Capítulo 2 Inmaterialidad actual, un mundo intangible
2.2. La Inmaterialidad en nuestra sociedad
2.2.2. Idea, concepción, una sociedad de rendimiento
Gaps in knowledge, treatment, diagnosis, education, advocacy, legislation and research have kept PWE from leading productive lives, as “epilepsy is a multifaceted disease that needs a comprehensive approach” (Moshé et al., 2015, p. 894). Moshé et al. (2015) continue to explain that this knowledge gap among healthcare professionals arise due to their poor understanding of the multifaceted components of epilepsy and its implications. Multimodal strategies that address stigma, psychoeducation, advocacy of social and economic decision-makers and the promotion of empowerment are needed to better the lives of PWE (Birbeck, Chomba, Atadzhanov, Mbewe, & Haworth, 2007).
It is evident from the above literature that epilepsy has severe and debilitating effects on all aspects of a person’s life beyond the immediate impact of the seizures itself. Treatment and intervention programmes for epilepsy should therefore be tailored to the specific needs and experiences of the individual PWE.
2.10.1 Pharmacology. ES is primarily treated by medication that aims to control seizure
recurrence (Ba-Diop et al., 2014; Institute of Medicine, 2012). A wide range of AEDs are available to treat seizures and these medications are often prescribed for people with epilepsy (Institute of Medicine, 2012). Approximately 70 per cent of PWE’s, seizures can be managed with AEDs, but unwanted adverse and toxic effects often lead to treatment failure and eventual
discontinuation (Perucca & Gilliam, 2012; S. P. Singh, Sankaraneni, & Antony, 2017). Headaches, fatigue, cognitive impairment, depression, irritability, double vision, agitation, aggressive behaviours, ataxia, fluctuations in weight and decreased bone mineral density count among the most common adverse effects of AEDs (Perucca & Gilliam, 2012). Patient education on the use of AEDs, regular clinical monitoring and preventative measures can minimize the adverse effects of AEDs (Perucca & Gilliam, 2012).
In developing countries, the majority of PWE do not receive AED treatment (Cameron et al., 2012; Mbuba, Ngugi, Newton, & Carter, 2008). The number of people who require treatment for ES but who are not receiving it is known as the treatment gap. In Africa this gap is estimated at approximately 75 per cent for low income countries and 90 per cent for the poorest (Kvalsund & Birbeck, 2012). Factors such as inadequate healthcare infrastructure, unskilled manpower, insufficient healthcare financing and unavailability of AEDs all contribute to the treatment gap (Cameron et al., 2012; Mbuba et al., 2008). Many PWE do not seek treatment due to long travel times to reach healthcare facilities and traditional and cultural beliefs regarding epilepsy (Mbuba et al., 2008).
2.10.2 Surgery. Some types of ES respond to surgery, which can be a potential
treatment option for people whose seizures do not respond to medication (Institute of Medicine, 2012). “Surgical treatment includes resection, destruction, or disconnection of epileptic brain tissue” and depends on the localization of the epileptic zone (Moshé et al., 2015, p. 892). The success rate of surgery for certain types of ES range from 50 to 87 per cent (Chandra & Tripathi, 2010). However, more research is needed to assess the long-term results and effectiveness of surgery compared to other types of treatment (Institute of Medicine, 2012; Moshé et al., 2015; S. P. Singh et al., 2017). Due to the high cost, few neurosurgeons and paucity of sophisticated technology, ES surgery is rarely performed in resource-poor countries such as in SSA (Ba-Diop et al., 2014; Boling et al., 2009; A. Singh & Trevick, 2016).
2.10.3 Vagal nerve stimulation. People who suffer from severe epilepsies, who are not
ideal candidates for surgery and who have failed multiple medications may be assisted by stimulating the vagus nerve (Institute of Medicine, 2012; Moshé et al., 2015; S. P. Singh et al., 2017). This type of deep brain stimulation entails the implantation of a device that is designed to prevent seizures through the electrical stimulation of the vagus nerve when abnormal electric activity is detected in the cortex (Moshé et al., 2015). This type of treatment is not widely available in SSA due to the cost (Caraballo & Fejerman, 2015).
2.10.4 Psychotherapy. Tang et al. (2014) claim that psychological therapies can play an
integral part in the treatment of mental health disorders in PWE. Combination therapy in PWE has not been widely investigated, but it is suggested that psychotherapy can consolidate the efficacy of medication intervention (Kanner et al., 2012). In this context, a recent systematic
review found that “psychotherapy can improve depression and anxiety in patients with epilepsy” (Mehndiratta & Sajatovic, 2013, p. 39). Psycho-behavioural therapies generally aim to improve the individual’s ability to cope with epilepsy, but they may also increase psychological well- being and seizure control (Tang et al., 2014). Two systematic reviews of CBT for PWE suggest that this type of treatment may be effective for the treatment of depressive symptoms in epilepsy (Gandy, Sharpe, & Perry, 2013; Leeman-Markowski & Schachter, 2017). Trigger management as part of behavioural therapy aims to teach PWE “how to recognize or identify possible seizure triggers by observing environmental, personal, or lifestyle factors (such as lack of sleep, flashing lights, fever, or excessive alcohol consumption) that appear to increase their susceptibility to seizures” (Institute of Medicine, 2012, p. 171). Programmes that focus on social adjustment, improving quality of life, medication education and adjustment to seizures have shown promise (Mittan, 2009).
Several studies highlight the importance of programmes and interventions aimed at improving the coping abilities of PWE. These include the importance of exercise and diets, participation in sport, the self-management of epilepsy, psycho-education, the involvement of family in the management of epilepsy and programmes aimed at increasing epilepsy awareness and decreasing stigma (Bautista, 2017; Capovilla, Kaufman, Perucca, Moshé, & Arida, 2016; Elliott, Lu, Moore, McAuley, & Long, 2008; Mameniškienė, Guk, & Jatužis, 2017; Miller, Bakas, & Buelow, 2014; Njamnshi, Angwafor, Tabah, Jallon, & Muna, 2009; Ridsdale, Philpott, Krooupa, & Morgan, 2017).