|Ahead of print
|Empowering the caregivers of persons with schizophrenia – A psychosocial approach
Kannappa V Shetty1, Navaneetham Janardhana2, Suresh Bada Math3, P Marimuthu4, Ravi Philip Rajkumar5
1 Assistant Professor, Department of Psychiatric Social Work, Dharwad Institute of Mental Health and Neuro Sciences, Dharwad, Karnataka, India
2 Professor, Department of Psychiatric Social Work, NIMHANS, Bengaluru, Karnataka, India
3 Professor, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka, India
4 Professor, Department of Biostatistics, NIMHANS, Bengaluru, Karnataka, India
5 Additional Professor, Department of Psychiatry, Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry, India
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|Date of Submission||16-May-2021|
|Date of Acceptance||09-Sep-2021|
|Date of Web Publication||23-Nov-2021|
Background: Caregivers are generally the main support system for people with schizophrenia in India.
Materials and Methods: The study aimed to evaluate the efficacy of psychosocial intervention (PSI) of knowledge about schizophrenia among the caregivers of persons with schizophrenia (PWS). Eighty caregivers of PWS were categorized into two groups: one group received routine care and the other group received additional PSI. The PSI program consisted of ten sessions with separate methodology and techniques. The Knowledge about Schizophrenia Interview, Mini-International Neuropsychiatric Interview 6.0, and sociodemographic interview schedule were used.
Results: There was a significant change in pre- and postscores of the intervention group (PSI) on caregivers' knowledge (t = ‒16.64; P = 0.000) about schizophrenia.
Conclusion: Study results indicate that caregivers in the experimental group (PSI) were having better knowledge about the illness than those in the control group (treatment as usual). PSI intervention was found to be effective in increasing caregivers' scientific knowledge on the illness.
Keywords: Caregivers, knowledge, psychosocial intervention, schizophrenia
|How to cite this URL:|
Shetty KV, Janardhana N, Math SB, Marimuthu P, Rajkumar RP. Empowering the caregivers of persons with schizophrenia – A psychosocial approach. Arch Ment Health [Epub ahead of print] [cited 2021 Dec 7]. Available from: https://www.amhonline.org/preprintarticle.asp?id=330926
| Introduction|| |
Caregivers are involved in all aspects of managing and coping with mental illness, including psychopathology, behavioral patterns, and intervention. Caregivers' knowledge about schizophrenia is relevant to many areas of psychosocial research. As an independent variable, knowledge on mental illness can be studied as a determinant of help-seeking tendencies, a predictor of outcome of treatment and adherence among patients and family members. Lack of knowledge among family members about mental illness may lead to delay in treatment, or may result in the practice of various nonformal treatment methods, and may also lead to increased risk of relapse. When faced with the “difficult” behaviors of an affected patient, caregivers often progress through a variety of attributions regarding the cause of the patient's illness, starting from self-blame and ending at more biologically based explanations.
Cultural influences on caregivers' knowledge and attitude toward mental illness need to be addressed. Empirical research in Asian and African countries has found that caregivers frequently believe that mental illness has its origin in supernatural causes., In addition, in some cultures, families have negative attitudes toward the mentally ill persons, characterized by rejection, hostility, and a negative perception of the sick individual. The burden and stigma experienced by family members may also lead them to exhibit negative attitudes toward persons with schizophrenia (PWS) and delay the process of seeking professional treatment.,
Lack of knowledge among caregivers also results in them experiencing various psychosocial problems. Some researchers have observed that lack of knowledge is associated with reduced health and ability to function among the caregivers. Caregivers may also experience reduced self-esteem and confidence, and increased levels of anxiety and depression. Hence, providing adequate knowledge to caregivers through brief educational interventions has beneficial effects on both patients and caregivers.
Interventions aimed at improving knowledge among the caregivers of PWS, which may positively impact a wide range of outcomes, including drug adherence, expressed emotion, social stigma, discrimination, relapse, and rehospitalization. These problems are experienced by a large number of caregivers in India. Numerous studies have shown the benefits of psychosocial intervention programs for this population., Thus, the proposed study intended to extend these results by developing and implementing a psychosocial intervention package (PSI) which aimed at improving the knowledge among caregivers of PWS.
| Materials and Methods|| |
The objective of this study was to develop and test the efficacy of a structured PSI package for the caregivers of PWS. The caregivers were categorized into PSI group and treatment as usual (TAU) group, and a total of eighty caregivers (each group: 40) were recruited.
Inclusion criteria: Include caregivers of a person with schizophrenia, who were 18 years and above and has been providing care for more than 1 year. Caregivers who were fluent in Kannada, Telugu, or English language were chosen, and the International Classification of Diseases-10 criteria were used for diagnosis confirmation.
The sociodemographic interview schedule for the patients and caregivers was assessed. The Knowledge about Schizophrenia Interview (KASI) was used to elicit the caregiver's knowledge on schizophrenia. The Mini-International Neuropsychiatric Interview 6.0 was used to screen for any comorbidities.
The study was approved by the institute ethics committee. Ref: No: DO/SUB-COMMITTEE/2012/SL. NO.17, Behavioural Sciences, NIMHANS, Bengaluru, India. The informed consent was taken from the PWS and their caregivers. The names of the participants were kept confidential.
All analyses were performed by using SPSS 21(IBM Statistical Package for the Social Sciences (Version 21), IBM United Kingdom Limited, Surrey, UK). Mean and standard deviation and frequency tests were used. Repeated measures analysis of variance, independent test, and paired t-test were performed.
Details on psychosocial intervention program
Based on the review of the literature and the inputs drawn from experts on the subject, the framework of the PSI was developed.,,,,, The process of development and validation of PSI program took place through the following five steps: (1) program development, (2) face and content validation, (3) results of face and content validation, (4) modification in PSI program, and (5) consensual validation. Nine experienced mental health professionals have validated the intervention program. Ten-day PSI program consists of ten sessions, and each session of the program has separate methodology, social work principles, and techniques. The PSI mainly covers psychoeducation (6 sessions), communication training (2 sessions), caregivers' stress management (1 session), and introduction, conclusion, summary, and referral service (2 sessions). The specific details on ten sessions of PSI are mentioned in [Table 1].
| Results|| |
Sociodemographic data of caregivers, and persons with schizophrenia
Majority of the caregivers (50%) were in the age group of 50 and above years in both the control and experimental groups, and the majority (75 %) of the caregivers were women. The age of onset of schizophrenia in the control group was 27.87 years, whereas in the experimental group, it was 27.85 years. Majority of the participants (87.5%) in both the groups reported drug default as the main reason for their relapse.
[Table 2] depicts the pairwise analysis of caregivers' knowledge on schizophrenia in pre- and postassessments of the control group (TAU). Barring symptomatology (t = 2.78; P = 0.009), the mean scores at both pre- and postassessments for all other domains such as diagnosis, etiology, medication, course and outcome, and management were almost the same, which resulted in statistically nonsignificant difference between the pre- and postassessments of the control group (TAU) on knowledge about the illness (schizophrenia) in these domains.
|Table 2: Pairwise analysis for caregivers' knowledge on schizophrenia in control groups (TAU)|
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[Table 3] describes the pairwise analysis of caregivers' knowledge on schizophrenia in pre- and postassessments of the intervention group. There was a significant increase in the knowledge level of the caregivers about the illness between the pre- and postassessments in all the domains of the scale used. The domain-wise analysis revealed categorically as follows: diagnosis (t = ‒10.73; P = 0.000), symptomatology (t = ‒13.53; P = 0.000), etiology (t = ‒10.04; P = 0.000), medication (t = ‒9.01; P = 0.000), course and outcome (t = ‒19.43; P = 0.000), and management (t = ‒18.36; P = 0.000). Even on the total score of KASI, the participants were found to differ significantly (t = ‒16.64; P = 0.000) at two levels of the assessments.
|Table 3: Pairwise analysis of caregivers' knowledge on schizophrenia in intervention group|
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[Figure 1]a, [Figure 1]b, [Figure 1]c, [Figure 1]d, [Figure 1]e, [Figure 1]f, [Figure 1]g depicts the comparison on caregiver's knowledge about schizophrenia (KASI) between intervention and control (TAU) groups though RMANOVA. There was a significant change in pre- and postscores of the intervention group on caregivers' knowledge about schizophrenia when compared to the control (TAU) group whose scores on this variable remained comparatively the same at pre- and postassessments.
|Figure 1: Caregivers' knowledge on schizophrenia comparison through RMANOVA. (a) Profile plots of diagnosis. (b) Profile plots of symptomatology. (c) Profile plots of etiology. (d) Profile plots of medication. (e) Profile plots of course and outcome. (f) Profile plots of management. (g) Profile plots of the Knowledge about Schizophrenia Interview total score|
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| Discussion|| |
The results of the current study are consistent with various Indian and Western studies. A randomized controlled trial on psychoeducational intervention for caregivers of schizophrenia found that structured psychoeducational intervention was significantly better than routine care. A meta-analysis of 53 randomized controlled trials established that, compared to routine care, adjunctive family interventions enhanced caregivers' knowledge which helped to reduce the frequency of relapse and risk of rehospitalization while encouraging compliance with treatment among PWS. Another study showed that PSI enhanced caregivers' knowledge and reduced negative attitude of caregivers toward their patients. Our study findings were supported by another randomized controlled trial conducted by Chatterjee et al. in three Indian states and indicates the implications of family psycho-education in examining the effectiveness of treatment outcomes among schizophrenia patients.
The current study's multimodal interventions may have caused changes in the caregivers' knowledge and behaviors toward their patients. Other factors that might have influenced these changes among the caregivers are (1) the interventions were delivered in very simple and understandable local languages, (2) the researcher avoided jargon and technical terms, (3) during each session, there was a discussion wherein the caregivers' doubts were clarified and even they were allowed to share their ideas and suggestions that were useful to others in the group, and (4) at the end of intervention, the participants were given take-home messages for better caregiving, ensuring regular compliance to medication, handling stressful situations and not showing negative attitude toward the patient, and using adaptive behaviors while looking after the patient at home and these findings of the study corroborate with previous studies.,
A meta-analysis of 44 randomized controlled trials, which examined the efficacy of psychoeducation added to routine care, found that noncompliance, relapse, and readmission were reduced in the intervention group. Culturally adopted family interventions were superior to Western-derived treatments in a review of randomized controlled trials on psychosocial treatment of schizophrenia;, such programs inform and assist caregivers to recognize early signs of relapse, thus making the management of relapse more empowered and less traumatic.
Parallel findings are reported by many Asian studies. A randomized controlled trial from Pakistan on psychoeducation to families of schizophrenia found that psychoeducation greatly helped the caregivers in understanding their patients' illness status. Chinese studies also have shown more positive effects in favor of psychoeducation intervention to caregivers of schizophrenia. Another study from Thailand mentioned that psychoeducational program on schizophrenia increased the knowledge and shaped the positive attitude of caregivers toward their PWS. Effective implementation of a structured psychoeducation program among the caregivers of PWS in Malaysian population established the potential to improve the outcome of patients' care.
Although conducted in a tertiary health center, the results of this study are of public health importance, as the interventions developed by our group have been developed locally. Because of this, they are culturally appropriate, acceptable to the local community, and available in the local language. In addition, our intervention package is relatively brief and can easily be taught to health-care workers and community volunteers or caregivers outside a hospital setting. A recent meta-analysis of patients from low- and middle-income countries has found that interventions of this kind, when delivered in the primary care or community setting, can improve patient functioning and reduce the risk of repeated hospital admissions. Furthermore, the provision of adequate knowledge can help to minimize caregiver burden and reduce the stigma associated with severe mental illness in the community.
Due to practical difficulties, the sample size was restricted to a small number and the use of double-blinding technique would have controlled the biases in the assessment as well as the intervention. There were totally 15 dropouts in both the groups for various practical reasons.
| Conclusion|| |
Many caregivers and persons with mental illness need PSIs to achieve optimum functioning. This study has demonstrated that PSI was the major mechanism to increase scientific knowledge about schizophrenia among the caregiver.
The authors are grateful to all the patients and family members.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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Kannappa V Shetty,
Department of Psychiatric Social Work, Dharwad Institute of Mental Health and Neuro Sciences, Dharwad, Karnataka
Source of Support: None, Conflict of Interest: None
[Table 1], [Table 2], [Table 3]
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