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Stigma and safe havens: A medical sociological perspective on African-American female epilepsy patients
Epilepsy & Behavior 7 (2005) 106–115 www.elsevier.com/locate/yebeh
Stigma and safe havens: A medical sociological perspective on African-American female epilepsy patients Angelia M. Paschal a,*, Elizabeth Ablah a, Ruth Wetta-Hall a, Craig A. Molgaard a, Kore Liow b,c a
Department of Preventive Medicine and Public Health, University of Kansas School of Medicine—Wichita, Wichita, KS,USA b Via Christi Comprehensive Epilepsy Center and Neurophysiology Laboratory, Wichita, KS, USA c Department of Internal Medicine and Department of Psychiatry and Behavioral Medicine, University of Kansas School of Medicine—Wichita, Wichita, KS, USA Received 22 January 2005; revised 26 March 2005; accepted 30 March 2005 Available online 14 June 2005
Abstract Purpose. Very little is known about the attitudes and behaviors of minorities with epilepsy. This pilot study explored access to health care, help-seeking behaviors, and adherence to treatment among African-American females with epilepsy. Methods. Ethnographic interviews were conducted with 10 African-American female adults. Results. Findings indicate four major obstacles to care: limited financial resources, lack of knowledge about epilepsy among African-Americans, poor patient–provider communication, and lack of social support. Social support impacted individuals seeking surgery, and also affected purchasing medication, adherence to medical treatment, and needed transportation. Lack of knowledge and misinformation about epilepsy in the African-American community and poor communication with physicians contribute to the social stigma felt by these patients. Conclusions. The behavioral epidemiology of epilepsy among African-Americans is lacking. This disease exacerbates health disparities for this population. These findings point to a need for a safe haven for these individuals. Ó 2005 Elsevier Inc. All rights reserved. Keywords: Epilepsy; African-American; Health disparities; Stigma; Misinformation; Social support; Miscommunication
1. Introduction The National Institutes of Health defines health disparities as the ‘‘differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States’’ [1]. A large body of literature has documented significant racial and ethnic disparities in access to health care and health outcomes, with minority Americans generally receiving less health care and suffering worse health [1,2]. Reducing health disparities among different racial and ethnic groups and socio*
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economic levels in the United States leads to improved health and is a responsibility of all health care providers and public health practitioners [3]. Like many other health conditions that are overly represented in minority populations (e.g., heart disease, cancer, diabetes, HIV/AIDS) [1,4], significant health disparities exist among epilepsy patients [4]. Even though epilepsy is a condition that affects people of all races, ages, and various socioeconomic levels, research indicates that minorities are disproportionately affected by this condition. The number of epilepsy patients per 1000 persons among African-Americans under age 45 is 6.1, compared with 4.3 among whites [4]. Minority groups face substantial barriers to care such as language and communication barriers, medical practices that differ from their own
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beliefs and traditions, fear and mistrust of health care institutions, and a lack of knowledge about how to navigate the system [3]. These sociocultural barriers can then lead to difficulties in scheduling appointments, misunderstandings between clinicians and patients, misdiagnoses, and low adherence to treatment [3,5]. Epilepsy disparities also exist with respect to income and education. Persons of low socioeconomic status, often in minority communities, are at greater risk for epilepsy. The incidence of epilepsy among individuals aged 45 years and younger and having an annual family income of less than $10,000 is 13.2 per 1000. However, the incidence rate for the same age group with an annual family income of $35,000 or more is only 3.0 per 1000 [4]. Furthermore, a subsample of adults with epilepsy in one study (2.1% among the sample of 8057 adults) had lower educational attainment and lower household incomes [6]. The 2002 study also found that among individuals with various health problems, those with epilepsy reported significantly worse health status compared with those without epilepsy [6]. A study in 2000 by Fisher et al. revealed similar findings [7]. The reasons for these differences in the incidence of epilepsy have not been identified [8]. Furthermore, researchers do not know whether epilepsy among poor minorities is due to racial variations or socioeconomic factors [8,9]. Additionally, minorities and low socioeconomic groups might be at greater risk for epilepsy in the United States because they have higher incidences of seizure risk factors such as stroke [8,10], diabetes [4,11], and hypertension [4,10]. In addition to income and racial and ethnic disparities, regional disparities also influence the prevalence and incidence of epilepsy. Nationally, the prevalence of epilepsy is estimated to be 0.5 to 0.8% , with approximately 181,000 new cases being diagnosed each year [4]. However, the Midwest has the highest rate of epilepsy, with 7.9 cases per 1000 [4]. In comparison, the Northeast, South, and West register at 4.4, 3.7, and 4.6 cases per 1000, respectively. Locally, where the current study took place, there are 13,000–21,000 cases in Kansas and 3000–5000 in Sedgwick County [4]. The majority of previous literature has focused on the perspectives of medical care professionals, while few have considered the voices of the patients themselves [7,12–15]. The majority of studies that have focused on patientsÕ perspectives have been internationally based [16–21], although some exceptions exist [22–26]. The Brainstorm Series has produced three books [24–26] that provide personal accounts of American patientsÕ experiences with epilepsy, including The Brainstorms Woman: Epilepsy in Our Lives [24], which is a compilation of stories told by women with epilepsy. While these books provide insight into the individual and interpersonal aspects of seizures and epilepsy, they do not focus on these experiences from a racial and ethnic perspective or from
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the standpoint of how researchers and practitioners can use the information to generate studies or institute improved services, projects, and practices. Applied studies that investigate the perceptions and experiences of minority epilepsy patients and translate findings into meaningful action to reduce health disparities for epilepsy treatment are needed. At present, very little is known about the attitudes and behaviors of minorities with epilepsy [12], and even less is known about the factors that influence them. The information obtained from the current study is critical to fulfilling this gap in the literature and might better guide health researchers, physicians, and other health care professionals in their study and treatment of epilepsy among minority patients. Additionally, such findings can serve to guide initiatives such as those by the National Institute of Neurological Disorders and Stroke (Reducing Disparities in the Treatment of Epilepsy) [18], and others. The catchment area for the present study was the Midwest, specifically, Wichita, KS, USA. More Kansans live in Wichita than any other community in the state, and the city is one of the most racially and ethnically diverse [27]. Approximately 75% of the cityÕs population is non-Hispanic white (identical to 75% nationally), with 11% black or African-American (12% nationally) and 10% Hispanic or Latino (13% nationally) [27]. The median household income for Wichita is $39,939 (compared with $41,994 nationally). Overall, educational levels for the city are also comparable to national statistics; approximately 84% of the citizens are high school graduates or higher (compared with 80% nationally), and about 25% have bachelor degrees or higher (compared with 24% nationally) [27].
2. Methods The purpose of this qualitative study was to investigate by in-depth interviews the knowledge, attitudes, and beliefs associated with epilepsy among AfricanAmerican patients. Moreover, factors contributing to insufficient access to health care, inadequate help-seeking behaviors, and low adherence to treatment among African-American epilepsy patients were assessed. To this end, the following research questions were explored: (1) What are the perceived barriers or factors that are associated with obtaining adequate medical attention for epilepsy? (2) What factors influence their care-seeking behaviors? (3) What factors influence adherence to treatment? (4) What are their recommendations for potential solutions to the above problems? 2.1. Sample To serve as a catalyst to stimulate further research, this pilot study consisted of ethnographic interviews
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conducted by an African-American woman (A.M.P.) with 10 African-American female adults between 29 and 58 years of age. These cases were diagnosed with epilepsy at an epilepsy tertiary center (3/10) or at a local primary health care facility (7/10). Originally, participants were recruited from these two sites to maximize the number of African-American women participating in the study and to investigate whether there were any differences between them. There were no major differences among participants from the two sites. Two of the women in the sample were married at the time of the interviews, two were divorced, one was widowed, and the remaining five had never been married. Four of the women (4/10) had at least one child under the age of 18 residing in their homes. Half of the sample had governmental health insurance (Medicaid and/or Medicare), three had private health insurance, and two were uninsured. While four women indicated that they had an annual household income of $20,000 or less, one-half of the sample had incomes between $20,001 and $30,000, and one participant chose not to respond to the interviewerÕs question about household income. Three of the participants had full-time jobs, and seven were unemployed, although one of the unemployed participants was also a full-time college student. The age at epilepsy onset for these participants ranged from 26 to 49 years. Seizures were uncontrolled in six participants. No state, regional, or national data are available to compare the characteristics of this sample with those of other African-American women with epilepsy. 2.2. The interviews This study used qualitative methodology, which adds knowledge and understanding about a particular social phenomenon, and helps reveal social processes and events [28,29]. In-depth or extensive interviews are a widely accepted qualitative research method for determining the attitudes and motivations of people within systems [28,30]. Unstructured interviews are ideal for evaluating subjective motivations and insight into behavior and trends [29,30]. Sometimes specific motivations or barriers may be invisible to researchers or health care administrators because of educational, cultural, or socioeconomic differences between researchers and the providers or clients; however, unstructured interviews or focus groups are helpful in identifying them. Furthermore, barriers to health care delivery by providers, issues concerning health care access, and patient noncompliance problems oftentimes involve cultural and lifestyle factors that may be unique to the location, existing services available, and demographics of the population to be assessed. In-depth interviews can be useful in identifying these factors as well. Three of these interviews were conducted in person and seven were conducted by telephone. As a pilot study, these interviews
were sufficient to gather preliminary information to stimulate further studies. Approval for the study was obtained from the Human Subjects Committee at the University of Kansas School of Medicine–Wichita and the Via Christi Regional Medical Center institutional review board. 2.3. Interview guide The unstructured, extensive interviews were conducted with 10 African-American adult women with epilepsy, and lasted between 1 and 1.5 hours. Holstein and Gubrium suggest that questionnaires used in interviews should be used as guides, not scripts, for the interview process [30]. In other words, they could serve as advisories or conversational agendas rather than as procedural directives. Because this approach was used in the interviews for this study, the manner in which the interview questions unfolded varied from participant to participant, although all of the questions were addressed. The investigators for this study created the interview questions, and then tested the interview guide on two African-American patients with epilepsy (one from each site of recruitment). Some questions in the guide were eliminated or revised as a result of these interviews. A sample of the interview questions is given in Table 1. 2.4. Data analysis The interviews that were conducted in person were audio recorded and later transcribed, using pseudonyms to protect the identities of participants, as well as other individuals, agencies, and organizations mentioned in the interviews. Similar procedures occurred with the interviews that were conducted via telephone. However, these interviews were typed in real time during the interview rather than recorded. Qualitative data analysis is based on an inductive process of organizing the information or data collected into categories and identifying patterns and/or relationships among the categories that emerge from the data [30]. Therefore, after transcription the next step involved analyzing the data by reading through the transcripts and coding individual sentences and paragraphs. Although preconceived categories were established, categories and subheadings were revised according to the emergent codes and themes of the data. This method is recommended, as precoded or preestablished categories are inadequate for capturing the phenomena that may emerge from the open-ended interviewing format [29,31]. The Non-numerical Unstructured Data Indexing, Searching and Theorizing (NUD*IST) computer software program was instrumental in organizing the data. The data were then linked to the research questions and to insights provided in the literature.
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Table 1 Sample of interview questions Medical treatment
Social support
Other questions
1. When did you begin treatment for epilepsy? Describe your experience.
1. How supportive has your family been since youÕve had epilepsy? Your friends, if any?
2. Do you take your medication regularly? If so, what things help? If not, why not? What can be done to improve this? 3. Is money ever an issue in your getting the medication you need or the treatment you want? Why or why not? 4. What is the single most important obstacle in getting the care you need or the thing that keeps you from getting the medical treatment you want?
2. Did they influence your decision to seek treatment? Surgery? If so, how?
1. What is the greatest challenge youÕve faced in treating or managing your epilepsy condition? 2. What has been the greatest challenge in getting treatment?
3. What did your family and friends think when they first found out about your condition? What did they say? Do? 4. Have any of your relationships changed since you had epilepsy? Explain.
5. How do you compare the services you receive to what you believe others receive for epilepsy treatment?
5. What resources in the community, e.g., church, health centers, civic organizations, are helpful to you?
6. Are you able to read and understand the prescriptions and the directions for treatment that are given to you by your doctor? Pharmacist?
6. What has been the most useful thing in helping you deal with epilepsy?
3. Results Four major factors influenced access to care, helpseeking behaviors, and adherence to treatment among African-American epilepsy patients: (1) availability or amount of financial resources, (2) knowledge about epilepsy, (3) quality of patient–provider communication, and (4) amount of social support. 3.1. Financial resources Financial limitations were the single most important barrier in accessing epilepsy treatment and adhering to oneÕs medical treatment. Nearly all of the participants discussed some economic challenges that were related to their epilepsy treatment, which were related to their household income limitations. Participants reported that financial restrictions particularly impacted health care treatment and access in terms of transportation, ability to obtain medication, and adherence to treatment plans. Associated with low economic resources was the lack of transportation. According to Kansas law, individuals are restricted from driving for 6 months after a seizure [32]. While this legal restriction was an important barrier in accessing treatment, transportation restrictions were most often discussed in the context of financial restrictions and low social support. The participantsÕ dependence on others for transportation severely hindered their abilities to attend their appointments and to engage in unscheduled events. Phone interviews were scheduled with the majority of these participants because of their inability to obtain transportation to the
3. Do you experience any problems with transportation? Explain why or why not. 4. If you had the opportunity to say anything you wanted to a physician or other health care professional about improving care or services for epilepsy patients, what would you want them to know? To researchers? 5. What types of programs would be most helpful to you or to other AfricanAmericans in getting the help or treatment you or they need? 6. Do you know anyone else who has epilepsy? How did you become acquainted with them?
clinics for the interview sessions. Lack of transportation (although two participants had cars and were able to transport themselves) served as barrier beyond not having an automobile, as their inability to afford a car or regular taxi transportation, when needed, served as a significant barrier. In one interview, an individual could not stay until the end of the session since she had depended on a family member to drive her to the meeting. Although a follow-up phone interview was conducted with this participant, the situation highlighted the dependence of many of these individuals on others for basic activities. In addition to transportation problems, lack of adequate financial resources impacted participantsÕ abilities to obtain adequate medical attention. Not being able to afford medication, or to purchase all of their prescribed medication, was a common complaint mentioned among four women in the sample. As one of the uninsured patients described: After getting my first prescription, I went to the pharmacy to buy the medication. After filling the prescription, the pharmacist or pharmacy tech, IÕm not sure which one she was, said ‘‘that will be five-ninety-one [$5.91].’’ So, I gave her a ten dollar bill to cover the charge. But she said, ‘‘No, that will be $591.00.’’ I was really in shock when she said that, but I told her that I couldnÕt afford it. I just went home and cried.
Another patient initially described how she took her medication regularly: As the interview progressed, she explained that because her insurance did not cover the generic brand for one of her medications, and she could only get her medications when she was able to afford it, which was ‘‘not very often.’’ Several participants discussed how their lives had financially worsened after the onset of their condition.
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As one participant stated, ‘‘getting epilepsy has put me in poverty.’’ Based on these participantsÕ experiences, inadequate financial resources were associated with various challenges that included barriers associated with accessing treatment for epilepsy, maintaining appropriate help-seeking behaviors (attending appointments), and adhering to treatment plans. 3.2. Knowledge about epilepsy According to the findings, a general lack of knowledge about epilepsy exists in the African-American community. The participants shared accounts of misconceptions about their conditions. One participant discussed how her church members had rumored that she did not suffer from a neurological condition but rather from drug abuse. Although the participant claimed that she was not taking illegal drugs, her fellow church members assumed that illegal drug use caused her seizures. Furthermore, most of the participants described how they knew very little about epilepsy before the onset of this condition. Many reported spending substantial time educating family members, too. Two patients discussed how relationships had ended (one womanÕs husband had divorced her, and another had lost a long-time boyfriend) because of the condition. As one participant explained: I remember being in the grocery store with my boyfriend at the time, and he became very upset with me. I guess he was real jealous and all. Anyway, we went up to the counter and all of a sudden I went into one of my trance-like states, and he just went ballistic because he thought I was staring at the grocery clerk. He thought I was flirting with him. I tried to explain why I had done that [the partial miniseizure], but he [the ex-boyfriend] never believed it.
These situations draw attention to the stigma attached to epilepsy in the African-American community. In another example, when asked whether she knew of others with epilepsy, the participant described how she knew a man with this condition, yet she went on to describe how he ‘‘had those other seizures.’’ The interviewer noted that the participant stated ‘‘other’’ with disdain, and that the participant had wrinkled her face and waved her hand when mentioning it. When asked to explain the remark, the participant stated that the man was different from her in that she had minor seizures while ‘‘unlike me, he has those . . . those terrible seizures,’’ briefly demonstrating how he convulsed. The interviewer noted that the participant herself seemed to stigmatize the worse forms of epilepsy although she, too, had epilepsy. Half of the sample reported that they did not initially receive help for their epilepsy because they did not understand the condition, and the seizures were initially very rare. Furthermore, because others misunderstood the various sources of these conditions, which varied
(e.g., one woman thought that the seizures she initially experienced might have been related to a severe allergic reaction to something she ate, although this was later disproved), they did not seek help right away. She stated, ‘‘I didnÕt realize it was a seizure when it happened. I knew I felt funny and that something strange was happening to me. My mom knew it was a seizure and she thought I probably had a bad reaction to something I ate or something. We thought it would just go away; but it didnÕt.’’ Misinformation and lack of knowledge about epilepsy affected the help-seeking behaviors in some of these participants. 3.3. Patient–provider communication The third most commonly expressed factor that influenced these participantsÕ knowledge, attitudes, and beliefs about epilepsy comprised their relationships and interactions with their primary health care physicians. Among the participants that received tertiary care for epilepsy, higher satisfaction was expressed for the care they received. They also discussed being pleased with the medical care received from, and the relationships they had with, their primary care physicians. However, this was not the case among participants who received medical attention only from the local primary health care facility. Furthermore, only one of the seven participants who received care from the primary health care facility was aware that additional care was available through a tertiary epilepsy center in the city. Many patients reported that they did not feel comfortable asking their physicians about their conditions. As one participant stated about her doctor, ‘‘I wish she would just treat me like a human being; just slow down and talk to me and act like she cares and wants to answer my questions.’’ In general, participants expressed that they wanted a comfortable, ‘‘safe’’ place where they did not feel intimidated and felt they could ask questions. A few (3/10) stated that their physicians did not explain their epilepsy condition satisfactorily. Interestingly, some participants reported wanting more than just medical advice. Some wanted their doctors to tell them if they should seek psychological help, see a pastor or spiritual advisor, or consider alternative treatment or additional forms of treatment. One woman wondered if yoga would help her become less anxious, thereby reducing her seizures. A statement made by one patient summarized these desires, ‘‘I want them to treat the whole me.’’ 3.4. Social networks and social support Social networks and social support appeared to be associated with transportation, medication compliance, and views about surgery for the participants in this
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study. Those who expressed having adequate social support (6/10) also indicated having more transportation available than did the others. They also discussed having some, although limited, access to additional financial resources when needed; this was helpful in purchasing medications when they were unable to buy them. Positive perceived social support might also be associated with greater compliance to treatment. Among two of the six women who expressed having adequate social support, discussions took place about how their family (or a particular family member) helped them adhere to their medical regimen, encouraging them to take their medicine at the designated times, even as far as bringing a glass of water and the medication to them when it was time. Yet, in an opposing example, one participant explained: My husband left me many years ago. IÕm basically all alone now. My parents are no longer living and I have one brother, but I canÕt move to Texas with him. So, I mostly depend on my in-laws who live here to get me where I need to go. But they have things to do and I canÕt ask them all the time. TheyÕre struggling, too, so they canÕt help me get what medicine I need either. So, I do what I can do, like getting what I can get and going where I can go. ThatÕs about all I can do.
When pointedly asked whether she felt lonely, the same patient explained that she was indeed lonely, and she felt that her epilepsy condition was ‘‘a curse.’’ Furthermore, she was only one of two patients in the sample who did not attend church. This lack of overall support seemed to impact her ability to pay for her medications (no one could assist her), to adhere more closely to treatment (not being able to afford the medications she needed), and to demonstrate better help-seeking behaviors for her condition (not having reliable transportation to attend appointments). The six women who reported having strong social support also discussed how their families helped shape their attitudes about surgery. All patients were asked to discuss their views about having surgery when and if it should be recommended. Only among those patients who discussed having strong family support was family discussed as a central factor in shaping their views. In three of the cases, participants stated that they would have surgery if it was recommended and if their family supported this idea. As one participant mentioned, ‘‘I wouldnÕt mind going through with the surgery if it was recommended; but if my husband and my family didnÕt want me to do it, I donÕt know—I donÕt think I could do it.’’ One participant had already had surgery and her family had been supportive. In two other cases, the participantsÕ families were opposed to surgery although it had been recommended. Consequently, these participants believed they should not have surgery performed as their families were strongly opposed to it. Finally, when examining social support as represented through other venues (community organizations,
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churches, neighborhood associations), there was minimum support in their local communities and churches for their epilepsy conditions. For instance, among those who said they attended church on a regular basis (8/10), all but one reported that the churches were not a source of support or understanding for their epilepsy problem. Most stated that their epilepsy was not common knowledge in their churches; therefore this perceived lack of support might be due to their decisions to keep their epilepsy unknown, probably out of fear of being stigmatized as some expressed. Although many explained that their churches were generally a source of comfort, they wanted their churches to provide information to others about epilepsy, organize social support activities (e.g., support groups), and offer congregational and individual prayers for their conditions. Some participants discussed that when their churches focused on health issues or provided health fairs, hypertension and diabetes were usually emphasized. As stated by one participant, ‘‘If the church is suppose to be the backbone of our community, then why canÕt I go to them for this problem [referring to epilepsy] without them thinking that IÕm on drugs or something?’’
4. Discussion Inadequate access to epilepsy medical care, inadequate help-seeking behaviors for this condition, and low adherence to treatment among African-American epilepsy patients is better understood in the light of the findings provided in this study. Among the most pronounced factors that influence these are limited financial resources, poor knowledge of epilepsy, challenges in patient–provider communication, and low social support. Limited financial resources were a prominent theme that covered many factors including patientsÕ inability to pay for medications and/or medical appointments, as well as lack of transportation. Individuals mentioned inadequate financial means more frequently than other factors they found problematic in their ability to obtain adequate medical care and to adhere to their medical regimens. The Fisher et al. study revealed that approximately 25% of their sample of 1023 considered discrimination or public ridicule to be the worst thing about having epilepsy [7]. Misinformation about epilepsy or lack of knowledge about this condition certainly influenced when individuals sought care, their level of privacy about their condition, and how their family members and the general community reacted to their epilepsy condition. This lack of knowledge about epilepsy further stigmatized the condition in their community. Inadequate patient–provider communication was another theme that emerged from the interview data. The
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literature suggests doctor–patient relationships can be improved with cultural competency training or education [2,33,34]. Many participants believed their physicians needed to better communicate with them. It was not clear as to how much the patients contributed to this communication problem, but the need for improved interaction and communication was clear. The provision of culturally competent services holds promise in improving the access to and quality and utilization of medical care, while reducing disparities. The Institute of Medicine calls for changes in how health care providers approach their practice [1]. Cultural competence necessitates a greater understanding and awareness of differences in health values and beliefs of their low-income, minority patients. Understanding the complexity of life circumstances of this population may help with achieving the goal of delivering quality health services to patients with epilepsy. AdayÕs framework for studying vulnerable populations provides a frame of reference for understanding the relationship between socioeconomic factors and health and health care needs of vulnerable populations [35]. The underlying assumption of this model is that health is dependent not only on the medical care infrastructure, but also on social and economic forces; therefore, vulnerable groups may not have sufficient access to opportunities and resources to sufficiently maintain their health. The model maintains that a network of interdependence and social capital minimizes the risks of poor physical, mental, or social health. Vulnerable groups may have fewer social connections to assist with health needs. This study suggested that social support might be a factor in individuals seeking certain medical procedures (e.g., surgery). A recent study by Burneo et al. showed that African-Americans were less likely than non-Hispanic whites to undergo surgical treatment [36]. African-American women had a 60% less chance of undergoing surgery even after controlling for potential demographic, socioeconomic, medical insurance coverage, and clinical confounders [36]. The current study illustrated that lack of social support may partially explain why these women do not obtain surgical treatment. Further research on this relationship and other sociocultural factors is needed. Social support also affected whether individuals had additional support in purchasing medication, adhered to medical treatment, and had transportation when needed, supporting AdayÕs model. Although practically all of the participants perceived that they received little or no social support for their epilepsy through churches, community organizations, and agencies, the researchersÕ assessment of local resources revealed that several groups and resources exist in the city for people with epilepsy. The fact that participants were not aware of these resources indicated a need for coordinated services
and/or a need to increase awareness of these services among epilepsy patients in this community. While these findings might not be specific to AfricanAmerican women, this population was disproportionately poor [37] and might resultantly experience financial limitations and lack of knowledge about some health conditions (e.g., epilepsy). According to the Institute of Medicine, even when income, age, insurance status, and severity of conditions are comparable to those of their white counterparts, African-American patients are more likely to experience worse health outcomes and are less likely to receive routine medical procedures [38]. Thus, many of the findings in the current study (with the exception of social support) might be more common in African-Americans and other minority groups. While health disparities among minority epilepsy patients have been noted [4], little is known about culturally appropriate interventions to address these disparities. 4.1. Limitations Although many qualitative research methods use small sample sizes [28], there are still limitations in terms of generalizability for this study. Whereas many of the findings are most likely universal, the findings might not be generalizable to African-Americans in other regions. Additionally, African-Americans are not a monolithic group. Nonetheless, there is a dearth of literature on this population, and these findings are insightful in determining what can be done to better serve this group of epilepsy patients. Another limitation in this study relates to the method of data collection. As only three interviews were conducted in person and the others were phone interviews, there was some inconsistency. Initially, the data collection method that was planned for the study was focus groups. Difficulty was experienced in arranging focus groups among these patients because of barriers related to transportation and time conflicts. Modification of these plans resulted in three in-person interviews and seven phone interviews. Some nuances that were evident in the in-person interviews (e.g., facial expressions and body language) were lost in the phone interviews. Nonetheless, in both methods, rich, valuable information was obtained in these in-depth interviews. To date, this information has not been collected in other studies for this population. Another limitation in this study was that it did not examine specific types of epilepsy among patients. The only qualifying characteristics required were that the individuals were over the age of 18, were African-American, and had been diagnosed with epilepsy. Furthermore, the study did not establish a comparison group; therefore, it is difficult to assess whether the findings are specific to African-Americans. Finally, because the
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majority of participants in this study had low socioeconomic status, it is impossible to determine whether the results of this study were due to low income and/or race. Nonetheless, this study provides another milestone in the epilepsy literature by obtaining rich data from this targeted population through in-depth interviews and using these data to present potential ways to reduce health disparities in this population. 4.2. Implications Future studies should assess associated barriers to medical care access, appropriate help-seeking behaviors, and adherence to treatment among minority epilepsy patients to explore what could be done to reduce health disparities. Participants shared several ideas that could be considered for future projects or studies in this regard. 4.2.1. Education/awareness campaigns It is evident that epilepsy carries a stigma in the African-American community according to the findings from this study. The families discussed lack of knowledge among themselves, families, and the general community about epilepsy. The African-American community can greatly benefit from efforts to create awareness and knowledge about epilepsy. As earlier stated, misinformation and lack of knowledge about epilepsy affected the participantsÕ help-seeking behaviors. There is a strong need for education and awareness in this community. A previous study conducted in the United Kingdom stressed the importance of conducting further research into cultural attitudes toward epilepsy [39]. Lack of or limited knowledge about epilepsy has also been associated with more negative attitudes [40]. 4.2.2. Epilepsy education for primary care providers An important finding from this study was that patients who received tertiary treatment (specialized health care directed at a particular health problem) from the epilepsy center were pleased with the services, the interactions with physicians at that center, and their primary health care physicians, whereas patients who received care only from the primary health care facility (which provides treatment for general health conditions) were not as pleased with the treatment for their epilepsy conditions. This disparity might be partially explained by a high turnover rate among physicians at the primary care clinic over the past 5 years. Although the high turnover in the primary health care clinic likely impacted the quality of care the patients received and patient–provider interaction, further studies are needed to investigate this difference. Furthermore, only one patient in the primary health care facility was aware that a tertiary center for epilepsy existed. Others from that facility were not knowledgeable about epilepsy surgery and had been
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provided very little information about it. This echoed the results found in Swarztrauber and colleaguesÕ study which indicated that none of the six African-American participants had heard very much about epilepsy surgery [12]. Further studies are needed. 4.2.3. Improved patient–provider communication As the findings in this study suggested, the communication between providers and patients must be examined. Although it is highly unlikely that physicians will be able to fully render the time and attention the patients desire, alternative ideas need to be considered. There is a growing trend for cultural competency training among medical professionals [34]. Information from the target population, in this case African-American epilepsy patients, could be successfully integrated into cultural competency training. Focus groups conducted with 24 individuals with epilepsy demonstrated a strong need for culturally competent approaches in providing treatment to patients with epilepsy [12]. This study found that patients believed that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively [12]. Although patient factors such as compliance play a large role in disparities in medical care, physicians and other medical staff are often in the best position to impact these factors and to implement strategies that seek to ensure the highest quality of medical care [41]. 4.2.4. Church-based interventions Although participants indicated that their churches had not been supportive in addressing their epilepsy specifically, they expressed that they generally found comfort in their churches. Although the desire for enhanced church support might be common to all who suffer from epilepsy and other health problems, historically there has been a long tradition of reliance of African-Americans on their churches for moral, social, and political support [42,43]. Thus, there is room for researchers to capitalize on this strength by considering church-based health interventions for this group of patients. Several church-based health interventions have been successful at targeting other health issues for this population [44–47]. The same could be done with epilepsy. 4.2.5. Culturally specific social support groups Finally, one salient finding in this study was the lack of support felt by many participants. Only one of the 10 participants personally knew another individual affected by epilepsy. These individuals felt stigmatized, misunderstood, and isolated. Three of the participants mentioned that a support group in some form would be beneficial to other African-Americans suffering from epilepsy. One participant recommended that organizations consider a telephone social support system
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whereby patients could call and get support when they needed encouragement; this would also help those who have transportation challenges. Other racial and ethnic groups might find support groups very useful. For instance, similar groups could be established for Native American epilepsy patients. Support groups could be targeted at only epilepsy patients, patients and their families, and/or churches, and/or include the general community. In addition to having the benefit of providing social support, through enhanced understanding these interventions could potentially alleviate the stigma of epilepsy in this community.
References [1] National Institutes of Health [online]. 2004 [cited 2005 Jan 3]. Available from: URL: http://www.nih.gov. [2] Institute of Medicine (U.S.). Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington: The Institute; 2002. [3] Wells SA, Black RM. Cultural competency for health professionals. Albany: Boyd; 2000. [4] Centers for Disease Control and Prevention [online]. 2004 [cited 2005 Jan 3]. Available from: URL: http://www.cdc.gov. [5] Hazzard A, Hutchinson SJ, Krawiecki N. Factors related to adherence to medication regimens in pediatric seizure patients. J Pediatr Psychol 1990;15:543–55. [6] Kobau R, DiIorio CA, Price PH, et al. Prevalence of epilepsy and health status of adults with epilepsy in Georgia and Tennessee: Behavioral Risk Factor Surveillance System, 2002. Epilepsy Behav 2004;5:358–66. [7] Fisher RS, Vickrey BG, Gibson P, et al. The impact of epilepsy from the patientÕs perspective: I. Descriptions and subjective perceptions. Epilepsy Res 2000;41:39–51. [8] National Institute of Neurological Disorders and Stroke [online]. 2004 [cited 2005 Jan 2]. Available from: URL: http:// www.ninds.nih.gov. [9] Epilepsy Foundation [online]. 2003 [cited 2005 Mar 17]. Available from: URL: http://www.epilepsyfoundation.org. [10] National Center for Health Statistics. Health, United States 2004 with Chartbook on Trends in the Health of Americans. Hyattsville, MD: U.S. Gov. Printing Office; 2004. [11] National Diabetes Information Clearinghouse (NDIC). National Diabetes Statistics. NIH Pub. 02-3892. Fact sheet [online]. 2003 [cited 2003 Dec 12]. Available from: URL: www.niddk.nih.gov/ health/diabetes/pubs/dmstats/dmstats.htm. [12] Swarztrauber K, Dewar S, Engel Jr J. Patient attitudes about treatments for intractable epilepsy. Epilepsy Behav 2003;4:19–25. [13] Chappell B. Epilepsy: patient views on their condition and treatment. Seizure 1992;1:103–9. [14] Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. Quality of life of people with epilepsy: a European study. Epilepsia 1997;38:353–62. [15] Trostle JA, Hauser WA, Susser IS. The logic of noncompliance: management of epilepsy from the patientÕs point of view. Cult Med Psychiatry 1983;7:35–56. [16] Elwyn G, Tood S, Hibbs R, et al. A Ôreal puzzleÕ: the views of patients with epilepsy about the organization of care. BMC Fam Pract 2003;4:1471–2296. [17] Kyngas H. Patient education: perspective of adolescents with a chronic disease. J Clin Nurs 2003;12:744–51. [18] Eklund PG. AdolescentsÕ lived experience of epilepsy. J Neurosci Nurs 2003;35:40–9.
[19] Birbeck GL, Kalichi EM. The functional status of people with epilepsy in rural sub-Sharan Africa. J Neurol Sci 2003;209:65–8. [20] Risdale L, Kwan I, Morgan M. How can a nurse intervention help people with newly diagnosed epilepsy? A qualitative study of patientsÕ views. Seizure 2003;12:69–73. [21] Mills N, Campbell R, Bachmann MO. What do patients want and get from a primary care epilepsy specialist nurse service? Seizure 2002;11:176–83. [22] Hightower S, Carmon M, Minick P. A qualitative descriptive study of the lived experiences of school aged children with epilepsy. J Pediatr Health Care 2002;16:131–7. [23] Morrell MJ, Flynn K. Women with Epilepsy: A Handbook of Health and Treatment Issues. Boston: Cambridge Univ. Press; 2003. [24] Schachter SC, Krishnamurthy KB, Cantrell DT. The Brainstorms Woman: Epilepsy in Our Lives. Philadelphia: Lippincott Williams & Wilkins; 2000. [25] Schachter SC, Montouris GD, Pellock JM. The Brainstorms Family: Epilepsy on Our Terms. Philadelphia: Lippincott–Raven; 1997. [26] Schachter SC. Brainstorms: Epilepsy in Our Words. Philadelphia: Raven Press; 1993. [27] U.S. Census Bureau, American Fact Finder [online]. 2000 [cited 2005 Mar 8]. Available from URL: http://factfinder.census.gov. [28] Silverman D. Interpreting Qualitative Data: Methods for Analyzing Talk, Text and Interaction. Thousand Oaks, CA: Sage; 2001. [29] Strauss A, Corbin J. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage; 1990. [30] Holstein JA, Gubrium JF. The Active Interview. Thousand Oaks, CA: Sage; 1995. [31] Dey I. Qualitative Data Analysis. New York: Routledge; 1993. [32] Krauss GL, Ampaw L, Krumholz A. Individual state driving restrictions for people with epilepsy in the US. Neurology 2001;57:1749–50. [33] Brach C, Fraser I. Can cultural competency reduce racial and ethnic health disparities? A review and conceptual model. Med Care Res Rev 2000;57:181–217. [34] Anderson LM, Scrimshaw SC, Fullilove MT, Fielding JE, Normand J. Task Force on Community Preventive Services. Culturally competent healthcare systems: a systematic review. Am J Prev Med 2003;24(Suppl. 3S):68–77. [35] Aday LA. At Risk in America: The Health and Health Care Needs of Vulnerable Populations in the United States. 2nd ed. San Francisco: Jossey–Bass; 2001. [36] Burneo JG, Black L, Knowlton RC, Faught E, Morawetz R, Kuzniecky I. Racial disparities in the use of surgical treatment for intractable temporal lobe epilepsy. Neurology 2005;64:50–4. [37] U.S. Census Bureau [online]. 2000 [cited 2005 Mar 8]. Available from URL: http://www.census.gov. [38] Institute of Medicine, Smedley BD, Stith AY, Nelson AR, editors. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press; 2003. [39] Wright J, Pickard N, Whitfield A, Hakin N. A population-based study of the prevalence, clinical characteristics and effect of ethnicity in epilepsy. Seizure 2000;9:309–13. [40] DiIorio CA, Kobau R, Holden EW, et al. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy Behav 2004;5:965–75. [41] Kaiser Family Foundation. [online] 2003 [cited 2005 Jan 3]. Available from: http://www.kff.org. [42] Campbell MK, James A, Hudson MA, et al. Improving multiple behaviors for colorectal cancer prevention among African-American church members. Health Psychol 2004;23:492–502. [43] Hatch J, Derthick S. Empowering Black churches for health promotion. Health Values 1992;16:3–11.
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[46] Resnicow K, Jackson A, Wang T, et al. A motivational interviewing intervention to increase fruit and vegetable intake through black churches: results of the Eat for Life trial. Am J Public Health 2001;19:1686–93. [47] Campbell MK, Motsinger BM, Ingram A, et al. The North Carolina Black Churches United for Better Health Project: intervention and process evaluation. Health Educ Behav 2000;27:241–53.
Stigma and safe havens: A medical sociological perspective on African-American female epilepsy patients Angelia M. Paschal a,*, Elizabeth Ablah a, Ruth Wetta-Hall a, Craig A. Molgaard a, Kore Liow b,c a
Department of Preventive Medicine and Public Health, University of Kansas School of Medicine—Wichita, Wichita, KS,USA b Via Christi Comprehensive Epilepsy Center and Neurophysiology Laboratory, Wichita, KS, USA c Department of Internal Medicine and Department of Psychiatry and Behavioral Medicine, University of Kansas School of Medicine—Wichita, Wichita, KS, USA Received 22 January 2005; revised 26 March 2005; accepted 30 March 2005 Available online 14 June 2005
Abstract Purpose. Very little is known about the attitudes and behaviors of minorities with epilepsy. This pilot study explored access to health care, help-seeking behaviors, and adherence to treatment among African-American females with epilepsy. Methods. Ethnographic interviews were conducted with 10 African-American female adults. Results. Findings indicate four major obstacles to care: limited financial resources, lack of knowledge about epilepsy among African-Americans, poor patient–provider communication, and lack of social support. Social support impacted individuals seeking surgery, and also affected purchasing medication, adherence to medical treatment, and needed transportation. Lack of knowledge and misinformation about epilepsy in the African-American community and poor communication with physicians contribute to the social stigma felt by these patients. Conclusions. The behavioral epidemiology of epilepsy among African-Americans is lacking. This disease exacerbates health disparities for this population. These findings point to a need for a safe haven for these individuals. Ó 2005 Elsevier Inc. All rights reserved. Keywords: Epilepsy; African-American; Health disparities; Stigma; Misinformation; Social support; Miscommunication
1. Introduction The National Institutes of Health defines health disparities as the ‘‘differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States’’ [1]. A large body of literature has documented significant racial and ethnic disparities in access to health care and health outcomes, with minority Americans generally receiving less health care and suffering worse health [1,2]. Reducing health disparities among different racial and ethnic groups and socio*
Corresponding author. Fax: +1 316 293 2695. E-mail address: [email protected] (A.M. Paschal).
1525-5050/$ - see front matter Ó 2005 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2005.03.020
economic levels in the United States leads to improved health and is a responsibility of all health care providers and public health practitioners [3]. Like many other health conditions that are overly represented in minority populations (e.g., heart disease, cancer, diabetes, HIV/AIDS) [1,4], significant health disparities exist among epilepsy patients [4]. Even though epilepsy is a condition that affects people of all races, ages, and various socioeconomic levels, research indicates that minorities are disproportionately affected by this condition. The number of epilepsy patients per 1000 persons among African-Americans under age 45 is 6.1, compared with 4.3 among whites [4]. Minority groups face substantial barriers to care such as language and communication barriers, medical practices that differ from their own
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beliefs and traditions, fear and mistrust of health care institutions, and a lack of knowledge about how to navigate the system [3]. These sociocultural barriers can then lead to difficulties in scheduling appointments, misunderstandings between clinicians and patients, misdiagnoses, and low adherence to treatment [3,5]. Epilepsy disparities also exist with respect to income and education. Persons of low socioeconomic status, often in minority communities, are at greater risk for epilepsy. The incidence of epilepsy among individuals aged 45 years and younger and having an annual family income of less than $10,000 is 13.2 per 1000. However, the incidence rate for the same age group with an annual family income of $35,000 or more is only 3.0 per 1000 [4]. Furthermore, a subsample of adults with epilepsy in one study (2.1% among the sample of 8057 adults) had lower educational attainment and lower household incomes [6]. The 2002 study also found that among individuals with various health problems, those with epilepsy reported significantly worse health status compared with those without epilepsy [6]. A study in 2000 by Fisher et al. revealed similar findings [7]. The reasons for these differences in the incidence of epilepsy have not been identified [8]. Furthermore, researchers do not know whether epilepsy among poor minorities is due to racial variations or socioeconomic factors [8,9]. Additionally, minorities and low socioeconomic groups might be at greater risk for epilepsy in the United States because they have higher incidences of seizure risk factors such as stroke [8,10], diabetes [4,11], and hypertension [4,10]. In addition to income and racial and ethnic disparities, regional disparities also influence the prevalence and incidence of epilepsy. Nationally, the prevalence of epilepsy is estimated to be 0.5 to 0.8% , with approximately 181,000 new cases being diagnosed each year [4]. However, the Midwest has the highest rate of epilepsy, with 7.9 cases per 1000 [4]. In comparison, the Northeast, South, and West register at 4.4, 3.7, and 4.6 cases per 1000, respectively. Locally, where the current study took place, there are 13,000–21,000 cases in Kansas and 3000–5000 in Sedgwick County [4]. The majority of previous literature has focused on the perspectives of medical care professionals, while few have considered the voices of the patients themselves [7,12–15]. The majority of studies that have focused on patientsÕ perspectives have been internationally based [16–21], although some exceptions exist [22–26]. The Brainstorm Series has produced three books [24–26] that provide personal accounts of American patientsÕ experiences with epilepsy, including The Brainstorms Woman: Epilepsy in Our Lives [24], which is a compilation of stories told by women with epilepsy. While these books provide insight into the individual and interpersonal aspects of seizures and epilepsy, they do not focus on these experiences from a racial and ethnic perspective or from
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the standpoint of how researchers and practitioners can use the information to generate studies or institute improved services, projects, and practices. Applied studies that investigate the perceptions and experiences of minority epilepsy patients and translate findings into meaningful action to reduce health disparities for epilepsy treatment are needed. At present, very little is known about the attitudes and behaviors of minorities with epilepsy [12], and even less is known about the factors that influence them. The information obtained from the current study is critical to fulfilling this gap in the literature and might better guide health researchers, physicians, and other health care professionals in their study and treatment of epilepsy among minority patients. Additionally, such findings can serve to guide initiatives such as those by the National Institute of Neurological Disorders and Stroke (Reducing Disparities in the Treatment of Epilepsy) [18], and others. The catchment area for the present study was the Midwest, specifically, Wichita, KS, USA. More Kansans live in Wichita than any other community in the state, and the city is one of the most racially and ethnically diverse [27]. Approximately 75% of the cityÕs population is non-Hispanic white (identical to 75% nationally), with 11% black or African-American (12% nationally) and 10% Hispanic or Latino (13% nationally) [27]. The median household income for Wichita is $39,939 (compared with $41,994 nationally). Overall, educational levels for the city are also comparable to national statistics; approximately 84% of the citizens are high school graduates or higher (compared with 80% nationally), and about 25% have bachelor degrees or higher (compared with 24% nationally) [27].
2. Methods The purpose of this qualitative study was to investigate by in-depth interviews the knowledge, attitudes, and beliefs associated with epilepsy among AfricanAmerican patients. Moreover, factors contributing to insufficient access to health care, inadequate help-seeking behaviors, and low adherence to treatment among African-American epilepsy patients were assessed. To this end, the following research questions were explored: (1) What are the perceived barriers or factors that are associated with obtaining adequate medical attention for epilepsy? (2) What factors influence their care-seeking behaviors? (3) What factors influence adherence to treatment? (4) What are their recommendations for potential solutions to the above problems? 2.1. Sample To serve as a catalyst to stimulate further research, this pilot study consisted of ethnographic interviews
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conducted by an African-American woman (A.M.P.) with 10 African-American female adults between 29 and 58 years of age. These cases were diagnosed with epilepsy at an epilepsy tertiary center (3/10) or at a local primary health care facility (7/10). Originally, participants were recruited from these two sites to maximize the number of African-American women participating in the study and to investigate whether there were any differences between them. There were no major differences among participants from the two sites. Two of the women in the sample were married at the time of the interviews, two were divorced, one was widowed, and the remaining five had never been married. Four of the women (4/10) had at least one child under the age of 18 residing in their homes. Half of the sample had governmental health insurance (Medicaid and/or Medicare), three had private health insurance, and two were uninsured. While four women indicated that they had an annual household income of $20,000 or less, one-half of the sample had incomes between $20,001 and $30,000, and one participant chose not to respond to the interviewerÕs question about household income. Three of the participants had full-time jobs, and seven were unemployed, although one of the unemployed participants was also a full-time college student. The age at epilepsy onset for these participants ranged from 26 to 49 years. Seizures were uncontrolled in six participants. No state, regional, or national data are available to compare the characteristics of this sample with those of other African-American women with epilepsy. 2.2. The interviews This study used qualitative methodology, which adds knowledge and understanding about a particular social phenomenon, and helps reveal social processes and events [28,29]. In-depth or extensive interviews are a widely accepted qualitative research method for determining the attitudes and motivations of people within systems [28,30]. Unstructured interviews are ideal for evaluating subjective motivations and insight into behavior and trends [29,30]. Sometimes specific motivations or barriers may be invisible to researchers or health care administrators because of educational, cultural, or socioeconomic differences between researchers and the providers or clients; however, unstructured interviews or focus groups are helpful in identifying them. Furthermore, barriers to health care delivery by providers, issues concerning health care access, and patient noncompliance problems oftentimes involve cultural and lifestyle factors that may be unique to the location, existing services available, and demographics of the population to be assessed. In-depth interviews can be useful in identifying these factors as well. Three of these interviews were conducted in person and seven were conducted by telephone. As a pilot study, these interviews
were sufficient to gather preliminary information to stimulate further studies. Approval for the study was obtained from the Human Subjects Committee at the University of Kansas School of Medicine–Wichita and the Via Christi Regional Medical Center institutional review board. 2.3. Interview guide The unstructured, extensive interviews were conducted with 10 African-American adult women with epilepsy, and lasted between 1 and 1.5 hours. Holstein and Gubrium suggest that questionnaires used in interviews should be used as guides, not scripts, for the interview process [30]. In other words, they could serve as advisories or conversational agendas rather than as procedural directives. Because this approach was used in the interviews for this study, the manner in which the interview questions unfolded varied from participant to participant, although all of the questions were addressed. The investigators for this study created the interview questions, and then tested the interview guide on two African-American patients with epilepsy (one from each site of recruitment). Some questions in the guide were eliminated or revised as a result of these interviews. A sample of the interview questions is given in Table 1. 2.4. Data analysis The interviews that were conducted in person were audio recorded and later transcribed, using pseudonyms to protect the identities of participants, as well as other individuals, agencies, and organizations mentioned in the interviews. Similar procedures occurred with the interviews that were conducted via telephone. However, these interviews were typed in real time during the interview rather than recorded. Qualitative data analysis is based on an inductive process of organizing the information or data collected into categories and identifying patterns and/or relationships among the categories that emerge from the data [30]. Therefore, after transcription the next step involved analyzing the data by reading through the transcripts and coding individual sentences and paragraphs. Although preconceived categories were established, categories and subheadings were revised according to the emergent codes and themes of the data. This method is recommended, as precoded or preestablished categories are inadequate for capturing the phenomena that may emerge from the open-ended interviewing format [29,31]. The Non-numerical Unstructured Data Indexing, Searching and Theorizing (NUD*IST) computer software program was instrumental in organizing the data. The data were then linked to the research questions and to insights provided in the literature.
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Table 1 Sample of interview questions Medical treatment
Social support
Other questions
1. When did you begin treatment for epilepsy? Describe your experience.
1. How supportive has your family been since youÕve had epilepsy? Your friends, if any?
2. Do you take your medication regularly? If so, what things help? If not, why not? What can be done to improve this? 3. Is money ever an issue in your getting the medication you need or the treatment you want? Why or why not? 4. What is the single most important obstacle in getting the care you need or the thing that keeps you from getting the medical treatment you want?
2. Did they influence your decision to seek treatment? Surgery? If so, how?
1. What is the greatest challenge youÕve faced in treating or managing your epilepsy condition? 2. What has been the greatest challenge in getting treatment?
3. What did your family and friends think when they first found out about your condition? What did they say? Do? 4. Have any of your relationships changed since you had epilepsy? Explain.
5. How do you compare the services you receive to what you believe others receive for epilepsy treatment?
5. What resources in the community, e.g., church, health centers, civic organizations, are helpful to you?
6. Are you able to read and understand the prescriptions and the directions for treatment that are given to you by your doctor? Pharmacist?
6. What has been the most useful thing in helping you deal with epilepsy?
3. Results Four major factors influenced access to care, helpseeking behaviors, and adherence to treatment among African-American epilepsy patients: (1) availability or amount of financial resources, (2) knowledge about epilepsy, (3) quality of patient–provider communication, and (4) amount of social support. 3.1. Financial resources Financial limitations were the single most important barrier in accessing epilepsy treatment and adhering to oneÕs medical treatment. Nearly all of the participants discussed some economic challenges that were related to their epilepsy treatment, which were related to their household income limitations. Participants reported that financial restrictions particularly impacted health care treatment and access in terms of transportation, ability to obtain medication, and adherence to treatment plans. Associated with low economic resources was the lack of transportation. According to Kansas law, individuals are restricted from driving for 6 months after a seizure [32]. While this legal restriction was an important barrier in accessing treatment, transportation restrictions were most often discussed in the context of financial restrictions and low social support. The participantsÕ dependence on others for transportation severely hindered their abilities to attend their appointments and to engage in unscheduled events. Phone interviews were scheduled with the majority of these participants because of their inability to obtain transportation to the
3. Do you experience any problems with transportation? Explain why or why not. 4. If you had the opportunity to say anything you wanted to a physician or other health care professional about improving care or services for epilepsy patients, what would you want them to know? To researchers? 5. What types of programs would be most helpful to you or to other AfricanAmericans in getting the help or treatment you or they need? 6. Do you know anyone else who has epilepsy? How did you become acquainted with them?
clinics for the interview sessions. Lack of transportation (although two participants had cars and were able to transport themselves) served as barrier beyond not having an automobile, as their inability to afford a car or regular taxi transportation, when needed, served as a significant barrier. In one interview, an individual could not stay until the end of the session since she had depended on a family member to drive her to the meeting. Although a follow-up phone interview was conducted with this participant, the situation highlighted the dependence of many of these individuals on others for basic activities. In addition to transportation problems, lack of adequate financial resources impacted participantsÕ abilities to obtain adequate medical attention. Not being able to afford medication, or to purchase all of their prescribed medication, was a common complaint mentioned among four women in the sample. As one of the uninsured patients described: After getting my first prescription, I went to the pharmacy to buy the medication. After filling the prescription, the pharmacist or pharmacy tech, IÕm not sure which one she was, said ‘‘that will be five-ninety-one [$5.91].’’ So, I gave her a ten dollar bill to cover the charge. But she said, ‘‘No, that will be $591.00.’’ I was really in shock when she said that, but I told her that I couldnÕt afford it. I just went home and cried.
Another patient initially described how she took her medication regularly: As the interview progressed, she explained that because her insurance did not cover the generic brand for one of her medications, and she could only get her medications when she was able to afford it, which was ‘‘not very often.’’ Several participants discussed how their lives had financially worsened after the onset of their condition.
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As one participant stated, ‘‘getting epilepsy has put me in poverty.’’ Based on these participantsÕ experiences, inadequate financial resources were associated with various challenges that included barriers associated with accessing treatment for epilepsy, maintaining appropriate help-seeking behaviors (attending appointments), and adhering to treatment plans. 3.2. Knowledge about epilepsy According to the findings, a general lack of knowledge about epilepsy exists in the African-American community. The participants shared accounts of misconceptions about their conditions. One participant discussed how her church members had rumored that she did not suffer from a neurological condition but rather from drug abuse. Although the participant claimed that she was not taking illegal drugs, her fellow church members assumed that illegal drug use caused her seizures. Furthermore, most of the participants described how they knew very little about epilepsy before the onset of this condition. Many reported spending substantial time educating family members, too. Two patients discussed how relationships had ended (one womanÕs husband had divorced her, and another had lost a long-time boyfriend) because of the condition. As one participant explained: I remember being in the grocery store with my boyfriend at the time, and he became very upset with me. I guess he was real jealous and all. Anyway, we went up to the counter and all of a sudden I went into one of my trance-like states, and he just went ballistic because he thought I was staring at the grocery clerk. He thought I was flirting with him. I tried to explain why I had done that [the partial miniseizure], but he [the ex-boyfriend] never believed it.
These situations draw attention to the stigma attached to epilepsy in the African-American community. In another example, when asked whether she knew of others with epilepsy, the participant described how she knew a man with this condition, yet she went on to describe how he ‘‘had those other seizures.’’ The interviewer noted that the participant stated ‘‘other’’ with disdain, and that the participant had wrinkled her face and waved her hand when mentioning it. When asked to explain the remark, the participant stated that the man was different from her in that she had minor seizures while ‘‘unlike me, he has those . . . those terrible seizures,’’ briefly demonstrating how he convulsed. The interviewer noted that the participant herself seemed to stigmatize the worse forms of epilepsy although she, too, had epilepsy. Half of the sample reported that they did not initially receive help for their epilepsy because they did not understand the condition, and the seizures were initially very rare. Furthermore, because others misunderstood the various sources of these conditions, which varied
(e.g., one woman thought that the seizures she initially experienced might have been related to a severe allergic reaction to something she ate, although this was later disproved), they did not seek help right away. She stated, ‘‘I didnÕt realize it was a seizure when it happened. I knew I felt funny and that something strange was happening to me. My mom knew it was a seizure and she thought I probably had a bad reaction to something I ate or something. We thought it would just go away; but it didnÕt.’’ Misinformation and lack of knowledge about epilepsy affected the help-seeking behaviors in some of these participants. 3.3. Patient–provider communication The third most commonly expressed factor that influenced these participantsÕ knowledge, attitudes, and beliefs about epilepsy comprised their relationships and interactions with their primary health care physicians. Among the participants that received tertiary care for epilepsy, higher satisfaction was expressed for the care they received. They also discussed being pleased with the medical care received from, and the relationships they had with, their primary care physicians. However, this was not the case among participants who received medical attention only from the local primary health care facility. Furthermore, only one of the seven participants who received care from the primary health care facility was aware that additional care was available through a tertiary epilepsy center in the city. Many patients reported that they did not feel comfortable asking their physicians about their conditions. As one participant stated about her doctor, ‘‘I wish she would just treat me like a human being; just slow down and talk to me and act like she cares and wants to answer my questions.’’ In general, participants expressed that they wanted a comfortable, ‘‘safe’’ place where they did not feel intimidated and felt they could ask questions. A few (3/10) stated that their physicians did not explain their epilepsy condition satisfactorily. Interestingly, some participants reported wanting more than just medical advice. Some wanted their doctors to tell them if they should seek psychological help, see a pastor or spiritual advisor, or consider alternative treatment or additional forms of treatment. One woman wondered if yoga would help her become less anxious, thereby reducing her seizures. A statement made by one patient summarized these desires, ‘‘I want them to treat the whole me.’’ 3.4. Social networks and social support Social networks and social support appeared to be associated with transportation, medication compliance, and views about surgery for the participants in this
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study. Those who expressed having adequate social support (6/10) also indicated having more transportation available than did the others. They also discussed having some, although limited, access to additional financial resources when needed; this was helpful in purchasing medications when they were unable to buy them. Positive perceived social support might also be associated with greater compliance to treatment. Among two of the six women who expressed having adequate social support, discussions took place about how their family (or a particular family member) helped them adhere to their medical regimen, encouraging them to take their medicine at the designated times, even as far as bringing a glass of water and the medication to them when it was time. Yet, in an opposing example, one participant explained: My husband left me many years ago. IÕm basically all alone now. My parents are no longer living and I have one brother, but I canÕt move to Texas with him. So, I mostly depend on my in-laws who live here to get me where I need to go. But they have things to do and I canÕt ask them all the time. TheyÕre struggling, too, so they canÕt help me get what medicine I need either. So, I do what I can do, like getting what I can get and going where I can go. ThatÕs about all I can do.
When pointedly asked whether she felt lonely, the same patient explained that she was indeed lonely, and she felt that her epilepsy condition was ‘‘a curse.’’ Furthermore, she was only one of two patients in the sample who did not attend church. This lack of overall support seemed to impact her ability to pay for her medications (no one could assist her), to adhere more closely to treatment (not being able to afford the medications she needed), and to demonstrate better help-seeking behaviors for her condition (not having reliable transportation to attend appointments). The six women who reported having strong social support also discussed how their families helped shape their attitudes about surgery. All patients were asked to discuss their views about having surgery when and if it should be recommended. Only among those patients who discussed having strong family support was family discussed as a central factor in shaping their views. In three of the cases, participants stated that they would have surgery if it was recommended and if their family supported this idea. As one participant mentioned, ‘‘I wouldnÕt mind going through with the surgery if it was recommended; but if my husband and my family didnÕt want me to do it, I donÕt know—I donÕt think I could do it.’’ One participant had already had surgery and her family had been supportive. In two other cases, the participantsÕ families were opposed to surgery although it had been recommended. Consequently, these participants believed they should not have surgery performed as their families were strongly opposed to it. Finally, when examining social support as represented through other venues (community organizations,
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churches, neighborhood associations), there was minimum support in their local communities and churches for their epilepsy conditions. For instance, among those who said they attended church on a regular basis (8/10), all but one reported that the churches were not a source of support or understanding for their epilepsy problem. Most stated that their epilepsy was not common knowledge in their churches; therefore this perceived lack of support might be due to their decisions to keep their epilepsy unknown, probably out of fear of being stigmatized as some expressed. Although many explained that their churches were generally a source of comfort, they wanted their churches to provide information to others about epilepsy, organize social support activities (e.g., support groups), and offer congregational and individual prayers for their conditions. Some participants discussed that when their churches focused on health issues or provided health fairs, hypertension and diabetes were usually emphasized. As stated by one participant, ‘‘If the church is suppose to be the backbone of our community, then why canÕt I go to them for this problem [referring to epilepsy] without them thinking that IÕm on drugs or something?’’
4. Discussion Inadequate access to epilepsy medical care, inadequate help-seeking behaviors for this condition, and low adherence to treatment among African-American epilepsy patients is better understood in the light of the findings provided in this study. Among the most pronounced factors that influence these are limited financial resources, poor knowledge of epilepsy, challenges in patient–provider communication, and low social support. Limited financial resources were a prominent theme that covered many factors including patientsÕ inability to pay for medications and/or medical appointments, as well as lack of transportation. Individuals mentioned inadequate financial means more frequently than other factors they found problematic in their ability to obtain adequate medical care and to adhere to their medical regimens. The Fisher et al. study revealed that approximately 25% of their sample of 1023 considered discrimination or public ridicule to be the worst thing about having epilepsy [7]. Misinformation about epilepsy or lack of knowledge about this condition certainly influenced when individuals sought care, their level of privacy about their condition, and how their family members and the general community reacted to their epilepsy condition. This lack of knowledge about epilepsy further stigmatized the condition in their community. Inadequate patient–provider communication was another theme that emerged from the interview data. The
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literature suggests doctor–patient relationships can be improved with cultural competency training or education [2,33,34]. Many participants believed their physicians needed to better communicate with them. It was not clear as to how much the patients contributed to this communication problem, but the need for improved interaction and communication was clear. The provision of culturally competent services holds promise in improving the access to and quality and utilization of medical care, while reducing disparities. The Institute of Medicine calls for changes in how health care providers approach their practice [1]. Cultural competence necessitates a greater understanding and awareness of differences in health values and beliefs of their low-income, minority patients. Understanding the complexity of life circumstances of this population may help with achieving the goal of delivering quality health services to patients with epilepsy. AdayÕs framework for studying vulnerable populations provides a frame of reference for understanding the relationship between socioeconomic factors and health and health care needs of vulnerable populations [35]. The underlying assumption of this model is that health is dependent not only on the medical care infrastructure, but also on social and economic forces; therefore, vulnerable groups may not have sufficient access to opportunities and resources to sufficiently maintain their health. The model maintains that a network of interdependence and social capital minimizes the risks of poor physical, mental, or social health. Vulnerable groups may have fewer social connections to assist with health needs. This study suggested that social support might be a factor in individuals seeking certain medical procedures (e.g., surgery). A recent study by Burneo et al. showed that African-Americans were less likely than non-Hispanic whites to undergo surgical treatment [36]. African-American women had a 60% less chance of undergoing surgery even after controlling for potential demographic, socioeconomic, medical insurance coverage, and clinical confounders [36]. The current study illustrated that lack of social support may partially explain why these women do not obtain surgical treatment. Further research on this relationship and other sociocultural factors is needed. Social support also affected whether individuals had additional support in purchasing medication, adhered to medical treatment, and had transportation when needed, supporting AdayÕs model. Although practically all of the participants perceived that they received little or no social support for their epilepsy through churches, community organizations, and agencies, the researchersÕ assessment of local resources revealed that several groups and resources exist in the city for people with epilepsy. The fact that participants were not aware of these resources indicated a need for coordinated services
and/or a need to increase awareness of these services among epilepsy patients in this community. While these findings might not be specific to AfricanAmerican women, this population was disproportionately poor [37] and might resultantly experience financial limitations and lack of knowledge about some health conditions (e.g., epilepsy). According to the Institute of Medicine, even when income, age, insurance status, and severity of conditions are comparable to those of their white counterparts, African-American patients are more likely to experience worse health outcomes and are less likely to receive routine medical procedures [38]. Thus, many of the findings in the current study (with the exception of social support) might be more common in African-Americans and other minority groups. While health disparities among minority epilepsy patients have been noted [4], little is known about culturally appropriate interventions to address these disparities. 4.1. Limitations Although many qualitative research methods use small sample sizes [28], there are still limitations in terms of generalizability for this study. Whereas many of the findings are most likely universal, the findings might not be generalizable to African-Americans in other regions. Additionally, African-Americans are not a monolithic group. Nonetheless, there is a dearth of literature on this population, and these findings are insightful in determining what can be done to better serve this group of epilepsy patients. Another limitation in this study relates to the method of data collection. As only three interviews were conducted in person and the others were phone interviews, there was some inconsistency. Initially, the data collection method that was planned for the study was focus groups. Difficulty was experienced in arranging focus groups among these patients because of barriers related to transportation and time conflicts. Modification of these plans resulted in three in-person interviews and seven phone interviews. Some nuances that were evident in the in-person interviews (e.g., facial expressions and body language) were lost in the phone interviews. Nonetheless, in both methods, rich, valuable information was obtained in these in-depth interviews. To date, this information has not been collected in other studies for this population. Another limitation in this study was that it did not examine specific types of epilepsy among patients. The only qualifying characteristics required were that the individuals were over the age of 18, were African-American, and had been diagnosed with epilepsy. Furthermore, the study did not establish a comparison group; therefore, it is difficult to assess whether the findings are specific to African-Americans. Finally, because the
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majority of participants in this study had low socioeconomic status, it is impossible to determine whether the results of this study were due to low income and/or race. Nonetheless, this study provides another milestone in the epilepsy literature by obtaining rich data from this targeted population through in-depth interviews and using these data to present potential ways to reduce health disparities in this population. 4.2. Implications Future studies should assess associated barriers to medical care access, appropriate help-seeking behaviors, and adherence to treatment among minority epilepsy patients to explore what could be done to reduce health disparities. Participants shared several ideas that could be considered for future projects or studies in this regard. 4.2.1. Education/awareness campaigns It is evident that epilepsy carries a stigma in the African-American community according to the findings from this study. The families discussed lack of knowledge among themselves, families, and the general community about epilepsy. The African-American community can greatly benefit from efforts to create awareness and knowledge about epilepsy. As earlier stated, misinformation and lack of knowledge about epilepsy affected the participantsÕ help-seeking behaviors. There is a strong need for education and awareness in this community. A previous study conducted in the United Kingdom stressed the importance of conducting further research into cultural attitudes toward epilepsy [39]. Lack of or limited knowledge about epilepsy has also been associated with more negative attitudes [40]. 4.2.2. Epilepsy education for primary care providers An important finding from this study was that patients who received tertiary treatment (specialized health care directed at a particular health problem) from the epilepsy center were pleased with the services, the interactions with physicians at that center, and their primary health care physicians, whereas patients who received care only from the primary health care facility (which provides treatment for general health conditions) were not as pleased with the treatment for their epilepsy conditions. This disparity might be partially explained by a high turnover rate among physicians at the primary care clinic over the past 5 years. Although the high turnover in the primary health care clinic likely impacted the quality of care the patients received and patient–provider interaction, further studies are needed to investigate this difference. Furthermore, only one patient in the primary health care facility was aware that a tertiary center for epilepsy existed. Others from that facility were not knowledgeable about epilepsy surgery and had been
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provided very little information about it. This echoed the results found in Swarztrauber and colleaguesÕ study which indicated that none of the six African-American participants had heard very much about epilepsy surgery [12]. Further studies are needed. 4.2.3. Improved patient–provider communication As the findings in this study suggested, the communication between providers and patients must be examined. Although it is highly unlikely that physicians will be able to fully render the time and attention the patients desire, alternative ideas need to be considered. There is a growing trend for cultural competency training among medical professionals [34]. Information from the target population, in this case African-American epilepsy patients, could be successfully integrated into cultural competency training. Focus groups conducted with 24 individuals with epilepsy demonstrated a strong need for culturally competent approaches in providing treatment to patients with epilepsy [12]. This study found that patients believed that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively [12]. Although patient factors such as compliance play a large role in disparities in medical care, physicians and other medical staff are often in the best position to impact these factors and to implement strategies that seek to ensure the highest quality of medical care [41]. 4.2.4. Church-based interventions Although participants indicated that their churches had not been supportive in addressing their epilepsy specifically, they expressed that they generally found comfort in their churches. Although the desire for enhanced church support might be common to all who suffer from epilepsy and other health problems, historically there has been a long tradition of reliance of African-Americans on their churches for moral, social, and political support [42,43]. Thus, there is room for researchers to capitalize on this strength by considering church-based health interventions for this group of patients. Several church-based health interventions have been successful at targeting other health issues for this population [44–47]. The same could be done with epilepsy. 4.2.5. Culturally specific social support groups Finally, one salient finding in this study was the lack of support felt by many participants. Only one of the 10 participants personally knew another individual affected by epilepsy. These individuals felt stigmatized, misunderstood, and isolated. Three of the participants mentioned that a support group in some form would be beneficial to other African-Americans suffering from epilepsy. One participant recommended that organizations consider a telephone social support system
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whereby patients could call and get support when they needed encouragement; this would also help those who have transportation challenges. Other racial and ethnic groups might find support groups very useful. For instance, similar groups could be established for Native American epilepsy patients. Support groups could be targeted at only epilepsy patients, patients and their families, and/or churches, and/or include the general community. In addition to having the benefit of providing social support, through enhanced understanding these interventions could potentially alleviate the stigma of epilepsy in this community.
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