|Year : 2019 | Volume
| Issue : 4 | Page : 204-206
Talk to parents: Bridge the knowledge gap in parents with epileptic children
Alexis Varghese1, Monika Sharma2
1 Department of Medicine, Lehmann Christian Hospital, Herbertpur, Uttarakhand, India
2 Department of Pediatrics, Christian Medical College and Hospital, Ludhiana, Punjab, India
|Date of Submission||09-Jan-2019|
|Date of Decision||14-Mar-2019|
|Date of Acceptance||07-Jul-2019|
|Date of Web Publication||21-Nov-2019|
C/O Mrs. Mercy Samuel, Directors Office, Christian Medical College and Hospital, Ludhiana - 141 008, Punjab
Source of Support: None, Conflict of Interest: None
Introduction: Parents' attitudes toward children with epilepsy may be influenced by their knowledge of the condition. Parental knowledge regarding epilepsy, its long-term management, likely events, and outcomes is essential in appropriate care of their children. This study was undertaken to identify the level of and possible gaps in knowledge of parents. Methodology: This prospective cross-sectional study was carried out in a tertiary care center, in which 50 caregivers of children with epilepsy took part, after due consent. Data were on a predesigned questionnaire which included questions addressing the type of epilepsy, parents' knowledge of etiology, treatment, untoward events, drug side effects, and emergency care. Observations and Results: Of 50 caregivers, only half of the parents were able to mention the cause of seizures in their child. Half of the parents thought that epilepsy affects intelligence of the child. Most of the parents, i.e., 96% were okay with talking about their child's condition with the family. Most parents (55.93%) brought their children to hospital for emergency care, while 10.16% knew some first aid for acute seizure. Parents of children on polytherapy (41.67%) were more aware of side effects of medicines as compared to parents of children on monotherapy (10.53%) (P = 0.014). Conclusion: Even though a sizable proportion of parents know about the cause of epilepsy in children, very few were equipped with knowledge of first aid care during a seizure. Lack of awareness of drug side effects is another major gap that doctors dealing with epileptic children must address, while talking to parents.
Keywords: Attitude, first aid for seizure, medication for epilepsy, parental knowledge
|How to cite this article:|
Varghese A, Sharma M. Talk to parents: Bridge the knowledge gap in parents with epileptic children. CHRISMED J Health Res 2019;6:204-6
|How to cite this URL:|
Varghese A, Sharma M. Talk to parents: Bridge the knowledge gap in parents with epileptic children. CHRISMED J Health Res [serial online] 2019 [cited 2020 May 27];6:204-6. Available from: http://www.cjhr.org/text.asp?2019/6/4/204/271333
| Introduction|| |
Epilepsy is the most common neurological disorder that affects 65 million people worldwide. Studies from India mention a prevalence of 3.1–10/1000 population.,,,,, Knowing about epilepsy and its care lowers parental anxiety and prevents restrictions on a child's routine activity., Overall, parents' attitudes toward children with epilepsy are significantly influenced by their knowledge of the disease.,, In a busy pediatric OPD, physicians tend to focus on care of the illness and might miss out on important aspects in parent education. We planned this study to evaluate knowledge of parents of children on medication and to guide health professionals in parent education programs.
| Methodology|| |
This prospective cross-sectional study was carried out in pediatrics department in a tertiary care center in North India. Fifty caregivers of children with epilepsy took part in this study after consent. The questionnaire included the demographic details of parents and questions related to knowledge, attitude, and practices of parents of children with epilepsy. Parents of children ≤18 years with epilepsy on treatment for ≥6 months were included. Parents of children with any other chronic illnesses were excluded.
The permission was taken from Institutional Ethics Committee prior to starting the project. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
| Observations and Results|| |
An attempt was made to interview the primary care givers. 34 (68%) respondents were mothers, 15 (30%) were fathers, and there was 1 (2%) grandmother. Majority of the parents in this study were in the age group of 20–40 years (43 [86%]).
Only half of the parents knew the cause of seizure such as fever (18.18%), central nervous system infection (3.64%), vaccination (1.82%), birth problems (1.82%), head trauma (1.82%), and others (27.27%). All respondents considered medicine to be the only reliable treatment for epilepsy.
Half of the parents thought epilepsy affects intelligence of the child; 76% parents thought their child can attend school and 54% parents were willing to send children for school picnics. 96% parents were comfortable talking about their child's condition within family, 66% with their neighbors, and 44% parents had talked about it to the school staff.
55.93% parents preferred hospitals for emergency care. 10.16% said they would put the child on the side or lay down. Only 3.39% parents were aware of nasal midazolam. 33.90% parents considered massaging the body or physical restraint as emergency care. Nearly 10% parents felt prayer, calling out to the child, and pouring water on the face helped during a seizure.
Only 4% of the parents of children (on polytherapy) had ever missed medications in the month before this study.
18% of the parents were aware of side effects of the medications such as kidney stone (20%), increased sleep (20%), pneumonia (10%), aggressive behavior (10%), and liver problem (10%). 88% parents approached doctors, and the rest tried to gather information on their own.
Parents of children on polytherapy were more aware of side effect of medicines than those on monotherapy. Parents of children having epilepsy with Neurodevelopmental disorder (NDD) more often thought that epilepsy affects intelligence of the child. Parents of children having epilepsy with NDD thought that their children can attend school normally, more than parents with children having normal neurodevelopment. Developmentally normal children were also more likely to be allowed to go to a school picnic compared to those with NDD.
| Discussion|| |
Parents generally understand that epilepsy originates from the brain. This is also why many patients believe that as their child has epilepsy, he/she is “mentally” affected. Similar to the study by Pandian et al., half of the parents in our study related epilepsy to brain and intelligence. In a 2008 study with teachers, by Thacker et al., 47.7% teachers felt that children with epilepsy should continue schooling. Nearly 76% parents in our study felt the same.
Social stigmatization affects the mental health of the child and family. In a study from South India, 45.1% students thought that society should treat epileptics differently and 13% students actually objected to playing/studying with an epileptic child. Similarly 38.4% teachers, interviewed by Thacker et al., had reservations about letting children with epilepsy mingle with nonepileptics. Some of the respondents in our study also had reservations. 34% of the parents in our study did not share their child's ailment with neighbors and 24% did not send children to school at all. This attitude was stronger among parents of children with a neurodevelopmental disorder (NDD), with nearly half of children with NDD being not sent to school.
Understanding the cause gives parents a better understanding of treatment and improves compliance. Parmar et al. observed that unlike epilepsy, 91.4% of parents of children with febrile seizures knew that fever precipitated seizures. 10.4% teachers interviewed in the study by Thacker et al. thought that epilepsy was genetic, while 8.5%, 3.3%, and 3.5% teachers considered head injury, infections, and brain disease to be the cause, respectively. Nearly half of the respondents in our study were not sure about the etiology of their child's epilepsy.
Knowledge of emergency handling of seizures is another area of concern. Goel et al. mention that 49.8% of class 12 students and 55.93% of parents interviewed by them would consider taking a child with a fit to hospital. Thacker et al. observed that only 16.3% of teachers knew of proper first aid and 57.3% described improper care. Only 10.16% parents who responded in our study were clear about seizure first aid. The rest even mentioned harmful techniques such as splashing water on the face.
39% of students interviewed in the study by Pandian et al. felt that a Priest can treat epilepsy. Even in our study, 2% felt that praying to God would cure their child. The encouraging finding in our study is that all parents in our study relied on medicines, similar to 91.7% parents interviewed in a study by Gourie Devi et al. 96% of parents in our study reported to never missing their child's medicine.
Care giving and information-seeking behavior is affected by one's level of education and age of onset of illness. We observed that parents who had higher educational qualifications, whose children were younger than 10 years, and on polytherapy were more aware of the cause of epilepsy, first aid for an acute seizure, and medicine side effects.
| Conclusion|| |
Even though a sizable proportion of parents know about the cause of epilepsy in children, very few were equipped with knowledge of first aid care during a seizure. Lack of awareness of drug side effects is another major gap that doctors dealing with epileptic children must address, while talking to parents. As emphasized in earlier studies, there is a need for imparting proper knowledge to parents to allay their fears and misconceptions.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Thurman DJ, Beghi E, Begley CE, Berg AT, Buchhalter JR, Ding D, et al.
Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia 2011;52 Suppl 7:2-6.
Shah PA, Shapoo SF, Koul RK, Khan MA. Prevalence of epilepsy in school-going children (6-18 years) in Kashmir Valley of North-West India. J Indian Med Assoc 2009;107:216-8.
Radhakrishnan K, Pandian JD, Santhoshkumar T, Thomas SV, Deetha TD, Sarma PS, et al.
Prevalence, knowledge, attitude, and practice of epilepsy in Kerala, South India. Epilepsia 2000;41:1027-35.
Sridharan R, Murthy BN. Prevalence and pattern of epilepsy in India. Epilepsia 1999;40:631-6.
Gourie-Devi M, Gururaj G, Satishchandra P, Subbakrishna DK. Prevalence of neurological disorders in Bangalore, India: A community-based study with a comparison between urban and rural areas. Neuroepidemiology 2004;23:261-8.
Sridharan R. Epidemiology of epilepsy. Curr Sci 2002;82:664-70.
Goel D, Agarwal A, Dhanai JS, Semval VD, Mehrotra V, Saxena V, et al.
Comprehensive rural epilepsy surveillance programme in Uttarakhand state of India. Neurol India 2009;57:355-6.
] [Full text]
Li Y, Ji CY, Qin J, Zhang ZX. Parental anxiety and quality of life of epileptic children. Biomed Environ Sci 2008;21:228-32.
Hirfanoglu T, Serdaroglu A, Cansu A, Soysal AS, Derle E, Gucuyener K. Do knowledge of, perception of, and attitudes toward epilepsy affect the quality of life of Turkish children with epilepsy and their parents? Epilepsy Behav 2009;14:71-7.
Sell Salazar F. Psychosocial aspects of childhood epilepsy. Medicina (B Aires) 2009;69:3-7.
El Sharkawy G, Newton C, Hartley S. Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, Kenya. Epilepsy Behav 2006;8:201-12.
Parmar RC, Sahu DR, Bavdekar SB. Knowledge, attitude and practices of parents of children with febrile convulsion. J Postgrad Med 2001;47:19-23.
] [Full text]
Pandian JD, Santosh D, Kumar TS, Sarma PS, Radhakrishnan K. High school students' knowledge, attitude, and practice with respect to epilepsy in Kerala, Southern India. Epilepsy Behav 2006;9:492-7.
Thacker AK, Verma AM, Ji R, Thacker P, Mishra P. Knowledge awareness and attitude about epilepsy among schoolteachers in India. Seizure 2008;17:684-90.
Goel D, Dhanai JS, Agarwal A, Mehlotra V, Saxena V. Knowledge, attitude and practice of epilepsy in Uttarakhand, India. Ann Indian Acad Neurol 2011;14:116-9.
] [Full text]
Gourie Devi M, Singh V, Bala K. Knowledge, attitude and practice among patients of epilepsy attending tertiary hospital in Delhi, India and review of Indian studies. Neurol Asia 2010;15:225-32.
Bains HS, Raizada N. Parental attitudes towards epilepsy. Indian Pediatr 1992;29:1487-90.