Social and Economic Research Project Reports
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Social and Economic Research Project Reports
Society and Leprosy: A Study of Knowledge,
Attitudes and Practices of Philippine Ilocanos
Luzviminda B. Valencia
Elizabeth R. Ventura
Consuelo J. Paz
Azucena C. Darvin
Adelwisa R. Ortega
Antoinette S. Rosel
College of Social Sciences and Philosophy
University of the Philippines
Final report of a project supported by
the TDR Social and Economic Research Component
TDR
UNDP/WORLD BANK/WHO Special Programme for Research and Training in Tropical Diseases (TDR)
No. 2
Social and Economic Research Project Reports
Society and Leprosy: A Study of Knowledge,
Attitudes and Practices of Philippine Ilocanos
Luzviminda B. Valencia
Elizabeth R. Ventura
Consuelo J. Paz
Azucena C. Darvin
Adelwisa R. Ortega
Antoinette S. Rosel
College of Social Sciences and Philosophy
University of the Philippines
Final report of a project supported by
the TDR Social and Economic Research Component
UNDP/WORLD BANKfWHO Special Programme for Research and Training in Tropical Diseases (TDR)
TDR/SER/PRS/2
No. 2
© World Health Organization 1988
SER Project Reports appear as part ofa series of uneditedfinal reports resultingfrom
projects supported by the UNDP/WORLD BANK/WHO Special Programme for
Research and Training in Tropical Diseases (TDR). These reports are submitted to the
TDR Steering Committee on Social and Economic Researchfor review and evaluation
upon completion of a project. Project reports included in this series have not been
published in their entirety elsewhere.
The designations employed and the presentation of the material in SER Project
Reports do not imply the expression of any opinion whatsoever on the part of the
Secretariat of the World Health Organization concerning the legal status of any
country, territory, city or area or of its authorities, or concerning the delimitation of
itsfrontiers or boundaries.
Authors alone are responsiblefor the views expressed in SER Project Reports and
for the presentation of the material contained therein.
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Foreword
The UNDP/WORLD BANK/WHO Special Programme for Research and Training in Tropical
Diseases (TDR) is a globally coordinated effort to bring the resources of modem science to bear on the
control of major tropical diseases. The Programme has two interdependent objectives:
• To develop new methods of preventing, diagnosing and treating selected tropical diseases, methods
that would be applicable, acceptable and affordable by developing countries, require minimal skills
or supervision and be readily integrated into the health services of these countries;
• To strengthen - through training in biomedical and social sciences and through support to institutions
- the capability of developing countries to undertake the research required to develop these new
disease control technologies.
Research is conducted on a global basis by multidisciplinary Scientific Working Groups on the six
diseases selected for attack: malaria, schistosomiasis, filariasis (including onchocerciasis), the trypano
somiases (both African sleeping sickness and the American form, Chagas’ disease), the leishmaniases and
leptosy. Scientific Working Groups are also active in the "trans-disease’’ areas of biological control of
vectors, epidemiology, and social and economic research. The training and institution strengthening
activities are limited to the tropical countries where the diseases are endemic.
The Social and Economic Research Project Reports series represents a new communication venture
undertaken by TDR’s Social and Economic Research (SER) Component This series has been launched
to facilitate and increase communication among social scientists and researchers in related disciplines
carrying out research on social and economic aspects of tropical diseases and to disseminate social and
economic research results to disease control personnel and government officials concerned with improv
ing the effectiveness of tropical disease control.
Research reports published in this series are final reports of projects funded by TDR and usually include
more material than ordinarily published in peer review journal articles. TDR considers this material to
be valuable both for investigators involved in the study of social and economic aspects of tropical diseases
and for professionals involved in training programmes in the social sciences, economics and public health.
The series should acquaint those working on similar problems with approaches undertaken by others, in
order to test new approaches in different settings, and should provide useful information to personnel in
disease control programmes and related agencies.
In the interests of rapid dissemination of social and economic research findings, supporting material,
e.g., tabulated data, has not been included in the present report. This material is, however, available upon
request to interested researchers. All requests for such material, citing in full the number, title and author(s)
of the SER Project Report, should be addressed to: Dr C. Vlassoff, Secretary, Steering Committee on
Social and Economic Research, TDR, World Health Organization, 1211 Geneva 27, Switzerland.
Tore Godal, Director
Special Programme for Research
and Training in Tropical Diseases
TDR
Hi
Preface
Since 1979 the Social and Economic Research (SER) Component of the UNDP/WORLD BANK/
WHO Special Programme for Research and Training in Tropical Diseases (TDR) has been
supporting research aimed at improving the effectiveness of disease control programmes through the
incorporation of social, cultural and economic factors into the design and implementation of control
programme activities. In aiming towards this overall final objective, two intermediate objectives
guide TDR's social and economic research activities:
• To determine the impact of social, cultural, demographic and economic conditions on disease
transmission and control.
• To promote the design and use of cost-effective and acceptable disease control programmes
and policies.
The study undertaken by Dr Valencia and her team falls directly within the framework of SER’s
first intermediate objective. The team studied leprosy-related knowledge, attitudes and practices of
the Ilocano population in the Philippines with the objective of improving leprosy control and
rehabilitation. Research methods used to collect data included: psychological tests for patients and
family members; a social linguistic survey for use in the design of health education material; and a
study of social structures in the affected communitiies. Vignettes were used to obtain better
understanding of the role of the leprosy patient in the community. Close contact was established with
the Philippine leprosy control programme.
This innovative project was followed by a further study of the interactions among Hansenite
patients, service providers and the community at large. The results of the follow-up study are
contained in Social and Economic Research Project Reports No. 3.
Patricia L. Rosenfield, Former Secretary,
Scientific Working Group and Steering Committee
on Social and Economic Research
Special Programme for Research
and Training in Tropical Diseases
TDR
V
TABLE OF CONTENTS
PAGE
I.
ABSTRACT
2
INTRODUCTION
3
A.
B.
C.
D.
The Setting of the Study
Method
Sampling
Review of Literature
1. The Psycho-Social Viewpoint
Components of the Disease
2. Cultural Viewpoint
II.
12
DATA
A. Social and Economic Profile of the
Respondents
1.
2.
3.
4.
5.
Age
Educational Attainment
Civil Status
Sex Distribution
Occupations
B. Native Theory of Causation of the
Disease vs. "Germ Theory"
C. Modes of Transmission
D. Prevention of Leprosy
E. The Correlation between Attitudes
and Knowledge
III. STRESS AND COPING PATTERNS AMONG HANSENITES.. 21
IV.
RECOMMENDATIONS
24
NOTES
26
APPENDICES
I. List of Barangays of Bantay,
Ilocos Sur
II. Prevalence Rate as of 1980 of the
Different Barangays of Bantay,
Ilocos Sur
- 2 -
ABSTRACT
The integration of the social sciences and pure sciences has long been
a global interest but very few have attempted to work on this existing gap
in the field of research. This limitation is the predisposing factor
behind the conceptualization of this ongoing investigation. This paper
seeks to correlate the medical aspects (causation, transmission,
symptomatology and treatment) of leprosy with the psycho-socio-linguistic
facets (beliefs, knowledge, attitudes and practices) of the disease. The
respondents for this study are divided into three sets, namely, the
patients, the critical informants (who are close to the patients) and the
key informants (who are unrelated to the patients but are occupying key
positions in the community). Of the 213 respondents, 96 come from
Barangay Guimod, Ilocos Sur, while 117 come from Tala, Novaliches. An
analytical comparison of the data have, so far, yielded results stressing
poverty-related circumstances as the major cause of leprosy prevalence in
these areas. It has also been shown that the respondents have overlapping
notions of causation and transmission, and of prevention and treatment.
These, and the rest of the preliminary findings suggest that the present
leprosy control programmes be equipped with a stronger, concrete
psycho-social foundation for greater efficacy.
3
I.
INTRODUCTION
The UNDP/World Bank/WHO Special Programme for Research and Training in
Tropical Diseases has focussed on the major objective of increasing the
effectiveness of disease control programmes through the integration of
human behavioural factors in programme design and management. In this
context, behaviour was defined to include social, cultural and economic
factors.
In connection with the above objective a multi-disciplinary team, all
coming from the University of the Philippines, College of Arts and
Sciences and the Institute of Public Health, sought to consider the
following:
1.
To describe folk beliefs and traditional knowledge about the
causation, transmission and symptomatology of leprosy;
2.
To assess the existing attitudes towards the disease and stress
perceptions of afflicted patients in the locality;
3.
To describe the cultural definitions of the disease and the
social practice of the people relating to the transmission,
treatment and prevention of leprosy; and
4.
To utilize the data to be able to formulate recommendations for
the management and control of leprosy in the Philippines.
A.
The Setting of the Study
The study site was Barangay Guimod , one of the 34 barangays in the
town of Bantay, Ilocos Sur. The total population of Bantay, as of the
1980 census, was 22,282. The study site, Guimod, has a total land area of
490 hectares, 489 of which are privately owned. At the time of the survey
there were 500 people living in the area. This constituted 120
households, and of this number, only very few had declared an income of
over Pl,000.00 per annum; in fact only 3 households reported that they
had P10,000.00-20,000.00 at least per annum. The rest of the 120
households indicated "no income", saying that they were unemployed.
Included among these unemployed people or those earning the lowest income
were 36 families whose family members are in the active list of patients
of the Vigan Skin Clinic.
Generally, their means of livelihood included farming, livestock
raising, cottage industries, private employment, government employment,
skilled labor, unskilled labor, transportation and commerce.
4
B.
Method
The design of the project called for a triangulation of data gathering
and analytical techniques using three different independent strategies,
namely the use of survey questionnaires, linguistic analysis of taped
interviews and the administration of two psychological instruments, the
Rorschach and Philippine Thematic Apperception Tests. The survey
questionnaires consisted of two structured interviews which were
pre-tested three times by the team before they were finally administered.
one part is
Basically, these interviews contained two major parts:
designed to elicit data from the patients who were in the active list of
the Skin Clinic at the time of survey and the other set of questionnaires
was used to gather data from the Critical Informants (CRIs) and the Key
Informants (KIs). The survey also included patients as well as CRIs and
KIs living in Tala Leprosarium in Novaliches and around the area of
Caloocan City. The reason for including them was to compare the responses
of these patients who are institutionalized, as well as of urban CRIs and
KIs with those of the rural out-patients living in their domestic milieu
and CRIs and KIs who are living in the rural areas.
The critical informant or CRI is a person who is closest to a leprosy
patient. This person may be the patient's spouse, a relative, a friend,
or even just a neighbour so long as this person has a direct knowledge of
the patient. This type of informant usually takes care of the patient and
more or less knows the history of the patient's sickness. Above all, he
is a confidante of the patient. Sometimes a CRI is an ex-patient
himself.
Through the CRI, we are afforded an intimate glimpse of how the
disease has brought about changes in the patient's outlook on life and in
his interactions with others, whether he has adjusted easily or is having
a hard time accepting the fact of his illness. From questions asked of
the CRI, we learn whether the disease has brought any problems to his
family and relatives and if so, what the effects are or were.
A key informant (KI), on the other hand, is someone who is not related
in any way to a patient but has some knowledge of leprosy. In this case,
the field interviewers contact various members of the community, such as
teachers, doctors, nurses, municipal or barangay officials, social
workers, priests or ministers.
Information gathered from the KIs provide us some insights on how the
community reacts to lepers, especially from the economic standpoint.
Among the questions asked of KIs are whether they are willing to employ a
person whose leprosy has been cured and conversely, whether they would
dismiss an employee found suffering from leprosy.
The interview sessions were taped and brought to the Department of
Linguistics and Asian Languages for language analysis. The same applies
to the data gathered through the administration of the Rorschach and
5
Philippine Thematic Apperception Tests to the respondents. The subjects
for the psychological testing were drawn from the same list, i.e. the list
of active patients of the Skin Clinic at the time of the survey. Usually,
the members of the research team were introduced to the respondents by the
personnel of the Vigan Skin Clinic. After the usual amenities, the
Philippine Thematic Apperception Test was administered first; then the
Rorschach was given. The psychologists also did indepth interviews on the
subjects; they asked questions on dreams, best and worst experiences,
knowledge, feelings, attitudes and coping reactions. Later on,
card-by-card content analysis was used to interpret their results.
Thirty-eight respondents participated in this portion of the study, 18 of
whom were relatives (CRIs) being included as a comparison group. They
were considered to be a good source of data as they shared with the
patients similar social and physical environments.
The linguistic approach was chosen as the best source of information
concerning man or any aspect of human endeavor. It is through language
that man reports his experience, imparts his knowledge and makes known his
inner-most feelings and thoughts.
The lexical or vocabulary choice one makes in reporting an experience,
reacting to a situation or in imparting information is the obvious means
of knowing and understanding the message one wishes to impart. But one’s
choice of syntactic structures and signals, though not consciously made
and not as obviously identifiable as vocabulary choice, is just as
effective a means of knowing and understanding the different nuances of a
message. These structures allow the listener to feel and react to what
has not been said outright, for whatever reasons the speaker may have.
The objectives of this linguistic study were to elicit, classify and
analyze the linguistic structures used by Ilocanos in order to gather
information regarding their knowledge of leprosy and their beliefs,
attitudes and practices concerning the disease.
These objectives were considered in the light of sociolinguistic and
psycholinguistic factors. The analysis took into consideration not only
the different types of structures used by the informants but such social
factors as place, socio-economic status and occupation that influenced the
informants’ choice of structures and the psychological factors such as
mood, emotion, relationships and motivations which influenced this choice.
The study is inductive or empirical in nature, hence the results
reported here have arisen from the gathered data.
The procedure for the linguistic study began with transcriptions of 27
taped interviews representing 15 Hansenite patients, medical personnel,
relatives and other informants. These interviews were translated first
into Filipino and later into English. Since Filipino and Ilocano are
closely related Philippine languages, it was possible to make a one-to-one
translation from Ilocano to Filipino. This made typological verification
possible, which in turn facilitated the checking and counterchecking of
the Ilocano material. The Filipino translation also facilitated the
6
actual analysis of the material. A one-to-one translation followed by a
free translation in English was then made. But for the purposes of this
paper the Filipino translation is not included. What is given are the
samples in Ilocano with a one-to-one translation in English followed by a
free translation. The data was then carefully examined qualitatively for
lexicon and syntactic structures to ascertain direct or implied
information. They show how the informants made use of the different
devices, whether consciously or unconsciously, to set a mood, reveal an
attitutde, impart an opinion and convince the listener of its merits, and
emphasize, play down, or avoid a topic.
Two folktales in which a character was suffering from a skin ailment
were also examined. However, some of the interviews were not included in
the analysis since the informants gave curt answers or were not
responsive, possibly due to shyness, embarrassment, ignorance or fear.
The Tala (N = 117) respondents representing the urban sample were
excluded from the linguistic survey and the psychological testing. As
they represented various ethnic groups with different local dialects their
responses were tabulated only for the sociological component of the
study. At best they were used to compare rural and urban reactions to the
disease; and., to describe the behaviour of the non-institutionalized and
compare it with that of the institutionalized in the city leprosarium.
The Tala samples were also Ilocanos and were comparable in age to the
Guimod group. All in all there were 41 patients from Tala and 34 patients
from Guimod3.
C.
Sampling
Basically, a multi-stage cluster, purposive sampling design was used.
From among the municipalities of Ilocos Sur, one municipality was chosen
and within this, one barrio was selected as the primary (sub-sample)
area. From this we drew three major sets of respondents in the study:
the patients themselves, the CRIs and lastly the KIs. The selection of
Bantay as the municipality from which barangay Guimod was drawn was based
on the fact that Bantay has had the highest incidence of leprosy for the
past five or six years (but lately only second highest) in Ilocos Sur.
The CRIs were drawn from the families of the patients and the
sub-sample of KIs were chosen by type of occupational groupings and their
assumed knowledge of the community etc.
As a kind of control variable, a sample of 37 institutionalized
patients at the Tala Leprosarium in Novaliches, Quezon City was drawn by
quota sampling.
D.
Review of Literature
There is very little scientific literature on leprosy. The fact is
that from the years 1952-1981 issues of the American Journal for Tropical
Medicine and Hygiene have come up with merely 33 titles of experiments on
7
leprosy^. Volumes 1 to 15 of the periodical, Social Science and
Medicine, published from 1967 to 1981 have been reveiwed but have produced
no articles on leprosy. Soldevilla^ similarly notes that advances in
leprosy research have indeed been slow.
However, it can be said that the quality of the information gathered
over the years more than makes up for the small quantity of research
done. Still, some authors e.g. Kato6 claim that what needs primary
consideration is not really the number nor the kind of studies done but
rather, whether the current trends are moving in the right direction,
which is, toward obtaining more effective control and consequently
eradicating leprosy.
We can classify the literature on leprosy as medical, psycho-social
and cultural in approach. Of the 126 articles reviewed for this study, 94
(74%) are classified as medical in approach, 28 (22%) as psycho-social,
and 4 (4%) as cultural.
Research, both foreign and local, has more output in the medical than
in the two other academic disciplines. Over the years, greater
concentration has been given by the man to the area of sciences so that
with out knowing it, he has been proceeding under his own narrow vision of
the leprosy problem. The Medical Viewpoint, as expressed in the
literature had focussed on leprosy as a chronic and infectious disease and
as caused by a micro-organism called Mycobacterium leprae. A hundred
years after the discovery of this causative agent by Hansen, all attempts
made to cultivate this acid-fast bacilli (AFB) in artificial media
failed, This is one major obstacle to the efforts of finding the complete
panacea for this disease.
M. leprae is an intracellular bacilli, known to be basically harmless,
devoid of toxins and incapable of causing tissue damage
They become
destructive only when reactional complications develop due to adverse host
immunological responses.
For a long time, it was believed that leprosy is specific only to
humans. The view was that human cases discharging M. leprae constitute
the only sources of infection^. However, in
in his
his article
article Rodrij
Rodriguez^
mentioned a very important and unusual discovery by Dr Binford 10 and
co -workers who found armadillos naturally infected with
M. leprae. This is significant in assessing the danger that the bacilli
pose not only to the human race but to lower forms of life as well.
Furthermore, the literature on the medical aspect of the disease
revealed varying schools of thought regarding its communicability, For
example, many leprologists insist that leprosy is the least communicabl e
tit
i-i
___ _______________ x. _ -C
n d
T «-v t
of all communicable diseases. One proponent of this is Dr C.B. Lara
of the Culion Sanitarium in the Philippines. In Lara’s study, which took
28 years and involved 2,000 children born and living in the Culion Leper
Colony, it was shown that the risk of contracting leprosy, even under
maximum exposure in children, was less than 25 per cent.
8
The other school of thought propogates a different theory.
Conflicting reports exist. For instance, S.R. Lang said that leprosy has
apparently become a disease of high infectivity but low pathogenicity;
hence, no longer can it be maintained that prolonged close contact is
necessary for infection to take place. However, the dissemination of
bacilli from infected nasal septa may not necessarily be via the airborne
route alone but it may also be through the heavy contamination of objects
that subsequently come in contact with unhealthy skin^ e The present
team feels inclined to adhere to this theory because of the empirical
evidence/observations in the study sites where it is not uncommon to find
a single household with 4-6 members afflicted with the disease.
Although many authors (such as Muir and Rogers: 194613, Marchoux:
1934 , Olsen and Porritt: 1947 , Lara and Nolasco:
195616,) are
in support of the cutaneous route as the mode of leprosy transmission,
there is an increasing opinion rejecting the skin as the most usual or the
only portal of entry of the M. leprae. In addition, a number of studies
undertaken by Dungal (I96017,) and Munos Rivas (194218, 195819,)
suggest that since it is partially certain that the bacillus is incapable
of penetrating intact skin, then biting or blood-sucking insects may be
the logical and even obligatory transmitting agents of the disease.
Despite all these assertions, nevertheless, many scientists and
leprologists believe that much uncertainty still surrounds the exact
manner of leprosy transmission.
It seems, however, confirmed by the scientific literature that
appropriate exposure is the key to the transmission of leprosy and that
the degree of resistance of an individual determines the fate of the
JL. leprae that he has contacted. Other factors that could effect
successful transmission would be the duration and intimacy of the contact.
That leprosy is hereditary is considered an old and wrong notion by
many authorities in the area but then a number of researchers continue to
harbour the idea of a genetic susceptibility to leprosy. They suspect
that some have an inherited predisposition to the disease and that this
could very well account for the concentration of leprosy in certain
families aside from the more accepted theory of increased exposure.
The medical literature on leprosy agrees upon the fact that leprosy is
generally a very chronic disease and that the severe forms tend to be
progressive and last for life, if untreated. The studies have also
confirmed that this disease is not only crippling and disfiguring, it also
shortens a person's life expectancy by a few years. The disabilities
caused by leprosy affect mainly the limb extremities and the face,
including the eyes, making leprosy a grave threat to the working capacity
of its victims.
The medico-legal definition of a disability is the loss of function or
earning power and is graded only by the extent to which it interferes with
a person's ability to earn his living or to enjoy a normal life. On the
other hand, deformity denotes a change or alteration in the form or shape
of a part of the bodyzu.
9
91
In the study by Reyes , it has been found that the involvement of
the sensory component of the nerve is more severe in degree and occurs
earlier than that of motor fibers for those afflicted with leprosy.
Furthermore, they observed that the upper and lower extremities were
generally affected equally in the lepromatous type whereas the peripheral
nerves in the upper extremities were more severely involved in the
tuberculoid type. This peculiar predilection of M. leprae for the
peripheral nerves has also been given emphasis by Binford2^ t anj others.
The medical studies have to this date agreed that no preventive
technique has yet been devised or discovered and disease control is merely
based on the proper and timely treatment delivery. Poor and inadequate
treatment often leads to drug resistance and such resistance is presently
a growing world problem23.
A case in point is the use of Dapsone in treatment. Studies have
revealed that this drug has a slow effect in the serious forms of
leprosy . Yet many Third World nations, the Philippines included,
still continue using this drug to treat even the critical forms of the
disease. Furthermore, it must be understood that treatment can only be
possible through recognition of the symptoms associated with Hansen’s
disease.
Prevention of drug-resistance requires a combined therapy for
multi-bacillary types maintained at a full dosage. This method of
treatment more or less ensures that should the occurrence of mutant
organisms make one drug fail then the other drug would still be effective.
Another complicating factor in the treatment of leprosy is the
incidence of relapse. Waters has defined relapse as the renewed
multiplication of M. leprae resulting in the appearance of new lesions in
Lepromatous leprosy (LL) or Borderline leprosy (BL) patients who have been
responding favourably to chemotherapy where the disease was becoming or
had become quiescent or even arrested. A relapse may also be due either
to the emergence of drug-resistant M. leprae or to multiplication when
chemotherapy is stopped2 . Increased drug intake without the doctor’s
prescription due to the patient’s over-confidence on the beneficial effect
of the drug may likewise lead to a reaction or a relapse.
In view of these medical findings, it is therefore imperative to study
control over the leprosy predicament.
1.
The Psycho-Social Viewpoint Components of the Disease
The layman's term for leprosy is Hansen's disease. Articles reviewed
showed that the disease is very much a psycho-social issue that the world
cannot choose to ignore. As G.H. Ree has professed, ”No other
pathological state has led to such psycho-social reaction as leprosy,
affecting both the patient and the community in all aspects of their
cultural and social life.
Psycho-social reactions to leprosy are
obviously of importance in epidemiology and control26.”
This viewpoint
10
has been confirmed by other researchers like Fasal, et al., who asserted
that traditionally and historically, the modern social face of leprosy
finds separation from the clinical faces of leprosy difficult*?. This
can be explained by the fact that from the roots of the leprosy problem to
its yield, socio-psychological factors and implications abound.
A clear-cut example of a psycho-social implication of leprosy is the
birth of the so-called "leprophobia" or fear of leprosy. Sociologists in
leprosy claim that education will destroy leprophobia. However, education
as a cure for leprophobia was found to have definite limitations.
Only in very few cases, if there are any at all, can education
completely assure people of the harmlessness of leprosy and thereby erase
erase
their fear and hesitancy toward anyone or anything that has to do with the
disease.
------- The stigma associated with leprosy has existed ever since man
can
The stigma seems as old as the notion of time itself, so
----remember.
------that it is almost impossible to think the world will ever be without it.
As Fite has written:
"I find it difficult to believe that a broad educational plan in
leprosy would not create several times the ;general amount of
leprophobia it dispelled, The assumptions that educational procedures
would eliminate leprophobiai are inadequately founded; that they would
have an ameliorating effect among many men is true, but when
one
examines what has happened with respect to othejr educational effects
in other diseases the grave doubt is aggravated^°."
In other words, there exists the possibility that learning about the
the
frightening truths of the disease could only enhance the negative attitude
that most people have towards it. This
* social
2 1 insensitivity accorded to
many of the lepers is a blow to their psycho-social
make
.
3-up and mental
health.
Since the leprosy patient is usually aware of the negative attitude of
the community to the disease and <eventually to those afflicted by it, it
does not seem unthinkable if he develops a warped personality from the
anguish that his depressing condition is causing him. This change in his
psychological state and perceptions may finally result in his adoption of
anti-social attitudes. Such reactions of the leprosy patient serve as his
coping mechanisms to salvage the dwindling dignity that he actually has
even if he may no longer feel it. After the panic and the depression
comes the withdrawal from the world that once acknowledged him like any
other human being.
Most, if not all of them, 7learn to destigmatize the situation. Thus,
many take up permanent residence at the center <or in a leper community
where they can identify with someone else, work
marry and perhaps have
children. In the words of Alexander and Moulun^9 they protect
themselves by "colonizing" . They create a world of their
own where they
feel accepted and perhaps, needed.
11
It is thus suggested that care is the basic attitude that must
accompany the treatment and rehabilitation of leprosy patients. Cure
without care makes us rulers, controllers manipulators and prevents a
real healing community from taking shape. 0
Most of the literature on leprosy therefore proposed that treatment
and rehabilitation of lepers be made the responsibility not only of people
in the medical field but of the whole society. How can this be realized?
the idea is quite simple but the task involved is not. Despite the doubts
clouding the effectivity of education as the agent of social change in
this respect, researchers still see the need for health information/health
education in counteracting the fear and prejudice directed toward the
leprosy patient.
Fritschi defines rehabilitation as a cooperative enterprise involving
the medical team, the patient and society at large and requiring faith in
one another and hope for the future. In such a relationship, the
community is taught to extend help naturally when it is needed without
patronizing or pity while the disabled accepts the help he needs without
self-conciousness, resentment or self-pity. In Bauru, Sao Paulo, Brazil
the SORRI (Sociedade para a Reabilitacao e Reintegracao do Incapacitado),
an integrated vocational rehabilitation center, is continuously proving
that a useful and normal life still awaits leprosy patients.
Health education, on the other hand, is based on the behavioural
sciences and applies insights from these sciences to change people’s
behaviour in a way that is beneficial to their health^ .
In the Philippine scene, Dr Mita Pardo de Tavera blamed poverty as the
socio-economic factor for the prevailing decline of health among
Filipinos. Approximately 80 percent of the Filipino population are bereft
of the satisfaction of the basic human needs and are, therefore, in no
position to resist the easy breakdown of their bodily defenses to the
rising leprosy prevalence. Diseases such as tuberculosis,
schistosomiasis, polio, rabies and malaria are likewise increasing
tenfold. Hence, although immunity to leprosy is largely inborn, the
Filipino’s susceptibility to the disease, may be heightened by
environmental circumstances like improper nutrition, pregnancy and
co-existing disease.
2.
Cultural Viewpoint
The other set of literature on leprosy expresses the culture
perspectives. Culture is an all-encompassing word that traces the entire
way of life of a people. However, it has not clarified the most potent
cultural facet that concerns the problem of leprosy.
In 1952 Frederick Lendrum hinted at language as that cultural facet
when he wrote that "in no other disease is nomenclature a major hazard for
public health ". From thereon, startling discoveries have been made on
how the many "connotations" of the term leprosy could have paralyzing
12
effects on public health measures, effective treatment and control of the
disease, rehabilitation and social acceptance of the diseased.
For many centuries now the mere mention of the term "leprosy” elicited
great fear in many parts of the world. In fact, in the State of Hawaii
the law has imposed as official only the use of the term "Hansen’s
Disease" to neutralize the wave of terror associated with "leprosy" that
the Bible has helped to propagate. Data gathered in this ongoing research
has similarly shown how practices and beliefs or superstitions have
compounded the problems of case finding and management of the disease.
There are many articles on leprosy, but being mostly medical in
perspective, they did not deal directly with leprosy as a social problem.
The numerous foreign studies especially are on disease experimentation,
clinical tests, etc., and indeed reveal significant facts from which man
However, it is disillusioning to note that in both the
can truly benefit. However,
local and foreign research institutions there still exists a wide gap in
research between medical and psycho-social-economic dimensions of the
disease. The present study on leprosy intends to fill this gap.
II.
DATA
A.
Social and Economic Profile of the Respondents
The total respondents to the survey questionnaires were 213.
Ninety-six or 45 percent were from Guimod while 117 or 55 percent were
from Tala.
For the sociolinguistic data only 35 taped interviews of the 96
Ilocanos, 15 of which were Hansenites, were analyzed. The remaining taped
interviews were those of the CRIs and KIs (relatives, barrio officials,
doctors and nurses and some towns people who claimed not to have had
contact or who have had no ]_personal
’ ’knowledge
" '
of Hansenites) and also of
the 96 respondents, 38 subjects participated in the psychological aspect
of the study.
1.
Age
Most of the patients (Guimod) belong to the age group of 10-19,
younger than those taken from Tala, who were in the age bracket of 20-29.
2.
Educational Attainment
The majority of the patient-respondents and critical informants in
Guimod finished some grades in the elementary level. The same applies to
the respondents from Tala.
In both sites, the majority of key informants had finished their
education and were practicing their profession. There are 18 elementary
schools in Bantay, all of which are public schools, but no school for the
13
secondary level. As for tertiary education, there is only one private and
one public school. This is also one reason why the patient-respondents
and the critical informants of Guimod only reached the elementary level.
No secondary school is located in the municipality of Bantay. They
have to go to the neighbouring municipalities if they want to continue
with their education. Most people find this travelling to the
neighbouring municipalities taxing. They would rather stay home and do
their household work. They see this as more rewarding than finishing
their education. Most of the time poverty is associated with their
inability to proceed to secondary education.
In the case of respondents in Tala, a school right in their vicinity
caters to the educational needs (from elementary to tertiary level) of the
patients and their relatives. In this school, they are also taught some
vocational and technical skills.
3.
Civil Status
The majority of the respondents were married (61.0%), while 73 out of
213 or 34.4% were single and 3.7% are classified as widow or widower.
Only 2 respondents were separated from their spouses.
4.
Sex Distribution
There were more female than male respondents except in the case of the
key informants of the Tala group. The distribution of patients for
Guimod, however, represents the population of all its active cases.
Hence, no sampling for the set of patients was necessary in Guimod unlike
the patient population in Tala where quota sampling was done for
comparison purposes. The big difference between the number of male and
female critical informants could be proof that the traditional role
attributed to women all over the world concerning the caring of the sick
still exists to date.
5.
Occupations
The three occupations with the highest frequencies in descending order
are doing domestic jobs (storekeeping, animal husbandy, laundering etc.),
farming and teaching. Most of the Guimod patients and critical informants
interviewed are farmers while the majority of the Guimod key informants
are teachers. In Tala, on the other hand, most of the patients and
critical informants are employed in domestic jobs whereas many of Tala key
informants are in the teaching profession.
B.
Native Theory of Causation of the Disease vs
"Germ Theory”
In the assessment of the respondents' knowledge about the causes of
leprosy, the data indicated the following: unclean surroundings, poor
helth, not obeying doctor's advice and handling or smoking tobacco which
is not well-cured. Eight Guimod respondents and nine Tala respondents,
14
mostly key informants, mentioned bacteria as the cause of the disease.*
Some other causes mentioned by the respondents are prolonged contact with
a leper, too much liquor, frequent "galis" or scabies, bad or unclean
blood, "pasma" or exposure to extreme change of temperature, and fate or
will of God. The majority (53%) of the respondents considered poor health
or lowered resistance as the cause of leprosy. Unclean surroundings is
the most frequently mentioned cause. Kendall's coefficient of concordance
was computed for six types of respondents: for patients, critical
informants and key informants of Guimod and Tala Leprosaria. There was
general agreement among the six types of respondents as to knowledge of
the causes of leprosy. The rank correlation coefficient which has been
computed showed agreement in the ranking of the possible causes of
leprosy.
In effect, all the types of respondent agree that there is a common
set of determinants of leprosy. This commonality of poverty-circumstances
produce the disease. That the root cause of leprosy is not from the
action of the bacteria found but it is in the consequences of unclean
surroundings, poor health, malnutrition and then lowered resistance.
The linguistic data supplementing the survey responses revealed
aspects of the prevailing beliefs system surrounding food/diet of the
people and causes of Hansen's disease such as the eating of chicken with
squash, beef or pork; other causative factors are using the things of
someone sick with "it", or not having toilets so that chicken (finally
eaten by men) could eat human excreta, or skin ailments that have been
left untreated.
From the data gathered, it was shown that certain myths concerning the
cause of leprosy continue to thrive. The correct response, which is
Mycobacterium Leprae (a microorganism) , did not turn up even among the
patients of Tala Leprosarium whose greater knowledge of the disease was
anticipated.
C.
Modes of Transmission
In this survey, a question was asked to determine the respondents’
beliefs on how leprosy is passed on. Some choices were provided for in
the questionnaire e.g. through skin contact, inhaling "some things" which
are airborne, using things used by lepers and through skin contact with
open wounds, which the respondents could check if they agree. Then, they
were asked to add some other modes of transmission which they perceived to
be true as verified by their experiences. Among those mentioned are
"through flies and insects, through sweat or sputum and sexual contact".
Skin contact is the most frequently mentioned mode of transmission by the
Guimod residents but skin contact with open wounds is the most frequently
*It is safe to hypothesize that as the respondents’ educational
attainment rises, so do their knowledge and perception of existing
bacteria and/or germs as causative factors of the disease.
15
mentioned mode of transmission by the Tala residents. This implies that
the Tala residents may be better informed. Evidently, transmission
through flies and other insects is neither well-known nor accepted by most
of the respondents. Again, Kendall’s coefficient of concordance for the
six types of respondents was computed and indicated to be equal to .82
which is highly significant. This shows that the respondents agree more
or less upon the differnet modes of transmission. Even the rank
correlation coefficients computed for Guimod and Tala patients, for Guimod
and Tala CRIs and for patients, CRIs and KIs of all areas combined are all
significant, showing no significant difference in ranking.
While urban respondents (Tala) were more correct than the rural
respondents in specifying prolonged skin contact with open wounds as the
mode of transmission, the finding still indicated that both are not aware
what can be transmitted during the contact. It is definitely unknown
among the respondents that bacteria can enter through the open lesion and
that this is probably the cause of the disease.
Analysis of the language structure of the respondents indicated that
the people perceive the mode of transmission for leprosy as follows:
1.
Rubbing one's skin against one who has the disease.
In other
words, this meant that they knew that direct skin contact could
be contagious.
2.
Unsanitary conditions - the lack of proper waste disposal of both
humans and livestock could cause transmission of the disease
through food contamination.
The respondents’ answers indicated their ambivalence or lack of
knowledge regarding the concepts of causation and transmission. The two
are not clearly defined terminologies as far as language is concerned.
This lack of terminological differentiation between causation and
transmission validates Lendrum's (1952) concern that the "many
connotations of the disease have paralyzing effects on control measures".
A study on Filariasis by Lu et ar . contained the same findings.
Bacteria is an unknown concept because people do not see it in tangible
forms, hence, it cannot be cited as a possible cause of disease nor can it
be the villain in the spread of the disease.
D.
Prevention of Leprosy
Repondents’ concepts with regard to preventive measures against
leprosy show similarity with their responses on the treatment of this
disease.
It is established that patients cannot recognize early signs of
the disease and if they perceive some changes in their skin they usually
call it allergi, or "curad".
They have many terms to describe these skin
"curad" .
conditions.
The survey questionnaire included a question as to how the respondents
can avoid getting sick with leprosy. The choices provided in the
16
questionnaire are:
"To have the right amount of sleep, to eat the right
kind and amount of food, to have clean surroundings, not to mingle with
lepers, to obey medical advice regarding the disease, to avoid exposure to
tobacco-curing processes and to avoid activities which necessitate
exposure to soil or clay." Some respondents gave other answers like
avoiding lepers with open wounds, observing proper hygiene, avoiding much
stress or tension, avoiding worry and exhaustion and avoiding the use of a
sick person's belongings, avoiding liquor and alcoholic drinks, avoiding
smoking and avoiding activities that will expose them to sunlight or heat.
However, according to some, leprosy cannot be prevented. This
sentiment was expressed by one Tala patient who exclaimed:
"How can you
prevent it when it is the will of God? Why, even leprologists can't
establish its mode of transmission and now you are asking us if it can be
prevented?" Another said: "Nakakatawa naman, yang tanong mo. Eh, kung
alam ko lang na maiiwasas di sana hindi na ako nagkasakit."* (This is
roughly translated as: Your question is funny. If I knew that it could
be prevented then I don't think I would have got sick.)
In general, obeying medical advice is the most popularly known method
of preventing leprosy. This response showed that the patient is only
aware of the disease when its visible signs are already rampant all over
the body; when it is already too late to do anything to prevent its
debilitating effects and only more serious complications can be avoided if
they start "obeying medical advice". But at this stage, it may be quite
late. On the other hand, the Tala patients and CRIs ranked the right
amount of sleep and the right kind and amount of food as the most
popularly believed method of prevention. The coefficient of concordance
is computed to be at 0.66 for the six types of respondents, showing that
the different types of respondents do not differ significantly in their
knowledge with regard to prevention of leprosy. Their level of knowledge
regarding prevention of leprosy is as low as their knowledge of some
aspects of its etiology. This is significant also under the Chi-square
test showing concordance of opinions with regard to leprosy prevention.
However, some informants indicated
- -that they ask or consult the
following for advice when there is an "<
allergi"", or when they are
convinced that there is something more than the rashes;; their advice is
sought to prevent the advancement of the perceived skin ailment to
leprosy.
1.
Doctor. The informants used the terms doktors or mangangagas.
(The former is a loan word and the latter means roughly "one who
cures".)
2.
Herb doctor. The data revealed six terms for herb doctor, Four
are loan words and one a descriptive phrase. Three terms:
otellana, particular and mangalubria could not be translated
literally into Filipino or English but were used to indicate a
herb doctor.
*Taken from the field notes of C. Reyes, 21 April 1982.
17
Since they consider the disease a result of curse, voodoo, fate they
usually resort to seeking a local healer, e.g. as in the cases below:
Manang Maria
20 April 1982
"Manang Maria is a herbolario. Three of her children are
afflicted with leprosy... Started with Roberto, because the boy
kept going to the river for a swim right after playing in the
fields. He started to itch - it is called ’agbudo-budo’. Then
started to have ’supot-supot'. Then he went for consultation."
Manong Domingo
25 April 1982
’’Two of his children got the disease searching for ' mangangagas'
(local healer). Red spots on his two ears - when he was still a
young boy; red spots appeared when he took a bath in the river
with bamboo soaked in it. Applied oil of ’Good Friday’, the
spots disappeared,
Children’s disease not leprosy - it is the
work of ’manggamud*. They went to another barrio to escape. ’’
Marina Palapala, 21 April 1982
’’Skin disease not leprosy. Appeared when she gave birth to her
third child. Neighbours told her it was only ’curad’. Consulted
brother-in-law who treats. Applied oil of Good Friday but it
became worse. Went to skin clinic for consultation."
E.
The Correlation between Attitudes and Knowledge
To assess the existing attitudes and then to determine its correlation
with knowledge, the following questions were asked:
1.
What do you feel when you see a leper?
2.
If one of your relatives, friends or co-workers got sick
with leprosy, what would you feel about him?
3.
If one of the members of 'your family got sick with leprosy,
would you be ashamed to tell others?
For the convenience of the respondents, choices were provided in the
questionnaire like "scorn, loathing, feel sorry, annoyed", for the first
question above. The respondent could check any of these choices or add
any other reactions. He could give multiple answers. Each answer is
scored 1 point if it shows a positive attitude towards the leper and it is
scored -1 point if it shows negative attitude. For example, "scorn" is
scored -1 point while "feel sorry" is scored +1 point. The scores for
each of the three questions are added algebraically.
In addition, the following statements were given in the questionnaire:
18
I like to associate with lepers.
I feel that lepers face a bleak future.
I don't mind sitting side by side with a leper in a public conveyance.
I feel that lepers should be treated with more compassion.
I believe that leprosy is an incurable disease.
I cannot imagine myself working with a leper.
I believe that leprosy can be prevented.
I can really get in a panic when a leper approaches me.
I believe that lepers should be kept in an institution.
Leprosy can be cured.
The respondents were asked whether they disagree or strongly disagree,
agree or strongly agree with each of the above statements. The responses
were given equivalent points. For example, for the first statement,
"strongly disagree" is equivalent to -2 points; "disagree" -1 point:
"agree" 1 point; "strongly agree" 2 points. For the second statement,
scoring is the other way round: "strongly disagree" is equivalent to 2
points; "disagree" 1 point; "agree" -1 point; "strongly agree" -2
points. The equivalent points for all the 10 statements are added
algebraically. The total score for these 10 statements and the above
mentioned questions are added together to form the attitude scores(Y).
Likewise the knowledge scores were computed, The knowledge score is based
on the responses to the following questions:
1.
2.
3.
4.
5.
6.
Are there some beliefs about leprosy that you personally believe
in?
Do you know how leprosy looks?
What can be the causes of leprosy?
Is leprosy contagious: If yes, how?
Can you avoid getting sick with leprosy? If yes, how?
Who is easily susceptible to leprosy?
There were choices given and the respondent could answer by checking
one or more of the choices or give his own answer if his answer is
different from any of the choices. Correct choices or answers are
equivalent to 1 point each, but wrong choices or answers are equivalent to
-1 point each. For example, in the first question above, if the answer
is, "this is a curse", then the respondent gets a score of -1 for that
answer. If one’s answer for the third question is "bacteria", then he
gets 1 point for that answer. The total number of points for all the six
questions are added algebraically to get the knowledge score (X) of a
respondent.
A test of normality was administered to each of the resulting
distributions of knowledge scores and attitudes scored for Guimod and Tala
respondents, separately, This to determine whether the coefficient of
linear correlation is a valid instrument in determining the independence
of the knowledge and attitude
’ t scores.
Since the result shows normality of the distribution of knowledge
scores (X) and attitude scores (Y) at 5% significance level, Pearson’s
coefficient of linear correlation r between X and Y was computed. For
19
the Tala respondents, r = -.08 which is not considered significant based
on the t-test. Therefore, the knowledge and attitude are not correlated.
For the Guimod respondents, r = -.20 which is considered significant at
5% significance level. This implies that knowledge and attitude are
interrelated. However, at 1% significance level, this coefficient of
linear correlation is not significant, implying that knowledge and
attitude are independent of each other. For all respondents, Guimod and
Tala respondents combined, r = -.15, which is considered significant at 5%
significance level but not significant at 1% level.
Since the conclusion differs for different significance levels,
Spearmen’s rank correlation coefficient rR was computed also. For the
Tala respondents, rR = -0.046, which is not significant based on the
t-test. Thus, knowledge and attitude are independent of each other. For
the Guimod respondents, rR = -.218, which is considered significant at
5% level but insignificant at 1% level. For all respondents combined,
rR = .17, which is considered significant at both 5% and 1% significance
levels. Thus the conclusions do not vary very much if the rank
correlation coefficient was used instead of Pearson's r. Apart from the
attitudinal statements, the linguistic analysis also showed the level of
reactions and attitudes among those studied. Again, both types of data
demonstrated almost similar perceptual bias in relation to the disease.
In many cases their skin problems were considered not disablingj they
were not aware of the seriousness of the disease.
Several informants did not recognize the sickness as leprosy until it was
positively identified. For many of them, they like to think of it as skin
ailments, for which the Ilocanos have, in fact, many terms.
20
Terms for Skin Ailments:*
Ilocano
Filipino
English
Kukutel
Ketong
leprosy
supot-supot
tagulabay
rash
kurad
buni
ring worm
kamuro
taghiyawat
pimples
kamanaw
anan
tina flava
gaddel
galis
itch
abbudobudo
pantal
rash
kating
bakukang
yaws
gudgud
galis aso
scabies
taramiding
labba-it
*These terms will be useful in packaging health education materials.
The data further showed that the respondent Hansenites were often
hesitant, evasive or indirect. This indicated their caution in making
statements or comments about their state, hence consciously or
unconsciously revealing their anxiety and feeling of insecurity.
Some of the Hansenites expressed the belief that their sickness was
curable and did not despair of their state but expressed anxiety over
their predicament. Some of the informants expressed the belief that those
afflicted with the disease should be segregated to avoid its spread.
From the comments of the relatives of Hansenites it could be gathered
that they expressed concern and tolerance towards those suffering from the
disease. At the same time the data showed the relatives as keeping a
distance, indicative of caution and uncertainty.
21
In general, the informants who were not related to Hansenites showed
very little knowledge of the disease itself or related aspects of it.
Nonetheless, they expressed sympathy for those afflicted with leprosy.
III. STRESS AND COPING PATTERNS AMONG HANSENITES
The psychological aspect of the project sought to discover the types
of psychological stress and coping reactions among Hansenites and their
families. That leprosy is a dreaded and stigmatized disease appears to be
a well-known fact and it is therefore expected that a Hansenite's life
would be marked by stress. Apart from making this general observation,
however, there has been no attempt to systematically study the exact
nature of the stresses experienced by Hansenites. Earlier studies on
psychological stress pointed to the amount of stress experienced by
Hansenites prior to and after institutionalization. Thus, patients
experienced the greatest amount of stress, first, upon learning that they
had the disease and second, when they were released as outpatients.
These findings suggest the time during which psychotherapeutic
intervention could possibly take place.
The present study, on the other hand, concentrates on outpatient
Hansenites who have never experienced institutionalization.
It is
therefore geared towards understanding their phenomenology within the
context of disease-related stresses.
Immediate family members who are
involved in caring for the patient are likewise included in the study in
order to place the patients’ stress perceptions in proper context. It
appears just as important to understand their stress perceptions and
coping patterns because they provide the daily social interaction open to
the Hansenites and to some extent share the stress of a chronic and
stigmatized disease. Relatives also appeared to be a good comparison
group as they share with the patients similar social and physical
environments.
This report summarizes data from twenty patients (10 males, 10
females) and eighteen non-patients (8 males, 10 females) who are all
registered with the Vigan Skin Clinic in Vigan, Ilocos Sur. The females
have a mean age of 35 and the males of 33.
The subjects were chosen at random based on their being adults and
being physicially able to see and talk normally, Introductions were made
by personnel from the Vigan Skin Clinic, Prior to the interviews, rapport
was establshed by the interviewer who spoke the dialect and tried to
minimize the physical distance between herself and the patients. The
Philippine Thematic Apperception Test was then administered after which
the Rorschach was given. Finally, an in-depth interview including dreams,
best and worst experiences, knowledge, feelings, attitudes and coping
reactions was undertaken. Ending the session involved conversing with
them casually and maintaining a friendly atmosphere.
The data generated from the interviews are very extensive and
encouraging, suggesting various types of analysis. Case studies as well
oocuwe-..
Al
22
as group profiles could be done but for this report, a card-by-card
content analysis is made for the projective tests an<i frequency counts and
descriptions will be made for the rest of the data.
Table 1.
CARD NO
Dominant Themes of Hansenites on the Philippine
Thematic Apperception Test (PTAT)
THEME
1
A girl ashamed about her disease
A girl cooking/doing household chores
3
A sick man helped by others: or through God's
mercy
6FM
Two men trying to avoid a girl with leprosy
Leprosy patients thinking about their disease
7
People praying attending mass
Praying for God's help over illness (Leprosy)
10
An old couple with grandchild
Sick people (leprosy patients)
The above thematic analysis indicated that the Hansenites dwell on
their disease repeatedly and generally in a high negative manner. Their
feelings of shame and worry are easily projected onto the characters in
their stories. These came 'very naturally with minimal prodding and for
some, it was a cathartic experience as they went from the story they
created to their own personal lives.
The characterization of the heroes in the stories are uniform for both
males and females: sick people, mostly with leprosy, who are c._
overcome by
feelings of frustration, unhappiness, worry, shame and rejection. The
dominant needs expressed are those of succorance and harm-avoidance and
the positive notes in these protocols appear to be in the story-endings.
Although negative feelings and thoughts dominate the stories, they
generally end with some hope for a better life.
23
The tone of negative feeling is repeated in the dreams, especially
those of the male patients who reported dreams of falling all the way down
a ravine, being chased by a ghost, being bitten by a snake, being unable
to move because a monster was sitting on their stomach, as well as two men
chasing a patient and killing him. The positively toned dreams are almost
magical and wish-fulfilling in nature:
for instance, dreaming of being
completely healed just by wiping a potion once, all over the body. The
females have more positive dreams but those who have bad dreams report the
same type as the men’s - falling, being bitten and seeing something
frightening. The positive dreams include seeing and talking to God thus
making their disease more bearable and being informed by others about a
doctor who can really heal leprosy. These positively-toned dreams suggest
simultaneously the despair and desire to be healed: only a magical
process or God's intervention can heal them of their leprosy.
From the content analysis of the subject’s responses to the Rorschach
the following inferences may be made: for both males and females, there
is an expression of generalized negative attitude, a passive-receptive
orientation, an indication of immature, inadequately developed
personality, fear of bodily harm, a real concern about their bodies and
attitudes of guardedness and evasion. The findings from the Philippine
Thematic Apperception Test and dreams are thus further reinforced by the
foregoing content analysis.
Part of the interview involved questions on their happiest and worst
experiences. Five of the patients claim not having any happy experience
at all (Awan ti amok nga pinagragsakak. I don't know of anything that
made me happy. I was never happy.), while others point to their childhood
when they did not yet have leprosy and to their present state. Their
financially deprived condition can also be seen in their reports of
happiness when a little money or food comes their way.
(Naragsakak, basta
ada masidak, uray no anya dita. I am happy as long as I have something to
eat, anything at all.). The need for affiliation, on the other hand,
determines their happiness: recalling walks with a boyfriend, reminiscing
about dancing parties, the birth of the first son and Christmas Day.
Worst experiences are mostly associated with their illness. Thus they
report: getting sick with leprosy or feeling that their disease was
getting worse, people avoiding them because of disease, feelings of shame,
worry and sorrow about their disease and people teasing them about
leprosy. Be it a projective or direct injury, the in-depth interview
yielded data descriptive of the depressing effects of the chronic nature
of Hansen's disease.
In describing their initial reactions to the
discovery that they had leprosy, both males and females reported being
worried, afraid, depressed, sad and ashamed. They perceived their
families as being worried and depressed too but that their neighbours
feared them and some showed loathing for them. Their first coping
behaviour involved going to the "arbularyo" who made them drink some
potion, healed them with saliva and betel nut or who rubbed them with
various kinds of leaves. At the same time, they isolated themselves from
other people. Only when their condition seemed to get worse did they
attempt to go to the Skin Clinic.
24
It seems clear from the foregoing analysis that there is a need to
provide therapeutic counselling sessions for Hansenites.
Counselling and Stress Management among Hansenites
The results of the present study indicate the extent and intensity of
stress experienced by Hansenites and the basic fact that people involved
in their care (relatives and skin clinic personnel) have to be sensitive
about the psychological impact of the disease on the patients. Skin
Clinic personnel and relatives of the Hansenites can be a source of
support as well as of stress for the patients. Thus, although the target
beneficiaries for this proposed intervention are the Hansenites
themselves, the strategy basically involves the education and training of
skin clinic personnel and patient's relatives on the psychotherapeutic
handling of the Hansenites.
That psychological stress and disease are closely associated is no
longer a matter of debate. Research now links stress with disease as an
antecedent, consequent or concurrent factor. For instance,
Rahe et al.(1964)° have evolved a scale which allows some degree of
measuring the impact of life events on the individual and their work
indicates that as life events become more stressful the frequency of
illness also increases. In this context, therefore, the amount of stress
present in the lives of Hansenites which the present study documents can
not be overemphasized. Although no specific studies have been made on
stress as an antecedent of Hansen’s disease, it can be hypothesized from
the present data that, as an accompanying factor, it could aggravate the
physiological condition of the Hansenite.
IV.
RECOMMENDATIONS
This section of this paper is the most important because it contains
the recommendations for improving the leprosy control service in the
Philippines to which serious consideration should be given.
1.
Suggested Strategy for Patients
1.1 Relaxation training. Jacobson's technique should be
utilized. Each session should last from 15 to 20 mintues,
focusing on relaxation training.
1.2 Cognitive behaviour medication. The most stressful
experience of the subject should be determined and a) an
explanation of how conditions are aroused by one's thoughts
will be made; b) practice in controlling arousal by means
of relaxation and breathing should be introduced; and c)
practice in rehearsing self-instructions to cope with stress
situation should be encouraged.
25
1.3
Self-management and self-control.
1.4 Group discussions and group conselling on common
problems (patients are met in homogenous groups, e.g. males
or females of a particular age group).
2.
Suggested Strategy for Clinic Personnel and Family Members
2.1 Sensitivity training designed to make personnel more
sensitive about the impact of their knowledge and behaviour.
2.2 Training sessions on the impact of preparatory
communications in reducing fear and anxiety. Frankness,
honesty and genuine concern for the patient will be
emphsized.
2.3 A three-month intensive training and supervised
practicum on the technique outlined for patients.
3.
Suggested Strategy in Packaging Information on Leprosy
3.1 Packaging information about leprosy in Ilocano should
use the very terms and linguistic forms Ilocanos are
familiar with. Posters should not be in English.
3.2
Make targets of information aware of their state.
3.3 The language used in educational material should avoid
hurting the sensibilities of those whom the message should
reach in order to avoid negative reactions. For example,
supernatural causes of leprosy may be included among
legitimate ones to make those who believe in curses or
voodoo relate to the educational material prepared for
dissemination.
3.4 Significant dialectal differences for terms and for
folk beliefs should be noted and included in the material to
be disseminated.
3.5 The material gathered in the study could be used for
training personnel involved in the prevention and control
programs.
3.6 The results of the study should be incorporated and
used to modify and elicit new material for a more extended
study on leprosy in the Ilocos.
26
NOTES
1.
Guimod is the study site while Tala serves as the control
site. There is a need for a control site so as to have a
basis for comparison of the study site. Tala Leprosarium is
in Metro Manila, the National Capital Region of the
Philippines (or simply, Region IV). It is an hour’s drive
from Manila, on average. Tala Leprosarium is located in
Tala, one of the barangays in the municipality of
Novaliches, comprising the City of Caloocan. The patients
in that Leprosarium usually come from Luzon, most
particularly from Central Luzon and Metro Manila since it is
very accessible and very near the place. Only a few come
from the Visayas and Mindanao.
2.
There are 35 patients all in all but two are also CRI aside
from bring patients because one is the sister and the other
the husband of another leper (in both cases, the CRI/P got
sick later than the patient corresponding to them). In one
questionnaire, most questions were not answered because the
7-year old child could not comprehend the questions. From a
quota of 38, we lack 3 but if we cancel that of the boy, we
lack 4. There are 30 critical informants technically but
only 21 questionnaires for single CRIs were answered. In 4
cases, the CRI is answerable for 2 patients each. In one
case a CRI is answerable for 2 patients each. Ine one case
a CRI is anserable for 4 patients - her sons (3) and a
sister-in-law who is living with her. We lack 8 CRIs.
There are 38 KIs and with a quota of 36 there is an excess
of 2.
3.
These 41 patients were derived (or taken) from the list
supplied by the Central Administration of Tala. They are
active cases and their characteristics were matched with the
34 patients from Guimod.
4.
Taken from the field diary of Ms. Carmina Reyes dated 30
April 1982, page 12. Ms. Reyes was the field interviewer in
Tala, Caloocan and Guimod, Bantay, Ilocos Sur for this
research project.
5.
Soldevilla, J.R., "Maximizing Resources of Assisting
Agencies in Leprosy Problems in Leprosy Case Assistance",
The Philippine Journal of Dermatology and Leprosy, Vol.
VI-IX (January 1974-June 1979), pp.78-83.
6.
Kato, L. , "Trends in Leprosy Research. Cultivation of the
Neglected priority", Leprosy Scientific Memoranda, Leonard
Wood Memorial (American Leprosy Foundation), L-1151
(September 1982), p.2.
27
7.
Tranquilino Fajardo, Jr., "Immunology Therapy of Leprosy",
The Philippine Journal of Dermatology and Leprosy, Vol.
VI-IX (1974-1979), p.38.
~
8.
R.S. Guinto, "Epidemiology of Leprosy, Current Views,
Concepts and Problems", p.26.
9.
Rodriguez, J.N., "Problems in the Cultivation of M. Leprae",
The Philippine Journal of Dermatology and Leprosy, Vol.
VI-IX (January 1974-June 1979), pp.20-3.
10.
Binford, C.H.,, "Predilection of M. Leprae for Peripheral
Nerves", Leprosy Brief Transactions , Vol. 13 (1962).
11.
Lara, C.B., "Leprosy Incidence and Age or Duration of
Exposure at Onset in Unvaccinaced and Vaccinated Contact
Children", The Philippine Journal of Leprosy, Vol. 2, No. 2
(July-December 1968), pp.13-14.
12.
S. R. Lang, "Leprosy in Auckland", New Zealand Medical
Journal, 92 (8 October 1980), p.272. This has been
validated by our observations in the study sites.
In fact,
the research team is beginning to suspect that the process
of contamination is greatly enhanced by the very close
contacts of family members. This system explains why there
are many cases of all family members being sick at the same
time. That contamination of things used by
bv lepers is a very
easy means of disseminating the M, leprae should be
emphasized as well in health education. What happens is
that only "prolonged skin to skin contact" is the most
accepted and stressed mode of transmission by present health
educators and leprologists in the country.
13.
Muir, E. and Sir L. Rogers, Leprosy, 3rd ed., Baltimore,
Williams and Wilkins Co., 1946.
14.
Marchoux, E. "Un cas d'inoculation accidentalle du bacille
de Hansen en pays nonleprius:", International Journal of
Leprosy, Vol. 2 (1934), pp.1-6.
15.
Olsen, R.S. and R.J. Porritt, "The Simultaneous Cases of
Leprosy Developing in Tattoes", American Jounal of
Pathology, Vol. 23 (1947), pp.805-17.
16.
Lara, C.B. and J.O. Nolasco, "Self-healing or Abortive and
Residual Forms of Childhood Leprosy and their Probable
Significance ", International Journal of Leprosy, Vol. 24
"
(1956), pp.245-63.
17.
Dungal, N., "Is Leprosy Transmitted by Insects?", Leprosy
Review, Vol. 31 (1960), pp.25-34.
28
18.
Munos Rivas, G., "Algunassssss Observaciones Relacionadas
con las pulgas y la transmission de le lepra", Rev. de la
Fac. de Medicina Bogota, Vol. 10 (1942), p.635.
19.
Munos Rivas, G., "La transmission de la lepra", Bogata, Vol.
8 (1958),
20.
F.L. Sahagun, "Physical Rehabilitation of Leprosy", The
Philippine Journal of Dermatology and Leprosy, Vol. VI-IX
(1974-1979), p.61.
21.
Reyes, T., "Nerve Conduction Velocity Studies in Filipinos
with Leprosy", The Philippine Journal of Dermatology and
Leprosy, Vol. VI-IX (January 1974-June 1979), pp.46-59.
22.
See Note 10.
23.
S.R. Lang, "Leprosy in Auckland", op. cit., p.272.
24.
H. Johanse, "Prospects for Leprosy Control in the
Eighties”, The Nursing Journal of India, 71, 9 (1980),
p.252.
25.
P.R. Tantiangco, "Problems in Chemotherapy and
Recommendations", The Philippine Journal of Dermatology and
Leprosy, op. cit., p.35.
26.
G.H. Ree, "Psychosomatics of Leprosy", PNG Medical Journal
(1980), p.51.
27.
P. Fasal and G.L. Fite, "The Several Faces of Leprosy",
International Journal of Leprosy, 47, 2 (1979) Suppl.
Abstract VI, 212, pp.401-402. In fact, the present study
seeks to understand the social face of leprosy.
28.
G.L. Fite, "Leprosy, Society and Hansen’s Disease",
International Journal of Leprosy, 24, 4 (1956), p.461.
29.
Alexander, J.B. and R. Moulun, "Psychological Stress in
Leprosy Patients", The Philippine Journal of Leprosy, Vol.
IV, No. 2 (July-December 1969), pp.1-10.
30.
G.A. Gonzales, "Psycho-Social Aspect of the Rehabilitation
of Hansenites", The Philippine Journal of Dermatology and
Leprosy, op. cit., p.75.
31.
M. Jesudasan et al., "Health Education and Leprosy", Leprosy
Review, 51 (1980), p.167.
29
32.
F. Lendrum, "The Name Leprosy", American Journal of Tropical
Medicine and Hygiene, 1, 6 (1952), p.999. The present study
under the supervision of Dr C.M. Paz of the Department of
Linguistics and Asian Languages seeks to document the
importance of language analysis in understanding the
illness. Hopefully, she might come out with certain
recommendations regarding health education materials.
33.
Aida G. Lu et al., "Filariasis: A Study of Knowledge,
Attitudes and Practices of the People of Sorsagon", Social
and Economic Research Project Reports, No. 1 (1988)
UNDP/World Bank/WHO Special Programme for Research and
Training in Tropical Diseases (TDR).
34.
Rahe, R.H., M. Meyer, M. Smith, G. Kjaer and T.H. Holmes,
"Social Stress and Illness Onset", Journal of Psychosomatic
Research, Vol. 8 (1964).
30
APPENDIX I
LIST OF BARANGAYS OF BANTAY
ILOCOS SUR
B-012903 - Code for Bantay, Ilocos Sur
CODE BARANGAY
POPULATION
(As of July 1982)
001
002
003
004
005
006
007
008
009
010
Oil
012
013
014
015
016
017
018
019
020
021
022
023
024
025
026
027
028
029
030
031
032
033
034
Aggay
An-annam
Balalang
Banaoang
Barangay 1
Barangay 2
Barangay 3
Barangay 4
Barangay 5
Barangay 6
Barangay
Buguig
Cabalangan
Cabaroan
Cabusligan
Capangdanan
Guimod
Lingsat
Malingeb
Mira
Naguidayan
Ora
Paing
Puspus
Quimaraya
Sagneb
Sagpat
Sallacong
San Isidro
San Julian
Sinabaan
Taguipuro
Taleb
Tay-ac
510
1,300
2,073
368
480
1,210
513
848
480
400
2,940
390
300
389
490
420
500
720886
388
347
1,010
1,288
388
386
125
297
198
560
656
326
530
1,870
1,865
31
APPENDIX II
Prevalence Rate as of 1980 of the Different
Barangays of Bantay, Ilocos Sur
: Population : Active Cases : PR/1000 pop.
1. Aggay
2. An-Annam
3. Balaeng
4. Banaoang
5. Boquig
6. Bulag
7. Cabalanggan
8. Cabaroan
9. Cabusligan
10. Capangdana
11. Guimod
12. Lingsat
13. Malingueb
14. Mira
15. Naguidaya
16. Ora
17. Paing
18. Poblacion
(Zone I-VI)
19. Puspus
20. Quimarayan
21. Sagpat
22. Sagneb
23. Sallacong
24. San Isidro
25. San Julian
26. Sinabaan
27. Taleb
28. Taguiporo
29. Tay-ac
Total:
683
753
1976
269
382
1817
325
376
440
440
744
682
862
192
291
1161
1253
3720
1
3
9
1
2
13
5
1
0
3
32
12
6
2
0
1
11
24
1.46
3.99
4.55
3.72
5.24
7.15
15.38
2.66
0
6.83
43.01
17.60
6.96
10.42
0
0.86
8.78
6.45
368
378
350
180
171
468
565
306
1077
462
1683
0
3
1
2
0
1
10
0
5
2
24
0
7.94
2.86
11.11
0
2.14
17.70
0
4.64
4.33
14.26
174
22372
7.78
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