The document summarizes research on the treatment seeking behavior of leprosy patients in Visakhapatnam, India. It finds that socio-demographic factors like age, sex, occupation, and type of diagnosis influence the delay in seeking treatment. Males and daily laborers experienced longer delays. Stigma around leprosy was also found to negatively impact patients' quality of life, education, employment, and marital prospects. Scales to measure perceived, internalized, and enacted stigma showed high rates of stigma among the patients studied. Overcoming misconceptions around leprosy's curability and eliminating discrimination were identified as key to reducing stigma.

1. Treatment Seeking Behaviour of Leprosy
Patients attending Out-patient,
Department of Dermatology,
K.G.H. Visakhapatnam
Ashok Kanuri ,Dr.G.Krishna Babu M.D.(SPM)
Andhra Medical College & King George Hospital
Visakhapatnam

2. INTRODUCTION
Social
stigma
Deformity
& Fear
Disfiguring
Leprosy
Severe
Humiliation
Manifestation
Delay in
seeking
treatment

4. Quote by a patient
 I and my family are suffering with this condition as
a result of my sins I did in my early life
 M.Guruvulu,58 M
The name has been changed

5. Research Question 1
 What are the socio-demographic(*) factors
leading to delay in seeking treatment of
leprosy patients in terms of age, sex,
occupation ,marital status and place of living?
* People are unwilling to divulge their social status, religion and income

6. Research question 2
 What are the factors affecting treatment
seeking behaviour in terms of diagnosis,place
of seeking treatment and completion of
treatment

7. Materials & Methods
 Study site: Out-patient,Department of
Dermatology.
 Study period & size: 01-05-2011 to 31-05-2011,65
 Study tools:
Quantitative:- pre tested questionnaire
Qualitative:- observation, in depth-interviews
 Variables: Treatment seeking behaviour, diagnosis
of leprosy, follow up
 Analysis: Is done using percentages,no tests of
significance are applied

8. Results
 Distribution of study population according to
sex(n=65)
23
Males
77 Females

9.  Distribution of study population according to
residence
23
Rural
Urban
77

10.  Disrtibution of study population according to
marital status
70
62
60
50 45
40
Yes
30
20 No
20
10
3
0
Refused Marriage separated/Divorced

11.  Distribution of study population according to
occupation
45 40
40
35
30
25
20 15 15
15
10 6 8 8 5
5 3 Series 1
0

12.  Distribution of study population according to
diagnosis
56
54
54
52
50
48 Series 1
46
46
44
42
Pauci-Bacillary Multi-Bacillary

13.  Distribution of study population according to place
of seeking treatment
31
Government
69 Private

14.  Distribution of study population according to delay
in seeking treatment
12-24 months 8
2-12 months 54
Series 1
0-2 months 30
Zero 8
0 20 40 60

15.  Distribution of study population according to age
vs average delay in seeking treatment
9
8
8
7
6 6
6
5
4
4 Series 1
3
2
1
0
25-34 35-44 45-54 55-64

16.  Distribution of study population according to sex vs
average delay in seeking treatment
7
6
6
5
4
4
3 Series 1
2
1
0
Females Males

17.  Distribution of study population according to
occupation vs average delay in seeking treatment
9 8 8
8
7 6
6
5 4 4 4
4
3 2 2
2 Series 1
1
0

18.  Distribution of study population according to
diagnosis vs average delay in seeking treatment
7
6
6
5
4
4
3 Series 1
2
1
0
Pauci-Bacillary Multi-bacillary

19. Conclusion
 Factors affecting delay in seeking treatment
 include
 age(51-65),sex(males) ,occupation(daily
 laborers and vegetable sellers)and nature
ofdiagnosis(paucibacillary)
 Though stigma has not been shown in the
 analysis ,stigma still remains to haunt their
 day to day life in terms of Quality Of Life and
 disabilities are not uncommon.

20. ASSESSMENT OF STIGMA ASSOCIATED
WITH LEPROSY IN PATIENTS USING
EMIC AND ISMI SCALES
EMIC-Explanatory Model Interview Catalogue(8)
ISMI- Intenalized Stigma of Mental Illness(9)

21. Over 11-12 million (1)sufferers worldwide
More than 1000 leper colonies in the country
Disability adjusted life years (DALY)(2) lost globally due
to leprosy is estimated to be about one million
Map showing countries endemic for Leprosy (WHO, 2011)

22. New RESEARCH QUESTION
 What are the beliefs and attitudes
associated with stigma leading to delay
in seeking treatment among leprosy
patients and its impact on their quality
of life ?

23. MATERIALS AND METHODS
 Study site: Out-patient,Department of
Dermatology.
 Study period & size: 01-05-2011 to 31-05-2011,65
 Study tools:
Quantitative:- questionnaire, stigma scales
Qualitative:- observation, in depth-interviews
 Variables: Treatment seeking behaviour, diagnosis
of leprosy, follow up
 Analysis: Is done using percentages,tests of
significance are applied where ever necessary

24. Conceptual Approach
Qualitative in-depth narrative accounts are required to
develop queries, scales and instruments at the outset, so
that they may ensure the validity of large quantitative
assessments of the magnitude of stigma, and the
distribution of particular features, the overall impact and
determinants of stigma” (Weiss, 2004)
 Perceived stigma-EMIC affected scale
 Internalized stigma-ISMI scale
 Impact of stigma
EMIC-Explanatory Model Interview Catalogue(8)
ISMI- Intenalized Stigma of Mental Illness(9)

25. Measurement Model
Affected
Condition Community Impact
person
Self efficacy
Perceived
Perceived
stigma
Participation
Leprosy Experienced
Enacted Self esteem
stigma Internalized
Well being
Rensen et al., 2010

26. RESULTS
Distribution of study population using EMIC- stigma scale
(community & affected)
Disagree Agree
Prompt treatment given by doctors 0 100
Affected my educational plans or oppurtunities 30.76 69.22
Others would think less of family 23.09 76.91
People feel sorry for a person with this… 7.69 92.3
Relationship with friends affected negatively 76.91 23.09
Problems in ongoing marriage/spouse 76.91 23.09
Looked down upon by others 7.69 92.3
0 20 40 60 80 100 120

27. RESULTS
Distribution of study population using ISMI
stigma scale(individual)
Disagree Agree
I can have a good fullfilling life despite this… 30.76 69.22
I avoid getting close to avoid rejection 23.07 76.91
Nobody is interested in getting close 23.07 76.91
People can tell that I have this condition 30.76 69.22
I feel inferior to others 38.45 61.15
Iam embrassed/ashamed 38.45 61.15
0 20 40 60 80 100 120

28. Impact of stigma
Assessment of marital life among study population
Yes No
Refused to get married at the time
of diagnosis
30.76% 69.23 %
Separated/Divorced after diagnosis 95.38%

29. RESULTS
Impact of stigma
(on education and employement among study population)
Yes No
Not admitted to school/educational
institution
0 100%
Refused employement 46.15% 53.84%
Forced to leave job 38.46% 61.53%
0.00% 20.00% 40.00% 60.00% 80.00% 100.00% 120.00%

30. CONCLUSION
 “The biggest disease today is not leprosy or
tuberculosis but rather the feeling of being
unwanted, uncared for and deserted by
everybody”
Mother Teresa

31. For many people stigma is synonymous with leprosy.
This is due to
 Leprosy often causing severe disfigurement &
deformity
 Lack of knowledge about the disease

32. The key message that can overcome stigma are
 There is no need to discriminate against people
affected by leprosy
 Leprosy is curable
 Drug treatment is available free of charge

33.  EMIC and ISMI scales are useful tools to assess stigma
associated with leprosy.
 However very few studies have been conducted in India
using these scales
 NLEP since its inception has been successfull in bringing
down stigma against leprosy by its sustained IEC
programs-Previous literature on leprosy suggest that
stigma was very high in the 60’s,70’s and 80’s
 If misconceptions about leprosy are not changed it will
be difficult to eliminate leprosy as a public health
problem

34. Future Prospective
 Such scales can be used effectively in assessing
stigma against HIV/AIDS and also to assess impact
of lifestyle diseases such as diabetis
mellitus,hypertension,stress,cancer etc,
 Multi-centric studies can be organised in
developing countries to assess such impacts on
population affected by development.

35. References
1. WHO global statistics [WHO-2010].
2. Elimination of leprosy as a public health problem
Noordeen, SK
Indian Journal of Leprosy [INDIAN J. LEPR.]. Vol. 66, no. 1, pp. 1-10. 1994.
3. Stigter D, de Gaus L, Heynders M. Leprosy: between acceptance and segregation.
Community behavior towards persons affected by leprosy in eastern Nepal. Leprosy
Review, 2000; 71: 492–498.
4. Reference list leprosy related stigma-1998-2009.Nations MK[et. al.] stigma, deforming
metaphors and patients moral experience of multibacillary leprosy in sobral,ceara
state, Brazil ,Cad Saude Publica 2009,25[6]:1215-1224
5. Strategic framework for reduction of stigma & discrimination by Danlep
6. Countries endemic for Leprosy
(WHO, 2011)
7. Measuring stigma by Wim H. van Brakel, Carlijn Voorend, Carin Rensen
8. EMIC by(Mitchell Weiss Swiss Tropical Institute and University of Basel
9. ISMI by Boyd formerly Ritsher, Jennifer E, University of California San Francisco

36. Acknowledgements
 I would like to thank the Department of Community
Medicine and Department of Dermatology of
Andhra Medical College for allowing me to conduct
my research.

37. Thank you!
ashokkanuri@gmail.com