BACKGROUND: Epilepsy-associated stigma contributes substantially to the social, medical, and economic burden of disease for people with epilepsy (PWE), but little is known about its impact on caregivers of PWE. METHODS: To better understand stigma experienced by caregivers of PWE, factors that influence caregiver stigma, and the effect of stigma on a caregiver's psychologic well being, we interviewed 100 caregivers of children with epilepsy in Zambia. Questions assessed maternal knowledge, attitudes, and practices related to epilepsy, maternal stigma, mother's proxy report of child stigma, and maternal psychiatric morbidity. RESULTS: Of 100 mothers, 39 (39%) indicated that their child was stigmatized because of his or her epilepsy. Maternal proxy report of child stigma was highly correlated with maternal stigma (OR: 5.4, p=0.04), seizure frequency (p=0.03) and seizure severity (p=0.01). One in five of 100 mothers (20%) reported feeling stigmatized because of their child's epilepsy. Higher maternal stigma was associated with lower familial and community support (ORs: 65.2 and 34.7, respectively; both p<0.0001) as well as higher psychiatric morbidity (OR: 1.2; p=0.002). Formal education and epilepsy knowledge were associated with decreased maternal stigma (ORs: 0.8 and 0.7, respectively; both p<0.001). CONCLUSIONS: One in five mothers of PWE feel stigmatized because of their child's epilepsy. As maternal stigma is associated with psychiatric morbidity, educating caregivers about epilepsy and screening for anxiety and depression are warranted.
BACKGROUND:Epilepsy-associated stigma contributes substantially to the social, medical, and economic burden of disease for people with epilepsy (PWE), but little is known about its impact on caregivers of PWE. METHODS: To better understand stigma experienced by caregivers of PWE, factors that influence caregiver stigma, and the effect of stigma on a caregiver's psychologic well being, we interviewed 100 caregivers of children with epilepsy in Zambia. Questions assessed maternal knowledge, attitudes, and practices related to epilepsy, maternal stigma, mother's proxy report of child stigma, and maternal psychiatric morbidity. RESULTS: Of 100 mothers, 39 (39%) indicated that their child was stigmatized because of his or her epilepsy. Maternal proxy report of child stigma was highly correlated with maternal stigma (OR: 5.4, p=0.04), seizure frequency (p=0.03) and seizure severity (p=0.01). One in five of 100 mothers (20%) reported feeling stigmatized because of their child's epilepsy. Higher maternal stigma was associated with lower familial and community support (ORs: 65.2 and 34.7, respectively; both p<0.0001) as well as higher psychiatric morbidity (OR: 1.2; p=0.002). Formal education and epilepsy knowledge were associated with decreased maternal stigma (ORs: 0.8 and 0.7, respectively; both p<0.001). CONCLUSIONS: One in five mothers of PWE feel stigmatized because of their child's epilepsy. As maternal stigma is associated with psychiatric morbidity, educating caregivers about epilepsy and screening for anxiety and depression are warranted.
Authors: M S Durkin; L L Davidson; P Desai; Z M Hasan; N Khan; P E Shrout; M J Thorburn; W Wang; S S Zaman Journal: Epidemiology Date: 1994-05 Impact factor: 4.822
Authors: Melissa A Elafros; Julius Mulenga; Edward Mbewe; Alan Haworth; Elwyn Chomba; Masharip Atadzhanov; Gretchen L Birbeck Journal: Epilepsy Behav Date: 2013-03-01 Impact factor: 2.937
Authors: Maya Sabatello; Jo C Phelan; Dale C Hesdorffer; Sara Shostak; Jeff Goldsmith; Shawn T Sorge; Melodie R Winawer; Wendy K Chung; Ruth Ottman Journal: Epilepsia Date: 2015-08-20 Impact factor: 5.864
Authors: Jeremy C Kane; Melissa A Elafros; Sarah M Murray; Ellen M H Mitchell; Jura L Augustinavicius; Sara Causevic; Stefan D Baral Journal: BMC Med Date: 2019-02-15 Impact factor: 8.775
Authors: Joseph Kirabira; Jimmy Ben Forry; Alison Annet Kinengyere; Wilson Adriko; Abdallah Amir; Godfrey Z Rukundo; Dickens Akena Journal: Syst Rev Date: 2019-01-12