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Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India

Mirja Koschorke, R. Padmavati, Shuba Kumar, Alex Cohen, Helen A. Weiss, Sudipto Chatterjee, Jesina Pereira, Smita Naik, Sujit John, Hamid Dabholkar, Madhumitha Balaji, Animish Chavan, Mathew Varghese, R. Thara, Vikram Patel and Graham Thornicroft

Social Science & Medicine, 2017, vol. 178, issue C, 66-77

Abstract: Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS–caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that ‘high caregiver stigma’ was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes (‘others finding out’, ‘negative reactions’ and ‘negative feelings and views about the self’) and other themes in the data.

Keywords: Stigma; Discrimination; Knowledge; Schizophrenia; Mental illness; Caregiver; Family; India (search for similar items in EconPapers)
Date: 2017
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Citations: View citations in EconPapers (8)

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DOI: 10.1016/j.socscimed.2017.01.061

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