"I didn't know what was wrong:" how people with undiagnosed depression recognize, name and explain their distress.
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.


METHODS
Focus groups, analyzed qualitatively.


METHODS
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.


METHODS
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.


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.
Epstein
Ronald M
RM
Department of Family Medicine, University of Rochester Medical Center, Rochester, NY, USA. Ronald_Epstein@urmc.rochester.edu
Duberstein
Paul R
PR
Feldman
Mitchell D
MD
Rochlen
Aaron B
AB
Bell
Robert A
RA
Kravitz
Richard L
RL
Cipri
Camille
C
Becker
Jennifer D
JD
Bamonti
Patricia M
PM
Paterniti
Debora A
DA
D000328:Adult; D001294:Attitude to Health; D003863:Depression / Q000175:diagnosis* / Q000523:psychology*; D059026:Diagnostic Self Evaluation; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D012647:Self-Assessment
BMC Public Health. 2009 Feb 20;9:61
19228435
Arch Fam Med. 2000 Mar;9(3):222-7
10728107
Psychol Rev. 1977 Mar;84(2):191-215
847061
Ann Fam Med. 2006 Nov-Dec;4(6):527-33
17148631
JAMA. 2000 Aug 23-30;284(8):1021-7
10944650
J Affect Disord. 2004 Jul;81(1):61-6
15183601
Med Care. 1979 Jan;17(1):11-29
759741
J Nerv Ment Dis. 2008 Apr;196(4):289-96
18414123
Psychiatr Serv. 2004 Dec;55(12):1379-85
15572565
Arch Intern Med. 1999 Feb 8;159(3):215-22
9989533
Patient Educ Couns. 2010 Feb;78(2):198-205
19674862
Am J Mens Health. 2010 Jun;4(2):167-75
19477750
Ann Behav Med. 2006 Dec;32(3):254-8
17107299
J Gen Intern Med. 2007 Dec;22(12):1731-9
17972141
Ann Fam Med. 2007 Sep-Oct;5(5):412-8
17893382
J Gen Intern Med. 2003 Jun;18(6):475-7
12823655
J Consult Clin Psychol. 1983 Jun;51(3):390-5
6863699
J Health Soc Behav. 1995 Mar;36(1):1-10
7738325
Arch Gen Psychiatry. 2001 Jan;58(1):55-61
11146758
Epidemiol Psichiatr Soc. 2006 Oct-Dec;15(4):276-83
17203620
J Gen Intern Med. 1999 Sep;14(9):569-80
10491249
Qual Health Res. 2008 Sep;18(9):1174-83
18689531
JAMA. 2005 Apr 27;293(16):1995-2002
15855433
Soc Sci Med. 2005 Apr;60(7):1625-35
15652693
Psychiatr Serv. 2009 Mar;60(3):337-43
19252046
J Gen Intern Med. 2000 Aug;15(8):527-34
10940143
Health Psychol. 1989;8(4):449-69
2583080
J Gen Intern Med. 1997 Jul;12(7):431-8
9229282