Ria Reis

The Treatment Gap in Epilepsy : The Current Situation and Ways Forward

Summary: This article is a summary of a workshop held by the ILAE concerning the issue of the epilepsy treatment gap in developing countries. The gap is defined in terms of those people with epilepsy who are not being appropriately treated and is the result of an array of medical, political, social, economic, and cultural factors. The situation regarding the treatment gap for various countries is reviewed, along with some of its causes. Although the overall gap is estimated to be large, a number of recent projects and interventions have been effective in delivering appropriate treatment to people with epilepsy in underresourced countries of the developing world. It is hoped that these may be transferable elsewhere and that, combined with the ILAE/IBE/WHO Global Campaign against Epilepsy and increased support from the worldwide epilepsy community, the treatment gap will begin to be bridged.

How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients

In this report we discuss the consequences of e-health for patient-clinician encounters. On the basis of an analysis of the literature, we propose an analytical framework, composed of five different themes, regarding the impact of e-health on the relationship between patients and their health professionals. Internet health sites can: be or come to be a replacement for face-to-face consultations; supplement existing forms of care; create favorable circumstances for strengthening patient participation; disturb relations; and/or force or demand more intense patient participation. Though there is as yet insufficient empirical evidence supporting these effects, we believe that distinguishing the proposed themes will help to guide an in-depth discussion and further research. We conclude that in particular the redistribution of tasks and responsibilities to patients in their daily lives requires more attention in future research.

Madness or sadness? Local concepts of mental illness in four conflict-affected African communities

BackgroundConcepts of ‘what constitutes mental illness’, the presumed aetiology and preferred treatment options, vary considerably from one cultural context to another. Knowledge and understanding of these local conceptualisations is essential to inform public mental health programming and policy.MethodsParticipants from four locations in Burundi, South Sudan and the Democratic Republic of the Congo, were invited to describe ‘problems they knew of that related to thinking, feeling and behaviour?’ Data were collected over 31 focus groups discussions (251 participants) and key informant interviews with traditional healers and health workers.ResultsWhile remarkable similarities occurred across all settings, there were also striking differences. In all areas, participants were able to describe localized syndromes characterized by severe behavioural and cognitive disturbances with considerable resemblance to psychotic disorders. Additionally, respondents throughout all settings described local syndromes that included sadness and social withdrawal as core features. These syndromes had some similarities with nonpsychotic mental disorders, such as major depression or anxiety disorders, but also differed significantly. Aetiological concepts varied a great deal within each setting, and attributed causes varied from supernatural to psychosocial and natural. Local syndromes resembling psychotic disorders were seen as an abnormality in need of treatment, although people did not really know where to go. Local syndromes resembling nonpsychotic mental disorders were not regarded as a ‘medical’ disorder, and were therefore also not seen as a condition for which help should be sought within the biomedical health-care system. Rather, such conditions were expected to improve through social and emotional support from relatives, traditional healers and community members.ConclusionsLocal conceptualizations have significant implications for the planning of mental-health interventions in resource-poor settings recovering from conflict. Treatment options for people suffering from severe mental disorders should be made available to people, preferably within general health care facilities. For people suffering from local syndromes characterized by loss or sadness, the primary aim for public mental health interventions would be to empower existing social support systems already in place at local levels, and to strengthen social cohesion and self-help within communities.

Reintegration of former child soldiers in northern Uganda: coming to terms with children's agency and accountability

Reintegration processes of formerly abducted children have yielded limited success in northern Uganda. The article seeks answers to the question why reintegration processes in the area have failed. The approach of one Christian non-governmental organization towards reintegration is compared with the ideas and strategies of formerly abducted child soldiers and people in their communities on how best to deal with their violent past.

Kiyang-yang, a West-African Postwar Idiom of Distress

In 1984, a healing cult for young barren women in southern Guinea Bissau developed into a movement, Kiyang-yang, that shook society to its foundations and had national repercussions. “Idiom of distress” is used here as a heuristic tool to understand how Kiyang-yang was able to link war and post-war-related traumatic stress and suffering on both individual and group levels. An individual experience born from a traumatic origin may be generalized into an idiom that diverse sectors of society could embrace for a range of related reasons. We argue that, for an idiom to be understood and appropriated by others, there has to be resonance at the level of symbolic language and shared experiences as well as at the level of the culturally mediated contingent emotions it communicates. We also argue that through its symbolic references to structural causes of suffering, an idiom of distress entails a danger for those in power. It can continue to exist only if its etiology is not exposed or the social suffering it articulates is not eliminated. We finally argue that idioms of distress are not to be understood as discrete diagnostic categories or as monodimensional expressions of “trauma” that can be addressed.

Ecological resilience: working with child-related psychosocial resources in war-affected communities

This article reviews and summarizes existing research that has examined treatment outcome with traumatized children. Methodological challenges in this line of research are addressed. Additionally, ...

Communal violence and child psychosocial well-being: qualitative findings from Poso, Indonesia

This exploratory study examined the health care system in relation to communal violence-related psychosocial wellbeing in Poso, Indonesia, as preparation for conducting a cluster randomized trial of a psychosocial intervention. We employed focus groups with children (N = 9), parents (N = 11), and teachers (N = 8), as well as semi-structured interviews with families affected by communal violence (N = 42), and key informants (N = 33). An interrelated set of problems was found that included poverty, an indigenized trauma construct, morally inappropriate behavior, inter-religious tensions, and somatic problems. Participants emphasized social-ecological interactions between concerns at different systemic levels, although problems were mainly addressed through informal care by families. The programmatic and research implications of these findings are discussed.

The epidemiology of spirit possession in the aftermath of mass political violence in Mozambique

In this article we assess the prevalence rates of harmful spirit possession, different features of the spirits and of their hosts, the correlates of the spirit possession experience, health patterns and the sources of health care consulted by possessed individuals in a population sample of 941 adults (255 men, 686 women) in post-civil war Mozambique in 2003-2004. A combined quantitative-qualitative research design was used for data collection. A major study outcome is that the prevalence rates vary according to the severity of the possession as measured by the number of harmful spirits involved in the affliction. The prevalence rate of participants suffering from at least one spirit was 18.6 percent; among those individuals, 5.6 percent were suffering from possession by two or more spirits. A comparison between possessed and non-possessed individuals shows that certain types of spirit possession are a major cause of health impairment. We propose that knowledge of both local understandings of harmful spirit possession and the community prevalence of this kind of possession is a precondition for designing public health interventions that sensitively respond to the health needs of people afflicted by spirits.

Silencing distressed children in the context of war in northern Uganda: An analysis of its dynamics and its health consequences.

Children in northern Uganda who are the focus of this article were born and raised in the context of war. The research presented here is based on a one-year ethnographic study (2004-2005) with children aged 9-16 years. Various qualitative and quantitative methods used in this study were geared to this age group. A grounded theory approach was followed to trace the reasons for the silencing of their distress. Throughout the study a child actor perspective was implemented: children were approached as social actors capable of processing social experience and devising ways of coping with life. We found that their lives were characterized by high rates of exposure to extreme events, such as deaths, child abductions, disease epidemics, gender-based violence and poverty. As a consequence, their level of emotional distress was high. However, they did not readily speak about their distress. The article identifies and analyses a complex set of reasons for childrens distress and its silencing by the children themselves and other members of society. A distinction is made between the processes of victim blaming, self blaming, mimetic resilience and mirroring resilience. In addition, the consequences of the silencing children are presented. Children expressed their emotional suffering primarily in physical aches and pains and used pharmaceuticals and herbal medicines to minimize their distress. The result was a medicalization of psychological distress. In conclusion, we reflect on the necessity of a multi-pronged approach to address childrens distress.

ILAE/WHO “Out of the Shadows Campaign” Stigma: does the flag identify the cargo?

People with epilepsy around the globe are confronted with different levels and types of stigmatization, which may vary greatly among geographical regions and cultures. Furthermore, striking differences in social research into the stigma surrounding epilepsy can be seen across cultures. For instance, research projects taking place in Europe and North America place greater emphasis on perceived stigma (i.e., the type/amount of discrimination a person expects to encounter), whereas studies in the southern hemisphere (e.g., Africa south of the Sahara) emphasize enacted stigma (i.e., the type/amount of discrimination actually encountered). Cross-cultural research into the stigma of epilepsy may benefit from a multidisciplinary team from various cultural backgrounds, to develop a shared theoretical framework and shared research tools, which allow for contextual and cross-cultural adaptation.