VL (Visceral
Leishmaniasis) death households are the most
important sources of information, FGD has been done with the household head of
that household. Inspite of this considered Controlled group(Cured Patients of VL).
Because
the number of VL death households
is not sufficient. Either this, this group also provide inportant information
about existing treatment system. To considered two group got valuable
information which created possibilities to comparative analysis among two
group. Conducted 4 FGD; 2 FGD with VL death households heads. One in Damkurahat
field office, Godagari, Rajshahi (No. participants were 10). Another conducted
in Trishal Field office, Mymensingh (No. of Participants were 6). Other 2 FGD
among Controlled group(Cured Patients of VL) as like
above (No. of participants were 5 & 6 respectively in 2 no. and 4 no. FGD ).
No. of participants were not
more than 10, so that effective discussions had been held. A semi-structured checklist
used to guide the discussion in all of 4 focus groups. The guide will consist
of open-ended questions designed to keep the discussion focused on VL and VL
related experiences. Each FGD was last 60 to 95 minutes. The conceptual and
literal understanding of questions had been examined prior to fieldwork and
adjustment had made to eliminate confusion and to account for the local
context. All the groups had been conducted in Bangla. Data had been collected by
using short field notes and all focus group discussion have been recorded.
A. Basic Information about respondent
Among the households
head there were equal number of female & male participants. And female were
more responsive than male during discussions period. Because, female were fully
attached with deceased for caring & nursing from beginning of the diseases
to death. They provide effective & versatile information. In Godagari most
of all participants were Indigenous people. But in Trishal all are Bengali
muslim. Ages of the participants were varying in 20 to 40; only two were up to
60. Except one female participant was student and rest were housewives. Male
were laborer and few farmers. Half households head were literate; they can only
sign their name & the female literate ratio was more than male.
Among the control group
only two were female participants and other 9 were male. Ages were versatile.
Education status was very poor. Most of the participants were wage laborer. One
was farmer. Between two female participants one was housewives another was
students (studied B.A. in pass course).
B.
Information on the deceased
Deceased were Indigenous people as well as Bengali muslim.
According to gender they were male female both. There is no relation between
deceased & age. In discussion, find that all age’s (child to late adult)
people were deceased. Occupation didn’t matter of fact for the ‘Kala-azar’
& deceased. All the deceased were not so much literate. Only one deceased
was complete primary education.
C.
Kala-azar awareness
knowledge about Kala-azar
Visceral Leishmaniasis (‘kala-azar’) is the
most severe form of leishmaniasis (zar). These parasites usually migrate
to the visceral organs such as liver, spleen and bone marrow. During 4 FGD
among Godagari Upzilla of Rajshahi District & Trishal upzilla of Mymensingh
district- researcher conclude that, participants were narrated some different
types of symptoms of kala-azar. After linked up the symptoms ‘Kala –Azar’ has mainly of three types:
- Kala-Azar
affected in Blood (along with other symptoms blood turn into black, blood
became more thick than normal, weight loose )
- Kala-Azar
affected in Affected in Kidney (didn’t weight loose, increase water in body ‘sharir fola,
pani jama’) &
- Kala-Azar
affected in liver [(skin & eye
color turn into yellow, ‘jondis’ (hepatitis b)]
‘Kala-azar’ is happening for their unhygienic habitat. They
are rearing their livestock near house. In some case, ‘goalghar’ (house
of livestock) and living house is attached. Especially this scenario is found
indigenous community of Godagari. They usually didn’t use mosquito net and
using net for livestock is also rear. They know that, ‘kala-azar’ is happening
for bite of an insect. They learned about the insect from doctors, nurse, field
workers of the different ‘kala-azar’ project in different time. But, confusion
about mosquito & fly. Not a clear concept among the participants.
Signs and
symptoms of
Leishmaniasis (Kala-Azar)
The symptoms of kala-azar vary from one
person to other. However, some of the common symptoms include high undulating
fever often Chills, rigors, weight loss, cough, burning feet, abdominal pain,
joint pain and diarrhea.
The
symptoms of leishmaniasis (Kala-Azar) are very slow appearance. According to
participants, when & how it (Bite of a fly or Insect) happened; we didn’t recognize.
·
The first symptom of Kala-Azar is fever. In the
beginning stage fever isn’t appear properly; it contain inside the body. Some
times fever (temperature) can be measured. The victims & household heads of
deceased family called this types of fever ‘vus-vuse jar’. The fever has
some consequences;
§
Its not constant but periodical. Generally the
fever has severe in afternoon to till midnight.
In the morning, the patients don’t realize the fever. The fever isn’t gone but
the density of fever is near to the ground. The patients work his/her everyday
work till afternoon.
§
When the fever appears, the patients feel cold,
start severing, 2-3 blankets isn’t sufficient to remove from the cold. If the
weather hot in summer seasons the patients feel cold during fever time.
§
With the fever cough is constant but density of
cough is low.
§
The fever is continuing 6 months up to 1year.
Then appear other symptoms.
Other
consequences, which can manifest anywhere from a few months to years after
infection, include fever, damage to the
spleen and
liver, and
anemia.
Common
and one of the classic symptoms is markedly enlarged (and therefore palpable)
spleen; the organ, which is not normally felt during examination of the
abdomen, may become larger even than the liver in severe cases.
Some other
rare symptoms include:
- Dizziness, Cough, Diarrhea,
- Didn’t feel
Physical strength,
- Felt thirsty but didn’t want to drink water,
- Frequency of urine left was increasing,
- Rice and other hard food disgust to patients,
- Fried chilly, tasty food was very favorite,
- Gastric (buk jala pora)was common.
Its
symptoms include:
- Patients
usually have low blood counts, including a low red blood cell count, low
white blood cell count, and low platelet count; blood became thick &
black.
- Progressive Emaciation.
- Weight loss.
- Progressive Anemia.
- Enlargement of the spleen
(splenomegaly) and liver.
- Malaise.
- Hyper pigmented skin of the
forehead, abdomen, hands, and feet in light-skinned persons.
- Occasional Bleeding.
These symptoms typically develop for months and
sometimes for years, after a person becomes infected, and if left untreated
then it may lead to fatal results.
Transmission
The ‘kala-azar’
disease is transmissible mainly by blood. If mosquito bites a ‘kala-azar’ patients and bites a normal person, then normal
person have turn into ‘kala-azar’ patient. The participants believe that
‘kala-azar’ also transmitted by human. If a normal
person uses patient’s plate, glass, dress, and sleep with him/her, then it
could be transmitted. But, two female households head disagree with this.
Because, they were fully attached with the patients and take care, but they
didn’t affected.
Because of some
misconceptions the ‘kala-azar’ patients have been stigmatized culturally and
socially. General people of the community try to avoid the patients. Normal
social interaction is classified for the patients. The patients didn’t allow attending
community’s general festival and rituals.
Curability
In the earlier period when many patients died
in ‘kala-azar’ they think that, in this disease
dead is bound. But, after a few years when patients got proper treatment and
came back home they believed if they can go medical and take treatment in time
then ‘kala-azar’ may be curable.
D.
General health seeking behavior: (Health care provider)
The participants said that, they didn’t
differentiate among other fever and ‘kala-azar’
fever. They sure when they took the patients in hospital and doctor said after
some test. Then doctor asked them to admit the patients in hospital. But it took
1-1.5 years. Because they didn’t account simple viral fever, cold, cough. For
these types of physical conditions they usually went village (local
chemist, Local unqualified doctor) doctor and
buy some medicine from local market. By this, they got cured.
The modern diagnosis,
Private qualified doctor; Government doctor isn’t available in their community.
It is minimum 10 k.m. far from their community. Besides, the participants
classified their health conditions and diseases. According to the classification
they decided where they should go? For simple
& normal condition they decide to go local chemist & local village
(unqualified) doctor. For medium or failure of local chemist & village
doctor treatment they decide to go upzila govt. hospital or private
qualified doctor. And for serious case like accident, bleeding delivery
complexity they decide to go district hospital.
The participants said that, traditional healers
isn’t available in their community both indigenous & Bengali muslim
community. Like ‘jondis’ & some other cases they search for
traditional healers.
Moreover, their decisions are manipulated by some
other factors. According to classified physical health conditions they decide
how much money & time they will spend. So, they try to cheap and low
distance health provider.
Besides this, the cultural and social interaction,
language, physical & mental satisfaction also plays a vital role.
Generally, local village doctor came from their own community. He can better
understand & patients also feel comfort to share physical disturbance to
him. Furthermore, the local doctor never prescribes high value medicine. He prescribes
according to patients economic conditions. Sometimes, doctor come patients home
to see patients conditions & give medicine.
E. Socio-economic condition
The socio-economic background is responsible
for ‘kala-azar’ & severity of the diseases. Hosing pattern, high density of
habitat, livestock rearing, occupational pattern & low literacy rate made
vulnerable the diseases condition & patients became deceased.
Occupation
Occupational pattern made them uncertainty
livelihood. Daily based wage is bound themselves to physically fit for labor.
They intentionally feel fear for sickness. So they generally ignored simple
bodily discomfort which made them for fatal diseases. When primary ‘kala-azar’
symptoms appeared they ignored & took general medicine. Other consequences
of ‘kala-azar’ is that fever is less in working time. It has two impacts. One,
the patients didn’t take proper rest for getting cure. Another, I can work why
I should go for treatment. Another, responsibility is bearing family. If have
taken the patients in Upzilla or District hospital then the wages of a day
didn’t earn. If the earning is consider, then never mange time for taking the
patient to seek better treatment. Thus treatments become delay & patients
turn in deceased.
Education
Education has strong relation of health care.
‘Kala-azar’ is happening for unhygienic environment which is suitable for
vector sand fly. If they get education they were aware about sanitation. Most
of the deceased, household heads & other participants have poor education.
They little bit know about ‘kala-azar’. What are the symptoms of this disease,
where they get proper treatment, what are their health rights? If they face
discrimination for seeking ‘kala-azar’ treatment, then what should they do?
Housing Pattern
Housing pattern is perfect for the habitat of
parasites. Only one participant have concrete house and all of them has house
made by soil. They usually used outside wall of living house for making cooking
materials from livestock shits. Generally there is one room for living all
family members. Livestock living house is attached with human living house.
Some cases livestock are rearing in ‘veranda’. The ratio of using
mosquito net is very poor.
F.
Causes of
death
‘Kala-azar’ is the worst disease. This
disease is sufferable & couldn’t identify the general people. So they
didn’t take necessary health care. Most of the households’ head of VL death households said that, ‘kala-azar’ patients
didn’t get proper treatment. Besides this they didn’t know where and how they
got the treatment. As well as general local (vilage medical practioner) doctor;
where they usually went for seeking treatment, they won’t know about symptoms of ‘kala-azar’. They
treated as genral viral fever or thyphoied. When it continued few months, skin
colour was changed then local people think it may be ‘Jondis’ (hepatytis
b). then patients turn under traditional heller (‘Kobiraj’). Because
there was a belief that ‘jondis’
couldn’t curable in modern alophathic medicine. The treatment of ‘jondis’
is long term process; it takes 1-2 months.
Why & which delay the ‘kala-azar’ treatment?
Generally, the ‘kala-azar’ affected area was remote in case of communication in
physically as well as culturally. There is no availability of modern medical
system. So, they didn’t get medical checkup like blood, urine or other test.
For this reason, ‘kala-azar’ patients identified in severe stages when spleen
is appear.
Moreover, the treatment of ‘kala-azar’ wasn’t
available neither in all govt. hospital and nor in any non govt. & free
clinic. Only a few specific govt. hospitals are providing ‘kala-azar’
treatment. The specific hospitals are far from the community and the transport
system wasn’t friendly. Furthermore, the medicine of ‘kala-azar’ wasn’t
available in those specific hospitals all the time. No specific permanent
(injection, tablet, saline, etc) medicine and sources of medicine was unknown;
where they could collect or buy. There was a confusion that, some respondent
got the medicine free and some had paid.
Besides, the treatment was long term; it
takes 20 to 30 days. During the treatment patients must be stayed in hospital.
All people are day labor both male & female, especially indigenous
community. So, in hospital there was must stayed an adult family member along
with patients. Though the ‘kala-azar’ treatment and the 3 meals of the patient
were provided free but the other member didn’t get any food or other support.
These also an extra burden for the patients family. For such a long time
patients and other family member couldn’t want to stay hospital for several
reason. Such as-
o
It has spent an amount of money.
o
Also reduce gradually daily income, because if
the patients is not earning member but the supporting member who are stayed
with patients are earning member. If a male (outside work-buy food & other
supporting medicine) and female (caring & nursing for patients) (father
& mother) earning member were stay 20-30 days without working, then
economic conditions of the family broken down.
o
Family distance, a month was staying outside
home, family conditions failed, other dependent family member were staying
family, created unexplainable situations.
o
Staying hospital was a miserable condition, poor
people didn’t get expected & warm behave from nurses & other supporting
stuffs. Especially indigenous people were faced some difficulty.
o
Moreover, an injection was painful & suffered
1-2 hour after taking injections, so many patients didn’t completed the course
for fear.
There was a belief that, hospital is a place
where is the last stages of a certain disease. A common explanation about
hospital was found in discussion. Hospital spelling in Bengali as ‘haspatal’;
they divided it in ‘has’=laugh and ‘patal’=death. If a patient
went in ‘haspatal’ he returns home with smiling or come in dead. So,
local people went hospital, when other options of treatment were failed. For
this reason, ‘kala-azar’ patients went hospital in the last stage with other
physical difficulties; Such as- tuberculosis, severe malnutrition, acute
gastroenteritis, spleenic infarction, acute renal failure and atrial septal
defect. Generally, the deceased people had more than
one other complexity with ‘kala-azar’. So, when
they got admitted for seeking ‘kala-azar’ treatment other diseases didn’t treat
parallel.
G. Treatment delays (Provider shopping)/ Not
treated?? Why?
Common scenario of ‘kala-azar’ patients was
treatment delay. Because they didn’t go appropriate doctor or place in the
beginning of the diseases. When they went for treatment then the conditions was
too late. Patients already associated other fatal diseases. Then the treatments
become more difficult. For these reason, some patients died in the meanwhile of
the treatment or after treatment.
In FGD, try to find out what is reason for
treatment delay? Answer is that-
In the earlier of ‘kala-azar’ there is no
different between other fevers. So, they didn’t account the symptoms serious.
Most of the people of affected area are day based wage laborer. If a person
till lay on bed they never count as disease or physical discomfort ness. The
primary symptoms of ‘kala-azar’ are irregular fever, cold & cough. This is
simple & normal physical dissatisfaction. It cured by local doctors
prescribe medicine. In case of ‘kala-azar’ by taking these medicines they got
cure. But, after some days fever is coming they take same medicine & got
cured. In the meanwhile they continue their daily work. When the fever wasn’t
cured properly after 2-3 months treatment; then they think the fever is turn
into typhoid. The treatment of typhoid is long and it does continue under local
doctor. It takes another 2-3 months. Then another symptom of ‘kala-azar’ is
being appeared, like change the skin & eye color is change. They think its ‘jondis’.
There is a misconception among the participants is that, ‘jondis’ is not
curable in allopathic medicine. So they try traditional ethno medicine (kobiraj).
The treatment of ‘jondis’ is another long term treatment system. After ‘jondis’
treatment the patients conditions become worst. In the mean time it passed
6-12 months. The people & patients still now recognize the diseases as a
‘kala-azar’. After failure of existing or popular sector treatment they
generally seeking better treatment & went govt. hospital. After checking by
govt. qualified doctor the patients became ‘kala-azar’ patients. In this case,
all govt. hospital has no ‘kala-azar’ treatment facilities. So, go for other
hospital & admitted the patients in hospital for a long time. By this way,
the treatment did delay. There are some points for treatment delay-
§ Lack of awareness about ‘kala-azar’ among the
general community people,
§ The local chemist & local village doctor
have no idea about ‘kala-azar’ symptoms, so they didn’t identified ‘kala-azar’
patients,
§ Unavailability of ‘kala-azar’ treatment in the
specific area.
H.
Further Steps: Participants Comments
There are some guide
line and advice get from the FGD. Which will be helpful for further studies.
Prevention
§
The ‘kala-azar’ affected village and community is traditionally unhygienic
and people are socially and culturally marginal in context of economic and
education. They are little bit aware of health and awareness. So, govt. and
other organizations will take clean &hygienic campaign in this area once or
twice in a year. Then along with ‘kala-azar’ other diseases will be reduce.
§
When people affected in ‘kala-azar’
then the family know about ‘kala-azar’. But other family & people are still
unaware about that. If possible to aware the community people by awareness
building campaign or program.
Treatment
§ The rate of
deceased in ‘kala-azar’ is high because of treatment
delay. They patients, people & local doctor couldn’t recognize the ‘kala-azar’.
‘Kala-azar’ is sure after diagnosis blood. The blood diagnosis isn’t available
in community level. So, if some blood diagnosis campaign will be operate once
or twice in a year, then the deceased rate may be reduce.
§ To provide special training on ‘kala-azar’ to local doctor that, they
could recognize ‘kala-azar’ patients and send them to appropriate treatment
place.
§ A
standard medicine of ‘kala-azar’ make available for local hospital.
I.
Conclusion
The principle cause of deceased in a ‘Kala-azar’ is the
improper treatment. Why? Answers are many-
·
First of all, in the beginning stage patients
didn’t identify as ‘kala-azar’ patients. Because, the symptoms are so much
complicated with other normal or viral diseases.
·
Belonging or popular local/village physicians
haven’t sufficient knowledge about ‘kala-azar’. If know diagnosis of
‘kala-azar’ patients are not in hand.
·
When the people confirmed about ‘kala-azar’ then
they didn’t know where and how they get the treatment.
·
The treatment of ‘kala-azar’ wasn’t available
neither in all govt. hospital and nor in any non govt. & free clinic. Only
a few specific govt. hospitals are providing ‘kala-azar’ treatment.
·
‘Kala-azar’ affected area is remote in case of
communication in physically as well as culturally in terms of getting
treatment.
·
No specific permanent (injection, tablet,
saline, etc) medicine and sources of medicine was unknown; where they could
collect or buy.
·
The treatment was long term; it takes 20 to 30
days.
·
Finally, treatment has some complexity such as-
Cost, Family income reduced, Family distance, staying hospital was a miserable
situation & some medicine like injection is painful. So, most of the
deceased didn’t completed the course.
