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 Table of Contents  
ORIGINAL ARTICLE
Year : 2018  |  Volume : 7  |  Issue : 3  |  Page : 247-250

Perception toward the disease of the people affected by leprosy


1 Department of Sociology, Bharathidasan University, Tiruchirappalli, Tamil Nadu, India
2 Department of Sociology and Population Studies, Bharathiar University, Coimbatore, Tamil Nadu, India
3 Knowledge and Management, The Leprosy Mission Trust India, New Delhi, India

Date of Web Publication6-Sep-2018

Correspondence Address:
Mr. Pitchaimani Govindharaj
Department of Sociology, Bharathidasan University, Tiruchirappalli - 620 024, Tamil Nadu
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijmy.ijmy_66_18

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  Abstract 


Background: This study aimed to explore the disease severity perceived by people affected with leprosy reporting at leprosy referral center, Purulia, West Bengal, India. Methods: A cross-sectional study was conducted among 358 persons affected by leprosy above the age of 18 and married who were reporting at tertiary leprosy referral hospital, Purulia, West Bengal, India. A semistructured questionnaire was prepared to collect the demographic profile, disease profile, and perceived severity of the disease. Results: Among the participants, 41% of them were female, 60% were aged between 18 and 45 years, 58% were literate, and 40% of the participants had physical disability. The participants had multiple feelings of fear, anxiety and sorrow when first diagnosed as leprosy affected. Majority (69%) of the participants had fear of the disease. A significant association was present among males and females feeling fear of leprosy and the female feared more than male. Conclusion: The present study emphasizes the need for continuous counseling and health education for persons affected with leprosy to avoid or minimize the psychological problems. Periodical screening and counseling will improve their psychosocial well-being and quality of life.

Keywords: Disability, disease severity, leprosy, purulia


How to cite this article:
Govindharaj P, Srinivasan S, Darlong J. Perception toward the disease of the people affected by leprosy. Int J Mycobacteriol 2018;7:247-50

How to cite this URL:
Govindharaj P, Srinivasan S, Darlong J. Perception toward the disease of the people affected by leprosy. Int J Mycobacteriol [serial online] 2018 [cited 2018 Sep 26];7:247-50. Available from: http://www.ijmyco.org/text.asp?2018/7/3/247/240691




  Introduction Top


Leprosy is a chronic infectious disease caused by Mycobacterium leprae and remains a major public health problem in India.[1] India accounts for the highest number of persons affected by leprosy with about 135,485 new cases detected in 2017[1] and accounts for over 63% of the global leprosy burden.[2] Still, it is a stigmatized disease mainly because of its potential to cause disability in a small proportion of those affected and is a cause for social stigma and discrimination.[3] Physical disabilities caused by the disease resulted in enormous psychological consequence and more possibility to get the worst quality of life.[4],[5],[6]

Perceived severity refers to the degree people deem a particular disease or condition is serious. Perceived severity includes how people perceive the deleterious consequences of a serious health event or outcome, such as a diagnosis of leprosy. Witte defines perceived severity as a person's beliefs about the significance or magnitude of a health threat.[7] The perceived severity of consequences may relate to an anticipated event that may occur in the future, or to an operant state such as a preexisting health problem. Hence, this study attempts to explore the disease severity perceived by leprosy-affected people reporting at leprosy referral center, Purulia, West Bengal, India.


  Methods Top


A cross-sectional descriptive study was conducted with 358 individuals affected with leprosy who attended the hospital outpatient department from April to June 2017.

Study settings

The present study took place in a territory referral hospital, Purulia, West Bengal, India. The purulia district is endemic for leprosy.[8]

Participant eligibility

All adult persons affected with leprosy who were 18 years and above and diagnosed with leprosy at least for 1 year at the time of interview. A person who was living in leprosy colony were excluded from the study.

Semistructured questionnaire

A semistructured questionnaire was prepared to collect the demographic and disease profile along with the severity of the disease.

Procedure

A first author was assigned to recruit participants, describe the study to them, obtain informed consent, and perform the interview with assistants of trained field investigators. All interviews were conducted in vernacular language “Bengali.” The interview was conducted in strict privacy after building rapport with the participants, and precaution was taken to avoid the emotional distress of participants. In case of any emotional distress, the interview was terminated.

Approval of this study obtained from the Doctoral Research Committee members, Department of Sociology, Bharathidasan University and Research Committee of the Leprosy Mission Trust India, New Delhi. Participation was voluntary, and information was collected anonymously after obtaining written consent from each participant by assuring confidentiality throughout the data collection period. Data were entered and analyzed using SPSS version 23.0 (IBM, NY, USA).


  Results Top


The participant's details of demographic profile, disability status, and disease duration are described in [Table 1]. Of the 358 participants, 41% of them were female, 60% were aged between 18 and 45 years, 58% were literate, and 55% of them were laborers or farmers. Nearly half of them were living in a medium family size, and majority of their monthly family income was below Rs.5000. More than half of them had physical impairment (Grade 1; 18% and Grade 2; 40%), and 60% of their disease duration was more than 3 years.
Table 1: Demographic profile, disability status, and disease duration of the participants (n=358)

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Disease severity

The participants had multiple feelings when first diagnosed with leprosy. Two hundred and eighty-one (78.5%) of them felt fear; in addition, 58% had anxiety, 46% had sorrow, and 22% had embarrassment and also guilt (8%) and denial (2%) [Table 2]. Of the 358 participants, 69% had fear of the disease. Among the diseases listed, 56% had fear of leprosy and 25% for cancer [Table 3]. Reasons for fear are described in [Table 4].
Table 2: Feelings when first diagnosed with leprosy

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Table 3: Fear against leprosy (n=358)

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Table 4: Distribution of the participants by reason for fear (n=358)

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[Figure 1] describes the disease severity perceived by the participants. Among the diseases such as AIDS, tuberculosis, cancer, diabetes mellitus, stroke, heart disease, and leprosy, cancer was perceived as the most severe followed by leprosy and AIDS. Less than one-fourth considered tuberculosis, malaria, heart disease, and stroke as severe.
Figure 1: Disease severity perceived by the participants

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A significant association was present among males and females afraid of leprosy, and the females were more afraid than male [Table 5].
Table 5: Association between gender and fear of leprosy (n=358)

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  Discussion Top


Today, leprosy is curable with multidrug therapy (MDT), and persons affected with leprosy are free from leprosy once they have regularly completed the course of MDT. However, unfortunately, the stigma attached to leprosy still persists due to visible deformities.[9],[10],[11]

Fear and worry about illness are closely linked to the concept of severity. According to tipping and Segall, the manner in which people perceive their disease and its treatment determines their health-seeking behavior.[12] Perceived severity of leprosy depends mainly on the health consequences of disease and deformity, and consequences of psychosocial problems may lead to stigma and discrimination. As a result of stigma and discrimination, people affected with leprosy often experience a loss of self-esteem and dignity and feel fear, shame, hopelessness, and guilt.[13] Studies have shown that these effects are greater in female than male patients.[14],[15] Mankar et al. found that the persons affected with leprosy are aware more about the infectious nature of the disease, symptoms, transmission, and curability than the community members. However, a negative attitude was seen toward the persons affected with leprosy in the society.[16]

In this study, the patients had multiple feelings of fear, anxiety, and sorrow when first diagnosed with leprosy. Further, few were embarrassed and blamed themselves for contracting the infection. The females had more feared than males. Among the diseases such as AIDS, cancer, tuberculosis, heart disease, diabetes mellitus, and leprosy, half of them perceived leprosy disease as the most dangerous disease. Because they felt that the leprosy disease leads to deformity and difficulty to achieve a cure. However, half of them had an opinion that cancer is the most dangerous disease and it mostly leads to death.

Stigma can be categorized from the perspective of the affected person into internalized, perceived and experienced stigma.[17],[18] Higher perceived disease severity may lead to internalized or perceived stigma among persons affected with leprosy. As a result of perceived stigma, people may adopt a first choice strategy of nondisclosure and concealment. This had been a deterrent in the early diagnosis, prompt treatment, and cure of leprosy in the earlier days.

Diagnosis at an early stage is absolutely essential for earlier treatment to prevent the leprosy-related disabilities and its benefit for termination or control of infection transmission. Stephen et al. observed that majority of the family members understood that leprosy was curable and the deformities can be prevented by early and regular treatment.[19]


  Conclusion Top


The present study emphasizes the need for continuous counseling and health education to avoid or minimize the psychological problems for people affected with leprosy. Periodical screening and counseling will improve their psychosocial well-being and the quality of life.

Acknowledgment

The authors express sincere thanks to Prof & Head Dr. M. Thavamani, Department of Sociology, Bharathidasan University, Tamil Nadu, Dr. Famkima Darlong, Superintendent, The Leprosy Mission Hospital, Purulia and The Research domain, The Leprosy Mission Trust India, New Delhi for their guidance and encouragement. The authors would like to thank Ms. Sneha Mahato, Mr. Subir Ketiar, and Mr. Deepraj Mardy for their sincere involvement in data collection. We thank all the persons who participated in this study. We extend our sincere thanks to the staff of the Physiotherapy department, Purulia Leprosy Mission Hospital, for their support.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
National Leprosy Eradication Programme (NLEP), India. Annual Report 2016-2017. New Delhi: Central Leprosy, Directorate General of Health Services, Government of India. Available from: http://www.nlep.nic.in/data.html. [Last accessed on 2018 Jan 19].  Back to cited text no. 1
    
2.
World Health Organization. Global leprosy update, 2016: Accelerating reduction of disease burden. Wkly Epidemiol Rec 2017;92:501-19.  Back to cited text no. 2
    
3.
Report of the International Leprosy Association Technical Forum. Prevention of disability and rehabilitation. Lepr Rev 2002;73:S35-43.  Back to cited text no. 3
    
4.
Leekassa R, Bizuneh E, Alem A. Prevalence of mental distress in the outpatient clinic of a specialized leprosy hospital. Addis Ababa, Ethiopia, 2002. Lepr Rev 2004;75:367-75.  Back to cited text no. 4
    
5.
Kisivuli AJ, Othieno CJ, Mburu JM, Kathuku DM, Obondo A, Nasokho PW. Psychiatric morbidity among leprosy patients in Teso and Busia districts of Western Kenya. East Afr Med J 2005;82:452-6.  Back to cited text no. 5
    
6.
Singh GP. Psychosocial aspects of Hansen's disease (leprosy). Indian Dermatol Online J 2012;3:166-70.  Back to cited text no. 6
[PUBMED]  [Full text]  
7.
Witte K. Putting the fear back into fear appeals: The extended parallel process model. Commun Monogr 1992;59:329-49.  Back to cited text no. 7
    
8.
National Leprosy Eradication Programme (NLEP), India. District Wise PR & NCDR as on March, 2015. New Delhi: Central Leprosy, Directorate General of Health Services, Government of India. Available from: http://www.nlep.nic.in/states.html. [Last accessed on 2017 Dec 20].  Back to cited text no. 8
    
9.
Heijnders ML. The dynamics of stigma in leprosy. Int J Lepr Other Mycobact Dis 2004;72:437-47.  Back to cited text no. 9
    
10.
Weiss MG, Ramakrishna J, Somma D. Health-related stigma: Rethinking concepts and interventions. Psychol Health Med 2006;11:277-87.  Back to cited text no. 10
    
11.
Sermrittirong S, Van Brakel WH. Stigma in leprosy: Concepts, causes and determinants. Lepr Rev 2014;85:36-47.  Back to cited text no. 11
    
12.
Singh S, Sinha A, Banerjee B, Jaswal N. Knowledge, beliefs and perception of leprosy. Disabilc CBR Inclusive Dev 2013;23:67-75.  Back to cited text no. 12
    
13.
Kaehler N, Adhikari B, Raut S, Marahatta SB, Chapman RS. Perceived stigma towards leprosy among community members living close to nonsomboon leprosy colony in Thailand. PLoS One 2015;10:e0129086.  Back to cited text no. 13
    
14.
Zodpey SP, Tiwari RR, Salodkar AD. Gender differentials in the social and family life of leprosy patients. Lepr Rev 2000;71:505-10.  Back to cited text no. 14
    
15.
van Brakel WH. Measuring leprosy stigma – A preliminary review of the leprosy literature. Int J Lepr Other Mycobact Dis 2003;71:190-7.  Back to cited text no. 15
    
16.
Mankar MJ, Joshi SM, Velankar DH, Mhatre RK, Nalgundwar AN. A comparative study of the quality of life, knowledge, attitude and belief about leprosy disease among leprosy patients and community members in Shantivan leprosy rehabilitation centre, Nere, Maharashtra, India. J Glob Infect Dis 2011;3:378-82.  Back to cited text no. 16
    
17.
Rensen C, Bandyopadhyay S, Gopal PK, Van Brakel WH. Measuring leprosy-related stigma – A pilot study to validate a toolkit of instruments. Disabil Rehabil 2011;33:711-9.  Back to cited text no. 17
    
18.
Van Brakel WH. Measuring health-related stigma – A literature review. Psychol Health Med 2006;11:307-34.  Back to cited text no. 18
    
19.
Stephen T, Selvaraj I, Parameswari PJ. Assessment of knowledge, attitude and practice about leprosy among patients and their families in a rural community in Tamil Nadu. Indian J Lepr 2014;86:7-14.  Back to cited text no. 19
    


    Figures

  [Figure 1]
 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5]



 

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