Acta psychiatr. scand.

1983:68:186-201

Key words: Social burden; mental illness;

developing countries.

The burden of mental illness on the family

Results of observations in four developing countries

A report from the WHO Collaborative Study on Strategies for

Extending Mental Health Care
R. Giel', M. V. de Arango2, A. Hafeiz Babi-
kir3, M. Bonifacio4, C. E. Climenp, T. W.
Harding6, H. H. A. Ibrahim7. L. Ladrido-lgna-
cioa, R. Srinivasa Murthy9 and N. N. Wig'"

ABSTRACT - As part of the WHO Collaborative Study on Strategies

for Extending Mental Health Care 259 families in four developing
countries (Colombia, India, Sudan and the Philippines) were screened
with regard to the social burden caused by mental illness of one of
its members. Levels of subsistence, previous illness, financial burden,
personal relations and social acceptance were studied. The social
burden was greatest in the urban areas.

Received March 11, 2983; accepted for publication April 16, 1983

B. is a 50-year-old locksmith from the maintain a satisfactory standard of life.

village of Mankian in Haryana State, In-
dia. Until 10 years ago he used to be the
main provider for his family, including
a wife, two sons and three daughters.
From his childhood up to the present he
never left his village. He was the true
head of his household, always busy and
in charge of family matters, and able to
Some 10 years ago he became suddenly
psychotic, full of suspicions, aggressive
and abusive towards his family and to
visitors. He was no longer able to con-
centrate on his work. Because supernatural
forces were thought to be involved, B.
was taken to various traditional healers,
unfortunately without avail and at con-

'Professor of Social Psychiatry, University of Groningen, Groningen, The Netherlands; 2Pro-

fessor of Psychiatry. Universidad del Valle, Cali, Colombia; 3 L e c t ~ r ein
r Psychiatry, Univer-
sity of Khartoum, Sudan; 'Professor of Sociology, College of Arts and Sciences, University
of the Philippines. Manila, Philippines; 5 P r ~ f eof~ Psychiatry,
~ ~ r Universidad del Valle, Cali,
Colombia; %urrently with the Institute of Legal Medicine, University of Geneva, Switzer-
land: 'Prior to his death Professor of Psychiatry, University of Khartoum, Khartoum, Sudan;
8Department of Psychiatry, University of the Philippines System, Manila, Philippines; 9Cur-
rently Associate Professor of Psychiatry, Nat. Inst. of Mental Health and Neuro Sciences,
Bangalore, India; '"Professor of Psychiatry, All India Institute of Medical Sciences, New
Delhi. India.
 BURDEN OF MENTAL ILLNESS ON FAMILY
siderable expense. Since his prospective
clients feared his company, commissions
stopped coming his way. Later he was
taken to the hospital in Patiala, 50 km
away. The family had to take a loan from
a lender to pay for the weekly visits. They
became socially isolated, the sons had to
interrupt their studies, and quite often
there was no food on the table. Relation-
ships within the family and with neigh-
bours were strained. More recently, due
to the village mental health programme,
B. has been taking psychotropic drugs
regularly. His behaviour has improved so
much that the confidence of the villagers
and their acceptance of B. and his family
have been restored. One son has not yet
been able to resume his studies because
he assists his father now that the villagers
are again bringing their tools for repair.
The contention of the WHO Expert
Committee on Mental Health (1) that
seriously incapacitating mental disorders,
such as the above, are likely t o affect at
least 1 % of any population at any one
time and at least 10 % at some time in
their life, led to the WHO Collaborative
Study on Strategies for Extending Mental
Health Care (2). The development of stra-
tegies includes establishing to whom men-
tal health care should be extended and
to which problems it should be applied.
Another WHO Collaborative Study, on
the assessment and reduction of psychiat-
ric disability ( 3 ) , focusses in detail on the
incapacities affecting people such as B.
In that study psychiatric disorder is
viewed from various perspectives:
a) patient’s verbatim report describing
his pathological experience, i.e. his psy-
chopathology;
b) his observable behaviour while com-
municating with the interviewer, i.e. his
psychological impairments; and
c) his performance in various social
roles: as a member of the household,
187
marital, parental, sexual, occupational, etc.
Regarding a reduction of the previously
mentioned serious incapacity in 1 % of
the population, each of the above would
have to be considered in mental health
care programmes. Still, they only concern
the patient suffering from mental disorder,
failing to include any incapacitating ef-
fect on the family or the social group to
which the patient belongs. Assessing the
social burden of mental illness on others
is important for the following reasons:
1. In a particular society one and the
same disease may be more incapacitating
to one type of family or social group
than t o another.
2. One and the same disease may af-
fect rather similar social groups quite dif-
ferently in various societies.
3. One type of disease may under simi-
lar circumstances be more harmful than
another to a patient’s social group.
4. In such cases where curing psycho-
pathology of psychological impairment
proves impossible, we might still decide
to select the disease as a priority con-
dition for a mental health care program-
me, because we are able to neutralize its
incapacitating effect on the patient’s social
group.
In Western sociey, much attention is
paid to the rehabilitation and community
care of mentally disordered and disabled
people (4, 5). Community care is de-
scribed and evaluated (6, 7, 8). In 1962,
Sainsbury & Grad (9) already indicated
that community care programmes do have
a beneficial effect on the amount of time
spent in hospital, but also that they leave
the patient’s family with a considerable
social burden. More recent studies tried
to measure this burden. Creer et al. (10)
assessed in a sample of mentally disturbed
people in a London borough with various
day and residential facilities, the role of
relatives in assisting with self-care and
188 R. GlEL ET AL.
coping with the patient’s difficult behav-
iour. Overall, 40 % of patients had to
receive some attention, and 33 % much
attention because of socially difficult be-
haviour. Sixty per cent of the relatives
were content with the extent of their re-
sponsibilities. Their subjective burden was
strongly related to the amount of support
they had to give to the patient. The types
of professional help required by the rela-
tives were practical assistance, involve-
ment in plans for patient care, an oppor-
tunity to discuss management of difficult
behaviour, emotional support, a break or
holiday for the relatives, etc. The socio-
economic burden on the family was not
assessed in this study. Dupont (11) studied
39 families with a severely mentally re-
tarded child, in the municipality of Aarhus
(Denmark). The families devoted, on aver-
age, more than 7 h 7 days per week to
the care, supervision, occupation, and
training of these children. In 80 % of the
cases the parent’s sleep was disturbed by
the child, and 87 % of the families were
limited in their cultural activities. In her
review of some recent studies Dupont
showed that in spite of a detailed network
of community care there is still a need
to stress that a heavy burden is imposed
on the families of the severely handi-
capped.
The situation regarding the developing
world is vastly different. Unless the fami-
ly decides to abandon its mentally dis-
turbed member, it has no alternative ex-
cept to cany the full burden itself with-
out access to community mental health
facilities, except for occasional visits to
traditional healers or remote mental hos-
pitals. Although various authors have re-
ported on social dysfunction (12), and
traditional ways of managing mentally
disordered people (13, 14, 15, 16, 17),
information on the burden of mentally
disordered people on the community is
lacking. Perhaps it is assumed too readily
that the extended family system still pre-
vailing in many areas of the third world,
suffices to maintain mentally handicapped
people without undue strain on its re-
sources. In the WHO Collaborative Study
on Strategies for Extending Mental Health
Care, we tried to assess the social burden
of mental illness with a simple survey
schedule. (The schedule with instructions
can be obtained from R. Giel, Dept. of
Psychiatry, University of Groningen, The
Netherlands.) The schedule was prepared
and its application discussed during the
annual meetings of representatives of the
research teams. It was not possible to
validate it locally against other measure-
ments of social burden because of limited
research resources, but it did show high
correlation in each area with social dis-
ability measured in the patients. Trans-
cultural rehability studies were not con-
sidered useful for obvious reasons. What
constitutes a heavy burden in one social
context is not necessarily so in a widely
different one (see also Table 1).
This paper reports on the modest re-
sults obtained with the schedule in the
first four pilot study areas participating
in the project.
The four study areas
Some characteristics of the four study
areas are given in Table 1. A brief de-
scription of each follows below.
Union de Vivienda Popular is an urban
slum area on the outskirts of Cali, Co-
lombia, with a highly mobile population.
People migrating from the countryside
into town tend to settle first in Union, and
later move on once they have established
themselves in Cali. The vast majority are
 BURDEN OF MENTAL ILLNESS ON FAMILY 189

Table 1
Socio-demographic characteristics of four pilot study areas
Socio-demographic
characteristics Union Raipur Shagara Sampaloc

General character urban slum rural rural urban

Population density/
sq. km 23,400 162 209 103,271
Birth rat&
lo00 population 28 33.2 49 30
Mortality ratd
lo00 population 9.8 14.1 24 7
Roomddwelling
(estimated average) 2.2 2.4 3 2.4
Personddwelling
(estimated average) 6.7 6.3 5 8.4
Persondroom
(estimated average) 3.0 2.1 1.7 5
Adult literacy rate
(estimated) 60 % 23 % 40 % 90 %
Major religion Roman Hindu Muslim Roman
Catholic Catholic
Economic activities - home - farming - farming - sales
industry - labourers workers
- small - traders - civil
shops service
- factory - factory
workers workers
Disposable weekly
incomdperson: US$ 2.1 1.2 4.4 ?

Roman Catholic, but the Church exerts
little leadership in the area, nor does any-
one else. From many families the father
is absent. People tend to be wary of each
other and there is considerable violence
in the area. The inhabitants do not really
participate in community life. During the
psychiatric survey it was not possible to
identify key-informants who were pre-
pared to discuss and locate mentally dis-
turbed people in the area.
Raipur Rani Block is a rural area in-
cluding several villages, in Haryana State,
Northern India. The villagers, who live
in extended families, identify themselves
strongly with the community to which
they belong. The elected village chief is
the accepted leader of the community,
and is quite knowledgeable about mental
disturbance amongst his people. Once the
chiefs understood the purpose of our sur-
vey they were quite prepared to act as
key-informants. The stable social climate
was evident from the fact that of the
severely mentally disturbed people found
in the villages, only very few had dis-
appeared over a period of 2 years. The
majority were successfully treated in the
community.
190 R. GlEL ET AL.
Shagara Jebel Awlia is a rapidly develop-
ing rural area a brief bus-ride away from
Khartoum. Closer to Khartoum live many
people who migrated there from other
parts of the Sudan. Further away, the
population is more indigenous. Many
people commute daily into town, where
they hold jobs and go for more extensive
medical care, even though they have gar-
dens and some cattle in Shagara itself as
well as local health facilities. The village
chief, sometimes a health worker, exer-
cises leadership and feels responsible for
the welfare of his people. The men in
these positions are quite willing to act as
key-informants. In fact, they kept sending
patients to the psychiatric services in
Khartoum after the survey had been com-
pleted. They show much concern for their
disabled relatives. The people’s pattern of
life is dominated by the Quran. Life in the
extended family has not been much af-
fected by the proximity of and dependence
on Khartoum. Perhaps it is closer to the
truth to state that the pattern of life in
urban Khartoum is not so different from
that in the countryside.
Sampaloc is a long established urban
quarter of metropolitan Manila. Its people
have been urban dwellers for several gen-
erations. It has by far the highest literacy
rate of the four study areas, and counts
many white collar workers. Two aspects
of social organisation can be distin-
guished. A formal socio-political structure
is imposed from above, with an appointed
captain and group of councillors carrying
various social responsibilities for clusters
of families (the “pooks”) who are orga-
nized into a larger unit - the barangay -
of which the captain is the leader. Yet,
spiritually, people depend very strongiy
on sectarian experience within or .on the
fringe of the Roman Catholic Church, but
always with the Blessed Virgin Mary as
the protector of a person’s health, suc-
cess and happiness. In this urban quarter,
without clear extended reciprocal com-
munal ties between people, attempts to
find key-informants who were willing to
identify and locate mentally disturbed
people, failed. All areas have traditional
healers of various kinds.
Method
Sampling. In each area a complete list of
all health facilities was drawn up, together
with information on the average number
of consultations by adults each week in
each facility. The minimum number of
adults to be screened was fixed at 300 per
50,000 inhabitants. A screening quota was
then established for each health facility
in proportion to the attendance rates.
Screening was then carried out at each
facility in turn. Consecutive attenders
aged 16 or over were screened on succes-
sive days until the quota was reached. Ex-
cluded from screening were:
i) patients who were so seriously ill
(e.g. in coma) or required such urgent
medical care that it would be unreason-
able to administer the research question-
naires;
ii) patients who refused to take part;
iii) patients who had already attended
once during the exercise and had therefore
been screened. For each patient screened,
basic identifying data were obtained.
The screening process was carried out
completely independently of the usual
consultatiodtreatment process.
A Self Reporting Questionnaire (SRQ)
with 24 items was used. The first 20 items
were designed to detect non-psychotic dis-
orders. They were selected by a con-
sensual process, comparing items in four
instruments used in a variety of cultural
settings: the Patient Self-report Symptom
 BURDEN OF MENTAL ILLNESS ON FAMILY
Form (PASSR), an instrument developed
and tested in Cali, Colombia (18); the
PGI Health Questionnaire N2 developed
by Wig and his colleagues in Chandigarh
after they found the Cornell Medical In-
dex too inappropriate to the Indian setting
(19); the General Health Questionnaire
(GHQ) used originally by Goldberg in
England but subsequently validated in the
United States (20), Jamaica (21), and
many other settings; the “symptom” items
on the shortened version of the Present
State Examination (PSE) (22). This com-
parison produced a list of 32 items which
were either identical or very similar in
meaning. From these, 20 items were se-
lected by agreement between the chief in-
vestigators in the first-phase study area
teams on the basis of ease of translation
and cultural relevance. The four addi-
tional items, designed to detect psychotic
conditions, were based on the items in
Foulds Symptom Sign Inventory (23)
which have been shown to be the most
effective in detecting psychotic illness.
Since most attending patients were il-
literate, the SRQ items were read to the
patient by research assistants. In most in-
stances the research assistants were se-
lected from among local people. They
underwent a 5-h training in the admin-
istration of the questionnaire. This in-
cluded the recording of responses of sev-
eral patients to whom the questions were
read by a trained investigator until such
were reliably recorded.
Follow-up. O n the basis of pilot testing,
a cut-off point for the local score on the
20 “non-psychotic” items of the SRG was
selected for each study area. This selection
was based on the score which was likely
to yield optimal sensitivity and specificity,
i.e. to yield as few false positives and
false negatives as possible. All patients
scoring above this cut-off point or scoring
14
191
at least one positive item on the four
“psychotic” items were regarded as “po-
tential cases” and followed up. In addi-
tion, a sample of those cases scoring less
than the %on-psychotic” cut-off point and
with no positive “psychotic” items were
also followed up. The follow-up procedure
included:
i) A structured psychiatric interview:
the shortened version of the Present State
Examination (PSE). The PSE was admin-
istered by research psychiatrists who had
undergone a recognized training in the
use of the PSE in English and had been
given further experience in its use in local
languages.
ii) A diagnostic assessment and formu-
lation (DAF) completed on the basis of
the PSE ratings. Once again, research psy-
chiatrists made these diagnoses, and inter-
centre reliability had been checked. The
screening procedure is summarized in
Fig. 1. The frequency of psychiatric dis-
order among 1624 patients, who were at-
tending primary health facilities in the
four study areas, varied around 13.9 %.
The majority of cases were suffering from
neurotic illness and, for most, the present-
ing complaint was of a physical nature
such as headache, abdominal pain, cough
or weakness (for a full report see (24)).
Social Unit Rating (SUR). For the pa-
tients who were detected by means of a
brief questionnaire and next confirmed in
a psychiatric interview, a schedule was
used to study the effects of their illness
on the family or household. It was not
developed as a structured questionnaire.
The pressure of patients at the clinics and
the limited availability of research per-
sonnel restricted the burden areas to be
examined. We thought that the first areas
which might lend themselves to suppor-
tive management were those of social ac-
ceptance of the patient, economic burden
192 R. GlEL ET AL.

and disturbance of relationships in pa- functioning is contaminated by the p r e

tient's family. We could only assess the
burden as perceived and described by the
relative who accompanied the patient at
the time of the interview. A more objec-
tive assessment at the patient's home
would have involved too much travel. We
tried to assess some aspects of pre-illness
functioning of the social unit. As all in-
formation was collected in one interview,
it is possible that a relative's view of past
sent situation in the social unit. Responses
were required for each item following its
full discussion, before a rating or assess-
ment could be made. The interviewers,
who were drawn from the various univer-
sities involved in the study, had to be
familiar both with the schedule and the
community where the interviews were
conducted. They had to be knowledgeable
about and sensitive to local social norms

1 A l l adults attending c l i n i c 1

P o t e n t i a l c a s e s according to SR Mental d i s o r d e r u n l i k e l y
I (meets none of c r i t e r i a
on SRQ)

All p a t i e n t s
/
10% p a t i e n t s

90% p a t i e n t s

Y
PSE: s c r e e n i n g v e r s i o n
DAF SUR

I Entry i n t o r e g i s t e r of c a s e s I
Fig. 1. Case detection procedure: diagrammatic representation. SRQ = Self Reporting Ques-
tionnaire; PSE = Present State Examination (screening version); DAF = Diagnostic Assess-
ment Form; SUR = Social Unit Rating.
 BURDEN OF MENTAL ILLNESS ON FAMILY
and values. The interviews were conducted
with a responsible member of the patient’s
social unit, for example the head of the
household, so that reliable information
could be expected. The interviewers were
also instructed first to assess pre-illness
functioning of the social unit. A set of
instructions served to focus questioning
and rating.
Translation and training. All instruments
were translated by study teams into local
languages as necessary and appropriate,
e.g. in RR, SJA and SAM research
workers could use English but all ques-
tions put to patients had to be translated
into Hindi, Arabic and Philippino. Back
translations were made independently by
workers who did not know the original
version. Where necessary, adjustments
were then made to the original transla-
tion. Research workers were trained in
groups, starting by administering the
screening schedules to each other and
proceeding to practising with 20 patients
before the screening proper was started.
Some characteristics
of social units
In addition to each patient’s socio-demo-
graphic data, information was collected
on the characteristics of his social unit,
i.e. the household of which patient was a
member. This concerned, in particular,
factors which could increase the unit’s
vulnerability to the negative influences in
one of it’s members. In Table 2 the most
important factors have been summarized.
We thought that the head of household’s
status as a resident in the area could af-
fect the stability of the unit. Table 2
14.
193
shows that the urban areas of Union and
Sampaloc were least often indigenous. In
Union 10.1 % of heads of household had
migrated into the area less than 1 year
before, in Raipur Rani, Shagara and Sam-
palm the percentages of recent immi-
grants were negligible. The table gives
all immigrants. The level of subsistence
was also strikingly different in the areas.
Good (well fed, housed and clothed, able
to cope even if a productive member is
incapacitated for up to 3 months) and
satisfactory (usually above poverty, can
tolerate minor illness) levels were taken
together, as well as borderline (periods
of below average subsistence - more than
25 % of the time) and poor (persistent
deprivation, poorly clothed and housed)
levels. The number of poor households
was greatest in Sampaloc (19 or 22.9 %),
followed by Raipnr Rani (5 or 8.2 %),
Union (5 or 7.2 %) and Shagara (3 or
6.5 %).
Except for a minority of households in
Raipur Rani (8 or 13.1 %), all others had
been in contact with the health services
on previous occasions. As the table shows,
almost all would not hesitate to attend
again in case of illness.
Apparently, previous contact with tra-
ditional healers was less common in Union
(55 households (79.9 %) had no such con-
tacts) and Raipur Rani (53 (86.9 %)), than
in Shagara (15 (32.6 %) without such
contact) and Sampaloc (17 (20.5 %)). The
table shows that in the two latter places
people would attend again.
With regard to previous illness in the
social units, Sampaloc and Raipur Rani
had been affected more seriously. The
last two items in the table show whether
people would turn for help to religious
leaders or local chiefs or elders. Obvious-
ly, few would do so.
Crude ranking of the areas on the vari-
ous characteristics listed in Table 2 sug-
194 R. GlEL ET AL.

Table 2
Characteristics of social units of patients in four pilot study areas
Adult out patients with mental disorder in
Characteristics of Union Raipur Shagara Sampaloc
patient’s social unit 69 pts 61 pts 46 pts 83 pts
Resident status*
native 1( 1) 52 (85) 24 (52) 21 ( 25)
immigrant 68 ( 99) 9 (15) 22 (48) 62 ( 75)
Subsistence level*
good or satisfactory 28 ( 40) 49 (80) 31 (67) 44 ( 53)
borderline or poor 41 ( 60) 12 (20) 15 (33) 39 ( 47)
Contact with health service**
would attend again 69 (100) 45 (74) 83 (100)
would not attend - 8 (13) -
Contact traditional healer**
would go again 6( 9) 52 ( 63)
would not go 8 ( 12) 14 ( 17)
Previous illness*
none 13 ( 19) 24 (39) 1( 1)
minor 52 ( 75) 23 (38) 58 ( 70)
serious 4( 6) 14 (23) 24 ( 29)
Local resources
religious leader*** 6( 9) 16 ( 19)
chief or elders*** - -
* Percentages of total number of patients in each area.
** Patients who did not attend before are not given in table.
*** Only patients who would ask for help are given in table.

gests that in Union and Sampaloc social
units are more vulnerable than in Shagara
and Raipur Rani in that order.
Burden of mental illness
On the patient’s unit
Table 3 shows the burden a mentally ill
member constituted on his or her house-
hold. People were asked to indicate
whether a patient’s condition had resulted
in a minor loss of money which could
be met from savings or with outside as-
sistance; or whether borrowing or selling
of property had been necessary. The table
shows that social units in Union had been
most vulnerable, followed by those of
Sampaloc, Raipur Rani and Shagara. The
overall economic effect was measured by
finding out whether the social unit could
continue as before; whether there had
been a shortage of food and other neces-
sities, or even serious hardship. Again,
the social units in Union and Sampaloc
were hardest hit followed by Raipur Rani
and Shagara. The disturbance of personal
relationships had affected the social units
in the study areas in the same order, al-
though in all areas in about half or more
of the social units no additional conflict
or strain had resulted as compared with
 BURDEN OF MENTAL ILLNESS ON FAMILY 195

Table 3
Consequences of mental illness for social units of patients in four pilot study areas
Consequences of mental Union Raipur Shagara Sampaloc
illness for social unit 69 pts 61 pts 46 pts 83 pts
Financial burden*
none 6 ( 9) 30 (49) 39 (85) 23 (28)
minor loss 34 (49) 17 (28) 7 (15) 41 (49)
major loss 29 (42) 14 (23) - 19 (23)
Overall economic effect*
none 14 (20) 41 (67) 43 (93) 34 (41)
some shortage 45 (65) 14 (23) 3(7) 33 (40)
hardship 10 (14) 6 (10) - 16 (19)
Personal relations changed+
no 33 (48) 50 (82) 39 (85) 47 (56)
minor arguments 30 (43) 10 (16) 7 (15) 26 (31)
serious trouble 6 ( 9) 1 ( 2) - 10 (12)
Social acceptance*
no effect 61 (88) 58 (95) 42 (91) 66 (80)
minor impairment 7 (10) 1 ( 2) 4( 9) 12 (14)
serious deterioration 1 ( 1) 2( 3) - 5 ( 6)
* Percentages of total number of patients in each area.

the situation before the illness. Minor
arguments or quarrels were most common
in, Union, and serious disputes within the
social unit or with neighbours in Sampa-
loc. It is surprising how little social ac-
ceptance by the environment of the social
units as a whole had suffered in all areas.
In Sampaloc serious or long-lasting de-
terioration was somewhat more common.
Crude ranking of the study areas accord-
ing to the total burden measured along
the various dimensions shown in the ta-
ble indicates that social units in Sampa-
loc and Union proved most vulnerable
followed by Raipur Rani and Shagara.
The latter area was by far the most stable,
even though Raipur Rani had a more
satisfactory level of subsistence in the
social units prior to the illness.
Having indicated roughly the burden
of mental illness on the social unit, it is
important to identify characteristics which
relate more closely to its vulnerability.
We will do this separately for each area.
Union de Vivienda Popular
In the preceding sections we compared
primarily the participating pilot study
areas, trying to establish the more vulner-
able ones in which the burden of mental
illness on a patient’s social unit was more
evident. For planners of strategies in each
of the areas, it is more important to iden-
tify high risk social units in their own
area. For this purpose it is necessary to
relate variables describing the burden to
other variables indicating pre-illness char-
acteristics of social units. Such factors
can be considered to have predictive val-
ue, and for the planner, should earmark
high risk groups in the population if they
196 R. GlEL ET AL.
occur closely associated with economic
or other deterioration following illness.
In the urban slum area of Union only few
associations could be established. The
resident status of the head of a patient’s
household, previous illness in the family,
patient’s marital state, and pre-illness rela-
tionships in the household did not show
a statistical association with whether or
not mental illness constituted a financial
burden on the social unit.
Whether or not a financial burden r e
sulted from mental illness was associated
with the unit’s subsistence level prior to
it. Of 28 units with a good or satisfactory
level of subsistence five (18 %) faced seri-
ous financial losses later on, and of 41
units with a poor or borderline subsistence
level 24 (58 %; x2 = 9.69, P < 0.01). The
statistical associations were tested with
chi-square, with Yates’ correction (25).
The overall economic effect of mental ill-
ness showed exactly the same pattern of
relationships, i.e. only with the level of
subsistence prior to the illness. Of 28 so-
cial units with a good or satisfactory pre-
illness level of subsistence none experi-
enced serious economic hardship, and of
41 poor or borderline social units 10
(24 %) (1”= 6.14, P < 0.02). A deterio-
ration of relationships in the social unit
followed more often in those with a mar-
ried patient. Of the 41 social units with
a married patient 26 (63 %) experienced
minor or major conflicts following men-
tal illness, and of 28 social units with an
unmarried patient only 10 (36 %) (xz =
4.07, P < 0.05). A disturbance of rela-
tionships occurred primarily in social
units with serious disharmony prior to the
illness: in only one of 57 units with not
more than minor misunderstandings, and
in five (42 %) of 12 units with al-
ready serious disharmony ( x 2 = 15.18, P
< 0.001).
Raipur Rani
Very few characteristics of the social unit
prior to the illness were predictive of any
burden later on. A poor borderline level
of subsistence prior to the illness related
more often to a serious financial burden:
of 49 units with a good or satisfactory
level only two (4 %) were later on bur-
dened seriously by a patient’s mental dis-
turbance, and of eight poor borderline
units four (x2 = 10.91, P < 0.001). Dis-
harmonious relationships prior to the ill-
ness were related to disturbed relation-
ships later on: of 45 units with no or minor
conflicts only four (9 %) had serious
trouble later on, and of 16 disharmonious
units seven (44 %; xz = 7.49, P < 0.01).
Shagara Jebel Awlia
In this area the only significant relation-
ship was between disharmonious relation-
ship prior to the illness and seriously dis-
turbed relations later on: of 35 units with
little or no conflict one (3 %) had serious
trouble later on, and of 11 disharmonious
units six (55 %; ,yz = 6.78, P < 0.01).
Sampaloc
In this metropolitan district of Manila
few predictors of a burden due to mental
illness could be identified. Of 67 units
with no or minor previous disharmony
25 (37 %) later on had minor or serious
relationship problems and of 16 units with
previous disharmony 11 (,yz = 4.00, ,P
< 0.05). Previous illness in the unit was
not statistically significantly predictive of
a serious financial burden resulting from
mental illness. Of 59 units without previ-
ous illness 10 (17 %) were seriously af-
 BURDEN OF MENTAL ILLNESS ON FAMILY 197

Table 4
Distribution of three major categories of mental illnw in screened social units in four pilot
study areas
Category of mental illness Union Raipur Shagara Sampaloc
Psychosis 1 6 11 6
Non-psychotic disorder 67 53 28 74
Epilepsy 1 2 3 -
Total 69 61 42 80

fected, and of 24 units with such illness Burden of mental illness in

nine (38 %; ,y2 = 3.00 n.s.). Previous ill-
ness also had no significant bad overall
effect: of 59 units without serious previ-
ous illness eight (14 %) were badly af-
fected, and of 24 units with such illness
eight (33 %; ,y2 = 3.11 n.s.). Units with
a married patient were more often eco-
nomically affected in a bad way than those
with an unmarried patient: 12 (25 %) of
48 units with a married patient, and four
(11 %) of 35 others (x2 = 1.60 n.s.).
relationship to diagnosis
Table 4 gives the frequency distribution
of social units according to the major
diagnostic classification of its mentally
disturbed member. Because this table
concerns the adult population screened in
clinics only, the number of psychotics is
relatively small. In addition, while in Sha-
gara and Raipur Rani psychotic patients
are tolerated for a long time, the chances

Table 5
Numbers and percentages** of social units with major effects of mental illness in four pilot
study areas
Union Raipur Shagara Sampaloc
Major effects (%I (%I (%I (%I
Major financial burden
psychosis - 3 (50) 2* (18) 3 (50)
other 29 (43) 11 (20) 5* (16) 16 (22)
Major economic effect
psychosis - 1 (17)
other 10 (15) 15 (20)
Major disturbance of
relationships
psychosis 3 (50)
other 7 ( 9)
Major disturbance of
social acceptance
psychosis 1 (17)
other 28 (36)
* In Shagara the social units experienced only minor effects.
** Percentage of all units with that diagnostic category in the area (see also Table 4).
198 R. GlEL ET AL.
are that, particularly in Union, such
people are more readily rejected and put
in hospital or start wandering. In both
cases they would not be found in a gen-
eral out-patient population. On the other
hand, the higher number of psychotics in
the Shagara sample probably indicates
that in that area social distances between
the area population and its health service
is smallest.
Table 5 gives the burden of mental ill-
ness in the social units according to the
diagnostic classification. Epilepsy in none
of the areas had more than minor ill-
effects, except in the one case in Union,
where it constituted a major financial and
overall economic burden. For this reason
epilepsy was taken together with non-
psychotic disease. No statistical tests were
performed for Union because of its lack
of psychotic cases.
In Raipur Rani psychosis more fre-
quently caused an economic burden. So-
cial acceptance of psychosis was a prob-
lem in Raipur Rani, while in Manila the
other conditions were more often stigma-
tizing.
Discussion
The case presented in the introduction
illustrates two aspects of mental illness
in an Indian village. On the one hand,
the psychotic disturbance in an important
member of the household succeeded in
gradually destroying the socio-economic
prospects of the family unit as a whole.
Earnings decreased while spending on
health care increased until debts ensued,
and the younger generation had to lower
its goals in life. On the other hand, the
stable and reciprocal pattern of family
life typical of the village, appeared to
have prevented the breaking up of the
family unit for a period of 10 years.
In another case in Raipur Rani - a
farmer aged 60 years - socio-economic
losses were minimal, first of all because
his 18-year-old son, who had been sharing
his work, quickly and forcefully inter-
vened. Secondly, his mental disturbance
did not last very long, and the family had
some financial reserves. This man, who
had married for the third time because
his two previous wives had died, lived
together with the two sons and four
daugthers he had by his third wife, and
had a prosperous farm with some cattle.
Shortly after he lost the fingers of his
right hand in an accident, he became very
talkative and energetic, refusing to stop
work in the fields. Then he became ag-
gressive and abusive, and wanted to sell
his cattle. His son soon realised that some-
thing was seriously wrong. He put his
father in chains and locked him in a sepa-
rate room. When he was discovered after
3 months by the health worker visiting
the village, psychotropic drugs rapidly
cured his condition, and everything re-
turned to normal. Without treatment the
manic state would probably have ex-
hausted the old man and killed him in
the end.
It is obvious that mental health care
delivered at a distance from the village,
with its cost in time, money and the ef-
fort of relatives while accompanying the
diseased person, is too heavy a burden
on the family of rural India. Yet, a rural
health worker with the double but fairly
simple task of ensuring regular psycho-
tropic medication of the patient and re-
storing confidence in the villagers by his ap-
proach to the patient, and by his explana-
tions to neighbours, did completely alter
the fate of B. and his family, and prob-
ably saved the other man’s life. The psy-
 BURDEN OF MENTAL ILLNESS ON FAMILY
chiatric out patient service of a distant
mental hospital, or a nearer but socio-
economically still distant general hospital,
could never have achieved such a differ-
ence.
Culture, social structure at the level of
the community, socio-economic structure
of the family unit, and personal factors
interact in a complex way in response to
the emergence of mental illness.
The culture determines the concepts of
disease, which in all four study areas
with regard to mental illness still con-
tained a strong supernatural element with
little expectation regarding the effects of
modem health care. Culture is to some
extent synonymous with religion, which
also influences attitudes towards the in-
sane. Of Roman Catholicism, Hinduism
and the Islam, the latter is probably most
explicitly tolerant towards mad people.
Particularly in the Sudan the religious
leader, the Said or Sheik, often takes men-
tally disturbed people under his protec-
tion, trying to help them and finding no
difficulty in collaborating with mental
health professionals who respect him.
The political system is also a part of
culture, and is to a large extent respon-
sible for the type and availability of the
health care system: whether free to all
or not, and whether concentrated only in
the towns or extending to the rural areas.
Although in Union and Sampaloc the
physical distance to fairly well developed
health services was minimal, in the former
the social distance was probably quite
formidable. In Raipur Rani the physical
distance was a major obstacle until the
mental health programme which was part
of this study reached the villages. Shagara
was perhaps best off, with a nearby town
and a chain of health facilities extending
to the villages.
Leadership, group cohesion and reci-
199
procity are structural factors at the level
of the community. The four study areas
differed widely in this respect. In Union
there was little evidence of any circum-
scribed community. Raipur Rani and Sha-
gara exhibited far more leadership and
reciprocity of a traditional nature. Sam-
paloc was perhaps in between, with more
of a political communal structure which
could function well, depending on the
participation of the captain, his council-
lors and the informal leaders in the com-
munity.
Factors influencing the functioning of
the social or family unit are its level of
subsistence and socio-economic activities,
its composition (extended or nuclear fami-
ly), its stage in the cycle of family life,
and its housing conditions. In all four
study areas financial reserves were prob-
ably minimal for the majority of people,
while people in Raipur Rani and Shagara
were least dependent on money for their
daily subsistence. Houses in all four areas
are not big enough to house a severely
disturbed person without seriously affect-
ing the life of the others, but Sampaloc
had the least favourable conditions and
showed more disturbance of personal rela-
tionships due to greater population den-
sity. The importance of the factors ‘stage
in the cycle of family life’ and ‘socio-
economic activities’ was evident from the
second Indian case. The oldest son could
easily take over his father’s responsibilities
with very little sacrifice.
Finally, at the personal level the type
of illness, whether self-limiting or chronic,
with severely affected reality testing or no
loss of insight, is a significant determinant
of outcome. The patient’s position is also
an important factor.
C., a 24-year-old inhabitant of Sampa-
loc, had been psychotic on and off for 10
years. During her episodes she is suspici-
200 R. GlEL ET AL.
ous of people, abusive, sexually disinhi-
bited, at times assaultive, and in general
an embarassment to her family, particu-
larly to her father who is a barangay cap-
tain, and her brother who is a police
officer. Although she does some part-time
work when she is well, the family does
not expect her to contribute to the family
income. A spell in the mental hospital
did not significantly alter the course of
her illness and maintenance on psycho-
tropic drugs was too expensive and both-
ersome. The family appeared to have re-
signed to her condition, managing it by
locking her up and keeping her out of the
way whenever she had a relapse. The
family was wary of any interference dur-
ing our study, fearing that something
shameful would be revealed, when they
had otherwise succeeded in keeping every-
thing under control. The burden in this
case was emotional rather than economi-
cal. In a less stable situation at the level
of the social unit, the patient could easily
have been rejected or left in a mental
hospital.
The study not only revealed some as-
pects of the burden of mental illness on
the family, but also demonstrated the need
for mental health care to be extended to
the community.
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