FELT NEED

FOR HOME BASED CARE FOR PERSONS WITH SEVERE MENTAL

ILLNESS

DISSERTATION SUBMITTED TO

NATIONAL INSTITUTE OF MENTAL HEALTH AND NEURO SCIENCES

(AN INSTITUTE OF NATIONAL IMPORTANCE)

IN PARTIAL FULFILLMENT OF

M.PHIL DEGREE IN PSYCHIATRIC SOCIAL WORK

Submitted by

K.DEEPIKA

DEPARTMENT OF PSYCHIATRIC SOCIAL WORK

NATIONAL INSTITUTE OF MENTAL HEALTH AND NEURO SCIENCES

(AN INSTITUTE OF NATIONAL IMPORTANCE)

BANGALORE-560 029

2020
 DECLARATION

I hereby declare that this study, “Felt need for home based care for persons with severe

mental illness” has been conducted by me at the National Institute of Mental Health and Neuro

Sciences, Bengaluru in the year 2018-2020 under the guidance of Dr. Gobinda Majhi, Associate

Professor, Department of Psychiatric Social Work, NIMHANS, Bengaluru.

I also declare that no part of the study has been previously published or submitted in part or full

to any other university. References borrowed from other sources have been duly acknowledged.

Date: Ms. K. DEEPIKA

Place:
ACKNOWLEDGEMENT

I would like to take this chance to show my gratitude to each and everyone who had contributed in many
ways to complete this thesis effectively.

I am extremely grateful and I would like express my sincere thanks to my guide Dr. Gobinda Majhi,
Associate Professor, Department of Psychiatric Social Work for his meaningful guidance, immense
support, freedom in work and motivation throughout this process.

I would like to extent my deep gratitude to my co-guide Dr. Vijaya Kumar. K.G, Assistant professor,
Department of Psychiatry for accepting to co-guide my research with his expertise. I also like to
acknowledge him for his continuous support and valuable inputs to shape this study.

I am thankful to Former HOD Dr. A Thirumoorthy, Professor and former Head of the Department and Dr
R. Dhansekara Pandian, Professor and Head of the Department, Department of Psychiatric Social Work
for their encouragement and constant support.

My sincere thanks to all the respondents for spending their time with me to gather the data without those
this study wouldn’t be complete and successful. I also like to thank treating team of Adult Psychiatry unit-
1 for rendering support to collect the research data. And I would like to thank Mr. Durai, Statiscian for
clarifying my queries and helping with the statistical tests.

My heartfelt gratitude to my mentors Dr. Kimneihat Vaiphei, Assistant Professor of Psychiatric Social
Work and Dr. Kavitha V Jangam, Associate Professor of Psychiatric Social Work for their emotional
support, guidance and motivation during this time. I am also immensely grateful to Junior Consultants
Dr. Vinit Kumar Singh, Mr. Arun Marath and Mr. Sreekanth for being source of support, inspiration and
for enlightening my thought process. They are very special to me during this academic life.

I like to convey my special thanks to my friends in NIMHANS Ms. Vindya Rai, Dr. Divya, Dr. Nandini,
Dr. Ramya, Dr. Aasharya, Ms. Cicil, Ms. Asha, Ms. Shruthi, Ms. Vaishnavi for their positivity, motivation
and also for being available during my difficult times. My hearty thanks to my fellow classmates Mr.
Daniel Selva, Mr. Junaid, Ms. Yater, Ms. Maria, Mr. Raj kumar, Mr. Aadhil, Mr. Pandi, Ms. Jayesree
and Ms. Aadharsa for their support and motivation during these two years. Most importantly, my
heartfelt gratitude and appreciation to my parents and sister for being pillar of support without whom all
of my efforts would be incomplete and I would like to dedicate my thesis whole-heartedly for them.

K. Deepika
 TABLE OF CONTENTS

S. No Chapters Page No

I INTRODUCTION 1

II REVIEW OF LITERATURE 6

III METHODOLOGY 17

IV RESULTS 24

V DISCUSSION 47

VI SUMMARY AND CONCLUSION 57

V11 REFERENCES 65

VIII APPENDICES i
 LIST OF TABLES

Table Title of the tables Page No

No

4.4.1 Barriers to access treatment 30

4.4.2 Availability of Social Support 31

4.4.3 Emotional Support 32

4.4.4 Financial Support and difficulties 33

4.4.5 Caregiver’s knowledge about patient’s illness and the psychiatric services 34

4.4.6 Caregiver’s difficulties and their need for home treatment 35

4.5.1 Association between number of admissions and need for home 36

training for patient to manage themselves

4.5.2 37
Association between number of admissions and worsening of
caregiver’s health condition
4.5.3 37
Association between diagnosis Vs need for training to improve
attention, problem solving and decision making and job training for
patient at home
4.5.4 Association between caregiver’s sex and their neeed for home 38
training to manage patient

4.5.5 Association between annual family income and taken loan 39

4.5.6 Association between family income and need for pharmacotherapy 40

at home

4.5.7 Association between annual family income and job training for 40
patient

4.5.8 Association between caregiver’s age and difficulty to bring patient 41

during symptomatic period

4.5.9 Association between caregiver’s age and worsening of caregiver’s 42

health while accompanying the patient
4.5.10 Association between caregiver’s age and their health affected due to 43
caregiving

4.5.11 Association between caregiver’s age and felt lonely and isolated due 43
to patient’s illness

4.5.12 Association between caregiver’s age and spending more money to 44

avail hospital treatment (Travel, food, accommodation and
medication)

4.6.1 Difference between barriers in accessing treatment and family type 45

4.6.2 Difference between need for home based care and duration of illness 46
 LIST OF FIGURES

Figure No Title of the figure Page No

4.1.1 Caregiver’s age 26

4.1.2 Caregiver’s sex 26

4.1.3 Caregiver’s marital status 26

4.1.4 Caregiver’s education 26

4.1.5 Annual Family Income 27

4.1.6 Family type 27

4.1.7 Caregiver’s relationship with patient 27

4.2.1 Patient’s age 28

4.2.2 Patient’s education 28

4.3.1 Diagnosis of the patient 28

4.3.2 No of IP admissions 28

4.3.3 Duration of illness 29

4.3.4 Treatment compliance 29

4.3.5 Clinical Global Impression Score 29

 CHAPTER I
INTRODUCTION

1
 CHAPTER I

INTRODUCTION

According to the 2011 census, more than 70% of the population of India lives in villages. The

mental health care services and infrastructure for the public sector are not only deficient but also

limited to larger cities and hospitals (Chandramouli, C & General, R, 2011). As per National

Mental Health Survey (2015-16), the lifetime prevalence of mental disorders in the Indian

population is 13.7% in which schizophrenia and other psychoses (0.64%), mood disorders

(5.6%) and neurotic or stress-related disorders (6.93%). Research finding suggests that there is a

huge treatment gap still exists for all types of mental health problems regardless of the efforts in

enhancing mental health care delivery across the country.

1.1 Home-based care for persons with severe mental illness:

Home care (also referred to as social care, domiciliary care, or in-home care) is supportive care

delivered at home. This type of care may be provided by authorized healthcare professionals who

offer medical treatment needs or by certified caregivers who render daily support to assure

the activities of daily living (ADLs) are met. Home care services are advantageous specifically

due to the monetary savings and shorter hospital stays for mental illness (Ford et al., 2001; Tsai,

Chen, & Yin, 2005). Additionally, this home care facility for mental illness can endorse

independence and furnish contact with family members and significant others (Shu, Lung, Lu,

Chase, & Pan, 2001; Yang, Hsieh, Wu, Tzung, & Chen, 1999).

2
1.2. Deinstitutionalization:

The deinstitutionalization movement simply changes the locus of care. Deinstitutionalization is

the replacement of long-stay psychiatric hospitals and alternatives care of the mentally ill people

based in the community. Research has indicated that persons with serve mental illness have

greater treatment satisfaction with their life circumstances as compared to inside psychiatric

hospitals. It has been observed that persons with severe mental illness have been hospitalized for

long and institutionalized for passivity and they have been barred from potential social and

vocational functioning and also enjoy their freedom (Wing JK, Brown. G, 1979).

Mental health services for persons with severe mental illness are well accessible with

community-based services than with the conventional hospital-based psychiatric treatment.

(Thornicroft & Tansella, 2003). Community-related services are equated with higher consumer

fulfillment and improved met needs. Moreover, they can foster enhanced stability of care and

suppleness of services, creating the potential to recognize and treat more frequent early relapses,

and to improve treatment adherence (Thornicroft & Tansella, 2003; Killaspy, 2007

1.3. Home-based care treatment as a service user friendly:

Home-based treatment which is an alternative to the hospital treatment is always being an

intensive and integrated approach to treat the severe psychiatric conditions (Schmidt, et al.

2006). The following are the reasons which offer benefits to the service users:

i) It is a family-focused approach and addresses the caregiver’s responsibility

ii) It enables the caregiver to actively involved in the treatment which is easier to attain

improvement over other treatment methods.

3
 iii) It provides therapists and family members to have a better therapeutic alliance

which lessens the chances of relapse from the treatment and favors improved

outcomes.

iv) It attempts to change the symptomatic behavior in the natural environment over the

inpatient hospital setting.

v) It is cost-effective compared to the inpatient hospital settings.

1.4. In-home Carers’ support:

Someone who is receiving treatment should always feel safe and trust instincts on your services.

If someone with a severe mental illness ever feels threatened or unsafe, then treatment efficacy

may substantially decrease. Family members can promote the quality and safety of mental health

services if they are involved in such services. They can enhance emotional, physical demands

and mitigate financial expenses as a carer for someone with a mental illness. These are very

important components while treating persons with mental illness. The family member can play as

co-therapist and extent different forms of support and helping in taking medicines correctly,

monitor side effects, engaging day-to-day activities, and involving mentally persons in

productive activities. Most importantly such activities are not only required but also help in the

speedy recovery and good prognosis. Therefore, there is an advantage of joint family systems

that rendered care and aid support to manage the negative repercussions of disease and mental

illness inside their family (Patel, et al. 2011).

1.5. Cost-effectiveness:

About the financial aspect, there is an immense level of burden due to the treatment cost for a

person with a mental illness. For which families have to spend around INR 1000 – 1500 per
4
month predominately for treatment and travel to access psychiatric hospital care. Along with

this, mental illness affects the family members and caregivers of the individuals due to the

disability caused by it. They had gone absent for 10-20 working days in a given quarter of the

year to provide care of mentally ill persons (National Mental Health Survey of India, 2015-16).

5
 CHAPTER II
REVIEW OF LITERATURE

6
 CHAPTER –II

REVIEW OF LITERATURE

2.1 Introduction

The literature review is a critical analysis of previous academic studies relevant to the specific

research area in a meticulous way. This chapter targets to give a broad collection of research

studies, journal articles and sample surveys in areas of mental illness, the burden of care, barriers

to access the treatments and home treatment. Available online sources like Google Scholar,

PubMed and Springer were for identifying the research studies, journal articles and sample

surveys, etc. These collected resources were segregated and depicted into five categories:

A. Home-based care for persons with severe mental illness

B. Perception of service users and their carers about Home-based care

C. Effects of providing Home-based care and

D. Barriers in providing home treatment for severe mental illness

E. Home care treatment and other treatment methods

2.2 Home-based care for persons with severe mental illness:

A comparative study by Meehan, et al. (2017) focused to identify the pathways of care and

features of the psychiatric service user’s in hospitals as well as community-oriented residential

rehabilitation programs. Data was collected from 240 service users of residential rehabilitation

units funded by the public sector using a survey method at Queensland in 2013. This covered

demographic features, information on clinical data, and service user’s functioning measures. The

7
results of this study were found to have significant differences of services users in hospital and

community based residential services concerning age, duration of stay, the status of

guardianship, functioning, family communication and violence risks. Intense and complex

problems occur more in service users of the hospital-based kind.

Schmidt, et al. (2005)’s intervention based comparative study aimed to inspect the home

treatment effectiveness in children and adolescent groups with different psychiatric conditions.

70 samples were recruited for home treatment as a replacement for hospital treatment.

Psychiatric nurses (38 of them) and medical students (32 of them) have carried out the

intervention under the expertise of child psychiatrists. A structured interview was used to cover

the multiple aspects of the respondents. Comparison of pre- and post-treatment showed

significant improvement of symptoms, illness severity and psychosocial regulation after 3

months of home-based interventions. When the comparison was done post-treatment between

inpatient and home-based treatment; inpatient treatment was found to be more efficient.

However, home treatment was consistently effective in a higher number of patients compared to

the effects maintained after hospital treatment. This concludes that home-based treatment is an

efficient treatment program with the therapist’s skills, motivation and adherence to patients and

parents.

Mötteli, et al. (2020)’s study directed to examine patients with which diagnosis benefits from the

home treatment most. The comparative method was used to gather data retrospectively from the

two home treatment services in Switzerland using patient’s medical data in these two units

between July 2016 and December 2018. Binary regression analysis was used to find out which

diagnosis patients benefits from home treatment replaced by hospital program. This study

8
comprised of 408 samples in which 68% were female belongs to an average age of 43 years. In

both home treatment settings, the classical patients were female with middle age mainly

diagnosed with affective disorder. Home treatment replacement of hospital program was found

successful in half of the treated patients in terms of treatment duration and episodes. The

regression analysis showed that patients with less severity of symptoms and who have employed

profits from home treatment. This study finding highlighted that acute psychiatric patients with

social support and certain functional level would benefit from home treatment in the view of

effective replacement of hospital program.

2.3 Perception of service users and carers about Home-based care

Goldsack, et al. (2005)’s qualitative study focused to use the narratives of consumers, their

families, and service provides on innovative home-based treatment services which utilized

recovery as its core principle. The study has used a narrative and thematic approach mainly

focused on service user’s experience on home treatment in Wellington, Australia. Thirty

interviews were conducted in 12 service users; 6 family members; 5 home treatment team

members and 4 allied professionals. Service users and their family members had expressed the

positive experience of home treatment service and they welcomed this new method of delivering

psychiatric services. Similarly, the Home treatment team and allied professionals mentioned that

it enabled them to provide effective services to the needy.

A qualitative study by Magnusson & Lützén (1999) was designed to identify and investigate

virtuous decision making in the home care of persons with long-term mental illness. Focused

groups were used for the data collection in which three focus groups were conducted within three

months by using the principle of theoretical sampling. Psychiatric nurses and mental health
9
workers who had experienced in community mental health and psychiatric sector in Sweden

were recruited for the study. The central themes emerged out of the focused groups were

intruding in the home of the patient; experiencing fluctuating boundaries; respecting or

transgressing the right to privacy and situating mutual vulnerability which had alarmed the ethical

symbolic meaning of ‘home’. Lastly, this mirrored the mental health worker’s struggle between

their professional and moral role which they see as puzzling.

Tung & Hu (2010)’s descriptive and cross-sectional study explored the elements affecting family

caregivers ’satisfaction with home care services for the mentally ill, assessed the satisfaction

with home care services for the mentally ill, evaluated the possibility of continuous use of home

care and recommended home care services to others based on the level of satisfaction of family

caregivers. The researchers have administered an anonymous self-report questionnaire with 75

primary family caregivers caring for a mentally ill (family members who had received home care

within the previous year). Along with this, demographic questionnaire, Family Caregiver’s

Satisfaction Survey Questionnaire (FCSSQ) and Family Caregivers’ Experience and Attitudes

Questionnaire (FCEAQ) were utilized to gather the required data essential for the study. The

findings imply that the satisfaction of family caregivers was significantly associated with the age

of the caregiver, their age, support from relatives to help them during the weekends and

weekdays, the quantity of time spent in caregiving each week and their emotional state on having

a mentally ill family member. Furthermore, caregivers who experienced greater satisfaction

levels with the home care services had used the services twice as possible as those who had a

lower level of satisfaction which denotes the prominence of caregiver’s satisfaction on their

continuation of the home care services.

10
2.4 Effects of providing home-based care

A naturalistic observational study conducted by Mötteli, et al. (2018) aimed to look at the

effectiveness and utilization of newly employed home treatment services in Switzerland. For this

study, they have recruited 201 patients with acute severe mental illness who received home

treatment from June 2016 to December 2017. Also, outcomes of the treatment were compared

with two other groups of the inpatient population. The results indicated that the home treatment

group comprised of female patients who were diagnosed with affective disorders having better

educational status than the other two inpatient groups. The duration of treatment for patients who

received home treatment was lengthier and better post-treatment scores in the domains such as

the Global Assessment of Functioning Scale. Lastly, the current study insisted on the aspects of

symptoms improvement, improved functionality, reduction of hospital stays and readmissions

would be attained by effective home treatment for persons with severe acute psychiatric

conditions. However, it emphasized that home treatment would be beneficial only for a specific

group of patients especially for individuals with affective disorders.

A randomized control study by Mujien, et al. (1992) aimed to compare the efficacy of home-

based treatment with hospital treatment for severe psychiatric conditions. This study was

conducted with 189 patients aged between 18 and 64 in the Southwark of London. The

researcher had randomized 92 patients of home-based treatment and 97 patients of hospital

treatment. Results of this revealed that home treatment reduced hospital stay and admissions in

with 80% of the patients. Though home-based treatment showed improvement in a few aspects

of the patient, they needed support in terms of finance, housing and work. It pointed out that

home-based treatment is intensive, leads to a low attrition rate in the treatment and provides

11
benefits compared to hospital care. Moreover, it highlighted the importance of the advanced

level of training for mental health professionals.

A follow-up study by Murthy, et al. (2005) directed to measure the expenses and outcomes of a

community-based outreach program in rural Karnataka. Cases of drug-naive or untreated

schizophrenia were found by an outreach team in eight rural communities and investigators have

adopted a non-controlled prospective evaluation over one and a half years. Pharmacological and

psychosocial support was delivered to them, over one and a half years they were periodically

evaluated once in 3 months. Out of 100 recruited cases of untreated schizophrenia, 28% were not

given antipsychotic medication and the rest of 72% had not taken medication for the last 6

months. After the first follow-up assessment, there observed reduced scores in psychotic

symptoms, family burden, and disability. Escalations in treatment and community outreach

expenses over the follow-up duration were supplemented by a drop in the costs of family

caregiving time and informal-care sector visits. Ultimately, community outreach services in rural

areas of resource-limited countries for persons with schizophrenia can make significant

advantages to the patients as well as their families.

A systematic review by burns T, et al. (2001) intended to find out the effectiveness of home

treatment compared to normal services to lessen hospital stay and to determine the viability of

home treatment services. Cochrane methodology was used for reviewing the studies. In the case

of two compared studies, non-randomized studies were also encompassed. Follow-up

questionnaires and service characterization questionnaires were used for the studies.

Comparative analysis and experimental service analysis were used as a method of outcome

measure. The shreds of evidence imply that home treatment reduces hospitalization and less
12
costly than that of hospital treatment. However, it is less efficient compared to community-based

services. Also, the study emphasized the need for economic evaluation to improve home care

services.

Chatterjee, et al. (2014)’s randomized controlled trial aimed to compare the efficacy of a

collaborative community-based care intervention with standard facility-based care. The

researcher had used the multi-centered, parallel-group and RCT at three sites (four sub-districts

of Kancheepuram district, Tamil Nadu; Goa; and Satara District in Maharashtra) in India.

Patients who belong to 16-60 years of age (282 participants) with a main diagnosis of

schizophrenia according to the ICD-10 and DSM criteria were included for the study. Positive

and negative syndrome scale (PANSS) and the Indian disability evaluation and assessment scale

(IDEAS) were administered to assess the change in symptoms and disabilities over the last 12

months. The result indicated the combined community-based care with facility-based care

intervention was fairly more effective than facility-based care, particularly for decreasing the

disability and symptoms of psychosis.

2.5 Barriers in providing Home-based treatment for severe mental illness

A qualitative study by Khalifeh, H. et al.,(2009) intended to explore the preferences of treatment,

experiences and needs of dependent children mothers who were provided alternative home

treatment for acute severe psychiatric conditions. The study was conducted using semi-structured

interviews with 18 mothers and their five children treated by four of crisis resolution teams in

London. Participants experienced difficulties in handling the physical need of the children, felt

emotionally distant, struggled to adequately parent their children and to protect the children from

13
distress secondary to symptoms. Home treatment was preferred by most of the mothers due to

better safety and care parallel to this they also preferred hospital admission it decreased their

sense of responsibility and distress. Furthermore, it highlighted that child needs to be taken into

consideration while planning for home treatment for psychiatric conditions.

A review study by Reifler & Bruce (2014) intended to give information on successful programs

providing Home-based services to older adults who have psychiatric conditions. Peer review

articles were selected which narratives about ten programs by the American Geriatric Psychiatric

Association. These ten programs served for about 50 to 300 cases per year with the annual

budget of $ 30,000-$1,250,000 from sources such as philanthropy and public funds. Several

other similar time-honored successful programs function as a model for communities though

home-based services that have logistic and monetary challenges.

Chisholm, et al. (2000)’s research study aimed to validate cost-effective techniques in the

estimation of mental health care schemes in low-income countries. This study was a part of the

evaluative research project of the Institute of Psychiatry, Rawalpindi (Pakistan) and National

Institute of Mental Health and Neuro Sciences, Bangalore (India) The community survey design

was adopted in four rural populations who were screened for psychiatric illness. The standard

primary care centers of Jigani (Bangalore) and Lehtrar (Rawalpindi), mental health training

centers of Sakalwara (Bangalore) and Taxila (Rawalpindi) were the study sites. Three out of four

areas implied reduced financial expenses with the improvements in symptoms, disability and

quality of life over a certain period. Also, the study revealed the possibility of financial inquiry

of mental health care in low-income countries.

14
2.6 Home treatment and other treatment methods:

A multisite randomized controlled study conducted by Hughes, et.al .(2000) directed to evaluate

the impact of Team Managed Homed Based Primary Care on health-related quality of life,

functional status, care satisfaction and care costs. The study was conducted from 1994 to 1998 in

16 veteran affairs medical centers with Home Based Primary care, for which 1966 patients with a

mean age of 70 with 2 or more functional impairment were recruited. Patient and caregiver

Health-Related Quality of Life, functional status of patients, the burden of caregiver, hospital

readmissions and care costs for 12 months were the outcome measures of this study. It found

Team Managed Home Based Primary Care improved Health-Related quality of life in caregiver,

caregiver burden, care satisfaction and reduced readmissions. However, it didn’t replace other

care methods.

Audini, et al. (1994)’s comparative study directed to explore the outcome of randomized

controlled withdrawal of home-based care over the outcome of continuing home-based care with

severe mentally ill patients. Two phases of randomized trial and follow-up were done with the

patients aged between 18 and 64 in an inner catchment area, London. For this purpose, duration

and number of hospital admissions, separate scores of clinical and societal function and

satisfaction of patients and relatives were measured using the valid instruments. This studied

implied that caregivers and patients had attained satisfaction with home-based care but it is

uncertain about which aspects of the clinical and social were helpful.

A retrospective cohort study by Parker, et al. (2020) directed to promote the independence and

community functioning of persons with severe psychiatric conditions. Data was collected from

501 service users in 5 community care units from 2005 to 2014 in Queensland of Australia. The
15
health of the Nation Outcome Scale instrument was used and changes in the group, as well as

individual level, were assessed during pre-admission and post-discharge periods. 54.7% of the

service users established reliable improvement in social and mental health functioning, reduction

in a hospital stay and involuntary admissions. Community care units depicted consistent

improvement in outcome measures of many service users. This study concludes that service

users with declined social and mental functioning and the longer stay in community care units

tend to make improvements in the major functional domains.

Dean, et al.(1993)’s study focused to decide the factors inducing the successful outcome of

community treatment for severe acute mental disorders. Patients who were hospitalized or

treated at home for over two years duration (1987-1989) in the electoral ward of Sparkbrook,

Birmingham was chosen for this study. Using this, 99 patients with severe acute mental disorders

from 16-65 has been recruited. The results implied that 65 patients were managed only with

home treatment; 34 required hospital admissions. Treatment location was significantly

determined by socio-demographic characteristics of the patient and referral characteristics and

physical violence during the episode were significantly associated with admission. Finally, this

study highlighted that home treatment is fruitful and viable only for acute mental disorders.

16
 CHAPTER III

METHODOLOGY

17
 CHAPTER III

METHODOLOGY

3.1 Introduction

The methodology of the research study aids as a guide for research progress. This chapter covers

the need for the study, aims, objectives, objectives, objectives, research design, target population,

sampling technique, data collection methods and tools used for the study.

3.2 Need for the study

People with severe mental illness require long term treatment and care, it is one of the major

challenges for mental health care professionals and caregivers. The health care system is a

complex entity: particularly in India, there is a lack of resources, personnel and services which

further complicates the system. This state of affairs further deprives people of quality mental

health care. As mental illness is a debilitating condition which affect the functioning of daily

living, social interaction and impairment in decision making which requires continuous

treatment. But most often the available services are expensive and cumbersome. The absence of

insight into the illness in severe mental illness often makes it very difficult for the caregivers to

bring the patient to the hospital even if they could afford it. It leads to nonadherence with

medications and relapse or worsening of the symptoms. Hence, caregivers of the mentally ill

undergo distress and burden. These issues magnified when the individual or the family lives in a

remote or rural area as they encounter barriers in accessing transportation, health literacy,

workforce and stigma associated with mental illness. In this regard, appropriate health care

service must be available which is affordable to all sections of society regardless of age, sex,

social status, geographical area and ethnicity. There is a need for improvement in health care

service delivery, it can be achieved by redirecting the existing resources towards services that are

18
reasonable, cost-effective, promising outcomes and benefits large population. Therefore,

emphasis should be given to the delivery of mental health services through home-based care.

There is a gap in the literature concerning home-based care where we can explain the success

and challenges in home-based care. Therefore, the current study has been selected to understand

the felt need for home-based care and identity the barrier to access home-based care among

caregivers of persons with severe mental illness.

3.3 Aim of the study

To study the felt need of the Home-setting care among caregivers of persons with severe mental

illness

3.4 Objectives

 To study the factors which demand home-setting care for persons with mental illness

 To examine the barriers faced by the caregivers to seek psychiatric hospital-based treatment.

 To assess and compare the felt need services among the study population

3.5 Operational definitions:

Felt Need: Felt-needs are changes deemed necessary by people to correct the deficiencies they

perceive in their community

Home-based care: ‘Home Treatment’ or ‘Home-based care’ is defined as a service that

enables the patient to be treated out of the hospital as far as possible and to stay in their usual

place of residence.

Caregiver: Any family member who is caring for the patient and is above 18 years of age.

Severe mental illness: Schizophrenia and Bipolar Affective Disorder is considered a Severe

mental illness for this study

19
3.6 Research Method and Design:

The researcher had adopted a quantitative method with cross-sectional descriptive research

design for the study. This aided the researcher to collect numerical and descriptive data to

explore the relationship and difference between the variables to form statistical information on

barriers encountered by caregivers and felt needs for home-based care for caregivers of severely

mentally ill patients.

3.7 Universe:

Caregivers of persons with severe mental illness seeking treatment from the psychiatric

department at NIMHANS.

3.8 Population and sampling technique:

Caregivers of persons with Schizophrenia and BPAD seeking treatment on both in-patient and

outpatient basis from NIMHANS. A purposive sampling method was used to recruits the

participants. The researcher had approached 66 caregivers out of which 60 had expressed

willingness to participate in the study.

3.9 Inclusion criteria:

● Caregivers of persons diagnosed with Schizophrenia or BPAD as per ICD10

● Caregivers and patients who are above 18 years of age.

● Caregivers who can speak English, Kannada and Tamil

3.10 Exclusion criteria:

● Caregivers of persons with other mental disorders

● Caregivers of persons with a comorbid developmental disorder and organic brain

disorders

20
 ● Caregivers who haven’t given consent to participate in the study

3.11 Tools of data collection:

 Socio-Demographic Data Sheet

The socio-demographic data sheet was prepared by the researcher to gather personal data of the

caregivers as well as the patient’s details. It encompasses details on specific socio-demographic

variables relating to the caregiver and the patient such as age, sex, education, occupation,

relationship with the patient, family income, type of family, etc., also on clinical information

about the diagnosis of the patient, treatment compliance and other related data. This consists of

both open-ended and closed-ended questions to get the relevant details.

 Semi-Structured Interview schedule on barriers to access treatment, caregiver’s

Knowledge and their needs for home-based care

Based on the objectives of the study, the semi-structured interview schedule was framed. The

schedule consists of both open-ended and closed-ended questions which were focused under the

domains such as accessing the treatment, availability of social support, emotional support and

financial support, knowledge about the illness of the patient and the needs of the caregivers in

terms of illness pursue and home treatment.

 Clinical global impression Scale (Rockville,1976):

This instrument was administered to identify the symptom severity, functional improvement of

the patient. It measures three items such as severity of illness, global improvement and Efficacy

21
index and all these are categorized as marked improvement, moderate improvement, minimal

improvement and unchanged or worse.

3.12 Tool validation:

The semi-structured interview schedule framed by the researcher was given to experts for

validation of the tool. The experts are from various departments such as Psychiatry, Psychiatric

Social Work, Psychiatric Nursing and Psychology:

This tool was revised based on the expert's inputs before the process of data collection and a pilot

study was conducted with around 5 caregivers to check and understand the feasibility of the

study.

3.13 Data analysis:

Statistical Package For Social Sciences software (SPSS - 21) was utilized for the data analysis,

descriptive and inferential statistics were employed based on the study’s objective. The analyzed

data has been presented in the form of diagrams and tables. The categorical variables were

computed with statistical tests such as the Chi-square test and Mann Whitney U test to identify

the association and difference between the dependent and independent variables.

3.14 Study procedure :

 Informed consent was taken from the participants for the study.

 The purpose of the study had been explained to the participants before collecting the data.

 The data was collected using a semi-structured interview schedule.

22
  Statistical analysis of data has been done with the help of statistician’s inputs.

3.15 Ethical considerations

1. Ethical clearance was obtained from the NIMHANS ethics committee to carry out this

study

2. The participants were explained about the purpose and nature of the study.

3. Informed consent has been taken from the participants before proceeding with the study.

They were assured that any information they disclose would be only for the study

purpose and maintained confidentiality.

4. The participants were free to drop out of the study at any given point of time without

assigning any explanations for the same.

5. The participation in the study was purely voluntary no financial commitments

6. An appropriate referral was made whenever it was found essential.

23
CHAPTER IV

RESULTS

24
 CHAPTER –IV

RESULTS

For this study, 66 caregivers were recruited from the NIMHANS inpatient and outpatient

services out of which 60 participants expressed willingness to participate in the study and data

was collected from them. The collected data was analyzed, interpreted and represented using

diagrams and tables. These tables and diagrams denote the frequency and the percentage of the

participants responded under each category. Moreover, this chapter comprises of statistical

methods used for the analysis. Chi-square test was used to find out the association between the

variables and Mann Whitney was employed to compare the difference between the variables

under this. The obtained results are categorized and illustrated in the following manner :

I- Caregiver’s socio-demographic profile

II- Patient’s socio-demographic profile

III- Clinical variables

IV- Caregiver’s responses

V- Statistical methods :

i) Chi-square test

ii) Mann Whitney U test

25
4.1 Caregiver’s Socio-Demographic Profile

Figure No:4.1.1 Figure No:4.1.2

Figure number 1 and 2 represents the age and sex of the caregiver respectively.

Figure No:4.1.3 Figure No: 4.1.4

Figure number 3 indicates the caregiver’s marital status and figure number 4 shows the education

of the caregiver.
26
 Figure No:4.1.5 Figure No: 4.1.6

Figure number 5 and 6 indicates the family annual income and type of family.

Figure No:4.1.7

This figure infers the caregiver’s relationship with the patient.

27
4.2. PATIENT’S SOCIO-DEMOGRAPHIC DETAILS

Figure No :4.2.1
Figure No:4.2.2

Figure number 8 and 9 denote age and education of the patient respectively.

4.3 CLINICAL VARIABLES

Figure No:4.3.1 Figure No:4.3.2

Figure number 10 and 11 represents the patient diagnosis and Number of IP admissions

respectively.
28
 Figure No:4.3.3 Figure No: 4.3.4

Figure number 12 implies the patient’s duration of illness and figure number 13 represents the

treatment compliance.

Figure No:4.3.5

Figure number 14 represents the clinical global impression score of the patients.
29
4.4 CAREGIVER’S RESPONSES

Table No: 4.4.1 Barriers to access treatment

S. No Barriers to access treatment Yes No

N (%) N (%)

Traveling Difficulty
`1. `46 76.7 14 23.3

Encountered Barriers
2. 39 65 21 35

Frequent Leaves
3. 26 43.3 34 56.7

Difficulty to bring the patient

4. 54 90 6 10

5. Worsening of caregiver’s health 34 56.7 26 43.3

The above table reveals that 76.7 % of the caregivers had faced traveling difficulty to seek

psychiatric hospital treatment while accompanying the patient. 65% of the caregivers mentioned

that they have encountered barriers in accessing the hospital-based psychiatric treatment and the

majority of the caregivers felt difficulty to bring the patient for hospital treatment during the

symptomatic period. Along with this, 56.7 % of the caregiver’s health condition had worsened

when they accompanied the patient for psychiatric hospital treatment.

30
 Table No: 4.4.2 Availability of Social Support

S. No Social Support Yes No

N (%) N (%)

Support to access treatment by family

`1. 49 81.3 11 18.7

Support to bring the patient

2. 40 66.7 20 33.3

Availability of other family members

3. 38 63.3 22 36.7

Social support by family members

4. 42 70 18 30
Social support by Friend
5. 14 23.3 46 76.7

This table depicts the availability of social support to the caregivers, 81.3% of the caregivers

have said that they get support from family members to access the treatment and 66.7% of them

usually get support from family members to bring the patient for psychiatric hospital treatment.

Likewise, 63.3% of the caregivers have other family members to take care of the patient in their

absence and 70% of the caregiver’s family members provide adequate support. However, 76.7%

of the caregivers didn’t get social support from their friends.

31
 Table No: 4.4.3 Emotional Support

S. No Yes No
Emotional Support
N (%) N (%)

Having someone to trust, talk too

frankly and share feelings
`1. 46 76.7 14 23.3

Adequate emotional support by

family members
2.. 35 58.3 25 41.7

Emotional support by Friend

3. 17 28.3 43 71.7

The above table represents the presence of emotional support to the caregivers, in this 76.7% of

the caregivers have someone to trust, talk too frankly and share feelings with. 58.3 % of the

caregiver’s family members provide adequate emotional support and 71.7% of them were not

provided adequate emotional support by their friends.

32
 Table No: 4.4.4 Financial Support and difficulties

S. No Financial Support Yes No

N (%) N (%)

Spending more money

(Travel, Food, and Accommodation)
`1. 46 76.7 14 23.3

2. Financial support by family members 37 61.7 23 38.3

Financial support by friend

3. 6 10 54 90

Taken loan
5. 29 51.7 31 48.3

Earning member
6. 38 63.3 22 36.7
Efficacy of work affected
7. 29 51.7 31 48.3

The above table indicates the information on financial support. It shows that 76.7% of the

caregivers felt that they are spending more money ( includes travel, food and accommodation) to

avail the hospital treatment and 61.7% of them were adequate getting financial support by a

family member. However, 90% of the caregiver reported that they haven't received any financial

support from friends. More than half of the caregiver(51.7%) had taken a loan to manage the

treatment for the patient’s psychiatric illness. 63.3% and 51.7% of the caregivers are the earning

member in the family and their efficacy of work affected due to the patient's illness respectively.

33
 Table No:4.4.5 Caregiver’s knowledge about patient’s illness and the psychiatric services

S. No Yes No
Knowledge
N (%) N (%)

Affected by chronic psychiatric illness

`1. `41 68.3 19 31.7

Cured with medication or any other

treatment modalities
2. 32 53.3 28 46.7

Medication for a little longer period

3. 36 60 40 24

Aware of DMHP
4. 19 31.7 41 68.3

Accessed DMHP services

5. 13 21.7 47 78.3

Aware of any home-based management

strategies
6. 6 10 54 90

Aware of government welfare benefits

7. 5 8.3 55 91.7

Table no: 5 indicates the knowledge of the caregiver about the patient’s illness. 68.3% of

the caregivers are aware that the patient got affected by chronic illness. More than half of the

caregivers (53.3%) feel that patient illness can be cured with medication or other treatment

modalities and also 60% of them feel that patients need medication for a little longer period.

Likewise, 68.3% of the respondents didn’t aware of the DMHP services and 78.3% of them

34
haven’t accessed DMHP services. The majority of the respondents, 90% and 91.7% were not

aware of any home-based management strategies and government welfare benefits respectively.

Table no: 4.4.6 Caregiver’s difficulties and their need for home treatment

S. No Yes No
Perceived Needs
N (%) N (%)

Difficulty to manage patient during

symptom
`1. `56 93.3 4 6.7

Got training to manage patient

2. 2 3.3 58 98.7

Need home training

3. 45 75 15 25

Pharmacotherapy in the home setting

4. 50 83.3 10 16.7

Home training for the patient to manage

themselves
5. 38 63.3 22 36.7

Training to improve attention, problem-

6. solving and decision making
24 40 36 60

Training in job perspective

7. 34 56.7 26 43.3

This table implies the perceived needs of the caregiver. Most of the caregivers ( 93.3% )felt

difficult to manage patients during the symptomatic time. 75% of the caregivers felt they need

home training to manage the illness of the patient and most of them (98.7%) of them haven’t

35
received any training to manage the patient illness. Similarly, 78.3% of the caregivers didn’t

access any DMHP services.

In terms of home-based treatment, majority of the caregivers (83.3%) need pharmacotherapy for

the patient at their home and 63.3% of them feel that patient need the training to manage himself

/herself at home. But 60 % of the caregivers reported that the patient doesn’t need the training to

improve his attention, problem-solving and decision-making skills. However, 56.7% of the

caregivers felt the patient need job training at their home.

4.5 Chi-square tests

Table No:4.5.1 Association between the number of admissions and home training for the
patient to manage themselves

Need home training Chi-square P-Value

Variables No Yes value
(n=22) (n=38)

0 -2 20 (44.4%) 25(55.6%)
times
No of
admissions 3-5 4.689 0.03*
2 (13.3%) 13 (86.7%)
times

This table shows the P-value of compared variables is 0.03*< 0.05. So, there is a significant

association between the number of admissions and the need for home training for patients to

manage themselves at home.

36
 Table No: 4.5.2 Association between the number of admissions and worsening of
caregiver’s health condition

Worsening of caregiver’s Chi-square P-Value

Variables health value
No Yes
(n=26) (n=34)

0 -2 22 (48.9%) 23 (51.1%)
times

No of 4 (26.7%) 11 (73.3%) 2.262 0.13

3-5
admissions times

The above table implies that there is no significant association between the number of

admissions and the worsening of the caregiver’s health (P-value is 0.13> 0.05).

Table No: 4.5.3 Association between diagnosis Vs need for training to improve attention,
problem-solving and decision making and job training for the patient at home

Training to improve Chi-square P-Value

attention, problem-solving value
Variables and decision making
No Yes
(n=36) (n=24)

21 (51.2%) 20 (48.8%)
Schizophrenia
Diagnosis 4.519 0.04*

15 (78.9%) 4 (21.1%)
BPAD

37
 Job Training Chi-square P-Value
value
Variables No Yes
(n=26) (n=34)

Schizophrenia 15 (36.6%) 26 (63.4%)

Diagnosis 2.401 0.12

11 (57.9%) 8 (42.1%)
BPAD

This table denotes that there is a significant association between the diagnosis of the patient and

caregiver’s need for home training to improve attention, problem-solving and decision making (

P-value = 0.04*< 0.05). As the P-value between the diagnosis of the patient and caregiver’s need

for job training for patients at home is 0.12 which is greater than 0.05, there is no significant

association between these two variables.

Table No: 4.5.4 Association between caregiver’s sex and their need for home training to
manage patient

Need for home training to Chi-square P-Value

manage patient value
Variables No Yes
(n=15) (n=45)

Male 10 (40%) 15 (60%)

Caregiver’s sex 5.143 0.02*

Female
5(14.3%) 30 (85.3%)

38
In the above table, p value is between the two variable is 0.02* > 0.05 hence it shows there is a

significant association between sex of the caregiver and their need for home training to manage

the patient .

Table No: 4.5.5 Association between annual family income and taken loan

Chi-square P-Value
Taken loan value
Variables No Yes
(n=31) (n=29)
11(45.8%) 13 (54.2%)
Upto 25,000

Annual 4(23.5%) 13 (76.5%)

family 25,000-50,000
13.92 0.00*
income 8 (88.9%) 1 (11.1%)
50,000-1 Lakh

8 (80%) 2 (20%)
1Lakh -1,50,000

This table indicates that there is a significant association between annual family income and loan

taken by the caregiver to handle the treatment expenditure. Since the P-value of the variables is

0.00*<0.05.

39
Table No: 4.5.6 Association between family income and need for pharmacotherapy at home

Chi-square P-Value
Need for Pharmacotherapy value
Variables at home
No (n=10) Yes(n=50)

1 (4.2%) 23 (95.8%)
Upto 25,000

Family 2 (11.8%) 15(88.2%)

income 25,000-50,000
9.274 0.02*
4 (44.4%) 5 (55.6%)
50,000-1 Lakh

3 (30%) 7 (70%)
1Lakh -1,50,000

The p-value in the above table is 0.02*<0.05 which indicates there is a significant association

between family income and caregiver’s need for pharmacotherapy to the patient at home.

Table No: 4.5.7 Association between annual family income and job training for patient

Job training for patient Chi-square P-Value

value
Variables No Yes
(n=26) (n=34)
8 (33.3%) 16 (66.7%)
Upto 25,000

Annual 5 (29.4%) 12 (70.6%)

family 25,000-50,000
7.211 0.06
income 6 (66.7%) 3 (33.3%)
50,000-1 Lakh

7 (70%) 3 (30%)
1Lakh -1,50,000

40
In this above table, the p-value is 0.06 which is greater than 0.05 this implies there is no

significant association between the annual family income and caregiver’s need for job training

for patients at home.

Table No: 4.5.8 Association between caregiver’s age and difficulty to bring patient during

the symptomatic period

Difficulty to bring patient Chi-square P-Value

during the symptomatic value
Variables period
No Yes
(n=6) (n=54)
Young adults 5 (20%) 20 (80%)

Caregiver’s Middle age 0 26 (100%) 5.679 0.05

age
Old age 1 (11.1%) 8 (88.9%)

This table shows that there is no significant association between the caregiver’s age and

difficulty to bring the patient for treatment during the symptomatic period.

41
Table No: 4.5.9 Association between caregiver’s age and worsening of caregiver’s health

while accompanying the patient

Worsening of caregivers Chi-square P-Value

health while accompanying value
Variables the patient
No Yes
(n=26) (n=34)
Young adults 19 (76%) 6 (24%)

Caregiver’s Middle age 5 (19.2%) 21 (80.8%) 18.64 0.00*

age
Old age 2 (22.2%) 7 (77.8%)

This table represents that the P-value is 0.00*< 0.05. Hence, there is a significant association

between the age of the caregiver and the worsening of the caregiver’s health while

accompanying the patient for hospital treatment.

42
Table No: 4.5.10 Association between caregiver’s age and their health affected due to

caregiving

Health affected due to Chi-square P-Value

caregiving value
Variables No Yes
(n=11) (n=49)
Young adults 10 (40%) 15 (60%)

Caregiver’s Middle age 0 26 (100%) 13.98 0.00*

age
Old age 1 (11.1%) 8 (88.9%)

The P-value in the above table is 0.00*< 0.05 which shows that there is a significant association

between the caregiver’s age and their health affected due to caregiving.

Table No: 4.5.11 Association between caregiver’s age and felt lonely and isolated due to

patient’s illness

Felt lonely and isolated due Chi-square P-Value

to the patient’s illness value
Variables No Yes
(n=17) (n=43)
Young adults 12 (48%) 13 (52%)

Caregiver’s Middle age 4 (15.4%) 8 (84.6%) 8.224 0.01*

age
Old age 1 (11.1%) 8 (88.9%)

43
This table shows the p-value is 0.01*< 0.05 which implies there is a significant association

between the caregiver’s age and their feeling loneliness and isolated due to the patient’s illness

Table No: 4.5.12 Association between caregiver’s age and spending more money to avail

hospital treatment (Travel, food, accommodation and medication)

Spending more money to avail Chi-square P-Value

hospital treatment (Travel, value
Variables food and accommodation )
No Yes
(n=14) (n=46)
Young 11 (44%) 14 (56%)
adults
Caregiver’s Middle age 1 (3.8%) 25 (96.2%) 11.49 0.00*
age
Old age 2 (22.2%) 7 (77.8%)

The above table shows that there is a significant association between the age of the caregiver and

spending more money ( food, travel and accommodation) to avail the hospital treatment( P value

is 0.00*<0.05).

44
4.6 Mann Whitney U test

Table No: 4.6.1 Difference between barriers in accessing treatment and family type

Score

Barriers in accessing Median U P-value

treatment
( Q3-Q1)

Family type

Joint 2(4-2)

(N=19) 215.0 0.01*

Nuclear 4(5-2.7)

(N=38)

To perform this test, all the responses under barrier in accessing treatment domains are clubbed

into one. Along with this, there are three groups in the family type such as nuclear family, joint

family and extended family, the third group in the family type i.e: extended family was excluded

as the samples in the extended family group were insufficient. The P-Value is 0.01*< 0.05 which

indicates that there is a significant difference within the barrier in accessing treatment across the

type of family variable.

45
Table No: 4.6.2 Difference between the need for home-based care and duration of illness

Need for home-based Score U P-value

care
Median (Q3-Q1)

Duration of illness

1-10 years 3(4-10

11-20 years 3(4-1) 229.5 0.06

Similar to the previous table, caregiver’s responses under the need for home-based care domains

were combined into one. Also, the third group of the duration of illness (illness duration - above

20 years ) was eliminated due to the low number of samples under this category. The above table

shows that the P-value is 0.79 >0.05 which denotes there is no significant difference within the

need for home-based care across the duration of illness groups.

46
CHAPTER V

DISCUSSION

47
 CHAPTER V

DISCUSSION

5.1 Caregivers:

In this study, 43.3% of the caregiver belongs to the middle age group which is between

40-60 years and 58.3% of them were female in which 31.7% are mothers. It may be because, in a

traditional Indian family, the mother's role has traditionally been taking care of household

chores. Mothers are increasingly taking on multiple roles, such as working and looking after

family members at the time of distress and disease conditions. They have a strong emotional

connection and bonding in the family. Current findings were supported by a similar study

conducted among primary caregivers of schizophrenia patients in Spain ( Grandon, Jenaro and

Lemos, 2008 & National Alliance for Caregiving and AARP 2004). While looking into the

marital status and educational qualification of the caregiver, 80% of subjects were married and

28.3% were illiterate. Current study findings suggest that most of the family caregivers

shouldering responsibilities of caregiving tasks, married, illiterate or less educated and cared for

patients as they may not have greater opportunity, and preference of choice doing the job

outside, hence they have been engaged in patients care and household chores. (Sanchez-

Ayendez,1998 )

Most of the subjects in the present study's annual income of ≤ Rs 25,000 (40 %), which indicates

that they belong to the below poverty line (BPL). As per the planning commission of India report

(2014), nearly 363 million people living in India under below poverty line. In terms of family

48
type, the majority of 63% belongs to the Nuclear family. It may be because, there is a huge

demographic shift in Indian traditional joint family, which has broken into a nuclear family,

typically defined as a household with a single married couple, living alone or with their upspring,

such family can be noticed both in rural and urban segment. For the last two decades, it has been

observed that there is a tendency of families to stay separate, need personal space, freedom, and

liberty in decision making. Hence, they prefer to stay separate from the joint family. The

contemporary finding was supported by a study conducted by Allendorf (2013).

5.2 Patients:

Most of the patients belong to the age group of 21-30 years( 40%) and the majority of the

subjects’ educational status is a high school (46%) in the present study. It was observed in

various other studies that the onset of severe mental illness most commonly occurs at the

transition of adolescence and adulthood.The present finding was supported by the National

mental health survey report (2015-16).

5.3 Clinical variables:

In the view of diagnosis of the patients and number of IP admissions ,0-2 times in-patient

admissions is present in schizophrenia patients which is 68%, which clearly indicates non-

adherence to treatment is major challenge in severe mental illness. There is a high chance of

discontinuity of treatment that is associated with psychotic patients. Hence, caregivers have

greater faith in hospitalization and to reduce the treatment cost and avoid the expensive episodic

treatment. The present finding was supported by Van & Kapur (2008).In our study, 61.7% of the

patient’s illness duration is between 1-10 years, and 78% of them haven’t adhered to the

49
psychiatric treatment. The Clinical Global Impression score (1976) showed that 41.7 % of the

patients had moderate improvement in terms of symptoms and functionality.

5.4 Barriers to access treatment:

In terms of barriers to accessing psychiatric treatment, the majority of the caregivers have been

facing difficulty in traveling from their locality to render the hospital services in tertiary

psychiatric settings. The present model of mental health delivery is limited in rural areas and it is

centralized in a few metropolitan cities. It is not easily accessible by people in rural places as

psychiatric facilities are still not collaborated with the primary health care systems (Chavan &

Das,2015). In our findings, more than half (65% ) of the caregivers have encountered barriers in

accessing the hospital services. As they informed, their health condition also deteriorating while

accompanying and traveling repeatedly to the psychiatric hospital. Dissatisfied with the waiting

period to take psychiatric consultation especially in the tertiary psychiatric hospitals where

trained mental health professionals are less. Most of the caregivers (90%) had gone through

challenges in bringing the persons affected by psychiatric disorders during the patient’s

symptomatic phase. Similar results have been found in a study done by Sulaberidze, et al.

(2018).

5.5Availability of social support:

Concerning the social support in the current study, family members were supportive in accessing

the psychiatric treatment for the affected person in their family as stated by the majority of the

caregivers and more than half of them used to get their family members to support to bring the

affected persons for hospital-based psychiatric treatment. Similarly, 63.3% of the caregivers tend

50
to get support from other family members to take care of their affected family member during

their unavailability to provide care for persons with severe mental illness. As per the results,

caregivers get support majorly from the primary level which is their family member (70%) and

minimally ( 23.3%) from the secondary level such as friends and neighbors.

5.6 Emotional support:

While focusing on the emotional support or instrumental support provided to the caregivers, the

majority of them is having someone in their family (58.3%) and friend circle (28.3) whom they

can trust, talk too frankly and share their feelings. The present finding is supported by (Nishio,

et al. 2017)

5.7 Financial support and difficulties:

The majority of the caregivers in this study have felt that they are spending more money to seek

psychiatric hospital treatment for their affected family members on a regular and long term basis.

This includes both direct and indirect costs for the treatment such as medications along with the

traveling charges, food and accommodation to avail the hospital treatment far from their locality.

According to the economic burden of non-communicable disease in India (2012-2023), mental

health costs rank highest in the economic output lost in the overall disease domain next to

cardiovascular disease (Bloom, et al, 2014). Another matching report of the National mental

health survey ( 2015-16) mentioned a larger economic cost burden in providing care for persons

with mental illness mostly spending on out of pocket ( Gururaj, et al, 2016). In the present study,

61.7% of the caregivers got financial support from the other family members to handle the

treatment expenses. However, more than half of the caregivers had taken loans or debt to manage

51
the expenditures for psychiatric treatment. The contemporary finding was supported by a

previous study done by Walke, Chandrasekaran & Mayya (2018).

5.8 Caregiver’s Knowledge about the patient’s illness and psychiatric services:

Regarding the caregiver’s knowledge on patient illness and psychiatric services, 68.3% and

60% of them are aware that their family member is affected by the chronic psychiatric illness

which is a long term one and they need medication for a little longer period to achieve the

asymptomatic period respectively. However, more than half of them felt that their family

member’s psychiatric illness can be cured with the medication or appropriate treatment.

Furthermore, 68.3% of the caregivers weren’t aware of the District mental health program, most

of them didn’t aware of the government welfare benefits provided for persons with mental illness

who has benchmark disability and most of them hadn’t aware of the home-based management

strategies to manage their mentally ill family member at their home.

5.9 Caregiver’s difficulties and their need for home treatment:

Most of the caregivers found difficult to manage their affected family member during the

symptomatic period and all the caregivers felt satisfied with the treatment which was provided at

NIMHANS. Around all caregivers didn’t get any form of training to manage their affected

family members during the symptomatic phase at their home and the majority of them require

home training to deal with the patient. While considering the caregiver's need for home

treatment, most of the caregivers felt the patient need pharmacotherapy at home. As well as

63.3% and 56.7% of the caregivers expressed that their mentally ill family members need the

training to manage themselves on their own and job respectively (Phillips, Zhang, Shi, et al

52
2001).. This clearly shows that many of the caregivers felt the need for home-based treatment

which is because of the difficulties in accessing the treatment, financial constraints, inadequate

knowledge about the illness and burden. Schizophrenia and BPAD patient’s burden among

caregivers have been compared it suggests that caregivers of persons with schizophrenia have a

higher burden than BPAD (Vasudeva, Sekar and Rao, 2013). Both subjective and objective

burden is high in caregivers of schizophrenia in comparison with the caregivers of BPAD

patients (Chakrabarti, et al, 1995). Nevertheless, 60 % of them stated that their mentally ill

family member doesn’t require training to improve attention, problem-solving and decision

making. It may be noted that pharmacological treatment would have responded well to contain

the symptoms (McEvoy, et al, 2006). Hence, they don’t require further intervention.

5.10 Association between the socio-demographic and clinical profile and felt need home-

based care:

Some of the dimensions show statistically significant associations between the studied subjects.

Those dimensions which were computed are the socio-demographic and clinical profile of the

respondents and felt need home-based care. As per the objective of the study, the chi-square test

was done to elicit the relationship between the variables to find out the factors which stresses

home-based care for persons with severe mental illness. First, the association was tested

between the clinical variables and the caregiver's need for home-based care. The number of IP

admissions and caregiver’s need for home training to handle the patient at home were tested, the

result indicate that there is a significant relationship between these variables (P-value is

0.03<0.05). In consonance with present findings, many research findings suggest that caregivers

have a greater degree of stress and anxiety (Dalui, et al, 2014).

53
About the association between the number of admissions and the worsening of the caregiver’s

health condition, it shows there is no significant relationship between two variables ( p-value is

0.13> 0.05). which is contrasting many of the previous findings. in previous findings, a

caregiver’s life affects every dimension of quality of life. there is a significant association

between the diagnosis of the patient and the home training for the patient to improve the

attention, problem-solving and decision-making skills (P-value is 0.04<0.05). family caregivers

with severe mental illness experience moderate to high levels of burden (e.g. Caqueo-Urízar, et

al, 2014; Awad & Voruganti, 2013; Gutierrez-Maldonado, et al., 2005; Magliano, et al., 1998;

Wade & De Jong., 2000, the World Federation of Mental Health, 2010). Therefore, they require

practical support to be dealt with emotional imbalance.

Second, the relationship between socio-demographic profile, sex and caregiver’s need for

home-based treatment was tested. it was significantly associated with their need for home

training to manage the patient’s illness (P-value is 0.02<0.05). As caregivers caring for persons

with severe mental illness to deal with stressful life events, daily hassles, and negative

symptoms, they may have finding difficulties to deal with the behavior that is posed by mentally

ill persons. Therefore, they require professional home-based training where individuals with

severe mental illness can learn, perform, or practicing the skills in relevant situations. Finding is

supported by previous study by Maldonado & Urizar 2007, Duman & Bademli, 2013 &

Hallberg, et al ,2014. Significant association between the annual family income and the loan

taken by the caregivers to manage the treatment expenditure (P-value is 0.00<0.05). Caregivers

have a significant role in caring for and managing persons with mental illness. They have to

provide financial support and incurred the burden of economic difficulties which is consistent

with the previous report of Schizophrenia Bulletin 2008, Marcus & Olfson, 2008)
54
 The annual income of the family is found to be significantly associated with the

caregiver’s need for pharmacotherapy for the patient at home (p-value is 0.02< 0.05). However,

annual family income and caregiver’s need for job training for the patient at home didn’t show

significant association while compared as the P-value is 0.06> 0.05.

There is a significant association between the age of the caregiver versus caregiver’s

health affected due to caregiving and their worsening of health while accompanying their

affected family member for the hospital treatment. family caregivers with severe mental illness

experience moderate to high levels of burden (e.g. Caqueo-Urízar et al., 2014; Awad &

Voruganti, 2013; Maldonado et al., 2005; Magliano et al., 1998; De Rick et al., 2000; the World

Federation of Mental Health, 2010). Therefore, it requires practical support to be dealt with the

emotional imbalance experienced by patients. It was found that there is a significant association

between caregiver’s age and they felt lonely and isolated due to the patient’s illness (P-value is

0.01< 0.05). The age of the caregiver and spending more money to avail the hospital-based

treatment is (0.00< 0.05 ) which indicates the significant association between these two

variables. Moreover, the magnitude of burden among caregivers depends on several factors,

including the age and sex of the caregivers and cultural and ethnic variables (Sartorius, et al,

2005)

5.11 Difference between the two variables:

Lastly, the Mann Whitney U test was performed to identify the differences among the

variables. It shows the significant difference between accessing treatment and type of the family

55
(the P-Value is 0.01), When the duration of illness is compared with the need for the home

treatment domain, the result shows no significant difference (P-value is 0.79 > 0.05). Our

findings with family type and accessing treatment are encouraging the patient and caregivers to

avail of psychiatric treatment.

56
 CHAPTER VI

SUMMARY AND CONCLUSION

57
 Chapter- VI

6. Summary and conclusions:

Objectives of this study were:

 To study the factors which demand home-based care for persons with severe mental

illness.

 To examine the barriers faced by the caregivers to seek psychiatric-hospital based

treatment.

 To assess and compare the felt need services among the study population.

6.1 Methodology

The caregivers of 66 patients were selected through the purposive sampling method from the

out-patient and in-patient psychiatric services at NIMHANS. In that, 60 caregivers had given

consent to participate in the study after explaining the study purpose. This study has adopted a

cross-sectional descriptive design. A semi-structured interview schedule was prepared and was

validated by four experts from various departments who are working in the mental health field.

The socio-demographic sheet of caregivers and patients were used to collect their socio-

demographic profile, to assess the patient’s illness condition, clinical global impression scale was

administered and semi-structured interview schedule was used to assess the domains of barriers

to access treatment, availability of support system, caregiver’s knowledge about illness and

services and also their need for home care services. The researcher has spent around 20-30

minutes to interview each caregiver and proper referral when found to be essential.
58
6.2 Analysis:

The data collected using the socio-demographic data sheet, clinical global impression scale and

semi-structured interview schedule was analyzed using the Statistical Package for Social

sciences 21. Descriptive statistics such as frequency distribution and percentages were applied to

analyze the collected socio-demographic details, clinical global impression and caregiver’s

responses. Chi-square test (χ2) was used to assess the relationship of socio-demographic and

clinical variables versus barriers to access treatment, the need for home-based treatment,

financial challenges. Mann Whitney (U) test was computed to detect the difference between

barriers in accessing treatment across two family groups as well as to examine the difference

between the need for home-based care across the duration of illness category.

6.3 Results:

The acquired results are categorized and represented in the following sections:

6.3.1 Socio-demographic profile and clinical information:

 43.3% of the caregivers belong the middle age group, 58.3% of the caregivers were

female under which 31.7% of them were mothers, the majority( 80%) of the caregivers

got married and 28.3% of them were illiterate, 40% of their annual family income is up to

25,000 and 63% of them belongs to the nuclear family.

 40% of the patients were in the age group of 21-30 years and 46% of them were educated

up to high school.

59
  Schizophrenic conditions were diagnosed in 68% of the patients and 75% of them were

admitted 0-2 times.

 The duration of illness was between 1-10 years in 61.7% of the patients.

 78% of the patients haven’t complaint with the medication and in terms of the clinical

global impression scale, 41.7% of the patients have attained moderate improvement.

6.3.2 Caregiver’s response:

 76.7% of the caregivers had encountered traveling difficulty to seek the psychiatric

hospital treatment and 65% of them had faced barriers while accessing the hospital-based

treatment.

 90% of the caregivers felt difficulty to bring the patient for hospital treatment during the

symptomatic time.

 While accompanying patients for psychiatric treatment 56.7% of the caregiver’s health

condition got worsened.

 81.3% of the caregivers have got support from family members to access the treatment

and 63.3% of their family members were available to take care of the patient during their

absence.

 In terms of social support, 70% of their family members were supporting adequately.

 76.7% of the caregivers have someone to trust, talk too frankly and share feelings with

and 58.3% of their family members were providing adequate emotional support.

60
  With respect to financial constraints, 76.7% of the caregivers felt they were spending

more money to avail of the hospital treatment which includes food, accommodation,

travel and medication.

 61.7% of the caregivers were getting financial support from their family members and

51.7% of them had taken a loan to handle the patient’s treatment cost.

 68.3% of the caregivers are aware that the patient got affected by chronic mental illness

but they are not aware of district mental health services and 91.7% of the respondents

weren’t aware of any mental health services.

 In terms of the need for home-based care, 83.3% of the caregivers felt the need for

pharmacotherapy at home, 63.3% of the caregivers expect home training for the patient to

manage herself/himself and 56.7% of them felt the need for home-based job training for

the patient.

6.3.3 Association and differences across the variables:

 Association between the number of admissions and caregiver’s need for home training to

manage the patient is significant. There is a significant association between diagnosis of

patient and need for home training to improve attention, problem-solving and decision

making.

 There is a significant association between annual family income versus loan taken by the

caregiver to handle the treatment expenditure and need for pharmacotherapy to the

patient at home.

61
  Association between the age of the caregiver and their health due to caregiving is

significant. There is a significant association between the age of the caregiver and their

feeling of spending more money to seek hospital treatment.

 Concerning the differences between the variables, barriers in accessing treatment are

significantly different across types of family groups.

6.4 Implications of social work

The social work profession believes in holistic approach, it promotes social change, providing

therapy, coordinating the care of the people who are mentally ill, enable and empower the people

and enhance well-being.

As we know severe mental illness is a debilitating and chronic in nature which requires prolong

treatment. Therefore, family has to incurred huge financial cost involved in treatment. In such a

situation Social worker should play a catalyst role such as coordinate, integrate and transform

services in order to reduce the cost and ensure quality care and make it consumer friendly

services so that all sections of society regardless of caste, creed, religion, geographical location

people could use without obstacles. Home-based care model is an innovative idea and new

approach specially in India. Enforcing such model would create a role confusion among the

social workers. However, social worker always ready to face the challenges as situation demand

and alter themselves by taking it as new opportunities. Each part of the home-based care would

offer new opportunities for social worker but demand reform in service delivery. Increase in

home-based care services would require increase number of professionals particularly social

worker. If home-based care services are acceptable to all then it will become an essential service

62
where social worker will play a significant role. However, he/she will be working under the

ambit of home-based care model and provide coordinated care in interprofessional teams. But

care integration will make shift from conventional hospital based behavioral health services to

primary care community settings. Social worker can expand their role with coordinating care

services in another level of care at home.

In such a juncture, social worker can apply their valuable skills and knowledge in service user

engagement and activation. Social work profession believes in democratic and participatory

decision making hence they can consider share decision and case management in new spheres of

practices. However, they also need to acquire new skills in dealing family and community

system at grass root level. The focus should be directed towards community linkages which is

an innovative new model that will offer social worker great opportunities to apply Persons in

Environment (PIE) perspective. Home-based care for persons with severe mental illness as an

alternative care model where all team members would redefine their role and responsibilities that

has to be performed as a new practice model. There should be job description and accountability

fixed for the larger interest of professionals, patients, caregivers and general public.

6.5 Conclusion:

Home-based services by the trained mental health professions promote the early

diagnosis, faster improvement and recovery, functionality of the affected individuals

and also it saves immediate family members from encountering additional challenges

secondary to the illness. However, there is a dearth of studies available in India

particularly on why the caregivers of mental illness require home-based care for their

mentally ill family members and what are the potential benefits and drawbacks of such
63
kind of services. This will lead to future directions such as analysis, implementation

and evaluation of this kind of user-friendly service. Moreover, home-based services

would benefit every individual affected by mental illness and their immediate family

members in numerous ways. Last but not the least, it improves the countries' global

health index, per capita income also the growth and development of our nation in

multilevel can’t be achieved without the advancement in the mental health sector.

64
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73
APPENDICES

i
ii
iii
iv
v
 SOCIO-DEMOGRAPHIC DETAILS (CAREGIVER)

1. Name :

2. Age :

3. Sex : Male Female

4. Marital status : Married Unmarried widowed

Seperated

5. Educational status :

6. Occupation :

7. Languages known : Kannada English

8. Relationship with patient :

9. Annual Family income :

10. Type of family : Joint Family Nuclear family Extended

family

(PATIENT)

1. Patient. No: 2. Age:

3. Education in years:

4. Diagnosis:

5. Number of previous hospital admissions:

6. Duration of illness of patient:

7. Treatment Compliance : Yes/No

8. Available welfare benefits?

vi
 Semi-Structured Interview schedule on barriers to access treatment, caregiver’s

Knowledge and their needs for home-based care

Caregiver’s perspective

Barriers to access treatment

1. Have you ever faced difficulties when have you been traveling to reach the hospital for
psychiatric treatment? Yes/No
2. Have you encountered any barriers or difficulty to access the psychiatric treatment?
Yes/No
3. Do you have bus pass/ travel concession which covers travel charges to seek treatment?
Yes/No
4. If you are the earning member, would you take frequent leaves from your work in order
to bring patient for follow up? Yes/No
5. Have you met with any barrier during the psychiatric IP treatment? Yes/No If
yes,Explain_______
6. Have you felt difficulty to bring your family member for hospital treatment on
symptomatic period? Yes/No
7. Do you think that your health condition worsen to accompany him/her for the treatment?
Yes/No

Other remarks
___________________________________________________________________________
___________________________________________________________________________
______

Social Support
8. Is your family members supportive to access treatment? Yes/No
9. Do you usually get support from family members to bring the patient for the hospital treatment?
Yes/No
10. Do you usually get support from relatives to bring the patient your ill family member for the
hospital treatment? Yes/No
11. Does your family member have stopped taking medicine at any point of time? Yes/No
12. Apart from you is there any other family member help you taking care of your family member in
your absence ?Yes/No
13. Do you feel that you are provided with adequate social support by your family
member?/friend Yes/No

vii
14. Do you feel that you are provided with adequate social support by your friend?Yes/No
15. Have you felt that you got adequate social support during the IP treatrment? Yes/No if yes,by
whom ______________

Emotional Support
16. Do you think that your health has been affected because of your caregiving? Yes/No
17. Have you started to feel lonely and isolated due to your family members illness? Yes/No
18. Have you ever felt hopeless /anxious about the future of your family member due to his
condition? Yes/No
19. Do you have someone whom you can trust, talk too frankly and share feelings with?
Yes/No
20. Do you feel that you are provided with adequate emotional support by your family
member /friend ? Yes/No
21. Do you feel that you are provided with adequate emotional support friend?Yes/No
22. Have you felt that you got adequate emotional support during the IP treatrment? Yes/No if
yes,by whom ______________

Any remarks
___________________________________________________________________________
___________________________________________________________________________
________________

Financial support

23. Have you ever felt that you are spending more money to avail the hospital treatment for
your family member (including food, travel and accommodation)? Yes/No
24. Do you feel that you are provided with adequate financial support by your family member to meet
his/her treatment expenses? Yes/No

25. Do you feel that you are provided with adequate financial support by your friend to meet
his/her treatment expenses? Yes/No
26. Do you get any welfare benefits (old age pension, Ayushman bharat etc.,.) which helps
you to bare the treatment expense of your family member? Yes/No
27. Have you taken any loan to manage his/her hospital expenses? Yes/No
28. Are you the earning member in the family? Yes/No
29. Does the efficacy of your work get affected due to the above reasons? Yes/No
Any remarks?

viii
 ________________________________________________________________________
________________________________________________________________________
____________

Knowledge and perceived needs:

30. Do you think that your family member is affected by chronic psychiatric illness? Yes/No
31. Have you thought that your family member’s illness could be cured with medication or
any other treatment modalities? Yes/No
32. Do you feel satisfied with the hospital treatment which you are availing now (medication
and therapies)? Yes/No
33. Have you found difficult to manage your family member during the symptomatic period
of illness? Yes/No
34. Is your family member deny taking medication during the symptomatic period? Yes/No
35. Have you ever felt that you need home training to manage the illness of your family
member? Yes/No
36. Are you aware about district mental health programme? Yes/No
37. Have you accessed any district mental health care services ? Yes/No if yes,
ellobrate_________
38. Have you got any training in managing the various issues of your family illness from
your treating team/community nurses or ASHA workers? Yes/No
39. Have you got training at anytime in managing the various issues of your family illness?
Yes/No If yes, from whom
a.Psychiatric Nurses b.Psychiatric Social Woker c. ASHA Workers d.Others
40. Are you aware about any home based management strategies? Yes/No
41. Do you expect pharmacotherapy in home setting for the symptom reduction? Yes/No
42. Do you think you family member need home training for managing oneself? Yes/No
43. Do you think your family member need training to improve attention, problem solving and
decision making? Yes/No
44. Do you feel that your family member would benefit from training in job perspective at
your place? Yes/No
45. Are you aware of any legal aid support nearby your place? Yes/No
46. Have you seeked any legal aid support at any point of time? Yes/No
47. Do you Know about any government welfare benefits provided for psychiatric illness?
Yes/No If yes, specify________________

Other remarks
________________________________________________________________________
________________________________________________________________________
____________________

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x
 Informed Consent Form for Participants
Title: “Felt Need for Home Setting Care among Care-givers of Persons with Severe
Mental Illness"

I, Ms .K. DEEPIKA, M. Phil scholar at Department of Psychiatric Social Work working on a

research study titled “Felt Need for Home Setting Care among Care-givers of Persons with
Severe Mental Illness" as a part of my M. Phil course under the guidance of Dr. GOBINDA
MAJHI, Associate Professor, Department of Psychiatric Social Work, NIMHANs and joint
guidance of Dr. VIJAYA KUMAR. K.G,Assistant Professor, Department of Psychiatry,
NIMHANS.
Information to Participants: The aim is to study the felt need for Home-setting care among
caregivers of persons with severe mental illness. The study will assess and explore the felt needs
of caregivers of persons with severe mental illness for home setting care. The researcher will use
the structured interview schedules which will assess the selected variables.There are no risks
involved for the participants who are participating in the study. Taking part in this study is
entirely voluntary and the participants may withdraw from the study at any time without giving
any reason for the same.
Undertaking by the Investigator: Your consent to participate in the above study is sought. You
have the right to refuse consent or withdraw the same during any part of the study without giving
any reason. If you have any doubts about the study, please feel free to clarify the same. Even
during the study, you are free to contact the investigator for clarification if you so desire. The
details are provided below,

Investigator Ms .K. DEEPIKA 9500709237

Guide Dr. GOBINDA MAJHI
Co Guide Dr. VIJAYA KUMAR.
K.G
All the information/data collected from you will be kept in strict confidence.

Consent: I have been informed about the procedure of the study. I have also been informed that
there are no risks involved in participating in the study. I have understood that I have the right to
refuse my consent or withdraw it any time during the study without giving any reason. I am
aware that by subjecting to this investigation, I will have to give time for assessments conducted
by the investigator. I ………………………………………, the undersigned, give my consent to
be a participant of this study.

Signature of the Participant Signature of the Investigator

(Name and address) K. Deepika

nd
Date: 2 M.Phil. PSW student

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 NATIONAL INSTITUTE OF MENTAL HEALTH & NEURO SCIENCES
(Institute of National Importance)
Bengaluru

LIBRARY AND INFORMATION CENTRE

No. NIMH/LIB/Thesis./2019-20 Date: 30/05/2020

Name : Ms. K. Deepika

Course : M. Phil

Guide : Dr. Gobinda Majhi

Department : Psychiatric Social Work

Title of the Thesis/ Dissertation: FELT NEED FOR HOME BASED CARE FOR PERSONS
WITH SEVERE MENTAL ILLNESS.

Checked by: Dr. Sachin Y.

This is to certify that the soft copy of thesis sent by Ms. K. Deepika is checked for plagiarism
with Turnitin online software and found 14% similarity. Report is attached for perusal.

Dr. Mathew Varghese

Professor & Officer-in-Charge

Principal Library & Information Officer

xii