Health Education Research Advance Access originally published online on August 8, 2006
Health Education Research 2007 22(6):757-769; doi:10.1093/her/cyl070
Asthma patient education opportunities in predominantly minority urban communities
1 Department of Family Medicine, University at Buffalo, The State University of New York, 462 Grider Street, ECMC, CC-120, Buffalo, NY 14215, USA
2 Department of Anthropology, University at Buffalo, The State University of New York, 380 MFAC, Buffalo, NY 14261, USA
3 Department of Family Medicine, University at Buffalo, The State University of New York, 501 Tenth Street, Niagara Falls Memorial Medical Center, Niagara Falls, NY 14301, USA
* Correspondence to: L. E. Zayas. E-mail: lzayas{at}buffalo.edu
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Disenfranchised ethnic minority communities in the urban United States experience a high burden of asthma. Conventional office-based patient education often is insufficient to promote proper asthma management and coping practices responsive to minority patients' environments. This paper explores existing and alternative asthma information and education sources in three urban minority communities in western New York State to help design other practical educational interventions. Four focus groups (n = 59) and four town hall meetings (n = 109) were conducted in one Hispanic and two black communities. Focus groups included adult asthmatics or caretakers of asthmatics, and town meetings were open to all residents. A critical theory perspective informed the study. Asthma information and education sources, perceptions of asthma and ways of coping were elicited through semi-structured interviews. Data analysis followed a theory-driven immersion–crystallization approach. Several asthma education and information resources from the health care system, media, public institutions and communities were identified. Intervention recommendations highlighted asthma workshops that recognize participants as teachers and learners, offer social support, promote advocacy, are culturally appropriate and community-based and include health care professionals. Community-based, group health education couched on people's experiences and societal conditions offers unique opportunities for patient asthma care empowerment in minority urban communities.
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Introduction |
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Asthma is a serious chronic disease that in 2002 afflicted almost 22 million adults (11% of the adult population) in the United States [1]. Moreover, asthma disproportionately affects racial or ethnic minority groups, particularly blacks and Hispanics. National asthma prevalence rates have been estimated at 9.3% among non-Hispanic blacks compared with 7.6% for non-Hispanic whites [2]. Although Hispanics have a lower prevalence (5.0%), they have higher rates of emergency care, urgent care doctor visits and activity limitations from asthma than non-Hispanic whites. In 2002, emergency care visits due to asthma were almost 12 and 23% higher among Hispanics and non-Hispanic blacks, respectively, than among non-Hispanic whites; urgent care visits were just >11 and 10% higher; and activity limitation was almost 17 and 16% higher [2]. Among US Hispanics, Puerto Ricans have the highest rates for asthma prevalence [3, 4] and mortality [5], particularly in the Northeast region, while asthma prevalence in Puerto Rico is higher (almost 20%) than in any other state or US territory [2].
Asthma prevalence rates are also high in the black and Hispanic communities of Buffalo and Niagara Falls, New York, where this study was conducted. Asthma prevalence in Buffalo's predominantly black East Side neighborhood was estimated in 2001 at 8% (Henry L. Taylor and Luther Robinson, unpublished report), and in the city's predominantly Puerto Rican West Side community it was estimated in 1994 at 15% among Hispanics, 11% among blacks age 13 years and older and 18% in all children age <13 years (Carlos R. Jaén unpublished report). A survey of 214 households in these two inner-city communities also found that asthma was reported by 41% of households [6]. Another survey of caregivers of children 4–13 years old in western New York school systems found the prevalence of asthma for that age group to be highest (20%) in Buffalo and 15% in Niagara Falls, with black and Hispanic children having two to five times the rates of their white peers [7]. Both cities are designated as ‘medically underserved areas’ for their shortage of health care professionals [8]. Opportunities for environmental interventions [6, 9–11] and for improving communication between patients and health care professionals [12] have been identified, and outreach programs that include patient education have been proposed to curb asthma disparities in inner-city neighborhoods [13]. Few, however, have been implemented and evaluated in this region [11].
Patient education is an essential component of proper asthma management [14], though knowledge acquisition per se does not always translate into preventive or prescribed behaviors that could help improve health outcomes [15]. Conventional asthma education typically covers asthma pathophysiology, triggers and medication use. Limited resources and time, competing practice demands and business pressures, however, may hinder the scope and impact of office-based patient education. Personal and societal factors also may challenge implementation of self-management recommendations. Asthma is a complex problem that is affected by individual and family behaviors, health policy, the health care system, schools, housing and the environment [16] among other social, economic and cultural factors. Poor patient understanding of asthma management combined with inadequate physician monitoring may contribute to disparities in asthma care, particularly in disenfranchised populations that experience health inequities [17]. Hence, an expert panel [14] recommended that clinicians establish a ‘partnership’ with patients and their families by adopting proactive and sensitive measures to teach asthma self-management more effectively in the office setting and to encourage adherence to prescribed treatment. The panel also underscored the benefit of formal asthma education programs taught by qualified educators to supplement patient education provided in the office [14].
In light of the burden of asthma in urban ethnic minority communities of western New York, local grassroots and health care organizations set out to investigate how people are being informed and educated about this illness and its management, and how could they be trained to better understand and manage it. The goal was to identify promising interventions by exploring existing and alternative approaches to asthma education through qualitative inquiry, with input from affected communities. Applied researchers have employed similar approaches to identify asthma care and educational needs in ethic minority groups [16, 18]. A key premise is that the target communities must be included as ‘coproducers’ of the intervention through consultation with their residents. The principal research question was ‘What educational interventions exist and can be designed to facilitate improvement in asthma self-management skills among patients in disenfranchised and underserved urban minority communities with high asthma prevalence?’
A ‘critical theory’ framework based on the works of Jürgen Habermas and applied to health issues [19] informed this exploration in the context of the political economy of asthma (care) inequities [13, 17, 20]. This framework is concerned with questioning the underpinnings of systems of domination in society, including how ideologies may legitimize and reproduce social inequities. In analyzing forms of knowledge and concepts of rationality, Habermas [21] contrasts ‘instrumental rationality’ and ‘communicative rationality’. The former refers to a calculus of means to given (often material) ends based on subject–object relations determined by social system integration. The latter refers to background assumptions about a commonly shared world grounded on subject–subject relations determined by symbolic communicative practice. Expert instrumental discourse tends to uncritically discount the experiential knowledge and ways of (disempowered) lay populations expressed in symbolically mediated discourse. This critical perspective may help to overcome the reductionism of conventional patient health education by considering the experiences, perceptions and concerns of affected people in relation to a broader set of social dynamics and contexts that may impact on health and health care [22].
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Methods |
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Four focus groups and four town hall meetings were conducted with residents of one predominantly Hispanic and two predominantly black communities in western New York. Two focus groups and two town hall meetings were held in Buffalo's black East Side neighborhood. Another focus group and town hall meeting were held in a black Niagara Falls neighborhood, and the fourth focus group and town hall meeting were held in Buffalo's Hispanic West Side neighborhood. Focus groups were used for ‘obtaining general background information about a topic of interest ... learning how respondents talk about the phenomenon ... [and] stimulating new ideas and creative concepts’ [23] through small group discussion. Town hall meetings were designed to elicit popular knowledge and concerns about asthma and ideas for health education interventions from the public. This large group discussion format also has proven useful in ‘identifying issues, exchanging information and considering creative solutions to [health-related] problems’ [24].
A not-for-profit community health education organization serving minority groups in the region recruited all the participants via postings in the communities, presentations at community centers and word of mouth. Focus groups included only adult community residents who had a self-reported asthma diagnosis or who were caretakers of a household member with asthma. (A prescription for asthma medication was used to corroborate diagnosis.) Three town hall meetings were open to residents regardless of asthma diagnosis or any other criteria. A fourth town hall meeting was conducted in Buffalo with a purposefully selected group of high school students 15–16 years old and mostly black to account also for asthma information sources recognized by youth. Some of this group identified themselves as having asthma or having relatives or friends with asthma. A total of 168 local residents participated in the study: 59 in the focus groups and 109 in the town meetings. A University Institutional Review Board approved the study.
Trained moderators from each community facilitated the meetings. A semi-structured interview schedule was used to obtain information on asthma perceptions, ways of coping and information or education sources (Table I). Focus group participants discussed 10 open-ended questions and town meeting participants addressed eight of the same 10 questions. A medical anthropologist with experience in asthma research constructed the questions. All the meetings lasted 
90 min and were audio recorded and transcribed for content analysis. The Hispanic meetings were conducted in both Spanish and English, and the transcripts were translated to English. Focus group participants completed a short exit questionnaire consisting of mostly demographic questions and received a $20 grocery store voucher for participating. Town meeting participants signed an attendance sheet but did not complete a questionnaire and were not offered an incentive. Focus group exit questionnaire data were entered into a database to assess demographics, asthma severity and some health care utilization characteristics. The characteristics of the focus group participants appear in Table II.
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Two researchers trained in qualitative analyses evaluated the data following a theory-driven, immersion–crystallization approach [25]. First, they reviewed each transcript separately from a critical theory perspective to identify statements that reflected perceptions of asthma, management and coping strategies and ways of learning about asthma. Preliminary findings were differentiated by meeting format (focus group versus town meeting), by age group (adult versus adolescent town meetings) and by race or ethnicity (black versus Hispanic) because of differences in group dynamic and composition. Afterward, the analysts compared their individual findings and developed an inventory of asthma perceptions, treatments, coping practices and education sources. Depictions of asthma perceptions, coping and treatments were summarized, whereas identified sources of asthma information and education were itemized and categorized, all by consensus. Disagreements were resolved by presenting supportive evidence. The analysts also reviewed specific audio-recorded segments to reflect on the significance of expressive nuances (e.g. empathy, irony, etc.) in specific statements and to check for accuracy of transcription. To enhance the trustworthiness of the analysis, a search for overlooked and conflicting evidence in the transcripts was performed [26]. Questionnaire data were used only for descriptive statistics.
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Results |
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Standard and alternative asthma information and education sources that the participants identified are presented in Table III under four general categories: health care system sources, media communications, public health and education institutions and community and individual initiatives. Some of these sources are conventional, particularly the ones from the professional health care sector, whereas others are unconventional, especially the community and individual initiatives. The findings are presented in aggregate form because of overlap in the participants' responses and in view of the communities' proximity and similar socioeconomic characteristics. Key ethnic variations still are discernible. Above all, the main finding and recommendation were conducting asthma group discussion sessions or workshops in the communities to address a wide range of illness concerns as described below. Many participants with asthma (or who cared for a household member with asthma) revealed uncertainties about the nature and management of this chronic illness, as most demonstrated basic knowledge and an eagerness to learn more. Table IV summarizes the participants' perceptions about asthma, ways of coping and treatments, some of which are referenced in the following narrative of findings.
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Health care system asthma information sources
When asked about asthma learning sources (Table I, C), the participants mostly cited health care professionals, such as primary care doctors, nurses or other specialists as their main or ideal source. Respondents identified these professionals' verbal and written descriptions of asthma and its symptoms, triggers, medications and management plans, as well as pamphlets, videos and audiotapes available at medical offices. Pamphlets were deemed helpful, particularly Spanish versions for Hispanic patients, though many participants believed that such educational instruments were insufficient and most preferred personal communication and interaction with a doctor. Having a clinic in the community staffed with Spanish-speaking health care professionals was an invaluable resource for the Hispanic participants. A few respondents mentioned ‘asthma [education] classes with a nurse’, ‘hospital ... workshops on many diseases’ and audio or video resources available at the clinic. Other asthma information sources cited included ‘health fairs’ organized by health care insurers, pharmacists and the ‘health tips machine’ in drugstores.
Poor communication or relationship with doctors and inadequate access to medical care were described as major problems in obtaining comprehensive information about asthma. Many participants thought doctors do not have or cannot find enough time to explain asthma and its management in ways that patients can understand. Many of them also claimed doctors simply discuss the diagnosis, medication instructions, avoidance of certain triggers and when to seek emergency care. These opinions are consistent with the tendency of several affected participants to define asthma only in symptomatic terms, to associate ‘chronic’ with illness severity or to be uncertain about the physician-prescribed asthma management plan (Table IV), as well as with the rate of dissatisfaction with asthma care and of emergency department visits for asthma (Table II). As one black participant admitted, ‘I've learned more about asthma in the emergency room than from my doctor!’ Another observation by an elderly black participant epitomized the health care access and doctor–patient communication challenges in this study population:
... I've heard everybody talk about so many different medicines ... I've never heard of [them]. The only medicine I've ever heard of was what they gave me at the hospital ... I went in the hospital last week and they gave me this ... all my life I wondered why I breathed like this ... I usually just call them ‘shortness of breath’ attacks ... but ... they're asthma attacks. Nobody never took me to no doctor for it. [My doctor] at Veteran's Hospital ... told me to take 2 puffs of this, and I said ‘how do you know when it's out?’ He then said, ‘when none don't come out!’ ...
Participants made some recommendations for improving health care access and asthma care in the office setting, such as expanding clinic hours, empowering patients to ask questions and listening more to their opinions, dedicating sufficient time and effort for patient education, making timely referrals and cultural competency training. For example, one black respondent noted, ‘In the clinic ... they have fitness classes, Lamaze classes ... why don't they have a "let's come out tonight" [program for] asthma?’ Another participant believed that ‘[physicians] are treating the symptoms and not necessarily the problem’. According to her, ‘we just walk away with [medications] ... until the next time ... and we grow more dependent’. Hispanic participants expressed concern about obtaining the proper medications, learning how to use them correctly and being able to contact their doctor when necessary. Several participants also said patients need to follow their doctor's instructions and take their medicines.
Media communications on asthma topics
Participants in all the groups, particularly youth, recognized the value of the media in disseminating information and educating people about asthma. Participants with asthma or who cared for children with asthma, for example, noted that they have learned about medications or about possible environmental triggers from pharmaceutical advertisements and health news on television or radio. Others mentioned having tuned in to health programming featuring a special segment on asthma. Print media, such as newspapers, magazines and books found in bookstores, also were cited as asthma information sources. Some participants stated they have found useful asthma information on Internet sites.
Other respondents, including town hall meeting participants not afflicted with asthma, also suggested that these and other communication media afforded additional opportunities for educating people about asthma, including those who do not have the disease. In fact, several participants believed that most people in their community do not know much about asthma or how serious it is. As one respondent observed, ‘... if you don't have asthma, you don't know anybody with it, you just don't care about it ... is human nature!’ Another one summarized the public's response as:
People don't take asthma serious ... when you hear that somebody has asthma you're like ‘oh God, everybody got it’, or ‘just take the medicine’, or ‘oh, you're exaggerating’, or ‘oh, he'll grow out of it’ ... they kind of push it to the side ...
Many participants recommended raising public awareness to promote a healthier environment and greater understanding and support of the health care needs of individuals with asthma, for example, by avoiding smoking cigarettes near them. Some suggested posting flyers throughout the community to increase the public's knowledge on asthma. ‘Billboards’ advertising asthma treatments and where to obtain information, health care and support for asthma, such as a ‘toll-free asthma [phone] hotline’, also were recognized. Other participants believed that ‘national media campaigns like those on HIV-AIDS or cancer’, ‘family friendly TV shows’ showcasing ‘famous people with asthma like [the athlete] Jackie Joyner-Kersey’, or ‘rap songs’ targeting youth could raise the public's awareness. Hispanic participants also specified Spanish TV and radio programs on asthma to educate their community.
Public health/educational institutions
Several participants revealed that they have obtained information about asthma at public health centers, such as the county health department, or through non-government organizations, such as the regional chapter of the American Lung Association. Some participants also suggested that the public health department could do ‘outreach’ in the communities, including setting up ‘asthma information centers’ or kiosks to educate local residents.
Other participants also procured asthma information at public and college libraries or in district schools. The community college health science department and library were identified as resources. Some respondents also mentioned reading about asthma in medical encyclopedias at the public library. As one remarked:
... there are some books in the library where you actually see what really happens to the airways ... how they close up ... the whole process ... the medication you take to keep the airways open ... the more you read the more you learn ...
Participants in all the groups also cited existing and original asthma information or education sources in the schools, such as ‘activities to raise asthma awareness’, ‘information packages’, ‘workshops’ and other asthma education ‘school programs’ for parents, students and teachers offered by ‘school nurses’, ‘health teachers’ or ‘social workers’. According to one parent:
My child's school sends home information packages and has children sign up for information concerning asthma ... but a lot of kids aren't taking advantage because they say it's boring ...
Community/individual initiatives
Participants also described a variety of what one termed as ‘non-traditional programs’, specifically in response to the question regarding how else could people get information about asthma (Table I, Q. 9). These were largely new untapped venues that could be developed in the community mostly through the initiative of local residents, such as ‘group discussion meetings’, ‘workshops’ or ‘seminars’. Hispanic and black participants alike suggested conducting ‘group meetings’ or ‘talleres’ (workshops) also ‘in the church’ to talk about asthma, with or without health professional participation. Some proposed sharing information on asthma at neighborhood ‘block clubs’ or ‘tenant meetings’ and inviting ‘guest speakers’. Some also identified ‘support groups for people with asthma’. Others argued for efforts to ‘reach people where they are’, such as going ‘door-to-door’ or disseminating asthma information at ‘supermarkets’ and ‘community centers’ or even ‘through word of mouth’. A student participant suggested distributing asthma information ‘at clubs where kids go’, and an adult participant proposed, ‘If they're at a boys or girls club, have a workshop’. Some Hispanics considered that ‘[asthma] information booths at Hispanic festivals’ would be useful. Some black participants also deemed instructive if people conducted ‘research’ on asthma in their community, such as ‘surveys’ in order to disseminate their findings to local resident.
Other participants remarked that lay individuals who have knowledge about asthma and experience with its management could educate others. Adults with asthma and caretakers of kin with asthma were recognized as potential ‘teachers’ and thus as a resource to others about asthma. For example, one respondent recalled, ‘I first learned [about asthma] from my grandmother when I was very young’, and another stated, ‘ ... I know about asthma through [a close friend] that has asthma’. Some suggested that parents of asthmatic children could educate neighbors or school staff about the illness. Lastly, some respondents acknowledged that people also learn ‘through experience’, by teaching themselves to identify and avoid places and things in the environment that could trigger attacks, or experimenting with alternative treatments.
Main recommendation: community asthma workshops
Among all the suggestions for advancing asthma education in the community, however, the idea cited most frequently by the focus group and town hall meeting participants was some variant on the meetings themselves. As one participant replied in response to the question about what could be done to improve asthma education in their community (Table I, Q. 10): ‘group discussion sessions like these’. This educational approach—hereafter referred to as Community Asthma Workshops—was generally proposed as being complementary to office-based asthma education and inclusive of health care professionals and advocates. Most participants felt that the primary, but not exclusive, source of asthma education should be clinicians. As one participant stated, ‘you can ask your doctor, but he's only going to tell you so much ...’ Several people observed that difficulty accessing health care and poor rapport with doctors warranted other asthma education interventions.
The basis for this workshop recommendation derives from the content and the dynamic of the group interviews. Although the discussion on perceptions and coping (Table I, A–B) does not directly address the principal research question, it reflects the participants' gross experiential knowledge concerning asthma and generates the raw material for asthma education. Some focus group participants expressed adequate knowledge about asthma and its management, but others expressed limited understanding and skills. Hence, the participation of a health care professional was deemed valuable to reinforce proper care practices and to clarify misunderstanding. Overall, the participants were intrigued with the array of asthma descriptions, triggers, treatments, coping styles and information sources discussed. They offered vivid descriptions of dealing with asthma in everyday life, and cited perceptions of socioeconomic or environmental injustices bearing on their health that revealed an experiential wisdom (Table IV).
Interestingly, some participants believed that a health educator would be speaking on asthma at the focus group and town meeting sessions, despite there being no mention of this in recruitment invitations for the study. Review of the transcripts suggested the study participants indeed learned a great deal about asthma, although from one another, particularly in the focus groups. For example, one participant learned from another about the possibility of getting skin tested for allergies. Another participant who forgets to ask her doctor questions was advised to write down the questions. One participant reminded others that they should consult with their doctors before using non-prescribed treatments. Another taught relaxation strategies to prevent stress-induced attacks. Most learned about different triggers, new medications or where to find more information. As one participant put it, ‘I've learned much more about asthma tonight [in the focus group] than I've learned from any doctor ... this is as much knowledge as I've gotten’. Hence, the research medium developed into the educational intervention of choice, except with the adolescent group. While some adults suggested doing workshops or other interventions with youth at schools and clubs, data from the students' town meeting pointed toward school-based programs and youth-sensitive media interventions.
The group interview dynamic underscored by the participants' interaction also provided the impetus for the proposed asthma workshops. In recommending group discussions on asthma in community settings as the ideal intervention, the participants chose to replicate the facilitated dialogical interaction, which was observed as essentially entailing five components: (i) learning from one another, (ii) support group formation, (iii) issue advocacy development, (iv) cultural/lay communication and (v) community setting. In sharing their experiences and lay knowledge, they acted as learners as well as teachers. In learning about their common challenges and afflictions, many demonstrated empathy and a desire to help themselves as well as others who struggle with asthma. As one participant expressed, ‘I didn't realize there were so many tenants ... in ill health. Now when I pass you by I won't just say "hi", I'll ask, "how are you doing?"’ Some participants also expressed a sense of advocacy in wanting to do something to promote asthma awareness or better asthma care in their communities. Communication in lay language also facilitated mutual understanding. Lastly, the community setting eased access and contextualized their participation. Together, these components create a synergy that delivers a powerful and comprehensive set of lessons about the human experience of asthma.
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Discussion |
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This study explored standard and alternative asthma education and information sources in three disenfranchised, medically underserved, minority urban communities in western New York in order to promote educational interventions that can help lessen adverse health outcomes due to asthma. Various information sources from private, public, professional and informal sectors were identified. Health care professional advice in the medical office was the customary and expected source of asthma education. However, challenges in obtaining proper health care and in everyday life prompted most participants to recommend a different approach and setting complementary to office-based education. Asthma group discussion sessions or workshops led by local residents in the community and that involve a health care professional were considered potentially beneficial for improving illness knowledge, management and coping skills in these communities. Linguistic appropriateness was a distinctive and fundamental requirement in the Hispanic community. It is important to consider the illness experiences and perspectives of patient populations, embedded in cultural contexts and social structures, when developing and implementing patient education interventions, particularly in disenfranchised communities with high asthma prevalence.
Conventional office-based patient health education tends to be reductionist, rationalistic and individualistic [22, 27]. It concentrates on the biomedical aspects of a disease as determined by professionals in position of power in clinical settings, and presents the individual patient with instructions based on a scientific disease management rationale that often underestimates social, cultural, political, economic and environmental factors that impact on patients' behavior, health care and health outcomes. The experience of illness, however, is a social as well as a biological phenomenon that is ‘not reducible to fixed diagnostic categories’ [28]. Cognitive behavioral models consider the role of social norms in shaping attitudes and behavior, but ‘the main focus remains on the individual who can, if properly educated, overcome social and cultural pressures and act rationally’ [27]. An instrumental notion of rationality is one-dimensional. A study that elicited the ‘explanatory model’ of asthma among mothers of children with asthma in the inner city and that raised concerns about the ethnocentric tendency of conventional health education approaches found that ‘parents are making rational decisions within their own framework’ [29].
Community asthma workshops could overcome certain limitations of conventional patient education approaches by couching learning on the patients' life experiences and sociocultural context. These workshops could supplement office-based education by addressing the illness-coping aspects of the disease management plan. Coping pertains to how people respond or adjust to living with an illness in their social environment, whereas management specifically addresses disease monitoring and treatment to control relapse. Some psychologists have defined coping as ‘context-specific behavioral and emotional processes in which an individual appraises, encounters and recovers from contact with a stressor, whether a minor daily hassle or a major life change’ [30]. Poor coping skills can interfere with disease management; hence, patient education ‘should not only focus on the disease and the treatment, but particularly on the relation between the patient, his immediate environment, and society’ [31]. Research on the social impact of asthma found that people ‘asked for more counseling services, by professionals as well as by self-help groups, to air their anxieties, confusion and grievances, to come to terms with their predicament, and to develop inner resources to overcome the problems they faced’ [32]. The suggested intervention would combine these and other key aspects of patient education.
The National Asthma Education and Prevention Program Expert Panel [14] recommended formal ‘small-group’ asthma education programs as a supplement to office-based education delivered by clinicians. The small-group format may be more practical than the large group because it maximizes interaction among the participants and can better focus on each participant's needs. It has been argued that town hall meetings ‘may not be the best vehicle for providing health education to a lower socioeconomic stratum’ [33], although certainly it could be useful for informing and mobilizing communities regarding a health problem. Small-group asthma education programs for adults have been found to be beneficial [16, 34–36]. One study compared individual and small-group education taught by a nurse educator with a mixed patient population in a clinical setting and found both programs to be helpful [36]. Another study compared two distinct small-group education interventions with white parents of asthmatic children in rural Canada and found that the ‘empowering’ approach (active learners) facilitated by a nurse generated more knowledge and better coping skills than the ‘traditional’ didactic approach (passive learners) [34]. Another study with primarily urban African–American parents or caregivers of asthmatic children found that community-based and peer-led asthma classes improved self-management skills, knowledge and quality of life [35].
The suggested asthma workshops differ from other group education approaches in that the adult participants, including the health care professional or educator, act as teachers as well as learners through dialogue with reference to life experiences. A trained community moderator could facilitate the workshops in order to reproduce the discursive interaction of the focus group, and to allow the professional to step back and appreciate the dialogue and culture before joining in. Support group development is encouraged. Asthma lessons may be couched in the political economy of health (care) inequities. Community health advocacy, such as patients acting as lay health workers or health care lobbyist, may further patient and community empowerment. Key components of this ‘critical pedagogy’ are dialogue, empowerment and social justice. A critical pedagogy or empowerment education that ‘involves people in groups to identify their problems, to critically assess social and historical roots of problems, to envision a healthier society and to develop strategies to overcome obstacles in achieving their goals’ [37, 38] is particularly fitting for underserved disenfranchised populations and for promoting structural change.
The proposed asthma workshops would be community based and community driven in partnership with health care, academic or civic institutions in the mold of a community-based participatory research collaborative [39]. This workshop program could have a flexible format, and its duration would be at the discretion of stakeholders. Ideally, the workshop series would be institutionalized in the community, and spin off a variety of local initiatives. It would consist of a series of periodic meetings and activities focusing on (specific or diverse) asthma-related topics of interest to the participants, such as the chronic nature of asthma, indoor triggers, air pollution, self-management, obtaining health care, health insurance, doctor–patient relationship, medication use and side effects, non-prescribed treatments, coping, school/workplace asthma, social support, spirituality, community awareness, comorbidities, quality of life, etc. The workshop series may integrate different educational strategies, such as demonstrations, media, fieldtrips, theater, guest speakers or research, among others, as listed in Table III. Sessions may be conveniently located in community centers, schools, churches or people's homes. One community-based educational program that was based on a partnership between health care and neighborhood organizations and that harnessed informal networks and social forces within the community has reduced the rates of acute care visits for asthma among low-income African–American children [40].
This study has some limitations. Because the participants volunteered to take part in group interviews, the workshop recommendation may reflect opinions from people who are less satisfied with office-based asthma education or who can interact well in group settings. Also, the group interview formats could have influenced the participants' preference for a group education intervention. It has been noted that ‘focus groups are not designed to serve as a support group or psychotherapy session, although participation can often be therapeutic or educational’ [41]. The study's main finding, however, was entirely unanticipated. The moderators did not inquire about the educational value of group interviews or any specific educational strategy except in probing the participants' responses. It could be argued that some respondents might not have envisioned such intervention without participating in the study. Other limitations are that some participants did not respond to every question, and that the study does not adequately examine educational sources among urban minority youth.
Community-based asthma workshops could have significant complementary value for patients with access to health care but who are dissatisfied with conventional asthma education or simply want more information, and particularly for those with inadequate health care access living in poor neighborhoods with high asthma prevalence. Community-Oriented Primary Care advocates the expansion of the physician's role from a focus on the patient who walks into the medical office to a concern about the health care needs of the community in which that patient lives [42]. The recommended health education approach likewise transports the health care professional into the community setting to explore the impact of asthma and to meet the needs of affected residents in their element and at their level of understanding. Evidently, the challenges and opportunities to enhance asthma patient education and care befit not simply individual health professionals and patients, but also health care and social systems.
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Conflict of interest statement |
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None declared.
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Acknowledgements |
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The authors wish to thank Andrew Danzo and Renee Cadzow for their editorial and technical assistance with this manuscript and the study participants who taught us so much about asthma. We also acknowledge Kaleida Health, the Buffalo Urban League and the Western New York Minority Asthma Coalition for their leadership and support of this study and Lasting Education for Women, Adults and Children Associates of Western New York for project management. This study was funded by a New York State Department of Health grant to Kaleida Health of Buffalo.
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References |
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Received on June 6, 2005; accepted on June 19, 2006
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