A qualitative study on family acceptance,stigma and discrimination of persons with schizophrenia in an Indian metropolis

Abstract

Families’ perception and their acceptance of the person with schizophrenia play a major role in the course and outcome of schizophrenia. Based on in-depth interviews with people with schizophrenia and focused group discussion with their care givers, this article identifies the factors that influence family acceptance which in turn nullify people’s experiences of stigma and discrimination in an urban metropolis of India. Factors that strengthened acceptance and nullified people’s experiences of stigma and discrimination in domains like marriage, decision-making, access to property, treatment and care have been identified. The article highlights implications for social work practice and research.

Keywords

Acceptance discrimination family schizophrenia stigma

Along with the symptoms and disabilities that result from schizophrenia, people with schizophrenia also struggle with the stereotypes and prejudice that result from misconceptions about the disease (Corrigan and Watson, 2002). Literature from the global North has clearly established that people with mental illness experience stigma and discrimination in interpersonal relationships, access to social roles and health care services (Lee et al., 2006; Schulze and Angermeyer, 2003; Thornicroft et al., 2009; Wright et al., 2007) that affect their quality of life, self-esteem and their opportunities for accessing good jobs, safe housing and affiliation with diverse groups (Corrigan and Watson, 2002).

Conceptualization of stigma and discrimination

Conceptually, stigma constitutes three components: stereotype, prejudice and discrimination (Corrigan and Kleinlein, 2005). Mental illness stigma is therefore based on stereotypes that are often negative in nature (e.g. dangerous, incompetent, unpredictable, untrustworthy) (Phelan et al., 2000), which when endorsed by people form prejudices (like fear, anger) that are fundamentally a cognitive and affective response, leading to discrimination (in the form of rejection of job, avoidance, etc.).

Stigma occurs when people distinguish and label human differences and when dominant cultural beliefs link labelled people to undesirable characteristics or negative stereotypes. Stigma is entirely dependent on power, wherein powerful people confer stigma on others, ensuring that human differences that are labelled different are culturally relevant, recognized and acknowledged as ‘different’ (Link and Phelan, 2001: 367).

Labelling leads to placing people in distinct categories that accomplishes some degree of separation between ‘us’ and ‘them’, wherein stigmatized individuals are referred to by their label (e.g. ‘manic-depressive’ or ‘schizophrenic’). Labelled persons experience status loss and discrimination that lead to unequal outcomes (Link and Phelan, 2001: 365).

Stigma and discrimination are thus interrelated, reinforcing and legitimizing each other. Stigma lies at the root of discriminatory actions, leading people to harm or deny services or entitlements to others. Discrimination is thus the enactment of stigma, which in turn reinforces stigma (Aggleton et al., 2005).

Due to rejection and avoidant attitudes (Phelan et al., 2000; Whatley, 1959), people with mental illness often experience discrimination within their family, in their social relations and at their workplace where they are not fully accepted by the larger community (Rosenfield, 1997; Schulze and Angermeyer, 2003). As well, mental illness stigma affects the educational goals of individuals with schizophrenia who lack faculty support and experience stigmatization of their mental illness, leading to a sense of social isolation and constricted social networks (Loewen, 1993; Megivern et al., 2003).

In the Indian context, few studies from southern India have suggested that young women with schizophrenia are more vulnerable to discrimination (Thara and Srinivasan, 2000), as, for example, being deserted by their spouses without receiving any maintenance (Thara et al., 2003). A study of mental hospitals in western India highlighted how family members use these institutions as places to abandon women with mental illnesses (Maitra, 2005).

This article is based on first author’s doctoral study on stigma, discrimination and human rights violations among people with schizophrenia in Mumbai, western India. In spite of existing stigma research, more work needs to be done (Markowitz, 2005). Most work on mental illness stigma has been an outcome of attitude surveys and there have been notably few contributions to literature from service users themselves. Little has been written about the actual experiences of rejection of people with mental illness (Thornicroft, 2006). Studies have failed to capture the larger picture of discrimination (Markowitz, 2005).

Within India too, studies have not been many and is largely understudied (Thara and Srinivasan, 2000), giving a very patchy picture of mental illness stigma and extent of discrimination. Information from the West cannot be applied without considering the socio-cultural differences thereby stressing the need for more in-depth stigma research (Loganathan and Murthy, 2008). The present study therefore attempted to understand experiences of stigma and discrimination faced by people with schizophrenia with salient emphasis on families’ role in strengthening and/or nullifying stigma.

The doctoral study revealed that family support was seen to be crucial component in nullifying stigma experiences for the person living with schizophrenia. While some families played a robust role in supporting people recovering from schizophrenia, by extending family support and acceptance; at the same time prevalent trends indicated that some families discriminated against these individuals and induced stigma. Physical and emotional abuse, including taunts, being labelled as ‘mad’ or ‘lazy’ and rejection by family members, were perceived as stigmatizing and discriminatory by people living with schizophrenia. Disassociation from ill persons, both in terms of emotional disengagement as well as sharing the same physical space, was perceived as rejection. Within marriage, discrimination was experienced as hostility, criticism, lack of care for the person and separation from the spouse on the grounds of mental illness. Discrimination was also experienced in domains of decision-making and property inheritance.

In this article, the authors discuss the factors that influenced a family’s acceptance of the person with schizophrenia which in turn impacted the latter’s experiences of stigma and discrimination. Findings revealed that both stigma and discrimination were experienced as distressing experiences that the participants had difficulty in distinguishing. This study thus uses both of these concepts interchangeably.

Families’ response to people with mental illness

The perception of family members and their interactions play a major role in the course and outcome of schizophrenia (Manickam et al., 1998). However, literature on the nature of family support, stigma and its effect on persons with mental illness are limited, other than those on family stigma and expressed emotion.

High expressed emotion and stigma are mutually reinforcing and share a strong relationship with each other. Reduction in family members’ levels of expressed emotion may also reduce perceived stigma (Phillips et al., 2002). High expressed emotion in families negatively impacts the course and outcome of persons with schizophrenia (Kriesman et al., 1979). Associating with a person who has mental illness has its own dilemma, wherein families can choose to either embrace the ‘fate’ of a stigmatized person or avoid and terminate the relationship (Kriesman and Joy, 1974: 39). The stigma of mental illness increases stress among caregivers that results in an increase in the expressed emotions among family members.

In India, families in general are tolerant of deviant behaviour and are willing to take care of the ill member (Bhatti et al., 1980). Leff et al. (1987) found that in northern India, families of persons with schizophrenia had lower expressed emotion, meaning limited experiences of hostility and neglect. However, many times, people with schizophrenia were subjected to neglect, physical abuse and rejection (Thara et al., 2003), shame and ridicule (Loganathan and Murthy, 2008), all of which amounted to different shades of stigma and discrimination. Rejection of the ill person and wishing that the person lived away from the family amounted to hostility (Ameresha and Venkatsubramanium, 2012). In contrast, people who received caregiving support from the family were less stigmatized and discriminated against (Thara and Srinivasan, 2000). In this article, the authors analysed the familial factors strengthening family support thereby minimizing the chances of stigma and discrimination.

Research methods

Qualitative methods are acknowledged as being more suited to understanding subjective and transformative life changes of persons living with chronic illness. These methods were used in the present study (Conrad, 1990) to provide insights into the subjective realities of the participants (Annels, 1996). In particular, grounded theory was used wherein the lines of inquiry focused on understanding people’s illness-related experiences (Rose et al., 2002).

Using purposive sampling, participants were chosen from day-care centres, psychiatric clinics and schizophrenia support groups (SSG) across Mumbai. Those within the age range of 18 to 60 years and who were diagnosed with schizophrenia and/or schizophrenia-related disorders (F20–F29 of ICD-10, 2002) and free from symptoms for the past year while using medications and/or any other psychotherapeutic interventions were recruited. Those with other co-morbid conditions who had their own stigmatizing experiences that could override those experiences faced by participants due to schizophrenia alone were excluded. Caregivers living with participants having schizophrenia were also recruited in the study. Saturation was reached with a sample size of 34 participants (20 people with schizophrenia and 14 caregivers). For the purposes of this study, the term ‘participant’ is used for persons recovering from schizophrenia. Those taking care of the participants are referred to as ‘caregivers’.

The selection of the participants was done carefully to ensure divergence so that various aspects of the issues being studied could emerge. These variances included gender, marital status, work status, illness duration, nature of treatment adhered to and family composition.

The participants comprised an equal number of men and women between the ages of 27 and 59 years (Table 1). All the men and women, who were never-married, as well as the divorced women, lived with their natal families. At the time of this study, all participants lived in nuclear families, though five were raised in joint families.

Table 1.

Demographic profile of participants with schizophrenia.

Gender		Marital status			Work status		Living with			Education
Male (M)	Female (F)	Never married	Married	Divorced	Work for pay	Non working	Parents	Spouse	Siblings	Grade XII or below	Till Under graduation	Completed Graduation/Prof degree
10	10	6 (M)	2 (M)	1 (M)	7 (M)	2 (M)	6 (M)	5	1 (M)	2 (M)	5 (M)	2 (M)
		4 (F)	3 (F)	4 (F)	6 (F)	5 (F)	7 (F)		1 (F)	6 (F)	2 (F)	3 (F)

In most situations, the primary caregiver participating in the study was the mother. With nine participants (six male and three female), parents or spouses were the caregivers since the onset of the illness; while two female participants were cared for by their respective spouses after marriage. In one case, a brother started caregiving after 15 years of the onset of the illness for one male participant. Table 2 shows the profile of the caregivers.

Table 2.

Demographic profile of caregivers.

Gender		Relationship with participants			Age of caregivers (in years)
Female	Male	Parents	Spouses	Siblings	41–50	51–60	61–70	71 and above
7	7	8	3	1	6	2	3	3
			(1 wife, 2 husbands)

Participants, along with their caregivers were briefed about the study and their role in it. The ethical issues of the study were stressed repeatedly at this point. Written consent from the participants and from their caregivers was sought by the first author. Ethical concerns applicable generally to any research were adopted; for example, voluntary participation and freedom to leave the study at any time, informed consent of both the participants and their caregivers and confidentiality. However, sensitivity to expression of harmful ideations was critical, though this did not arise during the data collection.

In order to encourage the emergence of rich descriptive data, open ended, semi-structured interview guides and focused group discussions (FGDs) were used for the data collection. In-depth interviews were conducted with all 20 participants. On average, each participant was interviewed three to four times depending on the information he/she shared, his/her availability and his/her willingness to spare the time. Apart from participants’ profile and illness-related questions, interviews focused on their interaction patterns with family members, including roles and responsibilities within the family, decision-making patterns, nature of proximity to the family members, participation in family affairs and experiences perceived as stigmatizing and discriminatory in nature.

Five FGDs were conducted with 14 caregivers when they attended either the day-care centres or the psychiatric clinics. Two groups had five caregivers each, while one group had four. The FGDs focused on the caregivers’ role, their immediate response upon the onset of illness, the nature of their interaction with and support provided to the participant, and their concerns regarding the participant.

Noting Belcher’s (1994: 128) ‘prolonged engagement’ and triangulation strategies were adopted to establish trustworthiness for validity and reliability. The data gathered from participants and their caregivers were cross-checked with various sources like counsellors and case records (wherever available), while maintaining confidentiality. The triangulation process ensured consistency and accuracy of the information.

Interviews and FGDs were recorded and cross-checked with field notes taken simultaneously by the first author, after obtaining prior permission. While most participants allowed recording of the interviews, some refused and in such situations field notes were elaborated on immediately after the interview.

The recorded audio tapes were transcribed into narratives soon after the interview. The next set of questions for future interviews with the same participant evolved from the initial narratives. Following the initial few interviews, significant new themes that were not covered earlier in the interview guide emerged. This led to the reframing and fine-tuning of the interview guide; new questions were introduced and some existing questions were reframed (Draucker et al., 2007). Thus, the demand by theoretical sampling methods led to the participants being approached repeatedly to gather full and more complete information (Glaser, 1978).

All interviews and FGDs were conducted either in Hindi (local language) or English. In cases where the interview and/or FGD was done in Hindi, the narratives were first written in Hindi and then translated back to English by a third-party psychologist professionally engaged in mental health care services. The translated English narrative was finally again compared to the initial Hindi narrative for consistency.

As the data were collected, they were coded and categorized using NVivo 8.0 Qualitative Data analysis software. As transcripts were read, linkages were developed between categories, and their further examinations facilitated exploring the links and developing concepts within and across cases (Ayres et al., 2003). A time-order matrix was also employed to explore changes in life experiences across different phases; namely, the onset of illness, interim (after the subsidence of active symptoms) and recovery. Saturation was considered at a time when no new themes and subthemes emerged from the data, at which time the data collection was stopped. Since data from participants and their caregivers were feeding and corresponding to each other, the same were combined to get a more accurate overall picture of the subject within the familial context.

Findings

The findings within both natal and marital families reveal acceptance of the participant as a core factor in ensuring the family’s support, as well as nullifying any chances of experiencing stigma and discrimination. Within this core factor, the authors identified the following sub-factors facilitating the process of acceptance of the participants.

Pre-morbid acceptance of participants by natal and marital families

Analysis suggested participants who were well accepted by their families prior to the onset of schizophrenia continued to be accepted and to receive support from their families (both in natal and marital families) even after illness. On the other hand, the onset of illness negatively affected the acceptance for those who were pre-morbidly spurned by their families. Most of the ‘Never-married’ participants were very much loved and supported by their natal families prior to the onset of their illness. Favourable pre-morbid acceptance was seen to influence the family’s acceptance and support towards the participants in a positive manner in the post-illness phase too.

A few of the married women, well accepted by their spouses and marital family before the disclosure of their illness, continued to have adequate acceptance even after the disclosure. In contrast, three other female participants were rejected by their marital families subsequent to their disclosure, precipitated by their inadequate acceptance in the first place and further discouraging marital families to care for them. Poor acceptance led to discrimination in the form of separation from respective spouses on grounds of mental illness. Lack of acceptance often led to initiation and/or increased violence and abuse within the family.

My father beats me black and blue . . . But more than the physical pain, deep down in the heart, it’s the humiliation that pains more; it hurts. (Never-married female, living with father, 33)

In married couples, findings hinted at discrimination in the form of abuse, neglect and separation from the spouse if there was a lack of acceptance, but violence after the onset of schizophrenia was found to be absent when pre-morbid acceptance of participants was adequate and strong.

Deep sense of responsibility

A deep sense of responsibility among parents towards their ill children ensured support for the participants even during difficult phases of illness. For most of the participants who were never-married or who were divorced, the parents were their primary caregivers. They stood by the participants in times of their distress. Parents always felt a moral responsibility, driving them to take care of their children during the illness period. A significant observation was that most parents, despite the physical and emotional pressures associated with caregiving, did not perceive participants as a burden. Even after their divorce, female participants found solace, shelter and support at their parents’ place.

A sense of caring for and nurturing the ill participants dominated the caregiving response wherein participants developed a closeness with their parents in terms of their ability to confide, depend, feel secure, be loved and cared for during their illness. This is a typical phenomenon within the Indian socio-cultural context: parents continue to provide care to the best of their abilities when their children are in distress because they see their children as a responsibility and experience love and commitment in their roles as parents and caregivers.

I’ve gone through this illness and it has taken a toll on my life. But my parents helped. They’ve been supportive. They’re polite, kind. They have been by my side in my ups and down. (Never-married, unemployed male, living with parents, 36)

This finding corroborates another study in which most respondents were cared for by their natal families and few lived alone (Thara and Srinivasan, 2000) thereby emphasizing the pivotal role played by families in India for people with schizophrenia, even for women after their marriage. Thus planning any intervention strategy has to be cognizant of this fact. The family needs to be positively supported in its efforts as it deals with the manifestation of different phases of schizophrenia in their loved ones.

Personal life stages of siblings at the beginning of the caregiving process

Siblings who were on the verge of starting their own personal and professional lives found it difficult and burdensome to handle caregiving responsibilities. The onset of schizophrenia led to the weakening of participant–sibling relationships. Siblings often perceived association with the participants to jeopardize life events like social interactions, marriage, family and professional life. They preferred avoiding the participants in order to preserve the equilibrium of their own lives. This kind of disassociation led to discrimination and neglect, leaving the participant without care, consideration, love and social interaction.

My brother never accompanied me to the doctor because he feels if he goes with me to the clinic, he would also get that label of being mad. (Never-married, unemployed female, 33)

Studies reveal siblings of people with mental illness fear rejection and experience a sense of helplessness, forcing them to disengage from the latter, either physically or emotionally (Kinsella and Ammons, 1996). Our findings suggested that siblings who were well established in their professional and personal lives were more receptive to taking over caregiving roles. Rejection was absent because they were not afraid that the participant’s illness would disrupt their life’s goals. In contrast, it was found that regardless of a strong pre-morbid participant–sibling relationship, once the illness set in, if siblings were in the nascent phases of their lives, they preferred to disconnect themselves from participants in order to avoid perceived anticipated barriers in the progress of their professional and personal lives. Fear of stigmatization from society was a real threat, leading the siblings to discriminate against the participant. However, when caregiving responsibilities for siblings began at a point when siblings were established in their personal and professional lives, the tendency to disconnect and reject the ill person was minimal.

Process and time of disclosure within the marital family

Disclosure of schizophrenia after marriage

Most participants preferred to conceal their schizophrenia prior to marriage because of anticipated discrimination. After marriage, however, the illness of all the participants came to be known to the respective spouses either following a relapse or voluntary disclosure.

The process of disclosure to the marital family influenced the family’s response towards the participants. When illness was disclosed to the marital family/spouse by an outsider, or as an unexpected event, the immediate response was generally negative. This was because marital families and/or spouses were totally unprepared for such information.

My husband came to know about schizophrenia after ten or twelve days of our marriage. I didn’t tell him before marriage, because I was keeping well at that time. . . But after marriage, I missed my medicine and because of that I started feeling scared. . . All those voices started coming again and my husband had doubt that there is something wrong. He asked me. I had no choice then; I had to tell him that I have schizophrenia. He was very angry and felt cheated. (Divorced, employed female, living with father, 37)

Sudden disclosure, accompanied by faulty information, visible symptoms of the disease and fear caused by not understanding the nature of the symptoms and eruption of the problem, tends to negatively affect acceptance and subsequently encourages discrimination.

Nature of marital bonding

The development of a close marital bond and a deep sense of duty towards the participants and their child prompted some spouses to take care of their partners, diminishing the chances of discrimination and rejection within the marital home. Those participants whose illness started at least two years after marriage and/or after the birth of their child faced minimal discrimination, as opposed to those whose disclosure of illness happened immediately after marriage.

She became pregnant. She is mother to my child, so it is my duty to take care of her. How can I leave her then? (Husband of participant engaged in caregiving for 19 years, 46)

Illness as a critical event in these situations had a positive effect on the marital relationship and strengthened the marital bond. In contrast, for some participants, early disclosure after marriage made their spouses feel cheated, and they refused to provide any support. They failed to develop a bond with their respective spouses within a short span of time, suggesting that the timing of disclosure as well as the life cycle stage in which initial disclosure and/or illness occurred determined the nature of support by spouses.

Support from marital and extended family

When a participant’s spouse received support and understanding from their own family around the issue and in caring for the participant, it encouraged the spouse to play a loving, supportive and understanding caregiving role, thereby shielding the participant from discrimination.

My parents were supportive, in the sense that they were the ones who encouraged me to take care of her, get her treated and support her. . . (Husband of participant, 42)

When he [participant] was diagnosed of paranoid schizophrenia, my father-in-law and mother helped me a lot. Whenever he was suspicious of me and beat me up, my father-in-law used to come to my rescue. (Wife of participant, who had delusions of her infidelity and suspicion of her character as illness symptom, 46)

This kind of support by the larger family often prompted spouses to take care of affected participants, which protected participants against discrimination within the marriage. On the contrary, poor acceptance by larger marital family often aggravated hostility and neglect, leading to denial of care by spouses towards the ill participants.

I was not accepted by my husband and his family. . . because his mother was not ready to accept me. He [husband] said, ‘I knew everything before marriage, but now I’m not ready to take her responsibility’. (Divorced, unemployed female, staying with parents, 42)

This suggests that positive response and support towards the participants was not just dependent on the spouse alone, but on the collective influence of the entire marital family.

Informed support versus ‘shame’

Informed support of family and acceptance

Families who were exposed to scientific knowledge about schizophrenia showed greater understanding and support. Knowing about the illness helps families accept the symptoms with understanding and empathy, lessen feelings of anger and shame, and cope well with illness-related challenges (Barak and Solomon, 2005; Lively et al., 1995). As treatment started and families received scientific knowledge about schizophrenia, its course, outcome and ramifications, families understood the sudden and inexplicable nature of variable changes in participants’ behaviour. They could understand that the change in a participant’s behaviour was not intentional, but a manifestation of their illness symptoms.

In contrast, families who were never part of the treatment process could not accept the participant, resulting in increased chances of discrimination by the family. Data indicated that mental health professionals, especially counsellors, played a significant role in empowering families through scientific knowledge about schizophrenia, attitudes of sympathetic consideration and designing ways to handle the participant. Confirming existing research (Larson and Corrigan, 2008), this finding suggests that mental health professionals, counsellors and support groups play a key role in addressing stigma and discrimination within the family context.

‘Sense of shame’ increased chances of discrimination

Families who experienced shame due to the presence of their ill family member found it difficult to accept the latter, leading to increased chances of stigma and discrimination. A ‘sense of shame’ deterred family members from taking on a supportive caregiving role and often induced violence. Shame is one of the components of family stigma; public attitudes that blaming the family members for incompetence can invoke the onset or relapse of mental illness (Larsen and Corrigan, 2008). If families are so blamed, they may experience further shame which in turn invokes an even stronger negative response towards the ill family member. A ‘sense of shame’ was seen as a powerful factor in strengthening discrimination against the participant.

Decision-making and property inheritance

Role fulfilment and non-discrimination

Adequate role fulfilment was another crucial factor in ensuring acceptance and nullifying stigma and discrimination in different domains like decision-making, access to property and upholding the right to family.

Participants who were able to accomplish their roles either within the family or professionally had lower chances of discrimination as opposed to those who failed to fulfil their roles due to schizophrenia. For example, a 45-year-old female participant, who failed to conceive due to the side effects of medication, experienced discrimination within marriage and was denied treatment during interim relapses. Her husband subsequently divorced her on grounds of mental illness against her wishes. In India, where motherhood forms the core of a woman’s identity (Bhogle, 1999), the participant’s failure to fulfil her reproductive role was not accepted by the marital family and thus prompted discrimination against her.

Successful role accomplishment also ensured meaningful and greater participation in a family’s decision-making, and safeguarded against discrimination. Inadequate role fulfilment curtailed the right of the ill person to participate and contribute to decision-making, including those pertinent to their own lives.

I failed to complete studies and start a good career, so my parents feel that I am a failure. They can’t trust me with decision-making, so they don’t support my decision of marriage. . .’ (Never-married female, living with parents and volunteering in SSG, 36)

Contrary to existing literature (Phillips et al., 2002), this finding revealed both men and women to be equally susceptible to discrimination when failing to fulfil their prescribed gender-specific roles.

Employment status and non-discrimination

Employment enhanced a participant’s acceptance in his/her family, thereby minimizing the chances of stigma and discrimination. Participants who were either unemployed and/or contributed minimally to family income had limited decision-making roles as compared to those who were employed in established jobs.

If he [participant] is an earning member then I can give him the decision-making…. but he is jobless, so how can he make decisions? (Father of never-married, unemployed male, 72)

In contrast, participants who were employed in well-established jobs and earned large salaries contributed to their respective families and played significant roles in their family’s decision-making.

Employment also stood out as a crucial factor in influencing a participant’s access to property. Unemployed participants had limited or absolutely no access to property as compared to those who were employed. This was because families lacked confidence in their ill family member’s ability to manage money.

I cannot leave his property share to him [participant]. He has absolutely no idea of how to manage finances, he has never done it. He has never earned a single penny himself, so how will he know that. . . (Father of never-married, unemployed male, 75)

Family composition

Family composition and its structure influenced a participant’s inclusion in decision-making. An absence of a family head, such as a father, brother or spouse, and/or minimal decision-making role of an eldest family member, enhanced a participant’s role in family decision-making. In contrast, the decision-making role of participants was restricted when a family head was present to make decisions, at times on behalf of the participant.

Dad has grown old, he keeps forgetting, so I only take the major decisions of the family. (Divorced female, living with father, 46)

Parents take the decisions at home. It’s mostly mummy who takes decisions for me, like what to wear, what to cook. Since they are there, I don’t need to make any decision. (Divorced female, living with parents, 49)

Gender as a factor

Gender also affected decision-making and access to property. Married and unemployed women’s decision-making was restricted to the kitchen domain, while their husbands (who were not ill) made major decisions regarding property, finance and children’s education. In contrast, men, in spite of their illness, continued to make decisions related to property, finances, children’s education and career. This is a gendered perspective, especially in the Indian socio-cultural milieu of a dominantly patriarchal society, wherein women who do not make a financial contribution to the family find their decision-making role restricted to kitchen domains.

Decisions about savings, property matters are taken by my husband. Otherwise, household related, like what to cook, that I take care of properly. (Married, unemployed, educated female, 38)

Women are silent and often not even consulted during decision-making because men feel that women are incapable of such tasks (Mumtaz and Aysha, 1982). Moreover, having an illness like schizophrenia makes them all the more vulnerable to this kind of discrimination, while men, despite their illness status, continue to be involved in the decision-making process in many situations.

Women were also denied property rights by their families because of their illness status; men, though, had access to property that was equal to their siblings (who were not ill).

My dad has bought this house for me, but it’s in my paternal aunt’s name, not in my name. Schizophrenics can’t have property. My brother has bipolar disorder, still he owns property. . . All the money has been put in my aunt’s and brother’s name, but nothing is in my name. (Never-married, unemployed female, living with father, 36)

Analysis thus indicates that women with schizophrenia became more vulnerable to discrimination, particularly in domains such as property inheritance.

Discussion

Acceptance of the person with schizophrenia emerged as the core factor in nullifying stigma and discrimination. Furthermore, there was a combination of several factors that strengthened family acceptance, thereby minimizing the chances of stigma and discrimination. Acceptance was correlated to family support from members within both the natal and marital families. This in turn was influenced by pre-morbid family ties, scientific knowledge building, nature and timing of disclosure and/or onset of illness and the nature of marital bonding during illness onset and/or disclosure.

Irrespective of the nature of pre-morbid participant–sibling relationship, the tendency for siblings to disconnect from the ill participants was higher among those who were yet to establish themselves in life. This finding differs slightly from existing literature which suggests that siblings of people with schizophrenia tend to have weaker relationships even prior to the onset of illness (Barak and Solomon, 2005). This could be attributed to the cultural context wherein in India siblings usually share a deep bonding and is expected to take care of each other even in their adulthood.

Adequate role fulfilment and employment strengthened participant’s acceptance in family and nullified experiences of stigma and discrimination within the family. This finding corroborates existing literature (Horwitz et al., 1996) which suggests that family support and caregiving is strengthened when people with mental illness support the family economically.

Gender discrimination was noticed with regards to property-related matters. Women’s access to property rights has always been a contentious issue. In spite of legal provisions for equal access to property rights, women are often denied these terms (Martin, 2010). This calls for further examination of the extent to which schizophrenia alone is responsible for the denial of property rights among women. Gender also seemed to affect decision-making roles within families. Although there is an increasing body of literature (Qualls, 1982) suggesting the rise of egalitarian decision-making, the present study does not support the same. Thus, further research is required to explore the extent to which schizophrenia is responsible for unequal gender equations in relation to decision-making. Furthermore, unemployed women had limited roles in family decision-making and were often subjected to discrimination. These emerging trends are conceptualized in the flow chart in Figure 1.

Figure 1.

Emerging trends.

Conclusion and recommendations for social work research and practice

These findings help to expand our knowledge of the multiple factors that contribute to strengthening family acceptance of a person with schizophrenia, thereby reducing the chances of stigma and discrimination. However, these findings are only specific to people recovering from schizophrenia in urban, home-based care settings within an Indian socio-cultural context. The study fails to capture family response in reducing stigma and discrimination of those who are in institutionalized care. Yet the findings are significant for social work practice.

While there has been a proliferation of organizations working for people with mental illness all over the world, yet the findings suggest the need for concerted efforts for education and advocacy measures to inform anti-stigma measures. The findings echo the ‘voices’ of people with lived experiences of schizophrenia and their families.

We propose use of anti-oppressive practice to facilitate change at individual and societal level, engaging in advocacy for human rights practice to promote social justice and ensure access to resources and opportunities for people with schizophrenia. This could be achieved by strengthening and empowering individuals and their families to establish agenda of egalitarian society. Findings confirm that the family continues to remain an important social support system in India and becomes the caregiver for individuals faced with schizophrenia. Hence, families need to be engaged while designing intervention strategies. Educating families about the illness, its course and outcome and of ways to deal with the ill person would enhance the family’s acceptance of the person. Family education should incorporate knowledge and skill building in handling persons diagnosed with schizophrenia.

Support groups could reduce sense of shame thereby changing the family’s attitude. Social workers would need to work with person with schizophrenia and his/her caregiver empowering them to advocate for their own rights. Based on our findings we emphasize the need for social workers to liaise with corporate sector and professional groups and plan for vocational rehabilitation through the identification of the skill set of an affected person. Educating corporate and professional groups about schizophrenia and its ramifications is important in order to reduce the chances of further discrimination of the person within a workplace.

At a macro level, social workers need to empower and meaningfully engage people with schizophrenia and their caregivers in advocacy and human rights campaigns building a continuum of participation evolving them as ‘change makers’ bringing about a positive difference in stereotypes about schizophrenia. Additionally, they should be involved in the development, delivery and evaluation of professional education aimed at development of social workers and mental health professionals.

The study also provides the base for additional in-depth research on human rights violations of persons living with schizophrenia. Action research informing anti-stigma measures and policy changes needs to be initiated.

Footnotes

Acknowledgements

This article is based on the Doctoral study of the first author at Tata Institute of Social Sciences, Mumbai, India. The authors would like to thank Prof. Lakshmi Lingam, Dr Lata Narayan and Dr Katy Gandevia from Tata Institute of Social Sciences, Mumbai, India for their inputs at different stages of the research. The authors also acknowledge the contribution of Dr. Carolyn Lesorogol from Washington University in St Louis during data analysis.

Declaration of conflict of interest

The authors declare that there is no conflict of interest.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Author biographies

Sayani Paul works as a Research Coordinator at Schizophrenia Society of Ontario, Toronto, Canada. She completed her doctoral research from Tata Institute of Social Sciences, Mumbai, India and was a Fulbright fellow (2009–2010) to Washington University at St Louis, Missouri, USA. She has been an accomplished fellow of the McDonnell International Scholars Academy (2009–2010) and has a wide range of research experience of working on issues related to mental health, HIV & AIDS, women and children in various international settings.

Vimla V Nadkarni is the President of International Association of Schools of Social Work. She is the Founder Dean of School of Social Work at Tata Inst of Social Sciences, Mumbai, India and senior Professor at Centre for Health and Mental Health at TISS, Mumbai. She has contributed to the field of health and mental health in India through teaching, field action and publications since 1971. She was the PhD advisor of the first author when the research was conducted under her guided supervision.

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