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.

Experience of stigma among family members of people with severe mental illness: A qualitative systematic review

“…Several studies (researches from USA, Germany, Italy, Belarus, India, and Czech Republic) discussed structural discrimination due to a perceived inadequacy of medical support, information (regarding illness, treatment, and service), and the lack of legislation applicable to people with mental illness and their family members (Angermeyer et al ; Atine ; Buizza et al ; Koschorke et al, ; Krupchanka et al, ; Krupchanka et al, ; Krupchanka et al ; Muhlbauer ).…”

“…Several participants mentioned that they were devalued, ridiculed, or gossiped because of their ill family members (Angermeyer et al ; Atine ; Buizza et al ; Hyun et al ; Karnieli‐Miller et al ; Nxumalo & McHunu ). A few caregivers felt that they were ‘treated differently’ or ‘not respected’ by friends, neighbours, or work colleagues, and they described having become a topic of conversation among friends and neighbours in an unwanted way (Koschorke et al, ; Shamsaei et al ).

Others look at him [the patient] with shame. They call him “loose”.

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“…Participants indicated that stigma experiences provoked self‐discrimination and sometimes caused them to internalize the negative stereotypes associated with mental illness (Buizza et al ; Gonzalez‐Torres et al ; Muhlbauer ; Wong et al ). A few spoke about feeling bad about themselves or having ‘lost self‐esteem’ (Koschorke et al, ).

Before I had a competitive disposition (I considered myself to be stronger than others). Now I always feel I am lesser than others, being inferior’; ‘I always consider my family to be different from an “ordinary” family.

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“…Coping strategies such as being empathetic and trying to understand the responses of others, venting, praying, and using self‐distraction to relieve emotional distress were also reported (Karnieli‐Miller et al ; Muhlbauer ; Nxumalo & McHunu ; O'Grady ; van der Sanden et al ). Participants also stated that a further strategy was to try and influence the ill relative’s behaviour, including keeping their affected relative away from the public, especially during periods of psychosis (Koschorke et al, ; Nxumalo & McHunu ).

I think that parents have to get help and you can’t do it all on your own. You have to follow the same rules and if you can’t, for God’s sake get some help or you’ll end up getting divorced.

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Correlates of affiliate stigma among family caregivers of people with mental illness: A systematic review and meta‐analysis

“…Table presents the characteristics of the eligible studies. All these studies were published between 1994 and 2017 and conducted in the United States (Bassirnia et al., ; Biegel, Milligan, Putnam, & Song, ; Greenberg, Kim, & Greenley, ), Hong Kong (Chen et al., ; Mak & Cheung, , ), Taiwan (Chang, Yen, Jang, Su, & Lin, ; Chang et al., ; Wu & Chen, ), UK (Kingston, Onwumere, Keen, Ruffell, & Kuipers, ; Whitney, Haigh, Weinman, & Treasure, ), India (Koschorke, Thornicroft, Thara, Balaji, & Patel, ; Singh, Mattoo, & Grover, ), Israel (Hasson‐Ohayon, Levy, Kravetz, Vollanski‐Narkis, & Roe, ), Sri Lanka (Fernando, Deane, & McLeod, ; Fernando, Deane, McLeod, et al., ), Ethiopia (Girma et al., ; Weldeslasie Hailemariam, ), Turkey and Brazil (Ferreira de Araujo Jorge & Chaves, ), Portugal (Gonçalves‐Pereira et al., ), and Japan and Korea (Hanzawa et al., , ). All studies were cross‐sectional, except for one follow‐up study.…”