|AWARD PAPER: DR. GC BORAL AWARD PAPER
|Year : 2019 | Volume
| Issue : 1 | Page : 24-31
Comparative survey of factors associated with illness-related knowledge among patients with severe mental illness and their caregivers
Snehil Gupta, Mamta Sood, Rohit Verma, Jawahar Singh
Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, India
|Date of Submission||12-Dec-2018|
|Date of Acceptance||14-Dec-2018|
|Date of Web Publication||27-Mar-2019|
Dr. Mamta Sood
Department of Psychiatry, All India Institute of Medical Sciences, Ansari Nagar, New Delhi - 110 029
Source of Support: None, Conflict of Interest: None
Background: Knowledge about the illness and treatment is important for treatment adherence and positive outcomes in patients with severe mental illnesses (SMIs) and their caregivers. The current study aimed at comparing the knowledge of the patients with SMI and their caregivers, and its relationship with their sociodemographic characteristics. Methodology: A cross-sectional, observational study conducted in the outpatient department of a tertiary care general hospital and comprised 50 dyads of patients with SMIs and their caregivers. Information was collected by a semi-structured questionnaire. Comparison of knowledge between groups was performed using the Chi-square test, and the relationship of knowledge with their sociodemographic variables was analyzed using logistic regression test. Results: There was a lack of knowledge among participating dyads for most of the illness- and treatment-related variables. A significant difference was observed between the two groups in regard to their knowledge about the name of the illness, how medical comorbidity and comorbid substance use affect psychiatric illness, brand name of the medicine, adverse effect, duration of treatment, role of investigation in diagnosis and treatment, and psychosocial rehabilitation (P < 0.001). The difference in knowledge was also observed regarding the formulation of medicine other than tablets and mechanism of its action (P < 0.05). Dyads with higher socioeconomic status had more knowledge about some but not all aspects of their illness. Conclusion: The patients and their caregivers lacked knowledge about many important illnesses-related variables. It is important to psychoeducate in routine clinical practice.
Keywords: Caregivers, illness-related knowledge, patients, psychosis, severe mental illness
|How to cite this article:|
Gupta S, Sood M, Verma R, Singh J. Comparative survey of factors associated with illness-related knowledge among patients with severe mental illness and their caregivers. Indian J Soc Psychiatry 2019;35:24-31
|How to cite this URL:|
Gupta S, Sood M, Verma R, Singh J. Comparative survey of factors associated with illness-related knowledge among patients with severe mental illness and their caregivers. Indian J Soc Psychiatry [serial online] 2019 [cited 2019 Jun 18];35:24-31. Available from: http://www.indjsp.org/text.asp?2019/35/1/24/254990
| Introduction|| |
Severe mental illnesses (SMIs) are associated with significant disability, morbidity and mortality, and stigma.,,, SMIs lead to an increased illness-related burden in both the patients and their caregivers. The prevalence of SMIs has been reported to be 1.3–2.3/1000. The national mental health survey of India reports the lifetime and current prevalence rate of SMIs in general populations to be 2% and 0.8%, respectively, while the prevalence rates from the tertiary care general hospital setting among the first-contact patients have been reported to be 21%.
Knowledge of the patients and their caregivers about the illness has been found to be important in treatment adherence and outcome. Studies have shown that psychoeducation of family members and patients with SMIs is associated with better treatment outcome., However, studies from developing countries highlight that mental health professionals usually do not involve a family member in treatment process and provide very less information to them. The same holds true for patients as well.,,
There are very few studies globally and none from India, which have looked into the illness-related knowledge of the treatment-seeking population., The available studies have mostly looked into the knowledge related to etiology, clinical characteristics, and some extent about the treatment;, however, an important aspect of their knowledge about various psychosocial interventions has been rarely studied. Moreover, the available studies have mainly assessed the knowledge of the caregivers but not that of the patients. Therefore, the present study aimed at assessing the knowledge of the patients with SMIs and their caregivers about the illness, and its treatment including aspects of psychological interventions. It also attempted to study the relationship of this knowledge with their sociodemographic characteristics.
| Methodology|| |
Fifty dyads of patients and their caregivers were recruited from the outpatient department (OPD) of a general hospital psychiatry unit of a tertiary care teaching medical school from North India. The study was cross-sectional and observational in design.
Participants were recruited over 9 months (April–December 2017). The patients aged 18–65 years, meeting diagnostic criteria for nonorganic psychosis (F.20-F.29 except F.21 – schizotypal personality disorder and F.23 – acute transient psychotic disorders) of International Classification of Diseases-Tenth Revision (WHO, 1992), duration of illness ≥2 years, receiving treatment for at least past 6 months from our psychiatry OPD, and scores <4 (representing mild severity of the symptoms in all the items of the scale) in Brief Psychiatric Rating Scale (BPRS), and consenting to participate in the study were included in the study. The caregivers aged 18–65 years, living with the patient for at least 1 year, and consenting to participate in the study were included in the study.
The study had the approval of the Institute Ethics Committee (IEC – 139/07.04.2017).
A semi-structured questionnaire was developed to collect information about sociodemographic characteristics of the dyads (a patient and his/her caregiver) such as name, age, sex, marital status, education, occupation, residence, and family types; clinical details such as total duration of the illness, duration of treatment, and number and brand names of the medicines being received; and knowledge of the dyads about the illness and treatment such as name of the illness, cardinal symptoms, how to manage psychiatric emergency situation, etiology, prevalent myths in the society related to the illness, effect of physical illness and substance use on the illness, details of the medicines being prescribed, other available treatment options, psychosocial rehabilitation, and disability benefits.
Categorical data were represented by frequencies (percentages) while the continuous data were represented by mean (standard deviations) and median (interquartile range [IQR]). Comparison of illness-related knowledge (difference of proportions between the two groups) was done using the Chi-square/Fishers' exact test. Logistic regression analysis was performed to analyze the relationship between various sociodemographic characteristics (independent variables) and illness-related variables (dependent variables); those variables which were found statistically significant at P = 0.25 were subjected to multivariate analysis. For this analysis, 95% confidence interval and P < 0.05 were considered statistically significant. Missing value imputation was not done. The analysis was done using SPSS version 21 (IBM Corp. Armonk, NY).
| Results|| |
A total of 75 patients and their caregivers who visited the psychiatry OPD were approached. Out of them, 25 dyads were excluded (ten patients were having BPRS score more than 4 in at least one of the domains, ten caregivers were staying with the patients for <1 year, and five dyads were not willing to participate in the study) from the study, thus a total of 50 dyads were recruited in the study.
Sociodemographic characteristics of the patients and their caregivers
The mean age of the patients was 34 (9.6) years [Table 1]. Males had a slightly higher representation (60%) as compared to females (40%). Half of the patients were married and about 62% were educated up to higher secondary (12th grade) while remaining 38% were graduates/postgraduates. Half of the patients were skilled workers, homemakers, or professionals. The median monthly per capita income of the patients was 6500 Indian National Rupees (INR) (IQR-3750, 20,000). About 3/4th of the patients hailed from urban area, and an equal proportion belonged to the nuclear family.
|Table 1: Sociodemographic characteristics of patients and their caregivers|
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The mean age of the caregivers was 46.3 (12.2) years. More than half of them were females. Eighty-four percent of them were married and staying with their spouses. More than half of the caregivers had studied up to 12th grade. Most (84%) were involved in skilled work, homemaking, business, or professional work.
Clinical characteristics of the patients
The most common clinical diagnosis of the patients was schizophrenia (F.20) (48%), followed by psychosis not otherwise specified (F.29) (34%). The median duration of the illness and treatment was 8 years (5, 10.4) and 6 years (3, 9.5), respectively. On average, the patients were receiving at least two psychotropic medications.
Knowledge about the illness and difference in knowledge between the two groups
Knowledge about the clinical features
Twenty-two percent of the patients were aware about the name of psychiatric illness, and they were suffering from while the only 38% of the caregivers knew it (P < 0.001) [Table 2]. Positive symptoms were the most commonly reported cardinal symptoms (70% [n = 35] of patients and 72% [n = 36] of caregivers) of the illness by both the groups (followed by biological and behavioral symptoms), though the difference was not statistically significant. Roughly, an equal proportion of the patients (n = 13, 26%) and their caregivers (n = 12, 24%) were aware about the neurobiological (neurochemical dysregulation) or psychological (due to mental stress or mental tension) etiology of the illness, followed by environmental (22% [n = 11] of patients and 34% [n = 17] of caregivers), genetic (6% [n = 3] of patients and 10% [n = 5] of caregivers), religious (4% [n = 2] of patients and 6% [n = 3] of caregivers), and being over ambitious (10% [n = 5] of patients and 16% [n = 8] of caregivers), though the difference between the two groups was not significant. Twenty percent of patients and 48% of caregivers were aware about the prevalence of myths regarding mental illness, mostly the supernatural causation of the illness, in the society; however, the difference was not statistically significant. There was a significant difference between the group regarding how physical illness and substance use can affect mental illness and its treatment (P < 0.001).
|Table 2: Knowledge (yes response) of the patients (n=50) and their caregivers (n=50) about illness- and treatment-related variables|
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Knowledge about the medications
Only 14% of patients could report available options of giving medications other than oral tablets while 68% for the caregivers (P = 0.03) were aware about the same. Although a significant proportion of the patients (84%) and caregivers (94%) was aware about the numbers of medicines being received, only about half of the patients (44%) and caregivers (50%) could tell at least one brand name of the medicine (P < 0.001). About 2/3rd of the patients and caregivers reported being aware about the effect of the medicines and the most commonly reported mechanism of action was induction of sleep (44% [n = 22] of patients and 50% [n = 25] of caregivers). Only about 30% (n = 15) of the patients and 38% (n = 19) of the caregivers could tell about its neurobiological mechanism of the action, and the difference between the two groups was statistically significant (P = 0.02). Regarding knowledge about the adverse effects of the medicines, there was a significant difference (P < 0.001) between the two groups (42% of patients and 48% of caregivers).
Knowledge about the management (including psychosocial interventions)
Fifty-four percent of the patients and 82% of the caregivers were aware about how to manage emergency situations arising out of the mental illness (P = 0.15); the most frequently cited response was to visit a hospital. Forty percent of the patients reported that investigation is not mandatory for making the diagnosis of the mental illness while 50% of the caregivers reported the same, which had a statistically significant difference (P < 0.001). Similarly, there was a significant difference between the two groups regarding the role of investigations (serum valproate or lithium level, complete blood counts, and metabolic profile) in the treatment and monitoring the adverse effects of the medicines (14% in patients and 28% in caregivers); however, the awareness was low in both the groups in this context. About 34% of the patients and 50% of the caregivers were aware about the duration of the treatment, and the difference between the two groups was statistically significant (P < 0.001). About 58% (n = 28) of patients and 72% (n = 36) of caregivers were aware about other treatment modalities apart from the medicines, while 34% (n = 17) of patients and 40% (n = 20) of caregivers had knowledge about various available psychological interventions (psychotherapy, coping, or social or cognitive skill training); however, the difference was not statistically significant. Similarly, there was no difference between the two groups regarding other modes of treatment (social and family support, keeping patient engaged, etc.).
There was a significant difference (P < 0.001) in regard to the awareness for psychosocial rehabilitation in the form of physical or occupational or social rehabilitation (34% in patients and 42% in caregivers). However, the difference was not significant for the disability benefits provided by the government (2% in patients and 18% in caregivers).
Relationship of sociodemographic characteristics of patients and their knowledge about various illness-related variables (logistic regression analysis)
Univariate logistic regression analysis showed that patients having age <35 years were more likely to know about the “positive symptoms” as the cardinal symptoms of the illness, “how to manage emergency situations pertaining to the illness,” “adverse effects” of the medicines, “role of investigation in making a diagnosis,” and “treatment options other than/apart from the medicines” [Table 3]. Although on multivariate logistic regression analysis, only latter two variables were found to be statistically significant (P < 0.05). Male gender had more likelihood to know “at least one brand name of the medicines” (P < 0.05). When it comes to education, although on univariate analysis, those educated more than 12th grades were more likely to know about the “name of the illness,” “how to manage emergency situations arising out of illness,” “duration of treatment,” “brand name of medicine,” “mechanism of action of medicine,” “adverse effects” of medicines, and the “role of investigations in knowing/monitoring the adverse effects of the medicines.” However, on multivariate analysis, significant results were obtained only for variables such as “name of the illness,” “brand name of the medicines,” and “duration of treatment” (P < 0.05). Further, on multivariate analysis, those involved in skilled work or higher level of employment were more likely to be aware about “how substance use can affect their mental illness.” (P < 0.05).
|Table 3: Relationship of sociodemographic characteristics of the patients with knowledge about various illness-related variables (logistic regression analysis)|
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It was also found that those having per capita income >6500 INR were more likely to be aware about “how to manage emergency situations arising out of illness,” “how physical health can affect mental illness,” “mechanism of action and adverse effects of medicines,” and “psychological interventions.” Although on multivariate regression analysis, knowledge about the “psychological interventions” was only found to be statistically significant (P < 0.05). Finally, those hailing from urban background were more likely to know that the “role of investigation making the diagnosis.” (P < 0.05).
Relationship of sociodemographic characteristics of the caregivers with knowledge about various illness-related variables (logistic regression analysis)
In univariate logistic regression analysis, female gender was more likely to be aware about “at least one brand name of the medicines” they were receiving, while male gender was more likely to be aware about the “treatment options other than/apart from the medicines” [Table 4]. Although on multivariate regression analysis, the above findings were not found to be significant. When it comes to the education of the caregivers, those having more than 12th grade of education was more likely to know about the “name of the illness,” “brand name of the medicines” being prescribed, “adverse effects,” and “role of investigations in knowing/monitoring the adverse effects of the medicines.” Although on multivariate logistic regression analysis, only the former two findings turned out to be significant (P < 0.05). Findings for occupation were rather inconsistent, in univariate analysis, those employed in the skilled work or higher employment were more likely to know the “role of investigation in making a diagnosis,” while those who were unskilled workers or unemployed were more likely to know about “how physical health can affect mental illness,” “treatment options other than/apart from the medicines,” and “psychological interventions.” However, on multivariate regression analysis, a significant result was observed between involvement in unskilled work or current unemployment with an increased likelihood for having knowledge about the “psychological interventions” (P < 0.05). Those having per capita income more than 6500 INR were more likely to know about the “name of the illness,” “mechanism of action of medicine and “adverse effect” of the medicines, and about “psychological interventions.” (P < 0.05).
|Table 4: Relationship of sociodemographic characteristics of the caregivers with knowledge about various illness-related variables (logistic regression analysis)|
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| Discussion|| |
The present study was conducted to assess the knowledge of patients with SMI and their caregivers about their illness and its treatment. We used a questionnaire that assessed their knowledge on a wide range of relevant clinical- and treatment-related variables and compared the difference in knowledge between the two groups. Further, we also looked into the relationship of sociodemographic characteristics of the participants with their knowledge about the mental illness.
There was a significant difference between the two groups about knowledge related to name of the illness, how to manage psychiatric emergencies arising out of the patients' illness, how the medical illness and substance use affects the mental illness, the brand name of the medicine, its preparations other than tablet, its mechanism of action and common adverse effects, duration of treatment, role of investigation making a diagnosis, role of investigations in monitoring the adverse effects of the medicines, and about various psychological interventions.
We found that only about one-fourth of the patients and about one-third of the caregivers were aware about the name of the illness that they or their family were suffering from. About two-third of the participating dyads recognized the cardinal symptoms of the illness, mostly the positive symptoms such as suspiciousness, hallucinatory behavior, and aggressiveness while majority of them were unaware about the cognitive and negative symptoms. As observed in our study, under-recognition of the latter two symptoms and delayed treatment seeking has been reported.,, Regarding managing the emergency situations and preparations of the medications other than tablets, the most common responses from the caregivers were to take the patient to the hospital while they were largely unaware other simpler techniques such as maintaining a nonconfronting attitude toward the patient or giving as or when required medications (sublingual sedatives or hypnotics). A study from a Latin America showed that family members frequently perceive a need to be informed about the coping skills to deal with the aggressive or self-harm behavior of their mentally ill family member. The current finding highlights the importance to psychoeducate the caregivers in managing such psychiatric emergencies.
Only one-fourth of the dyads had knowledge about psychobiological etiology of the illness; rest of them attributed it to the environmental factors. This finding is consistent with the previous literature. Less than half of the dyads were aware about the common adverse effects of medications and could name least one brand of the medicines. Knowledge of the fact that the level of knowledge with regard to the medicines is low and is important as this may lead to treatment nonadherence and poor outcome. Another study showed that a significant proportion of the caregivers (44%) expressed the need of counseling regarding coping with the adverse drug effects. Similarly, the knowledge about how physical illness and substance use affect the mental illness was low, as only 1/5th and 1/3rd of the patients and caregivers, respectively, were aware about it. High prevalence of physical comorbidities and substance use problems among patients with psychiatric illness (especially in patients having SMI) has been reported, which through a complex interplay lead to poor outcome of both the conditions.,,, This highlights the need to psychoeducate the patients and their caregivers about the promotive, preventive, and curative aspects of the physical illness and the importance to refrain from substance use. Further, only about one-third of the dyads were aware about various psychological interventions. A meta-analysis has shown that individual or family-based psychosocial interventions play an important role in the prevention of relapse in patients with psychosis. The poor mental health literacy about the role of psychosocial interventions in the participating dyads highlighted that nonpharmacological interventions are usually not emphasized during the treatment, a finding consistent with the previous research from South Asia. The knowledge about the various benefits provided by the government for mental illnesses was also very low among the dyads. This is in line with the finding that majority of the mental health service utilizers are ignorant about the potential benefits they are entitled to have under the Persons with Disability Act.
Regarding the relationship of knowledge about the illness and its sociodemographic determinants, dyads with age <35 years were more likely to have knowledge about the treatment options other than medicines and the role of investigations in making a diagnosis. This is consistent with a study conducted in a general population, though this finding needs further study. Male patients were more likely to have knowledge about “at least one brand name of the medicines,” which can be understood in the light that usually males of the family purchase medicines for themselves or for their family in the target population. In contrast, female patients were more likely to have knowledge about the effect of medicines, a finding requires further research. The patients and caregivers, educated above 12th standard were more likely to know about the name of the illness, duration of treatment, and one brand name of the medications. Studies from Asia have shown that higher educational level of the caregivers is associated with the information they acquire., Those patients, who were employed in skilled work (including homemakers) or professions (businessman and professionals), were more likely to know that how the mental illness is affected by substance use. However, paradoxically, caregivers, who were categorized under unemployment or unskilled worker category, were more likely to know about the psychological interventions. Categorization of most of the retired persons in unskilled occupation or currently unemployed category might have confounded this result. The patients and caregivers with per capita income more than 6500 INR were likely to be aware about the rehabilitative measures. In addition, the caregivers with higher incomes were more likely to be aware about the name of the illness, mechanism of action, and adverse effects of the medications. A previous study showed that mental health literacy is associated with the social class of an individual with people with higher social economic status (SES) having higher mental health literacy, though it is mainly governed by the educational status of an individual.
Urban background of the participants was related to the awareness that investigation is not mandatory for the diagnosis. Further, for caregivers, it was also related with the knowledge about the name of the illness and adverse effect of the medications. It can be understood in light that in India higher literacy rates are in urban areas as compared to the rural.
The present study also observed some important negative findings. For instance, variables such as education, occupation, and per capita income of the patients were not related to knowledge about some of the illness-related variables (cardinal symptoms, effect of physical health on mental illness, etiology of illness, and adverse effects of the medications). Similarly, aforementioned variables were not related to some of the important dependent variables (knowledge about cardinal symptoms of the illness, how to manage emergency situations pertaining to illness of their patient, preparations of the medicines apart from tablets, etiology, and duration of treatment) in the caregivers. These findings suggest that higher SES does not necessarily lead to higher knowledge about many important illness- and treatment-related variables.
The present study had certain limitations. The semi-structured questionnaire designed for information collection was not validated in the study population. The categorization of retired caregivers or nonworking persons under unemployed or unskilled employment might have confounded some of the results. Further qualitative analysis of the knowledge of the respondents and associated nuances could have been more informative.
| Conclusion|| |
The current study was found that the knowledge of the patients and their caregivers is poor in various aspects related to the illness and treatment, despite suffering from the illness and being on treatment for a considerable period. There have been differences between the two groups about many illness- and treatment-related variables. Patients with higher socioeconomic status had more knowledge about the name of the illness, brand name of the medications, duration of treatment, and about the intervention measures, while caregivers with higher socioeconomic status had more information about the name of the illness, brand name of the medications, effects and adverse effects of the medications, and psychosocial rehabilitation. However, the knowledge was not consistently higher across all the illness-related variables. The findings of the study have important implications for developing and applying psychoeducational modules in routine clinical practice for ensuring adherence to treatment and better treatment outcomes.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]