Understanding Stigma from the Perspectives of Persons with Mental Illness and Their Family Caregivers: A Mixed-Methods Study in China

Background & purpose: Mental illness (MI) stigma as a major impediment to community inclusion has gained increasing awareness in industrialized English-speaking countries, giving rise to the surge of de-stigmatization campaigns that aim to promote the social acceptance of persons with MI. Despite the documentation of higher levels of MI stigma in East Asian societies in cross-cultural studies, research evidence on its cultural manifestation is limited. Moreover, the majority of persons with MI in East Asian societies live with their families, signaling the importance of exploring stigma from the perspectives of persons living with MI and their family caregivers. This paper examines MI stigma in the context of community inclusion in a suburban community in Eastern China.

Methods: Twenty family dyads (20 persons with MI and 20 family caregivers) were interviewed with standardized scales on stigma and community inclusion. Six to 16 days after the structured interview, a subsample of nine dyads participated in a second, semi-structured qualitative interview. Participants were recruited from a local office of a national organization promoting the rights and inclusion of persons with disabilities. The Internalized Stigma of Mental Illness Scale (ISMI) measured subjective experience of stigma and its psychological effects on participants with MI. The Affiliate Stigma Scale (ASS) measured the psychological response towards discrimination and rejection because of having a family member with MI. Semi-structured interviews elicited participants’ perspectives on how community reaction affected their experience of community life. Participants with MI and caregivers were interviewed separately. Semi-structured interviews were transcribed verbatim and coded using NVivo, guided by conventional qualitative content analysis. Quantitative and qualitative findings were integrated to examine whether scale items were “matched” by narratives generated from the transcripts and to identify “unmatched” narratives that cluster into unique domains not reflected in the standardized scales.

Findings: Narratives in semi-structured interviews matched scale items comprising three of the four domains in ISMI, including alienation, discrimination experience, and social withdrawal, but not stereotype endorsement. Despite a high endorsement of scale items reflecting affective responses to discrimination and rejection in ASS, there were only a few narratives that expressed negative emotions by caregivers in semi-structured interviews. Cultural norms governing the way in which emotions and distress are expressed may account for this lack of concordance. Unique domains identified in qualitative interviews but not reflected in the standardized scales included “overt discrimination in workplace” and “burden of secrecy and disclosure” for participants with MI, and “withholding discriminatory attitudes” and “futility of secrecy” for caregivers.

Conclusion and implications: This study illustrates how quantitative and qualitative data can be synthesized to achieve a nuanced understanding of MI stigma in a Chinese community. The identification of unique domains not reflected in the standardized scales underscores the strengths of mixed methods to unravel stigma as a complex phenomenon specific to different sociocultural environments, norms and attitudes. Cultural adaptation is therefore an important consideration that social workers should take when designing interventions to reduce stigma and to enhance social inclusion of individuals and families affected by MI.