Mathias et al. BMC Public Health (2015) 15:446
DOI 10.1186/s12889-015-1778-2
RESEARCH ARTICLE
Open Access
Under the banyan tree - exclusion and inclusion
of people with mental disorders in rural North
India
Kaaren Mathias*, Michelle Kermode, Miguel San Sebastian, Mirja Koschorke and Isabel Goicolea
Abstract
Background: Social exclusion is both cause and consequence of mental disorders. People with mental disorders
(PWMD) are among the most socially excluded in all societies yet little is known about their experiences in North
India. This qualitative study aims to describe experiences of exclusion and inclusion of PWMD in two rural
communities in Uttar Pradesh, India.
Methods: In-depth interviews with 20 PWMD and eight caregivers were carried out in May 2013. Interviews probed
experiences of help-seeking, stigma, discrimination, exclusion, participation, agency and inclusion in their households
and communities. Qualitative content analysis was used to generate codes, categories and finally 12 key themes.
Results: A continuum of exclusion was the dominant experience for participants, ranging from nuanced distancing,
negative judgements and social isolation, and self-stigma to overt acts of exclusion such as ridicule, disinheritance and
physical violence. Mixed in with this however, some participants described a sense of belonging, opportunity for
participation and support from both family and community members.
Conclusions: These findings underline the urgent need for initiatives that increase mental health literacy, access
to services and social inclusion of PWMD in North India, and highlight the possibilities of using human rights
frameworks in situations of physical and economic violence. The findings also highlight the urgent need to reduce
stigma and take actions in policy and at all levels in society to increase inclusion of people with mental distress
and disorders.
Keywords: India, Exclusion, Stigma, Inclusion, Mental illness, Qualitative
Background
People with mental disorders (PWMD) are among the
most marginalised in all societies with narratives of social exclusion across nearly all cultures. The World
Health Organisation (WHO) defines social exclusion as
“the dynamic, multi-dimensional processes driven by unequal power relationships interacting across four main
dimensions - economic, political, social and cultural and at different levels including individual, household,
group, community, country and global levels”. Social
exclusion therefore creates a sense of not belonging,
non-participation in community life and diminished opportunity and capacity to participate. It results in unequal
* Correspondence: kaarenmathias@gmail.com
Landour Community Hospital, Landour, Uttarakhand 248179, India
access to resources, capabilities and rights which leads to
health inequalities [1].
Stigma is a key driver of social exclusion. Stigma occurs when labelling, status loss, stereotyping, separation
and discrimination occur together in situations that
allow them [2] clarifying that social exclusion entails
both prejudice (attitudes) and discrimination (behaviour). It leads to individuals being perceived as ‘tainted
and discounted’ [3]. Social exclusion can be conceptualised as interlocking and mutually compounding problems of impairment, discrimination, diminished social
role, lack of economic and social participation and disability [4].
Mental illness is complexly related with many components of social exclusion such as lack of social networks,
underemployment [4]. Exclusion of PWMD contributes
© 2015 Mathias et al.; licensee BioMed Central. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain
Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article,
unless otherwise stated.
Mathias et al. BMC Public Health (2015) 15:446
to under-treatment, social isolation, low help-seeking
and limited access to care [5] leading to a vicious circle
of further exclusion [6]. When working with communities to support and build mental health, understanding
the mechanisms of exclusion and inclusion and the
experiences of PMWD informs the development of effective responses to reduce stigma, improves access to
care, and amplifies ‘safe social spaces’[7].
In this paper we define social inclusion in relation to
mental health as “a virtuous circle of improved rights of
access to the social and economic world, new opportunities, recovery of status and meaning, and reduced impact of disability” [4]. Social inclusion includes the
opportunity and ability to participate as one wishes, to
exercise the rights and responsibilities of full citizenship
[8]. In seeking social inclusion, PWMD are better conceived as agents than ‘consumers’, [9] for whom recovery
includes recovery from experiences of social exclusion.
WHO and mental health programmes in high income
countries (HICs) increasingly recognise the importance
of social inclusion as a key outcome for evaluating the
effectiveness of mental health programmes. Inclusion
and exclusion can be conceptualised as an interwoven
continuum. Though critically important there are sparse
definitions and surprisingly little understanding of how
to integrate inclusion into practice particularly in low
and middle income countries (LMICs) [10,11].
Social exclusion of PWMD in North India
India, a vast country, with one seventh of the world’s
population is home for millions of PWMD. The urgent
need for greater understanding of exclusion and how it
impacts access to care has been highlighted [12,13]. Up
to 90% of people in India with mental disorders do not
have access to bio-medical care [14]. The majority of
studies which describe experiences of exclusion for
PWMD, have been conducted in South India [13,15-19],
and East India [20,21]. Almost no research has described
experiences of exclusion of PWMD in the Hindi speaking belt representing perhaps 600 million people.
Important features in the landscape of PMWDs stigma
experiences in India show exclusion as widely experienced
and also moderated by gender and age [15-17,21,22].
South Indian studies showed that not only were women
with mental illness stigmatised in relation to marriage, but
a woman’s illness also prejudiced marriage opportunities
for relatives [13,23]. These results underline the gendered
role definitions in Indian society as well as the halo effect
of stigma, i.e. the excluding social processes such as reduced marriage opportunities for female relatives, that impact whole families.
A recent literature review focussing on social inclusion/exclusion of PWMD found all 36 studies came from
High Income countries (HICs) [10]. The urgent need for
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qualitative and contextually located accounts of stigma,
inclusion and exclusion in global mental health research
has been acknowledged [24,25]. Quantitative methods
can miss textured nuances of experience and narratives
of inclusion that are concomitantly present [26,27].
This research formed part of the baseline data collection for two community mental health programmes, and
the findings are being used to inform initiatives that will
promote social inclusion of PWMD.
Methods
Setting
We conducted this research to understand exclusion
and inclusion of PWMD in two rural communities set in
Seohara and Sadoli-Kadim, two administrative blocks of
western Uttar Pradesh (UP), India. We worked with two
project teams of Emmanuel Hospital Association (EHA)
(www.eha-health.org), an organisation that works across
North India in community health and development.
These teams had been focussing on community mental
health promotion since April 2012 (Saharanpur district)
and April 2013 (Bijnor district). Western UP has been a
recent flashpoint for communal violence with riots and
protests in both 2013 and 2014. Saharanpur is a relatively poor district with 3.5 million people (40% Muslim,
60% Hindu) and a literacy rate of 70%. Health indicators
for the district are lower than national and UP state
averages. Bijnor district has 3.6 million people (66%
Muslim and 32% Hindu) and a literacy rate of 78% [28].
The national District Mental Health Plan was relaunched in India in 1996, seeking to ensure that there is
a psychiatrist and psychologist as part of a mental health
team for each district. It has been imperfectly and incompletely implemented across the country [29,30]. In
both study districts, there were no psychologists, no government mental health services and only one private
psychiatrist. PWMD typically visit local ‘doctors’ (no formal training) and traditional religious healers.
Both study areas are dominated by agricultural land
dotted with large villages of 1000 – 8000 people, with
densely co-located houses. The majority of families own
their house but work as labourers for large land owners.
In a typical rural UP household, the eldest son and his
wife and family, and other sons, live in a joint family
with the mother and father. Daughters move into the
family home of their husbands after marriage. Family resources for inheritance are divided among the sons in
both Muslim and Hindu communities.
Participants
EHA community workers identified known community
members as potential participants fulfilling the following
inclusion criteria: A with a likely mental disorder; B
greater than 17 years of age; C willing to participate in
Mathias et al. BMC Public Health (2015) 15:446
this study and D living with family members/ a caregiver.
The first author (a female medical doctor) screened these
potential participants for a mental disorder using the
Global Mental Health Assessment Tool [31]. 20 PWMD/
primary caregiver dyads (pairs) were identified who met
criteria for a mental disorder and who consented to be
interviewed for this study. 19 of 20 PWMD experienced
severe mental disorders (E.g. schizophrenia or postpartum psychosis).
The majority of PWMD had never visited a mental
health service provider and had no psychiatric diagnosis.
Only two were taking psychotropic medication at the
time of interview. Seven (of 20) PWMD were too unwell
to contribute to interviews (i.e. they were psychotic,
non-responsive and unable to concentrate) so interview
data from their 7 caregivers was included in analysis. Of
the 13 PWMD well enough for interview, eight were
interviewed separately from their caregivers. These interviews did not reveal data importantly different to
those conducted with both caregiver and PWMD
present. At five interviews there were additional observers of the interview, each was a direct relative and
there by request of the participants. Names used in this
manuscript are fictitious.
Data collection
A female social worker research assistant conducted the
interviews in June 2013 in the homes of participants.
She had worked several years in the study area, and had
been trained to conduct in-depth qualitative interviews.
The first author who is trained and experienced in
qualitative research methods, supervised the first four
interviews and performed follow up interviews with
three participants at a later date. The interviewer used a
semi-structured in-depth interview guide used elsewhere
to investigate stigma of people with schizophrenia in India
[13]. The interview guide included open-ended questions
about experiences of mental disorders, including help
seeking behaviour /participation, and experiences of inclusion and exclusion. Interviews were recorded verbatim
with a digital voice recorder, then listened to repeatedly,
translated and transcribed from Hindi to English using
word processing software by the research assistant. Interviews typically lasted from 45 to 90 minutes.
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Meaning units describing exclusion and inclusion of
PWMD, driven by the data, were identified and coded.
Emerging codes were discussed by authors (KM, MKe
and IG) and grouped to form categories. Finally, crosscutting themes were sought, to make explicit latent content in the text. Open Code software was used to help in
the coding process [33]. Table 1 provides an example of
the coding process.
Ethics
Informed consent, compliant with ethical guidelines on
informed consent for PWMD [34,35], was obtained. All
potential participants who were mentally unwell at the
time of screening were given information on how to access
psychiatric care. The study was approved by the Emmanuel
Hospital Association Institutional Review Board of Ethics
in April 2013.
Table 2 summarises socio-demographic characteristics
of participants.
Table 3 in the presents participants directly quoted in
this paper.
Results and discussion
12 key themes emerged from the data. Under the subheading of exclusion fall the themes of Distancing, Disregarding, Negative judgement, Social isolation, Minimising
discrimination, Unworthiness, Verbal violence, Economic
violence and Physical violence. While experiences of exclusion were dominant for nearly all participants, the subheading of inclusion includes three themes, Participation,
Belonging and Support related to experiences of inclusion
showing experiences to have a dappled light mixed
through the darkness of exclusion. Finally experiences of
exclusion and inclusion can occur together, as described
under the last sub-heading.
Exclusion
Distancing
Since they had become mentally unwell, PWMD felt
people were less willing to interact with them. In their
communities, friends and neighbours would sometimes
not acknowledge them and rarely sat to talk as they had
done earlier. Raju (45 years, man) described this sense of
distancing also occurring in his relationships at home:
Analysis
The interviews were analysed using primarily an inductive approach while acknowledging the theoretical assumptions within in the study design, the initial research
questions as well as existing knowledge which influenced
the topics covered by the interview guide. Qualitative
content analysis was chosen as an approach that is attentive to both manifest and latent content of data [32].
KM read and re-read the transcripts of the interviews.
Not just outsiders but my family also maintained
distance…..even my wife and children. I feel bad still
as my children do not talk to me. I feel hurt when my
children do not come to me often.
Participants described direct interactions with neighbours diminishing after onset of the illness and neighbours talking about the person affected, but no longer
Mathias et al. BMC Public Health (2015) 15:446
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Table 1 Example of coding process
Selected codes
Categories
Theme
Choosing not to visit household since X became sick
Loss of relationship due to illness
Distancing
Neighbours no longer visiting this house
interacting with them. Faiz (45 years, man), describes
the loss of social interactions for his brother Firoz:
No friend of his has ever come to see him. When he
goes out he recognizes people, but people do not talk to
him. People say he is mad and there is no use talking
to him… No one actually hates my brother, but I wish
that people would stop pitying him. People keep saying,
‘Poor fellow what has become of him?’ But no one says
anything to him at all, and instead they talk about him
amongst themselves.
We often observed family members talking on behalf
of the affected person in their presence, without giving
them any opportunity to speak. However, it is important
to note that unwell PWMD, often with untreated
chronic illnesses, were almost mute, and several household members said that the affected person had only
spoken a few words in many months.
Disregarding
Exclusion from social interactions extended to disregarding PMWD’s voices -e.g. discouraging PWMD participation in family discussions. Even when the PWMD could
be authoritative, such as describing their symptoms, some
family members disregarded their narratives. Nilofer
(35 years, woman), who had had experiences of voicehearing after her previous delivery, described how she
related the recurrence of her voice-hearing symptoms to
her husband who disbelieved her:
Now after my baby boy was born some voices started
in my head again. If anyone spoke something I felt
that my mind had swollen. I was unable to hear
anything and was so angry that I could have either
killed myself or someone else. When I told my husband
about this, he said that cold and flu has affected my
mind. I told him that it is not flu, it’s the same illness
that I had long ago. ….
Very few PWMD were involved in household decision
making, often reporting that when trying to contribute,
they were told they were incapable. This suggests some
PWMD were stripped of their agency, even in their own
homes, as Nilofer describes:
My husband does not tell me when he takes some
decision. When I ask him something, he says ‘Why do
you need to know? You are mad.’ He says that I try to
be smart. I feel very bad when he says so.
Negative judgement
Participants described how neighbours negatively judged
the behaviour of PWMD, E.g. Pakeeza, (25 years, female)
describes neighbours’ judgements of her brother Perez’
behaviour as an elaborate ‘drama’ to evade work:
Our neighbours say that Perez doesn’t want to work so
he is faking all this drama. But actually my brother
wasn’t like this at all earlier. Before he became unwell
he was a very hardworking person… like I remember
when we was working as a truck driver he would drive
from Moradabad to Delhi and back to Moradabad
again (8 hours driving) without stopping for a meal
break.
Significantly caregivers said that negative community
responses to PWMD seemed to be greater when the
Table 2 Profile of 20 PWMD and 8 caregiver participants
Variable
Detail
PWMD
Caregiver
Sex
Women
9
5
Men
11
3
Range
22 to 50 years
25 to 50 years
Mean age
38 years
39.5 years
Muslim
9
3
Hindu
11
5
Government health worker
1
0
Responsible for house
7 of 9 women
5 of 5 women
Daily wage work
4 of 11 men
3 of 3 men
Age
Religion
Employment
Mathias et al. BMC Public Health (2015) 15:446
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Table 3 Participants cited in this paper
Pseud-onym Age Sex Possible mental illness
Religion Household situation
Raju
45
M
Bipolar disorder
Hindu
Lives with wife and 2 adult children
Firoz
42
M
Schizophrenia
Muslim
Lives with brother Faiz and his family
Faiz
48
M
-
Muslim
Brother of Firoz, lives with wife and children
Nilofer
35
F
Post-partum psychosis
Muslim
Lives with husband and 5 children under 10 years
Perez*
28
M
Bipolar disorder
Muslim
Lives with wife and their children in his parent’s home, and sister Pakeeza
Pakeeza
25
F
-
Muslim
PCG, lives with parents and 11 siblings and their families, including Perez
Anju
28
F
Post-partum psychosis
Hindu
Lives with husband and 2 children
Golu
35
F
Schizophrenia
Muslim
Single woman head of household, 4 children, husband working in Delhi
Kundan*
24
M
Schizophrenia
Hindu
Lives with parents Kartik and Kavita, and brother
Kartik
50
M
-
Hindu
PCGs, live with Kundan and one other son
Kavita
49
F
-
Hindu
Pravin*
24
M
Schizophrenia
Hindu
Lives with mother Preeti and 2 siblings
Preeti
50
F
-
Hindu
PCG, widowed, lives with Pravin and 2 other children
Jitin*
45
M
Schizophrenia
Hindu
Lives with wife, Jyoti and 4 children
Jyoti
45
F
-
Hindu
PCG, lives with husband Jitin, and 4 children
Lata
45
F
Post-partum psychosis / depression Hindu
Lives with husband and children, including 2 married sons and their wives
Shmayla
32
F
Post-partum psychosis
Lives with husband and 3 children with her sisters also living nearby
Muslim
“*” indicates person with mental disorder who was too unwell to contribute to interview and therefore his/her primary caregiver (PCG) data was also used
in analysis.
PWMD displayed socially unacceptable behaviours.
Caregivers described their family member facing greater
ridicule when they disclosed symptoms such as commanding auditory hallucinations, or engaged in unusual behaviour such as collecting rubbish in pockets to take home.
And my sisters in law didn’t even allow me to bathe in
their bathrooms. After my child was born, I had to
raise the cot on all sides and take my bath there. (…)
And then, when they let me use their bathroom just
occasionally, they would wash their bathroom afterwards,
as if I had some bad disease. I felt really bad at that
time.
Social isolation
Participants described erosion of relationships and
friendships leading to social isolation. A rather abrupt
loss of social connection related to her brother’s mental
disorder is narrated by Pakeeza:
When my brother was fine and worked as a driver,
half of the village was jealous. When he used to come
home from his job, the environment of the village
would become like it was Eid [Muslim festival
celebrated after a month of fasting]. People appreciated
him a lot and were always standing around him in a
crowd. My brother was tall and handsome and he had
many friends at that time. But now when my brother
isn’t well none of his friends come to see him and now
they make stories up about him and laugh at him.
For others, interactions in the community became so
painful, that they stayed at home except for required
transactions. Family members also exhibited overtly excluding behaviours, as in Nilofer’s account of exclusion
from the common family bathroom:
Minimising negative judgements
Participants often would deny experiences of discrimination while almost simultaneously describing their occurrence. There is a sense of participants wanting to
believe they are part of the community despite the facts.
Anju (28 years, female) exemplifies this, after the interviewer asked whether people ever made fun of her:
Nobody said such things and everyone was worried
about my health.[In agitated and louder tone] Even if
2–3 people said something, we can’t do anything. You
cannot seal people’s mouth as they will speak nonsense
if they want.
The following quote from Faiz initially insists that
there was no discrimination against his brother in the
community, but then immediately describes the loneliness of being a caregiver suggesting that community
members’ attitudes would have been more supportive if
his brother had a physical illness:
Mathias et al. BMC Public Health (2015) 15:446
No the villagers do not discriminate against him or us –
my brother Firoz was very good earlier and people know
that so no one treats us badly like that. Still I feel alone
when no one helps me.
[Interviewer: Do you think the villagers’ attitudes would
have been different if Firoz had an illness like diabetes?]
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her husband Jitin’s disinheritance and virtual excommunication from the family below:
Since his illness all the times are difficult with us. [Before]
we lived on the other side of the village with our in-laws
and relatives then since his illness we were sent to this
place and given this two room house…. All our relatives
of my in-laws side have broken all contact with us. They
haven’t given him any money or share in the property….
Of course, then people’s attitude would have been good.
Physical violence against PWMD
Unworthiness
Several female PWMD believed that family members no
longer valued or cared about them. Underneath this was
a sense of abandonment and being unvalued as described
by 35 year old Golu:
My husband is not even slightly worried about me.
Even if I die he will not come to see me. When I fall
sick, he tells my son by phone to get medicines for me
rather than going himself. He never cares. [Long
pause] The thing is, all his brothers listen to their
wives, but he doesn’t listen to me. He says that I am
mad and after he has had his way with me [speaking
of sexual relations] he goes away.
PWMD also described a sense that their value within
a household was contingent on remaining mentally
healthy. Nilofer said that her sisters-in-law would have
thrown her out of the house if her episode of mental illness had persisted:
Once they said to me ‘If you hadn’t recovered and had
remained mad, we wouldn’t have kept you in the house
for a single minute’. I feel so sad that when I am fine, I am
allowed to remain here but they would have thrown me
out when I was not in my senses. Where could I have gone?
Verbal, economic and physical violence
Ridicule of PWMD in public settings was a frequent and
salient experience described by most participants. Kavita
(50 years female), described the public derision experienced by her son.
Yes, people laugh at my son. Yesterday also someone
was mocking him and [because he believes he has
high connections] saying “Sir, please take whatever
you want and rest somewhere. We will get you water.”
Villagers very often make fun of my son.
Economic violence against PWMD
Jyoti, Preeti and one other female caregiver, each described
how, due to their son’s/husband’s mental disorder their
nuclear family had been disinherited (i.e. they did not receive their share of the family inheritance). Jyoti, describes
Overt physical violence against PWMD, carried out by
both family members and neighbours, was a frequent experience. Perpetrators recounted their violent acts without
prompting, or sense of shame. Family members described
‘beating’ to encourage the affected person to ‘get better’.
In some households, family members indicated discomfort
with interpersonal violence and tried to intervene in violent family interactions. Pakeeza described her father’s actions towards her brother Perez:
“How much can he beat my brother when he isn’t
improving? My dad tells him to quit bhang [cannabis]
and my brother refuses to do so. Now we just remain
silent but my father beats my brother when he gets
angry…. My father also tries his best not to beat him.”
Inclusion
Opportunity for participation
The majority of participants had no expectation that
their mental health status could be concealed yet felt
free to at least passively participate in community activities. Most PMWD described freedom to visit neighbours’
houses as they had before their illness, and to attend weddings, social functions and places of worship. As 50 year
old Kartik described:
We never felt that we were treated differently. Even
Brahmins visit my family and we are involved in every
celebration and decisions in our village.
Although the majority of PWMD described exclusion
from decision-making, some had opportunities to participate. Lata (45 years, woman) describes her responsibility in relation to household finances:
My husband took my advice in every matter and most
of the decisions were mine. Children’s education,
clothes and other expenses of the house were totally
my responsibility. ( ) The responsibility for managing
the money and running the family was mine and right
through my sickness my husband gave me the money
to handle.
Support
Some PWMD and caregivers described substantial support from neighbours during periods of mental distress,
Mathias et al. BMC Public Health (2015) 15:446
which was interpreted as a marker of acceptance and belonging. Support was described in two main forms: firstly,
others taking responsibility for the PWMD and caregivers’
normal responsibilities, and secondly, accessing resources
to take the PWMD to health and healing services.
Practical support took many shapes and included feeding and caring for the PWMD and /or caregivers’ children, helping with housework and harvesting, lending
money for health costs, and providing support to caregivers. There were many examples of caregivers performing tasks outside those typically assigned by gender
roles. Here, Anju’s husband describes doing tasks usually
assigned to women of the household as well as the community’s support:
At times I did all the house work or some relatives of
ours helped in the household work….. In villages the
good thing is that if there is trouble at one person’s
home, the neighbours will collectively complete their
work. People from our village also helped us a lot
when she was ill.
PWMD described the significant expenditure and effort that caregivers had made to seek care for them as
evidence of being valued. Several households had to sell
land or livestock to pay for care of the PWMD. Anju
(28 years, woman) described:
For poor people harvest is an important thing. But due
to my illness fields were left like that and even my
cattle also…..A lot of money was spent. A human is
more loveable than money. You can raise money, once
the person becomes ok. See now when I am ok, that
loss of money doesn’t matter to us.
PWMD described reciprocity as a key driver for neighbourly support. Lata described how during her hospital
admissions, when she and her husband were both away,
neighbours took her children to school, cared for the
family cow and watered their crops, which was related
to reciprocity norms within her caste:
We are Harijan and always help someone who is of
our caste. If someone in a family has a seizure and
they need help to go to hospital then we will help that
person. But it is the kind of helping where they know
you also have to help them in their time of need. ( )
even if I take 1 kg of rice then a few days later I must
give it back in full to that neighbour.
Sense of belonging
Many PWMD experienced ongoing positive relationships with relatives and family members as important
for their own wellbeing and sense of belonging. Female
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PWMD in particular described the importance of their
maternal families who in several instances were the primary source of care. Several dyads said their relationships had become stronger during and after the difficult
period of mental illness as Nilofer describes:
Our relationship is better after I fell ill. Now my
husband treats me like I have a new life. Earlier my
husband never loved me and wasn’t interested in
me…. But when I fell ill and he looked after me, he
started valuing me and now I am very happy. He says
that I have undergone too many difficulties…
Relationships that were challenging and later became
positive were particularly mentioned as meaningful and
restorative. Nilofer also acknowledged humour and restoration in her relationship with her aunt:
My aunt once came to visit me … and I spoke bad
words to her. She felt bad and left. …. Now she is ok as
she understood that I was not in my senses at that
time. Now she rings up and she laughs and asks
whether I will behave properly or not when she visits
me next time.
Exclusion and inclusion
Sometimes experiences of exclusion and inclusion occurred simultaneously for one individual. During her
post-partum disorder Nilofer was physically excluded
from the common family bathroom, while at the same
time increasingly nurtured and cared for by her husband, which she directly attributed to the presence of
her mental illness. Preeti described her son Pravin being
able to freely worship at the village Hindu temple, yet
being called names as he walked there and back. Experiences of exclusion and inclusion for PWMD in these
rural Indian communities are complex and entangled.
Discussion
These narratives present PMWD experiences as predominantly of exclusion yet with strands of inclusion woven
through. They exemplify understandings of exclusion as
inability to participate in economic, social, cultural and
political spheres of life [8].
These accounts of exclusion suggest there is often a
limited sense of belonging and perhaps even compromised safety for PWMD in public spaces. While most of
the people interviewed were too unwell for regular paid
employment, there was little opportunity for any participation in economic and political life. However, there was
participation in facets of social and cultural life for
PWMD such as attending community functions and
places of worship.
Mathias et al. BMC Public Health (2015) 15:446
Three dimensions of exclusion for PWMD were apparent. Firstly, community members’ negative judgements
were in some part fuelled by poor knowledge about mental illness. Narratives of neighbours accusing PWMD of
‘faking’ their illness suggests insufficient knowledge about
the nature and presentation of mental illness, and perhaps
an unwillingness to try to understand their illness experience. Poor knowledge (also described as low mental health
literacy [36]) contributing to stigma has been identified by
others in India [16,37,38]. However, it is simplistic to believe that increasing knowledge as a single intervention is
enough to reduce the stigma associated with mental illness and the associated exclusion. Negative consequences
of attributing behaviours to an ‘illness’ include increased
stigma, i.e., even when illness behaviours have abated, the
person might still suffer from the label of having ‘an illness’. In fact emerging evidence suggests that stigma reduction interventions promoting a bio-medical model of
mental illness may increase rather than decrease stigma
[39,40]. More effective stigma reduction interventions include direct contact between stigmatised and stigmatising
people, role modelling of acceptance, and involvement of
mass media [41,42].
Secondly, distancing behaviours by both community
and household members were attributed by PWMD to
the stigma associated with their mental illness. However
some of this distancing may have been related to PMWD’s
own illness behaviours (E.g. non-response to repeated
efforts at communication) leading to people feeling afraid
or unsure of how to communicate. Other reasons for distancing may have been due to a belief that PWMD were
incapable of meaningful social interactions, suggesting
again the need to increase mental health knowledge and
understanding in communities as well as the importance
of access to care, to increase social function of PWMD.
Thirdly, excluding words and behaviours by community members seemed to be greater for people with poor
self-care. The majority of PWMD in this study had
highly disabling, untreated chronic severe mental disorders. Several of those interviewed engaged in socially unacceptable behaviours such as collecting rubbish in the
streets and poor personal hygiene. Others have described
higher levels of exclusion related to socially unacceptable
behaviours [13,22]. This is a vicious circle: loneliness
and social exclusion increase the risk of poor mental
health and concomitant behavioural manifestations, which
in turn increase social exclusion [6]. In the context of
Uttar Pradesh, it is possible that PMWDs experience
greater social exclusion because they can’t access treatment for socially stigmatising behaviours. There is an urgent need to increase both awareness and access to care.
It is noteworthy that unworthiness was primarily an
experience of female PWMD in this study. Self-stigma is
the prejudice that people with mental illness turn against
Page 8 of 11
themselves [43] and negative self-regard or unworthiness
are augmented by discrimination [44]. Several Indianbased studies have described an association of higher
stigma with the female gender [15,16,22] even though
women with severe mental disorders typically have better outcomes and prognosis with fewer negative symptoms [45]. A recent large study of exclusion and mental
illness in three sites in South India found no quantitative
gender differences in the frequency of discrimination,
but qualitative differences in the way stigma manifested
in men’s and women’s lives [13]. Women’s greater vulnerability to physical and mental illness is apparent in a country where gender-based discrimination, lower income,
lower social status and associated factors of poverty, overwork, under-nutrition for women are highly prevalent
[46,47]. They sum to high levels of undervaluing and disadvantage for women in India, one of the world’s most
gender unequal countries [48].
Minimising experiences of exclusion may be a mechanism to help participants reduce the pain associated
with ostracism, and to defend neighbours to an external
observer such as the interviewer. It may indicate levels
of self-stigma, where a PWMD is more likely to minimise
or endorse discrimination by others. Acknowledging the
prejudice and negative judgements of neighbours perhaps
risks admitting the painful reality of ones’ exclusion.
Verbal violence/ ridicule and an ensuing sense of social
ostracism and public judgement were also salient experiences. The overt taunting described in this research is a
more intense form of verbal violence than simple name
calling. The impact of verbal violence leading to selfimposed social isolation of several PWMD and related
household members in this study is an important finding
reiterating that exclusion impacts significantly on the
whole household.
We have not found other reports of male offspring
with mental disorders being ‘disinherited’ in research on
exclusion and stigma of PWMD in India. Disinheritance
probably reflects the inability of the male family member
to claim his share for himself. As financial matters are
often discussed with male family members, others take
advantage of his psycho—social disability to encroach on
his rights. Disinheritance is overt financial exclusion by a
family of origin and further setback for families already
impoverished by loss of earnings if the affected adult
cannot work, as well as costs related to care seeking,
and the opportunity costs of care giving.
Accounts of physical abuse and intimate partner violence for PWMD have been widely described in HICs
[49-51] and in some LMICs [52]. It was an unexpected
theme identified in a qualitative study performed among
people with schizophrenia in South India [23] and in a
mixed-methods study in South India [13]. It is likely that
violence against people with mental illness by family
Mathias et al. BMC Public Health (2015) 15:446
members is highly prevalent across India, yet it has received insufficient mention as a human rights issue. This
violent, physical exclusion affects PMWDs health and
well-being, likely exacerbating their mental illness, and
demands urgent attention and advocacy [53].
Research on social inclusion for PWMD is almost exclusively located in HICs where there is reasonable access to care. This research underlines how critical access
to care is if a socially inclusive environment for PWMDs
is to be achieved [4]. However, even in this rural North
Indian setting, social exclusion is not absolute and this
study reports several rich accounts of social inclusion.
Baumgartner’s four key features of social inclusion are: a
sense of belonging, active participation in community
and civic life, a sense of agency and capacity to choose
to participate, and opportunity for participation [54].
These features map well onto the themes identified in
this study of opportunity for participation, a sense of belonging and support.
Building on Amartya Sen’s “Capabilities” approach to
development [55], Ware understands social inclusion as
“a process, unfolding over time, through which individuals who have been psychiatrically disabled, increasingly
develop and exercise their capacities for connectedness
and citizenship.” [9] This definition recognises that social environments must be supportive to PWMD, and
builds on a social theory of disability which locates disability in society and identifies disabling structures and
policies that exclude affected individuals.
Characteristics of receptive social environments were
evident in these rural communities in Western Uttar
Pradesh such as opportunities to visit neighbours as before the illness, visits by Brahmin priests, and practical
neighbourly support during times of illness. There was
also a clear sense that most PWMD had the opportunity
to participate in community functions.
Reduced capacity to participate is a key limitations for
people with mental illness. All eleven male PWMD in
this study were too unwell to sustain regular paid employment indicating the low functional level they were
living with. Access to care brings the possibility of relief
from stigmatising symptoms of mental illness and can
increase social and economic participation [4]. There is
an urgent need for better access to care for millions of
PWMD across India, and is important if we are to increase social participation and inclusion for PWMD.
Methodological considerations
To address methodological rigour in this study, we incorporated four strategies to promote the trustworthiness of
the findings [56]: credibility, transferability, dependability
and confirmability.
Triangulation using different methods, different sites
and analysis by different authors with different educational
Page 9 of 11
and cultural backgrounds increased the study’s credibility.
Two methodological aspects may reduce credibility:
Firstly, the involvement of researchers (KM and research
assistant) with their recognised links to an established
community health programme, may have led to respondents give socially desirable responses. Secondly, by using
data from caregivers, we risk portraying caregivers’ rather
than PMWD perceptions. Interviewing some PWMD in
the presence of caregivers also raises the possibility of social desirability bias. We minimised these concerns by
interviewing a relatively large number of people, by privileging PWMD narratives over caregiver narratives, focussing on data that triangulated with PWMD narratives, and
looking for discrepancies between PWMD and caregiver
accounts. In many aspects data saturation was reached
after reviewing the first ten interviews making it less likely
that major new themes were omitted through the minimal
participation of seven PWMD.
Transferability: We tried to maximise this by providing
detailed information of the context as well as detailed
description of the phenomena of interest to allow comparisons. Many rural settings in South Asia would share
the characteristics of the two study settings, although
the context of urban South Asia may differ in some aspects. Detailed descriptions of context, methods and
analysis enhance dependability and confirmability.
Conclusions
Social inclusion is a critical part of a nation’s human
rights framework as well as an important goal for societies that seek to promote equality and participation by
all. Promoting social inclusion for PWMD requires substantial development of access to mental health services,
general health services and employment opportunities.
NGOs, grass-root community workers and government
programmes need to work with affected communities
and families to build awareness, knowledge, skills, and
to ensure access to effective care as well as expanding
opportunities for PWMD themselves to participate as
active agents for their own well-being and livelihood.
This study presents the experiences of exclusion and
inclusion for PWMD in two rural communities in North
India. We found that PWMD can walk through their
community and encounter ridicule, discrimination and
loss of social relationships. We also found that some
PWMD continue to be trusted with responsibility for
household finances, income for the family and are able
to maintain positive social relationships. The banyan tree
typically stands sentinel in most Indian villages, a large
umbrella of branch and leaf, with shafts of sunlight filtering through. Like most facets of human experience, inclusion and exclusion are a chaotic mix of light and shadow
as complex as the dappled shade beneath a banyan tree.
Mathias et al. BMC Public Health (2015) 15:446
Abbreviations
PWMD: People with mental disorder; HIC: High income country; EHA: Emmanuel
Hospital Association; LMIC: Low middle income country.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
KM conceived of and designed the research, analysed data and wrote the
first draft. MKe and IG guided analysis and contributed to drafts of the
manuscript. MSS contributed to research design and contributed to drafts of
manuscript and MKo contributed to literature review and drafts of manuscript.
All authors read and approved the final manuscript.
Authors’ information
KM was working as mental health programme manager and technical
support to the two community mental health project teams operating in the
two locations when this research was completed. MSS, IG and MKe are
supervisors of KM’s PhD research.
Acknowledgements
We would like to especially thank the 20 people with mental disorders and
their caregivers for their participation. We also thank the Community Health
and Development programme of the Emmanuel Hospital Association for
supporting this research in multiple ways, the SHARE team led by David
Abraham at Seohara, Bijnor and the SHIFA team led by Raj Kamal at Sadoli
Kadim, Saharanpur for help with recruitment and logistical support. Thanks
also to Prerana Singh for support to data collection (research assistant), and
to Jeph Mathias and KS Jacob for review of this paper. The funding for the
costs of the research assistant was met by a small private donation.
Received: 19 January 2015 Accepted: 22 April 2015
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