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OJHAS Vol. 9, Issue 3:
(Jul - Sep, 2010) |
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| Intervention
and Prevention of Hereditary Hemolytic Disorders in Two Ethnic Communities
of Sundargarh District of Orissa, India: An Experience from KAP Studies |
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Balgir RS,
Division of Human Genetics,
Regional Medical Research Centre, Indian Council of Medical Research,
Opposite Kalinga Hospital, Chandrasekharpur, Bhubaneswar-751 023, Orissa,
India. |
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Address For Correspondence |
Scientist-F/ Deputy Director (Senior Grade) & Head,
Department
of Biochemistry,
Regional Medical Research Centre for Tribals (Indian Council
of Medical Research),
Near NSCB Medical College, PO: Garha,
Nagpur Road, Jabalpur-482
003,
Madhya Pradesh, Central India.
E-mail:
balgirrs@yahoo.co.in |
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Balgir RS. Intervention
and Prevention of Hereditary Hemolytic Disorders in Two Ethnic Communities
of Sundargarh District of Orissa, India: An Experience from KAP Studies. Online J Health Allied Scs.
2010;9(3):4 |
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Submitted: Sep 13, 2010;
Accepted:
Sep 20, 2010; Published: Oct 15, 2010 |
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| Abstract: |
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Hereditary hemolytic disorders are important public health challenges
in India. They cause a high degree of morbidity, mortality and fetal
wastage in vulnerable communities. Tradition-bound-psychosocial influences
are detrimental to the process of prevention. This study was designed
to create awareness, motivate, and sensitize two major vulnerable tribal
communities: Bhuyan and Kharia for hemoglobin and allied hemolytic disorders
in addition to imparting prospective and retrospective genetic/marriage
counseling. Bhuyan and Kharia tribal people in Orissa live in clusters
practicing inter-village tribal endogamy and clan exogamy. For the present
study, random sampling procedure for the selection of whole village
was followed. Imparting of education, motivation and sensitization for
carrier detection were carried out through IEC materials, holding interactive
meetings and discussions at district, block and village levels. Both
prospective and retrospective intervention and genetic/marriage counseling
was done through the local PHC doctor. The pre- and post-intervention
knowledge, attitude and practice (KAP) studies were conducted. Tribal
people were not knowing the signs and symptoms of sickle cell disease
(2.1%) and beta-thalassemia (1.0%), but after IEC, their knowledge was
considerably improved (67.8%, 56.4%, respectively). Sickle cell patient
needs treatment (37.6%) like folic acid, blood transfusion, etc. Beta-thalassemia
is disease causes bloodlessness and is a transfusion dependent (73.2%).
All patients of thalassemia major or sickle cell disease have carrier
parents and carriers do not suffer from any clinical ailments. After
intervention, it was known that G-6-PD is an enzyme, which helps in
glucose metabolism of red cells (76.4%) and its hereditary deficiency
causes hemolytic anemia, jaundice and black urination (73.8%) in malaria
cases when anti-malarials are administered. Methodical and prudent intervention
and preventive strategies found positive and encouraging impact on the
affected people. Success of strategy showed apparent overwhelming response
of the tribal people towards changing the traditional mindset and improving
their health and quality of life.
Key Words: Hereditary
Hemolytic Disorders; Hemoglobinopathies; Sensitization and Motivation;
Carrier Detection; IEC/Intervention and Prevention; KAP Studies; Scheduled
Tribes
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There
have been difficulties for the prevention and control of hereditary
hemolytic disorders in the high risk communities of India. The high
prevalence of genetic and hemolytic defects and their cause of related
morbidity, mortality and fetal wastage drastically affect the reproductive
outcome.(1) Poor health leads to productivity loss and adversely affects
the economy in many ways. The tradition-bound-psychosocial influences
are detrimental to the process of elimination and prevention of genetic
disorders, and are further compounded by marked illiteracy and poverty.(2) Hence, there is an urgent need to find out strategies to combat
the genetic health problems faced by the vulnerable communities especially
in the developing countries like India.
For the
prevention and control of hereditary hemolytic disorders in at risk communities
for promotion of health care strategies and better quality of life of the
people, bringing of awareness about genetic diseases and imparting of health
education, carrier detection, and prenatal diagnosis prior to elimination
through termination of pregnancy, are highly essential.
The present
study was designed with the following specific objectives:
i) To sensitize, motivate
and educate the vulnerable communities through audio-visual
aids like posters, charts, pamphlets, interactive meetings, group discussions,
etc. for
detection of carriers of the hereditary hemolytic disorders such as
sickle cell disease, β-thalassemia,
and glucose-6-phosphate dehydrogenase (G6PD) enzyme deficiency.
ii) To provide
prospective and retrospective genetic/marriage counseling to affected
persons and families; and to evaluate the outcome of periodic follow
up, clinical
management and, intervention through local primary health centers (PHCs)/hospitals.
This
study was a part of our major project at the Regional Medical Research
Centre (RMRC), Bhubaneswar carried out in two ethnic communities, namely,
Bhuyan and Kharia of Sundargarh district in Western Orissa during the period
from January 2000 to December 2004.
The Bhuyan and Kharia tribes although originally belonged to two separate
ethnic stocks, but now each of them divided into three social groups
namely, the Hill (Pahari or Paudi) Bhuyan/Kharia, Paraja (Common People)
Bhuyan/Dhelki (Late Comer) Kharia and the Paik or Khandayat (Warrior)
Bhuyans/Dudh (Pure) Kharias, and are distinguished from each other on
the basis of three grades of primitive culture in the state of Orissa.(3) The Hill Bhuyan/Kharia, the primitive and backward section, represents
the hunting and food gathering stage of economic life along with the
practice of primitive culture and rudimentary shifting cultivation.
The Paraja Bhuyan/Dhelki Kharia section represents the more advanced
culture with habit of plough-cultivation and food production.
The Khandayat Bhuyans/Dudh Kharias have the most advanced culture, which
equates them with other non-tribal population of the region. The Dudh
Kharias have embraced Christianity about one and half century ago, whereas,
the Dhelki Kharias are hinduised group. The latter group preponders
over the other two groups in population size. The inter-group marriages
are not taking place at all. Reproductively and genetically, they are
completely isolated from each other. The Hill Kharias who reside in
Mayurbhanj district of Orissa were not studied.
Methodology:
In order to carry out the study, formal permission from the Department
of Health & Family Welfare, Government of Orissa; and the District
administration was taken after proper interaction and explaining the
purpose, aims and objectives of the study. Ethical clearance from the
Human Ethical Committee of RMRC (ICMR) Bhubaneswar was also obtained
for the smooth conduct of the study. Before the start of actual work,
the mobilization, sensitization and convincing of district administration
was done by holding interactive meetings at district headquarters with
the District Administration, Chief District Medical Officer, District
Welfare Officer of Sundargarh district for their cooperation or assistance/help,
if need arises during the course of study. It was ensured that at every stage of
implementation and conduct of the study smoothly, full cooperation anticipated
from all concerned communities/officials.
Selection of Target Population
and Sampling Procedure:
The
study was carried out taking into consideration the statistical component
and following the random sampling procedure for the selection of villages.
The tribal people in Orissa live in clusters or groups at particular
place and inter-village marriages take place because of tribal endogamy
and clan exogamy. In this case, the population of each tribe was representative
because the incoming and outgoing married women represented their native
villages. Keeping in view the practical aspects, operational
feasibility and vulnerability of the people to these genetic disorders,
it was planned to select most populated blocks of the Bhuyan and Kharia
tribes. Out of a total 17 blocks in Sundargarh district, 5 blocks,
namely, Balisankara, Subdega, Bargaon, Hemgiri and Lahunipara were selected
based on each tribe’s population data according to Adivasi Atlas of
Orissa.(4) Based on this census data, out of several villages so identified
in these blocks, the whole village of each community at random was selected.
For Bhuyan tribe, for example, Hemgiri (villages, Ratansara, Gad Dwar)
and Lahunipara (villages, Badjal, Budhabhuin, Kuliposh Colony) Blocks;
and for Kharia tribe, Balisankara (villages, Sarbahal, Chandnimal, Dhotipada),
Subdega (village, Ranpur) and Bargaon (village, Latagaon) Blocks were
studied (Fig. 1).
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Fig 1: Map of
Orissa state showing 30 districts and the study area (shaded) |
For
the coverage of two communities, a total of 422 families (195 of Kharia
and 227 of Bhuyan Tribe) with 836 and 767 persons, respectively of Bhuyan
and Kharia tribes were included in the study. Only five families in
Kharia and six in Bhuyan tribes were either not available or did not
respond to our motivational and sensitization campaigns even
after conducting the census, hence were not included in the analysis
(Table 1). Out of a total 767 persons belonging to Kharia tribe studied,
there were overall 422 persons (196 males and 226 females) who belonged
to Dudh Kharia and 345 persons (181 males and 164 females) were of Dhelki
Kharia tribe. Similarly, out of a total 836 Bhuyans, there were 213
(106 males and 107 females) Parajas, 244 (117 males and 127 females)
Paik or Khandayats, and 379 (184 males and 195 females) Pahari or Paudi
Bhuyans (Table 1). On the whole, a total of 1,603 Bhuyan and Kharia
tribals belonging to both sexes were screened for hemoglobinopathies and allied
disorders.
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Table 1: Tribe-wise
data of the subjects studied in Sundargarh district of Orissa |
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Name of Tribe |
No. of Families Census Taken |
No. of Families Not Covered |
No. of Families Covered |
Population |
|
Males |
Females |
Total |
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Kharia |
195 |
5 |
190 |
377 |
309 |
767 |
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Bhuyan |
227 |
6 |
221 |
407 |
429 |
836 |
Study of Knowledge, Attitude
and Practices (KAP):
Before starting the study, the knowledge, attitude and behavioral practice
(KAP) information was collected from adult individuals belonging to
both sexes in each tribe based on the semi-structured interview questionnaire
prepared for the purpose. Educational levels of respondents (410) belonging
to both sexes of Bhuyan and Kharia communities were recorded (Table
2). The responses were collected before the start of study as well as
after the dissemination of information, education and communication
(IEC)/intervention.
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Table 2: Educational
levels of the respondents belonging to Bhuyan and Kharia
communities of Sundargarh district, Orissa |
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Educational
Level |
Bhuyan Tribe |
Kharia Tribe |
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No. |
% |
No |
% |
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Graduate |
0 |
0.0 |
4 |
2.0 |
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10+2 (Intermediate) |
4 |
2.0 |
10 |
4.9 |
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Matriculate |
12 |
5.8 |
30 |
14.7 |
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Under-Matriculate |
20 |
9.7 |
34 |
16.7 |
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5th
Class Pass |
46 |
22.3 |
54 |
26.5 |
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Illiterate
but knowledgeable persons |
124 |
60.2 |
72 |
35.2 |
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Total |
206 |
100.0 |
204 |
100.0 |
Information, Education and
Communication (IEC):
After
sensitization of the District Administration and District Health Authorities
and getting assurance for the support, the sensitization, motivation
for carrier detection, education and awareness campaign was launched
at the village level in the selected villages by holding inter-active
meetings, discussions, explaining health hazards caused by genetic diseases
through pamphlets, charts (easily understandable by even illiterate
people), explaining the purpose of program in the local dialect and
language, involving local primary health center (PHC) doctor, block
development and panchayat officer (BDPO), auxiliary nurse and midwife
(ANM), child development and project officer (CDPO), local community
leaders (sarpanch, ward members, etc.), anganwadi workers, multipurpose health
workers, laboratory technicians, prominent village leaders, etc. This cordial
community participatory approach was overwhelmingly welcomed, appreciated and
reasonably successful. It was also ensured that program was tribe-oriented,
tribe-friendly and tribe-participatory, adjusting convenience and availability
of community members, without disrupting their routine or without harming their
interests under natural climate and ecological setting.
Intervention,
Genetic Counseling, Clinical Management and Follow up of Affected Families
through Local PHC Doctor:
Each
person who had given blood for investigations was provided with investigation
report card. As per the investigation report, the affected individuals
were given advice to take follow up action accordingly. Regular visits
to the selected localities at the interval of 2 months were done involving
the local PHC doctor for giving the appropriate advice to each subject for
clinical management, treatment and follow up of the affected and carrier cases,
as and when necessary.
To
affected individuals/families, the prospective/retrospective counseling
was given for community prognostic management and future planning for
these genetic disorders.(5,6) The basic idea of intervention was to
bring awareness in these tribal communities about the silent/hidden
killer hereditary/genetic disorders and their elimination. Interventions
were effected to all carriers as well as disease cases of hemoglobin
disorders like sickle cell trait and disease, Hb E trait and disease,
Hb D trait,
β-thalassemia
trait and HPFH and the G6PD deficiency through local PHC doctor in each village
by holding the interactive discussions taking them into confidence and keeping
privacy of each person during the course of this study.
For prospective
counseling, a carrier of marriageable age was advised to get the blood tested of
the partner before finalization of the matrimonial alliance. Similarly, to young
carrier children of these hereditary conditions, the parents were advised to
match the blood of prospective partner of their children before finalization of
the marital union. This will prevent the marriage between two carriers and
eliminate the chance of getting affected or diseased offspring. The carriers
were advised to marry only non-carriers of these disorders as far as possible.
For
retrospective counseling, the carrier parents were given options to take prudent
decision before going for a pregnancy, either to go for a child with a risk or
adopt a child of a relative or a friend without a disease as per the
convenience. Children of carrier parents in every pregnancy have 25% chance of
being diseased, 25% chance of having normal and 50% chance of having carrier
like the parents. If single partner is a carrier, then there is 50% chance in
every pregnancy of having carrier or normal child, but without the disease.
Those carrier parents, who already have the children, should go for testing
blood of their all children and follow the prospective counseling.
Those
parents who are carriers and want to have their own child were advised
to go for prenatal diagnosis (within 10-11 weeks of conception), if
they can financially afford to go to metro cities like Kolkata, New
Delhi, Mumbai, Chennai, etc. where these diagnostic facilities are available
in India.
KAP Studies
and Impact on Tribals:
Before
starting the awareness in the identified tribal people, the knowledge,
attitude and practice (KAP) responses were studied from 200 individuals
on a predesigned proforma as a measure of Pre-intervention as well as
later on, after intervention (Post-Intervention) from 210 individuals.
Educational levels of a total 410 respondents belonging to both sexes
of Bhuyan and Kharia communities were recorded (Table 2).
In
response to question of prevalent diseases in the village (Pre-intervention),
the majority of them responded in the following sequence: cough (87.5%),
fever (83.7%), cold (67.2%), malaria (56.6%), jaundice (43.7%), anemia
(38.2%), diarrhea (loose motion) (37.3%), joint pains (35.2%), abdominal
pains (33.8%), scabies (21.5%), Tuberculosis bacillus (17.6%), leprosy
(10.6%), asthma (5.7%), and so on. The people had no idea (knowledge)
about the hereditary health problems prevalent in their community. About
the common health problems according to them were: malaria, cough, cold
and asthma (breathlessness). Among the other health problems were: weakness,
body ache or joint pains, but they were not aware of the cause of these
symptoms. They did not feel any necessity for treatment. However, if
the illness persisted, they used to go to a local quack and occasionally
to PHC doctor for treatment.
Sickle cell
disease:
Tribal
people were not aware of the hereditary blood disorders during pre-intervention
period, but after intervention they could very well tell about sickle
cell disease (83.6%), β-thalassemia (56.4%), etc. They had
heard about sickle cell disease, but they did not know what it causes.
After intervention, they could explain that hemoglobin carries oxygen
and in the absence of oxygen, sickling occurs (67.8%). After intervention
they understood the difference between a sickle cell disease and a sickle
cell trait. Regarding the signs and symptoms of sickle cell disease
(Table 3), they did not know anything about it (except 2.1%), but after
intervention, their knowledge about the signs and symptoms was considerably
improved (67.8%) from the illustrated booklet provided to them free
of cost on the Information, Education and Communication (IEC) literature.(3,6)
They could be able to suspect a sickle cell disease patient with pains in
joints, anemia, jaundice, weakness, requirements of blood transfusion, increased
size of spleen or liver, etc. Earlier, they did not know that it was a fatal
disease. Now they know that sickle cell patient encounters a crisis and needs
treatment (37.6%) like blood transfusion, folic acid tablets, soda-amine, etc.
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Table 3. Pre- and post-intervention
knowledge of respondents for three hereditary hemolytic disorders in Bhuyan and Kharia tribal communities of Orissa.
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Knowledge
about the Disease |
Pre-Intervention
N= 200 |
Post-Intervention
N=210 |
|
Known |
Not Known |
Known |
Not Known |
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% |
% |
% |
% |
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Sickle
Cell Disease: |
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1. Signs and symptoms of sickle cell disease |
2.1 |
97.9 |
67.8 |
32.2 |
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2. Inheritance of sickle cell disease |
0.0 |
100.0 |
67.5 |
32.5 |
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3. Mode of transmission in offspring |
0.0 |
100.0 |
68.7 |
31.3 |
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4. Prevention of sickle cell crisis |
0.0 |
100.0 |
67.5 |
32.5 |
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5. Treatment of sickle cell disease |
2.3 |
97.7 |
37.6 |
62.4 |
| 6. Blood
transfusion |
0.0 |
100.0 |
73.2 |
26.8 |
| 7. Carrier
detection |
0.0 |
100.0 |
64.3 |
35.7 |
| 8. Precautions
to be taken |
0.0 |
100.0 |
75.5 |
24.5 |
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Beta-Thalassemia: |
| 1. Signs
and symptoms of beta-thalassemia major |
1.0 |
99.0 |
56.4 |
43.6 |
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2. Inheritance of beta-thalassemia |
0.0 |
100.0 |
67.5 |
32.5 |
| 3. Necessity
of treatment |
1.0 |
99.0 |
56.4 |
43.6 |
| 4. Transfusion
requirements of patient |
0.0 |
100.0 |
73.2 |
26.8 |
| 5. Carrier
detection of beta-thalassemia |
0.0 |
100.0 |
64.3 |
35.7 |
| 6. Prevention
of beta-thalassemia |
0.0 |
100.0 |
64.3 |
35.7 |
| 7. Precautions
to be taken |
0.0 |
100.0 |
75.5 |
24.5 |
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G6PD
Enzyme Deficiency: |
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1. Functions of G6PD enzyme |
0.0 |
100.0 |
76.4 |
23.6 |
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2. Signs and symptoms of deficiency |
0.0 |
100.0 |
73.8 |
26.2 |
| 3. Identification
of G6PD deficiency |
0.0 |
100.0 |
73.2 |
26.8 |
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4. Mode of inheritance of G6PD deficiency |
0.0 |
100.0 |
37.6 |
62.4 |
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5. Neonatal jaundice due to G6PD deficiency |
0.0 |
100.0 |
67.8 |
32.2 |
| 6. Treatment
of G6PD deficiency |
2.3 |
97.7 |
37.6 |
62.4 |
| 7. Preventions
against G6PD deficiency |
0.0 |
100.0 |
64.3 |
35.7 |
For
treatment, according to them, good food like mutton, chicken, egg, etc.
was the best treatment to recover from weakness. After our intervention,
they had realized that green vegetables and fruits were equally important
(34.5%) along with regular medical treatment from a PHC or other qualified
doctor (37.6%). They were aware of the precautions to be taken to prevent
a crisis (75.5%). The IEC booklet supplied by the investigator free of cost was
provided to them for future guidance and practice.
Beta-thalassemia
major:
Earlier,
they have not heard about beta-thalassemia syndrome (except 1.0%). Now
they know that thalassemia major is a disease that causes bloodlessness
(56.4%). They are well versed of the signs and symptoms of thalassemia
major and know that thalassemia major is a transfusion dependent disease
(Table 3). There is no permanent cure for thalassemia major (56.4%),
except bone marrow transplantation. A carrier of thalassemia is called
trait (67.5%) just like a sickle cell trait. All patients of thalassemia
major have carrier parents and carriers do not suffer from any clinical
ailments (67.5%).
When
two persons with thalassemia carrier or trait marry, then there is a
25% chance of having a child with thalassemia major, 50% chance of having
a child like parents and only 25% chance of a normal child (67.5%).
Two carrier parents of thalassemia, sickle cell disease or having any
such defect are advisable not to marry. If any one of the parents is
carrier, then there is 50% chance of the defect to be passed on to the
child (Table 3). After intervention, they know that persons who require
repeated blood transfusions are the most likely to be suffering from
thalassemia major or sickle cell disease (73.2%).
G6PD Enzyme
deficiency:
After
intervention, it is known that G6PD is an enzyme, which helps in glucose
metabolism of red cells (76.4%). The deficiency of this enzyme causes
hemolytic anemia, jaundice and black urination (73.8%) in malaria cases
when antimalarial drugs/medicines are administered (Table 3). This is also a
hereditary disease (76.4%).
To
a question, what was your source of knowledge about hereditary diseases
like G6PD deficiency, the answer was through the medical team which
frequently/regularly visited us, made us aware of hereditary diseases
of blood in which crisis can be prevented (64.3%). They discussed and
explained in various meetings, answered our questions, gave us booklets,
tested our blood, medicines distributed and reports were given, genetic/marriage
counseling advice (intervention) was given individually (confidentially)
in the presence of a PHC doctor for follow up.
Attitude
and Practice:
Regarding their
attitude towards any illness or disease was to do nothing about it, it will
automatically be cured, but after intervention, they (65.7%) had realized that
something should be done, it was better to go to a doctor for treatment or
he/she could give advice what to do (Table 4). About 57% of the respondents were
of the opinion to take illness very lightly, let the person die attitude
(52.6%). A majority of the people (65.7%) knew that local made liquor was a
panacea for all diseases, but 21.6% of the respondents disagreed with this
notion after intervention.
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Table 4. Pre- and post-intervention
attitude and practices of respondents towards three
hemolytic disorders in Bhuyan and Kharia tribal communities of Orissa |
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Attitude
and Practice |
Pre-Intervention N=200 |
Post-Intervention N=210 |
|
Yes
(%) |
No (%) |
Yes (%) |
No (%) |
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Attitude: |
| 1. No effort to do anything |
100.0 |
0.0 |
34.3 |
65.7 |
| 2. Local made liquor is panacea for all diseases |
65.7 |
34.3 |
21.6 |
78.4 |
| 3. Take illness very lightly |
56.9 |
43.1 |
36.1 |
63.9 |
| 4. Let the person die attitude |
52.6 |
47.4 |
40.7 |
59.3 |
| 5. Generally do not go for any treatment |
100.0 |
0.0 |
31.8 |
68.2 |
| 6. Use of traditional herbs at home |
96.5 |
3.5 |
45.7 |
54.3 |
| 7. If illness persists, consult a village quack |
84.4 |
15.6 |
27.5 |
72.5 |
| 8. Take magical treatment from a faith healer |
83.7 |
16.3 |
34.6 |
65.4 |
| 9. Limited paying capacity or habit of getting
treatment always free of cost |
100.0 |
0.0 |
45.7 |
54.3 |
|
10. Prefer to go to a private practitioner for medicine/
injection |
58.5 |
41.5 |
62.4 |
37.6 |
| 11. Go to
a PHC doctor at last stage when the patient
is about to die |
65.3 |
34.7 |
37.3 |
62.7 |
| 12. Negligence/ignorance
of a disease leads to
unrecoverable consequences/loss of life |
23.6 |
76.4 |
84.8 |
15.2 |
| 13. Government
provides medical facilities, we should make maximum use of them |
17.9 |
82.1 |
83.7 |
16.3 |
|
14. Our health is our prosperity |
15.9 |
84.1 |
85.5 |
14.5 |
| 15. A positive
attitude is equally necessary so that
community accepts the intervention |
12.5 |
87.5 |
89.4 |
10.6 |
|
Practice: |
| 1. No treatment |
79.3 |
20.7 |
43.7 |
56.3 |
|
2. Take delayed treatment |
65.8 |
34.2 |
23.2 |
76.8 |
| 3. Prefer
going to village quack instead of PHC doctor |
74.8 |
25.2 |
37.3 |
62.7 |
| 4. No follow
up for check up of any illness |
95.1 |
4.9 |
14.4 |
85.6
|
| 5. Use of
indigenous/traditional medicine |
53.2 |
46.8 |
45.6 |
54.4 |
| 6. Never
go to a PHC doctor for advice/suggestion |
100.0 |
0.0 |
67.7 |
32.3 |
| 7. Doctor
is God, who treats and gives medicine |
23.6 |
76.4 |
79.9 |
20.1 |
Most of the
people used traditional herbs (96.5%) at home, whereas, 45.7% differed from
traditional use of medicine after intervention and 3.5% did not know about
traditional medicine. A majority (84.4%) used to consult a village quack for
treatment, but post intervention period 72.5% people knew where to go for
treatment. Earlier 83.7% of the respondents
were of the opinion to go to a faith healer for treatment, but then
only 65.4% had the faith in faith-healer (Table 4). Tribal people in
general are habitual (100%) of getting treatment always free of cost,
but the post intervention scenario 45.7% differed from this conception.
Earlier 41.5% of the people used to go to a private practitioner for
medicine/injection but then only 37.6% of the populations went to them.
There was very strong attitude to consult a doctor when there was no
alternative, no hope and the patient was about to die in the last stage
(34.7%) and 62.7% differed with this notion (Table 4).
A majority of
the people (76.4%) did not know that negligence/ignorance of a disease leads to
unrecoverable consequences/loss of life, whereas after intervention only 15.2%
were unaware of such consequences. Tribal people (82.1%) did not know that
government provides medical facilities so that they could make maximum use of
them. However, 16.3% of the people were still there, who did not know about such
facilities. About 84% of the tribal people did not know that their health was
their prosperity, 14.5% of the people still did not believe in it. Tribal
communities do believe that a positive attitude is equally necessary so that
community accepts the intervention.
Despite
of all efforts, only 43.7% of the respondents realized the practice
of treatment for hereditary hemolytic disorders. However, the habit
of delay in treatment still persisted among them. There was a considerable
improvement (62.7%) towards their practice of going to a medical doctor
rather than to a quack (37.3%). Tribal people still did not know the
importance of follow up for check up (14.4%). The practice of indigenous/traditional
medicine was still continuing among them. However, they (67.7%) were
convinced to go to a PHC doctor for treatment and suggestion/advice
for hereditary disease. About 80% of these tribals had realized and practiced
that a doctor was a second God for them.
To
a question, how to prevent hereditary problems in the family or community?
The answer was to bring proper health awareness, education and screening
for carrier detection (64.3%) and help the families or tribal communities
to prevent the hereditary problems. This community participatory approach
was overwhelmingly welcomed. But such testing facilities for carrier
detection should be available at PHC/CHC or District Headquarters Hospital
(64.3%) level (Table 3) in every affected district or region of every
state in India.
This
study has developed an intervention package model for prevention and
control of hereditary hemolytic disorders in two scheduled tribes of
Sundargarh district in Orissa. As a part of the intervention, a sample
of two tribes (Bhuyan and Kharia communities) was screened for hereditary
hemolytic disorders; awareness was created and the counseling was offered.
The study was specifically designed to develop an intervention package
for prevention and control of hereditary hemolytic disorders with genetic
counseling as the principal intervention. Such a strategy can be successful
only if the intervention is acceptable to the community. The overwhelming
response (especially of incoming and outgoing married women in both
communities) to screening, report card demands, active participation
in interactive discussions, family counseling and coming forward for
carrier detection of partners of marriageable age, seeking screening
before planning pregnancy, adopting a child than going for pregnancy
of carrier parents, regular follow up of affected individuals during
the study period (2000-2004), etc. are the testimony of acceptance,
effectiveness and success of the intervention strategies in two tribal
communities of Orissa in the present study.
The impact of
this study for bringing awareness, sensitization and health education would
initially be expected to be slow, but it would be definite and regular in the
subsequent generations due to further enlightenment and the practical
experience. The present study was an attempt to change the mindset of the tribal
people.
Health
is a pre-requisite for human development and concerns with the well
being of a common man. Health is a function not only of medical care,
but also of the overall integrated development of society: cultural,
economic, educational, social and political organization. Each of these
aspects influences the health status and quality of life. It was realized
in this intervention program that there is a need to change the mindset
of the people. To achieve the stipulated aims and objectives, we had
adopted biomedical anthropological approach (7)
to successfully implement and evolve eco-friendly, tribe-oriented, tribe-friendly,
tribe-participatory and, health seeking behavior and cooperation model
for this study. As we know that the health comes by evolution, not by
revolution. Health must meet the needs of the people, as they perceive
them. Health cannot be imposed from outside against people’s will.
It cannot be dispensed to the tribal people.(2) Adequate sensitization,
motivation and proper education with sincerity for community participation
are the keys for successful and effective intervention. It has been
realized that imparting of relevant training to state’s local health
authorities for carrier detection including PHC/CHC doctor, paramedical
staff, health workers, technicians, pharmacists and ANMs for preliminary tests
are important component in the intervention strategies in the tribal communities
for prevention of hereditary disorders.
The foregoing
analysis of the available epidemiological data clearly indicates that hereditary
disorders are rapidly becoming a major public health concern in the state.(8)
The health care needs of most tribal populations necessitate that this challenge
be addressed promptly. Moreover, great advances have been made in our knowledge
of genetic disorders and scientific technology, and the principle of equity in
health care demands that the gap between medical progress and health care
services should be narrowed down whenever possible. The benefits of scientific
progress and developments must percolate to the needy and affected sections of
the society. There is an urgent need for translational research to narrow down
the gap between the laboratory and the actual beneficiaries at grass root level.
On
the other hand, a major proportion of the genetic disorders that are
commonly encountered in the state can be prevented by basic public health
measures and activities focusing primarily on education and approaches
in primary health care that are applicable in most countries. While
the basic genetic and diagnostic facilities should be available to deal
with all aspects of prevention and care, the establishment of such facilities,
if they do not already exist, may not require the sophistication and
high costs that many people think. Action is, therefore, required to
initiate activities to control genetic disorders in the country. The
nature and sophistication of such activities will vary from one state
to another, but the national programs should be established to provide
basic services covering prevention, health promotion and case management
activities.
To initiate
interventions for the control of genetic disorders at the national level, the
establishment of a vertical program for medical genetics is necessary. The
strategies and public health approaches can be incorporated into the existing
health care system. Integration into reproductive health program is probably the
most appropriate way to achieve this objective. A multitude of prevention
approaches can be feasibly integrated, at the primary health care level, within
the reproductive health programs already operating in the country, such as the
maternal and child health care clinics and family planning clinics. Although
some additional training and resources will be required, the potential benefit
is considerable in terms of reduction of suffering as well as reduction of the
health and economic burden related to the care of patients with genetic and
congenital disorders.
It
is recommended that in order to achieve the stipulated aims and objectives,
the sensitization, motivation and proper education with sincerity for
community participation are the keys for successful and effective intervention.
Imparting of relevant training to PHC doctor, paramedical staff, health
workers and technicians for carrier detection will further enhance the
prevention and control program. The approach should be eco- friendly,
tribe-oriented, tribe-friendly, tribe-participatory with health seeking
strategy and cooperation for the study. Peoples’ participation and
cooperation in every stage for these hereditary disorders are prudently
essential for better health and improving the quality of life.
Author
acknowledges the financial support from the Ministry of Health &
Family Welfare, Govt. of India through the Indian Council of Medical
Research (ICMR), New Delhi. Author is grateful to Dr. V.M. Katoch, Secretary,
Department of Health Research, Government of India and Director General,
ICMR, New Delhi for providing the necessary facilities. Thanks are due
to Chief District Medical Officer, District Welfare Officer and Primary
Health Centre doctors, Community leaders of Bhuyan and Kharia tribes
for their kind cooperation during our fieldwork in Sundargarh District
of Orissa. Thanks are also due to Mr.R.K.Mishra, Laboratory Technician
for his support in the field and laboratory work.
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