Association of Stigma in Leprosy

Association of Stigma and Psychiatry
co-morbidity in Leprosy patients
Samrat Kar
1
, G.C.Kar
2
, T.Pati
3
,
N.M.Rath
4
, S.P.Swain
5
ABSTRACT
Background: Stigma experienced by Leprosy patients can lead to Psychiatry
co-morbidity in them.
Objective: associ ati on of Sti gma and Psychi atry morbi di ty i n Leprosy
patients..
Setting: The study was conducted at Dept of SCB Medical College Hospital,
Cuttack and Leprosy centre, Gandhipalli, Cuttack.
Methods: A survey of patients admitted for delivery was conducted for one
month, using a questionnaire designed for this purpose.
Results: In the present study, 65 patients reported stigma related behavior at
different pl aces. Further it was observed that (73.84%) of patients with
psychiatric morbidity reported about stigma in comparison to (26.15%)
without. Highest no of patients reported regarding stigma at work place (57%)
INTRODUCTION
Leprosy is one of the oldest diseases known to mankind. The word "leper"
was derived from a Greek word meaning "Scaly.
Besides the emotional burden, stigma appears to be one of the foremost
stumbling blocks. Stigma associated with leprosy is perpetuated due to different
factors like prevalent myths of causation by hereditary factors, divine curse or
ill deeds of past life and disfiguring physical deformities (Kaur et al, 2002).
El i ssen et al (1991) opi ned t hat l eprosy pat i ent s t end t o di scri mi nat e
themselves. Kumar et al (1983) observed that leprosy patients experienced
negative reactions from their families, spouses and society members too.
Stigma coupled with physical deformity, reduced productivity and social
isolation grossly increases the level of stress. (Vlassoff et al, 1996; Vasundhra
et al, 1983; Kumar et al, 1983; Chaturvedi et al, 1990). All these factors have
obvious mental health consequences.
47
Zodpey et al (2000) in a study involving 486 patients observed that
leprosy patients were isolated and refrained from various activities in the family
and more so in females. Further women were found to suffer more isolation
and rejection from the society. But Cakiner et al (1993) opined that women
with leprosy have problems in common with other women.
Kumar et al (1983) interviewed 225 adult leprosy patients to study
various aspects of their lives. It was observed that 17.34%, 14.33% and
45.78% of pati ents experi enced negati ve reacti ons from thei r fami l i es,
spouses and society members, respectively. Out of 79 unmarried patients,
53 (67.1%) attributed l eprosy as the onl y reason for not getting a partner
for marriage. Out of 146 married patients, 34 (23.3%) were not l iving with
t hei r spouses; t hi s al so i ncl uded 9 (6. 2%) pat i ent s, desert ed by t hei r
partners. Leprosy uprooted 44 (13.55%) patients from their residences, of
whom 27 settled in leprosy village/settlement. Mhasawade et al (1983) also
highlighted the social stigma and considered the psychiatric hazards of the
disease to be as bad as its physical manifestations.
Kushwah et al (1991) in a l ongitudinal study on stigma found that
26.45% cases had to face one or more than one type of social stigma. The
stigma was more preval ent in mal es, il l iterates and l ow socio-economic
group.
Divorcing a leprosy-afflicted spouse is one of the manifestations of
social stigma attached to l eprosy and depends on the decision resul ting
from perceived physical and social threat. Raju et al (1995) conducted an
atti tude study on thi s aspect i nvol vi ng 1199 communi ty members from
Orissa and Andhra Pradesh. A l arge number of respondents from Orissa
suggested divorce.
Vl assoff et al (1996) in a study on 2495 patients found that both men
and women were negatively affected in terms of their family and marital
lives but women appeared more vulnerable because they were deprived of
personal contact with others in the domestic environment where they were
accustomed to receiving their greatest emotional rewards. Women reported
that indifference to them by other family members, or seeming negation of
their presence, caused them the greatest suffering.
Self-stigmatization is another concern, which reflects an improper and
psycho-pathogenic response by l eprosy patients. El issen et al (1991) was
of the opinion that leprosy patients tend to discriminate themselves, while
more tol erance is found in their heal thy contacts. Pal et al (1985) al so
observed that 75% of patients did not encounter any adverse reaction from
48
the fami l y member s , or nei ghbour s even t hough mos t of t hem knew
about t he di s eas e. Ar ol e et al ( 2002) obs er ved, i n a popul at i on
r e c e i v i n g v e r t i c a l c o n t r o l p r o g r a mme , a h i g h l e v e l o f s e l f -
s t i gmat i z at i on among l epr os y pat i ent s bes i des s oci al s t i gma i n t hei r
communi t i es l eadi ng t o r educed i nt er act i on bet ween t he l epr os y
pat i ent s and t hei r communi t i es .
St i gma as s oci at ed wi t h l epr os y i s mai nl y due t o t he pr eval ent
myt hs , mi s concept i ons and a dr eaded per cept i on about t he phys i cal
def or mi t i es caus ed ( Kaur et al , 2002) . I t i s a s oci al mal ady t hat has
t o be s ol ved. Even now a days peopl e af f ect ed by l epr os y have t o
l eave t hei r vi l l age or ar e s oci al l y i s ol at ed ( Sent ur k et al , 2004) .
Fr i s t et al ( 1980) i nt er vi ewed 104 empl oyer s t o s t udy t hei r
at t i t udes t owar d hi r i ng t he l epr os y pat i ent and per s ons wi t h f i ve
ot her handi c appi ng c ondi t i ons . The s i ngl e mos t c i t ed r eas on by
empl oyer s f or havi ng a negat i ve at t i t ude t owar d hi r i ng handi capped
c andi dat e s as a g r oup was f unc t i onal - - t he c andi dat e woul d be
" unabl e t o do t he j ob. " The mos t ci t ed j us t i f i cat i on f or not hi r i ng
t he l epr osy pat i ent was t hat " cust omer s and ot her empl oyees woul dn' t
l i ke i t . "
Zodpey et al ( 2000) car r i ed out a s t udy at t he Lepr os y t o
i nvest i gat e gender di f f er ent i al s i n t he soci al and f ami l y l i f e of l epr osy
pat i ent s i nvol vi ng 486 pat i ent s. I t was obser ved t hat l epr osy pat i ent s
wer e i s ol at ed and r ef r ai ned f r om var i ous act i vi t i es i n t he f ami l y.
However, women s uf f ered f r om more i s ol at i on and s oci al r ej ect i on.
Ri char dus et al ( 1999) obs er ved t hat New cas e det ect i on r at e
( NCDR) was l ower f or f emal es t han mal es i n Bangl ades h. Thi s may
be due t o t he s oci ocul t ur al char act er i s t i cs of t he s oci et y, wi t h gender
di f f er ences i n expos ur e, heal t h s eeki ng behavi or and oppor t uni t i es
f or cas e. I n a met a- anal ys i s s t udy of women and Lepr os y i n Kenya,
Le Gr and ( 1997) al s o obs er ved gender i nequal i t i es i n heal t h have a
s i gni f i cant i mpact on women' s heal t h. I n l epr os y gender i nequal i t i es
coul d be even mor e s er i ous , as i t i s a hi ghl y s t i gmat i z ed di s eas e
OBJECTI VE
I n t he above back gr ound; t he pr es ent s t udy was t aken up at
Dept of Ps ychi at r y, SCB MCH and Lepr os y hos pi t al , Gandhi pal l i ,
Cut t ac k wi t h t he obj e c t t o f i nd out as s oc i at i on of St i g ma and
Ps ychi at r y mor bi di t y i n Lepr os y pat i ent s
49
MATERIALS AND METHODS
Place of study
The present study was undertaken at Leprosy centre Outpatients,
Gandhipalli,Cuttack, in liaison with Mental Health Institute, Sriram Chandra
Bhanja Medical College Hospital, Cuttack in the one-month period of 1st June,
2005 to 3oth June, 2005. Gandhipalli is a state leprosy center run by the
Government of Orissa. It is manned by three specialists and caters outpatient,
inpatient and palliative care to the leprosy patients from the adjoining districts.
Mental Health Institute is the premier psychiatric institute of the state of
Orissa. It is the ultimate referral center for psychiatry in Orissa.
The Study Sample
The study sample was collected from the outpatient attendance of fifteen
to twenty during the one-month period. But all the patients could not be
considered as the initial interview involved a period of about 45 minutes.
Criteria for selection
Inclusion criteria
1. Age is between 15-60 Years
2. Should be physically fit to answer the questions
3. Availability of reliable informants
Exclusion criteria
1. Patients more than 60 years age were excluded to rule out the possibility
of organic involvement.
2. Patients previously diagnosed as a case of leprosy and under cover of
any psychiatric drugs
3. Patients taking any medication, which can produce cognitive and other
psychological defect
4. Pati ents wi th other co-morbi d der matol ogi cal and general medi cal
condition, those needing urgent attention for physical problems.
5. Patients without reliable informants
Methodology
Out of 116 cases so considered 16 were excluded according to fixed
criteria.
Diagnosis of l eprosy was done by cl inical examination, associated
cardinal sign and supported by histopathology and bacteriological examination
50
DISCUSSION:
It will be worthwhile to discuss certain inherent aspect of the study sample
as well as the environment of the leprosy center before proceeding on analysis
of the findings presented in the previous chapter.
State Leprosy center at Gandhipalli, Cuttack was source for collecting
the sample. It is a dedicated hospital with both inpatient and outpatient facil-
ity and is manned by three specialist doctors. In the present study only outpa-
tient was taken into consideration with a view to avoid the possible bias of
over representation of patients with deformity. However the outpatients' at-
tendance in a labeled leprosy hospital may or may not be strictly representa-
tive of leprosy patients in the general population. The factors that influence in
such hospital are awareness, as well as chronicity of illness, appearance of
deformity, financial problem, and proximity of the institute. Some of these
may constitute an unavoidable limitation.
Further it was not possible to take up all the patients attending the OPD
of leprosy hospital for initial evaluation. This was so because it required about
45 minutes for initial case taking. Hence it was only feasible to consider a
case after considering a preceding one. Resistance for referral to Mental Health
Institute, though with support was another factor that influenced inclusion of
cases. However 116 cases were initially considered for study and 13.79%(16)
cases had to be excluded as depicted in table no 1.The common reason for
exclusion were lack of reliable informant and refusal of relative or patient for
psychiatric referral.
The fact that - patients of leprosy having given initial consent for inclu-
sion in the study declined for psychiatric referral clearly indicates the preva-
lent stigma in respect of mental disorder.
The interface of leprosy and psychiatry, thus involves the effect of perva-
sive taboos against leprosy as well as psychiatric disorder.
Stigma is a pervasive social phenomenon. Available literature highlights
adverse consequence of stigma in leprosy (Kushwah et al, 1991; Vlassoff et al,
1996; Kumar et al,1983 ). The domain of stigma involves not only the society,
but also one's own family, public institution, school as well as work place.
In the present study, 65 patients reported stigma related behavior at dif-
ferent places. Further it was observed as in Table no.2 that (73.84%) of pa-
tients with psychiatric morbidity reported about stigma in comparison to
(26.15%) without.
53
It was further attended to examine areas of stigma faced by the leprosy
patients i.e., at school, work place, in family and in society. The resultant
finding as in Table no.3 imply that highest no of patients reported regarding
stigma at work place (57%). It was followed by stigma faced in family (19%),
at school (16%) and in society (15%). Different stigmas were also compared
with respect to co-morbid mental illness. The proportion of Psychiatric co-
morbidity was highest for these with stigma at work places (75.44%) followed
by stigma at school(68.75%), stigma in family(68.43%) and society(60%). This
is similar to observations made by Kaur et al (2002);Senturk et al( 2004) and
Frist et al (1980).
CONCLUSION & SUGGESTION
The following conclusion may be derived on the basis of the observations of
the present study as summarized in the previous section.
1. Majority of the leprosy patients have simultaneous psychiatric disorders.
2. Stigma, which is an important negative social factor related both to mental
disorder and leprosy is more experience by the patients with comorbidity.
3. Facilities for psychiatric consultation liaison ought to be developed in cen-
ters dealing with leprosy.
4. This can be facilitated by having psychiatric units in such centers or devel-
oping appropriate and effective referral services.
5. Medical and paramedical personnel dealing with leprosy should be pro-
vided appropriate orientation is psychiatry. This would be helpful in pri-
mary prevention and early detection and removal of Stigma in Leprosy
Patients
LIMITATION
1. The study had to be conducted within limited time frame.
2. It was not a longitudinal follow-up study.
3. Cases excluded could be with or without psychiatric comorbidity
4. Those leprosy patients who did not/never attend OPD were obviously out of
study.
5. On direct enquiry, there could be chances of wrong information.
54
REFERENCE
l Arole, S., Premkumar, R., Arole, R., Maury, M. and Saunderson, P. (2002)
Social stigma: a comparative qualitative study of integrated and vertical
care approaches to leprosy. Leprosy Review, 73, (2 Suppl), 186-96.
l Chaturvedi, R.M. and Kartikeyan, S. (1990) Employment status of lep-
rosy patients with deformities in a suburban slum. Indian Journal of
Leprosy, 62, (1 suppl), 109-112.
l Elissen, M.C. (1991) Beliefs of leprosy patients about their illness. A study
in the province of South Sulawesi, Indonesia. Trop Geogr Med, 43, (4
suppl), 379-382.
l Frist, T.F. (1980) Employer acceptance of the Hansen's disease patient
and other handicapped persons. International Journal of Leprosy Other
Mycobacteria Disease, 48, (3 suppl), 303-308.
l Kaur, H. and Van Brakel, W. (2002) Dehabilitation of leprosy-affected
people--a study on leprosy-affected beggars. Leprosy Review, 73, (4
Suppl), 346-355.
l Kopparty, S.N. (1995) Problems, acceptance and social inequality: a
study of the deformed leprosy patients and their families. Leprosy Re-
view, 66, (3 Suppl), 239-249.
l Kumar, A. and Anbalagan, M.( 1983) Socio-economic experiences of
leprosy patients. Leprosy India, 55, (2 suppl), 314-321.
l Kushwah, S.S., Govila, A.K, Upadhyay, S. and Kushwah, J.( 1981) A
study of social stigma among leprosy patients attending leprosy clinic in
Gwalior. Leprosy India, 53, (2 suppl), 221-5.
l Le Grand, A. (1997) Women and leprosy: a review. Leprosy Review, 68,
(3 suppl), 203-211.
l Mhasawade, B.C. (1983) Leprosy-a case for mental health care. Lep-
rosy India, 55, (2 suppl), 310-313.
l Pal, S. and Girdhar, B.K. (1985) A study of knowledge of disease among
leprosy patients and attitude of community towards them. Indian Jour-
nal of Leprosy, 57, (3 Suppl), 620-623.
l Raju, M.S. and Reddy, J.V. (1995) Community attitude to divorce in
leprosy. Indian Journal of Leprosy, 67, (4 suppl), 389-403.
55
l Raju, M.S. and Reddy, J.V. (1995) Community attitude to divorce in
leprosy. Indian Journal of Leprosy, 67, (4 suppl), 389-403.
l Richardus, J.H., Meima, A., Croft, R.P. and Habbema, J.D. (1999) Case
detection, gender and disability in leprosy in Bangladesh: a trend analy-
sis. Leprosy Review, 70, (2 suppl), 160-173.
l Senturk, V. and Sagduyu, A. (2004) Psychiatric disorders and disability
among leprosy patients; a review. Turk Psikiyatri Derg. Fall, 15, (3 suppl),
236-243.
l Vasundhra, M.K., Siddalingappa, A.S.and Srinivasan, B.S. (1983) A
study of medico-social problems of the inmates of a leprosy colony in
Mysore. Leprosy India, 55, (3 suppl), 553-559.
l Vlassoff, C., Khot, S. and Rao, S. (1996) Double jeopardy: women and
leprosy in India.World Health Statistic, 49, (2 suppl), 120-126.
l Zodpey, S.P., Tiwari, R.R. and Salodkar, A.D. (2000)Gender differen-
tials in the social and family life of leprosy patients, Leprosy Review, 71,
(4 suppl),505-510.
Dr. Samrat Kar
M.D. Trainee, Mamata Medical College & Hospital,
Khammam, Andhra Pradesh
Dr. G.C.Kar
Ex-Prof. MHI, SCB MC, Cuttack.
Dr. T. Pati
Consultant Psychiatrist, Cuttack
Dr. N.M.Rath
Assoc. Professor, Dept of Psy., VSS MC, Burla
Dr.S.P.Swain
Asst Prof., MHI, SCB MC, Cuttack.
56