A QUALITATIVE STUDY TO ASSESS THE PSYCHOSOCIAL

PROBLEMS FACED BY PRIMARY CARETAKERS OF

MENTALLY ILL PERSON IN SELECTED
HOSPITAL OF DELHI

By

SARITA UPADHYAYA

HOLY FAMILY COLLEGE OF NURSING

UNIVERSITY OF DELHI, NEW DELHI

MAY 2019
A QUALITATIVE STUDY TO ASSESS THE PSYCHOSOCIAL
PROBLEMS FACED BY PRIMARY CARETAKERS OF
MENTALLY ILL PERSON IN SELECTED
HOSPITAL OF DELHI

BY
Ms. SARITA UPADHYAYA

HOLY FAMILY COLLEGE OF NURSING

UNIVERSITY OF DELHI,

MAY 2019
 CERTIFICATE
Certified that this is the bonafide work of Ms. SARITA UPADHYAYA
at
Holy Family College of Nursing

Submitted in Partial Fulfilment of the Requirement for

the Degree of Master of Science in Nursing from the

University of Delhi

_________________________
Roll No. 2468
Prof.(Dr.) Raminder Kalra
M.Sc.Nursing
R.N.,R.M.,M.N.,PhD
Semester IV
Principal
Practical Paper No. IV
Holy Family College Of Nursing
Dissertation
Okhla Road, New Delhi

NEW DELHI, MAY 2019

A QUALITATIVE STUDY TO ASSESS THE PSYCHOSOCIAL
PROBLEMS FACED BY PRIMARY CARETAKERS OF
MENTALLY ILL PERSON IN SELECTED
HOSPITAL OF DELHI

By

Ms. SARITA UPADHYAYA

ADVISOR: ___________________ ADVISOR:______________

Prof. (Dr.) Raminder Kalra M. Jibanlata Devi
R.N.R.M.,M.N.,PhD. R.N., R. M.,M.N.
Principal Assistant Professor
Holy Family College of Nursing Holy Family College of Nursing
New Delhi 110025 New Delhi 110025

SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT

FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING AT
THE HOLY FAMILY COLLEGE OF NURSING

UNIVERSITY OF DELHI,
MAY 2019
 "Dedicated to my
loving parents and
my siblings"
 ACKNOWLEDGEMENT

First and foremost praises and thanks to the Almighty God for His blessings and
His enlightening force behind all my efforts in making this study a success.
This study has been accomplished under the expert guidance of Prof. (Dr.)
Raminder Kalra, Principal Holy Family College of Nursing and Mrs. Jibanlata
Devi, Assistant Professor, Holy Family College of Nursing. I express my sincere
gratitude to both of them for their constant valuable guidance, constructive
criticism, encouragement and interest in completing the study.
I express my regards and respect to Prof. (Dr.) Raminder Kalra for her unending
support and motivating me to take the Qualitative study as a challenge and her
guidance which provided me the enthusiasm to complete this research project. I
consider myself very fortunate to be associated with her as a student. Also,
thankful to her valuable feedback which enabled me to complete the research
study.
I also take this opportunity to thank Director Rev. Fr. George PA and Dr. S. Warsi,
Medical Superintendent, Holy Family Hospital for granting ethical approval for
the conduct of the study.
I am obliged to all faculty and non faculty members and all the experts who
validated the tool of the study. Also I am grateful to the head of the department of
psychiatry and ethical committee of VIMHANS Hospital, New Delhi for granting
permission to conduct this study in their hospital. My words of thanks to Mr.
Sujeet, Nurse Educator, Department of Psychiatry, VIMHANS Hospital, Mrs.
Geetu, Nurse Educator,
Department of Psychiatry, VIMHANS Hospital and Ms. Kritiza, Clinical
Psychologist,VIMHANS Hospital, for facilitating me during the data collection
procedure.
I express my sincere thanks and gratitude to all the experts who spent their
valuable time for the validation of tools and to all the faculty members of college
teaching and non teaching staff for their encouragement and useful suggestions in
completion of this study.
I thank my friends who were there for me in all ups and downs. I owe a great
thanks to all my study participants in the study, for being such an amazing group
of people and willingly contributing to the study; I could not have done this
without you. Thanks to everyone who helped me in the process of data collection
for being so kind and helpful.
I express my sincere thank to my valuable librarians of Holy Family College of
Nursing without whom this thesis would not be completed so systematically. I
thank Mrs. Molsi Abraham for her continuous help and prayers, Ms.Farha Sultan
for her encouragement and Sr.Lucy Joseph and Mrs.Lubna Vardha for their help.
I dedicate this research study to my father Shree Ram Upadhyaya, my mother
Mrs. Uma Devi Adhikari, my brothers Mr. Basu Dav Upadhyaya and Ananda
Adhikari and my loving sister Shanti Upadhyaya. I am fortunate to have them in
my life. I would not have reached anywhere without their immense support and
guidance.
I thank my uncle Mr. Rajkumar Khanna for his support and continuous
encouragement throughout my academic journey.
My heartfelt thanks to Mr. Bharat for his unforgettable support and continuous
encouragement throughout my academic journey and always help me to achieve
the goal.
My sincere thanks and acknowledgement are extended to all my well wishers, and
all others who assisted, guided and cooperated directly or indirectly for the
completion of the present study.

Ms. SARITA UPADHYAYA

 ABSTRACT

A Qualitative study to assess the psychosocial problems faced by primary caretakers of

mentally ill person in selected hospital of Delhi was conducted. The problem faced by
primary caretakers of mentally ill person assessed was under two sections i.e.
Psychological and Social. The research questions assessed were: What are the
psychological experiences of a primary caretaker of a mentally ill person? What are the
social experiences of primary caretaker of a mentally ill person? , How has the diagnosis
of the mental illness of a family member affected the day to day life of a primary
caretaker? and What are the challenges faced in day-to-day life as a primary caretaker of
a family member with mental illness? A Qualitative approach with phenomenological
design was implemented; a semi-structured interview schedule was developed and was
validated by eleven experts from different fields. Participants were selected through
purposive sampling technique. Their participation in the study was on voluntary basis and
an informed consent was taken from the caretakers of mentally ill person. Data was
collected using semi-structured interview schedule and interviews were recorded in an
audio-recorder. They were transcribed and translated from Hindi to English. Data was
analysed using thematic analysis and subsequent themes, sub-themes and categories
emerged. Themes emerged were emotional instability, stressful life, increased anxiety,
feeling of sadness, depression, anger, tension, frustration, guilt and shame, palpitation,
restlessness and pain, lack of sleep and appetite, suicidal ideation. The participants
expressed less social support, stigmatization, decreased social interaction, labelling in the
society and also having apprehensions about marriage and marital life of their family
member with mental illness. They also expressed their inability to attend social
function/Gathering due to lack of time. Diagnosis of mental illness of family member
affected the day-to-day life of the primary care takers and disrupted their personal and
occupational life and led to financial crisis. Some of the challenges faced by the primary
caretakers of the mentally ill person include: Challenges of care-giving; coping with
treatment and hospitalization; disrupted communication; and feeling of stagnation in their
life. The family members expressed that the treatment facilities, counseling, family and
social support helped them to cope with the stress and enabled them to provide care to
their mentally ill family member. Based on the themes and subthemes, the conceptual
framework for the present study was developed.
 ABBREVIATIONS

QQL - Quality of Life

WHO - World Health Organisation

DSM-V - Diagnostic and Statistical Manual V

MDs - Mental Disorders

BAD/BPAD - Bipolar Affective Disorder

MDD - Major Depressive Disorder

RIFT - Range of Impaired Functioning Tool

SMI - Severe Mental Illness

DAS - Disability Assessment Schedule

QOLI - Quality Of Life Interview

CDS - Collaborative Depression Study

NIMH - National Institute of Mental Health

LIFE - Longitudinal Interval Follow-up Evaluation

OLQ - Objective Life Quality

OPD - Out Patient Department

IPD - Inpatient Department

 TABLE OF CONTENT

CHAPTER CONTENT PAGE. NO.

I INTRODUCTION

 Background 1
 Need for the study 7
 Problem statement 12
 Research Questions 12
 Assumptions 12
 Delimitations 12
 Operational definitions 13
 Summary 14

 Organization of the report 14

II REVIEW OF LITERATURE

 Literature related to psychological problems of 16

Primary caretakers of mentally ill person

 Literature related to social problems of primary caretakers 23

Of mentally ill person

 Summary 32
CHAPTER CONTENT PAGE. NO.

III METHODOLOGY

 Research Approach 33
 Research Design 35
 Setting of the study 40
 Population 40
 Sample 41
 Sampling technique 41
 Sample size 42
 Inclusion and exclusion criteria 42
 Development and description of tool 43
 Content validity of tool 45
 Tool translation 46
 Ethical consideration 46
 Pilot study 48
 Data collection procedure 49
 Problems faced in data collection 51
 Plan for data analysis 51
 Standards for evaluation of the qualitative studies 52

 Summary 55
CHAPTER CONTENT PAGE. NO.

IV EXPRESSION FROM PRIMARY CARETAKERS OF 56

MENTALLY ILL PERSON: ANALYSIS OF THEIR

VERBATISM

 Section I : Demographic profile of 63

primary caretakers, mentally ill person and
History Related to Mental Illness
 Section II: Themes, sub-themes and categories 69
emerged in the study
 Conceptual framework 109
 Summary 110

V DISCUSSION

 Summary of the study 111

 Discussion 115
 Conclusion 127
 Implications of the study 128
 Limitations 131
 Recommendations 131

REFERENCES

APPENDICES
 LIST OF TABLES

TABLE NO. TITLE PAGE.NO

1 Frequency and percentage distribution of Demographic 63

profile of the primary caretakers of mentally ill

2 Frequency and percentage distribution of Demographic 65

profile of the mentally ill person

3 Frequency and percentage distribution of History Related 67

to Mental Illness

4 Themes emerged in the study 69

4(a) Psychological experiences of caretakers of mentally ill, 70

its themes, sub-themes and category

4(b) Social experiences of primary caretakers of mentally ill person 79

4(c) Effect of diagnosis of mental illness of family member on 87

primary caretakers’ day-to-day life

4(d) Challenges faced by the primary care takers of family 96

member with mental illness in day-to-day life

 LIST OF FIGURES

FIGURE NO. TITLE PAGE. NO.

1. Schematic diagram representing Research Design of the study 39

2. Conceptual Framework 109

 LIST OF APPENDICES

S.NO. APPENDIX

I Approval for Ethical Committee

II Letter seeking permission for conducting Pilot Study

III Letter seeking permission for conducting Final Study

IV Letter seeking Expert's opinion and suggestions for content validation of

the tool

V Criteria rating scale for tool validation

VI List of Experts

VII Participant’s Information Sheet

(a) English
(b) Hindi

VIII Participant’s Consent Form

(a) English
(b) Hindi

IX Semi-structured Interview Schedule

(a) English
(b) Hindi

X Certificate from the Editor