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“I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress

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Abstract

BACKGROUND

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.

OBJECTIVE

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.

DESIGN

Focus groups, analyzed qualitatively.

PARTICIPANTS

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.

APPROACH

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.

MAIN RESULTS

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.

CONCLUSIONS

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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Acknowledgements

This work was funded with support from Grants # R01MH79387 and K24MH72756 (R. Kravitz, PI) and K24MH072712 (P. Duberstein, PI). The authors thank Tina Slee for research assistance and Dawn Case for manuscript preparation.

Conflict of Interest

Dr. Kravitz has received unrestricted research grants from Pfizer during the past three years. Dr. Epstein gave two lectures on patient-physician relationships for Merck in 2009 in which no commercial products were discussed.

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Authors and Affiliations

  1. Departments of Family Medicine, Psychiatry and Oncology, University of Rochester Medical Center, Rochester, NY, USA

    Ronald M. Epstein MD

  2. Rochester Center to Improve Communication in Health Care, University of Rochester Medical Center, 1381 South Avenue, Rochester, NY, 14610, USA

    Ronald M. Epstein MD, Paul R. Duberstein PhD & Jennifer D. Becker MPH

  3. Laboratory of Personality and Development, Department of Psychiatry, University of Rochester Medical Center, Rochester, NY, USA

    Paul R. Duberstein PhD & Patricia M. Bamonti BS

  4. Division of General Internal Medicine, Department of Medicine, University of California, San Francisco, CA, USA

    Mitchell D. Feldman MD, MPhil

  5. Department of Educational Psychology, The University of Texas at Austin, Austin, TX, USA

    Aaron B. Rochlen PhD

  6. Department of Communication and Public Health Sciences, University of California, Davis, Davis, CA, USA

    Robert A. Bell

  7. Department of Internal Medicine, Division of General Medicine, University of California Davis School of Medicine, Sacramento, CA, USA

    Richard L. Kravitz MD, MSPH & Debora A. Paterniti PhD

  8. Center for Healthcare Policy and Research, University of California Davis School of Medicine, Sacramento, CA, USA

    Richard L. Kravitz MD, MSPH, Camille Cipri BS & Debora A. Paterniti PhD

  9. Department of Sociology, University of California Davis, Davis, CA, USA

    Debora A. Paterniti PhD

Authors
  1. Ronald M. Epstein MD
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  2. Paul R. Duberstein PhD
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  3. Mitchell D. Feldman MD, MPhil
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  5. Robert A. Bell
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  6. Richard L. Kravitz MD, MSPH
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  8. Jennifer D. Becker MPH
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  9. Patricia M. Bamonti BS
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  10. Debora A. Paterniti PhD
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Corresponding author

Correspondence to Ronald M. Epstein MD.

Appendix — Focus Group Guiding Questions

Appendix — Focus Group Guiding Questions

Table 3 Focus Group Guiding Questions
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Epstein, R.M., Duberstein, P.R., Feldman, M.D. et al. “I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress. J GEN INTERN MED 25, 954–961 (2010). https://doi.org/10.1007/s11606-010-1367-0

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  • DOI: https://doi.org/10.1007/s11606-010-1367-0

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