Contributions and Implications for Clinical Practice, Policy Making and

By considering the findings of the entire study, it is possible to identify two main issues that seem to capture the essence of HCPs and THPs’ perceptions and experiences in the

management of seizures in Namibia. These two issues related to financial constraints and of lack of awareness and knowledge about seizures.

The survey results listed financial constraints as the most significant obstacle in

accessing healthcare services. This was corroborated by information gained from interviews with HCPs and THPs. Seizure disorders are expensive conditions due to the costs involved in

consulting various specialists and having to undergo multiple tests and investigations to arrive at a diagnosis. The same concern is evident from the literature, which states that to diagnose a person with PNES, considerable costs are incurred over an extended period for numerous procedures, tests and treatments (Reuber et al., 2002). In addition, financial constraints extended towards the shortage of specialized equipment and services in Namibia. By returning to the different systems of the EST that was used to interpret the findings of this study, one finds that financial concerns are mainly located in the meso- and exosystems of the model. However, the most salient theme throughout this study centred on the lack of awareness and knowledge regarding seizures and this theme permeated all the systems of the EST. It can therefore be postulated that by effecting change to a theme that repeats across all the systems in the model, one might be able to bring pervasive change to all the levels of the EST, including the financial constraints located in the meso- and exosystems. This particular barrier is less dependent on financial factors and underscores how the power of knowledge can shape perceptions and experiences.

Given the lack of resources in terms of skilled manpower, finances and healthcare facilities endemic to resource-poor countries, it is crucial that the available resources be applied in the most judicious and circumspect manner possible. However, Namibian stakeholders will be hard-pressed to advocate for the much-needed resources that can improve the lives of patients with seizures as long as there are no epidemiological data available to back up their claims. For instance, there is currently no statistical information available for PNES or ES in Namibia, although prevalence is estimated to be higher than currently reported in the literature. Given the unique demographics of the country, its developing nature and the reported lack of access to specialized services and equipment, it may be possible that the prevalence of seizures are underreported. It may therefore be worthwhile to establish the incidence and prevalence,

combined with the medical and social burden of the disorder to disseminate information for seizure incentives.

Towards this end, the availability of epidemiological data will not only increase the understanding of seizures in Namibia, but will also inform the planning and execution of healthcare interventions (Thurman et al., 2011). However, in order to ensure that a population- based epidemiological study yields data that are consistent and comparable between populations, the attributes of economy, acceptability, accuracy and representativeness have to be considered (Thurman et al., 2011). It is further evident from Thurman et al.’s (2011) article that an

undertaking of such magnitude should not be underestimated and a significant amount of

preparation precedes the planning and execution of a high validity epidemiological study. Taking into consideration some of the factors mentioned in the above standards document, it becomes obvious that much more research regarding seizures is needed in Namibia before a fully-fledged epidemiological study will become a reality.

The present study is but the first of its kind in Namibia and paves the way for future research on seizures in this developing, resource-poor country. By heeding the guidelines from the standards document and combining it with the findings of this exploratory study, one can identify some focus areas for future research. It is also important to utilize the findings from previous studies performed in similar contexts to guide the process of building a knowledge base that can be adapted to Namibian circumstances.

Future research will require the input of various data sources, which may include the public and private healthcare sectors, population surveys and patients (Thurman et al., 2011). This corresponds to suggestions that were made in some of the manuscripts that future research should include state healthcare workers, patients and the broader public to generate a more inclusive view of seizures in Namibia. Towards this end, the current study was able to point out that there are challenges in how seizures are managed in Namibia and that these challenges not only include HCPs and THPs, but also other role players. The study was also able to highlight that most of these challenges related to lack of knowledge and awareness about seizures and that future research should aim to address these. Participants asked for training opportunities for HCPs and THPs, awareness campaigns aimed at the public, and health literacy programmes for patients. All these depend on the successful identification of exactly what is required of these interventions in terms of a Namibian audience. This brings the discussion back to the need for more knowledge, which can only come from more research.

Specific topics mentioned by HCPs that require more exploration centred on difficulties experienced by HCPs in the diagnosis of PNES. Brown et al. (2011) recognize that HCPs, and specifically non-specialists, still find the differentiation of PNES from ES particularly

needed to distinguish PNES in clinical practice. It was evident from the current findings that some HCPs, and especially GPs, may require more training to distinguish ES from PNES. A study that was part of an ILAE Commission on Neuropsychobiology Non-Epileptic Seizures Task Force initiative, reported that not all countries have access to vEEG, which is the gold standard for making a definitive PNES diagnosis (Benbadis, 2005; LaFrance Jr., Baker, et al., 2013). As an alternative, the authors outline a staged approach to diagnose PNES by evaluating key diagnostic methodologies that allow developing countries with lower and middle income population groups, such as Namibia, the opportunity to diagnose PNES in the absence of vEEG- monitoring (LaFrance Jr., Baker, et al., 2013). Guidelines such as these can aid in the training of GPs and other healthcare workers subject to its adaptation to Namibian conditions and the successful dissemination of the information to service providers.

In the same vein, participants indicated a need for standardized referral practices to facilitate transition of care among HCPs. Findings from the present study highlighted the

challenges encountered in referring patients to other practitioners, something that often results in diagnostic delays and the ineffectual rotation of patients among various HCPs. Through the development of standardized methods for referral, it may be possible to decrease the time needed to diagnose and treat seizures, which may in turn result in a reduction of healthcare costs. The introduction of a multidisciplinary team that can ensure coordinated, high quality and patient- centred care may address these challenges, but a clearer understanding of the workings of such a team is required (Institute of Medicine, 2012). Future research is required to identify the possible role players that can contribute to such a team and the roles, responsibilities and communication structures necessary to make it a success.

This brings the discussion to THPs and the role that these providers play in the in the management of seizures. Early on in the study, a lack of communication between THPs and HCPs was mentioned as one of the key challenges in provision of care to patients. HCPs that participated in this study recognized that more collaboration with THPs is needed to account for the cultural attribution of seizures, but also that modern medical facilities alone cannot provide in the healthcare needs of people suffering from seizures. In an effort to understand the role of THPs in the management of seizures, Manuscript four set out to explore the experiences of traditional and faith healers and how seizures are customarily perceived and treated in non- western cultures. The results from this investigation provided some remarkable insights into THPs’ ability to distinguish between seizures as a result of identifiable physical causes and seizures that originate as a result of psychological or spiritual causes. However, despite evidence that THPs play an integral role in the treatment of epilepsy in Africa, THPs’ role in the treatment of seizures in Namibia remains unrecognized and their practices unregulated (Baskind &

Stekelenburg et al., 2005). Until such time when THPs are formally recognized as legitimate service providers and their role in the treatment of seizures acknowledged, their contribution to healthcare will not be utilized to the fullest extent. This necessitates future research aimed at informing government policies regarding regulatory bodies that recognize the role of THPs in healthcare provision. Finally, the inclusion of the perspectives of THPs could contribute to later studies on how to achieve culturally inclusive healthcare services for patients with seizures.

At this point in the discussion, it is necessary to return to the importance of gathering the requisite information to realize the above goals for future research. This requires the input of various stakeholders in the seizure management chain and depends on the willingness of these sources to engage in the processes necessary to secure adequate data collection. To quote the guideline of “Acceptability” as described by Thurman et al. (2011, p. 4), “Data collection may require the acceptance and cooperation of many persons and organizations involved in reporting cases. Subjects may be asked to provide substantial time taking surveys and participating in other assessments.” One also has to take into account that there is a near absence of computerized database systems that can provide coded data on individual patients in Namibia. Therefore, before such a process can even be considered, it is imperative to increase awareness about seizures in the Namibian population. This will rely on the introduction of awareness campaigns that target stigmatization and negative attitudes towards PWE. It may also eradicate ignorance, improve seizure literacy and create acceptance and understanding about the impact of seizures on people’s lives (Sebera et al., 2015). Towards this end it is important to establish a common terminology for seizure-related illnesses to prevent misunderstanding and to make provision for cultural interpretations and differences in languages and concepts used to describe seizures (Thurman et al., 2011). By raising awareness, one might encourage the Namibian population to participate in future research about seizures. In addition, the knowledge that can be gauged from such research might strengthen one’s position to negotiate with the stakeholders responsible for policies and funds to address the current circumstances of seizure patients in Namibia.

Despite the methodological limitations, this study is the first of its kind to be conducted in Namibia and the findings may serve as a point of departure for future research on this topic. These findings have highlighted the perceptions, frustrations and the circumstances in which HCPs and THPs diagnose and treat seizures and make a valuable contribution to the existing knowledge about this disorder. Although access to specialized services and a lack of financial resources featured strongly among responses, lack of knowledge and awareness about seizure disorders play a major role in how these conditions are managed. Insufficient economic

resources may limit the provision of services and are difficult to address, but campaigns aimed at increasing awareness may contribute significantly to alleviating the seizure burden.

This raises the question of responsibility and who should address and drive the initiatives discussed here. Whereas this discussion started with the delineation of roles insofar seizure management in Namibia is concerned, it is also evident that a shortage of primary HCPs may prevent these providers from becoming the driving force towards change. This presents an opportunity for secondary HCPs, such as psychologists and social workers, to become more proactive in addressing the challenges described in this study. The psychosocial impact of seizures cannot be denied and was highlighted throughout this dissertation. This combines with the fact that treatment for PNES is mostly found in psychotherapy (Krebs, 2007). Secondary HCPs are therefore well placed to take up the baton and address the needs identified in this study.