“I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress
Rent the article at a discountRent now
* Final gross prices may vary according to local VAT.Get Access
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.
- Kravitz, RL, Epstein, RM, Feldman, MD (2005) Influence of patients' requests for direct-to-consumer advertised antidepressants: a randomized controlled trial. JAMA 293: pp. 1995-2002 CrossRef
- Levinson, W, Gorawara-Bhat, R, Lamb, J (2000) A study of patient clues and physician responses in primary care and surgical settings. JAMA 284: pp. 1021-1027 CrossRef
- Lang, F, Floyd, MR, Beine, KL (2000) Clues to patients' explanations and concerns about their illnesses. A call for active listening. Arch Fam Med 9: pp. 222-227 CrossRef
- Epstein, RM, Hadee, T, Carroll, J, Meldrum, SC, Lardner, J, Shields, CG (2007) "Could this be something serious?" Physicians' responses to patients' expressions of worry and distress. J Gen Intern Med 22: pp. 1731-1739 CrossRef
- Barbui, C, Tansella, M (2006) Identification and management of depression in primary care settings. A meta-review of evidence. Epidemiol Psichiatr Soc 15: pp. 276-283
- Young, AS, Klap, R, Sherbourne, CD, Wells, KB (2001) The quality of care for depressive and anxiety disorders in the United States. Arch Gen Psychiatry 58: pp. 55-61 CrossRef
- Harman, JS, Edlund, MJ, Fortney, JC (2004) Disparities in the adequacy of depression treatment in the United States. Psychiatr Serv 55: pp. 1379-1385 CrossRef
- Dwight-Johnson, M, Sherbourne, CD, Liao, D, Wells, KB (2000) Treatment preferences among depressed primary care patients. J Gen Intern Med 15: pp. 527-534 CrossRef
- Barney, LJ, Griffiths, KM, Christensen, H, Jorm, AF (2009) Exploring the nature of stigmatising beliefs about depression and help-seeking: implications for reducing stigma. BMC Public Health 9: pp. 61 CrossRef
- Goldman, LS, Nielsen, NH, Champion, HC (1999) Awareness, diagnosis, and treatment of depression. J Gen Intern Med 14: pp. 569-580 CrossRef
- Cooper-Patrick, L, Powe, NR, Jenckes, MW, Gonzales, JJ, Levine, DM, Ford, DE (1997) Identification of patient attitudes and preferences regarding treatment of depression. J Gen Intern Med 12: pp. 431-438 CrossRef
- Mohr, DC, Hart, SL, Howard, I (2006) Barriers to psychotherapy among depressed and nondepressed primary care patients. Ann Behav Med 32: pp. 254-258 CrossRef
- Kravitz RL, Paterniti DA, Epstein R, et al. Organizational and relational barriers to depression help-seeking in primary care: Qualitative Study. Ann Fam Med. 2009.
- Karasz, A, Sacajiu, G, Garcia, N (2003) Conceptual models of psychological distress among low-income patients in an inner-city primary care clinic. J Gen Intern Med 18: pp. 475-477 CrossRef
- Karasz, A, Watkins, L (2006) Conceptual models of treatment in depressed Hispanic patients. Ann Fam Med 4: pp. 527-533 CrossRef
- Karasz, A (2005) Cultural differences in conceptual models of depression. Soc Sci Med 60: pp. 1625-1635 CrossRef
- Feldman, MD, Franks, P, Duberstein, PR, Vannoy, S, Epstein, R, Kravitz, RL (2007) Let's not talk about it: suicide inquiry in primary care. Ann Fam Med 5: pp. 412-418 CrossRef
- Rudebeck, CE (1992) General practice and the dialogue of clinical practice: On symptoms, symptom presentations, and bodily empathy. Scand J Prim Health Care Supplement: pp. 1-87
- Epstein, RM, Quill, TE, McWhinney, IR (1999) Somatization reconsidered: Incorporating the patient's experience of illness. Arch Intern Med 159: pp. 215-222 CrossRef
- Raue, PJ, Schulberg, HC, Heo, M, Klimstra, S, Bruce, ML (2009) Patients' depression treatment preferences and initiation, adherence, and outcome: a randomized primary care study. Psychiatr Serv 60: pp. 337-343 CrossRef
- Good, BJ, Good, MD The Meaning of Symptoms: A Cultural Hermeneutic Model for Clinical Practice. In: Eisenberg, L, Kleinman, A eds. (1981) The Relevance of Social Science for Medicine. D. Reidel Publishing Co., Dordrecht, Holland, pp. 165-196
- Stoeckle, JD, Barsky, AJ Attributions: Uses of Social Science Knowledge in the 'Doctoring' of Primary Care. In: Eisenberg, L, Kleinman, A eds. (1981) The Relevance of Social Science for Medicine. D. Reidel Publishing Co., Dordrecht, Holland, pp. 223-240
- Baumann, LJ, Cameron, LD, Zimmerman, RS, Leventhal, H (1989) Illness representations and matching labels with symptoms. Health Psychol 8: pp. 449-469 CrossRef
- Leventhal, H, Diefenbach, MA, Leventhal, EA (1992) Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cogn Ther Res 16: pp. 143-163 CrossRef
- Safer, MA, Tharps, QJ, Jackson, TC, Leventhal, H (1979) Determinants of three stages of delay in seeking care at a medical clinic. Med Care 17: pp. 11-29 CrossRef
- Karasz, A (2008) The development of valid subtypes for depression in primary care settings: a preliminary study using an explanatory model approach. J of Nerv Ment Dis 196: pp. 289-296 CrossRef
- Bandura, A (1977) Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev 84: pp. 191-215 CrossRef
- Prochaska, JO, DiClemente, CC (1983) Stages and processes of self-change of smoking: toward an integrative model of change. J Consult Clin Psychol 51: pp. 390-395 CrossRef
- Prochaska, JO, DiClemente, CC (1982) Transtheoretical therapy: Toward a more integrative model of change. Psychotherapy Theory, Research and Practice 19: pp. 276-288 CrossRef
- Glanz, K, Lewis, FM, Rimer, BK Linking theory, research, and practice. In: Glanz, K, Lewis, FM, Rimer, BK eds. (1997) Health Behavior and Health Education: Theory, Research, and Practice. Jossey-Bass, San Francisco, pp. 19-35
- Pescosolido, BA (1992) Beyond rational choice: The social dynamics of how people seek help. Am J Sociol 97: pp. 1096 CrossRef
- Andersen, RM (1995) Revisiting the behavioral model and access to medical care: does it matter?. J Health Soc Behav 36: pp. 1-10 CrossRef
- Rochlen AB, Paterniti DA, Epstein RM, Duberstein P, Willeford L, Kravitz RL. Barriers in Diagnosing and Treating Men With Depression: A Focus Group Report. Am J Mens Health. 2009.
- Bell, RA, Paterniti, DA, Azari, R (2010) Encouraging patients with depressive symptoms to seek care: A mixed methods approach to message development. Patient Educ Couns 78: pp. 198-205 CrossRef
- Diagnostic and Statistical Manual of Mental Disorders: DSM-IV. American Psychiatric Association, Washington, D.C.
- Andersen, R, Anderson, OW, Smedby, B (1968) Perception of and response to symptoms of illness in Sweden and the United States. Med Care 6: pp. 18-30 CrossRef
- Wittink, MN, Dahlberg, B, Biruk, C, Barg, FK (2008) How older adults combine medical and experiential notions of depression. Qual Health Res 18: pp. 1174-1183 CrossRef
- Lowe, B, Kroenke, K, Herzog, W, Grafe, K (2004) Measuring depression outcome with a brief self-report instrument: sensitivity to change of the Patient Health Questionnaire (PHQ-9). J Affect Disorders 81: pp. 61-66 CrossRef
- “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
- Cover Date
- Print ISSN
- Online ISSN
- Additional Links
- Industry Sectors
- Author Affiliations
- 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