title: Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India.
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. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest that messages such as 'recovery is possible' and 'no-one is to blame' may be more helpful than focusing on bio-medical knowledge alone.
authors.affiliation: Centre for Global Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK. Electronic address: mirja.koschorke@kcl.ac.uk.
authors.forename: Mirja
authors.initials: M
authors.lastname: Koschorke
authors.affiliation: Schizophrenia Research Foundation (SCARF), Chennai, India.
authors.forename: R
authors.initials: R
authors.lastname: Padmavati
authors.affiliation: Samarth, Chennai, India.
authors.forename: Shuba
authors.initials: S
authors.lastname: Kumar
authors.affiliation: Centre for Global Mental Health, London School of Hygiene and Tropical Medicine, London, UK.
authors.forename: Alex
authors.initials: A
authors.lastname: Cohen
authors.affiliation: MRC Tropical Epidemiology Group, London School of Hygiene and Tropical Medicine, London, UK.
authors.forename: Helen A
authors.initials: HA
authors.lastname: Weiss
authors.affiliation: Sangath, Goa, India.
authors.forename: Sudipto
authors.initials: S
authors.lastname: Chatterjee
authors.affiliation: Sangath, Goa, India.
authors.forename: Jesina
authors.initials: J
authors.lastname: Pereira
authors.affiliation: Sangath, Goa, India.
authors.forename: Smita
authors.initials: S
authors.lastname: Naik
authors.affiliation: Schizophrenia Research Foundation (SCARF), Chennai, India.
authors.forename: Sujit
authors.initials: S
authors.lastname: John
authors.affiliation: Parivartan, Satara, India.
authors.forename: Hamid
authors.initials: H
authors.lastname: Dabholkar
authors.affiliation: Sangath, Goa, India.
authors.forename: Madhumitha
authors.initials: M
authors.lastname: Balaji
authors.affiliation: Nirmittee, Satara, India.
authors.forename: Animish
authors.initials: A
authors.lastname: Chavan
authors.affiliation: NIMHANS, Bengaluru, India.
authors.forename: Mathew
authors.initials: M
authors.lastname: Varghese
authors.affiliation: Schizophrenia Research Foundation (SCARF), Chennai, India.
authors.forename: R
authors.initials: R
authors.lastname: Thara
authors.affiliation: Centre for Global Mental Health, London School of Hygiene and Tropical Medicine, London, UK; Sangath, Goa, India.
authors.forename: Vikram
authors.initials: V
authors.lastname: Patel
authors.affiliation: Centre for Global Mental Health, Institute of Psychiatry, Psychology and Neuroscience, King's College, London, UK.
authors.forename: Graham
authors.initials: G
authors.lastname: Thornicroft
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D007194:India; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012559:Schizophrenia; D063508:Social Discrimination / Q000523:psychology*; D057545:Social Stigma; D011795:Surveys and Questionnaires
keywords: Caregiver; Discrimination; Family; India; Knowledge; Mental illness; Schizophrenia; Stigma