A Comparative Study to Assess the Knowledge of Caregivers of People with Epilepsy and General Public Regarding Epilepsy and its First- Aid Management

 

Dinta Suresh1, Ms. Meena Aggarwal2, Dr. Achal Srivastava3, Dr. Mamta Bhushan Singh3

1College of Nursing, AIIMS, New Delhi

2Lecturer, College of Nursing, AIIMS, New Delhi

3Associate Professor, Department of Neurology, AIIMS, New Delhi

*Corresponding Author Email: dinta.suresh@gmail.com

 

ABSTRACT:

Background and purpose: Epilepsy is an episodic illness which requires prompt treatment for good outcome. Seizures can develop at any time. Hence first-aid management of seizures is important. The aim of the study was to assess the knowledge of caregivers of people with epilepsy and general public regarding the first-aid management of seizures.

Materials and methods: A descriptive cross-sectional survey was conducted from June 2009 to December 2009 in 200 subjects, i.e.100 caregivers of persons with epilepsy attending epilepsy OPD and 100 general public who were visiting the other general OPDs. The data was collected using a structured questionnaire.

Results: The findings of the present study in relation to the demographic variables age (p=0.001), education (p=0.05) and type of family (p=0.002) showed a significant difference in two groups. On comparison of two groups in relation to knowledge about epilepsy and its first-aid management showed that they had inadequate knowledge. Myths regarding epilepsy were common in both the groups like epilepsy a contagious disease (general public 83%, caregivers 36%), marriage can cure the disease (general public 69%, caregivers 73%), and epilepsy is not treatable (general public 12%, caregivers 17%). The common wrong first-aid measures which are reported by both the groups include keeping an object between the teeth (caregivers-56%, general public-49%), pulling the tongue out (caregivers-67%, general public-74%) ,smelling the shoes (caregivers-52%, general public-45%) .Among caregivers female gender had an influence on knowledge about epilepsy whereas no significant association was seen in caregivers between age, sex, educational status, monthly income and knowledge about first-aid. But in general public, age of the subjects showed an influence on the knowledge about epilepsy whereas knowledge about first-aid management of seizures was influenced by educational status.

Conclusions: This study revealed that the both caregivers and general public had inadequate knowledge regarding epilepsy and its first-aid. They need continuous ongoing health education. The need of the hour is to provide necessary inputs via developing a module which will act as a reference material.

 

KEYWORDS: epilepsy, first-aid management, seizures, health education, people with epilepsy.

 

 

INTRODUCTION:

According to WHO survey epilepsy accounts for 1% of the global burden of diseases. India alone has approximately 8–10 million people suffering from epilepsy (WHO)1. The impact of epilepsy is not only on the person with epilepsy but also the family and indirectly the community is affected. The lack of awareness and understanding about the epilepsy will foster a sense of fear, misunderstanding and even discrimination in the community2. Fear, misunderstanding and the resulting social stigma and discrimination surrounding epilepsy often force people with this disorder ‘in to the shadows’. The social effects may vary from country to country and culture to culture, but it is clear that all over the world the social consequences of epilepsy are often more difficult to overcome the seizures themselves. Research evidence shows that the reasons for the patients to follow faith based rituals and wrong practices without seeking proper medical treatment are due to lack of knowledge about the epilepsy and its management3.

 

The unpredictability of seizures makes people with epilepsy feel insecure and vulnerable to complications. Studies have reported that even though awareness of epilepsy was high, negative attitudes were still prevalent regarding the knowledge, attitudes and practices of epilepsy4,5. The main predictor of negative attitudes was advanced age, lack of formal education, and the belief that epilepsy is hereditary, contagious or a form of insanity4. Research evidence from various studies showed that caregivers and public resort to wrong practices that could endanger the life of people with epilepsy6,7. Smelling onions, oral administration of cold water, reading religious text and insertion of mouth gag were common practices reported by parents when a child has convulsions6. Many studies have concluded that Epilepsy education programmes play a vital role in enhancing the knowledge and awareness of epilepsy and their by strengthen appropriate practices in epilepsy care at the individual, family and community level.

 

NEED OF THE STUDY:

Patient education in epilepsy focuses heavily on disease knowledge and self care but a little knowledge on first-aid management of seizures.  Although the first-aid of a person with epilepsy is a crucial area which needs to be addressed, it is often neglected. Therefore knowledge and awareness regarding the first-aid management of seizures is essential to provide optimum care and to prevent complications due to wrong practices which can endanger the life of the patients with epilepsy.  There is a need to evaluate the knowledge regarding first-aid management of seizures, so as to promote appropriate practices to prevent further harm to the patients. Hence the present study is aimed to evaluate the knowledge regarding the first-aid management of seizures among caregivers and general public.

 

OBJECTIVES OF THE STUDY:

1.        To assess the knowledge regarding the first aid management of  seizures in caregivers of persons with epilepsy and general public

2.        To compare the knowledge regarding the first-aid management between the caregivers and general public

3.        To develop a module for first aid management of seizures.

 

MATERIALS AND METHODS:

A descriptive cross-sectional survey design was used to assess the knowledge of caregivers of people with epilepsy and general public regarding the first- aid management of seizures. The subjects fulfilling the inclusion criteria were enrolled in the study using convenient sampling technique. Taking into account the availability of subjects and the time, a sample size of 200 was enrolled (100 each group). The study was conducted in the Epilepsy clinic in neurology OPD and other general OPDs of All India Institute of Medical Sciences from June2009 to December 2009. Content validity of the tool was established by 1 medical expert and 3 experts, from nursing field. The questionnaire was translated to Hindi with the help of experts from Hindi section AIIMS. Ethical clearance for conducting this study was obtained from the Ethics Committee, AIIMS.

The following tools were used for data collection in the study:

1.        Questionnaire on Demographic profile

2.        Structured questionnaire on knowledge about epilepsy and its  first-aid management

 

1.        Tool no:-1-Demographic profile

A tool on the demographic profile with 12 items related to caregivers (Annexure I) and 10 items related to general public (Annexure II) was prepared to collect data from subjects in consultation with guide and co-guides.

2.        Structured questionnaire on knowledge about epilepsy and its  first-aid management

 A structured questionnaire consisting 25 items regarding epilepsy and its first-aid management was developed to collect data from subjects. The minimum score is 0 and the maximum score is 25. The reliability co-efficient r=0.96.

 

Methods of data collection:

The study was conducted in the Epilepsy clinic in neurology OPD and other general OPDs of All India Institute of Medical Sciences from June2009 to December 2009. The caregivers of people with epilepsy and general public, who met the inclusion criteria, were enrolled in the study. A letter explaining the purpose of the study was given to the subjects. Informed Consent form was taken from the participants. The questionnaire was administered and required information was collected.

RESULTS:

The data collected was first coded and then summarized in the master data sheet (Annexure IX) and analyzed by using SPSS version 14. Descriptive and inferential statistics such as mean, standard deviation, frequency, percentage, chi square student t test and one way ANOVA were used. The p value is significant at p<0.05.


 

Table 1: Demographic characteristics of two groups                                        N=200

Demographic Variables

Caregivers

N=100

General public 

N=100

p-value

Frequency (%)

Frequency (%)

 

Age

20-34

35

35%

17

17%

 

p=0.001*

35-49

49

49%

74

74%

50-65

16

16%

9

9%

Gender 

Male

55

55%

64

64%

 

p=0.249

Female

45

45%

36

36%

Marital status

Unmarried

20

20%

16

16%

 

p=.581

Married

80

80%

84

84%

Education

Illiterate

16

16%

7

7%

p=0.05*

Till 12th

60

60%

57

57%

Above 12th

24

24%

36

36%

Occupation

Student

4

4%

5

5%

p=0.67

employee

59

59%

73

73%

unemployed

37

37%

22

22%

Area of residence

Rural

27

27%

40

40%

 

p=0.149

Urban

62

62%

51

51%

Semi urban

11

11%

9

9%

Monthly income

≤5000

42

42%

50

50%

  p=0.459

5001-20,000

44

44%

40

40%

>20,001

14

14%

10

10%

 

Joint

68

68%

86

86%

p=0.002*

Type of family

Nuclear

32

32%

14

14%

 

 

Table 1 shows that the two groups were comparable with respect to the demographic variables like sex, marital status, occupation (p<0.05).Majority of the subjects in both the groups belong to the age group of 35-49 i.e. caregivers 49% and general public 74%. The mean age of the caregivers was 40.97±10.27 and that of the general public were 41.21±8.1. The proportion of females in caregivers and general public were only 45% and 36% respectively.

 

Objective I: To assess the knowledge of caregivers and general public regarding epilepsy and its first-aid management.

Table 2-Knowledge scores of two groups regarding epilepsy and its first-aid management of seizures

Knowledge on

Group-1(caregivers)

Mean± SD

Group-2(general public)

Mean± SD

Epilepsy

7.19±2.69

7.19±2.65

First-aid management of seizures

6.53±2.21

6.11±1.96

 

Table:2 shows that knowledge regarding epilepsy and its first-aid management of seizures were almost same among caregivers and general public.

 

Objective II: To compare the knowledge of caregivers and general public regarding epilepsy and the first-aid management of seizures.

 

Table 3: Comparison of Knowledge scores of two groups in relation to epilepsy and first-aid management of seizures

Knowledge on

Group-1(caregivers)

Mean± SD

Group-2(general public)

Mean± SD

Epilepsy

7.19±2.69

7.19±2.65

First-aid management of seizures

6.53±2.21

6.11±1.96

Independent t test (p<0.05)

 

The mean knowledge scores of caregivers and general public regarding epilepsy was higher in comparison with the scores of first-aid management of epilepsy. It shows that both caregivers and general public lack knowledge on first-aid management of epilepsy.

 

DISCUSSION:

The present study showed that the majority of the subjects in both the groups had inadequate knowledge about epilepsy and its first-aid management. The mean knowledge score of caregivers and general public regarding epilepsy were 7.19±2.69 and 7.19±2.65 respectively and that of first-aid management was 6.53±2.21 for caregivers and 6.11±1.96 general public. In contrast to the present study McEwen L et al8 found that the caregivers of people with epilepsy have high levels of knowledge about various aspects of epilepsy. Comparison of two groups in relation to the knowledge and first-aid management of epilepsy showed no significant difference in this study. There are lacunas in the knowledge regarding epilepsy and its first-aid management in two groups, i.e. both caregivers and general public. The findings were consistent with the studies done by Anup K. Thacker et al (2008)5 and Ndour D, Diop et al (2004)7 which showed that the negative attitudes and wrong practices in first-aid management of seizures prevailed. The first-aid measures practiced were inappropriate and were potentially harmful. The findings of the present study showed that knowledge about epilepsy was higher in females among caregivers and general public which was consistent with studies done by of Rosemarie Kobau and Patricia Price (2003)10. However lack of knowledge regarding first-aid management of epilepsy was seen among caregivers and general public. Similar findings were reported by Alisson Roberto Teles et al (2007)10 and S. Choi-Kwon et al (2004)11.Certain myths about epilepsy were common in two groups but majority of general public had higher percent of myth than caregivers. Epilepsy a contagious disease general public (83%) caregivers 36% and marriage a cure for epilepsy, general public (69%) caregivers (73%) and epilepsy a not treatable disease general public (12%), caregivers (17%) were the common myths. Similar findings were reported by various studies 12,13,14,15. The common wrong first-aid measures which are reported by both the groups include keeping an object between the teeth (caregivers-56%, general public-49%), pulling the tongue out (caregivers-67%, general public-74%) ,smelling the shoes (caregivers-52%, general public-45%) and  performing  prayers to remove the evil spirits (caregiver-45%,general public-49%).Majority of subjects in caregivers were following wrong first-aid measures during seizures in comparison to general public.

 

CONCLUSION:

Based on this scientific evidence it is concluded that

·         There were no difference in the knowledge score of caregivers and general public regarding epilepsy and its first-aid management. Both the groups had inadequate knowledge in relation to first-aid management of seizures in comparison to epilepsy.

·         The myths about epilepsy were higher in general public than caregivers.

·         Structured health teaching modules, pamphlets are effective in improving the knowledge about epilepsy and its first-aid management.

·         Specific guidelines on first-aid management of seizures are essential to enhance the quality of care of persons with epilepsy.

 

 

LIMITATIONS:

·         The study was done only in 200 subjects which is comparatively small for generalisation

·         It is a single centred study.

·         Lack of reliability of self reported measures.

 

REFERENCE:

1.        World Health Organisation-Epilepsy: Out of Shadows-from prejudice to hope

2.        Hung TF. Psychosocial impact of epilepsy and its impact and issues of stigma. The Hong Kong medical diary 2009; 14(5): 15-17

3.        World Health Organisation Atlas Epilepsy Care in the world 2005 .p.11

4.        Njamnshi AK, Angwafor SA , Tabah EN, Walinjom PJ, Muna FT. Epilepsy and Behavior. 2009 Jan; 14(1): 83-88.

5.        Thacker AK, Verma AM, Ji R, Thacker P, Mishra P. Knowledge awareness and attitude about epilepsy among school teachers in India. Seizure. 2008 Dec; 17(8): 684-690.

6.        Bavdekar S, Ghule R, Jadhav S. Healthcare-seeking behavior after seizures in children. Indian Journal of Medical Sciences. 2008 Aug; 62(8): 331-335.

7.        Ndour D, Diop AG, Ndiaye M, Niang C, Sarr MM, Ndiaye IN. A survey of school teachers’ knowledge and behaviour about epilepsy, in a developing country such as Senegal. Revue Neurologique 2004 Mar; 160(3): 338-341.

8.        McEwan L, Taylor J, Casswell M, Entwistle R, Jacoby K, Gorry J, Jacoby A, Baker GA. Knowledge of and attitudes expressed toward epilepsy by carers of people with epilepsy: A UK perspective. Epilepsy and Behavior. 2007 Aug; 11(1): 13-19.

9.        Kobau R, Price P. Knowledge of epilepsy and familiarity with this disorder in the U.S. population: Results from the 2002-Health Styles Survey. Epilepsia. 2003 Oct; 44(11): 1449-1454.

10.     Falavigna A, Teles AR, Velho FR , Roxo MR, Bosco AL et al. Awareness, attitudes and perceptions on epilepsy in southern brazil.Arq. Neuro-Psiquiatr. 2007 Dec; 65(4b): 1186-91.

11.     Choikwon S, Park KA , Lee HJ, Park MS, Lee CH, Cheon SE etal. Familiarity with, knowledge of, and attitudes toward epilepsy in residents of Seoul, South Korea. Acta Neurologica Scandinavica. 2004 Apr 13; 110 (1): 39 – 45.

12.     Başer M, Coban S, Taşci S, Sungur G, Bayat M. Evaluating first-aid knowledge and attitudes of a sample of Turkish primary school teachers. Journal of Emergency Nursing. 2007 Oct; 33(5): 428-32.

13.     Shore CP, Susan M, Perkins JK, Austin. The Seizures and Epilepsy Education (SEE) Program for families of children with epilepsy: A preliminary study. Epilepsy and Behavior 2008 Jan; 12(1): 157-164.

14.     Ismail H, Wright J, Rhodes P, Small N, Jacoby A.  South Asians and epilepsy: Exploring health experiences, needs and beliefs of communities in the north of England. Seizure 2005 Oct; 14(7):  497-503.

15.     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 and Behavior 2006 Nov; 9(3): 492-497.

 

 

 

Received on 07.11.2016          Modified on 20.12.2016

Accepted on 28.01.2017          © A&V Publications all right reserved

Asian J. Nur. Edu. and Research.2017; 7(2): 147-150.

DOI: 10.5958/2349-2996.2017.00029.5