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Published in: Journal of General Internal Medicine 9/2010

01-09-2010 | Original Research

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

Authors: Ronald M. Epstein, MD, Paul R. Duberstein, PhD, Mitchell D. Feldman, MD, MPhil, Aaron B. Rochlen, PhD, Robert A. Bell, Richard L. Kravitz, MD, MSPH, Camille Cipri, BS, Jennifer D. Becker, MPH, Patricia M. Bamonti, BS, Debora A. Paterniti, PhD

Published in: Journal of General Internal Medicine | Issue 9/2010

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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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Literature
1.
go back to reference Kravitz RL, Epstein RM, Feldman MD, et al. Influence of patients' requests for direct-to-consumer advertised antidepressants: a randomized controlled trial. JAMA. 2005;293:1995–2002.CrossRefPubMed Kravitz RL, Epstein RM, Feldman MD, et al. Influence of patients' requests for direct-to-consumer advertised antidepressants: a randomized controlled trial. JAMA. 2005;293:1995–2002.CrossRefPubMed
2.
go back to reference Levinson W, Gorawara-Bhat R, Lamb J. A study of patient clues and physician responses in primary care and surgical settings. JAMA. 2000;284:1021–7.CrossRefPubMed Levinson W, Gorawara-Bhat R, Lamb J. A study of patient clues and physician responses in primary care and surgical settings. JAMA. 2000;284:1021–7.CrossRefPubMed
3.
go back to reference Lang F, Floyd MR, Beine KL. Clues to patients' explanations and concerns about their illnesses. A call for active listening. Arch Fam Med. 2000;9:222–7.CrossRefPubMed Lang F, Floyd MR, Beine KL. Clues to patients' explanations and concerns about their illnesses. A call for active listening. Arch Fam Med. 2000;9:222–7.CrossRefPubMed
4.
go back to reference Epstein RM, Hadee T, Carroll J, Meldrum SC, Lardner J, Shields CG. "Could this be something serious?" Physicians' responses to patients' expressions of worry and distress. J Gen Intern Med. 2007;22:1731–9.CrossRefPubMed Epstein RM, Hadee T, Carroll J, Meldrum SC, Lardner J, Shields CG. "Could this be something serious?" Physicians' responses to patients' expressions of worry and distress. J Gen Intern Med. 2007;22:1731–9.CrossRefPubMed
5.
go back to reference Barbui C, Tansella M. Identification and management of depression in primary care settings. A meta-review of evidence. Epidemiol Psichiatr Soc. 2006;15:276–83.PubMed Barbui C, Tansella M. Identification and management of depression in primary care settings. A meta-review of evidence. Epidemiol Psichiatr Soc. 2006;15:276–83.PubMed
6.
go back to reference Young AS, Klap R, Sherbourne CD, Wells KB. The quality of care for depressive and anxiety disorders in the United States. Arch Gen Psychiatry. 2001;58:55–61.CrossRefPubMed Young AS, Klap R, Sherbourne CD, Wells KB. The quality of care for depressive and anxiety disorders in the United States. Arch Gen Psychiatry. 2001;58:55–61.CrossRefPubMed
7.
go back to reference Harman JS, Edlund MJ, Fortney JC. Disparities in the adequacy of depression treatment in the United States. Psychiatr Serv. 2004;55:1379–85.CrossRefPubMed Harman JS, Edlund MJ, Fortney JC. Disparities in the adequacy of depression treatment in the United States. Psychiatr Serv. 2004;55:1379–85.CrossRefPubMed
8.
go back to reference Dwight-Johnson M, Sherbourne CD, Liao D, Wells KB. Treatment preferences among depressed primary care patients. J Gen Intern Med. 2000;15:527–34.CrossRefPubMed Dwight-Johnson M, Sherbourne CD, Liao D, Wells KB. Treatment preferences among depressed primary care patients. J Gen Intern Med. 2000;15:527–34.CrossRefPubMed
9.
go back to reference Barney LJ, Griffiths KM, Christensen H, Jorm AF. Exploring the nature of stigmatising beliefs about depression and help-seeking: implications for reducing stigma. BMC Public Health. 2009;9:61.CrossRefPubMed Barney LJ, Griffiths KM, Christensen H, Jorm AF. Exploring the nature of stigmatising beliefs about depression and help-seeking: implications for reducing stigma. BMC Public Health. 2009;9:61.CrossRefPubMed
10.
go back to reference Goldman LS, Nielsen NH, Champion HC. Awareness, diagnosis, and treatment of depression. J Gen Intern Med. 1999;14:569–80.CrossRefPubMed Goldman LS, Nielsen NH, Champion HC. Awareness, diagnosis, and treatment of depression. J Gen Intern Med. 1999;14:569–80.CrossRefPubMed
11.
go back to reference Cooper-Patrick L, Powe NR, Jenckes MW, Gonzales JJ, Levine DM, Ford DE. Identification of patient attitudes and preferences regarding treatment of depression. J Gen Intern Med. 1997;12:431–8.CrossRefPubMed Cooper-Patrick L, Powe NR, Jenckes MW, Gonzales JJ, Levine DM, Ford DE. Identification of patient attitudes and preferences regarding treatment of depression. J Gen Intern Med. 1997;12:431–8.CrossRefPubMed
12.
go back to reference Mohr DC, Hart SL, Howard I, et al. Barriers to psychotherapy among depressed and nondepressed primary care patients. Ann Behav Med. 2006;32:254–8.CrossRefPubMed Mohr DC, Hart SL, Howard I, et al. Barriers to psychotherapy among depressed and nondepressed primary care patients. Ann Behav Med. 2006;32:254–8.CrossRefPubMed
13.
go back to reference 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. 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.
14.
go back to reference Karasz A, Sacajiu G, Garcia N. Conceptual models of psychological distress among low-income patients in an inner-city primary care clinic. J Gen Intern Med. 2003;18:475–7.CrossRefPubMed Karasz A, Sacajiu G, Garcia N. Conceptual models of psychological distress among low-income patients in an inner-city primary care clinic. J Gen Intern Med. 2003;18:475–7.CrossRefPubMed
15.
go back to reference Karasz A, Watkins L. Conceptual models of treatment in depressed Hispanic patients. Ann Fam Med. 2006;4:527–33.CrossRefPubMed Karasz A, Watkins L. Conceptual models of treatment in depressed Hispanic patients. Ann Fam Med. 2006;4:527–33.CrossRefPubMed
16.
17.
go back to reference Feldman MD, Franks P, Duberstein PR, Vannoy S, Epstein R, Kravitz RL. Let's not talk about it: suicide inquiry in primary care. Ann Fam Med. 2007;5:412–8.CrossRefPubMed Feldman MD, Franks P, Duberstein PR, Vannoy S, Epstein R, Kravitz RL. Let's not talk about it: suicide inquiry in primary care. Ann Fam Med. 2007;5:412–8.CrossRefPubMed
18.
go back to reference Rudebeck CE. General practice and the dialogue of clinical practice: On symptoms, symptom presentations, and bodily empathy. Scand J Prim Health Care. 1992;Supplement:1–87. Rudebeck CE. General practice and the dialogue of clinical practice: On symptoms, symptom presentations, and bodily empathy. Scand J Prim Health Care. 1992;Supplement:1–87.
19.
go back to reference Epstein RM, Quill TE, McWhinney IR. Somatization reconsidered: Incorporating the patient's experience of illness. Arch Intern Med. 1999;159:215–22.CrossRefPubMed Epstein RM, Quill TE, McWhinney IR. Somatization reconsidered: Incorporating the patient's experience of illness. Arch Intern Med. 1999;159:215–22.CrossRefPubMed
20.
go back to reference Raue PJ, Schulberg HC, Heo M, Klimstra S, Bruce ML. Patients' depression treatment preferences and initiation, adherence, and outcome: a randomized primary care study. Psychiatr Serv. 2009;60:337–43.CrossRefPubMed Raue PJ, Schulberg HC, Heo M, Klimstra S, Bruce ML. Patients' depression treatment preferences and initiation, adherence, and outcome: a randomized primary care study. Psychiatr Serv. 2009;60:337–43.CrossRefPubMed
21.
go back to reference Good BJ, Good MD. The Meaning of Symptoms: A Cultural Hermeneutic Model for Clinical Practice. In: Eisenberg L, Kleinman A, eds. The Relevance of Social Science for Medicine. Dordrecht, Holland: D. Reidel Publishing Co.; 1981:165–96. Good BJ, Good MD. The Meaning of Symptoms: A Cultural Hermeneutic Model for Clinical Practice. In: Eisenberg L, Kleinman A, eds. The Relevance of Social Science for Medicine. Dordrecht, Holland: D. Reidel Publishing Co.; 1981:165–96.
22.
go back to reference Stoeckle JD, Barsky AJ. Attributions: Uses of Social Science Knowledge in the 'Doctoring' of Primary Care. In: Eisenberg L, Kleinman A, eds. The Relevance of Social Science for Medicine. Dordrecht, Holland: D. Reidel Publishing Co.; 1981:223–40. Stoeckle JD, Barsky AJ. Attributions: Uses of Social Science Knowledge in the 'Doctoring' of Primary Care. In: Eisenberg L, Kleinman A, eds. The Relevance of Social Science for Medicine. Dordrecht, Holland: D. Reidel Publishing Co.; 1981:223–40.
23.
go back to reference Baumann LJ, Cameron LD, Zimmerman RS, Leventhal H. Illness representations and matching labels with symptoms. Health Psychol. 1989;8:449–69.CrossRefPubMed Baumann LJ, Cameron LD, Zimmerman RS, Leventhal H. Illness representations and matching labels with symptoms. Health Psychol. 1989;8:449–69.CrossRefPubMed
24.
go back to reference Leventhal H, Diefenbach MA, Leventhal EA. Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cogn Ther Res. 1992;16(2):143–63.CrossRef Leventhal H, Diefenbach MA, Leventhal EA. Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cogn Ther Res. 1992;16(2):143–63.CrossRef
25.
go back to reference Safer MA, Tharps QJ, Jackson TC, Leventhal H. Determinants of three stages of delay in seeking care at a medical clinic. Med Care. 1979;17:11–29.CrossRefPubMed Safer MA, Tharps QJ, Jackson TC, Leventhal H. Determinants of three stages of delay in seeking care at a medical clinic. Med Care. 1979;17:11–29.CrossRefPubMed
26.
go back to reference Karasz A. The development of valid subtypes for depression in primary care settings: a preliminary study using an explanatory model approach. J of Nerv Ment Dis. 2008;196:289–96.CrossRef Karasz A. The development of valid subtypes for depression in primary care settings: a preliminary study using an explanatory model approach. J of Nerv Ment Dis. 2008;196:289–96.CrossRef
27.
go back to reference Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84:191–215.CrossRefPubMed Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84:191–215.CrossRefPubMed
28.
go back to reference Prochaska JO, DiClemente CC. Stages and processes of self-change of smoking: toward an integrative model of change. J Consult Clin Psychol. 1983;51:390–5.CrossRefPubMed Prochaska JO, DiClemente CC. Stages and processes of self-change of smoking: toward an integrative model of change. J Consult Clin Psychol. 1983;51:390–5.CrossRefPubMed
29.
go back to reference Prochaska JO, DiClemente CC. Transtheoretical therapy: Toward a more integrative model of change. Psychotherapy Theory, Research and Practice. 1982;19:276–88.CrossRef Prochaska JO, DiClemente CC. Transtheoretical therapy: Toward a more integrative model of change. Psychotherapy Theory, Research and Practice. 1982;19:276–88.CrossRef
30.
go back to reference Glanz K, Lewis FM, Rimer BK. Linking theory, research, and practice. In: Glanz K, Lewis FM, Rimer BK, eds. Health Behavior and Health Education: Theory, Research, and Practice. San Francisco: Jossey-Bass; 1997:19–35. Glanz K, Lewis FM, Rimer BK. Linking theory, research, and practice. In: Glanz K, Lewis FM, Rimer BK, eds. Health Behavior and Health Education: Theory, Research, and Practice. San Francisco: Jossey-Bass; 1997:19–35.
31.
go back to reference Pescosolido BA. Beyond rational choice: The social dynamics of how people seek help. Am J Sociol. 1992;97:1096.CrossRef Pescosolido BA. Beyond rational choice: The social dynamics of how people seek help. Am J Sociol. 1992;97:1096.CrossRef
32.
go back to reference Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995;36:1–10.CrossRefPubMed Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995;36:1–10.CrossRefPubMed
33.
go back to reference 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. 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.
34.
go back to reference Bell RA, Paterniti DA, Azari R, et al. Encouraging patients with depressive symptoms to seek care: A mixed methods approach to message development. Patient Educ Couns. 2010;78:198–205.CrossRefPubMed Bell RA, Paterniti DA, Azari R, et al. Encouraging patients with depressive symptoms to seek care: A mixed methods approach to message development. Patient Educ Couns. 2010;78:198–205.CrossRefPubMed
35.
go back to reference American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-IV. 4th ed. Washington, D.C.: American Psychiatric Association; 1994. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-IV. 4th ed. Washington, D.C.: American Psychiatric Association; 1994.
36.
go back to reference Andersen R, Anderson OW, Smedby B. Perception of and response to symptoms of illness in Sweden and the United States. Med Care. 1968;6:18–30.CrossRef Andersen R, Anderson OW, Smedby B. Perception of and response to symptoms of illness in Sweden and the United States. Med Care. 1968;6:18–30.CrossRef
37.
go back to reference Wittink MN, Dahlberg B, Biruk C, Barg FK. How older adults combine medical and experiential notions of depression. Qual Health Res. 2008;18:1174–83.CrossRefPubMed Wittink MN, Dahlberg B, Biruk C, Barg FK. How older adults combine medical and experiential notions of depression. Qual Health Res. 2008;18:1174–83.CrossRefPubMed
38.
go back to reference Lowe B, Kroenke K, Herzog W, Grafe K. Measuring depression outcome with a brief self-report instrument: sensitivity to change of the Patient Health Questionnaire (PHQ-9). J Affect Disorders. 2004;81:61–6.CrossRefPubMed Lowe B, Kroenke K, Herzog W, Grafe K. Measuring depression outcome with a brief self-report instrument: sensitivity to change of the Patient Health Questionnaire (PHQ-9). J Affect Disorders. 2004;81:61–6.CrossRefPubMed
Metadata
Title
“I Didn’t Know What Was Wrong:” How People With Undiagnosed Depression Recognize, Name and Explain Their Distress
Authors
Ronald M. Epstein, MD
Paul R. Duberstein, PhD
Mitchell D. Feldman, MD, MPhil
Aaron B. Rochlen, PhD
Robert A. Bell
Richard L. Kravitz, MD, MSPH
Camille Cipri, BS
Jennifer D. Becker, MPH
Patricia M. Bamonti, BS
Debora A. Paterniti, PhD
Publication date
01-09-2010
Publisher
Springer-Verlag
Published in
Journal of General Internal Medicine / Issue 9/2010
Print ISSN: 0884-8734
Electronic ISSN: 1525-1497
DOI
https://doi.org/10.1007/s11606-010-1367-0

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