|Year : 2021 | Volume
| Issue : 4 | Page : 446-451
Psychosocial rehabilitation, disability, and quality of life in patients with schizophrenia residing in long-stay homes
Rajith K Ravindren1, Kurian Jose2
1 Department of Psychiatry, Institute of Mental Health and Neuro Sciences, Kozhikode, Kerala, India
2 Department of Psychiatric Social Work, Institute of Mental Health and Neuro Sciences, Kozhikode, Kerala, India
|Date of Submission||14-Mar-2020|
|Date of Decision||14-May-2020|
|Date of Acceptance||27-Jul-2020|
|Date of Web Publication||20-Jul-2021|
Dr. Rajith K Ravindren
Department of Psychiatry, Institute of Mental Health and Neuro Sciences, Kozhikode - 673 008, Kerala
Source of Support: None, Conflict of Interest: None
Background: Schizophrenia is a chronic mental illness that results in significant disability. Many patients have difficulties in self-care, communication, and employment. The study assessed the effectiveness of a psychiatric rehabilitation program in reducing disability and improving quality of life (QOL) in patients with schizophrenia residing in long-stay homes. Methods: Forty-two patients with schizophrenia who were inmates of two long-stay homes were the subjects. A rehabilitation program consisting of training in activities of daily living, social skills, medication self-adherence, cognitive training, and psychoeducation was imparted for 6 months. Pre- and post-intervention evaluations were done using IDEAS and WHOQOL-BREF. Wilcoxon signed-rank test was used to assess the significance of the change in outcomes. Results: Scores in self-care, interpersonal activities, communication, and work domain of IDEAS showed a significant reduction with large effect sizes. Domains one, two, and four of WHOQOL-BREF also showed significant improvements with medium to large effect sizes. Conclusion: The rehabilitation program reduces disability and improves the QOL in patients with chronic schizophrenia. Our model of rehabilitation is inexpensive and can be delivered by lay health workers under supervision.
Keywords: Disability, long-stay homes, psychiatric rehabilitation, quality of life, schizophrenia
|How to cite this article:|
Ravindren RK, Jose K. Psychosocial rehabilitation, disability, and quality of life in patients with schizophrenia residing in long-stay homes. Indian J Soc Psychiatry 2021;37:446-51
|How to cite this URL:|
Ravindren RK, Jose K. Psychosocial rehabilitation, disability, and quality of life in patients with schizophrenia residing in long-stay homes. Indian J Soc Psychiatry [serial online] 2021 [cited 2021 Dec 8];37:446-51. Available from: https://www.indjsp.org/text.asp?2021/37/4/446/321882
| Introduction|| |
Schizophrenia is a chronic mental illness characterized by delusion, hallucination, cognitive deficits, and poor functioning. According to the National Mental Health Survey 2016, a lifetime prevalence of 1.4% was observed for schizophrenia and psychotic disorders. The survey also measured disability in work life, social, and family life and found that extreme disability was the highest among persons with schizophrenia and other psychotic disorders. About 80% of patients remain unemployed., Several studies have shown that the quality of life (QOL) in patients with schizophrenia is less than that of the general population and those with physical illness.
Disability in schizophrenia results in poor self-care, communication skills, interpersonal relations, and poor vocational performance. The main reasons for disability in schizophrenia are cognitive deficits, poor social cognition, and social skills. Cognitive deficits occur in the domains of attention, memory, speed of processing, and executive functions. Several methods have been developed to improve cognitive functioning through the stimulation of impaired areas of cognition. This approach is based on the neuroplasticity of the brain. It has been demonstrated that cognitive functions and neuronal connections show improvement when the brain is stimulated in a particular manner. In cognitive rehabilitation, particular neural processes and cognitive functions are stimulated by engaging in specific exercises. Although studies have found that cognitive remediation programs result in improved cognition, its effect on disability and QOL is limited.
Disability which is experienced by persons with chronic schizophrenia manifests as problems in daily living, communication, work, relationship, money management, and medication adherence. Psychiatric rehabilitation interventions help the patients relearn the skills that would enable them to reintegrate into society. The skills training in psychiatric rehabilitation is based on primary and secondary reinforcement, modeling, and social learning. These are done both in an individual setting and in groups.
Most of these studies have been done in resource-rich countries as these rehabilitation programs require the involvement of multiple mental health professionals for a prolonged period. In the present study, we assessed the effectiveness of a psychiatric rehabilitation program in reducing disability and improving QOL in a group of patients with schizophrenia residing in two long-stay homes.
| Methods|| |
The data collection was done as part of the District Psychiatric Rehabilitation Project, an innovative state government-funded project implemented by the Institute of Mental Health and Neurosciences (IMHANS), Kozhikode, with support from the Department of Social Justice, Government of Kerala. The project aimed to provide psychological care and rehabilitation support to the inmates of the government social welfare institutions in Kozhikode district.
The study was conducted in two government long-term residential facilities for males and females located in Kozhikode District, Kerala, India. The homes accommodate persons above 18 years of age who were having mental illness and were abandoned by their families. The homes for male and female patients were located in different locations. The patients undergo initial inpatient psychiatric treatment at the Government Mental Health Centre, Kozhikode. Once their active symptoms subsided, they were transferred to the homes. During the time of the study, the two homes together had 83 inmates looked after by 14 caregivers and 2 staff nurses. Most of the inmates remain in the home lifelong without having any contact with their family. Only a few members of the home were engaged in productive activities such as cleaning and cooking.
The study included inmates who satisfied the diagnostic criteria for schizophrenia as per the Diagnostic and Statistical Manual of Mental Disorders IV-TR and whose duration of illness was more than 5 years. Persons with mental retardation, substance use other than nicotine, traumatic brain injury, and medical diseases that affect brain functioning were excluded. Out of the 83 inmates, 42 (21 males and 21 females) of them who satisfied the inclusion criteria were selected. Disability and QOL were measured before and after the intervention. A baseline assessment of clinical symptoms was done using PANSS. The intervention was delivered by the staff of the homes. A team of mental health professionals trained the staff and monitored the program. The intervention was provided for a period of 6 months. Thereafter, a postintervention assessment was done. There were no dropouts. All the participants continued their antipsychotic medications without any change. The study was approved by the Institutional Ethics Committee of the IMHANS, Kozhikode. Informed oral consent was obtained from all the study participants.
Sociodemographic pro forma
Details such as age, gender, educational status, and clinical details such as duration of illness and insight were documented in the pro forma.
It measures four domains: self-care, interpersonal activities, communication and understanding, and work. It has good concurrent validity with the global assessment of functioning and the Social and Occupational Functioning Scale (SOFS), in patients with schizophrenia. A scale for measuring and quantifying disability in mental disorders which was developed by the Rehabilitation Committee of the Indian Psychiatric Society.
WHOQOL-BREF domain scores have good content validity, internal consistency, and test–retest reliability. It consists of four domains, namely, physical health, psychological health, social relationships, and environment.
The patients were trained by the staff of the homes in the rehabilitation activities. The staff included both permanent and temporary employees. The minimum duration of employment of the staff was 1 year, though some of the permanent staff had more than 5 years of experience in working in homes for patients with chronic mental illness. High school education was the minimum educational qualification of the staff. Most of them had prior experience in community palliative care. They were taught about the basic aspects of mental health and geriatric care when entering the service. A psychiatrist and a psychiatric social worker trained the staff in the rehabilitation activities. The staff was initially trained for a period of 3 days. Thereafter, they received booster training every week. Either of the two mental health professionals used to be present in every session of the rehabilitation program. They monitored and corrected the mistakes of the staff trainers. The program included the following activities [Table 1].
Social skills training
Social skills training is known to improve social competence in patients with schizophrenia. We included activities to improve eye contact, turn-taking, waiting skills, verbalization, and anger management. The activities were based on the module developed by Bellack et al.
Cognitive deficits are a core feature of schizophrenia. We have selected those cognitive domains that were found to be consistently affected in schizophrenia. We included activities to improve verbal learning, attention, working memory, planning, and organization. The activities included memorizing and recital of songs, public speaking, coloring activities, card and board games, rangoli design construction, and mathematical games. A randomized-controlled trial (RCT) by Hegde et al. has shown that home-based cognitive retraining was found to improve neuropsychological functions in patients with schizophrenia.
Training in activities of daily living
Patients with chronic schizophrenia have disabilities in the domain of self-care. We used learning principles, role play, demonstration, and modeling in training skills in activities of daily living.
Training in stress management and medication self-adherence
Conflicts between the staff and the inmates were common in the home. As a result, both the staff and the patients become demotivated and indifferent to the rehabilitation activities. We held group discussions once a week, involving the patients and the staff of the home to iron out the problems and conflicts. Besides, both the staff and the inmates were taught stress management and relaxation techniques.
We also had individual sessions with the patients to understand their needs and problems and to motivate them. Educational programs were held on nutrition and hygiene. We also tried to contact family members of the inmates. We psycho educated those family members whom we could trace. We also ensured that inmates had adequate time for leisure.
The data were analyzed using SPSS for Windows, Version 16.0. Chicago,U.S.A,SPSS Inc. Normality was assessed using the Kolmogorov–Smirnov test. Significance of difference between pre- and post-intervention scores was assessed using the Wilcoxon signed-rank test. P < 0.05 was considered statistically significant. The effect size was calculated using the formula r = Z/n, where Z is the test statistic for Wilcoxon signed-rank and n is the number of observations.,
| Results|| |
The study group consisted of forty-two patients with schizophrenia of 5 years or more duration. The mean age of the patients was 41.9 years. Twenty-one among them were married. Most of them were from a rural background. More than half of them were having poor insight [Table 2]. The mean PANSS score was 52.9. The mean score on the negative scale (18.8) was more than the mean score on the positive scale (9.8).
Changes in disability (IDEAS) postintervention
The score in self-care reduced from a mean score of 1.1 to 0.7 postintervention. This change was significant (P = 0.01), with effect size falling in large range (r = 0.52). The score in interpersonal activities reduced from a mean score of 1.7 to 1.2 postintervention. This change was significant (P = 0.01), with effect size falling in large range (r = 0.67). The score in communication showed an improvement from a mean score of 1.8 to 1.3 postintervention which was significant (P = 0.01), with effect size falling in large range (r = 0.52). The score in the work domain reduced from a mean score of 1.8 to 1.2. This change was significant (P = 0.01), with effect size falling in large range (r = 0.54) [Table 3].
Changes in quality of life (WHOQOL-BREF) postintervention
QOL showed improvement in all scales other than domain three. Domain one checks physical health. Here, the mean score improved from 51.17 to 61.6. The change was significant (P = 0.01) with a large effect size (r = 0.59). Domain two looks into the psychological well-being. Here, the mean score improved from 45.45 to 52.43, which was significant with medium effect size (r = 0.42). Domain four checks the environment such as recreation and security. The mean score rose from 45.62 to 51.9, which was significant (P = 0.04) and a large effect size of r = 0.51. There was no difference between males and females concerning the outcome [Table 4].
| Discussion|| |
Many of the recommended evidence-based practices in psychiatric rehabilitation were developed in Western countries. The Schizophrenia Patient Outcomes Research Team recommends eight psychosocial interventions, as adjuncts to pharmacotherapy: assertive community treatment, supported employment, cognitive behavioral therapy, family-based services, token economy, skills training, and psychosocial interventions for alcohol, substance use disorders, and weight management. Social skills training and family psychoeducation are the evidence-based rehabilitation intervention practiced in India. Koujalgi et al. found that in patients having schizophrenia with predominantly negative symptoms, social skills training improved social functioning. An RCT found that structured family psychoeducation was better than routine care in improving psychopathology, disability, and caretaker satisfaction. The beneficial effect of the family educational program was also reported by Thara et al.
The quality of evidence is generally low for certain evidence-based rehabilitation practices in middle- and low-income countries. The social and cultural acceptance of many of the rehabilitation programs is also open to debate. Assertive training is criticized as coercive and expensive by some of the experts. In India, family plays a major role in reintegrating the patients. This makes programs such as community re-entry module less effective in Indian society. Patient participation in individual placement and support also leaves much to be desired.
The severe shortage of mental health professionals is another reason that hampers rehabilitation activities in India. The mental health gap action program of the WHO has recommended the use of community health workers to provide intervention in areas where health professionals are in short supply. Asher et al. advocate delivery of rehabilitation services by lay health workers, and peer support groups, in low and middle income countries. Further, Community care for People with Schizophrenia in India trial has shown that community-based services to patients with schizophrenia can be provided by community health workers under supervision.
There have been efforts in India to develop rehabilitation modules that suit our social and cultural milieu. Chowdur et al. did a retrospective evaluation of 54 case files at a halfway home. The study showed that rehabilitation work at the home showed improvement in work, money management, communication, and general behavior. Another study from India measured the effectiveness of integrated psychological therapy on social functioning and cognitive functions in schizophrenia. The results of this study showed improvement from baseline to follow-up on intelligence quotient, attention, executive functions, visual and verbal learning, and memory, improvement in sociooccupational and role functioning, and decrease in symptom severity. An activity-based rehabilitation program has shown improvement in negative symptoms in patients with schizophrenia.
Our intervention module was delivered by the staff of the home under expert supervision. Patients showed improvement in self-care, interpersonal activities, communication, and work domains of IDEAS. Sahoo et al. had shown that IDEAS had good concurrent validity with SOFS. This implies that the improvement in disability shown by our patients may result in better sociooccupational functioning.
The patients also experienced an improvement in the QOL measures except for domain three of QOL-BREF. Domain three has questions on personal relationships, social support, and sexual activity. We assume that the lack of avenues for heterosexual sex at home may be the reason for the absence of improvement in this domain. Many authors have expressed doubts as to whether patients with schizophrenia are capable of assessing their QOL because of lack of insight. Browne et al. and Lehman et al. have noted that it is desirable to collect QOL data from these patients., Skantze et al. showed that patients with schizophrenia can report their social deficits, which validated the use of as an outcome measure in schizophrenia.
Our model of rehabilitation is cost-effective, easily scalable, and can be delivered by lay health workers under supervision. The model requires some space for the activities, chairs, board, chalk, paper, pen, balls, etc., One trainer can train up to 10 persons. The cost for the model, thus, includes salary/incentive for the trainers and supervising mental health professionals and the purchase of items for rehabilitation activities. Patients have to come to the center at least three times a week. We suggest that most of the activities have a fun element to avoid monotony. After 6 months, reevaluation can be done. Those patients, whose disability reduces, may be motivated to enter the job market and seek jobs that match their aptitude. Such a model can be used in institutions and community settings.
Our study has certain limitations. We have not checked the changes in psychopathology after the intervention. This would have given a better idea of the impact of the intervention on clinical symptoms. Patients in our study continued their medicines without much change. This failure to control for the effect of medicines is another limitation of the study. Although antipsychotic drugs are relatively inefficient in improving functioning and negative symptoms, further case–control studies and RCTs are desired.
There is a scarcity of data on psychiatric rehabilitation in India. Culturally sensitive rehabilitation programs can go a long way in reducing disability in patients with schizophrenia. The participation of community health workers can ensure the delivery of such programs to the vast number of needy populations.
Financial support and sponsorship
Department of Social Justice, Government of Kerala.
Conflicts of interest
There are no conflicts of interest.
| References|| |
Gururaj G, Varghese M, Benegal V, Rao GN, Pathak K, Singh LK, et al
. National Mental Health Survey of India, 2015-16: Summary. Bengaluru: National Institute of Mental Health and Neurosciences; 2016.
Kooyman I, Dean K, Harvey S, Walsh E. Outcomes of public concern in schizophrenia. Br J Psychiatry Suppl 2007;50:s29-36.
Marwaha S, Johnson S. Schizophrenia and employment – A review. Soc Psychiatry Psychiatr Epidemiol 2004;39:337-49.
Bobes J, Garcia-Portilla MP, Bascaran MT, Saiz PA, Bousoño M. Quality of life in schizophrenic patients. Dialogues Clin Neurosci 2007;9:215-26.
Green MF, Kern RS, Heaton RK. Longitudinal studies of cognition and functional outcome in schizophrenia: Implications for MATRICS. Schizophr Res 2004;72:41-51.
Nahum M, Lee H, Merzenich MM. Principles of neuroplasticity-based rehabilitation. Prog Brain Res 2013;207:141-71.
McGurk SR, Twamley EW, Sitzer DI, McHugo GJ, Mueser KT. A meta-analysis of cognitive remediation in schizophrenia. Am J Psychiatry 2007;164:1791-802.
Smith TE, Bellack AS, Liberman RP. Social skills training for schizophrenia: Review and future directions. Clin Psychol Rev 1996;16:599-617.
Grover S, Shah R, Kulhara P, Malhotra R. Internal consistency and validity of Indian disability evaluation and assessment scale (IDEAS) in patients with schizophrenia. Indian J Med Res 2014;140:637-43.
] [Full text]
Sahoo S, Grover S, Dua D, Chakrabarti S, Avasthi A. Concurrent validity of Indian disability evaluation and assessment scale with socio occupational functioning scale in patients with schizophrenia. Indian J Psychiatry 2017;59:106.
WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998;28:551-8.
Bellack AS, Mueser KT, Gingerich S, Agresta J. Social Skills Training for Schizophrenia: A Step-By-Step Guide. 2nd
ed.. New York: Guilford Publications; 2013.
Hegde S, Rao SL, Raguram A, Gangadhar BN. Addition of home-based cognitive retraining to treatment as usual in first episode schizophrenia patients: A randomized controlled study. Indian J Psychiatry 2012;54:15-22. [Full text]
Cohen J. Statistical power analysis for the behavioral sciences: Jacob Cohen. J Am Stat Assoc 1988;84:19-74.
Tomczak M, Tomczak EW. The need to report effect size estimates revisited. An overview of some recommended measures of effect size. Trends Sport Sci 2014;21:19-25.
Dixon LB, Dickerson F, Bellack AS, Bennett M, Dickinson D, Goldberg RW, et al
. The 2009 schizophrenia PORT psychosocial treatment recommendations and summary statements. Schizophr Bull 2010;36:48-70.
Pathak A, Chaturvedi SK. A systematic review of interventions in psychiatric rehabilitation. Int J Med Invest 2015;4:272-81.
Koujalgi SR, Patil SR, Nayak RB, Chate SS, Patil NM. Efficacy of social skill training in patient with chronic schizophrenia: An interventional study. J Sci Soc 2014;41:156. [Full text]
Kulhara P, Chakrabarti S, Avasthi A, Sharma A, Sharma S. Psychoeducational intervention for caregivers of Indian patients with schizophrenia: A randomised-controlled trial. Acta Psychiatr Scand 2009;119:472-83.
Thara R, Padmavati R, Lakshmi A, Karpagavalli P. Family education in schizophrenia: A comparison of two approaches. Indian J Psychiatry 2005;47:218-21.
] [Full text]
Asher L, Patel V, De Silva MJ. Community-based psychosocial interventions for people with schizophrenia in low and middle-income countries: Systematic review and meta-analysis. BMC Psychiatry 2017;17:355.
Drake RE, Deegan PE. Are assertive community treatment and recovery compatible? Commentary on “ACT and recovery: Integrating evidence-based practice and recovery orientation on assertive community treatment teams“. Community Ment Health J 2008;44:75-7.
Sivakumar T, Radhakrishnan G. Caveats in psychiatric rehabilitation. Indian J Psychiatr Nurs 2016;11:49.
World Health Organisation. mhGAP Mental Health Gap Action Programme: Scaling Up Care for Mental, Neurological and Substance Use Disorders. Geneva: World Health Organisation; 2008.
Chatterjee S, Naik S, John S, Dabholkar H, Balaji M, Koschorke M, et al
. Effectiveness of a community-based intervention for people with schizophrenia and their caregivers in India (COPSI): A randomised controlled trial. Lancet 2014;383:1385-94.
Chowdur R, Dharitri R, Kalyanasundaram S, Suryanarayana RN. Efficacy of psychosocial rehabilitation program: The RFS experience. Indian J Psychiatry 2011;53:45-8.
] [Full text]
Taksal A, Sudhir PM, Janakiprasad KK, Viswanath D, Thirthalli J. Feasibility and effectiveness of the Integrated Psychological Therapy (IPT) in patients with schizophrenia: A preliminary investigation from India. Asian J Psychiatr 2015;17:78-84.
Ravindren RK, Shibukumar TM, Lekshmi B, Jose K. Activity based group intervention in improving negative symptoms and functional outcome in patients with chronic schizophrenia in welfare homes. J Psychosoc Rehabil Ment Health 2018;5:119-25.
Browne S, Roe M, Lane A, Gervin M, Morris M, Kinsella A, et al
. Quality of life in schizophrenia: Relationship to sociodemographic factors, symptomatology and tardive dyskinesia. Acta Psychiatr Scand 1996;94:118-24.
Lehman AF, Postrado LT, Rachuba LT. Convergent validation of quality of life assessments for persons with severe mental illnesses. Qual Life Res 1993;2:327-33.
Skantze K, Malm U, Dencker SJ, May PR, Corrigan P. Comparison of quality of life with standard of living in schizophrenic out-patients. Br J Psychiatry 1992;161:797-801.
Swartz MS, Perkins DO, Stroup TS, Davis SM, Capuano G, Rosenheck RA, et al
. Effects of antipsychotic medications on psychosocial functioning in patients with chronic schizophrenia: Findings from the NIMH CATIE study. Am J Psychiatry 2007;164:428-36.
[Table 1], [Table 2], [Table 3], [Table 4]