“I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress
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Diagnostic and treatment delay in depression are due to physician and patient factors. Patients vary in awareness of their depressive symptoms and ability to bring depression-related concerns to medical attention.
To inform interventions to improve recognition and management of depression in primary care by understanding patients’ inner experiences prior to and during the process of seeking treatment.
Focus groups, analyzed qualitatively.
One hundred and sixteen adults (79% response) with personal or vicarious history of depression in Rochester NY, Austin TX and Sacramento CA. Neighborhood recruitment strategies achieved sociodemographic diversity.
Open-ended questions developed by a multidisciplinary team and refined in three pilot focus groups explored participants’ “lived experiences” of depression, depression-related beliefs, influences of significant others, and facilitators and barriers to care-seeking. Then, 12 focus groups stratified by gender and income were conducted, audio-recorded, and analyzed qualitatively using coding/editing methods.
Participants described three stages leading to engaging in care for depression — “knowing” (recognizing that something was wrong), “naming” (finding words to describe their distress) and “explaining” (seeking meaningful attributions). “Knowing” is influenced by patient personality and social attitudes. “Naming” is affected by incongruity between the personal experience of depression and its narrow clinical conceptualizations, colloquial use of the word depression, and stigma. “Explaining” is influenced by the media, socialization processes and social relations. Physical/medical explanations can appear to facilitate care-seeking, but may also have detrimental consequences. Other explanations (characterological, situational) are common, and can serve to either enhance or reduce blame of oneself or others.
To improve recognition of depression, primary care physicians should be alert to patients’ ill-defined distress and heterogeneous symptoms, help patients name their distress, and promote explanations that comport with patients’ lived experience, reduce blame and stigma, and facilitate care-seeking.
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- “I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress
Journal of General Internal Medicine
Volume 25, Issue 9 , pp 954-961
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- 1. Departments of Family Medicine, Psychiatry and Oncology, University of Rochester Medical Center, Rochester, NY, USA
- 2. Rochester Center to Improve Communication in Health Care, University of Rochester Medical Center, 1381 South Avenue, Rochester, NY, 14610, USA
- 3. Laboratory of Personality and Development, Department of Psychiatry, University of Rochester Medical Center, Rochester, NY, USA
- 4. Division of General Internal Medicine, Department of Medicine, University of California, San Francisco, CA, USA
- 5. Department of Educational Psychology, The University of Texas at Austin, Austin, TX, USA
- 6. Department of Communication and Public Health Sciences, University of California, Davis, Davis, CA, USA
- 7. Department of Internal Medicine, Division of General Medicine, University of California Davis School of Medicine, Sacramento, CA, USA
- 8. Center for Healthcare Policy and Research, University of California Davis School of Medicine, Sacramento, CA, USA
- 9. Department of Sociology, University of California Davis, Davis, CA, USA