|Year : 2021 | Volume
| Issue : 3 | Page : 207-214
Human Rights and Adherence to Treatment in Patients with Severe Mental Illness: Mental Healthcare Act 2017 Perspective
Ira Domun1, Ajeet Sidana1, Subhash Das1, Shikha Tyagi1, Jasmin Garg2, Nitin Gupta3
1 Department of Psychiatry, Government Medical College and Hospital, Chandigarh, India
2 Department of Psychiatry, Government Medical College and Hospital, Chandigarh; Department of Psychiatry, Government Medical College and Hospital, Patiala, Punjab, India
3 Department of Psychiatry, Government Medical College and Hospital; Consultant Psychiatrist, Gupta Mind Healing and Counselling Centre, Chandigarh, India
|Date of Submission||30-Nov-2021|
|Date of Decision||07-Dec-2021|
|Date of Acceptance||10-Dec-2021|
|Date of Web Publication||23-Dec-2021|
Dr. Ira Domun
Department of Psychiatry, Government Medical College and Hospital, Sector 32, Chandigarh - 160 030
Source of Support: None, Conflict of Interest: None
Background: Mental Healthcare Act (MHCA) has been implemented on May 29, 2018. Patients with mental illness show high rates of medication nonadherence as well as human rights violation. Hence, it is important to study the impact of this new law on persons with mental illnesses (PMI) and the human rights awareness with emphasis on the two modes of admissions, i.e., supported and independent. Aim: Influence of MHCA, 2017 on medication adherence in patients with severe mental illness (SMI) admitted under-supported and independent category and its correlation with human rights awareness of PMI. Material and Methods: Patients diagnosed with SMI (NIMH definition, 2006) were admitted to the psychiatry ward. Baseline sociodemographic, psychopathology severity, global functioning, adherence rates, insight, and human rights awareness were assessed. Patients were divided into independent and supported groups. Weekly assessments were done during admission, subsequent assessments were done post discharge at week 1 and week 6. It was a prospective follow-up in design. Results: A total of 65 patients were included. The emotional needs dimension of human rights showed P < 0.01 at baseline as well as final follow-up. Statistically significant correlation was seen in human rights awareness and adherence at baseline in the independent admission group (IAG). Medication Adherence Rating Scale (MARS) score and Clinician Rating Scale score were lower (4.29 ± 2.13; 4.06 ± 1.73 and 3.38 ± 1.98; 3.26 ± 1.91) in supported admission group (SAG). Insight showed a statistically significant higher value in IAG than SAG (12.80 ± 7.26 and 8.18 ± 6.96) at baseline. Conclusion: No significant difference could be seen in illness specifiers and adherence patterns between the two groups. Findings reflect statistically lower fulfillment of emotional needs in SAG and positive correlation between medication adherence and human rights awareness. Therefore, adherence is an important determinant of human rights awareness.
Keywords: Adherence, human rights awareness, India, Mental Healthcare Act 2017, Severe Mental Illness
|How to cite this article:|
Domun I, Sidana A, Das S, Tyagi S, Garg J, Gupta N. Human Rights and Adherence to Treatment in Patients with Severe Mental Illness: Mental Healthcare Act 2017 Perspective. World Soc Psychiatry 2021;3:207-14
|How to cite this URL:|
Domun I, Sidana A, Das S, Tyagi S, Garg J, Gupta N. Human Rights and Adherence to Treatment in Patients with Severe Mental Illness: Mental Healthcare Act 2017 Perspective. World Soc Psychiatry [serial online] 2021 [cited 2022 Jan 27];3:207-14. Available from: https://www.worldsocpsychiatry.org/text.asp?2021/3/3/207/333434
| Introduction|| |
Severe mental illness (SMI) comprises mental disorders that are chronic and highly disabling. SMI typically includes the disorders such as schizophrenia and bipolar affective disorders (BPAD), as well as unipolar depression. As per the National Mental Health Survey (NMHS), 2015–2016, nearly 1.9% of the population have been affected with severe mental disorders in their lifetime and 0.8% have been identified to be currently affected with a severe mental disorder.
The course of SMI is such, which requires strict adherence to psychotropic medications over prolonged periods. Adherence to medication is of extreme importance in the management of chronic diseases. Adherence broadly means the degree to which a patient agrees with the advice given by a health care provider.
Nonadherence has commonly been reported to occur in all the chronic illnesses. In a meta-analysis of 569 studies, the average rate of nonadherence in chronic medical illnesses was reported to be 24.6%. It was highest in diabetes mellitus (32.5%), followed by cancer (20.9%), gastrointestinal disorders (19.6%), arthritis (18.8%), and AIDS (11.7%). A meta-analysis reported rates of nonadherence ~ 49% in chronic mental illness. The studies available from India have been mostly cross-sectional and additionally are based on patients recruited from outpatients department (OPD) settings.,,,
In order to safeguard the rights of persons with mental illness (PMI), the Government of India passed the Mental Healthcare Act (MHCA), 2017, which was formally adopted as per gazette notification no. 1960, May 29, 2018. This Act empowers PMI to take treatment-related decisions. If a person (including PMI) is able to understand the information for decisions of admission, treatment or personal assistance or appreciate reasonably foreseeable consequences of decision or communicate the decision by means of speech, expression, or gesture, then he/she is deemed to have the capacity to make a decision regarding mental healthcare treatment and is eligible for admissions on an independent basis. Therefore, as per MHCA, there are two kinds of admissions, i.e., “independent” and “supported” based on the mental capacity of patients with respect to treatment-related decisions, additionally, if a patient has high support needs or poses a risk to self/others patient shall be admitted under supported admissions section of the act. With this backdrop, 3 years since the passing of the MHCA, 2017 we need to take a critical look so that PMI get benefitted and their treatment and care are facilitated. Internationally, various outcomes such as duration of admission, adherence, and satisfaction have been reviewed in voluntary versus involuntary admissions, however, national data is lacking.
The persons with SMI are vulnerable to abuse of their basic human rights. Despite India being a signatory in various international conventions such as UNCRPD as well as national law in place, to safeguard the human rights of psychiatric patients and having a national legislation for the same, violation of human rights is evident from the fact that patients continue to be kept under inhuman conditions in mental asylums and the community, such as the atrocity of Erwadi Dargah.
Since there has been a paradigm shift from MHA, 1987 to MHCA 2017, in terms of human rights promotion, duration of admission, advanced directives, nominated representative and capacity and risk assessment determining the type of admission and empowerment of PMI to choose treatment, whereas earlier the assessment was solely risk based. Therefore, this study was planned to prospectively assess the influence of MHCA, 2017 on adherence to psychotropics in patients with SMI and the relationship with human rights admitted in a tertiary care hospital.
| Material and Methods|| |
This study was prospective, follow-up, and comparative in nature. The participants were recruited from the in-patient ward of the Department of Psychiatry of a tertiary care teaching hospital located in a prominent city of North India. Patients were admitted after detailed evaluation either to OPD or 24 × 7 emergency services, after discussion with a senior consultant. Capacity was assessed at the time of admission in all patients and if deemed to be lacking capacity or requiring high support needs, another mental health professional was asked to independently reassess the capacity. Following admission, weekly mental capacity was assessed. Patients were followed up regularly and further plan of management was updated accordingly.
Patients with a diagnosis of SMI as per the National Institute of Mental Health, UK, which includes patients of psychotic and affective illnesses as per the International Classification of Diseases 10, with the duration of treatment >2 years and Global Assessment of Functioning (GAF) score <50; age 18–60 years of either gender, accompanied by primary care giver and willing to give written informed consent for the study and in case of supported admissions, those whose NR was willing to give written informed consent were included.
Patients with comorbid intellectual disability, dementia or organic brain syndrome, comorbid severe and unstable medical/surgical illness, and substance dependence (except nicotine and caffeine) were excluded.
The study analyzed 65 consecutive patients fulfilling inclusion and exclusion criteria admitted to psychiatry ward; of which 31 were independent admissions and 34 were supported admissions as per MHCA, 2017, from January 2019 to July 2020.
Following admission, patients were assessed within 24 h. Baseline assessment for patient included recording of (i) their sociodemographic and clinical details; (ii) GAF; (iii) mental capacity according to the provisions of MHCA (2017); (iv) psychopathology using Brief Psychiatric Rating Scale 4.0 (BPRS); (v) insight using the Schedule for Insight-Expanded Version (SAI-E); and (vi) adherence on all dimensions with Medication Adherence Rating Scale (MARS) and Clinician Rating Scale (CRS). Human rights awareness was assessed at baseline, discharge and postdischarge at 6 weeks to ascertain the relationship with adherence if any. Human rights awareness was assessed using Needs Assessment Questionnaire, which has 58 items and encompasses physical, emotional, social, religious, and ethical needs dimensions. Part B of the scale deals with “Taking the Human Rights Temperature of your community” and consists of 25 questions. As per literature, cut-off scores to determine adherent or not, have been set as MARS ≥6 and CRS ≥5.,
Assessments were also done weekly during ward stay, at the time of discharge, postdischarge week-1 and week-6 from the psychiatry ward. Since patients were discharged according to clinical improvement, there were a variable number of participants at each week, in the results described below. The study was approved by the Ethical Review Committee of the Institution and registered with the Clinical Trials Registry of India.
The data were coded and analyzed using SPSS software version 22.0 (IBM Corp., Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY, USA: IBM Corp). Mean, standard deviation (SD) for ordinal variables and frequency tabulation for nominal variables were done. The level of significance (P value) was kept at 0.05. Frequency tabulation for nominal variables, while mean and SD for ordinal variable was computed. Comparative statistics were applied across the two groups in the form of Chi-square test for nominal variables and Student's (unpaired) t-test for ordinal variables.
| Results|| |
A total of 65 patients were inducted, with 31 participants in independent admission group (IAG) and 34 participants in supported admission group (SAG).
[Table 1] depicts the socio-demographic details of the two groups. SAG shows statistically significant lower income than the IAG.
|Table 1: Comparison of sociodemographic and clinical profiles of independent and supported admission patient groups|
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During admission, capacity was assessed weekly. Patients converted, from supported to independent category on a mean 2.55-week duration, though 2 patients (BPAD, current episode mania - 1, Schizophrenia - 1) continued in supported group, till the end of follow-up. However, the converted patients were assessed as per their baseline group only.
GAF score was assessed. Maximum patients belonged to 31–40 categories (21.53% and 15.38%). However, a higher number of patients in supported group came under 21–30 category (13.84% and 20%). The Chi-square value 6.04, and P = 0.196 was seen between the groups.
Maximum patients were of BPAD (F31), (IAG-12, SAG-16). The diagnosis of “Other psychotic disorder (F28)” includes 6 patients in each group, 10 patients with Schizophrenia (F20) were there in both the groups combined (IAG-7, SAG-3), and there were a total of 11 patients with unipolar recurrent depression (F33) (IAG-4, SAG-3), persistent delusion disorder (F22) (IAG-1,2) and 1 case is of schizo-affective disorder (F25) in IAG.
[Table 2] shows that during the period of admission and postdischarge follow-up, both the groups have shown a significant decrement in BPRS scores, and hence psychopathology. However, the difference between two groups is not statistically significant.
|Table 2: Comparison of scores between the two groups on clinician and patient rated adherence and insight on Medication Adherence Rating Scale, Clinician Rating Scale and Schedule for Insight-Expanded Version respectively|
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A score ≥6 on MARS and on SAI-E a score ≥ to 11 is co-related with a good level of adherence and insight, respectively., The insight as assessed on SAI-E, showed a statistically significant higher value in IAG (12.80 >8.18) at baseline. Findings on these three scales have shown progressive improvement in adherence and insight, however, on subsequent weeks, the differences remained statistically nonsignificant.
Figure 1 depicts a comparison of both the groups for the measures of psychopathology, adherence and insight. The suffix “s” represents findings of supported group and suffix “i” represents findings of independent group. As is represented, the baseline scores being favorable in the independent group, with leveling towards the end of the study period. The psychopathology as measured on BPRS declines, whereas insight and adherence improve.
Among the various domains, i.e., physical, emotional, social, ethical, and general, there is a significant difference in emotional needs domain both at baseline and postdischarge week 6 between the two groups
[Table 4] shows, adherence and human right awareness have a statistically significant, linear relationship at baseline in the independent group (r = 0.4 at P < 0.05).
|Table 4: Correlation of adherence levels (as per Medication Adherence Rating Scale) with human-rights awareness (as per needs assessment questionnaire)|
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The direction of the relationship is positive, i.e., adherence and human right awareness are positively correlated as well as statistically significant at baseline in independent group only.
The strength, of the association, is low in the first subset of data, i.e., independent baseline scores. However, in SAG, there is high correlation as r = 0.7, similarly, there is a moderate correlation in supported group, at postdischarge week 1.
| Discussion|| |
The index study was carried out to see the influence of MHCA 2017 on adherence to treatment and human rights of patients with SMI.
Nonadherence rates of chronic preventive maintenance medication in mental illness range from 20% to 44% in unipolar depression, BPAD, and schizophrenia.,,, Keeping the definition of nonadherence as CRS ≤5, as per literature, a total of 22 (33.84%) and 25 (38.46%) subjects were nonadherent at baseline in both the groups, respectively, and in MARS, keeping the cut-off as ≤6, a total of 22 (33.84%) and 28 (43.07%) patients in independent and supported group, came out to be nonadherent, respectively. These rates are in accordance with previous literature, both national and international.,,, One international study of involuntarily admitted older patients found that they were statistically less likely to be adherent to psychotropics at 1-year follow-up. Since adherence is anticipated to be influenced by the provisions of the new mental health legislation provisions, further research is required in this area, to reach any conclusive inference.
As evident from [Table 2], wherein insight levels of both the groups, show a highly significant difference (P = 0.01) at baseline; hence it can be inferred that independent group had a significantly higher level of insight at baseline. Baseline higher level of insight could be attributed to the longer duration of illness, lower psychopathology and higher adherence rates (66.16%) in IAG, however, in comparison to SAG these findings were not statistically significant. It can also be inferred that insight may have a bearing on capacity to make treatment-related decisions and seek admission for illness. [Table 2] depicts the severity of psychopathology seen in the patients, as evaluated on BPRS-4.0. Reaching the final follow-up at week 6 postdischarge, psychopathology is highly settled in both the groups showing a 43% and 42% improvement respectively [Table 3]. This finding is consistent with multiple studies, both national and international.,,, These findings reflect that no matter the nature of admission, patients benefit from admission and treatment.
|Table 3: Needs assessment scores of both the groups at baseline and postdischarge (week 6)|
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In our study, it was seen that patients with higher psychopathology (on BPRS) had significantly lower rates of adherence (on CRS, MARS) and lower insight at baseline. Subsequently, insight and adherence improved, and psychopathology declined in both the groups. This finding is seconded by several national and international studies.,,,
Given the inherent vulnerability of PMI and the associated stigma, it is vital that human rights are acknowledged, identified, and protected for this population. Reports show that individuals with mental health issues are maltreated and marginalized due to the nature of their illness. Adherence to psychotropics promotes disease control, prevents relapses and hospitalization, improves quality of life, and improves employment rates. As a consequence, adherence may improve the human rights awareness among the SMI patients.
Human rights violation impairs the emotional, psychological, physical, and spiritual well-being of individuals with mental disorders but also may influence potential service recipients' access to mental health services. In terms of emotional needs dimension, there was statistically significant difference seen in IAG and SAG, both at baseline and at the final follow-up. At baseline, this finding could be confounded by presence of florid psychopathology. However, since this finding was seen in the final follow-up also, it could be attributed to denying of emotional support by the caregivers. As per national studies using this instrument, statistically significant difference was seen in physical and emotional needs dimensions, however, the comparing groups were “literate and illiterate patients” and the study was cross-sectional. The emotional needs of PMI are not fulfilled, as they are often either detained in large institutions, isolated from society, and far from families and loved ones.
MARS score and Need Assessment Questionnaire score were compared at three points during the study, i.e., baseline, postdischarge week 1 and week 6, as depicted in [Table 4]. The findings showed a statistically significant positive correlation, although low between the two parameters at baseline in an independent group. However, in supported group at baseline, there is moderate correlation as r = 0.7, similarly, there is moderate correlation in supported group, at postdischarge week 1, but not significant statistically. Hence, there is low-moderate correlation between adherence and human right awareness, varying at different time points and there is also inter-group variability. There are no data in literature to compare this finding. Further research in this area is required, however, the preliminary data from our study shows that ensuring adherence, is a positive step in the direction of safeguarding human rights.
In all parameters, the IAG was at a benefit when compared to SAG at baseline, however, the difference leveled up by the end of the follow-up period [Figure 2]. It could be inferred that MHCA, helped the treating team to identify the patients requiring more intense bio-psycho-social interventions, which in turn helped to achieve similar outcomes in both groups.
The study has strengths of being are prospective design, longitudinal and comparative in nature. Patients in independent and supported groups were compared multi-dimensionally including on psychopathology, functionality, adherence, and insight on standardized scales (GAF, MARS, CRS, BPRS, and SAI-E). The interplay of human rights and adherence was also explored. However, the study has few limitations in the form of small sample size and short follow-up period. There was no literature to compare the impact of MHCA 2017 on patients with SMI.
| Conclusion|| |
Positive correlation of adherence and human rights awareness was a pivotal finding of this study, implying that, ensuring adherence may improve the empowerment of human rights of patients with SMI. The SAG showed statistically significant deficits in emotional needs perception dimension in human rights. It can be concluded from the index study that patients with “SMI” admitted as independent and supported admissions under Mental Health Care Act, 2017, had a statistically significant difference in terms of income and, baseline insight being higher in IAG. However, these differences did not remain consistent during the follow-up period. It also indicates that once the patient admitted to psychiatry ward, the type of admission, although may vary in clinical parameters, adherence, and human rights awareness levels, admission with strict compliance to MHCa ensures improvement in both groups.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4]