“My bitterness is deeper than the ocean”: understanding internalized stigma from the perspectives of persons with schizophrenia and their family caregivers

Abstract

BackgroundIt is estimated that 8 million of the Chinese adult population had a diagnosis of schizophrenia. Stigma associated with mental illness, which is pervasive in the Chinese cultural context, impacts both persons with schizophrenia and their family caregivers. However, a review of the literature found a dearth of research that explored internalized stigma from the perspectives of both patients and their caregivers.MethodsWe integrated data from standardized scales and narratives from semi-structured interviews obtained from eight family-dyads. Interview narratives about stigma were analyzed using directed content analysis and compared with responses from Chinese versions of the Internalized Stigma of Mental Illness Scale and Affiliated Stigma Scale. Scores from the two scales and number of text fragments were compared to identify consistency of responses using the two methods. Profiles from three family-dyads were analyzed to highlight the interactive aspect of stigma in a dyadic relationship.ResultsOur analyses suggested that persons with schizophrenia and their caregivers both internalized negative valuation from their social networks and reduced engagement in the community. Participants with schizophrenia expressed a sense of shame and inferiority, spoke about being a burden to their family, and expressed self-disappointment as a result of having a psychiatric diagnosis. Caregivers expressed high level of emotional distress because of mental illness in the family. Family dyads varied in the extent that internalized stigma were experienced by patients and caregivers.ConclusionsFamily plays a central role in caring for persons with mental illness in China. Given the increasingly community-based nature of mental health services delivery, understanding internalized stigma as a family unit is important to guide the development of cultural-informed treatments. This pilot study provides a method that can be used to collect data that take into consideration the cultural nuances of Chinese societies.Electronic supplementary materialThe online version of this article (10.1186/s13033-018-0192-4) contains supplementary material, which is available to authorized users.

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

“…My thought is that wherever we live, we wanted to keep good relationships with our neighbors. (Wong et al )Being too open isn’t good either, but I do think functional openness is important. (van der Sanden et al 2014)Because I’ve been incredibly selective, as to who I choose and discuss this with…I got a lot of empathy… people that care about me, they are concerned about me…this is because I’ve been very, very, very careful about who I discuss this with.…”

“…The internalization of stigma was identified among family members in some studies. 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).

…”

“…My thought is that wherever we live, we wanted to keep good relationships with our neighbors. (Wong et al )…”

“…In most of the studies included in this review, family members reported that they felt more or less ashamed of being related to a mental ill person because of the person's bizarre behaviours in public and being gossiped about and devalued in social interactions (Angermeyer et al 2003;Gonzalez-Torres et al 2007;Hyun et al 2017;Koschorke et al, 2017;Krupchanka et al, 2016;Shamsaei et al 2013;Wong et al 2018;Yulian & Yueting 2012). Under these circumstances, participants expressed their stress, fear of disclosure, and worry about the stigmatizing reactions and the associated negative consequences (Hyun et al 2017;Koschorke et al, 2017;Krupchanka et al, 2018;Krupchanka et al, 2016;Muhlbauer 2002;van der Sanden et al 2014).…”

“…. (Krupchanka et al, 2018) Additionally, in many studies, family members expressed a high level of emotional burden because of their relative's mental illness and the associated discrimination (Angermeyer et al 2003;Atine 2005;Koschorke et al, 2017;Krupchanka et al, 2018;Muhlbauer 2002;van der Sanden et al 2014;Wong et al 2018). It was hurtful for family members to find others gossiping and avoiding their family (Karnieli-Miller et al 2013;Shamsaei et al 2013).…”