd by involving family members to optimise and maximise their involvement with the care for the individual. Positive consequences between PWE and their families or caregiver has a big impact as shown by Thompson at el., (2014) who discuss how families caring for PWE reported an increase in closeness and stability, to support one another through adapting original dynamics improving their psychological outlook. This shows how important the assessment for depression and anxiety in PWE is, allowing management for the psychological disorder that can also arise in the families and caregivers. However, families involved with the assessment may impose restrictions, emphasise their own emotional concerns and stop autonomy for the individual to speak their own mind, therefore nurses must make sure these barriers are overcome by communicating information and listening to everyone especially the person with epilepsy (Arminoff and Daroff, 2014).
Improving PWE’s emotional well-being is shown to be priority globally yet with figures published from governing bodies and health institutes in the UK last being 2012, indicates the lack of funding going into epilepsy, considering how prevalent this neurological condition is and the social, psychological and cognitive impacts that occur. Having the assessment tools to measure the level of depression and anxiety in PWE is important due to the emotional-wellbeing being a key factor in effecting quality of life and possibly seizure frequency. More literature in the UK should be reported to show the efficacy they have in detecting depression and anxiety and the outcomes they provide today, as most research is from other countries, which has allowed the assessment tools validated and reliable to use in the UK. Caring for adults with epilepsy has a deep effect on families and caregivers by either causing restrictions and an impact on everyone’s well-being, however it can also provide a unity and strengthen bonds. The importance of educating family members as well as the individual with epilepsy and being able to access support groups can reduce psychological distress associated with caring for PWE.
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