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Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study.

ABSTRACT: The effects of epilepsy on children and their families, factors influencing the treatment and education gap and socio-cultural beliefs about epilepsy in children in rural sub-Saharan Africa are not clearly defined. We conducted a qualitative study, with 38 in-depth interviews and 2 focus group discussions with carers of children with epilepsy (CWE) in Tanzania. Discrimination, isolation and lack of hope were identified as major issues. Poor school attendance was attributed to learning difficulties, behavior problems, ongoing seizures and restricted school access. The treatment gap was related to misdiagnosis, preferential use of traditional treatment and cost of biomedical treatment. The hopes expressed for the future centered on access to treatment and education. Improved access to diagnosis, cost-effective treatment, sensitization of the community on epilepsy, collaborative care provision with traditional and faith healers and improved access to specialist schooling could improve the quality of life and future of CWE in this region.

SUBMITTER: Mushi D

PROVIDER: S-EPMC3597140 | biostudies-literature | 2012 Mar

REPOSITORIES: biostudies-literature

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Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study.

Mushi D D Burton K K Mtuya C C Gona J K JK Walker R R Newton C R J C CR

Epilepsy & behavior : E&B 20120215 3

The effects of epilepsy on children and their families, factors influencing the treatment and education gap and socio-cultural beliefs about epilepsy in children in rural sub-Saharan Africa are not clearly defined. We conducted a qualitative study, with 38 in-depth interviews and 2 focus group discussions with carers of children with epilepsy (CWE) in Tanzania. Discrimination, isolation and lack of hope were identified as major issues. Poor school attendance was attributed to learning difficulti ...[more]

PMID: 22341180

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Project description:INTRODUCTION:Significant gaps persist in providing HIV treatment to all who are in need. Restricting care delivery to healthcare facilities will continue to perpetuate this gap in limited resource settings. We assessed a large-scale community-based programme for effectiveness in identifying people living with HIV and linking them to antiretroviral treatment. METHODS:A retrospective secular trend study of 14 high burden local government areas of Nigeria was conducted in which two models of community antiretroviral treatment delivery were implemented: Model A (on-site initiation) and Model B (immediate referral) clusters. Model A cluster offered services within communities, from HIV diagnosis to immediate antiretroviral therapy initiation and some follow-up. Model B cluster offered services for HIV diagnosis up to baseline evaluation and provided referral for antiretroviral therapy initiation to nearest health facility providing HIV services. For controls, we selected and cluster-matched 34 local government areas where community antiretroviral treatment delivery was not implemented. Outcomes of interest were: the number of people identified as HIV positive and the number of HIV-positive individuals started on antiretroviral treatment; from June 2014 to May 2016. We used interrupted time-series analysis to estimate outcome levels and trends across the pre-and post-intervention periods. RESULTS:Before community antiretrovial treatment introduction, Model A cluster identified, per 100,000 catchment population, 500 HIV-positives (95% CI: 399.66 to 601.41) and initiated 216 HIV-positives on antiretroviral treatment (95% CI: 152.72 to 280.10). Model B cluster identified 32 HIV-positives (95% CI: 25.00 to 40.51) and initiated 8 HIV-positives on antiretroviral treatment (95% CI: 5.54 to 10.33). After commART introduction, Model A cluster showed an immediate significant increase in 744 HIV-positive persons (p = 0.00, 95% CI: 360.35 to 1127.77) and 560 HIV-positives initiated on treatment (p = 0.00, 95% CI: 260.56 to 859.64). Model B cluster showed an immediate significant increase in 30 HIV-positive persons identified (p = 0.01, 95% CI: 8.38 to 51.93) but not in the number of HIV-positives initiated on treatment. Model B cluster showed increased month-on-month trends of both outcomes of interest (3.4, p = 0.02, 95% CI: 0.44 to 6.38). CONCLUSION:Both community-models had similar population-level effectiveness for rapidly identifying people living with HIV but differed in effectively transitioning them to treatment. Comprehensiveness, integration and attention to barriers to care are important in the design of community antiretroviral treatment delivery.

Project description:BackgroundMany people with epilepsy in low-income countries do not receive appropriate biomedical treatment. This epilepsy treatment gap might be caused by patients not seeking biomedical treatment or not adhering to prescribed antiepileptic drugs (AEDs). We measured the prevalence of and investigated risk factors for the epilepsy treatment gap in rural Kenya.MethodsAll people with active convulsive epilepsy identified during a cross-sectional survey of 232,176 people in Kilifi were approached. The epilepsy treatment gap was defined as the percentage of people with active epilepsy who had not accessed biomedical services or who were not on treatment or were on inadequate treatment. Information about risk factors was obtained through a questionnaire-based interview of sociodemographic characteristics, socioeconomic status, access to health facilities, seizures, stigma, and beliefs and attitudes about epilepsy. The factors associated with people not seeking biomedical treatment and not adhering to AEDs were investigated separately, adjusted for age.Findings673 people with epilepsy were interviewed, of whom 499 (74%) reported seeking treatment from a health facility. Blood samples were taken from 502 (75%) people, of whom 132 (26%) reported taking AEDs, but 189 (38%) had AEDs detectable in the blood. The sensitivity and specificity of self-reported adherence compared with AEDs detected in blood were 38·1% (95% CI 31·1-45·4) and 80·8% (76·0-85·0). The epilepsy treatment gap was 62·4% (58·1-66·6). In multivariable analysis, failure to seek biomedical treatment was associated with a patient holding traditional animistic religious beliefs (adjusted odds ratio 1·85, 95% CI 1·11-2·71), reporting negative attitudes about biomedical treatment (0·86, 0·78-0·95), living more than 30 km from health facilities (3·89, 1·77-8·51), paying for AEDs (2·99, 1·82-4·92), having learning difficulties (2·30, 1·29-4·11), having had epilepsy for longer than 10 years (4·60, 2·07-10·23), and having focal seizures (2·28, 1·50-3·47). Reduced adherence was associated with negative attitudes about epilepsy (1·10, 1·03-1·18) and taking of AEDs for longer than 5 years (3·78, 1·79-7·98).InterpretationThe sensitivity and specificity of self-reported adherence is poor, but on the basis of AED detection in blood almost two-thirds of patients with epilepsy were not on treatment. Education about epilepsy and making AEDs freely available in health facilities near people with epilepsy should be investigated as potential ways to reduce the epilepsy treatment gap.FundingWellcome Trust.

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Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study.

Publications

Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study.

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