Related Experiment Video
Updated: Jan 27, 2026
Author Spotlight: Advancing Pediatric Epilepsy Surgery in Children Through Novel Biomarkers and Enhanced Localization
Published on: September 20, 2024
Stress and perceived stigma among parents of children with epilepsy
Akanksha Rani1, Priya Teresa Thomas2
1Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Govindswamy Building (2nd Floor), Hosur Road, Near Bangalore Milk Dairy, Landmark: SBI NIMHANS Branch, Bangalore, 560 029, India. akanksha.rani89@gmail.com.
Insights
Parents of children with epilepsy experience significant stress and stigma, often fearing negative reactions and social isolation. This impacts their communication, decision-making, and emotional well-being.
Area of Science:
- Pediatric Neurology
- Psychology
- Public Health
Background:
- Epilepsy in children presents unique challenges for families.
- Parental stress and stigma are significant factors affecting care and outcomes.
- Understanding these challenges is crucial for providing effective support.
Purpose of the Study:
- To investigate the levels of stress and perceived stigma in parents of children with epilepsy.
- To explore the impact of these factors on parental well-being and family dynamics.
- To identify specific challenges faced by parents seeking neurological care in South India.
Main Methods:
- A cross-sectional study involving 60 parents of children (aged 4-15) with epilepsy.
- Utilized the Childhood-Illness related Parenting Stress Inventory and the Parent Stigma Scale.
- Data collected over a 6-month period in 2015 at a tertiary referral center.
Main Results:
- Parents reported significant difficulties in communicating about their child's seizures and making medical decisions.
- Financial strain and role functioning challenges were common.
- A majority perceived negative societal reactions, leading to anger, guilt, fear, anxiety, and depression.
Conclusions:
- Parental perceptions of stigma significantly influence a child's self-perception and social integration.
- Fear of shame, self-blame, and rejection exacerbates parental stress.
- Interventions addressing parental stress and stigma are vital for holistic child epilepsy care.
Purpose:
The present study aimed at understanding the stress and perceived stigma among parents of children with epilepsy seeking treatment at a tertiary referral center for neurology in South India.
Materials And Methods:
Parents of sixty children suffering from epilepsy in the age group of 4-15 years were interviewed to explore parental stress and perceived stigma. They were recruited consecutively over a period of 6 months in 2015. Tools administered were Childhood-Illness related Parenting Stress Inventory (Manford in J Neurol 264(8):1811-24, 2017) and the Parent Stigma Scale (Baca et al. in Value Health 13(6):778-786, 2010).
Results:
The mean age of parents was 37.2 years, and the majority of parents who used to bring their child to the hospital were male (71.7%) and educated up to the secondary/intermediate level (36%) and were from lower socio-economic status. The mean age of children with epilepsy was 8.4 years with the majority of them being male (66.7%), affected with chronic seizures (58.3%) with most commonly occurring seizure type being generalized seizures (50%), with a co-morbid diagnosis of cerebral palsy (26.7%). A significant number of parents reported difficulty in communicating with medical team (58.3%) and significant others (51.7%) about their child's seizures and difficulty in making decisions related to their child's medical care (43.3%) which strained their financial resources and created difficulty in adequate role functioning. Findings indicated that most of the parents of children with chronic seizures perceived reactions of others to be negative (53.3%) and would limit family social interaction which resulted into emotional reaction in the form of anger, guilt, fear, anxiety, and depression.
Conclusion:
Parents are important figures in the process by which children with epilepsy came to acknowledge themselves being different from other children. Parents often feared divulging their child's epilepsy to their friends and relatives because they experienced a sense of shame, self-blame, and rejection which also increased their stress.
More Related Videos
10:22Interictal High Frequency Oscillations Detected with Simultaneous Magnetoencephalography and Electroencephalography as Biomarker of Pediatric Epilepsy
Published on: December 6, 2016
07:56Assessing the Coherence of Parents' Short Narratives Regarding their Child Using the Five-Minute Speech Sample Procedure
Published on: September 19, 2019
Related Concept Videos
00:55Parental Care
01:21Perceiving Loudness, Pitch, and Location
Place theory, or place coding, suggests that different pitches are heard because various sound waves activate specific locations along the cochlea's basilar membrane. The brain determines the pitch of a sound by...
01:27Parenting Styles
Authoritarian Parenting
This style is strict and controlling, with little room for open dialogue. Authoritarian parents demand obedience and often enforce rules with minimal warmth. Children raised this way may lack social skills and initiative, usually comparing themselves to others unfavorably.
Authoritative...
01:28Relationship with Parents: Attachment
01:23Influence of Parents and Peers on Identity
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth....
01:24Epilepsy and Seizures: Overview
Various factors can trigger epilepsy, including genetic factors, brain damage, metabolic causes, and unknown etiology. Diagnosis of epilepsy involves electroencephalography (EEG), which...