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DOES RACE INFLUENCE THE PROVISION OF CARE TO PERSONS WITH SICKLE CELL DISEASE? PERCEPTIONS OF MULTIDISCIPLINARY PROVIDERS JOSEPH TELFAIR, DrPH, MSW, MPH University of Alabama at Birmingham JENNIFER MYERS, PhD University of Michigan
SHERREE DREZNER, ACSW, CCSW
University of North Carolina at Chapel Hill Abstract: This study examined whether multi-disciplinary health care providers (HCPs) perceived race of persons with sickle cell disease (SCD) as an influence in the delivery of health care. A total of 227 multidisciplinary HCPs completed the three-item Influence of Patient Race on Provision of Health Care Services Index (Cronbach's alpha = 0.77). Results suggest that African American HCPs were more likely to perceive race as an influence along all scale items, whereas Caucasian and other race HCPs did not. Female HCPs and those who serve adults were more likely than male HCPs and those who serve children to perceive race as having an influence on the quality of health care. Findings suggest a need for the examination of the health care delivery systems in which persons with SCD receive care to determine if race does, in fact, affect the delivery of health care and to explain the discrepancies in the perceptions of the HCPs. Key words: Race, cultural competency, discrimination, sickle cell disease, health care delivery.
One of three overarching goals for the nation outlined in Healthy People 200O1 is to reduce health disparities among Americans. Since the United
States began to colled race-specific health data 50 years ago, health differences
between African Americans and other Americans have been noted. An often,
discussed but rarely studied clinical issue is how the race of persons with sickle cell disease (SCD) influences the type and quality of care they receive. Epidemiological studies examining these differences have concluded that race
Received December 23,1996; revised March 30,1997; accepted March 30,1997.
Journal of Health Care for the Poor and Underserved Â· Vol. 9, No. 2 Â· 1998
. the stereotype of being sodally dysfunctional as a result of having a chronic condition. as well as being a member of a radal group with high rates of poor health and sodal outcomes (e.Telfair et al. and power dynamics of the wider sodety in both its polides and practices. which in turn influence their health behavior. or discuss examination findings.19"21 . for those with the second most common and milder form (hemoglobin SC).13 Blendon and colleagues14 found that African Americans were more likely than whites to report that during their most recent visit their dodor did not inquire suffidently about their pain or symptom. Gamble7 notes that medicine is not a value-free discipline.2. and. Evidence also indicates that characteristics ascribed to being African American. and teenage pregnancy).8"10 For example. These views have led to institutionalized racism and dassism. Such practices serve to reinforce the constellation of mistrustful attitudes and beliefs about the medical care system generally held by people of color.15 It is the most common genetic disorder within a specific population.4-5 Chamberlain6 argues that the majority group's views are based on negative "implied causes" that are stereotypical misconceptions about the social and health practices of African Americans. having an incidence of 1 in every 500 live black births. and the stigmatization of their condition as the "black disease. these individuals must also struggle with issues related to being African American. the role of race in the delivery of care to persons with this condition is an important issue.3 The discrimination in the health care system faced by African Americans is a function of biases against poverty and race.3"5 These attitudes have contributed to the negative health and medical care of many people of color within the health care system.15-18 Many persons with SCD must deal with lack of knowledge and understanding of their condition by providers and the general public. values.11"13 A related problem is the belief among many people of color that health and medical care providers are not really interested in them or their health.17-18 Recent results from the Cooperative Study of Sickle Cell Disease (CSSCD) show that for individuals with the most common and severe form of SCD (hemoglobin SS). Because SCD occurs most often in African Americans in the United States.000 individuals with SCD reside in the United States. the median age of death was 60 years for males and 68 for females (similar to the general population of African Americans).15 Currently. such as being poor or violence prone. 185 is a major risk fador even after other sodoeconomic factors are controlled. tell them how long it would take for prescribed medicine to work. explain the severity of the illness. rather. it reflects and reinforces the beliefs. violence. the median age of death was 42 years for males and 48 years for females. about 65. influence provider decision making and behaviors. persons who are ethnically and culturally different from health and medical care providers often do not follow through on prescribed medical regimens they do not trust.g. school dropout."15 In addition to managing a chronic condition like SCD.
22 Methods A total of 227 multidisciplinary health and medical care providers completed the provider version of the Sickle Cell Transfer Questionnaire (SCTQ) (discussed elsewhere22). a cross-sectional study was carried out in 1993 by a multidisciplinary team of dinicians and researchers at the University of North Carolina at Chapel Hill (UNC). and a national sample of providers who treat persons with SCD (taken from the National Heart. Multidisdplinary health care providers who participated in the study were recruited from the Duke/UNC Comprehensive Sickle Cell Program and its satellites and community-based affiliates. This study was part of a larger study examining the issues.g. the three items examined in this artide were asked about the SCD population as a whole. Because this important issue has not been addressed in the research and clinical pradice literature. However. because of their spedalty area (e. The provider version of the three-item Influence of Patient Race on Provision of Health Care Services Index (IPR-PHCSI. a random sample of private providers from the state of North Carolina. The purpose of this study was to examine whether multidisdplinary health care providers perceive the race of persons with SCD as influencing their health and medical care. internal mediane) had the potential of treating persons with SCD. and concerns expressed by a cadre of 12 clinidans and researchers from the Duke/UNC Comprehensive Pediatric and Adult SCD Programs and their community-based affiliates. The research presented in this artide attempts to address these questions. three focus group sessions with direct health care providers (psychosodal and biomedical) over a two-year period.186 Race and the Provision of Care Anecdotal evidence suggests that it is the association with being African American and the chronidty of SCD that may account for much of the disparity in type and quality of care received by persons with SCD. All SCTQ questions were developed specifically for the larger study and were based on patient/parent clinical concerns expressed in individual clinic encounters. who. developed specifically for this study) was induded in the SCTQ. Specifically. it asks the following: (1) Are there specific clinical care areas in which race of the person influences the type and quality of care as perceived by health care providers? and (2) What charaderistics of the provider are assodated with the perception that the race of the persons with SCD influences the type and quality of care? To address these questions. and expedations of health care providers with regard to the problem of transition of adolescents and young adults to adult care. Using methods discussed by Spedor23 and DeVellis.. many questions remain unanswered.24 the IPR-PHCSI assessed partidpants' underlying perceptions . the evidence also indicates that there is not consensus among SCD and other providers that patient race affects the delivery of care. concerns. Lung and Blood Institute roster of SCD providers) (see Table 1). Although the SCTQ was primarily concerned with issues of adolescent transition.
about the influence of race on the provision of care. (2) decisions about the adrrunistration of pain medication to persons with SCD.Telfair et al. primary specialty. as assessed by Cronbach's alpha.and within-group associations of key descriptive and categorical variables (e. Because it was important to ascertain the perceived level of agreement among providers by category. 187 TABLEl DEMOGRAPHIC CHARACTERISTICS OF THE PROVIDER SAMPLE VARMBtE Gender Female Male Race African American Caucasian Other PERCENT OF SAMPLE 138 89 66 141 20 138 38 51 37 20 U 44 75 40 174 53 227 61 39 29 62 9 61 17 23 16 9 5 19 33 18 77 23 100 Population served Child/adolescent Adult Both Primary specialty Hematologist General/family practitioner Internist Pediatrician Nurse practitioner/physician assistant Social worker/counselor Region Urban Rural Total tion of the three individual items and the overall index.. The present study is an examina- Analyses were conducted at both univariate and bivariate levels. and the highest possible score was 3. population served. age. The partidpants were asked to agree (scored as 1) or disagree (scored as 0) with three critical questions about (1) the quality of health care provided to persons with SCD. Simple bivariate statistics were used to examine between.g.77. and spedalty type. . gender. was 0.g.. and regional location were developed and used in the bivariate analysis. dummy variables (e. 0 = nonpediatrician) representing the key provider diaraderistics of race. respectively). gender. and (3) the quality of interpersonal relations between health care providers and persons with SCD (see the appendix). race. It also allowed for a dearer examination of the tendency of responses to the three items to be highly correlated in the initialbivariate analysis. The lowest possible score for the IPR-PHCSI was 0. Internal consistency of the IPR-PHCSI. 1 = pediatridan.
All analyses were carried out using SPSS/PC+. population served. Bivariate results indicated that African American providers were more likely to agree with all questions than were both Caucasians and non-African Americans. multivariate logistic regression analyses of the individual items were conduded. Bivariate results comparing responses to these questions of providers who had a primary treatment focus on persons with SCD (comprehensive centers [44 percent] versus those who did not have this focus. e. However. therefore. and regional location (Table 3). Ï• < . Based on the same rationale. health departments. comparing providers who were in hospital inpatient/outpatient settings [56 percent] versus those in community-based settings were not statistically Provider race-ethnidty. and results significant and. gender. [66 percent]). the bivariate results indicate that responses to these questions varied by the provider charaderistics of race. private pradice.. will not be discussed here or listed in Table 3). etc. African American providers were signifi- cantly more likely to agree that race is an influence on quality (76 percent.26 Results Demographic charaderistics of the sample are listed in Table 1. Health care providers espedally did not agree (77 percent) that decisions about pain medications are influenced by the race of their patients.1) bivariate results. The purpose of these analyses was to determine the strongest predictors (independent variables) that best darify the statistically significant (p < 0. Individual item results at the univariate level indicate that health care providers generally disagreed that race influences the delivery of health care to individuals with SCD (Table 2). multiple linear regression of the overall index was conducted. specialty.g.188 Race and the Provision of Care TABLE 2 ASSESSMENT: PROVIDERS'PERCEPTION OFTHE INFLUENCE OF RACE ON THE DELIVERY OF HEALTH _______CARE TO AFRICAN AMERICANS WITH SCD (N = 227)_______ VIEW PERCENTAGE AGREE PERCENTAGE DISAGREE Quality of health care influenced by fact of being African American Pain medication decisions influenced by fact of being African American Quality of interpersonal relations influenced by being African American 49 23 49 52 77 52 As indicated in Hosmer and Lemeshow.25 because of the sample size and dichotomous outcome variable (perception of race as an influence).
09) than were their colleagues.72 3.323 3.56 0. Ï• < 0. 189 TABLE 3 UNIVARIATE AND BIVARIATE ANALYSIS OF IPR-PHCSI ITEMS BY PROVIDER CATEGORY QUALITY OF HEALTHCARE % AGREE PAINMEDICAnON DECISIONS % QUALITY OF RELATIONSHIPS % AGREE 0.00 0.53* 0.10 Population served Child-adolescent Adult Both populations Gender Male Female 44 1.01 0.48* 0.92 0. that is.81 0.904 0.34 25 37 19 39 22 12 30 42 16 1 11 26 0.89 20.00 40 0. Â»Indicates an inverse relationship. internists were more likely to agree that race is an influencing fador (72 percent. on the other hand.86 0. Female health care providers were significantly more likely than male providers to agree with all three statements regarding race as an influence on the provision of health care for African Americans with SCD (30 to 54 percent females vs.11 0.00 0.40* 0.76 0.01 AGREE Ï‡2 46 45 54 29 49 60 0.47 11.01 or less) (Table 3).200 6.01 0.13 0. 12 to 37 percent males.09 0. Ï• = 0.57* 0.591* 0.49 Î¹ 0. 0.647 0.00 0.03 43 0.01 0.23* Ï‡2 0. whereas Caucasians were less likely to agree that race is an influence on quality (35 percent.22 40 49 1.06 Primary specialty Hematologist General/family practitioner Internist Pediatrician assistant 49 30 72 34 0.57* Z57 0.18* Z23* 5.23* 0.44 38 50 2.06 0.41 0.00 0. Ï• < 0.13 0.11 71 21.560 2.98Â» 0.00 35 1.274* 0.378 5. Pediatridans.91 0.21 63 4.052 2.08 60 2.00 0.86 3.21 Region Rural Urban Note: IPR-PHCSI-Influence of Patient Race on Provision of Health Care Services Index.21 0.41* 6.00).00 37 13.78 0.60 37 54 6.Telfair et al.65 0.02 0.00) in the provision of health care services for African Americans with SCD (Table 3).02 0. Gender of provider.91* 2. Table 3 indicates that with regard to the question of the effed of race on the quality of health care received by African Americans.57 0.090 5.012* 9.08 49 0.93 0.63 37 53 6.89* 9.68* 6. were more likely than other types of providers to disagree that the quality of .25 0.68 0.02 42 2.009 0.01 Race-ethnicity African American Caucasian Other 76 32.48 0.53 0.00 0. The bivariate results also reveal that gender is a fador influendng provider perspectives on these questions.07 24 1 27 9 Nurse/physician Social worker/ counselor 5 55 0.82 0.01* 0.077* 0.56* 1.235 0. those who mostly disagreed.10* 5. Provider specialty.51* 6.09 0.90 0.42 0.00 35 23.65* Î¹ 0.
01).05). Ï• < 0. Race of the provider (African American) remained significantly related to all three questions (p < 0. whereas multivariate linear regression models27 were used to assess the overall response trend of providers (the index score) (Table 4A). were female. Regional location. Given the study's small sample size. whereas provider race (African American) and provider gender (female) were the strongest overall (index score) predidors of agreement (p < 0. Ï• < 0.00). The bivariate results confirmed the univariate results that regardless of spedalty. pediatricians were again least likely to agree (29 percent. Ï• < 0. whereas social workers/counselors were more likely to agree (60 percent.02). Multivariate analyses were conducted to darify which provider charaderistic(s) had the greatest influence on the respondents' beliefs. For pain medication administration decisions.02) (Table 4B).02). providers tended to disagree that decisions about pain medication are influenced by the fad that patients are predominantly African American. Ï• < 0.190 Race and the Provision of Care health care is affected by race (66 percent. For all individual items. respectively) (Table 4). providers who were African American. Pediatridans were significantly less likely to agree (9 percent. Ï• < 0.06). Ï• = 0. both population served (adults) and gender (female) remained significant (p < 0. Type of population served. all of the provider charaderistics that were statistically significant at the bivariate level (p < 0.3). the administration of pain medications (39 percent. provider race (African American) was the strongest single predictor of the likelihood of agreement that race was an influence (p < 0. Results in Table 3 show that providers who serve adults were much more likely than those who serve children to agree that race influences the quality of health and medical care (63 percent. Similarly. and the quality of provider/patient relations. . In summary.05.00).07). Ï• < 0. population served (adults) also remained significant (p = 0. and worked in urban areas were more likely to perceive race as an influence in the provision of health and medical care to persons with SCD. For quality of health and medical care received.01) than other health care providers. Logistic regression models25 were used to examine agreement or disagreement with each of the three individual index items.1) were entered into a set of multiple regression models to avoid omitting important variables. on the question of the effect of race on the quality of interpersonal relations between providers and patients.01). were not pediatridans. treated adult patients only. Providers in urban locations were more likely than providers in rural areas to agree that race of the patient influences pain medication decisions (26 vs. Results in Table 3 show that providers in urban and rural areas differed only on the question of the administration of pain medication. 11 percent. whereas sodal workers/counselors were significantly more likely to agree than other health care providers (37 percent. Ï• = 0.
Telfair et al.38*** Quality of relationship Female African American Note: 1 = provider category.73 2.19.19-6.7231 0.4040 0.3500 0. 191 TABLE4A RESULTS OF MULHPLE LOGISTICS REGRESSION MODEL FOR INDIVIDUAL ITEMS AND PRACTITIONER CHARACTERISTICS OF MOSTLY AGREE 95 PERCENT CONFIDENCE INTERVAL Î² QUESTION CHARACTERISTICS COEFFICIENT STANDARD ERROR ODDS RATIO Quality of health care Adults served Female African American 0.34. *p = 0.6 0. however.0012 0.05.3308 1.20 0. Finally.7662 1.83-2.19*** 0.22*** Pain medication decisions Social worker/counselor Adults served Female African American Urban 0.3065 0.8 2.077-3. Examples of these comments are as follows: "Overall I agree.85-2.54 0.4087 1.44 0. it depends a lot on caregivers individually".75* 1.74 2. 0 = all others.0 1.80-11. F = 10.02-7.20** 0.14 0.54-6.15 0. Ï• = 0.75* 0.86 0.25 0.7 2.5568 1.5 3.2978 0.74-5.001.02 0. Rr = 0.98-4. Anecdotal provider comments indicated that they perceived the race of the person as negatively influencing the provision of care. "These fadors should not be trueÂ—it is most unfortunate they're due to ignorance".97-4. **p < 0.4036 0.4161 0.1 2.4987 0. it is important to note that the IPR-PHCSI items were worded in such a way as not to imply either a negative or positive influence of race but to allow for individual interpretation by the respondent.4201 0.94 1.7666 0.3543 2.1263 0.3553 0.0000.00 0.25 0.2 3.6808 0.4222 1. .2 1.9 0. ***p < 0.05.5 5.00 Social worker/counselor Female Note: For the multiple regression model. TABLE 4B RESULTS OF MULTIPLE REGRESSION MODEL FOR OVERALL INDEX AND PRACTITIONER CHARACTERISTICS OF MOSTLY AGREE CHARACTERISTIC Urban Adults African American REGRESSION COEFFICIENT 0.
these fadors require a deeper level of listening. and empathy that are also subjed to personal and social influences. Furthermore. and "In our program. and so on. individual beliefs. some of these [statements] may in fact be true". This is most likely due to the African American and female providers' heightened sensitivity to discrimination as practiced in the health and medical care systems. do not view the race of the patient as a personal issue. it is most likely true that providers who have chosen to work with this population have made a conscious decision to work with a predominantly African American population and. communicating. and as the anecdotal evidence indicates. This suggests a lack of understanding and communication between the two groups. in ERs. the monitoring of a regimen of comprehensive (quality) care. It can be argued that it is less individualized and more routinized. there are dear indications that particular groups do feel this way. The extent of these variations has significant implications for the delivery of care to persons with chronic conditions like SCD. I would 'agree' to all three [statements]. . thus higher levels of agreement would be found.192 Race and the Provision of Care "I do not feel that these issues apply to our clinic. other hospitals. given the tone of the anecdotal remarks. some variation may be expected because of the potential effect of personal biases. Thus. Of all the provider charaderistics." The following discussion will take these comments and the interpretation of patient race as a negative influence into account. therefore. African American and Caucasian health and medical care providers had opposing views about the effed of race on the delivery and quality of health care for African Americans with SCD. Caucasian and male health care providersÂ—were less likely to believe that race influenced the delivery of health and medical care. providers who historically have experienced discrimination are more likely to perceive that race negatively influences care. The exception was the strong agreement on the delivery of pain medications. and interpersonal relations. with regard to the quality of care and interpersonal relations between provider and patient. unfortunately I do feel that throughout the house staff. But the group that most often serves individuals with SCDÂ—namely. Discussion Data from this study suggest that while providers in general do not view race as influencing the delivery of health and medical care to persons with SCD. Pain is related to technical decision making about the delivery of prescribed care. and for the provider to demon- strate an adequate level of cultural competence. African American and female health care providers (of all races) were more likely to believe that race has an influence on the quality of care received. as well as their differential health and medical care experiences. this influence is perceived as negative. Furthermore. because care of this population requires not only technical expertise but a need to maintain a long-term interpersonal relationship. pain medication decisions. however. particularly among spedalists. However. and social influences on decision making and beliefs about the population.
Telfair et al. Furthermore. Providers can also work with others to build and maintain a culturally diverse and aware staff (inducting sdentists and administrators) who are sensitive to the disease management issues of persons with SCD and develop medianisms that facilitate understanding and communication between patients from diverse cultural and ethnic backgrounds and the health care providers who serve them. Future research should use a more representative and randomly selected sample of respondents. Even these preliminary findings suggest that physidans. race. Because of the cross-sectional nature of this study. gender beliefs. This is particularly important because the majority of researchers and physidans providing care for individuals with SCD are Caucasian and male and the majority of individuals with SCD are African American. African American. Acknowledgments This study was supported in part by a grant to the senior author from the Minority Health and Research Center. School of Public Health. and the sample size. these findings are consistent with other reports1"4-* and provide support for the anecdotal evidence that suggests that race of persons with SCD influences the type and quality of care they receive. Interestingly. ethnic background. Therefore. culture. physidan assistants.5 a logical next step would be a rigorous and systematic study using a series of situation-specific questions that examine the actual quality and type of care offered by providers who serve persons with SCD. It is essential that health and medical care providers and researchers who care for and study African Americans with SCD take into account and address the ramifications of race. as well as many of the reasons already discussed. and prejudices. gender. pediatridans were least likely to view race as an influence in the provision of health and medical care to persons with SCD. This is most likely due to their overall orientation and training. nurses. espedally adult and rural providers. class. and the chronidty of the condition as fadors affecting health care delivery. Despite limitations. University of North Carolina at Chapel Hill. the overrepresentation of female providers. it is believed that this study would have been strengthened methodologically if responses had been sought to a series of situational questions or scenarios specifically focusing on the relationship between patient race and service delivery. and other multidisdplinary providers caring for persons with SCD can play a major role in addressing these issues by partidpating in the development and implementation of continuing education programs that increase providers' awareness of their own disease. results of this study must be seen as preliminary. 193 but they are aware that it is a problem outside of their pradice. to determine if race in fad affects the delivery of medical care and to explain the discrepancy in the perceptions of female. and was presented at the 21st annual meeting . and Caucasian health care providers according to sex and race.
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