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Table of Content - Volume 11 Issue 1 - July 2018


 

Knowledge, attitudes and practices with respect to epilepsy among accredited social health activists (ASHAs): A study from rural part of Karnataka

 

Anil Kumar B N1, Virupaksha K L2*, Sushma Rayappa3

 

1Department of Psychiatry, Shridevi Institute of Medical Sciences and Research Hospital, Tumkur, Karnataka, INDIA.

2Department of General Medicine, Shridevi Institute of Medical Sciences and Research Hospital, Tumkur, Karnataka, INDIA.

3Department of Psychiatry, Mysore Medical College and Research Institute, Mysore, Karnataka, INDIA.

Email: virukl2008@gmail.com

 

Abstract              Background: Epilepsy is the second most common neurological condition with large treatment gap. Knowledge, attitudes and practices with respect to epilepsy among grass root health workers is one of the important factors in addressing the treatment gap. This study aims at assessing the knowledge, attitudes and practices with respect to epilepsy among Accredited Social Health Activists (ASHAs). Materials and Methods: Data was collected from 500 ASHAs working in 10 taluks of Tumkur district, Karnataka using Socio- demographic profile sheet and questionnaire designed to evaluate knowledge, attitudes and practices with respect to epilepsy. Study design was cross- sectional. Results: All ASHAs were females with mean age of 34.9 years, 80.4 % of them with working experience of more than 3 years and 97.2 % of them have studied above secondary education (8th class onwards). 97.2 % had heard about epilepsy but at least one fourth ASHAs have not read or seen seizure. Most of them would object their children association and would not allow marriage to person with epilepsy (PWE). 87.0 % think epilepsy is contagious, while 79.0 % believe epilepsy is a form of insanity. Around half of them considered epilepsy is due to evil spirit and punishment from God. Conclusions: Lack of knowledge, negative attitudes and practices toward PWE are widely prevalent among ASHAs. Hence, there is strong need to organize more educational and training programs on epilepsy to reduce the treatment gap and to dispel myths and misconceptions about epilepsy.

Key Word: Person with epilepsy; Knowledge; Attitude; Practices; Health care worker

 

INTRODUCTION

Epilepsy is the second most common and frequently encountered neurological condition which affects 70 million people worldwide and nearly 90% of them are found in developing regions. As per studies done in developing countries, median prevalence of epilepsy among rural and urban population is 1.54% (0.48-4.96%) and 1.03% (0.28-3.8%) respectively and there are more than 12 million persons with epilepsy (PWE) in India.1 Epilepsy was estimated to account for 0.5% of the global burden of disease, accounting for 7,307,975 disability adjusted life years (DALYs) in 2005.2 Epilepsy causes heavy burden on individuals, families, and also on healthcare systems.3 In India, with around 12 million PWE and less than 2000 neurologists who mainly located in urban area, there is a huge need to strengthen epilepsy services, particularly in the rural and underserved areas.4 In view of providing equitable, affordable and quality health care to the rural population, especially the vulnerable groups, Government of India launched National Rural Health Mission (NRHM) in 2005 and one of the key components of this is to provide every village in the country with a trained female community health activist (ASHA or Accredited Social Health Activist). Selected from the village itself, the ASHA will be trained to work as an interface between the community and the public health system. She would be a promoter of good health practices. ASHA will be a health activist in the community who will create awareness on health and its social determinants and mobilize the community towards local health planning and increased utilization and accountability of the existing health services (NHM).5 Though epilepsy well-known for more than 2,000 years (as described by Hippocrates) and anti-epileptic medications are available for treatment, wide treatment gap exists. In India, magnitude of epilepsy treatment gap ranges from 22% among urban population to 90% in villages.6 So many patients are going untreated due to lack of knowledge, access to treatment, poverty, superstitions, cultural beliefs, stigma, and shortage of trained professionals.7,8 Empowering primary healthcare workers to identify, assess, manage and refer the patients to treatment network is an important step in reducing the treatment gap. In this regard, appropriate dissemination of information and awareness-raising about epilepsy among ASHAs are of paramount importance. Since NRHM launch there are no studies from India to assess knowledge, attitudes and practices of ASHAs towards epilepsy.

 

MATERIALS AND METHODS

Tumkur district in Karnataka state, India has 10 taluks. All ASHAs working in 10 taluks were called for a meeting. They were explained about the aim of the study. ASHAs who were willing to participate in the study were enrolled and subsequently written informed consent was taken. Socio- demographic profile sheet and questionnaire designed to evaluate knowledge, attitudes and practices with respect to epilepsy were distributed among them. They were asked to read the questionnaire first and ask in case of problem in understanding any question. After answering their queries, they were asked to fill the questionnaires. It was cross-sectional assessment. Study was approved by Tumkur District Health Officer and Shridevi Institute of Medical Sciences and Research Hospital Ethical Committee, Tumkur.

Socio-demographic profile sheet: It includes demographic details along with the additional information about working experience as health professionals and attending any epilepsy workshop.

KAP assessment questionnaire: It is a 13-item semi-structured questionnaire designed to elicit awareness of existence of epilepsy, attitude toward epilepsy, knowledge of cause, manifestation, first aid measures and treatment option of epilepsy. It had been used in many studies across various countries.9,10,11

Statistical analysis: Frequencies with percentages were calculated for categorical variables and mean, standard deviation and median were calculated for continuous variables. Comparisons were done by using the ChiSquare test, and ttest. SPSS (Statistical Package for the Social Science) version 16.0 for Windows (Chicago, Illinois, USA) was used for analysis. Significance level was set at P<0.05.


RESULTS

Table 1: Socio-demographic profile

Socio- demographic variable

Frequency/Mean

Percentage/SD

Mean age at presentation (S.D.)

34.9

SD= ± 5.46

Age Group

 

 

  1. 20-30 Years

124

24.8

  1. 31-40 Years

323

64.6

  1. 41-50 Years

53

10.6

Marital status

 

 

  1. Married

498

99.6

  1. Unmarried

2

0.4

Education

 

 

a. Higher Primary Education

14

2.8

b. Secondary Education

366

73.2

c. PUC and Above

120

24.0

Religion

 

 

  1. Hindu

499

99.8

  1. Muslim

1

0.2

Location

 

 

a. Rural

499

99.8

b. Urban

1

0.2

SES

 

 

  1. Lower Middle Class

4

0.8

  1. Middle Class

475

95.0

  1. Upper Middle Class

21

4.2

Experience

 

 

  1. Less than 2 Years

98

19.6

  1. 3-6 Years

131

26.2

  1. 7-10 Years

271

54.2


Total sample consist 500 ASHAs working in various taluks of Tumkur district. All of them were females with mean age of 34.9 years (SD= ± 5.46). Majority of them were married (99.6 %), from Hindu religion (99.8 %), studied above secondary education (8th class onwards) (97.2 %) and belong to middle socioeconomic class (95 %). 80.4 % of them had working experience of more than 3 years as health professionals. None of them had previous exposure to epilepsy programs or workshops.

Table 2: Familiarity with epilepsy

Questions

Response

Percentage/SD

  1. Have you ever heard about epilepsy?

 

 

  1. Yes

486

97.2

  1. No

14

2.8

  1. Have you ever read about epilepsy

 

 

  1. Yes

370

74.0

  1. No

130

26.0

  1. Do you know anyone who had or has epilepsy?

 

 

  1. Yes

424

84.8

  1. No

76

15.2

  1. Have you ever seen a seizure?

 

 

  1. Yes

379

75.8

  1. No

121

24.2

About 97.2 % of participants had heard about epilepsy, 74.0 % had read about epilepsy and 75.8 % had witnessed a seizure while 84.8% had known someone with epilepsy.

 

Table 3: Understanding and attitudes toward epilepsy

Questions

Response

Percentage/SD

  1. Would you object your child to play with people with epilepsy?

 

 

  1. Yes

307

61.4

  1. No

193

38.6

  1. Would you object to your child marrying with people who sometimes have seizures?

 

 

  1. Yes

375

75

  1. No

125

25

  1. Do you think people with epilepsy should be employed in jobs like other people?

 

 

  1. Yes

400

80

  1. No

100

20

  1. Do you think epilepsy is a form of insanity?

 

 

  1. Yes

395

79.0

  1. No

105

21.0

  1. Do you think epilepsy is contagious?

 

 

  1. Yes

435

87.0

  1. No

65

13

  1. Can Epilepsy be cured?

 

 

  1. Yes

462

92.4

  1. No

30

6.0

  1. I Don't Know

8

1.6

61.4 % would object to association with PWE, 75 % would not allow marriage with PWE, 80 % would offer equal employment to PWE. On the other hand, 87.0 % and 92.4 % of ASHAs think epilepsy is contagious and curable, respectively; while 79.0 % students believe epilepsy is a form of insanity.

 

Table 4: Knowledge and practices with respect to epilepsy

Questions

Response

Percentage/SD

  1. Do you know the cause of epilepsy? (More than one answers possible)

 

 

  1. Brain Disease

146

29.2

  1. Birth Defect

45

9.0

  1. Hereditary

16

3.2

  1. Evil spirit/ Witchcraft

193

38.6

  1. Punishment from God

76

15.2

  1. Blood disorder

12

2.4

  1. Combination of various factors

249

49.8

  1. What do you think is an epileptic attack?

(More than one answers possible)

 

 

  1. Tonic/ Clonic movement

143

28.6

  1. Foaming from the mouth

30

6.0

  1. Loss of consciousness

29

5.8

  1. Screaming

60

12.0

  1. Combination of manifestations

238

47.6

  1. What would you do if you noticed someone having a seizure?

(Multiple answers possible)

 

 

  1. Take them away from danger

60

12.0

  1. Put a spoon or cloth in the patient’s mouth

49

9.8

  1. Match stick smoke

32

6.4

  1. Hold or tie them down

17

3.4

  1. Put their head in a toilet hole

15

3.0

  1. Force some medicine down the patients throat

15

3.0

  1. Give iron materials to hold in hand

51

10.2

  1. Combination of measures

238

47.6

  1. If you think epilepsy is contagious, what is the mode of its transmission?

 

 

  1. Waste gas

21

4.2

  1. Sexual intercourse

51

10.2

  1. Saliva

69

13.8

  1. Physical contact

35

7.0

  1. Blood

213

42.6

  1. Combinations

111

22.2

  1. What source of treatment would you recommend?

 

 

  1. Traditional healer

146

29.2

  1. Medical doctor

450

90.0

  1. Combination of various measures

8

1.6

49.8 % participants mentioned more than one cause for epilepsy. About 29.2 % thought that epilepsy is a brain disease. Evil spirit/ witchcraft (38.6 %), punishment for wrong doing (15.2 %), birth defect (9.0 %), heredity (3.2 %) and blood disorder (2.4 %) were the other cited causes. For those who considered epilepsy to be contagious, the main methods of transmission identified were: Blood (42.6 %), combination of factors (22.2 %), saliva (13.8 %) and sexual intercourse (10.2 %). Concerning the manifestation of an epileptic attack, most respondents mention combination of manifestations (47.6 %), tonic/ clonic movement (28.6 %), screaming (12 %), foams from mouth (6 %) and loss of consciousness (5.8 %). As first aid, 12.0 % would take them to safe place, 10.2 % give iron materials to hold in hand, 3.0 % force some medicine down the patients throat, put a spoon or cloth in the patients mouth 9.8 %, 3.4 % hold or tie them down. Up to 90.0 % would prefer medical doctor for management of epilepsy and 29.2 % favored treatment from traditional healers.

 

Table 5: Analysis of association of KAP with work experience

Questions

Work experience

P- value

< 2 Years

3-6 Years

>7 Years

Yes

No

Yes

No

Yes

No

 

  1. Have you heard about epilepsy

92

6

129

2

265

6

0.078

  1. Have you read about epilepsy

69

29

94

37

207

64

0.406

  1. Do you know anyone who had or has epilepsy

79

19

109

22

236

35

0.261

  1. Have you ever seen a seizure

72

26

106

25

201

70

0.279

  1. Would you object your child to play with people with epilepsy?

40

58

44

87

109

162

0.388

  1. Would you object to your child marrying with people who sometimes have seizures

46

52

52

79

130

141

0.283

  1. Do you think people with epilepsy should be employed in jobs like other people?

47

51

68

63

134

137

0.827

  1. Do you think epilepsy is a form of insanity?

22

76

23

108

60

211

0.529

  1. Do you think epilepsy is contagious?

79

19

109

22

247

24

0.241

  1. Can epilepsy be cured?

92

20

129

5

241

5

0.070

No association has been found between ASHAs work experience and their knowledge, attitude and practice towards patients with epilepsy.

 


DISCUSSION

In our study, data has been collected from all the ASHAs working in all 10 taluks of a district. The response rate for our survey was exceptionally high, and provides a representative sample of grass root health care providers and gives some valuable insights into epilepsy care in this region. Though there are lots of studies available among doctors and nursing staff, there are very few studies done across the world among the grass root community health workers to assess KAP about epilepsy and so making it difficult to compare data with the present study.

Familiarity with epilepsy: In our study, 97.2 % and 84.8 % ASHAs have heard and know anyone who had or has epilepsy respectively. Around 3/4th of them have read about and witnessed seizure. Compared to the study conducted on health care workers in urban and rural districts of Zambia12 where more than 98% of respondents knew someone with epilepsy and had witnessed a seizure. Comparatively our ASHAs are less familiar with the epilepsy. Probably this may be due to lack of epilepsy related awareness programs and lack of practical exposure to the different types of epilepsy.

Understanding and attitudes toward epilepsy: Around 61.4% and 75% ASHAs object their child to play with and marrying with PWE respectively. And maximum ASHAs considered epilepsy as a form of insanity and contagious. Similar kind of social discrimination with person having epilepsy was evident in two studies which surveyed non-epileptic population found that 13%13 and 43%14 will not like to play with child with epilepsy. In contrast to our study findings, study by Chomba et al.12 shown more than 95% of health workers reported a willingness to allow their own child to play with a child with epilepsy, 75% would allow their son or daughter to marry someone with epilepsy and most health care workers recognized that epilepsy is not a contagious condition. Significant negative attitudes toward PWE are still evident among health care workers in our region

Knowledge and practices with respect to epilepsy: In present study only 29.2% ASHAs considered epilepsy as brain disease and half of them considered its due to evil spirit and punishment from God. In a similar study done in Zambia12 fewer than 40% characterized it as a brain disorder. ASHAs acute management recommendations were suboptimal, opining giving match stick smoke (6.4 %), put their head in a toilet hole (3%), force some medicine down the patient’s throat (3%) and giving iron materials to hold in hand (10.2%). Similar recommendations have been given by respondents in other studies: something hard to be placed in the person’s mouth (58.8%), person should be held down (38.6%),12 acute attack can be terminated with smell of shoe or onion 40.8%.15 In present study, 90% recommend medical doctor for treatment which is comparable to study done by Chomba et al.12 who recognize epilepsy as a condition requiring chronic medical treatment.

 

LIMITATIONS

Though our study results show interesting findings it must be seen within its limitations. Data is collected from ASHAs working in only one district, so findings cannot be generalized. And also there may have been a bias toward “socially acceptable” answers from health care workers.

 

CONCLUSION AND IMPLICATION OF THE STUDY

Significant lack of knowledge, negative attitudes and practices toward PWE are widely prevalent among ASHAs. It is evident from their responses that stigma, social discrimination is wide spread and there is lack of knowledge about etiology and first aid measures to be taken during seizure episode. Educational programs containing both didactic and bedside (i.e., practical) training in epilepsy should be given to ASHAs so that they are equipped to identify, assess, manage and refer the patients to treatment network to reduce the treatment gap and to dispel myths and misconceptions about epilepsy.

 

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