CHAPTER 1

INTRODUCTION

Schizophrenia is a neurological disorder which results in hallucinations, delusions, disordered

thinking or behavior and is associated with considerable disability worldwide. Here a person’s
ability to think, act, express emotions and perceive reality are interfered. Patients might think or
feel that they are being controlled or that someone is trying to harm them. They may show child-
like behaviors, agitation or sudden anger. Performing daily activities and staying hygienic may
seem difficult. When it comes to youth, schizophrenia affects their academics and also displays
signs of social withdrawal.

About 1% of the world population is affected by this disorder and according to a study conducted
by NIMHANS, nearly 1.9% of the population in India are affected by severe mental disorders
including schizophrenia, bipolar disorders and other non-affective psychosis. Globally, it is
estimated that 450 million people are affected by mental disorders at any one time. These include
121 million people with depression, 24 million with schizophrenia and 37 million with dementia
[ CITATION WHO01 \l 1033 ]. Mental illness accounted for about 12.3 % of the global burden of
disease in 2001 and it is estimated that by 2020 unipolar depressive disorders will be the second
most important cause of disability [ CITATION Mat06 \l 1033 ]. The burden of caring for mentally
ill patients falls on the family members who provide all necessary support.

Schizophrenia is a disorder which affects not only the patients themselves, but also those around
them, especially the caregivers. The World Federation of Mental Health has assessed the burden
of the caregivers giving care to patients suffering from chronic illnesses as a global problem and
has said that caring for such patients would require continuous energy, awareness, empathy and
economic support. While attempting to create a balance between families, work and caring for
the patient, caregivers often neglect their own physical and mental wellbeing. The “caregiver
burden” concept that has been widely accepted includes all the physical, mental, social and
economic problems experienced by the caregivers of the patients with chronic mental
illness[ CITATION esr14 \l 1033 ].

Caregiving in mental illness is a demanding and exhausting activity that typically involves a
considerable amount of time, energy and money over potentially long periods of time, in tasks
that may be unpleasant or uncomfortable and could be psychologically stressful and/or
physically exhausting. This could be particularly challenging in traditional societies such as
India. The close knit family structure and lack of adequate State resources to support people with
mental illness place the onus of care on the family which is perceived to be the ‘‘natural’’
caregiver. Sociocultural expectations see the caregiving function as typically being discharged by
parents, children or the spouse and as an obligation that has morally binding undertones
[ CITATION Sta16 \l 1033 ]. Religious-cultural attributions often causally implicate supernatural
factors in the manifestation of mental illness. Patients’ symptoms are attributed to witchcraft,
ghosts, spirit intrusion, divine wrath, planetary influences and bad deeds in previous life or
karma [ CITATION Gro14 \l 1033 ] . Such beliefs frequently drive families to faith healers and
charlatans who perform elaborate (and often expensive) rituals to ‘‘cure’’ the person, and
modern psychiatric treatment is usually the last resort [CITATION Sta06 \l 1033 ] . Ignorance,
illiteracy and superstition color the perception of mental illness, and stigma and oppression
become hard realities that families encounter in everyday life.

Mental illness may cause a variety of psychosocial problems such as decreased quality of life for
the patient’s family members, as well as increased social distance for the patient and the family
caring for the patient. The family members who care for relatives with mental illness report
feeling stigmatized as a result of their association with the mentally ill [ CITATION Sse09 \l 1033 ]

Persons with schizophrenia often engage in behaviors that are frightening, troublesome,
disruptive, or at least annoying, and many relatives are obliged to control, manage, or tolerate
these behaviors [ CITATION Sha07 \l 1033 ]. Thus, psychiatric professionals often view the family
members of a patient as people of support because they can act as informants regarding the
patient and they can act as co-therapists at home [ CITATION Has02 \l 1033 ]. The family members
need to be in an optimal social and psychological state. It is reported that reduced function of one
family member contributes to the burden of other members and this in turn leads to other family
members assuming a critical attitude towards the patient [ CITATION Lar08 \l 1033 ]. Such criticism
can in some cases lead to a relapse of the patient’s illness or to the family feeling overwhelmed
by the patient’s disruptive behavior [CITATION Sse091 \t \l 1033 ].

Mental health is a major concern in India as the studies shows that one in 10 people have a
mental health condition. it is estimated that 2.5 million people have schizophrenia and
schizophrenia is a major mental health condition which not only affects the patient, but also the
one’s taking care of them. Though there is a 6.5% prevalence of serious mental health illnesses
in the country, the lack of psychiatrists and other mental health professionals comes about 77%.
According to a data, there are less than 4000 psychiatrists in India. Since there is a huge gap
between the mental health professionals available and the huge number of patients in need, it is
very important to assess the caregiver burden and bring about necessary changes in area that
requires immediate help.

Schizophrenia is a chronic and disabling psychiatric illness that posses various challenges in its
management. The shift of care giving from hospital to families have also contributed major
burden in caregivers. Burden of care is more defined by its impacts and consequences on
caregivers. Other than psychological, physical, emotional and economic impacts, burden of care
involves subtle but distressing notions such as shame, embarrassment, feelings of guilt and self
blame.

Caregiving in schizophrenia is also a demanding and exhausting activity that challenges the
physical and emotional resources of family caregivers. In traditional societies such as India, this
is further compounded by illiteracy, ignorance and religious and cultural explanations attributed
to mental illness.

There are evidences suggesting that the course of the disorder is also highly associated with
patient psychosocial factors and home atmosphere [ CITATION Wei08 \l 1033 ]. Muela and Godoy
(2001) established that there is “something” in family interaction that seems to cause a patient
relapse, and it seems to influence the course of the disease rather than the origin of it.
CHAPTER 2
 REVIEW OF LITERATURE

1) Adam Gater et al

A study on “sometimes it’s difficult to have a normal life, results from a qualitative study
exploring caregiver burden in Schizophrenia” was conducted using qualitative face to
face interviews in the US with a diverse sample of 19 English speaking caregivers of
patients with schizophrenia, who were at least moderately ill. The main aim of the study
was to explore the “subjective experiences of people with schizophrenia as a means of
understanding caregiver burden in the population”. The results from the study show that
people with schizophrenia were by large dependent on their caretakers because of which
they have reported to lack time for their own wellbeing. Caregiver burden is seen to have
frequently manifested in the physical and emotional wellbeing of the caregivers. The
study was published on 3rd April 2014 in the Journal of Schizophrenia Research and
Treatment.

2) Brain C, et al.

A study was conducted on the topic “Experiences, attitudes and perceptions of caregivers
of individuals with treatment resistant schizophrenia” and was published on August 13,
2018 in the journal BMC Psychiatry. The study aims to understand the caregiver burden
and perspectives on treatment resistant schizophrenia and to understand the perspectives
on the available treatment options for the same. The method adopted for the study was
focus group discussions where in 8 such groups were formed with informal caregivers of
patients with treatment resistant schizophrenia in 5 locations in the United States of
America. The findings from the study shows that caring for a patient with treatment
resistant schizophrenia impacted many caregivers in terms of social relationships, career
prospects and sense of freedom. In addition to this, multiple failures of medications
resulted in them feeling a sense of hopelessness.
3) Jagannathan A, et al.

A quantitative study “Predictors of family caregiver burden in schizophrenia; study from

an inpatient tertiary care hospital in India” was conducted with the aim to study the
predictors of burden experienced by the family caregivers of first admission inpatients in
schizophrenia. Interviews of caregivers of 137 inpatients with schizophrenia were taken
using the Burden Assessment schedule. He coping, the knowledge about the illness,
perceived social support, illness severity, psychopathology and disability experienced by
the patients were also assessed. The findings from the study shows that the duration of
the illness, perceived social support, psychopathology and disability were shown as
predictors of burden in the caregivers of patients with schizophrenia. The study was
published on the Asian Journal of Psychiatry, volume 8 on April 2014.

4) Natasha kate, et al.

“Relationship of caregiver burden with coping strategies, social support, psychological

morbidity and quality of life in caregivers of schizophrenia”, a quantitative study was
conducted in the Post Graduate Institute of Medical Education and Research, Chandigarh,
India. The aim of the study was to evaluate the relationship of caregiver burden with
coping strategies, psychological morbidity, social support and quality of life of caregivers
of patients with schizophrenia using Hindi Involvement Evaluation Questionnaire (IEQ) . In
addition to this, the relationship of caregiver burden with respect to clinical and socio
demographic variables were also studied. Purposive random sampling was used to recruit
100 patients with schizophrenia and their caregivers for the above study. Findings from
the study state that caregiver burden is associated with using maladaptive coping
techniques, low quality of life and psychological morbidity in caregivers. The study was
published on October 2013, in the Asian journal of Psychiatry, Volume 6.
5) Joanne Lloyd, et al.

The study titled “treatment outcomes in schizophrenia, qualitative study of the view of
caregivers” was conducted in the UK. It aimed at understanding the treatment outcomes
that the caregivers perceive to be important in the case. The method used in the study was
qualitative interview with 34 individual participants and 8 couples who were primary
caregivers of patients with schizoaffective disorder or schizophrenia. Findings from the
study shows that the caregivers expected more outcomes regarding safety, respite from
fear, pain or distress, insight, socially acceptable behavior outside the house, changes in
personality, achieving milestones, reduced stress vulnerability and several other aspects
of physical health. The study was published July 2017 on BMC Psychiatry.

6) Esra Yazici, et al.

A study “Burden on caregivers of patients with schizophrenia and related factors” was
conducted in Turkey. The aim of the study was to investigate the factors associated with
the caregiver burden experienced by the relatives of the patients suffering from
schizophrenia. For the assessment, 88 caregivers of patients suffering from the illness for
at least the past one year were selected. The Zarist Caregiver Burden Interview was the
tool used to assess caregiver burden. Clinical impression scale, the level of knowledge
about schizophrenia, socio-demographic data and global assessment of functioning were
used to evaluate the related factors. The findings from the study show caregiver burden to
be positively correlated with the age, the amount of time spent and the number of
hospitalization of the patient. No significant correlation was found between caregiver
burden and caregiver knowledge about schizophrenia. Living together with the patient
was also seen as a positive predictor. Negative correlations were found with functionality
of the patient and income. This study was published in the journal “Noro Psikiyatri
Arsivi” in 2016 june.
7) Kate. N, et al.

A study was conducted on “Care giving Appraisal in Schizophrenia, a study from India”.
The study was conducted in the Department of Psychiatry, Postgraduate Institute of
Medical Education and Research, Chandigarh, India and was published on Elsevier in
2013. The study aimed to evaluate the experiences of caregivers of patients with
schizophrenia within the framework of stress-appraisal coping model. Purposive random
sampling was used to select 100 Indian patients and their caregivers and was assessed on
Positive and Negative Symptom Scale (PANSS), family burden interview schedule,
positive aspects of care giving experience (SPACE), social support questionnaire (GHQ-
12), Involvement evaluation questionnaire (IEQ), and coping checklist. The analysis
shows that psychological morbidity is determined by the subjective experience of burden
which in turn is influenced by the time spent per day in care giving, the severity of
psychopathology and coping strategies used.

8)

A study “the dimensions of caregiver burden in schizophrenia; the role of patients’

functionality” was conducted. The aim of the study was to investigate the relationship
between schizophrenia functionalities, its symptoms and caregiver burden sub
dimensions. 92 patients with schizophrenia and their caregivers were included. Patient
functionality was assessed using the functional remission of general schizophrenia scale;
symptoms severity and type was evaluated using the positive and negative syndrome
scale and caregiver burden was evaluated using the Zarist Caregiver burden scale. The
findings from the study shows that patient’s positive symptoms were uncorrelated with
caregiver burden but negative symptoms exhibited a direct linear correlation with the
dependency and economic burden dimension. Person’s functionality exhibited a
significant a significant reverse correlation with almost all caregiver burden dimensions
except for impairment in social relationships. Highest correlation was with the
psychological tension and impairment of private life burden dimension. In conclusion, a
 small number of negative symptoms and a good level of functionality are associated with less
caregiver burden, and this correlation is more pronounced in certain burden dimensions, such as
dependency, economic burden, psychological tension and impairment of private life.

9) Ozan Pazvantoglu, et al.

“The caregiver burden of patients with schizophrenia and bipolar disorder a sectional
study” was conducted in Asha hospital, a tertiary care hospital in Hyderabad, Andhra
Pradesh.This study aims to assess the extent and pattern of burden felt by the caregivers
of patients with schizophrenia in comparison with bipolar disorder. Fifty-two patients
with schizophrenia and fifty-one patients with bipolar disorder attending the outpatient
department were assessed in the study. The burden among the caregivers was assessed
using Burden Assessment Schedule. The caregivers of schizophrenia group had
significantly higher total burden score as compared to caregivers of bipolar disorder.
Caregivers of schizophrenia experienced significantly higher burden in area of external
support, caregivers routine, and other relations.

10) Christoph Lauber, et al.

The study “Determinants of burden in caregivers of patients with exacerbating

schizophrenia” was conducted in a Psychiatric University Hospital in Zurich, Switzerland.
The aim of the study was to assess the relationship between caregiver burden and
behavioral disturbances of the affected, e.g. threats, nuisances, but also substance use
and aggression. Sixty-four relatives of schizophrenic patients were assessed by the semi-
structured “Interview for Measuring the Burden on the Family”. The findings from the
study showed that the most important predictor of burden is the burden in the
relationship between caregiver and the affected showing the changes occurring in the
relationship during acute illness. Threats, nuisances, time spent with the affected, and
burden due to restricted social life and leisure activities were additional predictors, but
 not aggression or substance abuse. The above study was published in the journal
European Psychiatry, volume 18 in October 2003.

11) Farkhondeh Sharif, e al.

A study was conducted on “Effect of a psycho-educational intervention for family

members on caregiver burdens and psychiatric symptoms in patients with schizophrenia
in Shiraz, Iran”. The study aimed to explore the effectiveness of family psycho-education
in reducing patients’ symptoms and family caregiver burden. 70 Iranian schizophrenia
patients and their caregivers were selected randomly and divided into experimental and
control groups. Patients in the experimental group received antipsychotic drug
treatment and a psycho-educational program was arranged for their caregivers. The
psycho-educational program consisted of ten 90-min sessions held during five weeks
(two sessions in each week). Each caregiver attended 10 sessions (in five weeks) At
baseline, immediately after intervention, and one month later. In the results, the case
group showed reduced symptom severity and caregiver burden both immediately after
intervention and one month later compared to the experimental group. The study was
published in the journal, BMC Psychiatry in 2012 may.

12) Jane Knock, et al.

“Burdens and difficulties experienced by caregivers of children and adolescents with

schizophrenia-spectrum disorders: a qualitative study” was conducted in Hawaii.
Participants included 10 caregivers of youth with schizophrenia-spectrum disorders
recruited from the University of Hawaii Child and Adolescent Thought Disorder
Program, in partnership with the State of Hawaii Department of Health Child and
Adolescent Mental Health Division. These were all youth receiving public mental health
services, indicating high level of need relative to other youth. The tool used for collecting
data was The Knowledge about Schizophrenia Illness (KASI) interview. The most
 common areas of general difficulties reported by caregivers were emotional burdens and
the everyday practical demands and sacrifices required in caring for their dependents.
Results also suggested high levels of burden for caregivers concerning difficulties with
mental health services. The study was published in the journal Early Interventions in
Psychiatry in the year 2011.

13) A.Jagnnathan

“A Qualitative Study On the Needs of Caregivers of Inpatients With Schizophrenia in

India” was conducted To explore the needs of caregivers of inpatients with schizophrenia
in India. Thirty caregivers of inpatients with schizophrenia participated in five focus
group discussions (FGD), where the needs of the caregivers were discussed. The FGDs
were recorded, transcribed and similar needs were grouped and ranked according to their
order of importance. In the results, the main needs that emerged were regarding:
managing the behaviour of patients; managing social-vocational problems of patients;
health issues of caregivers; education about schizophrenia; rehabilitation; and managing
sexual and marital problems of patients. The study was published in Sage Journals,
International journal of social psychiatry.

14) R. McAuliffe, et al.

“Parents' experience of living with and caring for an adult son or daughter with
schizophrenia at home in Ireland” was a qualitative study that was conducted among 6
parents who were caregivers of their own son or daughter who were suffering from
schizophrenia in Ireland. Semi‐structured, in‐depth interviews with a convenience sample
of six parents in Ireland were carried out in 2007. In the results, the study encompassed
four major themes: psychological tsunami, caring activities, coping with enduring illness
and an uncertain pathway. The following was published in the Journal of Psychiatric and
Mental Health Nursing, an International journal for researchers and practitioners.
15) Solomon Teferra, et al.

A study with the title, “Perspectives on reasons for non-adherence to medication in

persons with schizophrenia in Ethiopia: a qualitative study of patients, caregivers and
health workers” was conducted. The aim of the study was to understand the reasons for
non-adherence of anti psychotic medication in the rural African population and compare
it with the results of high income countries. Six focus group discussions and 9 in-depth
interviews were conducted to elicit perspectives on non-adherence to antipsychotic
medication. Thematic analysis was used to identify prominent perspectives. Predominant
reasons for non-adherence specific to a low-income country setting included inadequate
availability of food to counter appetite stimulation and the perceived strength of
antipsychotic medications. The vital role of the family or other social support in the
absence of a statutory social safety net was emphasized. Expectations of cure, rather than
need for continuing care, were reported to contribute to non-adherence in the longer-term.
Many of the factors associated with non-adherence in high-income countries were also
considered important in Ethiopia, including lack of insight, failure to improve with
treatment, medication side effects, substance abuse, stigma and dissatisfaction with the
attitude of the care provider. The study was published in the Journal BMC Psychiatry on
June 2013.

16) Benjamin Knudson & Adrian Coyle.

A study on “Parents' experiences of caring for sons and daughters with schizophrenia: a
qualitative analysis of coping was conducted in South east England. Participants were
recruited from two carers' support groups organized by the National Schizophrenia
Fellowship which included 8 parents. Each participant was interviewed using a semi-
structured interview format. Interviews covered their offspring's psychiatric history and
current symptoms, the nature of the parents' care-giving role, their methods of coping and
resources available to and used by them. Transcripts of these interviews were subjected to
thematic content analysis. The analysis indicated that negative symptoms represented the
 most burdensome stressor for parents and that coping strategies shifted from problem-
focused to more emotion-focused forms (such as acceptance). In relation to the resources
that were available to parents, the results indicated that support from social networks and
mental health services were generally perceived to have been lacking. However, both
informational and emotional support was available from self-help groups for
relatives/carers. The study article was published in European Journal of Counseling and
Psychotherapy on June 2010.

17) Masunga K. Iseselo et al.

A qualitative study on “The psychosocial problems of families caring for relatives with
mental illnesses and their coping strategies” was conducted in Dares Salaam, Tanzania.
The study involved four focus group discussions and 2 in-depth interviews of family
members who were caring for patient with mental illness at Temeke Municipality, Dares
Salaam. Purposive sampling procedure was used to select participants for the study.
Audio-recorded interviews in Swahili were conducted with all study participants. The
recorded interview was transcribed and qualitative content thematic analysis was used to
analyze the data. The results from the study showed that financial constraints, lack of
social support, disruption of family functioning, stigma, discrimination, and patients’
disruptive behavior emerged as the main themes in this study. Acceptance and religious
practice emerged as the major coping strategies used by family members. The above
study was published in the year 2016, May in the journal BMC Psychiatry.

18) Ernst von Kardorffa et al.

A study with the title, “Family caregiver burden in mental illnesses: The case of affective
disorders and schizophrenia” was conducted in Iran. The study was a qualitative
explorative study. The aim of this study was to explore the specific burdens experienced
by caregivers of patients with schizophrenia and affective disorders. The study used semi-
 structured interviews with 45 caregivers of patients with schizophrenia and affective
disorders. Data were analyzed by qualitative content analysis. Results showed eleven
encumbering themes from the interviews including incertitude, unawareness, emotional
burden, stigma and blame, financial burden, physical burden, restriction in routine,
disruption in routine, dissatisfaction with family, relatives, and acquaintances, troubles
with patients’ adherence to medication, and problems with health services and
governmental support. This was published in the Nordic Journal of Psychiatry In the year
2015.

19) Selwyn Stanley, Sujeetha Balakrishnan & S. Ilangovan.

The study named “Psychological distress, perceived burden and quality of life in
caregivers of persons with schizophrenia” was conducted in India using a quantitative
cross-sectional design and survey methodology to collect data from caregivers in a
hospital setting in Thanjavur. Data were collected from 75 caregivers who were caring for
a family member diagnosed (according to ICD-10) and undergoing treatment for
schizophrenia as inpatients in the Department of Psychiatry of the Medical College.
Respondents were chosen consecutively on inpatient admission based on their
willingness to participate. The study aimed to assess primary caregivers of persons with
schizophrenia in terms of their perceived burden, manifestation of psychological distress
and quality of life (QOL). Standardized instruments were used to collect data from
patients and their caregivers. The results showed that high perceived burden and lower
QOL were seen in the majority of caregivers. They also manifested high levels of anxiety
and depression. Patient characteristics such as age, gender, symptoms and the duration of
illness did not influence the perceived burden of caregivers, while positive and negative
symptoms and the duration of illness were correlated with their QOL. The article was
published in the journal of mental health in 2017.
20) Dutta M, Spoorthy MS, Patel S, Agarwala N.

“Factors responsible for delay in treatment seeking in patients with psychosis: A

qualitative study” was conducted in Raipur, Chhattisgarh, India in the year 2019. The
study aimed to understand the various reasons responsible for treatment delay in patients
with psychosis using a cross sectional study. 25 subjects were selected by purposive
sampling and their family members were interviewed. Qualitative analysis was carried
out to identify various factors. The results showed reasons for treatment delay to be at
several levels like illness related, patient related, treatment related, and family related
factors. However the most common themes among these were unawareness of illness,
explanatory models of illness, stigma and financial constraints. Other themes like relation
of symptoms with premorbid personality, life events, and absence of paternal support
were also unfolded in the current study. The study was published in the Indian Journal of
Psychiatry in 2019.

21) Anvar Sadath, D. Muralidhar, Shivarama Varambally, Justin P. Jose & B. N. Gangadhar

A qualitative study was conducted in India to understand “Caregiving and Help Seeking
in First Episode Psychosis”. This is a part of a larger study which has been reviewed and
approved by NIMHANS ethics committee. The study recruited 11 carers of patients with
First episode psychosis for this qualitative study using In-depth interviews. The study
was conducted between 15th May to 30th September 2013, and the carers were recruited
from the in-patient and out-patient psychiatric units of National Institute of Mental Health
and Neuro-Sciences. (NIMHANS), which is a tertiary mental health care Centre located
in Bangalore, India. The major themes explored were sequence of help seeking and faith-
healing practices, explanatory model of illness, illness management strategies, financial
burden, perceived stress and stigma. Carers experienced shock, disbelief and anxiety
about the unexpected behavioural changes in patients during the initial phase. The
common pathway to ‘help seeking’ was faith-healing. It resulted in substantial delays in
accessing psychiatric care and drain on family finances. Carers perceived themselves as
 vulnerable and helpless when patients became violent or demanding, refused to take
medicines, experienced sleep disturbance, and remained idle and suspicious. Further,
carers were hesitant to seek help due to their stigma attached to mental illness. Carers’
poor understanding and high stigma caused substantial delays in seeking psychiatric
treatment. Caregivers experienced high levels of distress and difficulties. The above
article was published in the Journal of Psychosocial Rehabilitation and Mental Health.

22) José Javier Navarro Pérez & Ángela Carbonell Marqués

A study was conducted on the topic “Family burden, social support and community
health in caregivers of people with serious mental disorder” to understand the factors that
can help in improving caregiver’s wellbeing. The study was conducted in Spain between
January and July 2016. It was a cross-sectional descriptive study with a sample of 107
caregivers from seven public institutions and an association of relatives and patients was
evaluated by identifying their burden and the contributing factors for reduction of these
levels through the Zarit Burden Inventory instrument. The results showed that the main
contributions refer to caregivers’ active participation in associative dynamics, their
attendance at psycho educational activities and territorial connection to metropolitan
areas with community resources decrease their level of burden. The following study was
published as an article in the Journal of School of Nursing in the year 2017.

23) Farshid Shamsaei, Fatemeh Cheraghi , Ravanbakhsh Esmaeilli

A study with the title “The Family Challenge of Caring for the Chronically Mentally Ill:
A Phenomenological Study” was conducted with the aim to understand and explore the
challenges with which the family caregivers of individuals with chronic mental illness
have to contend. Sixteen caregivers were identified as participants who lived with the
care recipient, provided ongoing support, and maintained regular contact. Purposive
sampling was used to recruit informal caregivers identified as the family members of
 chronically mentally ill individuals residing in Farshchian Psychiatry Hospital in
Hamadan, Iran. Data were collected through qualitative interviews and diaries. The
results from the study highlighted 4 main themes, namely stress and emotional distress,
need for education and information, socioeconomic effects and support, and physical
strain. Families experience frustrations when providing support and care to their mentally
ill relatives. They, therefore, need appropriate support and intervention by mental health
services. The above study was published in Iranian Journal of Psychiatry and Medical
sciences in the year 2013.

24) Sujit Kumar Naik, Sanjay Pattanayak,1 Chandra Shekhar Gupta,1 and Raman Deep
Pattanayak

“Help-seeking Behaviors among Caregivers of Schizophrenia and other Psychotic

Patients” was a Hospital-based Study conducted in two geographically and culturally
distinct Indian cities. The study aimed to describe and compare the help-seeking
behaviors among caregivers of psychotic patients visiting psychiatric clinics at two
distinct cities of India. The cross-sectional exploratory study included 50 caregivers of
patients with a DSM-IV TR diagnosis of schizophrenia and other psychotic disorders,
visiting psychiatric out-patient departments of VIMHANS, New Delhi, and CIMS,
Bilaspur, Chhattisgarh. The data were analyzed using SPSS version 17.0. Supernatural
forces were held responsible by 40% of the Bilaspur sample in contrast to 8% in New
Delhi sample. Faith-healers were initial contacts for 56% and 64% of sample,
respectively, at New Delhi and Bilaspur. Faith-healers followed by a psychiatrist formed
the commonest pathway of care at both centers (32% and 36%, respectively). The sample
at New Delhi spent significantly more money and traveled greater distances for faith-
healers during the course of illness. Two-thirds of sample in New Delhi and one-third at
Bilaspur were aware of the nearby psychiatrist at the time of initial help seeking;
however, only 28% and 12%, respectively, chose psychiatrist as an initial contact. The
New Delhi sample reported a fear of medication adverse effects and stigma as perceived
disadvantages of psychiatric help. Of the total, 16% caregivers at New Delhi and 32% at
 Bilaspur center reported an intention to continue with faith-healing practices alongside
psychiatric care. The study was published in The Indian Journal of Psychological
Medicine in the year 2012.

25) Mirja Koschorke, et al.

A study was conducted to understand “Experiences of stigma and discrimination faced by

family caregivers of people with schizophrenia in India”. Between November 2009 and
October 2010, data on caregiver stigma and functional outcomes were collected from a
sample of 282 PLS–caregivers. In addition, 36 in-depth-interviews were conducted with
caregivers. Quantitative findings indicate that ‘high caregiver stigma’ was reported by a
significant minority of caregivers (21%) and that many felt uncomfortable to disclose
their family member's condition (45%). Caregiver stigma was independently associated
with higher levels of positive symptoms of schizophrenia, higher levels of disability,
younger PLS age, household education at secondary school level and research site.
Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative
data illustrate the various ways in which stigma affected the lives of family caregivers
and reveal relevant links between caregiver-stigma related themes (‘others finding out’,
‘negative reactions’ and ‘negative feelings and views about the self’) and other themes in
the data. The study was conducted in India and it was published in the Journal of Social
Science and Medicine in year 2017.

26) Munish Aggarwal, et al.

“Experience of Caregiving in Schizophrenia” is a quantitative study conducted in India

with the aim to understand the both negative and positive consequences of the disorder
which affects the caregiver. Fifty caregivers of patients with diagnosis of schizophrenia
were taken as participants and were assessed on Experience of Caregiving Inventory
(ECI), Coping Checklist (CCL), Social Support Questionnaire (SSQ) and General Health
 Questionnaire-12 (GHQ-12). Patients were assessed on Positive and Negative Syndrome
Scale (PANSS). The results from the study showed Maximum ECI score in negative
domains of handling the difficult behavior followed by negative symptoms, loss and
dependency. Significant positive correlation was seen between total positive ECI score
and the level of education of patients and caregivers. Regression analysis showed that use
of problem-focused coping, seeking social support as a coping strategy and education of
caregivers explained 30.6% of the variance of ECI positive score. The study showed that
education of caregivers, coping strategies used by the caregivers and available social
support influence the final appraisal of caregiving. The above was published as an article
in The International Journal of Social Psychiatry in the year 2009.

27) Madhumitha Balaji, et al.

A study titled “Outcomes that matter: A qualitative study with persons with schizophrenia
and their primary caregivers in India” was conducted to explore and define outcomes
desired by persons with schizophrenia and their primary caregivers from their
perspectives. In-depth interviews were held with 32 persons with schizophrenia and 38
primary caregivers presenting for care at one rural and one semi-urban site in India.
Participants were asked what changes they desired in the lives of persons affected by the
illness and benefits they expected from treatment. Data was analyzed using thematic and
content analysis. The results showed that eleven outcomes were desired by both groups:
symptom control; employment/education; social functioning; activity; fulfillment of
duties and responsibilities; independent functioning; cognitive ability; management
without medication; reduced side-effects; self-care; and self-determination. Social
functioning, employment/education and activity were the most important outcomes for
both groups; symptom control and cognitive ability were more important to persons with
schizophrenia while independent functioning and fulfillment of duties were more
important to caregivers. This study was published in the Asian Journal of Psychiatry in
the year 2012.
28) Santosh Loganathan, R. Srinivasa Murthy

A study was conducted on the topic “Living with schizophrenia in India: Gender
perspectives”. This qualitative study explores gender issues from a sociocultural
perspective related to stigma among people suffering from schizophrenia in India. Stigma
experiences were assessed by conducting semi structured interviews with 200 patients
attending urban or rural psychiatry clinics. The resulting narratives were examined by
thematic content analysis. Men with schizophrenia reported being unmarried, hid their
illness in job applications and from others, and experienced ridicule and shame. They
reported that their experience of stigma was most acute at their places of employment.
Women reported experiences of stigma in relation to marriage, pregnancy, and childbirth.
Both men and women revealed specific cultural myths about their illnesses and described
how these had negatively affected their lives. The study was published in Journal of
transcultural Psychiatry in the year 2011.

29) Sayani Paul

“Stigma, discrimination and human rights violations of people living with schizophrenia
in India: Implications for social work practice” was a study that was conducted in India
using the qualitative design to understand whether the mental health professionals are
doing enough in this area to improve the conditions of the people living with
schizophrenia. Using in-depth and focused group interviews, this study explores multiple
perspectives on stigma, discrimination and human rights violations of people living with
schizophrenia (PLS) within their web of relationships in the city of Mumbai, India.
Thematic analysis shows that abusive experiences at home, stigma associated with mental
health services and barriers to meaningful employment contribute to human rights
violations. Implications for strengthening the role of mental health professionals
including social workers to promote, protect and actualize the rights of PLS are stressed.
 Using purposive and snowball sampling, study participants were selected from
psychiatric clinics, day care centers, peer networks and Schizophrenia Support Groups.
The study was published in the Journal of Social work in Mental Health in the year 2018.

30) Sayani Paul

“Responses to stigma-related stressors: a qualitative inquiry into the lives of people living
with schizophrenia in India” is a qualitative study based in India conducted to understand
the stigma related stressors that affects people living with schizophrenia. In the present
study, the author attempts to investigate coping responses of people living with
schizophrenia (PLS) to stigma-related stressors in an urban metropolis in Western India.
Employing qualitative methods, in-depth interviews were conducted to collect data from
20 patients living with schizophrenia, attending psychiatric clinics, peer support groups
and mental health agencies across the city of Mumbai, India. Thematic analysis suggested
five main domains of stigma-related stressors: (1) ‘illness’ labeling; (2) labeling, violence
and abuse; (3) rejection; (4) job loss; and (5) anticipatory discrimination. Participants
responded to stigma stressors by being either helpless or resistant, but there were
complex, multi-level factors, such as gender, employment, familial roles and
responsibilities, support system, living arrangements, spiritual affiliation and past
experiences of discrimination, influencing those responses. The study was published in
the International Journal of Culture and Mental Health in the year 2015.
CHAPTER 3
 RESEARCH METHODOLOGY

According to John.W.Best, Research is a systematic and objective analysis and recording of

controlled observations that may lead to the development of generalizations, principles, theories
and concepts, resulting in prediction of seeing and possibly ultimate control of events.

Research methodology is a science of studying how research is conducted systematically. In this

field the researcher explains himself with the different steps generally taken to study a research
problem. Hence, the scientific approach which is adopted for conducting a research is called
methodology [ CITATION DrS11 \l 1033 ]

Aim of the study: to understand the experiences of caregivers of individuals with

schizophrenia.

Objectives:

1) To understand the experiences of caregivers of patients starting from the initial phases of
illness discovery to the present
2) Understand their coping mechanisms
3) To explore the stigma and discrimination faced by caregivers as well as patients with
schizophrenia
4) To find out the caregiver’s needs and expectation from the treatment.

Study design: qualitative study with exploratory design

Area of study: the research will be carried out in a Mental Health Care facility in Wayanad,
kerala

Study universe: Caregivers of patients with schizophrenia

Study period: the study will be carried out from October 2019 to march 2020.

Sample size: 10 caregivers from a mental health care centre in wayanad

Sampling : purposive sampling

Inclusion

Tools : semi structured interview guide

Data collection: data collection will be done using semi structured interview guide

Data analysis: thematic analysis

Inclusion criteria:

 Caregivers who have been in role for at least the past 5 years.
 caregivers from the age group 18-50 will be taken
 in-patients of the hospital who came after relapse

Exclusion criteria:

 Less than five years of care giving experience will not be included

Ethical consideration: Informed consent will be taken. Personal information given by the
participants will be kept highly confidential, Sensitive questions will be asked with utmost care.
Ethical committee clearance will be taken

Limitations: only pertained to caregivers taking treatment from one mental health care hospital
in wayanad so results can’t be generalized
QUESTIONS

What did you think when you first observed your family member behaving differently?

What did you think was the reason for the illness?

What led to the treatment of the patient and where?

What were the reasons for seeking treatment now?

What kind of support you think is needed for you and the family?

What do you find difficult to deal with when you take care of the patient?

How did you manage to get treatment for your relative? Who helped you?

How do you feel when you give care to your ill family member? How does care giving affect
your everyday life?

Personal experiences of being mistreated rejected and violated.

How many years have it been

Share your experience

How have you been able to manage?

Challenges

Social support that you receive

What are the various problems that you face?