How Can We Know What They Know? The Role of Formative Research in Investigations of Depression

1. How Can We Know What They Know?The Role of Formative Research in Investigations of Depression Debora A. Paterniti, PhD Departments of Internal Medicine & Sociology and the Center for Healthcare Policy and Research Robert A. Bell, PhD Departments of Communication & Public Health Sciences and the Center for Healthcare Policy and Research

2. Session Objectives • To describe the use of formative research in understanding experiences of people with depression symptoms • To advance the case for “finding out” through a mixed-methods approach to research 3. To review major findings

3. “Mixed Methods” • Combined use of qualitative and quantitative approaches to understand social behavior and differences in perspectives • Benefits • Stronger validity to understanding depression-related care seeking • Weaknesses of one method of understanding are outweighed by the strengths of another • Rich detail on individual experience as well as group trends and preferences • Expanded scope of understanding

4. Tradeoffs in MethodologyQuantitative “Versus” Qualitative Methods

5. Focus Group StudiesMethodological Overview • Purposes • To provide a foundation for formative survey studies • To inform interventions aimed at improving recognition of and communication about depression in primary care settings • Purposive sample of 130 participants (20 groups) • Gender and income level • Targeting communities and participants by zip code and income • Eligibility: • Personal or family history of depression • Working-age adults (25-64 years) • Method: • Brief questionnaire • Guided group discussion

6. Focus Group StudiesSome Main Findings • Participants described 3 stages leading to engaging in care for depression (Epstein et al.) • “Knowing”: recognizing that something was wrong • influenced by patient personality and social attitudes • “Naming”: finding words to describe distress • affected by differences between personal experience of depression and narrow clinical conceptualizations, colloquial use of the word “depression,” and stigma • “Explaining”: seeking meaningful attributions • influenced by 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

7. Focus Group StudiesSome Main Findings Four paradoxes of depression care seeking (Paterniti et al.) The paradox of identity: self recognition & significant other denial The paradox of cause: biochemical and environmental The paradox of social engagement: self worth & inadequacy The paradox of intervention: searching for normalcy & accepting stigma Men described the following experiences (Rochlen et al.) Conflict between gender-related messages and experiences of depression & beliefs about appropriate help-seeking behaviors Alternative symptom profiles that interfere with the recognition of depression and willingness to seek help Participants described organizational and relational barriers to care for their mental health needs (Kravitz et al.) Organizational barriers included issues of access, time and insurance Relational barriers included perceived problems with PCPs’ competence, openness and trustworthiness

8. Conjoint SurveyMethodological Overview • Purpose: To assess the message preferences of individuals affected by depression • Sample: 249 members of an online depression support group • Adaptive Conjoint Analysis (ACA) of 32 messages defined by 10 message attributes • Conjoint Survey Components: • Rating Questions • ACA Pair Questions • Demographic and Health Status Questions

9. Conjoint SurveyACA Rating Question Example

10. Conjoint SurveyACA Pairs Question Example

11. Conjoint SurveyMajor Findings • Focus groups told us what to say in our interventions. The conjoint survey showed us how to say certain things. • Example: Focus groups told us to underscore the prevalence of depression in interventions. Conjoint survey respondents told us to do this using lifetime prevalence data. • ACA results generally supported guidance coming from the focus groups. • Example: Focus groups told us to compare depression to other chronic diseases. The ACA sample preferred messages that did this.

12. General Population SurveyMethodological Overview • Population-based telephone survey of 1054 California adults • Originally surveyed as part of the 2008 California Behavioral Risk Factor Surveillance System (BRFSS) • Subjects reporting a history of depression diagnosis in the BRFSS survey were over-sampled • Questionnaire addressed past and anticipated care-seeking, reasons for not seeking care, beliefs about depression and treatment, treatment preferences, et cetera

13. General Population SurveySome Main Findings • Barriers to Seeking Care (Bell et al.) • 2 in 5 respondents reported ≥1 reason for not disclosing depression to their doctor • Some common reasons: treatment aversion, beliefs about the PCPs role, worries about medical record confidentiality, stigma • Females, Hispanics, and those of lower SES perceived more barriers to talking to one’s doctor • Those with a family history of depression were less likely to be reticent to talk with their doctor • The variable perceived barriers to care-seeking was associated with a desire to avoid treatment

14. General Population SurveySome Main Findings • Medication Adherence Among Hispanics (Fernandez y Garcia et al.) • Comparison of 839 non-Hispanic whites and 139 Hispanics • Spanish-speaking Hispanics, in comparison with nonHispanics Whites, were more antidepressant averse. This difference did not hold for English-speaking Hispanics. • For all language/ethnic groups, believing that depression is a real medical condition was associated with lower aversion to medication.

15. General Population SurveyMain Findings • Sex Differences in Treatment Engagement (O'Loughlin et al.) • Males were more likely than females to prefer a “wait and see” approach to managing depression • Respondents (regardless of sex) who scored high on Tough Image were more likely to prefer a “wait and see” approach Sample item: “People should always try to project an air of confidence even if they really do not feel confident inside” • The Tough Image variable partially mediated the effects of sex on preference for a “wait and see” approach

16. Implications • Implications for Formative Research • Benefits of iterative research process • Convergence of findings • Enriched scope of understanding • Implications for Clinical Intervention Designs • Different message strategies for different audience segments • Potentially better: Tailored messages for audiences of one • Implications for Clinical Practice • PCPs should be alert to patients’ ill-defined distress and heterogeneous symptoms • PCPs should promote explanations of depression that comport with patients’ lived experience, reduce stigma, and facilitate care-seeking