Using focus groups, we identified a variety of issues that depressed patients feel are important determinants of their help-seeking behavior and their preferences for treatment. These issues involved attributes of different types of treatments, aspects of patient-provider relationships, social support systems and life experiences, as well as personal coping strategies, psychological receptivity, and perceptions of stigma. The issues raised by the patients and their relative importance frequently differed from those raised by the health care professionals. Similarly, a recent survey study regarding the importance of various aspects of outpatient care showed important differences in opinion between patients and physicians; specifically, this study found that patients placed substantially greater value on the effective communication of health-related information than did physicians.33
Patients cited a wide range of strategies they used to cope with their depression before they sought medical attention. These coping strategies ranged from positive activities to denial and negative behaviors. Many patients used spirituality as a way of coping with their depression, and black patients cited spirituality as a coping mechanism more frequently than white patients. Blacks also discussed using church and church members for support more frequently than whites. Despite the salience of spirituality, a relatively small number of patients felt that their spiritual beliefs caused them to delay seeking medical attention.
Social support was generally seen as positive and necessary. Most patients drew support from family members, friends, and coworkers. However, many patients felt that their usual support systems were ineffective during a depressive episode because of their own discomfort with asking for help, their need to appear strong to family members and friends, and the lack of understanding regarding depression on the part of many family members and friends.
Patients spoke of a variety of experiences that led to their eventual recognition that they were depressed (psychological receptivity). The experiences were similar and included most of the symptoms and signs known to be associated with depression. However, individual interpretations of symptoms varied, and patients had a wide range of attributions of their illness. Although some patients strongly believed that life experiences had led to their depression, others believed that medical problems contributed to their depression or that it was strictly a biological illness.
Stigma was perceived as a particularly important barrier to getting treatment for the black patients in this study. Many of them felt that the idea of professional help for mental health problems was not culturally acceptable among their family members or peers. The number of comments regarding stigma was much smaller in the white group. However, patients in both groups said they felt there was a social stigma associated with having depression as well as getting treatment for it. One previous study of treatment seeking for depression suggested that blacks and whites have similar perceptions of mental-illness stigma; however, the same study found that blacks have more fears related to mental health treatment.18
Neighbors and Jackson, using data from the National Survey of Black Americans, showed that blacks with emotional problems and grief are more likely to use informal help only or no professional help at all as compared with their counterparts with physical problems.34
It is unclear whether stigma related to mental illness could partially explain this pattern of help-seeking behavior.
Patients made numerous comments about the impact of their relationships with providers. In our study, as in previous work, patient attitudes toward caring (humaneness) and curing (competence) aspects of physician behavior appeared to reflect the same dimension.35
The providers’ technical skills as well as their interpersonal skills were raised as important in patients’ decisions of whether or not to disclose their innermost feelings and to complete the treatment. In the black patient focus group, the issue of cultural mistrust and concerns about being used as a “guinea pigs” for medical experimentation were raised.
Other researchers have cited the important influences of interpersonal trust and social trust on the quality of physician-patient interactions.36
Interpersonal trust is deemed a prerequisite for many aspects of effective care, including patients’ willingness to reveal potentially stigmatizing information about their health-related behaviors, to describe personal feelings and thoughts that are necessary to differentiate physical and mental disorders, and to accept prescribed changes in personal behavior or treatments that may have risks or be difficult to follow.36
Social trust plays a different but important role; it tends to be influenced more by media exposure and general reputation than by firsthand knowledge.36
Nonetheless, it is particularly important for individuals belonging to ethnic minorities, for whom distrust in the health care system may be connected to a general distrust in any social institution with a history of discriminatory practices.
Numerous attributes of each type of treatment were raised as concerns. For medications, concerns were raised about side effects, effectiveness, addiction potential, dependency on medication in order to function, and the length of time needed to complete treatment. For counseling, concerns were raised about its effectiveness, the frequency of appointments, the length of time needed to complete the treatment, the negative impact of discussing painful experiences, and the comfort level of talking about personal problems with others. For patient education, patients wanted to know what to expect from the various treatments and what the likelihood of a successful outcome was for each type of treatment. In the black patient group, two individuals had been hospitalized for depression. The inpatient experiences were generally positive. The one major concern raised was the loss of autonomy.
Patients had a number of concerns related to access to care. The availability of mental health professionals belonging to one’s gender, race, and religious background were raised as concerns more often by black patients. The location of care, patient and provider time and convenience, and the impact of insurance were also raised as concerns. Patients raised relatively few concerns regarding coordination of care between general medical and specialty mental health sectors. Most of these dimensions of access have been described in previous work.37,38
However, the patients in our study also noted specific characteristics of depression (fatigue, lack of motivation, self-blame) that presented challenges to obtaining care.
We asked each patient to give a summary statement of advice to health professionals regarding the treatment of depression. The summary statements indicated most patients had some level of expectation regarding the interpersonal aspects of care that were not met, and a few patients had expectations regarding diagnostic testing that were not met. Previous studies have shown that patient expectations of care are derived from several sources and are often not elicited by physicians.39,40
Health professionals could use information about these expectations to negotiate patients’ acceptance of their diagnoses and recommended treatment.
There are some limitations of this study and its methodology. During focus group discussions, a small, relatively homogeneous group of people are invited to participate in a focused discussion in order to provide data of a qualitative nature. We formed only two patient focus groups, one black and one white. These two groups might have provided a narrow range of patient input. Because our focus group participants were from one geographic area, it is possible that they were not a representative group of all whites and blacks with depression in the United States. However, a large number of positive and negative aspects of help-seeking behavior and care were identified, suggesting that the representation was broad, if not comprehensive.
Second, the majority of patients in this study were receiving or had received treatment. Many of these individuals had delayed seeking treatment, and they discussed their reasons for delaying care as well as the decision-making process that eventually led to their receipt of treatment. However, their viewpoints and perceived barriers to treatment may differ from those of individuals who choose not to seek treatment at all.
Third, the possibility of response bias exists. Some participants may not have been honest and forthcoming with their opinions because of a lack of comfort with other group members, concerns about confidentiality, or a lack of comfort with the moderator. The level of participation and enthusiasm displayed by our study subjects makes these biases unlikely. Because our moderator was a white female, the possibility exists that black patients were not completely honest about the issues that were related to race and mental health treatment. Further research using focus groups should be done to determine whether different issues of concern to patients arise with other groups of depressed patients, and with black patients talking with a black moderator. Finally, the focus group method is useful for identifying major themes, but because of the qualitative nature of the data obtained, analyses of subtle differences must be made with caution.
Notwithstanding its limitations, this study identified a wide range of attitudes and preferences deemed important to high quality of care for depression by individuals with a recent depressive episode. We used a comprehensive, rigorous, patient-centered approach, requiring independent review and agreement by several investigators and clinicians, to analyze the data. Our findings lay the foundation for the elements that should be measured by primary care physicians and researchers to assess patient attitudes toward and preferences for treatment of depression. These findings also provide early insights regarding the sources of differences between patients in receipt of any treatment as well as the type and adequacy of treatment received for depression. The use of a survey instrument that incorporates these findings to quantitatively assess patient attitudes and preferences might provide more definitive explanations. Clinicians, researchers, and policymakers need to incorporate the range of factors identified by patients into their decision making for individuals with depression.
American Board of Internal Medicine
Important Note: The Board offers all of its Subspecialty Certification Examinations annually in November.
1997 ABIM Recertification Examinations in Internal Medicine, its Subspecialties, and Added Qualifications
Registration Period: Ongoing and continuous since July 1, 1995
Final Examination Date: November 19, 1997
The Board’s new comprehensive Recertification Program consists of an in-home, open-book Self-Evaluation Process (SEP) and a proctored Final Examination which will be administered annually in November. In order to be eligible to apply for the November Final Examination, Diplomates must return all their required at-home open-book SEP Modules to the Board office by August 1, 1997 and must submit their recertification Final Examination application by September 1, 1997.
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