The Basics of Negotiating Mental Health Care

1. The Basics of Negotiating Mental Health Care Margarita Alegria, Ph.D. Harvard University and Cambridge Health Alliance. Worcester County Mental Health and Cultural Competency Conference Agenda May 31, 2006

2. The Changing Demographics of the US Population • The mental health system is challenged to meet the needs of our increasingly diverse population. • African Americans, Asian Americans, Latinos, American Indians, Alaskan Natives, and Native Hawaiians accounted for 30% of the US population in 2000. • These groups are projected to account for about 40% of the population in 2025.

3. Patient Reports of How Culture Matters in the Clinical Encounter “Understanding. Sometimes you come from different backgrounds, different lifestyles. Sometimes they don’t get overall picture and think things are easier. They tend to water things down.” “Language is always important, but doctors need to be bicultural. The way one thinks and express himself/herself has to do with the culture. One is going to feel like is being understood better. The doctor can visualize it because he/she already lived it or because he/she has a previous knowledge. He/she doesn’t have to be from the same race but to speak the same language and have knowledge of the culture.

4. Overview of Presentation • Present trends and findings of the rates of mental health problems and service disparities across ethnic and racial groups in the US. • Discuss some of the mechanisms that could explain mental health service disparities. • Illustrate the importance of better negotiating mental health care.

5. Combined NLAAS/NCS-R Study • A national psychiatric epidemiologic survey conducted to measure psychiatric disorders and mental health service usage in a nationally representative sample of Asians and Latinos (NLAAS). • We also use data from the NCS-R (conducted in 2001-2002) to incorporate contrasts to Non-Latino whites and African Americans. • NLAAS was conducted in 2002 and 2003 in English, Spanish, Chinese, Tagalog and Vietnamese, based on the respondents’ language preference • Contains detailed information on psychiatric disorders using the Composite International Diagnostic Interview (CIDI) and chronic conditions to do health adjustments.

7. Levels of Unmet Need by Racial/Ethnic Groups

8. Differences in proportion in predicted probability of any 12-month MH service use after transforming age, gender and health status of minority to match that of non-Latino Whites

9. Mechanism 1:Failure in Health Care Markets Health Disparities: Decreased access and utilization of health care services and resources Primary Mechanisms: Failure of public health in health care markets Precipitating Factors Limited Political Power & Voice of Immigrant Groups

11. Mechanism 2 :Differential Pathways into Health Care Precipitating Factors Primary Mechanisms: Differential pathways into healthcare Health Disparities: Differential treatment, differential outcomes Lack of Patient Problem Recognition Lack of Provider Referral Uninsurance

12. 1. Psychiatric Language: (15.8%) - Depression - Drug or alcohol problems - Schizophrenia 2. Wide Range of Symptoms of Psychiatric Disorders: (34.4%) - Uncontrolled crying - Nervousness - Excessive aggression 3. Traumas: (8.3%) - Death of family or close friend - Sexually abused 4. Interpersonal Problems: (26.7%) - Marital or family problems - Alcoholism or drug use of a family member - Tense relationships with friends or neighbors 5. Physical Problems: (7.1%) - AIDS; Epilepsy - Chronic back pain 6. Social Problems: (6.4%) - Becoming unemployed - Economic problems - Bad living conditions Clients’ description of their MH problems-Approximately half of Clients see a Mismatch between what they need and what they get in care

13. Mechanism 3:Poor Patient-Provider Interaction Health Disparities: Drop out from care, Differential TX outcomes Primary Mechanisms: Poor patient-provider interaction Precipitating Factors Different meaning of signal, signal endorsed at different Illness threshold, signal too vague or muddled

14. BIAS or PREJUDICE • lack an understanding of the psychosocial needs and the living circumstances of minority families ( Finn, 1994; Guendelman, 1985) and consequently provide culturally inappropriate interventions (Castaneda, 1994) • AA and Latinos are more likely to feel that a doctor or health provider judges them unfairly or treats them with disrespect because of their race or ethnic background (Brown et al., 1999; LaVeist et al., 2000). • Having a successful interaction between caregiver and clinician has an effect on the degree of resistance or cooperation, the level of disclosure(Chiu, 1994),and the rejection of treatment options(Temkin-Greener and Clark, 1988).

15. Did the provider accept you and make you feel understood? * Only asked of participants who are in MH care in the past twelve months. P = .01, National Latino and Asian American Study, 2005

16. An Interpretation of an Interpretation • Most treatment is dependent on: • patients’ capacity to describe symptoms and present non-verbal cues that corroborate symptom descriptions -- this is the patient’s interpretation of a culturally constructed experience • clinicians’ ability to accurately comprehend patients’ language used for symptoms, correctly translate it and attribute meaning to those symptoms. Most of this process is driven by clinician’s own interpretation of symptom and affect – this is also the clinician’s interpretation of a culturally constructed experience

17. Interpreting the Patient’s signal using Clinician’s own cultural interpretations “The diagnosis was anxiety disorder, but obviously I was feeling at that time that he was feeling quite depressed, and I was connecting more with the sense of not only the panic thing, but also the sense of being lonely and sad.. So I was taking cues from the patient’s reporting, but also clues from the patient’s [tones, gestures], you know, non-verbal, you know the mood disorder was more like, this guy is depressed, although he was not saying, ‘I’m feeling depressed’...”

18. Different Meaning of the Signal • Clinicians’ limited cultural competence may cause misdiagnosis of psychosis in cross-cultural settings • Lower “signal to noise ratio” for majority clinician-minority patient dyads as a factor in psychiatric misdiagnosis (Balsa & McGuire, 2003) • Ethnic-specific “information variance” –psychotic-like complaints not well investigated in less valued social groups (Strakowski et al, 1997) • Endorsement of psychotic symptoms by Latinos: signals emotional distress but not necessarily true psychosis

19. “A Good Therapist or Clinician Can Understand Any Patient, Independently of their Gender, Race, Ethnicity or SES.” ‘I liked the Puerto Rican counselors…I felt they could understand where I was coming from and what I was about. • Most providers trained in the U.S. help their patients become independent, however Latinos value interdependence. Therapists unaware of this value may lose patients (Ruiz, 1995). • Latino clients mention the desire for warmer and more open relationships with their providers, while US providers feel their training reinforces interpersonal boundaries.

20. Asymmetrical Information Transfer Development of hypotheses about “What is the Problem” Central because it determines the questions that will be asked, what treatment alternatives will be offered, and how outcomes will be interpreted. The patient-provider match of the explanatory model of illness and expectations for the visit have been shown to be important in determining outcome of Tx .

21. Right Question Project: A Different Approach to Patient Activation Minority patients are typically disengaged from health care, w/ limited opportunity to take charge of their healthcare. This leads to low retention in health care. Evidence of higher patient involvement leads to higher retention, more satisfaction and better outcomes.

22. Treatment Engagement and Retention • After adjusting for age, sex, race/ethnicity, and education, intervention subjects were almost 5 times more likely to be retained in treatment (odds ratio [95% confidence interval]: 4.88 [2.17, 11.00]). In terms of having at least one scheduled visit during the follow-up period, intervention subjects were almost 15 times more likely than control subjects (adjusted OR = 5.5 [1.95, 123.2]) -- the unusually high odds ratio is attributed to the fact that virtually all intervention subjects had a scheduled visit. When assessing the intensity of visits for those subjects having at least one visit, intervention subjects were 29% more likely to be engaged in treatment than control subjects (rate ratio [95% CI]: 1.29 [1.16,1.42)].

23. RQP continued • Adapt RQP methodology and materials offering activation skills to Latino and African Caribbean patients. RQP methodology is not to supply clients with solutions to problems, but rather provide clients with democratic experiences to develop their own solutions by formulating questions and focusing on key decisions. • Patients learn how to formulate questions about their mental health care. (How will this medication work for me?) • Patients learn how to focus on key decisions that are made during the course of treatment. (What will happen if I decide not to continue w/ medication?) • Patients learn to formulate a disease management plan in conjunction with their provider. (What Tx options will best work for me given my life circumstances?)

24. Conclusions • Much of the MH service disparity for minority groups seems to be more in accessing care than in the intensity or the expenditures once in care. This suggests that not focusing on access might be a problem. • Policy interventions might be central to dealing with disparities in access-such as revising PWRORA or fiscal requirements for covering mental health care for immigrants. • Differential pathways into care might be one target to explore the mechanisms of service disparities, particularly social services and criminal justice pathways. Central seems to be the role of problem recognition and patient’s health literacy. • Poor provider patient communication and interaction requires understanding both the content and differential process that might take place when provider and patient don’t share the same cultural background. Strategies for patient activation and empowerment might be key for reducing disparities.