The socio-demographic parameters, negative symptoms, disruptive symptoms, frequent hospitalisations, medication side effects, long duration of untreated illness with downhill course, short duration of treatment and lack of social support have been recognised as the important factors responsible for disability in schizophrenia.^3,4

Accordingto WHO, a disability is “any restriction or lack (resulting from any impairment) of ability to perform an activity in the manner or within the range considered normal for a human being” (WHO, 1980). The level of disability is more in all chronic mental disorders compared to chronic physical illness (Shiv Goutam- 1985). Disabilities in person with schizophrenia that may result directly are poor self-care, difficulty in daily living skill, social withdrawal, problems in employment and in relationship to their social environment. The range of disability that occur depends upon the interaction of the patient with their social environment.⁵

About one-third of schizophrenic patients tend to become chronic leading to much disability and loss of manpower.⁶ But for most, it is a life long illness. About 25% of diagnosed schizophrenics recover fully, another 50% make a partial recovery and rest 25% of cases require long-term care for their persistent and severe symptoms.^6,7 Persons withpsychiatric disability are usually idle in their homes and may require assistance or prompting even todo activities of daily living. This eventually posesa challenge for the caregivers and burdens themwith additional duties of assisting the un-productive family member after discharge.⁸ This could deteriorate the family functioning and can even develop negative expressed emotions in primary caregivers. It may promote revolving door syndrome and ultimately poor progress in disability. This also affects the mental health system of our country.⁸

Family, theprimary environment, might stimulate thepersons with schizophrenia in reducing theirdisability. Perhaps the family environment could influence either in a positive or negative way basedon the mutual reciprocations. In India familiesrepresent key resource persons in the care of personswith mental disorders.⁹ There are inadequateresource personnel to execute psychosocialinterventions mainly after discharge from hospital, hence keyrelatives are important and can be utilised astreatment collaborators. Healthy family environment with adequate social support would be ideal forpersons with schizophrenia in leading the life withoptimal functioning.¹⁰ Family burden refers to a psychological state that ensues from the combination of physical work and emotional and social pressure involved in caring. According to Platt ‘familyburden’ refers to the presence of problems, difficulties or adverse events which affect the lifeof the person with mental disorders and patients’ significant others.¹¹ Although, the entire family experiences the burdenof illness, a major part of the responsibility is oftenshouldered by one “primary caregiver” whoexperiences physical and emotional burden.

It has been documented that up to 83 percent of the friends and family members of person with schizophrenia experience considerable financial, emotional and practical burdens. They report time lost from work, unreimbursed medical and other patient-related expenses, limited time for leisure and socialising, elevated symptoms of psychological distress and feelings of stigmatisation. In addition to its impact on caregiver quality of life, care-giving strain has been associated with other adverse effects including poorer self-rated health, chronic medical conditions or both; increased visits to a primary care physician; greater use of psychotropic drugs such as tranquilizers and antidepressants; and increased risk of medical hospitalisation.^12-14

Review of literature in Indian^12,13 and in International scenario¹⁴ highlights the family burden in schizophrenia as a major issue compared to other mental illness. The evidence based data arouses major concern as disability in persons with schizophrenia and caregivers coping skills required to be enhanced for better care giving process. A recent study showed deficit in the areas of social functioning have a significant negative correlation with social support system.¹⁵ Baker et al (1992) have shown that psychiatric patients with high and sustained social support have higher life satisfaction over time.¹⁶ Healthy family environment with maintained high level of social support would be ideal forpersons with schizophrenia for better community living withadequate functioning. The recent studies suggest that disability in persons with schizophrenia as well as caregivers coping skills can be improved for better care giving and better functioning of the subject.¹⁷ Caregiver’s high active coping skill as well as high social support has been repeatedly linked to low levels of family burden (Magliano, Fadden, Economou et al, 2000; Potasznik and Nelson, 1984; Solomon and Draine, 1995).^18,19

As per our knowledge, there are few studies on disability in schizophrenia and its correlation with family burden and perceived social support. Assessment of disability and its correlation with perceived social support and family burden can help us to develop measures for lessening family burden, improving social support for the better living of the subjects.

MATERIALS AND METHODS

Study Design and Settings

This cross-sectional, hospital-based study was conducted over a period of one year in the Institute of Postgraduate Medical Education and Research (IPGMER), Kolkata, India. IPGMER is a multispeciality teaching cum tertiary care hospital providing services to a major area of eastern part of India.

Aim

Aim of the study was to assess the nature and severity of disability in persons with schizophrenia, perceived social support as well as burdens among caregivers of patients.

Sample Size and Sampling

All consecutive subjects aged between 18 and 59 years, of either genders attending the outpatient department of psychiatry of the institute, fulfilling the criteria of schizophrenia as per the International Classification of Diseases, 10^th version, Classification of Mental and Behavioural Disorders²⁰ were taken up for the study with their consent. Purposive sampling method was used in this study. Total one hundred subjects and their caregivers were enrolled within one-year convenient study period. The primary caregivers were interviewed. Patients with diagnoses of schizoaffective disorder, other co-morbid psychiatric disorders, substance use disorders, personality disorders, mental retardation, organic brain syndrome and chronic debilitating physical illnesses were excluded from the index study. Thereafter, all patients were assessed on IDEAS (Indian Disability Evaluation Assessment Scale) for disability, Social Support Questionnaire (SSQ) for perceived social support and Family Burden Interview Schedule- Short Form (FBIS-SF) for family burden.

Research Instruments

Indian Disability Evaluation Assessment Scale (IDEAS)²¹

In 2001, the Rehabilitation Committee of the Indian Psychiatric Society took on the responsibility of developing a task for assessing and qualifying psychiatric disability and this Indian Disability Evaluation and Assessment Scale (IDEAS) was born. It has now been gazetted by the ministry of Human Resources and Empowerment, Government of India as the recommended instrument. IDEAS have four items: self-care, interpersonal activities (social relationships), communication and understanding and work. Each item is scored between 0 and 4, i.e. from no disability to profound disability. The MI 2Y-score for the duration of illness was given as: < 2 years= 1; 2 - 5 years= 2; 6 - 10 years= 3; > 10 years= 4. The global disability= total disability score + MI 2Y score. The percentage of global disability scores as follows: Score 0= no (0%) disability; Score 1 - 7= mild (< 40%) disability; Score 8 - 13= moderate (40 - 70%) disability; score 14 - 19= severe (71-99%) disability; score 20= profound (100%) disability.

Social Support Questionnaire (SSQ)²²

It is an Indian adaptation (Nehra et al, 1998), of the Pollack and Harris Scale (Pollack and Harris, 1993) to measure perceived social support. It has 18 items. A higher score indicates more perceived social support. The items in the scale refer to help, concern, support, reinforcement and criticism that a person gets from one’s family, friends, social acquaintances and working colleagues. It is a dependable instrument in terms of both consistency and stability of scores. It can be used in a variety of situations where the perceived social support is required as an independent, dependent or intervening variable. It has a test-retest reliability of 0.59 and correlation with clinician’s assessment at 0.80 and with items of social support from Family Interaction Pattern Scale (Bhatti et al, 1986) at 0.65.

Family Burden Interview Schedule- Short Form (FBIS-SF)²³

The Family Burden Interview Schedule- Short Form (FBIS/SF) is adapted from the Toolkit for Evaluating Family Experience with Severe Mental Illness by Richard Tessler and Gail Gamache in 1994. The FBIS/SF takes a multi-dimensional approach and distinguishes different aspects of burden from one another. There are 65 items, which include five modules related to the negative aspects of caregiving: (1) Assistance with the activities of daily life; (2) Supervision of bothersome or troublesome behaviours; (3) Impact on daily routines; (4) Financial expenditures and (5) Worry on daily routines.

Statistical Analysis

Descriptive analysis was computed in terms of mean and standard deviation for continuous variables and frequency with percentage for ordinal and nominal variables. Correlation analysis of different level of disability with Family Burden and Perceived Social Support was done using Pearson’s product moment and Spearman’s rank order correlation. Multivariate (linear regression) analysis using the enter method was used to study the effect of Perceived Social Support and Family Burden (independent variables) on global disability. For all statistical analyses, p < 0.05 (2-tailed) was considered to be statistically significant. The statistical package for social sciences (SPSS) version 16.0 was used for the analysis of the data of this study.

RESULTS

The sample consisted of 58 men (58%) and 42 women (42%). The socio-demographic profile revealed that majority (35%) of the subjects in this study fell within the age range of 30 - 39 with the mean age of 32.75 (SD= 9.373). 19% were illiterate and 42% were educated up to primary school. While 44% of the subjects were single (unmarried, widow/widower, divorced or separated), 56% were married. Most of the patients were unemployed (38%). 57% of the subjects belonged to rural domicile and 43% were from urban domicile. Majority (62%) of the subjects had per capita income below Rs. 600.00 with sample’s mean per capita income of Rs. 667.44 per month (SD= 543.80). Majority (51%) of patients had 2 - 5 years of total illness duration, of which majority (27%) had severe level of disability. 71% patients received treatment for 1 - 5 years. Parents were the primary caregivers in most (45%) of the cases.

It was found that majority (57%) of the patients were having severe level of disability in global, interpersonal activity and communication and understanding areas. Only 2% and 6% patients had mild and profound global level of disability respectively. Disability in work and self-care domains were moderately affected in majority of the patients (63% and 55% respectively). Mean perceived social support was 43.02 (SD= 6.173) (Table 1 and 2).

Most of the patients needed assistance (51%) and supervision (90%) in daily living once or twice in a week. Financial burden for maintaining treatment and not doing any work was seen once or twice in a week among 84% caregivers (Table 3).

Strong correlation of global disability and its different domains (self-care, interpersonal activity, communication and understanding, works and MI2Y) with perceived social support and family burden was found. Perceived social support and global disability were negatively correlated. Different domains of disability are also significantly (negatively) correlated with SSQ total score. Positive correlation of family burden with global as well as some domains of disability was also seen (Table 4). No correlation of global and other domains of disability with socio-demographic (viz. age) and clinical profile (viz. total duration of illness) was found.

To study the effect of independent variables on disability, linear regression with enter method was performed. For this, all the variables (viz. SSQ total score and FBIS-SF score) that had shown significant correlation with any of the domains of IDEAS were considered as independent variables and scores on the Global score on IDEAS was considered as dependent variables. The findings were interpreted as the percentage variance accounted for in the dependent variable by the independent variables alone and in combination, and by examining the partial correlations of the residuals [variables removed from analysis as they failed to achieve significant predictive power (e.g. significance level < 0.05)] accounted for in the dependent variable by the independent variables with the dependent variable. The total score of Family Burden (FBIS-SF) and Perceived Social Support (SSQ) total score emerged as the sole significant predictor of Global disability (Table 5).

**Correlation is significant at the 0.01 level (2-tailed), *Correlation is significant at the 0.05 level (2-tailed).