ReviewAn integrative review of the benefits of self-management interventions for adults with epilepsy
Introduction
The life-limiting effects of epilepsy are well documented in the literature [1]. Epilepsy, a chronic neurological disorder, places significant costs to both the individual and society [2]. People with epilepsy (PWE) are often reported as having little knowledge about their disorder; thus, adaptation to their condition can be poor [3]. People living with epilepsy are required to make a number of adaptive behavioral changes including coming to terms with their diagnosis, understanding their seizure activity, or adhering to a medication regime. In addition to these changes, it is noted that a number of psychosocial adjustments can disrupt well-being. Common concerns for people with epilepsy include financial and employment issues, strains on interpersonal relationships, altered cognition, and social stigma [4], [5]. Epilepsy is associated with a reduced quality of life (QOL), where poor seizure control, adverse treatment effects, psychological morbidity, lack of awareness about social support, reduced self-efficacy, and low internal locus of control are often predictors of poor QOL in PWE [6].
Managing epilepsy well requires self-management abilities from the individual. Self-management for PWE refers to a number of adaptive behaviors that a person may engage in to control their seizures, including lifestyle changes (such as keeping to their medication regime), safety considerations (such as cessation of driving) and day-to-day activities (such as activities aimed at reducing stress and improving sleep quality). The focus of seizure control in PWE is largely managed using antiepileptic drugs (AEDs); however, it is reported that in 30% of PWE, AEDs do not completely control seizure activity, and their efficacy relies upon strict adherence [7]. In addition to not achieving full seizure control, the unpredictable and often sudden onset of seizures places challenging demands on PWE and their family and is a powerful predictor of low QOL [8]. In a recent study using e-diary self-reporting, some PWE could identify through self-awareness prodromal (early) features such as mood and premonitory triggers (e.g., blurred vision, hunger/thirst, tiredness) before seizure onset [9]. Self-prediction of seizure onset was correlated with increased age, a favorable mood, and the person's increased confidence in the accuracy of their seizure predictions. Despite the last point, PWE are largely not encouraged to identify specific triggers that may precipitate seizures or to alternatively employ nonpharmacological strategies to improve seizure control.
Additionally, underdiagnosed depression and anxiety are well-recognized issues in chronic epilepsy, but the evolution of these symptoms after diagnosis is not well understood [10]. This point is generally due to a lack of empirical evidence that can demonstrate a link between psychopathology and epilepsy [11]. The global burden of epilepsy is well known [12], and resilience in PWE is beginning to be examined as a clinical option to assist people in enhancing self-mastery, especially with seizures. Resilience has been considered in this patient group in terms of transcending disability as a result of intractable seizure disorder [13], where having a resilient outcome is when seizure control is featured as central [6], [14]. The notion of resilience in the context of chronic conditions has been examined for people who have a diagnosis of cancer [15], HIV/AIDS [16], and mental illness [17], [18]. The results of these studies identified personal characteristics associated with being resilient, and these comprise optimism, an active or adaptable coping style, and the ability to elicit support. Rabkin et al. [16] suggest that higher level of intelligence and education, a wide range of interests, and the ability to articulate future goals are attributes of resilient individuals. Antoni et al. and Edward et al. agreed that optimism, hope, and high levels of self-efficacy were all important ingredients to being resilient in the face of chronic illness [15], [18]. Put more simply, when individuals think that they are incapable of controlling what happens in a situation, their adaptive skills become restrictive and often ineffective. However, when individuals believe that life events and outcomes are manageable, learned helplessness is avoided, and active attempts are made by the individual to overcome aversive situations, opening the possibility of moving forward to achieve resilience. By being resilient, individuals have the means to recover, adjust, resist stress, and potentially thrive in the face of adversity. In particular, enhancing resilience for PWE can be achieved through the following: early clinical intervention, a positive social and familial climate, self-esteem and support-building, social and life skills/vocational education, peer involvement, and extracurricular activities [19].
Self-management interventions such as psychoeducation and behavioral interventions have long been considered particularly important for the development of self-efficacy and resilience and improvement of QOL for PWE [4], [20], [21], [22], [23], [24], [25], [26]. Self-management interventions can provide PWE with the tools and strategies so they can manage their condition, and these have the potential to enhance the individual's sense of mastery over their condition (i.e., resilient behaviors). The purpose of this integrative review was to identify research that examined the impact of self-management interventions including the person's experience of health-related quality of life (HRQOL), subjective well-being, and resilience. The objectives of the review were to systematically search for, critically appraise, and summarize research materials on the topic. An integrative review such as this offers a unique perspective of the current evidence regarding management of epilepsy and the educational requirements for PWE. This unique perspective has the potential to identify research gaps and/or to inform clinical practice. While there have been a number of reviews previously published on self-management in epilepsy [24], [25], [26], [27], [28], [29], the current integrative review reports on up-to-date research not previously included in earlier reviews. This review is timely as previous publications did not address the findings in the context of self-management and building of resilience capacity in people with epilepsy. In this context, the findings of this review have the potential to inform clinical decision-making in relation to ongoing management after clinical consultation.
The research questions for this review include the following:
‘What are the benefits of self-management for PWE?’
‘What is the importance of psychosocial interventions for improving self-management outcomes and building resilience for PWE?’
‘What is the most effective mode of delivery for self-management education and resilience building strategies for PWE?’
Section snippets
Search strategy
A search of the literature was undertaken using the following databases: CINAHL Complete, Cochrane Library, MEDLINE Complete, and PsycINFO. The search was limited to scholarly (peer-reviewed) journals, and all articles were retrieved with no date limits. Keywords used were as follows: lifestyle management (OR self-management) AND seizure(s) (OR epilepsy) AND health related quality of life OR subjective well-being (wellbeing or “well being”) OR resilience.
Type of participants
This review included any adult who
Findings
The search yielded 1016 abstracts to be screened. Papers were screened with reference to the inclusion criteria and the intention for the review, and 49 papers were retrieved and read in full by the researchers. Of these articles, 14 papers were related to the topic of interest, and these were included in this review (see Fig. 1 and Table 1). Studies excluded from the review are summarized in Table 2, and reasons for exclusion have been provided. One of the reasons for exclusion was due to the
Discussion
The review highlights important areas for consideration when considering self-management education and promoting the experience of being resilient in the context of managing epilepsy for PWE.
Limitations
An integrative review offers a distinctive viewpoint of the current literature regarding self-management interventions and its benefits to HRQOL for PWE including seizure management, adaptation, and resilience. However, when data are mixed and synthesized together, there is the chance of invalid assumptions. Additionally, the heterogeneity of the research reviewed precludes conducting a meta-analysis. This review was limited to peer-reviewed articles and, therefore, may have missed valuable
Implications
The choice and the focus of a treatment program for PWE are important, including whether the program effect is sustainable over time. This review highlights the importance of using an individualized approach including psychosocial considerations in self-management education for PWE. Importantly, the content of the educational material is a major consideration and should be informed by consumer preference potentially developed with consumer involvement. The traditional approach to epilepsy
Conclusions
This review highlights the potential benefit of lifestyle management on the management of epilepsy and impact on the individual's HRQOL including subjective well-being and self-mastery (i.e., building resilient behaviors). In consideration of the complexity of epilepsy and individual responses to adaptation to this chronic condition, self-management and self-righting capabilities are now being considered as a contemporary approach to reducing the negative impact of chronic ill states. While
Acknowledgments
This manuscript was developed with support by grants from St Vincent's Private Hospital, Melbourne.
Conflict of interest
The authors have no conflicts of interest to disclose.
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