The Double Stigma of Limited Literacy and Mental Illness: Examining Barriers to Recovery and Participation among Public Mental Health Service Users

Abstract

The disadvantaged social position of public mental health service users reflects synergistic relationships among tangible disadvantage and stigma and its consequences. Limited literacy, an important factor in social disadvantage and an additional source of stigma, is virtually absent from the discussion. Employing a mixed-methods, service user–informed design, we explore the meaning and impact of limited literacy in the lives of public mental health service users in the United States. Of 267 participants, 184 (69 percent) read at or below an eighth-grade level. Next, we demonstrate levels of and explore relationships among both literacy and mental illness concealment stigma and stigma consciousness (for mental illness). Finally, informed by our qualitative data, we describe how people encounter and manage this double burden of stigma with respect to: contexts of concealment, dilemmas of disclosure, and reduction and exclusion. Limited literacy and its associated stigma are important and underexamined barriers to mental health, well-being, recovery, and social inclusion for public mental health service users. Future work should include further examination of the multiple and layered stigmas in the lives of people with serious mental illness.

Adaptation of Nussbaum's Capabilities Framework to Community Mental Health: A Consumer‐Based Capabilities Measure

“…This person was available to assist with item comprehension, and 62% of respondents requested such assistance. Considering the population in the study (51% of the study sample had up to Grade 8 in terms of education), and the general concern of literacy in a mental health context (Lincoln et al., ), assistance was important to ensure quality and fidelity of data collection. Completion of the full protocol (ACQ‐CMH and three additional measures to assess validity) lasted around 1 hour; however, some participants were not able to fulfill the battery of the measures.…”

Social reproduction and mental health : investigating the role of schooling on wellbeing over the life course

“…This was especially apparent in the practice of being passed to the next grade before students had met the academic requirements, simultaneously signaling school personnel's lack of confidence in participants, and directly inhibiting them from gaining necessary academic skills. This echoes findings from our larger study of literacy among public mental health service users (Lincoln et al, 2017). Even among participants who had graduated from high school, we identified a high prevalence of limited literacy, suggesting that marginalization within school also may also contribute to their disadvantaged social position as adults.…”

“…Even among participants who had graduated from high school, we identified a high prevalence of limited literacy, suggesting that marginalization within school also may also contribute to their disadvantaged social position as adults. While literacy is critical for academic achievement in school contexts, limited literacy inhibits full participation in the major institutions of social and civic life in adulthood (Lincoln et al, 2017). For example, limited literacy is a barrier to following transportation timetables, reading the news, voting, and filling out job applications.…”

Meaning and Management of Multiple Medications Among Public Mental Health Service Users

“…Those who try to conceal their use of medication to avoid stigmatization may be at higher risk of social isolation and may be less likely to seek help (Lincoln et al, 2017;Link & Phelan, 2006). In a latent profile analysis of 8,875 Swiss adults, a negative attitude towards help-seeking (including medication use) was associated with higher levels of shame (Rüsch et al, 2014).…”

“…And if I don't understand it I just wait till the line clear down and ask one of the pharmacists to explain it to me, you know read it to me… to you know, write it on the bottle for me in a way I can understand it. (#136) Research suggests that many public service users have very low levels of literacy (Lincoln et al, 2017), and thus may be placed in the difficult position of being prescribed multiple pharmaceuticals without having the skill set to comprehend their written instructions.…”