Family Response to a Diagnosis of Serious Mental Illness in Teens and Young Adults: A Multi-Voiced Narrative Analysis

Narratives are stories, stories persuade, persuasion is necessary to develop social problem consciousness, and social problem consciousness is a necessary element of mobilization toward social change. Thus, narratives are intrinsic to social change, both in the form of policy and legislation, and as evidenced by transformations in culture and consciousness. In this dissertation I analyze narratives about mental illness in families because they reflect what we think of as common, everyday understandings about these experiences. Through these analyses, I hope to learn how individuals and families understand the diagnosis of mental illness through stories they tell about how they cope with and manage this new a frightening experience. I examine these experiences as they operate on three different levels; individual, family, and organizational, employing multiple qualitative research methods including autoethnography, narrative analysis of the online presence of an organization, and thematic analysis of personal interviews. In the first empirical chapter, an autoethnography, is my personal story, written in the first person, giving the reader an account of my experience with my son’s schizophrenia. I bring the reader into the story, sit them down next to my son, and have them experience the tension of the moment when he revealed his hallucinations to me. My objective is that readers feel my fear, they feel the panic I felt, and are taken through the multitude of emotions I experienced in that moment of epiphany, and subsequent hours, days, weeks, and years of confusion, fear, frustration, and grief. In the second empirical chapter I analyzed text mediated narratives found in the website of what may be the single most influential non-governmental organization (NGO) active in the field of mental illness education, the National Alliance on Mental Illness (NAMI). Two overarching narratives emerged in the data I analyzed – opposing understandings of what serious mental illness is, and how it should be treated. One narrative supports a “medicalized” understanding of what these diagnoses mean, and what should be done. Another suggests that, while mental illness is medical problem that can be effectively addressed through professional intervention, “society” exacerbates the condition through the many hurdles it imposes on those who have been so diagnosed. Understanding the stories about mental illness told by such organizations is important because these narratives have the power to shape both public understandings of what mental illness means, and the stories individual people tell about their own experiences. The third and final empirical chapter reports thematic analysis of interviews of parents of individuals with a diagnosis of serious mental illness. Few families are prepared for that moment when they first learn their son, daughter, sibling, or parent is living with a mental illness. In those initial hours, days, weeks, and months, families are suddenly faced with painful, stressful, and fear laden realities that were never anticipated. These families are forced to restructure their entire world around the fact that they are now living with a family member who is no longer accepted in society. Despite variations in family structure and experience, three common themes emerged from these narratives: 1) the immediate, sometimes desperate, search for relief from symptoms and an extended battle over treatment, 2) the desire to accept this new reality, and to support and advocate for their child, and 3) eventually finding and maintaining family equilibrium. After first demonstrating how parents’ stories reflect these themes across the spectrum of respondents, I evaluated how these themes may or may not connect to NAMI’s organizational narrative and dominant cultural understandings about mental illness