Factors associated with caregiver burden of adults with epilepsy in a middle-income country

Oliveira, Mariana Calora Quintino de; Lima, Ellen Marise; Paiva, Maria L.; Valente, Kette D.

doi:10.1016/j.seizure.2022.03.015

Cited by 10 publications

(4 citation statements)

References 31 publications

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“…This is a valid and reliable 12-item self-report scale that assesses the subjective burden experienced by informal caregivers [21] ). Due to a lack of epilepsy-specific caregiver burden questionnaires, the Zarit caregiver burden inventory was used to measure burden among epilepsy caregivers, consistent with previous studies [16] , [22] . Items cover the most commonly mentioned problems by caregivers including the caregiver’s health, psychological well-being, finances, social life, and the relationship between the caregiver and the care recipient [21] , [23] .…”

Section: Methodsmentioning

confidence: 99%

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Viny¹,

Trevino²,

Bouldin³

et al. 2023

Epilepsy & Behavior

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Section: Methodsmentioning

confidence: 99%

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Viny¹,

Trevino²,

Bouldin³

et al. 2023

Epilepsy & Behavior

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“…Moreover, chronic diseases and E in particular affect not only the single individual but also caregivers. Intellectual disability and behavioural alterations associated with E add an additional burden on caregivers’ shoulders in terms of costs, responsibility of care, centralization of the family’s attention and social isolation ( 36 ).…”

Section: The Patients’ Journey and Unmet Needs: Governance Hypothesismentioning

confidence: 99%

Governance of the clinical pathway and management of the patient suffering from epilepsy and drug-resistant epilepsy

Neve

Falcicchio

2022

Grhta

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Epilepsy is a diffuse chronic neurological disease affecting around 50 million people worldwide. The diagnostic criteria by the International League against Epilepsy must be fulfilled to diagnose the disease, which is characterized by brief and transient episodes of abnormal neuronal activity involving one or both hemispheres, depending on the epilepsy type. The diagnosis of epilepsy should be properly and timely made because patients suffering from the disease are affected not only by seizure recurrence but also by epilepsy-related psychiatric and/or cognitive comorbidities that may have a huge impact with severe professional and social implications. It is of vital importance to define a specific governance model that has to be virtuously applied into the different phases of the clinical pathway of the patients with epilepsy in order to guarantee them the best model of care possible.

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“…Amongst other studies, studies [ 7 , 8 , 9 , 10 , 11 ] show that most literature on caregivers of people living with epilepsy tends to focus more on the epilepsy burden, primarily on children/teenagers living with epilepsy. On the other hand, [ 12 ] conducted a first-aid intervention study in the UK, and on many occasions, we found that initiatives such as these are specific to developed countries.…”

Section: Introductionmentioning

confidence: 99%

Caregivers’ and Family Members’ Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa

Musekwa

Makhado

Maphula

2023

IJERPH

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Epilepsy, a common neurological disease, has a significant impact on people living with epilepsy (PLWE), their caregivers, and their family members. Research has consistently shown that the quality of life of PLWE is low. To expand on this knowledge, a non-experimental quantitative survey study was conducted to explore the knowledge, attitudes, and practices (KAP) of caregivers and family members towards epilepsy and epilepsy-related seizures. The study sample consisted of 519 participants from two South African provinces (Limpopo and Mpumalanga), mostly aged 26–35 years. The study revealed that most respondents in Limpopo had no formal education, whereas in Mpumalanga, most had a secondary education. Most respondents (32.4%) reported always using a spoon to prevent tongue biting during seizures. However, 62.4% of respondents reported feeling unprepared to handle an epileptic seizure. Additionally, the majority (54.7%) showed a moderate level of knowledge about epilepsy. Many respondents had a negative attitude towards epilepsy, and there was uncertainty about proper practices during a seizure. In summary, the research highlights unsatisfactory knowledge and practices towards epilepsy and emphasizes the need for increased education and awareness among caregivers and family members. Significant educational investment is needed from medical services to improve epilepsy care, knowledge, and attitudes.

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Factors associated with caregiver burden of adults with epilepsy in a middle-income country

Cited by 10 publications

References 31 publications

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

Governance of the clinical pathway and management of the patient suffering from epilepsy and drug-resistant epilepsy

Caregivers’ and Family Members’ Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa

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