Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia.
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.
Michigan State University, International Neurologic & Psychiatric Epidemiology Program (INPEP), East Lansing, Michigan, USA.
Melissa A
MA
Elafros
Claire
C
Sakubita-Simasiku
Masharip
M
Atadzhanov
Alan
A
Haworth
Elwyn
E
Chomba
Gretchen L
GL
Birbeck
D000328:Adult; D001008:Anxiety Disorders / Q000453:epidemiology / Q000523:psychology*; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D002675:Child, Preschool; D003866:Depressive Disorder / Q000453:epidemiology / Q000523:psychology*; D004827:Epilepsy / Q000453:epidemiology / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D009035:Mothers; D016017:Odds Ratio; D012720:Severity of Illness Index; D013240:Stereotyping; D011795:Surveys and Questionnaires; D015024:Zambia / Q000453:epidemiology
Affiliate stigma; Africa; Caregiver; Depression; Education; Felt stigma