RESEARCH REPORT

 

OPEN ACCESS | Research Report | Published Online: 29^th  June 2025                                                                           

PERCEIVED SOCIAL SUPPORT AMONG PEOPLE WITH LIVED EXPERIENCE OF SERIOUS MENTAL ILLNESS IN REMISSION AND THEIR DISABILITY: A CROSS-SECTIONAL STUDY

                                                                                                                                                                                                                  

Deena Anna Jacob¹, Sheena Varughese^2*, Joice Geo³, Roy Abraham Kallivayalil⁴

1. Postgraduate Resident, 2. Associate Professor, 3. Professor and Head, 4. Professor Emeritus, Department of Psychiatry, Pushpagiri Institute of Medical Sciences and Research Center, Thiruvalla, Kerala.

*Corresponding Author: Associate Professor, Department of Psychiatry, Department of Psychiatry, Pushpagiri Institute of Medical Sciences and Research Center, Thiruvalla, Kerala,

Email: drsrliza@gmail.com   

 

INTRODUCTION

 

 

Serious mental illness (SMI) can be defined as a mental, emotional, or behavioral disorder (excluding developmental and substance use disorders) that results in marked functional impairment and substantially interferes with or limits one or more major life activities.¹ It mainly includes schizophrenia spectrum disorders, depressive disorders, and bipolar and related disorders.² It is a chronic or recurring illness that negatively affects an individual's life, family, and community.

People with lived experience of SMI are those who have personally faced the disabling effects of mental illness. This includes emotional isolation, financial burdens, job denial, marital problems, and poor psychological well-being, apart from social stigma. ³ Disability can be defined as any condition of the body or mind that interferes with the activities of the whole person concerning the immediate environment, resulting in activity limitation and restriction in participation. ⁴ The magnitude of disability caused by SMI is severe and reflected in every sphere of life of PWLE and is equally shared by caregivers, especially in a developing country like India. ⁵ According to a recent study on the Global Burden of Diseases (GBD), psychiatric illness accounts for 32.4% of years lived with disability (YLDs) and 13% of the disability-adjusted life-years (DALYs). The contribution of mental disorders to the total DALYs in India has doubled since 1990 and reached 4.7%. ⁶

Social support is commonly divided into perceived and received support. In perceived support, the individual subjectively believes that their network will provide adequate help when needed, whereas in received support, the individual is actually provided with help when needed. ⁷ Of the two variables, perceived support is most frequently assessed and more consistently reduces stress and improves physical and mental health. ^8,9

Many measures have been taken in the last few decades to improve social support for people with a lived experience of SMI. However, there were only a few studies examining the impact of perceived social support on their disability.¹⁰ Hence, this study aims to find out the association between perceived social support and disability among people with lived experience of serious mental illness

MATERIALS AND METHODS

This is a cross-sectional study conducted among patients diagnosed with schizophrenia spectrum and other psychotic disorders, bipolar and related disorders, and depressive disorders in complete or partial remission according to DSM-5¹¹ criteria by a treating psychiatrist attending psychiatry OPD of a tertiary care center from Kerala.    The study was conducted over a period of 6 months, following clearance from the Institutional Ethics Committee. The sample size required for the study was calculated using GPower version 3.2.9.6, with inputs based on the survey conducted by Prabhakaran et al.¹² The minimum sample size needed for this study was 124. 

After describing the nature of the study, written informed consent was obtained from study participants who were recruited consecutively, and patients without capacity were excluded. Sociodemographic details were also collected using a semi-structured proforma prepared for the study, and available medical records were used to obtain the clinical information of the patients. A semi-structured proforma comprising past medical, psychiatric, and personal history was used to exclude patients with intellectual disability, patients with substance use disorder other than nicotine, chronic medical illness, and other physical illness, such as locomotor, visual, and hearing impairment. Participants from both genders in the age group of 20 to 65 years were included in the study. The principal investigator then administered the following tools depending on the diagnosis.

1. The Hamilton Depression Rating Scale (HAM-D-17) is a clinician-administered scale for depression that is used most frequently. A score of 0-7 is within the normal limit and indicates remission. ¹³
2. The Young Mania Rating Scale (YMRS) is the most widely used clinician-administered scale for assessing symptoms of mania. It has 11 items, and a total score of < 12 out of 60 indicates remission. ¹⁴
3. The Brief Psychiatric Rating Scale (BPRS) is an instrument used for assessing the severity of illness in an individual with psychosis. There are a total of 18 items, and the total score is obtained by adding each item. A score of < 8 indicates remission. ¹⁵
4. Multidimensional Scale of Perceived Social Support (MSPSS) is the self-rated most extensively used scale to assess perceived social support. This is a 12-item scale designed to measure the perception of support from 3 sources: family, friends, and significant others, which includes special partners, service staff, organizations, neighbors, or close relatives such as an uncle or aunt. The total score of 12-48 is taken as poor perceived social support, 49-68 as moderate, and 69-84 as high perceived social support. ¹⁶ The tool was translated into the vernacular language using the translation and back-translation method.
5. World Health Organization Disability Assessment Schedule 2.0. (WHODAS II) – This is a 12-item questionnaire to assess the disability. It captures the level of functioning in six domains of life, namely cognition, mobility, self-care, getting along, life activities, and participation, by asking about difficulties over the past 30 days.¹⁷ It can be administered by a lay interviewer, self, or by a proxy (family member, friend, or carer). Each question was graded as none, mild, moderate, severe, or extreme disability based on the Likert scale. The total score is calculated, and scores more than or equal to 24 are considered to have relevant disability. ¹⁸ 

Categorical variables were recorded as frequencies and percentages, and the continuous variables as mean and standard deviation. To find out the association, Fisher’s exact and Chi-square tests were used. P < 0.05 was considered statistically significant. Statistical analysis was done using Statistical Package for the Social Sciences (SPSS) version 27.

RESULTS

Among 125 participants, 32 (25.6%) had schizophrenia spectrum disorder, 51 (40.8%) had bipolar and related disorder, and 42 (33.6%) had depressive disorder in partial or complete remission. The mean age of the study population was 43.88 years (SD +12.8). The mean age of participants with schizophrenia spectrum disorder was 41.96 (SD + 4.8); depressive disorder was 43.23(SD + 5.6); and bipolar and related disorder was 45.62 years (SD + 6.8). More than half (77) of the participants were female (61.6%); among them, 34 (44.1%) had depressive disorder, 30(38.96%) had bipolar and related disorders, and 13 (16.8%) had schizophrenia spectrum disorder. Depressive disorder is found to be more common in females. Among 125 participants, 70 (56%) belong to the Christian community, which may be due to the specific geographic area. Out of 125 participants, 41 (32.8%) were housewives and 27(21.6%) were unemployed. Only 47(37.6%) were employed, and 10 (8%) were students. Duration of illness was more than twenty years for 34 participants (27.2%), 10 to 20 years for 45 participants (36%), and less than 10 years for 46 participants (36.8%). Seventy-six (60.8%) participants had a family history of psychiatric illness. Fifteen (12%) participants had a self-harm attempt in the past. (Table 1)

Perceived social support was high in 17 (13.6%) participants, moderate in 60 (48%), and low in 48 (38.4%) participants. One hundred thirteen participants (90.4%) did not have any disability that affected their day-to-day activities and could fulfill their responsibilities. (Table 2)

 Table 1. Distribution of Socio-demographic and Clinical Variables

Variables	Total sample 125	Schizophrenia spectrum disorder Total=32	Bipolar and Related Disorder Total =51	Depressive Disorder
Age (Years)
20-35	32(25.6%)	6(18.7%)	12(23.5%)	14(33.3%)
36-50	49(39.2%)	17(53.1%)	20(39.2%)	13(30.9%)
51-65	44(35.5%)	9(28.1%)	19(37.2%)	15(35.7%)
Gender
Male	48(38.4%)	19(59.3%)	21(41.1%)	8(19.04%)
Female	77(61.6%)	13(40.6%)	30(58.8%)	34(80.9%)
Marital Status
Single	37(29.6%)	18(56.2%)	10(19.6%)	9(21.4%)
Married	77(61.6%)	13(40.6%)	35(68.6%)	29(69.04%)
Separated/Divorced	8(6.4%)	1(3.1%)	5(9.8%)	2(4.7%)
Widow	3(2.4%)	0	1(1.9%)	2(4.7%)
Education
Primary	32(25.6%)	6(18.7%)	13(25.4%)	13(30.9%)
Secondary	33(26.4%)	11(34.3%)	16(31.3%)	6(14.2%)
Undergraduate	43(34.4%)	8(25%)	17(33.3%)	18(42.8%)
Postgraduate	17(13.6%)	7(21.8%)	5(9.8%)	5(11.9%)
Residency
Urban	23(18.4%)	7(21.8%)	6(11.7%)	10(23.8%)
Rural	102(81.6%)	25(78.1%)	45(88.2%)	32(76.1%)
Occupation
Farmer/Laborer	6(4.8%)	3(9.3%)	1(1.9%)	2(4.7%)
Student	10(8%)	2(6.2%)	2(3.9%)	6(14.2%)
House wife	41(32.8%)	5(15.6%)	19(37.2%)	17(40.4%)
Unemployed	27(21.6%)	15(46.8%)	8(15.6%)	4(9.5%)
Non-Professional	20(16%)	4(12.5%)	11(21.5%)	5(11.9%)
Professional	14(11.2%)	1(3.1%)	8(15.6%)	5(11.9%)
Retired	7(4%)