Family Stigma Associated With Epilepsy: A Qualitative Study

amjad, Reza nabi; Nasrabadi, Alireza Nikbakht; Navab, Elham

doi:10.15171/jcs.2017.007

Cited by 15 publications

(10 citation statements)

References 23 publications

(22 reference statements)

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“…While this finding contrasts with previous observations [12], it brings to light the fact that epilepsy stigma does not only affect the patient, but seems to touch family members to a greater extent. Indeed, research on family stigma due to epilepsy has shown that relatives of PWE are often confronted with shame, and may experience as much stigma as the PWE themselves [21,22]. Moreover in onchocerciasis-endemic areas like our study sites, the occurrence of OAE in clustered homes and communities further compound the stigma experienced by PWE and their families [23].…”

Section: Discussionmentioning

confidence: 79%

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study

Jada

Fodjo

Abd-Elfarag

et al. 2020

Seizure

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Introduction: Epilepsy is a major public health concern in sub-Saharan Africa, particularly in resource-limited rural villages where persons with epilepsy (PWE) are often confronted with a wide treatment gap, frequent stigma and high cost of epilepsy care. We investigated stigma and economic cost related to epilepsy in the states of Maridi and Amadi in South Sudan, two onchocerciasis endemic areas with high epilepsy prevalence. Methods: Between November 2019 and February 2020, community-based surveys were conducted in eight villages of Maridi and Amadi States. Consenting PWE were identified via a door-to-door approach, and perceived stigma was assessed using the validated Kilifi stigma scale. Additional data about household income, as well as epilepsy-related direct and indirect costs were collected. Results: 239 PWE were recruited (95 from Maridi, 144 from Amadi). Stigma scores were higher in Maridi compared to Amadi (mean scores: 13.9 vs 6.5, p < 0.001). Mean weighted epilepsy costs per month in Maridi (38.4 USD) were double those observed in Amadi (17.6 USD). The main epilepsy-related expenditure was the purchase of anti-epileptic drugs (AED). Stigma scores correlated with epilepsy cost (Spearman-rho = 0.24, p < 0.001) and were positively associated with traditional medicine use (regression estimate = 1.9; p = 0.027). Conclusion:In rural South Sudan, PWE and their families often experienced stigma from the community. Higher perceived stigma was associated with traditional medicine use, which increased the overall cost of epilepsy management. Demystifying epilepsy and making AED more accessible would improve the quality of life of PWE and their families, and reduce the economic burden of epilepsy.

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Section: Discussionmentioning

confidence: 79%

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study

Jada

Fodjo

Abd-Elfarag

et al. 2020

Seizure

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“…This qualitative meta- synthesis included a total of 13 studies, with 316 participants from eight different countries and cultures: China ( N = 3) ( 3 , 8 , 12 ), America ( N = 2) ( 13 , 14 ), Malaysia ( N = 1) ( 15 ), Ireland ( N = 2) ( 19 , 21 ), Iran ( N = 2) ( 16 , 22 ), Australia ( N = 1) ( 17 ), Sri Lanka ( N = 1) ( 18 ), Greece ( N = 1) ( 20 ) ( Table 3 ). Among the 13 included studies, 12 used phenomenological research methods and one study Jones et al ( 14 ) used grounded theory methods.…”

Section: Resultsmentioning

confidence: 99%

The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies

Shao

Hou

et al. 2022

Front. Psychiatry

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ObjectiveEpilepsy is one of the most common chronic neurological disorders in children. The caregivers of these children bear heavy burden of care in the process of taking care of them. The objective of this metasynthesis was to explore the experiences and needs of caregivers of children with epilepsy.Methods and data sourcesEight databases (PubMed, CINAHL, EMBASE, Web of Science, CNKI, Wanfang Data, VIP database, and CBM) were searched for qualitative studies from each database's inception to 31 June 2021. Studies were critically appraised using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Qualitative data were extracted, summarized, and meta-synthesized.Results13 studies were included, covering the data of 316 participants. 36 research results were extracted from these studies, which were combined into 11 categories, and finally formed 4 themes: (a) heavy burden of care; (b) emotional experience; (c) coping strategies; (d) care needs.ConclusionCaregivers beared a heavy burden of care and psychological burden. Despite the adoption of different coping strategies, their emotional distress was still very serious. Caregivers had unmet care needs. In order to improve caregivers' care capacity, the society and healthcare workers need to provide them with information support, psychological support, and take measures to create a friendly medical and living environment for them.ImpactUnderstanding the experiences of caregivers of children with epilepsy will inform future research and practice. Healthcare workers could develop interventions to reduce caregiver burden and improve the level of caregivers' mental health. On the other hand, effective programs should be designed to improve caregivers' knowledge of the disease and enhance their ability to care. Society needs to take steps to improve the medical environment and the social stigma that is not friendly to epilepsy.

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“…Consequently, PWE and their families have a tendency to boycott the public health structures to avoid being tagged as epileptic. Thus, the health condition of PWE may deteriorate due to lack of care and treatment as reported in Iran [ 17 ]. Moreover, sexual abuse of PWE was reported, as observed in other African countries [ 18 , 19 ].…”

Section: Discussionmentioning

confidence: 99%

“…To reduce the cost for PWE even further, similar to HIV care, the number of health centre visits should be limited by training PWE and their families on self-management [ 28 , 29 ]. In addition, task shifting of epilepsy management to specialized nurses and community health workers will be required [ 17 ]. Increasing access to AEM and improving treatment and care for PWE will decrease epilepsy-related stigma and will allow PWE to live normal lives with no or very few seizures.…”

Section: Discussionmentioning

confidence: 99%

Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo

et al. 2018

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BackgroundA recent study in the Logo and Rethy health zones in the Ituri Province in the Democratic Republic of Congo (DRC) reported that the majority of the persons with epilepsy (PWE) had not been treated with anti-epileptic medication (AEM) or had stopped treatment. Prior to the implementation of an epilepsy treatment programme in these health zones, this study investigated the perceptions and experiences regarding epilepsy and its treatment amongst community leaders, PWE and/or their families, traditional healers and health professionals.MethodsA total of 14 focus group discussions (FGD) and 39 semi-structured interviews (SSI) were conducted with PWE and/or their family members, community leaders, traditional healers, and health professionals in the Logo and Rethy health zones during February 2–19, 2017.ResultsIn the two health zones, the clinical signs of convulsive epilepsy were recognized by community members. However, a variety of misconceptions about epilepsy were identified including the beliefs that epilepsy is a family-related condition, a contagious disease, is transmitted by insects, saliva or by touching a person of the same sex during seizures, or is caused by evil spirits and witchcraft. The role of traditional healers in spreading these beliefs was revealed. The study also reported sexual abuse on PWE, stigmatisation of PWE and loss of productivity of PWE and their families. Some PWE had been using AEM and traditional treatment but were not convinced about the efficacy of these treatment options. The lack of training of health providers about epilepsy care, financial barriers in obtaining AEM, and the shortage of AEM at primary health facilities were revealed. As remedies, the community requested access to a decentralized center for epilepsy treatment. They also proposed using churches and community health workers as communication channels for information about epilepsy.ConclusionsClinical signs of convulsive epilepsy were recognized by the community in the Logo and Rethy health zones but many misconceptions about epilepsy were identified. A comprehensive community-based epilepsy treatment programme with an affordable uninterrupted AEM supply needs to be established. Such a programme should address stigma, misconceptions, sexual abuse and foster the rehabilitation of PWE to alleviate poverty.

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Family Stigma Associated With Epilepsy: A Qualitative Study

Cited by 15 publications

References 23 publications

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study

Epilepsy-related stigma and cost in two onchocerciasis-endemic areas in South Sudan: A pilot descriptive study

The experiences of caregivers of children with epilepsy: A meta-synthesis of qualitative research studies

Community perceptions of epilepsy and its treatment in an onchocerciasis endemic region in Ituri, Democratic Republic of Congo

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