Illness Perceptions Among Former System Youth with Mood Disorders

Background: Illness narratives are stories individuals construct, modify, and maintain that assist them in developing a coherent sense of self when diagnosed with an illness. Narratives frame the patient’s perceptions or understanding of their illness, for example, what they perceive caused the illness. This is distinct from the perspective of professionals and from a formal diagnosis (Kleinman, 1988). This study explores the illness narratives of young adults formerly involved with public systems of care who were diagnosed with a mood disorder during childhood.

Method: This study utilized face-to-face semi-structured interviews conducted with 59 young adults between 2008 and 2010. All interviews were transcribed and data was managed utilizing Atlas.ti. The research team utilized a two-step concatenated qualitative analytic strategy. First, we engaged in a thematic analysis. Four analysts independently read and coded a subset of interviews (N=5) using line-by-line coding, constant comparison, and  multiple team meetings to analyze text relevant to illness perceptions. This process led to a set of codes (i.e., awareness of illness, knowledge), grouped codes (i.e., awareness), and themes (i.e., insight) across all interviews. This continued with five more interviews and a codebook was developed. Then, two analysts utilized the codebook to code the remaining interviews. For the second step,  two analysts utilized a narrative approach to examine the overall illness narratives within the ten most densely coded interviews. Peer debriefing meetings were held throughout the analytic process to increase credibility and trustworthiness of the analysis.

Results: The mean age of participants was 20.97 (SD=2.09) and 68% were female. Sixty-eight percent identified as African-American, bi- or multi- racial. Five themes emerged across cases: 1) Identity: how participants refer to their illnesses (e.g., anger, aching from the soul) and how much they internalize the illness; 2) Cause: (e.g., environment, chemical imbalance); 3) Insight: what insight consists of and how it develops over time; 4) Control: how much participants perceive they and/or their treatment can control the illness; and 5) Consequences: how the illness impacts their lives. Within cases, illness narratives emerged, including segments related to: what is the illness, what caused the illness, how they experience it, how they manage it, and what consequences it has on their lives. Narratives varied regarding how much participants perceived their illness as distinct (or not) from the perceived cause of the illness (i.e., trauma). Further, narratives varied on how participants described their strategies to control their illness, i.e., with professional treatment, personal control (i.e., using drugs), or some combination. Choices around how to control one’s illness were often linked to other dimensions of narratives, for example, perceived causes and how much they had internalized the illness.

Conclusion: The development of an integrated positive illness narrative can be critical for young adults as they are increasingly expected to manage their illnesses. Data indicate a developmental process exists with regard to dimensions of illness narratives (i.e., insight). This suggests that interventions that focus on strategies to develop a positive narrative during late adolescence may decrease the rates of treatment dropout among young adults.