Responses to stigma-related stressors: a qualitative inquiry into the lives of people living with schizophrenia in India

ABSTRACT

A person’s capacity to counteract mental illness stigma is significant in combating stigma. However, little is known about how people cope against mental illness stigma and factors that guide the same. In the present study, the author attempts to investigate coping responses of people living with schizophrenia (PLS) to stigma-related stressors in an urban metropolis in Western India. Employing qualitative methods, in-depth interviews were conducted to collect data from 20 PLS, attending psychiatric clinics, peer support groups and mental health agencies across the city of Mumbai, India. Thematic analysis suggested five main domains of stigma-related stressors: (1) ‘illness’ labeling; (2) labeling, violence and abuse; (3) rejection; (4) job loss; and (5) anticipatory discrimination. Participants responded to stigma stressors by being either helpless or resistant, but there were complex, multi-level factors, such as gender, employment, familial roles and responsibilities, support system, living arrangements, spiritual affiliation and past experiences of discrimination, influencing those responses. Findings explored unique social, economic and cultural elements that intersect with individuals’ societal relations in the post-illness phase and affect overall wellbeing. The study concludes by suggesting implications for research and practice for PLS.

KEYWORDS:

• Stigma
• discrimination
• coping
• violence
• support

Acknowledgements

The author would like to thank Prof. Vimla V Nadkarni from Tata Institute of Social Sciences, Mumbai, India, under whose guidance this research was conducted. She would also extend her heartfelt gratitude to the Doctoral Advisory Committee members and Dr Carolyn Lesorogol for their input at different stages of the research.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes on contributor

Sayani Paul was born in India. She received her PhD degree in Social Work from Tata Institute of Social Sciences, Mumbai, India and was also a Fulbright fellow at the George Warren Brown School of Social Work, Washington University, St. Louis, USA. She has a wide range of experience of researching on issues related to mental illness stigma, mental health wellbeing, women and children in various settings. She migrated to Toronto, Canada and since then has continued to work as a researcher on issues related to mental health of marginalized groups.

Notes

¹Most of the studies referred to in this section include people living with serious mental disorders, including PLS. Studies that included PLS alone have been specified accordingly.

²Due to the sensitive nature of the questions, three participants refused to participate after their first interview; the data gathered from their first interviews were therefore not used in the study.

³The pilot interviews were not included in final analysis because the information was not complete and it was not possible to conduct further interviews with some of the participants to gather more data. Therefore, it was unanimously decided by the research team to remove the pilot interview data from the final analysis.

⁴The author is proficient in reading, writing and speaking Hindi, so she could check for accuracy.

⁵For centuries, people with mental illness were managed by the Indian community in several ways, ranging from physical restraint using chains to treatment by ancient systems of medicine such as Ayurveda. Asylums or mental hospitals came only with the British rule. Provisioning treatment to people with mental illness often led to neglect, abuse and human rights violations. While many such hospitals in India have undergone changes for the better, some of them still retain the old character and are largely custodial in their function. India experienced a shift from institutionalized care to community-based care following the inception of the National Mental Health Programme in 1982, which strengthened role of the family caregivers. The programme envisaged de-institutionalization and integration of mental health care with primary care. Since then, general hospital psychiatry units have started to treat people with mental illness. Non-governmental organizations have also played a role in the growth of community care by dealing with numerous mental health problems in the community through advocacy, mental health promotion and prevention of mental disorders, rehabilitation and direct service provision. Care is also delivered by trained psychiatrists in private settings (Thara & Padmavati, 2013).

⁶For the purposes of this study, ‘violence’ includes incidents of physical beating, shoving, pushing and kicking, whereas ‘emotional abuse’ is characterized by taunts, hate words, swearing and use of foul language.