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Mental health needs of people living with HIV/AIDS in India: a literature review Shankar Dasa; George Stuart Leibowitzb a Center for Health and Social Sciences, Tata Institute of Social Sciences, School of Health Systems Studies, Mumbai, India b Department of Social Work, University of Vermont, Burlington, VT, USA

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To cite this Article Das, Shankar and Leibowitz, George Stuart(2010) 'Mental health needs of people living with HIV/AIDS in India: a literature review', AIDS Care,, First published on: 07 December 2010 (iFirst) To link to this Article: DOI: 10.1080/09540121.2010.507752 URL: http://dx.doi.org/10.1080/09540121.2010.507752

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Mental health needs of people living with HIV/AIDS in India: a literature review

Shankar Das a* and George Stuart Leibowitz b

aCenter for Health and Social Sciences, Tata Institute of Social Sciences, School of Health Systems Studies, Mumbai, India; bDepartment of Social Work, University of Vermont, Burlington, VT, USA (Received 26 January 2010; final version received 5 July 2010 )

We describe the global conditions associated with the AIDS and its socioeconomic and psychological impacts. A systematic review was performed to investigate the literature on the mental health needs of people living with HIV/AIDS (PLHA) in India. The focus is on the prevalence, nature, and sociocultural factors of the in India. A conceptual framework is offered and the findings of this study are presented across three major domains: (a) prevalence of mental health disorders among the HIV-infected population; (b) mental health needs of PLHA; and (c) gaps in policies and programs addressing these issues. Experiences of HIV stigma and discrimination are also noted in this population. We conclude with implications for future research, interventions, and public policy. Keywords: mental health disorder; people living with HIV/AIDS; developing countries; policy; India

Introduction HIV/AIDS in India: the epidemic profile The HIV/AIDS epidemic remains among the most Since the first case of HIV was detected in 1986, the significant challenges to public healthcare systems infection has rapidly spread across all Indian states. worldwide (Catalan, Collins, Mash, & Freeman, Over a billion population of the country makes the 2005). Globally, there are 33 million ‘‘people living task of curbing the HIV infection more difficult. The with HIV/AIDS (PLHA)’’ (UNAIDS/WHO, 2008), growing epidemic has adversely affected the psycho- with 25 million AIDS-related deaths reported in the social, cultural, and developmental domains, hence last 25 years (UNAIDS/WHO, 2007). The negative making it a major public health concern. Contrary impact of HIV infection includes co-morbidities in to prevalence estimates that there are 2.3 million individuals, such as substance abuse, depression, PLHA in India (NACO, 2007a), UNAIDS (2006) reported that an even higher number (5.7 million) and posttraumatic stress disorder (PTSD; Boarts, were living with the virus. Contrasting data makes it Sledjeski, Bogart, & Delahanty, 2006) and it pro- difficult to ascertain an accurate number of HIV/ foundly impacts families and communities. Social AIDS cases in India. Epidemiological studies, sur- stigma, marginalization, and discrimination of PLHA veys, and surveillance systems are difficult to carry lead to further risk and vulnerability that results in out because certain high-risk groups are reluctant to poorer physical and mental health (Jenkins & Sarkar,

Downloaded By: [INFLIBNET India Order] At: 10:24 10 December 2010 undergo HIV/AIDS testing and disclose their diag- 2007). Co-morbidity among PLHA has been linked to nosis. Research has identified certain demographic treatment outcomes and problems with medication and social factors that contribute to this reluctance compliance underscoring the importance of addres- (e.g., ethnicity, oppression, and societal reactions; sing psychological symptoms (Chander, Himelhoch, Chandra et al., 2003), as well as factors that predict & Moore, 2006; UNAIDS/WHO, 2008). reasons for refusing consent to testing (e.g., poor There has been a paucity of research investigating perception of risk, denial of spousal permission; mental health among PLHA in India. While psychia- Satyanarayana, Chandra, Vaddiparti, Benegal, & tric co-morbidity is known to have a strong associa- Cottler, 2009). tion with HIV/AIDS (Chandra et al., 2003; Treisman Generally, HIV/AIDS infection is concentrated & Angelino, 2007), a research review is necessary to among high-risk groups in urban areas, in younger further understand the prevalence and impact of populations (15 Á24 years) with lower education levels mental disorders among PLHA. The study therefore (NACO, 2007a). However, the epidemic has spread aims to review the relevant literature to identify gaps from urban to rural areas and from high-risk in research pertaining to India, which may aid populations to the general public. Comparable sta- national policy development. tistics maintained by National Sentinel Surveillance

*Corresponding author. Email: [email protected]

ISSN 0954-0121 print/ISSN 1360-0451 online # 2010 Taylor & Francis DOI: 10.1080/09540121.2010.507752 http://www.informaworld.com 2 S. Das and G.S. Leibowitz

System and National Family Health Survey-3 Methods (NFHS-3, 2006) indicated that 2.47 million indivi- A systematic review of relevant published literature duals were infected with HIV/AIDS by 2006. Ap- from 1986 to 2009 was undertaken. Studies were proximately 89% were adults (7.5% of whom were identified through keywords and author searches in ]50 years) and 3.8% were children ( B15 years). Of electronic databases including PubMed, Sage, Springer those infected, 39.3% were female and 61% were men Link, Informaworld, and Science Direct. The key- (NACO, 2007a). HIV prevalence rates tend to be 6 Á8 words included AIDS and mental health, mental times greater among high-risk groups, e.g., those who health disorders among PLHA, mental health needs engage in risky sexual behavior, than the general of PLHA, mental health policies, stigma discrimina- population. Although the mode of transmission has tion, and counseling. References were examined and been predominantly heterosexual contact (84.28%; included when appropriate and not found on initial Figure 1), intravenous drug use has been etiologically search. The international and national studies that connected with the epidemic in northeast India significantly discussed mental health aspects of (Shaukat & Panakadan, 2004). Men who have sex PLHA were incorporated and compared with other with men (MSM) were also found to be at high- studies. With reference to India, data were obtained risk due to drug use and risky sexual behavior (Go from secondary sources, such as National Family et al., 2004). Health Survey, theoretical work, secondary analyses As in the other parts of the world, PLHA in India by experts and reports, articles, organizational suffer from stigma and discrimination in several reports, case studies, and gray materials. contexts: household, workplace, health settings, and communities (UNAIDS, 2001). The UNDP (2006) Conceptual framework reported refusal of medical treatment; work place discrimination; physical attacks; rejection by families, The conceptual framework that guides the present partners, and communities; and in some cases denial study is illustrated in Figure 2. HIV infection is a life- of last rites before death to PLHA. Vulnerable threatening that can render PLHA vulnerable to mental health disorders. The research is conclusive subgroups of PLHA like CSWs, transvestites, and that variables associated with psychosocial circum- homosexuals face further discrimination. stances of PLHA, such as stigma, discrimination, and The HIV/AIDS epidemic has existed for over economic crisis, can cause mental health vulnerabil- two decades in India, yet mental health providers ities. The presence of personal level variables, such as often do not have sufficient knowledge and experi- self-perceived stigma, reactions of society and suicidal ence to diagnose and assess the mental health needs thoughts, exacerbates the onset and progression of of people with HIV infection. In some cases, mental disorders. In addition, personal issues, such as providers only require HIV-specific training (Datye disease-related anxiety, suicidal thoughts, occupa- et al., 2006) and mental health issues are often tional stress, and treatment and care issues, intensify neglected during planning and implementing AIDS this propensity. Knowledge of the prevalence of

Downloaded By: [INFLIBNET India Order] At: 10:24 10 December 2010 interventions. mental disorders may determine the type of interven- tions and services that are needed. These needs in turn help shape global policy for addressing mental health problems and the flow of international funds.

Findings Mental health and HIV: prevalence and outcome Studies have consistently reported a higher prevalence of mental health problems among HIV-infected people compared to the general population or hospi- tal samples (Cournos & Forstein, 2000; Green & Smith, 2004; Hartzell, Janke, & Weintrob, 2008). Two categories have been identified: those with mental illness prior to HIV infection and those Figure 1. Mode of transmission of AIDS cases in India. develop mental illness after HIV infection (Dwight Source: NACO (2002) cited in Shaukat and Panakadan et al., 2000; Goulet et al., 2000; Yovtcheva et al., (2004). 2001). Commonly reported co-morbidities included AIDS Care 3

Global Programs & Policies

Millennium Development Goal 6

Psychosocial WHO Framework on circumstances Mental Health Vulnerability People living Stigma WHO Mental Health Discrimination with Policy and Service Economic HIV/ AIDS Guidance Package, 2005 crisis Confidentiality National Response Reactions of self/family/ National AIDS Control community Program (NACP) Common mental health disorders National Mental Health Program Depressive disorders Adjustment disorder NGOs working on Anxiety HIV/AIDS issues Alcohol and drug Personal issues Vulnerability dependency Pre-existing mental Disease-related disorders anxiety Gaps Psychosis Suicidal thoughts Occupational stress Mental health needs Religious and other beliefs Address stigma/ Finances discrimination Treatment and Confidentiality care issues Psychosocial support (Individual/Family/co mmunity) Mental health services Counseling Psychiatric intervention

Figure 2. Conceptual framework.

advanced levels of clinician-rated depression (Jones, intent or attempts, and alcohol dependence, is highly Beach, Forehand, & Family Health Research Project prevalent among HIV/AIDS-infected individuals in Group, 2003; Lipsitz et al., 1994; Miller, 2006; Pence, India. Researchers suggest that depression leads to

Downloaded By: [INFLIBNET India Order] At: 10:24 10 December 2010 William, Kathryn, Joseph, & Bradley, 2006); general worse outcomes in PLHA (see also Hartzell et al., distress (Mellins, Ehrhardt, Rapkin, & Havens, 2000; 2008). Patients with anxiety, mood, and substance Reece, Basta, & Koers, 2004); elevated level of PTSD abuse disorders are less responsive to antiretroviral (Martinez, Israelski, Walker, & Koopman, 2002; treatment (ART) compared to PLHA without these Pence et al., 2006); substance abuse (Pence et al., mental health conditions (Mellins, Kang, Leu, 2006); and general psychiatric morbidity in contrast Havens, & Chesney, 2003; Pence et al., 2006), and with population norms (Milan et al., 2005; Tostes, cause the progression of disease (Antelman et al., Chalub, & Botega, 2004). 2007; Ickovics et al., 2001; Mellins et al., 2003; Collins, Hollman, Freeman, and Patel (2006) Murphy, Marelich, Hoffman, & Steers, 2004). These carried out a systematic review of studies which disorders (especially major depression) profoundly confirmed the high prevalence of mental disorder in affect adherence to highly active antiretroviral ther- HIV/AIDS care settings and treatment programs in apy (HAART) among HIV patients. Moreover, they developing countries. In Table 1, we draw from this increase vulnerability to HIV infection by provoking work and describe the relevant Indian studies that high-risk behaviors and it interferes with a patient’s identify the most prevalent mental disorders. ability to comply with protocols for the preven- The five studies in Table 1 reveal that tion and treatment of HIV infection (Treisman & co-occurring psychiatric morbidity, including depres- Angelino, 2007). A significant number of researchers sive disorders, anxiety, adjustment disorders, suicidal also suggest social stigma, discrimination, and social 4 S. Das and G.S. Leibowitz

Table 1. HIV/AIDS and psychiatric morbidity in India.

Chandra et al. Ahuja, Parkar, and Jacob, Epen, John, Authors Kermode et al. (2008) (2003) Chandra et al. (1998) Yeolekar, (1998) and John (1991)

Study North-east India: South India, HIV India, HIV clinic India, general India, AIDS referral site Manipur and counseling clinics medical ward and surveillance Nagaland and respite care center centers Sample N74, IUD Widows N68, men and N51, men and N18, men and N46, PWA ( N4) women women women and HIVP ( N42) men and women Study PAG meetings. A Cross-sectional Cross-sectional study. Cross-sectional study. Longitudinal study design range of quantitative study. No No comparison No comparison with two groups. and qualitative data comparison group. Diagnostic / group. Diagnostic / Diagnostic /screening collected to assess the group. Diagnostic screening measures: screening measures: measures: psychiatric impact of the /screening HADS clinical structured clinical clinical interview interventions on the measures: HADS b interview for ICD-10 interview for lives of the women Á diagnosis diagnosis (SCID) GHQ a 12 Findings 70% experiencing a 47% with 40% with depression; 33.3% with major Baseline: 75% of common mental depressive 36% with anxiety by depressive disorders; PWA with any disorder, such as disorders; 25% HADS; 35% with 27.8% with psychiatric morbidity depression or anxiety anxiety disorders moderate anxiety and adjustment disorder; and delirium or depressive disorders 5% with psychotic adjustment disorder; by ICD-10; 14% with disorder; 44.4% with 21% of HIVP with persistent suicidal alcohol dependence any psychiatric intent or attempt morbidity. After knowledge of status: PWA, no change; 47.6% HIVP with any psychiatric morbidity

aGeneral Health Questionnaire 12 bHospital Anxiety and Depression Scale. Source: Adopted from Collins et al. (2006) with updates.

isolation of HIV-infected individual cause greater certain HIV medications have negative mental health psychological and emotional turmoil, which may side effects (Global Initiative on [GIP], ultimately lead to mental health problems (e.g., 2008). Difficulties may arise at each phase of HIV Simbayi et al., 2007; Wingood et al., 2008; Wu infection, such as during the time of testing, receiving Downloaded By: [INFLIBNET India Order] At: 10:24 10 December 2010 et al., 2008) and affect the quality of hospital care a HIV-positive diagnosis, the symptomatic phase, (Mahendra et al., 2006). beginning anti-HIV treatment, and the terminal care phase. Hence, it is crucial for PLHA to have easy access to mental health facilities to promote their Mental health needs and services health and well-being, and to prevent secondary The findings of this review underscore that HIV/ transmission. Table 2 describes the rationale for AIDS and mental health disturbances must be treated providing mental health support services for PLHA, concomitantly. Researchers have observed that due GIP (2006) cogently identifies the ramifications of to the complex nature of medical care, patients with untreated mental morbidity, which is considered both co-morbidity are expected to be hospitalized for a mental health and human rights issue. longer periods and have recurrent readmissions and The HIV/AIDS pandemic is associated with low- greater post-discharge aftercare needs (e.g., Cheng, treatment adherence often as a result of mental health Mijch, Hoy, Wesselingh, & Fairley, 2001). issues as well as damaging personal, familial, and With regard to the impact of HIV/AIDS, the societal consequences (Table 2). These outcomes onset of mental health problems may manifest from include co-occurring disorders, substance abuse, risky the initial HIV diagnosis. Subsequently, adverse sexual behavior, stress on caretakers, economic social circumstances and life stressors may exacerbate breakdown/poverty, and breakdown of social sup- psychological symptoms while living with HIV, and port in communities. Despite the fact that mental AIDS Care 5

Table 2. Rationale for PLHA mental health support.

Why people with HIV/AIDS need mental health support?

Untreated mental illness and addiction risky behavior spread of HIV

Untreated mental illness and addiction lower adherence to ART spread of HIV and poorer prognosis

ART side effects damaging to mental health

AIDS brain impairment and other impacts on mental functioning

Untreated mental illness and addiction poorer quality of life for PLHA

Untreated mental illness and addiction greater stress on carers and families

Lack of social and community support social exclusion more illness, poverty, despair

Source: GIP (2006).

health disorders are directly linked with HIV/AIDS, untreated. There are also many LMI countries which very little attention has been paid to this association lack a sound infrastructure required to support (GIP, 2006). patients and provide treatment for mental illnesses Wang et al. (2007, p. 847) highlighted ‘‘disturb- (Saxena et al., 2007). Additionally, patient advocacy ingly high levels of unmet need for mental health and mental health service provision are limited due to treatment worldwide, even for people with the most a lack of research evidence (Patel et al., 2007). serious disorders’’. There are undoubtedly worse Although the UNGASS Country Reports (2008) outcomes in less developed countries where only a highlight that the national governments of 52% of small proportion of people with serious disorders countries worldwide report that psychosocial sup- receive any form of care. Even in developed countries, port services are available in all districts, the non- approximately 50% of individuals with severe psy- governmental organizations report only 27% of chiatric illness do not receive adequate treatment these countries provide such services. Despite avail- (Wang et al., 2007). Patel et al. (2007) noted that in able treatment for mental disorders, the majority of the low- and middle-income countries (LMI), mental the people with mental health needs in most disorders constitute more than 11% of the disease developing nations do not receive required treat-

Downloaded By: [INFLIBNET India Order] At: 10:24 10 December 2010 burden, however, many countries invest less than 1% ments or services (WHO, 2001). Further, there is a of the health budget to mental health services. state of exigency calling for the integration of Numerous studies have found that mental health mental health components into the care and treat- in developing counties has been seriously neglected, ment of PLHA. but with the advent of the HIV pandemic, research- ers, policy-makers, and planners now consider mental health issues as a global health concern (Desjarlais, Discussion Eisenberg, Good, & Kleinman, 1995; Freeman, Patel, HIV/AIDS in India: assessment Collins, & Bertolote, 2005; Saxena, Thornicroft, In the initial phase of the epidemic, it was reported, Knapp, & Whiteford, 2007). Mental health services ‘‘Unlike developed countries, India lacks the scientific are scarce in the LMI countries and there is a dire laboratories, research facilities, equipment, and med- need to address the gap in service provision (Lancet ical personnel to deal with an AIDS epidemic. In Global Mental Health Group [LGMHG], 2007; addition, factors such as cultural taboos against Saxena et al., 2007). Such services are particularly discussion of sexual practices, poor coordination essential for people, like the PLHA, who are at risk of between local health authorities and their commu- developing severe mental health disorders. Similarly, nities, widespread poverty and malnutrition, and lack mental is largely neglected and many of capacity to test and store blood would severely psychiatric disorders remain undiagnosed and hinder the ability of government to control AIDS if 6 S. Das and G.S. Leibowitz

the disease did become widespread’’ (Ghosh, 1986, psychological support and mental counseling to ART p. 29). This research review suggests that in order to users (NACO, 2007b). promote improved public health outcomes and elicit In India, ‘‘the National Mental Health Program behavioral change among PLHA in India, e.g., reduce (NMHP) serves practically as a mental health policy’’ risky behaviors, access to counseling, adequately (Khandelwal, Jhingan, Ramesh, Gupta, & Srivastava, trained medical professionals, community support, 2004, p. 126). The NMHP (1982) aimed to address and government policies supporting mental health the inadequacies in the mental heath infrastructure in interventions are required. order to tackle the burden of mental illness in the community. The strategies include integrating mental health with the general health systems, provision of Programs and policies tertiary care for treatment of mental health disorders, The international literature recommends addressing eradicating the associated stigma, and protecting the the mental health challenges of PLHA by ascertaining rights of the mentally ill patients (National Institute and meeting their mental health needs (Freeman of Health and Family Welfare [NIHFW], 2009). et al., 2005; GIP, 2006; Saxena et al., 2007; Wang However, the NMHP does not specifically deal with et al., 2007). This review of the literature finds that the mental health needs of PLHA. the data in India are not sufficient to either advocate The available data suggest that the main problem or provide the services necessary to meet the growing facing the country is the severe deficiency of human mental health needs of PLHA. The challenge for the resources. It is estimated that for a population of 1 Government of India (GOI) will be to collect relevant billion, there are only 3500 psychiatrists. This data and develop appropriate programs to address number is unequally distributed between urban and this gap. rural areas with three-fourths concentrated in the Clearly, the majority of persons with mental urban areas. The former Health Minister had health needs in India do not receive needed treat- admitted that there is a shortage of 1600 psychiatric ments or services. Moreover, the mental health social workers (PSWs) and 9000 psychiatric nurses component is often neglected during planning and (cited in Chatterjee, 2009). However, the Eleventh Á implementing AIDS interventions in the country. Five Year Plan (2007 2012) of the country has However, mental health needs of the PLHA could prioritized mental health and approved INR 4740 be addressed effectively through counseling, social million. The funding shall be utilized for establishing support, and psychotherapeutic strategies (Catalan 11 centers of excellence for mental health and et al., 2005). Specifically, treatment adherence, neurosciences. Additionally, it is expected to support depression, substance abuse, and high-risk sexual the addition of ‘‘100 psychiatrists, 400 clinical activity are significant issues that should be tackled psychologists, 400 PSWs, and 800 psychiatric nurses in this population. Since HIV patients must visit to India’s health workforce each year’’ (p. 1161). Yet clinics and hospitals regularly, healthcare providers information is needed to help integrate trained have unique opportunities to assess these issues and human resources into successful provision of services and support. Downloaded By: [INFLIBNET India Order] At: 10:24 10 December 2010 intervene in the context of comprehensive care (Berg, Susan, Michelsona, & Safren, 2007). WHO (2008) also recommends that the mental health component Conclusion must be incorporated within HIV/AIDS programs in the nation, which could bring about a remarkable There are few inadvertent barriers in the implementa- improvement in the health of PLHA. tion of mental health policies in a country. There is a In 1986, the GOI initiated the NACP in 1987 with lack of sensitivity regarding mental health issues in a special emphasis on surveillance, prevention and India, and the country is short on adequate resources control, and testing of blood and blood products. and trained personnel to carry out the provisions of Realizing the magnitude of the epidemic, the GOI such policies. Moreover, the availability of counseling established the NACO in 1992 with the support from and psychiatric services is inadequate. There is high the World Bank to augment and improve existing prevalence of mental disorders amongst PLHA and programs. Subsequently, in order to move toward the importance of mental health intervention must decentralization and effective implementation of the not be undermined. The most important role of program, NACO established State AIDS Control mental health providers is to understand the psycho- Societies. Nevertheless, to date there are no specific social and sociocultural context of HIV, alleviate guidelines/policies of NACO on mental health of mental health problems, and ensure treatment PLHA, there is only a cursory mention of providing adherence as well as prevention. Mental health AIDS Care 7

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