Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review

Kaddumukasa, Mark; Buwembo, William; Munabi, Ian Guyton; Blixen, Carol; Lhatoo, Samden D.; Sewankambo, Nelson; Katabira, Elly; Sajatovic, Martha

doi:10.1016/j.yebeh.2018.04.014

Cited by 83 publications

(63 citation statements)

References 37 publications

(76 reference statements)

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“…7 Our cohort of 235 patients had a broad age distribution, ranging from 1-to 78-years-old, with a substantial proportion younger than 20 years: up to 42% of the children included in our study were younger than10 years old and 24% were even younger than 2 years. [17][18][19] Several findings point to stigmatization of PwE. Indeed, limited information is available on the etiology and exact diagnosis of seizure type or syndrome.…”

Section: Discussionmentioning

confidence: 99%

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An ambispective cohort study on treatment outcomes of patients with epilepsy in a tertiary epilepsy center in Rwanda and recommendations for improved epilepsy care

Steenkiste

Sebera²,

Nsanzabaganwa³

et al. 2019

Epilepsia Open

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Summary Objective Because outcome data inform and drive healthcare decisions and improvement of patient care, this study aimed to gain a deep understanding of sociodemographic profiles and treatment outcomes of newly presenting and recently diagnosed persons living with epilepsy (PwE) at a tertiary epilepsy center in Rwanda. Methods In June 2016 (T1), as a first stage of this single‐center cohort study, an ambispective chart review was conducted on baseline sociodemographic and disease characteristics of PwE using a structured questionnaire. Missing data were obtained by phone interview. In 2017, follow‐up data were collected by phone interview on treatment outcomes after 15‐months (T2). Results Of 406 PwE screened, 235 were included at T1 and outcomes on 166 PwE were obtained at T2. More than 70% were <20 years of age, with a male preponderance. A high number of patients were aged ≥20 years, were single (67.4%), unemployed (41.5%), and had no formal education or primary level education (53.9%), possibly reflecting stigma. A mean delay in diagnosis since first seizure increased with age at first seizure, amounting to 3 years for patients aged ≥20 years. At T2, 69.6% of 166 patients who could be contacted reported no seizures in the previous month. Valproate monotherapy was the most frequently prescribed treatment. At T2, 47% had discontinued treatment, which was often not recommended by a physician, despite medical insurance coverage in >90% of patients. Only 19% reported an adverse event. Marked and partial improvement in quality of life (QoL) was reported by, respectively, 50.9% and 32.7% of patients. Significance Encouraging results on improved seizure control and QoL were observed at follow‐up. The treatment gap remains high due to loss to follow‐up and treatment discontinuation. In this article, we discuss needs and recommendations for improving patient care, requiring concerted efforts of stakeholders at all levels of the healthcare system.

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Section: Discussionmentioning

confidence: 99%

“…It is unclear whether this is due to stigma or cognitive decline in our patients. [17][18][19] Several findings point to stigmatization of PwE. Sebera et al 20 reported in 2005 that more than two-thirds of the Rwandan population considered PwE not apt to get married.…”

Section: Discussionmentioning

confidence: 99%

An ambispective cohort study on treatment outcomes of patients with epilepsy in a tertiary epilepsy center in Rwanda and recommendations for improved epilepsy care

Steenkiste

Sebera²,

Nsanzabaganwa³

et al. 2019

Epilepsia Open

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“…Misconception is a complex social construction with all the associated consequences that could explain, at least partially, unequal opportunities in employment and education for PWE [42]. In an effort to determine the factors associated to epilepsy misconception in sub-Saharan Africa, a systematic review found that perceptions of how epilepsy affects people with epilepsy were significantly associated with rural residence, the male sex, and lower education [43].…”

Section: Discussionmentioning

confidence: 99%

Sociocultural representations of epilepsy in the Central African Republic: A door-to-door survey

M’Belesso

Luna

Yangatimbi

et al. 2019

Seizure

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Purpose: To describe sociocultural representations of epilepsy in a sub-Saharan Africa rural community using a population-based approach. Method: A cross-sectional door-to-door survey was underway on a rural community of the Central African Republic in 2015. A two-stage stratified sampling was performed. Trained care personnel performed individual face-to-face interviews. A standardized questionnaire was used to assess epilepsy. We collected sociodemographic data and cultural representations toward epilepsy in general population. Results: Overall, 1023 participants were interviewed. Epilepsy prevalence was 11.7 (95%CI 6.7-20.4) per 1000 people. In the rural community, epilepsy was identified as a supernatural disease related to bad luck (40.4%), witchcraft (31.3%) or a curse (28.3%). Epilepsy was confused with a mental disorder in 75.9% of subjects. Three quarters of participants (75.3%) considered epilepsy as a contagious disease. Saliva was mainly mentioned as a means of transmission in 63.8%. More than half of participants preferred or recommended traditional treatments. Only 24.8% believed in the efficacy of medical treatment for epilepsy. Conclusions: Epilepsy misconceptions are highly prevalent in rural sub-Saharan Africa. Understanding misrepresentations is an essential phase to develop culturally appropriate interventional programs in order to improve medical treatment adherence, quality of life, and to decrease stigma. Campaigns to raise awareness are needed in urban and rural population to reduce misconception and combat stigmatization.

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“…Compared to other women in SSA, fewer WWE go for antenatal visits [23]. This might be related to their relatively lower economic status, to the fact that some of them may be cognitively impaired, or as a result of the prevailing stigma by the community and to a lesser extent among healthcare personnel [58]. WWE and their families should be educated on the benefits of following up their pregnancy at the local Table 2 Comparison of the benefits and disadvantages of AEDs used in women with epilepsy.…”

Section: Antenatal and Post-natal Follow-upmentioning

confidence: 99%

Women with epilepsy in sub–Saharan Africa: A review of the reproductive health challenges and perspectives for management

Menon

Fodjo

Weckhuysen

et al. 2019

Seizure

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Background: Epilepsy is one of the commonest neurological conditions affecting women of reproductive age. Epilepsy management during pregnancy is a clinical conundrum, requiring a balance between seizure control and risk minimization for the women with epilepsy (WWE) as well as for their fetuses. The objective of this comprehensive review is to explore the reproductive health challenges of WWE in sub-Saharan Africa (SSA) and ways to address them. Method: Relevant documentation published until June 2019 were retrieved via literature searches performed in PubMed and Google Scholar, as well as a manual search to identify grey literature. Results: WWE in SSA are generally more stigmatized and sexually exploited than women without epilepsy. Contraception use among WWE was reported only in Senegal (51%) and Kenya (14.7%). Only two prospective studies (one in Senegal and one in Nigeria) investigated pregnancy outcomes for a total of 97 WWE. The prevalence of convulsive epilepsy in pregnancy was estimated at 3.33 per 1000. Among pregnant WWE treated with first line anti-epileptic drugs, 16.2% had miscarriages, 41.9% premature births, and 4.1% had babies with malformations. Carbamazepine, which is frequently prescribed to pregnant WWE in SSA, still entails a 2.1-fold increased risk of congenital malformation. No reports were found concerning pre-conceptual counseling and post-natal outcomes in WWE in SSA. Conclusion: Our review underscores the need for contextualized evidence-based clinical guidelines and a collaborative approach to treat WWE in SSA. High risks of congenital malformations and drug interactions with first line AED warrant the provision of safer second line alternatives.

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Epilepsy misconceptions and stigma reduction interventions in sub-Saharan Africa, a systematic review

Cited by 83 publications

References 37 publications

An ambispective cohort study on treatment outcomes of patients with epilepsy in a tertiary epilepsy center in Rwanda and recommendations for improved epilepsy care

An ambispective cohort study on treatment outcomes of patients with epilepsy in a tertiary epilepsy center in Rwanda and recommendations for improved epilepsy care

Sociocultural representations of epilepsy in the Central African Republic: A door-to-door survey

Women with epilepsy in sub–Saharan Africa: A review of the reproductive health challenges and perspectives for management

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