The stigma of mental of illness: Learning from the situated knowledge of psychiatrized youth, caregivers, and young siblings

Adopting a critical social science paradigm, this study consisted of two qualitative research approaches exploring self and family stigma of mental illness in child and youth mental health. The first approach utilized participatory action research (PAR) to work with seven (n=7) psychiatrized youth as collaborators in three research initiatives. The PAR framework was evaluated for countering the stigma of mental illness. The evaluation revealed the youth felt valued and valuable and had a sense of belonging. The PAR structure and research relationships were important anti-stigmatizing factors. The second approach utilized in-depth, semi-structured focus group and interview discussions independently with fifteen (n=15) caregivers and seven (n=7) young siblings exploring their lived experiences of their child's/sibling's mental health issue. The data analysis consisted of a thematic content analysis based on a critical narrative discourse analysis and the principles of grounded theory. Four findings emerged from the caregiver discussions: (1) making sense of the child; (2) making sense of the family; (3) making sense of being a parent; and (4) making sense of the child and youth mental health system. Three findings emerged from the sibling discussions: (1) narratives of negative experiences related to having a brother or sister with a mental health issue; (2) making sense of the person/sibling; and (3) making sense of the family. Emerging from the situated knowledge of psychiatrized youth, caregivers, and siblings were productions of a "mental health" and "mental illness" binary, in which mental health was constructed as "normative" and mental illness was pathologized and constructed as "counter-normative". Other oppositional binaries emerged about "good and bad parents" and "good and bad families". As an outcome of the binaries, stigma emerged when some aspect of a person's being or ways of being were deemed "abnormal". Current models lack sufficient consideration of the ways these binaries operate as the main social and cultural mechanisms that create and perpetuate stigma. The findings suggest the importance of adopting an anti-stigmatizing approach to research, policy, and practice that incorporates both an individualized and institutionalized commitment to ending the stigma of mental illness in child and youth mental health.