Parental Knoweldge, Attitude, and Perception about Epilepsy and Sociocultural Barriers to Treatment

Abstract

The present study focused on assessing parental knowledge, attitudes, and perceptions about epilepsy as well as addressing the socio-cultural barriers to its treatment. Methods: Data were collected from outpatient consultations in the neurology department of a tertiary referral center in South India. Parents of sixty children suffering from epilepsy in the age-group of 4-15 years were interviewed to explore their knowledge, attitudes, and perceptions about epilepsy. They were recruited in 2015 over a consecutive period of six months. The tools administered were: socio-demographic schedule; clinical profile; a knowledge, attitude, and perception questionnaire prepared by the researcher; and a few case studies with psychosocial interventions. Results: The mean age of the parents who brought their children to the hospital was 37.2 years, with 71.7% being male, of which, 36% were educated up to secondary/intermediate level and were of lower socioeconomic status. The mean age of the children with epilepsy was 8.4 years with 66.7% of them being male. Among them, 50% had the most commonly occurring generalized seizures and 26.7% had the co-morbid condition of cerebral palsy. Around 37.7% parents attributed the seizures to evil spirits or supernatural powers, 52.5% to mental illness, and 72.1% were influenced by their families to initially seek religio-spiritual or traditional treatment in desperation for a cure of the illness. In total, 91.8% of the parents visited holy places, made "mannats", or prayed in worship for hours for their child's recovery.

Knowledge, attitude, practice, and self-efficacy of caregivers of children with epilepsy: impact of a structured educational intervention program

“…This could be attributed to the prevailing low socio-economic level in the study sample, which would increase the caregivers' negative feelings towards epilepsy, considering it a shame or stigma that needs to be hidden, in addition to other related misconceptions. The findings are in agreement with Rani and Thomas [38] whose study in India revealed negative parents' attitudes towards their epilepsy that affected their children, attributing it to evil spirits and thus tending to use religious and spiritual approaches to treatment.…”

Parental knowledge about familial Mediterranean fever: a cross-sectional study

“…14 The FMF severity score comprised of age at FMF onset, frequency of attacks, presence of arthritis, erysipelas-like erythema, amyloidosis, and the required dose of colchicine prophylaxis necessary to control FMF symptoms. Escalating scores indicate mild (score, 1-5), moderate (score, [6][7][8][9], and severe (score, >10) FMF activity. 15 Three self-administered surveys which were developed by authors, were given to caregivers: a. Caregivers' socio-demographics form:…”

“…Parental knowledge about chronic diseases, such as rheumatic diseases, epilepsy, thalassemia, neurofibromatosis, and hypospadias, has been investigated previously. [6][7][8][9][10][11] However, to date, no data has been reported about the parental knowledge of pediatric patients with FMF.…”

“…had a positive family history for FMF. The median Pras activity score was 6(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15).All knowledge-related questions are presented in TableII. Of 171 parents, 154 (90.1%) knew that colchicine is an effective drug in FMF treatment.…”

Delays and disparities in diagnosis for adults with epilepsy: Findings from U.S. Medicaid data

“…Because cultural barriers may influence and delay an individual's care-seeking behavior, these barriers deserve consideration when examining and intervening to mitigate these results, and would motivate qualitative and mixed-methods work. [19][20][21][22] It is important to note, however, that in this study we collapsed a number of racial and ethnic groups due to small sample sizes, and therefore caution should be taken in assuming a homogenous effect across these groups. These cultural factors likely vary, and understanding the nuance between these groups is an important direction for future research.…”