Efforts have been made to transform the mental health system into one focused on recovery, where veterans with severe mental illnesses would be active participants in the process. Our study team has been testing a self-management program, Illness Management and Recovery (IMR), in a randomized trial. The purpose of this companion study was to better understand how patient activation happens with people with schizophrenia using a narrative approach. We hypothesized that as consumers learn more about their illnesses and effective approaches to managing them, in combination with work toward personally meaningful goals, consumers will be more active and involved in their treatment and recovery process.
1. Describe, from veterans' narratives, themes that are most closely related to the patient activation construct.
2. Examine whether standardized ratings of veterans' narratives relate to patient activation.
3. Examine whether and how veterans who receive IMR experience a shift in their views of themselves and their mental illness (from patient to active participant in recovery).
We conducted narrative interviews with 48 veterans who were also participating in the IMR RCT. Semi-structured interviews asked veterans to tell the story of their lives in as much detail as they could. These narratives were followed by specific probes regarding their understanding of their mental illness, how their lives have been affected by it, the amount of control they have, how others have been affected, and what they see in the future. We used several approaches to analyzing the data, including an inductive, consensus-based approach, and two standardized rating systems (done by other coders). In addition, we compared qualitative findings with scores on a standardized measure of patient activation in our RCT.
Several themes appeared closely related to patient activation, including: Beliefs about coping/control, Cause of illness, Impact of illness, Physical health, Things that help me, Things that make my symptoms worse, Treatment experiences, What is my illness/how I see myself. The most activated people in our sample described accepting their illness, and taking active steps to control their symptoms, often through medications and counseling, but also through individual coping strategies (e.g. walking, guitar). In addition to knowing what things made their symptoms better, they also could identify things were likely to make them worse. A few participants described being "blessed" that they had schizophrenia, and found meaning beyond just coping with their illness.
Patient activation is a new concept in schizophrenia. Preliminary findings suggest standardized measures of patient activation relate to meaningful themes in the lives of veterans with schizophrenia.
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