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Family and Community Medicine ETHNIC NOTIONS & HEALTHY PARANOIAS : Understanding of the Context of Experience and Interpretations of Healthcare Encounters Among Older Black Women. Colette Marie Sims, PhD., Family & Community Medicine, The University of Arizona E thnic N otions are societal ideas about “race” that are deeply embedded in the fabric of Black / White consciousness as core indicators of “racial” difference, rather than ethnocultural differences. These have implications for patient-centered quality care. Healthy Paranoias reflect the “earned” suspicion and mistrust among older Black women of both pre/ post civil rights healthcare systems in the U.S., and are used as protective and hyper-vigilant factors. Thus, have implications for access and utilization of care. Ethnic notions & healthy paranoias also run on a steady diet of perceptions, expectations, and beliefs of both healthcare providers and older Black women. GOAL: To report the first-hand, audio-taped, transcribed narrative data on experiences with the health care system collected from older Black women residing in Tucson, Arizona BACKGROUND: In Arizona, African Americans comprise only 4.1% of the population and are the smallest racial/ethnic minority group. In U.S. between-State variation among racial/ ethnic ambulatory patients who reported good communication with health providers – Arizona was one of 7 states ranked “worse for communication” by patients (AHRQ, 2005). Since 1994 African Americans have ranked worse than average on 53 of 70 (statewide) health status indicators, higher than many other larger minority groups in this state. STUDY: Sample: 50 AA women > 40 years of age ( 2% of age- eligible population). Data collected from March 2002 - March 2004 with 75% as qualitative (ethnographic) and 25% as quantitative (demographic, health status, health behavior.) ETHNOGRAPHY: Women shared their experiences when interacting with doctors, healthcare support staff, diagnostic technicians and the health care system over their life course. Interviews covered perceptions, expectations, beliefs, details of experiences, and perspectives that had impacted trajectories of health seeking behavior. Analyses explored their “points of view” on cultural differences that emerge within predominantly White healthcare settings, through interethnic communication, and how shared personal experiences (or others’ experiences) as a fund of knowledge may influence ethnic notions, thus supporting healthy paranoias. Many women spoke candidly about how their experiences within pre/ post civil rights healthcare encounters have influenced their hyper-vigilance, mistrust, perceptions and “feelings” that they would not be treated as optimally as White women would be in similar healthcare settings. The way in which ethnocultural differences and interethnic communication are framed and understood are critical elements of patient centeredness, as these impact the women’s ability to stay healthy, get better, live with illness or disability. THESE ARE QUALITY OF CARE ISSUES. CONCLUSION: Health disparities are often created through non-clinical influences, such as cultural differences, individual experiences, and beliefs about “race”. Study participants noted that they had perceived or experienced bias through non-verbal cues such as a lack of eye contact, a lack or hesitation of physical touch, “facial movements, twitches and lip curls,” or through actual speech such as the tone or speed of voice, or the type of language used. These experiences left study participants feeling disrespected by both the providers / support staff. Ethnocultural narrative cues to behavior that referenced quality of care, compliance, aggression, disdain or anger within healthcare encounters were misunderstood within predominately White healthcare settings by older Black women. For example, not being offered a referral for further tests, or “the amount of time that it took to be called in for their exam (especially when they had made an appointment for the exam or health problem weeks ahead of time),” were factors that were spoken about as supporting their expectations of receiving less than optimal care. Therefore, it seems reasonable to conclude that: Neither older Black women themselves, Nor the health care system as a whole Nor individual White healthcare personnel Are fully insulated from attitudes toward race that are prevalent (though often unacknowledged) in the larger society. Thus neither may be aware that their ethnic notions & healthy paranoias may lead to misinterpretations and misunderstandings in establishing respectful partnerships among practitioners, patients and their families. EXPERIENCES (OWN & OTHERS) BIAS Ethnocultural Differences Funds of Knowledge BELIEFS PERCEPTIONS Non Verbal Cues Documented Atrocities Misinterpretations EXPECTATIONS I’ve seen it myself, where the healthcare workers tend to treat Black people differently than Caucasian people. I don’t know if they feel [Blacks] won’t speak up or if they believed [Blacks] don’t know any better or expect any better…but they should know that we ALL talk [word of mouth] …and I will tell Ms. Carla, (2004) In some ways we [Black women] have been burnt so bad as individuals and [by] hearing the horror stories from family members and friends that we are just generally very skeptical because we believe that we are not seen as real people to them… doctors Ms. Wiletta, (2003) I heard the one about that Black woman who got the speculum left in her while the doctor went to see about another patient…now that wouldn’t happen to a White woman… it’s a true statement! Ms. Sheila, (2003) I think I coerced a doctor one time, cause I was Black…I was explaining the problem with my jaw, I was sitting on the table, he was sitting on one of the stools with wheels…I use my hands a lot when I talk… I don’t know if I scared him or what because he backed up and hit his head - BAM- on the wall and then says “there’s nothing wrong with you” Now I don’t know what else could have made him react like that except that he thought I was going to hit him…and so I thought, Okay…he’s not for me Ms. Juanita, ( 2003) This research has been funded by a grant from the National Institutes of Health/National Institute on Aging - F31 AG021329 and partially supported by a grant from the National Center for Complementary and Alternative Medicine - R01 AT003314-03A1-S1. CONSIDERATIONS VITAL TO THE HEALTH OF OUR AGING MINORITY POPULTIONS: (1) Since healthcare personnel are the more powerful actors within a clinical setting the development of respectful partnerships between racial/ethnic patients and healthcare personnel must be part of clinic “best practices” as an important dimension of quality of care. In order to provide all patients with the best possible care healthcare providers must build these coalitions, thus encouraging racial/ethnic patients to actively participate in healthcare interactions. (2) Patient-centered approaches must be adopted within design, implementation and analysis of intervention and promotion efforts directed toward eliminating disparities in the health and well being among racial/ethnic minorities. Hence a patient-centered awareness is encouraged among individuals and communities regarding how their ethnocultural influences may impact the intensity and the quality of care delivered and received. (3) Aspects of patient-centered quality of care include values, beliefs, perceptions, expectations and experiences of both patients and healthcare personnel. If we are to improve interethnic communication, transform current approaches to health disparities and support “best practices” as part of the science of inclusion and of eliminating health disparities. UNDERSTANDING THESE CONTEXTS WILL BE ESSENTIAL AS THEY HAVE IMPLICATIONS FOR ACCESS, UTILIZATION, ADHERENCE, COMPLIANCE AND DELIVERY OF CARE.
