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    Abstract
   Introduction
    Materials and Me...
   Results
   Discussion
   Conclusion
   Acknowledgment
    References
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 Table of Contents    
ORIGINAL ARTICLE  
Year : 2015  |  Volume : 57  |  Issue : 2  |  Page : 174-180
Human rights violations among economically disadvantaged women with mental illness: An Indian perspective


1 Department of Nursing, College of Nursing, National Institute of Mental Health and Neuro Sciences (Institute of National Importance), Bengaluru, Karnataka, India
2 Department of Nursing, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
3 Department of Psychiatry, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
4 Department of Psychiatry, Vydehi Medical College, Bengaluru, Karnataka, India

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Date of Web Publication4-Jun-2015
 

   Abstract 

Background: Globally women confront manifold violations of human rights and women with poverty and mental illness are doubly disadvantaged.
Aim: The aim was to examine the influence of poverty in meeting human rights needs among recovered women with mental illness at family and community level.
Materials and Methods: This was a descriptive study carried out among randomly selected (n = 100) recovered women with mental illness at a tertiary care center. Data were collected through face-to-face interview using structured needs assessment questionnaire.
Results: Our findings revealed that below poverty line (BPL) participants were not satisfied in meeting their physical needs such as "access to safe drinking water" (χ2 = 8.994, P < 0.02), "served in the same utensils" (χ2 = 13.648, P < 0.00), had adequate food (χ2 = 11.025, P < 0.02), and allowed to use toilet facilities (χ2 = 13.565, P < 0.00). The human rights needs in emotional dimension, that is, afraid of family members (χ2 = 8.233, P < 0.04) and hurt by bad words (χ2 = 9.014, P < 0.02) were rated higher in above poverty line (APL) participants. Similarly, 88.9% of women from APL group expressed that they were discriminated and exploited by the community members (χ2 = 17.490, P < 0.00). More than three-fourths of BPL participants (76.1%) believed that there were wondering homeless mentally ill in their community (χ2 = 11.848, P < 0.01).
Conclusion: There is an urgent need to implement social welfare programs to provide employment opportunities, disability allowance, housing and other social security for women with mental illness. Further, mental health professionals play an essential role in educating the family and public regarding human rights of people with mental illness.

Keywords: Human rights, mental illness, needs assessment, poverty, women

How to cite this article:
Poreddi V, Ramachandra, Thimmaiah R, Math SB. Human rights violations among economically disadvantaged women with mental illness: An Indian perspective. Indian J Psychiatry 2015;57:174-80

How to cite this URL:
Poreddi V, Ramachandra, Thimmaiah R, Math SB. Human rights violations among economically disadvantaged women with mental illness: An Indian perspective. Indian J Psychiatry [serial online] 2015 [cited 2019 Jul 16];57:174-80. Available from: http://www.indianjpsychiatry.org/text.asp?2015/57/2/174/158182



   Introduction Top


Poverty is the greatest denial of the exercise of human rights. [1] Poverty causes human rights violations as those living in extreme poverty were not treated as human beings worthy of human rights, and are discriminated against, often exploited, marginalized and stigmatized, and denied access to rights and resources. [2] India has the world's largest number of poor people. Of its nearly 1 billion inhabitants, an estimated 350-400 million are below the poverty line (BPL), 75% of them in the rural areas. [3] Studies over the last two decade indicate a close interaction between factors associated with poverty and mental ill-health. [4] However, there have been conflicting views of whether poor socioeconomic situations create a vulnerability to developmental illnesses or whether individuals with mental illness relocate to poorer socioeconomic situations because of their illness. [5]

There is an emerging evidence from low- and middle-income countries that mental illness is strongly associated with poverty and social deprivation. [6],[7],[8] Studies from India have shown that poverty and deprivation were independently associated with the risk for common mental disorder in women and add to the sources of stress (e.g., multiple roles, unequal power relations with men) associated with womanhood. [9] Further, poverty has been described as a formidable obstacle for individuals with severe mental illness to overcome, [10] as it affects the ability to meet their basic needs, treatment seeking and to participate in educational, leisure, social, and community activities. [11] All the above findings put forward that the economic hardship affects the ability of individuals with mental illness to re-integrate into society. [12] Women's rights are grounded first in the Universal Declaration of Human Rights (UDHR) (1948), to which India is one among the countries those are signatory. India also ratified other international conventions specifically banning discriminations against women, such as the Convention on the Elimination of All Forms of Discrimination against Women and the Declaration on the Elimination of Violence against Women. In addition, at national level, India also has a Mental Health Act and the Persons with Disability Act, which provide for treatment, protection against human rights abuses, and equal opportunities for the people with mental illness.

Persons with mental disorders often suffer a wide range of human rights violations and social stigma. People can be locked away for extensive periods, sometimes even for life, despite having the capacity to decide their future and lead a life within their community. [13] Women with poverty and mental illness are doubly disadvantaged. Indian women with mental disorders reported highest levels of stigma, in addition to that associated with separation or divorce, and were especially disadvantaged since they often received no financial support from their former husbands. [14],[15],[16] Nonetheless, there were no studies from India that focused human rights violations among women with mental illness in meeting their basic needs. Thus, the present study was developed to examine the influence of poverty in meeting human rights needs among recovered women with mental illness at family and community level.


   Materials and Methods Top


Design and setting

This was a descriptive study carried out at a tertiary care center, among recovered women with mental illness from August to November 2010.

Study participants were selected through a random sampling method of the database of patients attending the outpatient department of a psychiatric hospital. All these patients had already been seen in detail by a junior resident, senior resident and consultant. They also had a detailed medical chart of their history, diagnosis, treatment and outcome on each follow-up. Those who met the inclusion criteria were interviewed. The study criteria were recovered women with mental illness with a diagnosis of either schizophrenic or mood disorders in the past, based on the criteria of the International Classification of Diseases, 10 th Revision. In the present study, recovered patients meant a score of 1 (very much improved) or 2 (much improved) on the Clinical Global Impression Improvement (CGI-I) scale (Guy, 1976). The study sample comprised 100 recovered women with mental illness and covered an age span of 18-60 years. We excluded symptomatic and cognitively impaired patients. Hence, recovered women with mental illness who are symptom-free may be the true representative of the target population because, in the absence of mental illness, they can ascertain and defend their rights.

The poverty line is defined as the amount of income required to satisfy those needs. Following definition was adopted to define BPL and above poverty line (APL).

In the present study, BPL was considered, when the participants family source of income was below 1700 Rs./month (approximately 37$/month) and above that is considered as APL. This criterion goes per with World Bank poverty estimate.

The present study defines the basic needs as the absolute minimum resources (food, water, shelter, sanitation, education, and healthcare) necessary for survival usually in terms of consumption goods and we define human rights violations as abuse to right to life, liberty, freedom, education, health and so forth.

Measurement tools

Clinical global impression improvement scale [17]

This was a standardized assessment tool used to rate the severity of illness, change over time, and efficacy of medication, taking into account the patient's clinical condition and the severity of side effects. The CGI-I is rated on a seven-point scale, with the severity of illness scale using a range of responses from 1 (normal) to 7 (among the most severely ill patients).

Sociodemographic schedule

The sociodemographic details taken were age, gender, educational status, marital status, employment, residence, religion, monthly income, type of family, diagnosis and duration of illness (in months).

Needs assessment questionnaire

This questionnaire comprises two sections. Section A was developed by the researchers, based on the UDHR [18] and a review of the literature, to assess the human right needs in the family domain. This tool has 58 items under five dimensions: physical, emotional, religious, social and ethical needs. This is a four-point (ordinal) scale, rated 0 (never) to 3 (always). There is no right or wrong answers.

items in the physical needs dimension (18 items) focus mainly on article 25 in the UDHR to assess the right to a decent life, including adequate food, clothing, housing and medical care services (e.g., availability of light, electricity, safe drinking water, food common for family members, etc.).

The items in the emotional needs dimension (18 items) were based on article 5 (No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment) and article 12 (no one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honor and reputation) of the UDHR to evaluate emotional needs (e.g., family environment helps to maintain dignity, commenting on physical appearance, privacy in terms of opening mails, monitoring phone calls, etc.).

The items in the religious needs dimension (4 items) assess the religious rights of the participants based on article 18 (everyone has the right to freedom of thought, conscience and religion) of the UDHR (e.g., forcing to practice other religious and witchcraft/black magic activities, etc.).

The items in the social needs dimension (8 items) were based on article 13 (everyone has the right to freedom of movement) and article 20 (everyone has the right to freedom of peaceful assembly and association) of the UDHR to measure social and economic rights (e.g., allowing the participants to go out of the home, keeping them from going to a job/school by their family members, allowing them to handle money, etc.).

The items of the ethical needs dimension (10 items) were based on articles 1, 2, 3, 16, 17 and 26 of the UDHR to assess the right to equality in dignity, right to live in freedom and safety, right to marry, right to own property and right to education.

In section B, the researchers used a modified version of Taking the Human Rights Temperature of your community developed by World Health Organization [19] to assess human rights needs of people with mental illness in the community domain. This scale contains 25 items with a five-point scale, rated 0 (don't know) to 4 (always). The above-mentioned instruments were developed in the English language and administered in the format of a face-to-face interview.

This tool was modified to suit to the Indian context (related to mental illness), without losing the essence of questions. For example, "My community is a place where residents are safe and secure" was modified to "My community is a place where mentally ill patients are safe and secure." Items 12, 17, 18, 21 and 22 were completely changed as suggested by the experts. According to the Indian constitution and international covenants (International Covenant on Economic, Social and Cultural Rights (ICESCR) and International Covenant on Civil and Political Rights), right to vote, right to continuing education and right not to be discriminated against are given more importance, and exploring these issues were more relevant to the present study.

Validity and reliability of the tools

The needs assessment questionnaire was validated by 11 experts from various fields such as nursing, psychiatry, psychiatric social work, psychology, human rights and statistics. The final questionnaire was modified according to the experts' suggestions. The scale's reliability assessment was done by using the test-retest method. The researchers administered the tool on 10 recovered psychiatric patients at the follow-up outpatient department over a 2 weeks period and found that the study was feasible. Any modifications deemed necessary were made. The reliability coefficient for the structured questionnaire was 0.96.

Data were collected by the primary author through face-to-face interview, in a private room at the treatment facilities where the participants were recruited. It took approximately 45 min to complete a structured questionnaire. The researchers educated the family members in groups regarding the rights of persons with mental illness.

Ethical consideration

The study protocol was approved by Ethics Committee of the concerned hospital. Written consent was obtained from the participants, and they were given freedom to quit the study. Participants' confidentiality was respected.


   Results Top


The present study was comprised of recovered women with mental illness of whom 54% of them were belonged to APL group. The mean age of the BPL participants was 34.28 ± 9.97 (mean ± standard deviation [SD]) and APL participants were 35.53 ± 1.01 (mean ± SD). More number of participants from both groups were married (78.3%, 72.2% BPL and APL participants respectively), homemakers (82.6% and 79.6%) and were Hindus (91.3% and 83.3%). Nearly half of the women from BPL group were illiterates comparing to 22.2% of APL participants (χ2 = 9.374, P < 0.05). Interestingly, an equal number of the participants from both groups were come from rural as well from urban areas. Though majority of the participants belonged to nuclear families, a significant association was found (χ2 = 7.463, P < 0.02). The number of women diagnosed as mood disorders (58.7% and 55.6%) was slightly higher than women with schizophrenic disorders (41.3% and 44.5%) [Table 1].
Table 1: Sociodemographic characteristics of the study population

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[Table 2] represents perceptions of the participants with regard to meeting of their human rights needs in the family domain. Concerning basic facilities in the physical dimension, almost all the women from APL group were accessible to safe drinking water than BPL participants (χ2 = 8.994, P < 0.02). Similarly, almost all the APL participants were served in the same utensils (χ2 = 13.648, P < 0.00), had adequate food (χ2 = 11.025, P < 0.02), and allowed to use toilet facilities (χ2 = 13.565, P < 0.00). In the emotional needs dimension, more number of APL participants (53.7%) than women from BPL group (43.5%) were afraid of family members (χ2 = 8.233, P < 0.04) and hurt by bad words used by family members (χ2 = 9.014, P < 0.02). BPL participants were more deprived of their economic rights as 80.4% of them complained that they "never/rarely" allowed to handle the money (χ2 = 7.960, P < 0.04). More number of women from APL group (88.9%) agreed that their hair was cut unwillingly by their family members (χ2 = 13.746, P < 0.00).
Table 2: Participants' responses to needs assessment questionnaire

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In the community domain, a significant association was observed to various items between BPL and APL groups. More number of women from APL group (88.9%) expressed that they were discriminated by the community members because of their mental illness (χ2 = 14.150, P < 0.00) and more than half of them felt that they were not accessible to health services equally at affordable cost (χ2 = 9.854, P < 0.04). More than three-fourths of BPL participants (76.1%) than women from APL group believed that there were wondering homeless mentally ill in the community (χ2 = 11.848, P < 0.01), cured mentally ill were never treated like any other citizen by the community members (χ2 = 16.130, P < 0.00) and never expressed their beliefs and ideas without fear of discrimination in the community (χ2 = 16.744, P < 0.00). On the other hand, nearly three-fourths of the APL group women (77.8%) felt that they exploited by the community members than BPL participants (χ2 = 17.490, P < 0.00).


   Discussion Top


This was a preliminary study from India that examined the role of poverty in meeting the human rights needs among women with mental illness at family and community level. Previous studies examined symptomatic psychiatric patients to assess their views in meeting the basic needs. [20],[21],[22],[23] Hence, the responses from the acutely ill psychiatric patients were questionable. Further, Lawska et al. explored asymptomatic patients' expectations from others, but it was only in the psychological dimension. [24] However, the present study was unique in nature as the participants were recovered from mental illness and they were well aware of their diagnosis and were able to comprehend the questions asked by the researchers related to the study.

According to UDHR, "everyone has the right to a standard of living adequate for the health and well-being of himself and his family." This provision sets out some of the elements of this right: (a) Food; (b) clothing; (c) housing; (d) medical care; and (e) necessary social services (article 25). The findings of the present study proved that women from BPL group were deprived of safe drinking water and adequate food than women participants from APL group. These findings support previous research that found more than half of individuals with severe mental illness were not satisfied with their living situations. They want safe, stable, affordable, and desirable housing that is appropriate for their level of functioning and located near the supports and services that they need. [25] Further, according to International Convention on ICESCR, 2002, a human right to water is indispensable for leading a life in human dignity. It is a prerequisite for the realization of other human rights (article I.1). Further, the right to water was defined as the right of everyone to sufficient, safe, acceptable and physically accessible and affordable water for personal and domestic uses. [26] Yet billions of people throughout the world still do not enjoy these fundamental rights. [27] Government should take an active role in providing safe drinking water especially for the poor people.

According to the survey by the mental health charity Rethink, in England, among 3000 people with mental health problems found that they feel most discriminated against by their family (36%), followed by their employers (35%), neighbors (31%), and friends (25%). [28] Similarly, present study also observed that the participants felt discriminated by their family members. For instance, more of the BPL participants were not served in the same plates (30.4%) and were not allowed to use the toilet facilities (21.7%) than participants from APL.

In the current study, more number of APL participants (53.7%) than women from BPL group (43.5%) were afraid of family members (χ2 = 8.233, P < 0.04) and hurt by bad words used by family members (χ2 = 9.014, P < 0.02). These findings were similar to a recent survey conducted in Andhra Pradesh to observe human rights of people with disabilities (includes mental illness). [29] The above findings indicate that the right to live with dignity has been violated by the family members could be because of their negative attitudes toward the people with mental illness. Stigma is painful and humiliating and worsens the lives of people with mental illness. In other words, stigma can be highlighted by commenting typical disgusting words like "loony," "psycho," or "crazy," though they may seem harmless but can be spiteful [24] provided evidence that people with mental illness wanted to be treated in the same way as the other people are, namely: with respect, good manners, and kindly. They also longed for empathy and a positive attitude toward them. The present study also supports the previous research that highlighted the deficits in emotional support for people with chronic mental illness. [30],[31]

Stigmatization of individuals diagnosed as having serious mental illness has been observed across the world. [32] The stigma associated with mental illness is questionably the greatest obstacle facing the mental health community in India. It hinders mentally ill Indians from obtaining the simplest human rights, prevents them from living with dignity, and forces them live in darkness, unaware about their own illness. Similarly, in the present study 88.9% of APL participants (72.4%) accepted that they were "discriminated and exploited by the community members due to their mental illness" (χ2 = 14.150, P < 0.00). These findings support previous studies. [33],[34],[35],[36] However, BPL participants felt discrimination as they felt that cured mentally ill were never treated like any other citizen (χ2 = 16.130, P < 0.00) and never expressed their beliefs and ideas without fear of discrimination in the community (χ2 = 16.744, P < 0.00). Surprisingly, more than half of the APL participants than Women from BPL group felt that they were not accessible to health services equally at affordable cost (χ2 = 9.854, P < 0.04). They reported that one visit to the hospital costs (600-700 Rs. per visit per person) (they have to lose 1 day daily wage (50-80 Rs./day), travelling cost for too and fro (100-200 Rs.) and cost of the food [30-50 Rs.] for person. Above expenses needs to take into account of the accompanying family members of the patient) and above this cost of medications adds to the severe burden to them. However, the burden of lost employment and days out of the role for family members caring for a relative with mental health problems is well documented. [37],[38],[39] Hence, there is an urgent need to provide free public transportation services to the patient with mental illness and to one family member from their residential place to the hospital or rehabilitation center. There is also need to implement an uniform policy across the country to provide disability pension to the people with mental illness.

In the current study, 76.1% of women from BPL group believed that there were wandering homeless mentally ill in the community (χ2 = 11.848, P < 0.01). According to the Indian Council of Medical Research, there are over 70 million people with some form of mental illness in the country and about a quarter of them are homeless. Homelessness is a crucial issue for women especially for those suffering from mental illness. A study conducted in Delhi with a population of 70 million is found to have nearly 2500 women with mental illness who have no hope to live and are virtually on the street. If it extrapolates for the whole nation, the country will have nearly 150,000 mentally-ill destitute women. [40] A homeless woman with mental illness is extremely vulnerable for sexual abuse and needs urgent support and care from both Government and nongovernment organizations. The misconceptions about mental illness and discrimination of women with mental illness can affect all aspects of their lives, denying their civil, political, economic, social and cultural rights and also impact negatively on their access to care and integration into society.

Limitations

The study was restricted to the women with mental illness who attended outpatient department at psychiatric hospital, and smaller sample size made it difficult to generalize the findings. Therefore, further research should focus on larger sample size and qualitative approach including family members, exploratory studies focusing on socio cultural factors may be helpful for depth understanding of human rights issues among these disadvantaged populations.


   Conclusion Top


In a nutshell, findings of the present study shown that women from BPL group were deprived of physical needs such as safe drinking water, adequate food and toilet facilities. Women from APL group were not satisfied in meeting their emotional needs at family level. While majority APL participants felt that they were discriminated, and mental health services were not accessible at affordable cost, BPL participants expressed that there were wandering homeless mentally ill women in their community. As poverty and mental illness are interrelated, government should take active steps for providing free treatment and free transportation service for people with mental illness to attend hospital or rehabilitation centers. There is an urgent need to implement social welfare programs to provide employment opportunities, disability allowance, housing and other social securities for women with mental illness. Further, mental health professionals play an essential role in educating the family and public regarding human rights of people with mental illness.


   Acknowledgment Top


All the researchers' heart fully thank the participants for their valuable contribution.

 
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Correspondence Address:
Vijayalakshmi Poreddi
Department of Nursing, College of Nursing, National Institute of Mental Health and Neuro Sciences (Institute of National Importance), Bengaluru - 560 029, Karnataka
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0019-5545.158182

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