Healthcare provider perspectives regarding epilepsy care in Uganda

Koltai, Deborah; Smith, C. Ray; Cai, Grace; Ratliff, Olivia; Kakooza‐Mwesige, Angelina; Najjuma, Josephine Nambi; Muhindo, Rose; Rukundo, Godfrey Zari; Teuwen, Dirk E.; Kayanja, Adrian; Kalubi, Peter; Haglund, Michael M.; Fuller, Anthony T.

doi:10.1016/j.yebeh.2020.107294

Cited by 11 publications

(4 citation statements)

References 38 publications

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“…In most health facilities in Uganda, there is a shortage of staff, making it necessary for caregivers to be involved in patient care [ 27 , 30 ]. Caregivers of patients with mental illness, who are often their own family members, have a high burden of care characterized by multiple responsibilities, which affects their ability to provide adequate care for their patients [ 31 ].…”

Section: Discussionmentioning

confidence: 99%

Patients’ perspectives on the experience of absconding from a psychiatric hospital: a qualitative study

et al. 2021

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Background Absconding (i.e., escaping) is common among patients with mental illness admitted to psychiatric hospitals. Patients use various strategies to make absconding successful due to the experiences faced during admission. We conducted a study to identify patients’ perspectives on the experience of absconding from the psychiatry facility. Methods We conducted 10 in-depth interviews with patients with a history of absconding from the hospital who were accessing care at the Mbarara Regional Referral Hospital in Mbarara city Uganda. Interviews were audio-recorded, translated when required, transcribed into English, and analyzed thematically to identify relevant themes. Results Participants ranged in age from 18 to 55 and the majority (n = 9) were male. Most had absconded at least twice from a psychiatric facility. We identified different experiences that influenced patients’ engagement in absconding from the psychiatry hospital ward. These included: (1) stigma, (2) experiences with caregivers: mixed emotions, (3) poor resources and services, and (4) the influence of mental illness symptoms. The loneliness of stigma, negative emotions associated with the loss of important roles given the nature and framework of caregiving on the psychiatric ward, as well as the stress of limited resources were a salient part of the patient experience as it relates to absconding. Conclusion Our findings indicate that absconding is a symptom of a larger problem with a mental health system that perpetuates stigma in its design, isolates patients and makes them feel lonely, and forces patients to rely on caregivers who infantilize them and take away all their freedom in a facility with no basic services. For many patients, this makes absconding the only option. Within such a system, all stakeholders (policymakers, health-care providers, caregivers, and patients) should be involved in rethinking how psychiatric facilities should be operated to make the journey of patient recovery more positive.

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Section: Discussionmentioning

confidence: 99%

Patients’ perspectives on the experience of absconding from a psychiatric hospital: a qualitative study

et al. 2021

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“…It is estimated that 80% of patients with epilepsy live in LMIC ( 5), yet these regions have the lowest access to proper diagnostic and management resources and physicians with adequate knowledge of epilepsy. This disparity in care is further intensified in rural regions (11,12). The situation in Egypt with regards to epilepsy is representative of many LMIC.…”

Section: Reaching the Providermentioning

confidence: 99%

The use of virtual tools in narrowing the impact of health disparities in neurology

et al. 2022

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The concept of Epilepsy Treatment Gap (ETG) refers to the proportion of people with epilepsy who are not being appropriately treated. The ETG in the USA approaches 10%, with historically underserved populations and rural populations disproportionately affected. The ETG in Low-and Middle-Income Countries (LMIC) is reported to be 5–10 times higher than in high-income countries. The growing availability of reliable internet access offers a unique opportunity to provide better care to children and adults with epilepsy. In this paper we explore various telehealth (TH) initiatives that have leveraged the availability of easy and free access to an internet connection in reducing the ETG in underserved regions of the world. We describe several interventions targeted to reach patients and providers in rural areas of the United States and in LMIC. First, we examine initiatives that were developed to improve patient access to coordinated care and education regarding epilepsy and seizures. Next, we describe an intervention designed to improve knowledge of epilepsy diagnosis and treatment for providers in LMIC. We conclude with a brief overview of the use of virtual tools in diminishing the ETG.

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“…In the case of epilepsy, stigma arises from a combination of cultural beliefs, superstitions, and a lack of understanding about the nature of the disorder. This stigma is especially prevalent in rural communities, where cultural beliefs and practices considerably influence attitudes about health and illness [5,[26][27][28][29]. In many rural areas, cultural beliefs attribute epilepsy to supernatural causes, such as possession or divine punishment [30][31][32][33].…”

Section: Introductionmentioning

confidence: 99%

Perspective Chapter: Stigma and Its Impact on People Living with Epilepsy in Rural Communities

Gertie Makhado,

Makhado

2024

Epilepsy During the Lifespan - Beyond the Diagnosis and New Perspectives

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Epilepsy is a neurological condition affecting millions worldwide, especially in low- and middle-income countries. This condition is poorly understood, and various misconceptions surround it, leading to stigma toward people living with epilepsy (PLWE). In rural areas, cultural beliefs and practices significantly shape attitudes toward health and illness, exacerbating the stigma associated with epilepsy. This proposed book addresses the pervasive stigma experienced by individuals living with epilepsy in rural communities. Through a review of relevant literature and case studies, this chapter examines how stigma affects the lives of people with epilepsy in rural areas. The chapter also explores strategies for reducing stigma, including community-based education and awareness programmes and the role of healthcare providers in promoting understanding and acceptance of epilepsy. In general, this chapter aims to highlight the need for increased awareness and understanding of epilepsy and its impact on those living with the condition in rural communities. It is believed that by tackling the stigma associated with epilepsy and promoting inclusivity, the quality of life of people living with epilepsy may be improved.

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Healthcare provider perspectives regarding epilepsy care in Uganda

Cited by 11 publications

References 38 publications

Patients’ perspectives on the experience of absconding from a psychiatric hospital: a qualitative study

Patients’ perspectives on the experience of absconding from a psychiatric hospital: a qualitative study

The use of virtual tools in narrowing the impact of health disparities in neurology

Perspective Chapter: Stigma and Its Impact on People Living with Epilepsy in Rural Communities

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