To understand the knowledge, attitude, and perception of parents of children with epilepsy before seeking treatment; to assess the relationship between seizure severity and the knowledge, attitude, and perception of parents; to develop guidelines for addressing socio-cultural barriers to treatment and improve knowledge, attitude, and perception of parents.

The study used a descriptive research design. To illustrate the findings from this part of the study, two case studies were used.

Data were collected from out-patient consultations in the neurology department of a tertiary referral center in South India. The sample size was determined through a pilot study and previous studies. Sixty parents of children with epilepsy were recruited, who attended the out-patient services regularly and met exclusion and inclusion criteria consecutively.

The participants’ were 18 years of age or older, having children affected by generalized or partial seizures in the 4–15 age-group. Parents of children with co-morbid diagnosis of attention deficit hyperactivity disorder, autism, intellectual developmental disorder (IDD)/mental retardation, and cerebral palsy were also included. Children diagnosed with pseudo and febrile seizures, neuro-degenerative diseases of infancy and childhood, or any other medical or psychiatric illness were excluded.

The researchers compiled socio-demographic profiles of the children and parents that included their background information as well as the children’s seizure details by scheduling semi-structured interviews.

Scales10 were administered for seizure severity and side-effects. The seizure severity scale focused on consciousness, motor symptoms, incontinence, injuries, pain, and overall severity. The side-effects scale consisted of two subscales: one that measured toxicity, which is severity of medicine dose-related side-effects and another that measured chronicity, the severity of long-term behavioral and cognitive side-effects. The scale’s items represented the following areas of content: a good internal consistency (Cronbach’s alpha, 0.85) and a high test-retest correlation of 0.93. Scoring determined the mean, that is a value > 2 standard deviation (SD) and higher than the lowest possible score and a 3 SD that was lower than the highest possible score.

The face and content validation of the knowledge, attitude, and perception questionnaire prepared by the researcher was done by experts in the field comprising three psychologists, three neurologists, three social workers, and three nurses working in the Pediatric Neurology Ward. Their suggestions were incorporated before preparing the questionnaire’s final draft.

Experts prepared and validated the guide for the qualitative interviews. It was used to conduct interviews with parents using individualized themes to assess their explanatory model of illness, cultural and religious beliefs, and community practices.

The above findings and themes derived were used to prepare guidelines for addressing socio-cultural barriers to treatment as well as to improve knowledge, attitude, and perception of parents having children with epilepsy based on literature search, reviews, and existing cross-cultural guidelines. Experts such as pediatric neurologists, child psychiatrists, psychologists, social workers, and nurses working with children with epilepsy were interviewed and their opinions were also incorporated.

Parents bringing their children with epilepsy for out-patient consultation and who had been coming regularly for follow-up in the last one year to the neurology department of a tertiary referral center in South India during July 2015 to December 2015 were recruited based on their children’s medical reports and diagnosis by two independent neurologists. Parents who fitted the inclusion-exclusion criteria were contacted and explained about the nature of the study, confidentiality, and their right to withdraw. Their written consent was taken before they participated in the study. The researcher read out the questions and marked the answers for parents who were illiterate.

The researcher then spent some time with the child and built initial rapport by engaging the child in coloring tasks or solving a puzzle so that the parents could be interviewed.

Parents who were taken for the case studies were seen for 8 to 10 sessions. Personal interviews and observation were used focusing on themes such as their understanding about their child’s seizure condition, explanatory models of illness, their cultural beliefs and religious practices, community resources in the form of first line of treatment or alternative treatment modalities that had been utilized before coming to the hospital. Based on the understanding acquired from the assessment, the guidelines for interventions were developed to improve parents’ knowledge, attitude, and perception. It included a detailed family psychoeducation module, wherein a medical explanatory model was used to educate parents on epilepsy, address myths and misconceptions related to their child’s illness, safety, and injury prevention measures. The intervention also focused on re-orienting parental expectations regarding their child’s recovery, addressing inconsistencies in parenting, improving parent-child interactions, providing support and guidance. The module also incorporated supportive psychotherapy by focusing on venting their feelings, concerns, fears, or frustrations and validating and normalizing them. Parents were also helped to adjust in their loss and grief as well as provided support in their respective role change and adaptation efforts. Some relaxation techniques to help them deal with their anxiety related to the uncertainty of their child’s illness were also discussed with them.

The data from the questionnaires were analyzed using descriptive statistics like frequency and percentage and non-parametric tests like Spearman rho. Using the case study method, selected parents and children were studied in detail and presented through case vignettes. Possible psycho-social interventions and appropriate referrals were provided to the children and their family members.

Ethical clearance was taken from the Institute’s Ethics Committee of National Institute of Mental Health and Neuro Sciences (NIMHANS; IRB No.: NIMHANS/IEC/2015) before conducting the study. A written consent was also taken from all the parents prior to their participation in the study. To protect the privacy of all the parents and children who participated in the study, their names were changed and identifying information was excluded.

The table shows that the majority of the parents were in the 25 to 35 age-group with a mean age of 37.2 years, 71.7% were males, 36% were educated up to secondary/intermediate level. Of these, 43.3% did semi-skilled jobs, 66.7% had a monthly family income of RS6,000–10,000, 55% of the children came from nuclear families, and the mother was the primary caregiver for 85% of the children.

Clinical profiles were assessed by reviewing case files and treatment details. The children’s mean age was 8.4 years with 40% being in the 6–10 age-group. The children affected with epilepsy comprised 66.7% males. The findings also showed that the average number of children had generalized seizures that had been controlled for only 26.7% of the children. In terms of co-morbid conditions, 26.7% had cerebral palsy, followed by 16.7% with IDD. Other associated problems along with seizures were 31.7% memory problems followed by 23.3% having difficulty in speech, temper tantrums, and anger outbursts.

Seizure severity and a side-effects scales10 were administered to assess the severity of seizures and the side-effects of anti-epileptic medication. The assessment showed that the maximum number of parents reported that their child had motor symptoms like decreased consciousness, urine incontinence, postictal headache/pain, and tongue biting. Around 52.5% parents reported that their children resumed normal activity within a few minutes to an hour after a seizure episode. In terms of side-effects of medication, 80.3% children had toxic side effects like dizziness, 80.3% had loss of appetite, 73.8% had chronic side effects like behavioral disturbances, and 68.9% threw temper tantrums.

Assessment of parents’ knowledge, through administering questionnaires revealed that of the 96.7% who had heard about epilepsy, for 37.7%, the source of information had been relatives and friends; 86.9% had known a person with epilepsy, 82% knew their child’s diagnosis, 52.5% had misconceptions about seizures being a mental illness, 37.7% felt it was caused by evil spirits, 44.3% had poor awareness about safety and injury prevention, were unaware that medicines had to be kept out of reach of children and were worried about the side-effects of medicines, while 98.4% felt that if they missed their follow up date then a double dose of medication would be required till the next follow up. The future risk factors and potential consequences identified included 41% with memory problems and 27.9% with difficulty in communication, speech, and comprehension. Parents who responded to their children’s seizures by restraining them were 78.7%, while 88.5% put objects between the teeth, and 96.7% placed a bunch of keys in their hand, a shoe or an onion on the person’s nose, or applied oil.

In terms of attitude, 50.8% of the parents felt that persons with epilepsy could get married, 63.9% felt they could have children, 85.2% had no problem in allowing their child to play with a friend who had epilepsy, 62.3% encouraged their child to continue schooling despite a seizures disorder, 95.1% prevented their child from participating in sports activities, only 11.5% were willing to allow their child to get married to persons with epilepsy, 16.4% were willing to employ a person with epilepsy, 80.3% believed that children with epilepsy required more social and practical support for psycho-social development, 72.1% consulted faith-healers or holy men for treatment, 91.8% visited holy places or performed “mannat”, and 95.1% had a lot of concern about disclosing their child’s illness.

With regard to perception about illness, the average number of parents blamed or considered their child a misfortune when upset, worried a lot, and were concerned about their child’s life. Around 85.6% of the parents were angry with God/life, 85.2% had the ‘what-after me’ issue, 88.5% were over-indulgent with their child, 93.4% found it difficult to entrust their child’s care to someone else, and 95.1% were apprehensive about disclosure of seizures.

This table depicted that there was a strong positive correlation between parental attitudes and seizure severity (−0.234; p<0.01) exhibiting that with an increase in severity of the child’s seizures, the scores on parental attitudes also increased thus indicating a negative attitude and vice versa. Seizure severity was positively correlated with perception (0.203; p<0.05) indicating that as the severity of the seizures increased, scores on perception also increased thus indicating poor perception.

“If the child is taken to a baba and gets cured, then the hospital issue is ignored,” says Deepa’s father.

Deepa, an engaging and spirited fourteen-year-old girl was studying in standard VIII. Her parents were quite excited to talk about her academic achievements. She was referred to a tertiary hospital with symptoms of complex partial seizures and was experiencing one or two episodes once in 10 days lasting for a few seconds. It was an unexpected event for the entire family and the parents were unwilling to accept that the kind of symptoms the girl had could be seizures. Parents’ explanatory model was magico-religious and they sought religious treatment influenced by their relatives. The family has spent almost RS50,000 on a faith healer for performing the rituals and ceremonies. Her parents have also tried various methods suggested by relative and friends to control seizures like holding the girl tightly in their arms and reading prayers in her ears during an episode of seizures. A major crisis occurred in the family when after two months of starting treatment and therapy, the girl’s father passed away in a road traffic accident. This was an event that had intense repercussion on the family. The family went into a severe financial crunch as the father was the primary breadwinner and after his death, the mother would remain ill most of the time as she was unable to cope with his death. Forced to grow up suddenly due to her mother’s illness, father’s demise, and lack of support for the family, the girl showed maturity beyond her years. Things came to a further crisis when she attained menarche. They belonged to community where a lot of significance was attached to this milestone in development. Once girls attain menarche, their freedom of movement was very much restricted. It brought many psychosocial and emotional changes in the girl and throughout this period she got support of her mother and elder sister which helped her to cope quite well with those changes.

“We have “lost” our son, as his life is totally ruined by epilepsy. He cannot be independent and hardly goes out of the house,” says Raju’s father.

Raju was just over six years, when he came to NIMHANS. When he spoke, his speech was unclear and his parents had to hold him on their lap as he would often fall down while walking. He had continuous drooling from his mouth and needed help to carry out self-care activities. The boy was diagnosed with generalized tonic-clonic seizures and got seizures 12–15 times a day, which lasted for few seconds. He had difficulty in walking and expressing his needs because of his frequent seizures. He was born after 20 years of marriage following several miscarriages. It was evident that there was significant emotional investment from the parents on him as he was the youngest child, who was conceived with great difficulty. To cure him from epilepsy, their village head told the family to perform rituals to honor the family’s ancestral spirits, involving performing ceremonies and giving feasts for village elders. The family took a loan of RS75,000 to perform the ceremony but his seizures did not stop. It was apparent that the parents were experiencing a significant emotional crisis about how they would ensure continuity of treatment and medication in the long run as they did not have money to buy medicines and valid documents to avail BPL benefits at the hospital. Parents had come to the tertiary hospital with high expectations that their child would get cured and become normal in terms of mobility and speech. A major marital crisis occurred at the time when the child went ‘off his feet’ and required to be carried all over the place.

A guideline was developed to improve knowledge, attitude, and perception of parents as well as to address the socio-cultural barriers to treatment that was based on the ethno-centric perspective. This perspective states that ethnic and cultural values affect a person’s perception of health, reaction to illness, treatment-seeking behavior, and trust in the treatment process. So, it was important to take into consideration social, cultural, and psychological factors that may influence parents’ response to the management of epilepsy. The guidelines identified important issues that medical practitioners should focus on: Praise the family’s handling of the situation so far; Encourage family members to vent their concerns, fears and difficulties encountered in managing their child’s illness; Emotional support needs to be provided to parents throughout the treatment process by normalizing their feelings and validating their concerns. They need information and support especially when faced with difficult decisions such as whether new treatment options (e.g., surgical treatment should be explored) that may seem terrifying to them; Assess the alternative healing practices that have been utilized by the family as some practices involve herbs and ayurvedic treatments that may counteract the prescribed medicines; The family will be reluctant to disclose that they are trying alternative treatment modalities in fear of being judged as ‘backward’ by the medical practitioner. Respect the choices made by the family and support these remedies unless they are contraindicated or harmful; Explore the family’s understanding about epilepsy. Thereafter, educate them about epilepsy by using the medical model, giving statistical data, and the biological causes of illness. Make sure to refute moral or religious causes of epilepsy; Address parents’ myths and misconception about epilepsy, its causes, and consequences; Educate them about what can trigger seizures, side-effects of anti-epileptic medicines, safety and injury prevention measures, how seizures could affect their child’s learning, and how the family could help by employing a positive parenting style; Ask the family to share their understanding of the information provided; Parents’ reaction to their child’s illness sets the stage for the child’s own interpretation of its significance. So, parents should be provided with information regarding disclosure about epilepsy to the child – when and how to do it.

Dos and don’ts for medical practitioners: Communicate in a simplified manner without using medical jargon; Encourage the family to ask questions; Information has to be disseminated in a language preferred by the family members. If not fluent in that language, refer to a colleague; Do not ridicule the family for spending money on religious treatment; Cultural sensitivity and a non-judgmental attitude are two pre-requisites for effective therapeutic relationships; Ensure confidentiality by reiterating it again and again, throughout the interview and intervention process.

Some of the constraints in generalizing this study’s findings are small sample size, its being cross-sectional in nature, time constraints, and sampling bias. The questionnaire developed to assess parents’ knowledge, attitude, and perception is in the process of validation and further studies are needed to establish its psychometric properties.

The present study’s results would help to develop interventions by keeping in mind the social ecological model. The model states that there is a reciprocal relationship between children with epilepsy and the systems surrounding them like family, school, peers, health care providers, and the cultural systems. The guidelines prepared for addressing socio-cultural barriers would be further validated and tested for efficacy.

From a community organization and social action perspective, there is a need to mobilize support from different stakeholders such as NGOs, community-based organizations, community leaders, and policy makers who can act as change agents to sensitize the general public by addressing the myths and misconception related to epilepsy and community-based treatment and rehabilitation programs in rural areas.

Parents’ negative attitudes and poor perception cannot be entirely attributed to epilepsy as most of these children had co-morbid conditions that led to poor outcome in the form of impairment in their daily living activities, behavioral problems, as well as poor psychological and social development. There is a need for cross-cultural accommodation where health care providers involve client and family members in the treatment by taking into consideration socio-cultural and medical factors for illness description, management plans, and follow-up activities. A management plan for addressing socio-cultural barriers to treatment that affect parents’ knowledge, attitude and perception towards epilepsy should incorporate culturally sensitive practices by clinicians, understand parents’ religious and spiritual values, be able to empathize, respect, and appreciate the efforts made by family members to cope with chronicity of the child’s illness, sense of helplessness, and feelings of guilt for failing as a parent.