importance of obtaining information from assessment of community service providers for a disease prevention program, The
Gesler, Wilbert M
Objectives: This paper demonstrates the importance of gathering information from community service providers as part of a community assessment focused on preventing a specific disease. This study is part of a project to prevent diabetes among low income African Americans, Latinos, and European Americans. Methods: Twelve community service providers from 11 social and health service institutions that represented various community groups were interviewed using a semi-structured questionnaire. Results: Results showed a wide range of perceptions about the prevalence and seriousness of diabetes in their community and the adequacy of current services. Interviews led to changes in the survey for the target population.
Conclusions: We conclude that a successful diabetes prevention intervention program requires educating service providers, improving and coordinating diabetes-related services, and selecting appropriate intervention sites. This community service provider assessment can be applied to the prevention of a wide range of chronic diseases and utilized in a variety of places.
KEY WORDS: Community Assessment; Community Disease Prevention; Community Service Providers; Disease Prevention; Diabetes.
The concept of the community as client is well represented in the nursing literature (Rodgers, 1984; Anderson & McFarlane, 1988; Bradley, 1990). It is recognized that community nurses have a responsibility to the community as a whole (Clemen-Stone, Eigsti, & McGuire, 1991). Community nurses understand the social patterns that contribute to or detract from the overall state of health within a place. This idea is captured by the phrase community competence that Goeppinger, Lassiter, and Wilcox (1982) describe as “[the] health capabilities and potentials of a community and its constituent groups” (pp. 464-67).
In order to understand the context in which health care is delivered within the client community, a community assessment is required (Goeppinger & Schuster, 1988). Most community assessments describe communities in very general terms; for example, they gather statistics on mortality and morbidity rates, health services available, and population characteristics such as income and ethnicity. Rarely are community assessments focused on a specific disease or the treatment or prevention of a disease. The purpose of this report is to demonstrate the importance of one aspect of a community assessment, gathering information on diabetes knowledge and beliefs and diabetes-related services from community service providers, as part of a diabetes prevention project.
The information gathered from community service providers is an essential component in developing an intervention to prevent the onset of diabetes among community residents. For a prevention program to be successful, it is important to understand (a) the extent of service providers’ knowledge and beliefs about diabetes because they are looked to for information by lay people; (b) what diabetes-related services are available and how well these services are coordinated among agencies; and (c) what sites service providers indicate would be good places for an intervention program. Although the results of this study pertain to the prevention of a specific disease in a specific place, the methods used can be applied to a wide range of diseases and places.
In order to provide a context for the study, background information is provided on the need for type 2 diabetes prevention and the Prevention of Diabetes (POD) project of which this report is a part. Then the methods used to select and interview community service providers are described. Next, the study results are presented and discussed. In conclusion, the importance of obtaining information from community service providers in disease prevention programs is reiterated.
THE NEED FOR TYPE 2 DIABETES PREVENTION
Type 2 diabetes is a highly prevalent and costly disease among low income African Americans, European Americans, and Latinos who live in rural areas and small towns in the southeastern United States (US). Type 2 diabetes is a chronic disease that has either been diagnosed or remains undiagnosed in as many as 16 million persons in the US. People with diabetes are prone to acute and long-term complications that result in hospitalizations, disability, and death. Diabetes prevalence is increasing, and it affects minority groups such as African Americans, Latinos, Native Americans, and Asians disproportionately (Harris, et al., 1998; Cowie & Eberholt, Eds., 1998). The prevalence of diabetes is significantly greater in the southeastern US, with a morbidity rate of 35.3 per 1,000 persons. Other sections of the country average at a rate of 25.5 per 1,000 persons (Centers for Disease Control, 2001). Genetic susceptibility appears essential to the development of diabetes, but one or more environmental factors are required to “trigger” the disease process. Risk factors for Type 2 diabetes include demographic factors (race/ethnicity, age, sex), genetic factors, obesity, lifestyle factors (physical inactivity, diet, acculturation and urbanization, socioeconomic status) and metabolic factors (e.g., impaired glucose tolerance) (American Diabetes Association, 2001).
A recent study showed that a group that followed an intensive lifestyle change program of diet and exercise had better results in preventing the onset of Type 2 diabetes than other groups treated with medications and placebo (Gorman, 2001). Until recently, attention was focused on treating diabetes or preventing complications from arising. However, because the personal and societal cost of complications of diabetes is high and escalating, the emphasis is shifting to approaches to prevent or delay the expression of diabetes. The research reported here joins the emerging emphasis on the prevention of diabetes.
THE PREVENTION OF DIABETICS PROJECT
The Prevention of Diabetes (POD) project is designed to ascertain the beliefs and knowledge of rural-dwelling low income Latinos, African Americans, and European Americans about diabetes, and where they obtain this information in their community. The project is conducted by a multidisciplinary team with expertise in nursing, anthropology, sociology, and geography. It is located in a rural southeastern community called Millvale (the names of communities and community service agencies discussed in this paper have been changed to protect the privacy of the participants and the community). Specifically, the POD project will produce information that is needed to develop an intervention aimed at preventing Type 2 diabetes, and to guide the identification of community sites for prevention programs where the potential for success is highest.
The first phase of the POD project sought to understand the context or environment pertaining to diabetes within Millvale, a factor that could be termed diabetes community competence (Bradley, 1990). What people know about diabetes and where they obtain this information is related to the history, geography, economy, and culture of the community. To better understand this context of diabetes knowledge, the POD project conducted a community assessment; the goal was to understand community competence as it related to diabetes. Prior to the investigation reported in this presentation, study investigators familiarized themselves with Millvale by (a) studying its history with a focus on the local economy (Cravey, 1997), (b) mapping out where various ethnic groups were concentrated, and (c) driving and walking through the town, noting potential prevention sites such as health clinics, local stores, churches, schools, and workplaces.
STUDYING THE DIABETES KNOWLEDGE OF SERVICE PROVIDERS
This report focuses on the community service provider aspect of the community assessment. The term “service provider” is used in a broad sense to cover a range of providers of both social services and health services. They represent a major source of information and referral for people on a wide variety of topics, including disease prevention and treatment, and thus they constitute an important component of the “knowledge environment” within which the residents interact.
The service provider interviews focused on perceptions about the severity of the diabetes problem in Millvale, what specific diabetes care was provided in the town, and what services residents had to use outside the town. We were interested in the service providers’ perceptions about the adequacy of services, what groups were underserved, and what were the priorities for care in Millvale. It was important to understand (a) what services already existed that directly or indirectly dealt with diabetes, (b) the salient characteristics of these services, (c) the characteristics of populations served and where they reside, (d) how the service organizations work, and (e) linkages among service organizations. Finally, the extent of the individual service provider’s knowledge about diabetes-their familiarity with the disease, their knowledge and beliefs of its causes, its treatments, and its complications-was of interest.
Study Site
Millvale, the largest town in Center County, had a population of approximately 7,000 in 2000 (United States Census, 2001), at the time of the study. It is a multi-ethnic community that is approximately 20 percent African American, 40 percent Latino, and 40 percent European American. Over the last decade there has been a dramatic change in the ethnic composition of the area due to a very large influx of Latinos that is part of a statewide phenomenon (Cravey, 1997). Millvale lies within a highly productive agricultural area. Industry is also very important, with concentrations in poultry processing and textile manufacturing. Latinos in particular have been attracted to the jobs provided by these industries. Millvale has one hospital, Millvale Memorial, and approximately 60 medical health care providers, ranging from dentists to optometrists to general practice physicians. Several of the general and family practice doctors provide services through one primary care clinic.
Selecting the Sample
A purposive sample design was used to select service providers for interviews. Organizations such as the county health department, health care facilities, and major providers of other health services as well as social services were the most obvious potential sources of diabetes care and information. Personnel working with these organizations were interviewed, and were asked to recommend other service providers to contact. The list of potential participants was terminated when no new suggestions were being made. The sampling process resulted in a list of 13 organizations. The investigators attempted to contact and identify for interview key personnel within the organizations. Two service providers contacted did not grant interviews. The final sample consisted of 12 participants from 11 organizations (two came from the county health department).
Interviews
A semi-structured interview guide was developed to ensure that all participants were asked the same set of questions. The interview guide was pre-tested with four service providers from different ethnic backgrounds who were not from Center County. The interview guide was amended based on the results of this pre-test. The final interview guide consisted of the following sections: (a) overview of the service providers’ backgrounds, (b) general services provided: type and scope; (c) perspectives on diabetes in the community; and (d) knowledge and beliefs about diabetes.
Interviews were conducted by pairs of investigators, usually in the office of the participant, or place of his/her choice. The research was approved by the University Institutional Review Board for the protection of human subjects and the participants gave informed consent (signed) before the interview. One member of the pair asked questions while the other took detailed notes on the responses. In cases in which it was deemed necessary (e.g., a participant’s accent was hard to follow), the interview was tape recorded with the participant’s permission. Interviews lasted from 60 to 90 minutes. Immediately following the interview, the investigator team went over the notes for clarity and completeness.
Analysis
Notes and transcribed tapes were typed up for the 12 interviews. There were approximately 15 hours of taped material. Data on service provider characteristics were tabulated. All the key ideas expressed by participants in response to a specific question were written down along-side each other. Then, for each question, a narrative was developed that focused on major themes (ideas expressed by several participants) as well as on commonalties or dissimilarities among the key ideas. The analysis was intended to capture the consensus if one emerged on an issue, or the divergence of opinion that was reflected in the interviews.
AN ASSESSMENT OF DIABETES-RELATED RESOURCES
Overview of the Service Providers Surveyed
The service providers interviewed came from a variety of organizations (Table 1). When asked about their community, some providers defined their community as a specific church congregation or ethnic group, while others addressed larger, more heterogeneous groups such as all residents of Millvale or Center County. The participants included a mix in terms of both gender and ethnicity: five women and seven men; and four African Americans, three Latinos, and four European Americans (one person’s ethnicity was not given). The mean age of the participants was 45.5 years (with a range from 31 to 70). Educational attainment ranged from completed high school to a nursing diploma/degree, to an MPH and an M.D., indicating that the knowledge base of the participants varied widely. The mean length of residence of participants in Millvale was 15.5 years (with a range from less than a year to 33 years), and in Center County it was 17.4 years (with a range from less than a year to 70 years). Although their length of residence in the area varied considerably, overall, participants had many years of experience within the community and most of their time in the county was spent in Millvale.
General Services Provided: Type and Scope
The services provided by the organizations surveyed vary in type and scope. Millvale Family Practice treats substantial numbers of patients with diabetes. No other service provides direct diabetes care. Latino Health provides education about diabetes as one of its programs. The Center County Health Department provides diabetes health education; two diabetes projects are on hold due to budget concerns. Most service providers mentioned that they collaborate with or refer people with diabetes to health care agencies such as Millvale Memorial or the Health Department. Yet, overall, they had little knowledge of the diabetes services provided by other agencies in the community. In some cases, services were provided that had an effect on diabetes prevention or treatment. For example, African American Community Services (AFAM) has a nutrition and aging program, as well as a weight reduction program, and participated in a three-year diabetes self-management program to teach people to use blood glucose monitors. One church teaches a healthier lifestyle to its youth. The Cooperative Extension Program, working under Center County Services, teaches nutrition in a kitchen on the premises.
The 11 organizations in the community assessment attempt to serve the needs of community groups that vary considerably in terms of population characteristics and geographic extent. The three churches minister to people of their own faith for the most part: one Protestant church focuses primarily on African Americans, another Protestant church on Latinos, and a Catholic church on Latinos, although the latter also has a substantial European American congregation. These churches draw their members mostly from Millvale, but some attend from its rural environs and surrounding towns. Center County Services has changed over the last several years from providing services mainly to African Americans to serving mostly Latinos. AFAM’s community consists mainly of African Americans from the poorest sections of Millvale. Latino Health’s Lay Health Advisors work with Latinos through three churches and also in industries such as Parker’s Poultry Plant. In the Millvale Health Department approximately 30 to 45 people a day receive care; the patients are mostly young Latinas who reside in Center County. African American and European American patients, who are primarily women, are decreasing. This is at least partly due to a reported aversion to listening to Spanish in waiting rooms. Six of the 11 organizations, including Latino Aid, Latino Health, Quiet Home, and the three churches, have no particular criteria for people seeking their services. The other five make an effort to support those most in need. Millvale Family Practice has an indigent patient population and charges fees on a sliding scale; Factory Help and AFAM focus on low income people; the Health Department treats mainly low income and Medicaid patients; and Center County Services offers a variety of programs for those who lack services.
DIABETICS KNOWLEDGE OF SERVICE PROVIDERS
Perceptions of Diabetes in the Community
Service providers had a very wide range of perceptions about the seriousness of the diabetes problem in the Millvale area (Table 2). At one extreme, participants saw diabetes as very serious, especially for minority groups. In contrast, one provider did not see diabetes as a problem, and another participant could not say if it was a problem or not. Furthermore, although diabetes has several serious complications, such as retinopathy and amputation of limbs, more than half the participants did not know of any of these complications.
Participants had limited knowledge of diabetes services offered by other agencies, organizations, or churches in the Millvale area. Local medical facilities and practitioners were mentioned, including Millvale Memorial Hospital, Millvale Family Practice, the Health Department, the Dialysis Center, and home health care services. Four other organizations were also mentioned, although they do not provide direct diabetes care; these included AFAM, the Cooperative Extension Service, the Council on Aging, and Women and Infant Care (WIC). Two providers said they did not know of any diabetes services in the area. A third of the service providers did not know if there were diabetes services for which residents had to go outside of Millvale. Other participants said people had to go up to 35 miles away to obtain dialysis, wound care, care for severe diabetes, nutritional counseling, and services for pregnant women.
Perceptions of how adequate diabetes services currently were in the Millvale area also varied a great deal. One participant said that services were “pretty good” and was not aware of any particular barriers to care. In contrast, another provider felt that there was a need for major improvement and cited use of Spanish by many patients, lack of transportation, and distrust of some physicians as specific barriers to adequate treatment. Another participant said that services were good but only if you could get to them. Some participants perceived that the key problem was a lack of preventative diabetes services.
Service providers felt that certain groups in the Millvale area were not having their diabetes needs met as well as others. The most common response had to do with the recent influx of Latinos into the community and the need for more service-oriented programs; this response was shared both by organizations that dealt directly with Latinos and those that did not. Furthermore, the demographic profile of Latinos was perceived to be changing rapidly from one that consisted mainly of single, young men to families that included women, children, and older adults. Some providers stated specific difficulties associated with the Latino population, including lack of trust in the health care system, different ideas about disease causation and treatment, and the language barrier. One provider was eloquent in relating a story about the reasons that African Americans were at high risk from diabetes and also why they were underserved. African Americans had problems with hereditary diabetes and lifestyles conducive to having the disease.
One provider expressed the concern that adolescent diabetes was increasing. Teen-age needs were not being met because attention in diabetes treatment traditionally focused on older adults. Latino adolescents in particular were at risk as they lived between two worlds, traditional Latin American society and modern US society. Several other groups whose needs were not being met included those with low incomes, lack of health insurance, recent legal and illegal immigrants, those with transportation problems, those with language problems, and those living in rural isolation.
There was a lack of consensus about what community priorities for diabetes services should be. A wide range of suggestions were made, including involving patients in their own treatment, a clinic to treat wounds that resulted from diabetes, educational services, transportation to care, a family practitioner who focused on diabetes, language translation for Latinos, and diagnostic screening. There was some evidence of frictions among service providers on the issue of priorities. One participant expressed the view that the medical establishment would prioritize any disease such as diabetes only when it thought it was costing the health system too much. Another participant said that the Health Department personnel in Millvale and Darlington (the county seat of Center County) had different visions and this made it difficult to make compromises over scarce resources.
Knowledge of and Beliefs about Diabetes
Service providers had varying experiences with diabetes, which reflected their contact with the disease and the purpose of the organization they represented. Experience with diabetes ranged from almost none to a great deal, depending in part on work experiences and in part on contact with family or friends with diabetes. The physician at Millvale Family Practice was very familiar with the disease through his work. One provider had worked in a diabetes clinic for six years, taken a three-day course on the disease, and currently provides patient education on diabetes. Another provider had taken a diabetes-training course. Three of the participants spoke about family histories of diabetes, had relatives with the disease, or knew of relatives who had had limbs amputated. Familiarity with people who had diabetes did not necessarily lead to a better grasp of the disease, however. For example, one community leader reported that family members had lost limbs and had vision problems, but reported he was not very well informed about the disease itself.
Most participants showed a basic understanding of what was causing the recent increase in diabetes in the US. The following factors were mentioned: poor diet such as too much junk food, too many sweets, lack of exercise, lack of knowledge or education, and increased weight. Respondents mentioned these same factors as causes of diabetes and important in its prevention, and added two more factors, genetic disposition and alcoholism. Two participants cited lack of knowledge as contributing to increased diabetes and also said they did not know what caused it or how it could be prevented. Another provider did not know what caused diabetes but said it could be prevented by proper diet and exercise. A few specific suggestions for prevention are worth mentioning because they deviated from standard responses. One provider said that taking vitamins and using certain alternative medicines might help and another advocated programs for personal change based on families and support groups. In summary, results showed that, apart from two or three providers, most knew little about diabetes causation or prevention.
There was wide variation in knowledge about how diabetes could be treated. Five of the 12 participants knew of no treatments. One said the best treatment was education and another suggested home remedies, using one’s faith, self-suggestion, and life-style changes. Four of the more medically knowledgeable participants (two doctors, a nurse, and an MPH) listed medical treatments such as pills, insulin injections, and dialysis, as well as changes in diet and exercise.
Finally, service providers had an interesting range of ideas about what was the worst thing about having diabetes: cannot eat chocolate, keeping to a strict diet, coming to terms with lifestyle changes, fainting, coma, blindness, amputations, psychological stress, fear of the unknown, shortening one’s life, and death.
DISCUSSION OF RESULTS
The 12 service providers interviewed for this study represent most of the organizations that provide services to fairly large groups of people in the Millvale area. They typify the range of services that are available in a place of this size. They also show variety along several dimensions, including (a) type of service, (b) characteristics of populations served, (c) geographic extent of target populations, and (d) degree of involvement with diabetes prevention and treatment. Some of the organizations, such as the Health Department, Millvalle Memorial Hospital, Millvale Family Practice, and Center County Services are similar to those found in many or most counties. Other providers attempt to meet special needs. Most providers were aware of the existence of several other providers, but had a limited idea of what these others were doing. The overall lack of co-ordination of services and knowledge of services provided by other agencies was particularly striking. The implication is that there may be unnecessary competition, overlap, and gaps in services. This was evident in diabetes care provision, which was very fragmented. Programs geared to prevention were very spotty. A program to prevent or treat a very serious chronic disease that has to depend on an occasional grant from a foundation or an interested church leader has little chance of sustained success.
Although diabetes is known to be increasing in the US, and is especially a problem for the minority groups that make up around 60 percent of the Millvale population, some providers were not aware that there was a local problem. In addition, more than half the participants did not know or make any mention of the potentially devastating consequences of diabetes. Taken together, these responses indicate a serious lack of diabetes knowledge among service providers. Responses to questions about what diabetes services were provided either within or outside Millvale strengthened the impression of both service fragmentation and limited knowledge of what was available for those who had this serious chronic illness.
There were mixed perceptions about the adequacy of diabetes services. Some providers saw that there had been changes in need in recent years, in particular for the burgeoning Latino population. There were also clear expressions by a few providers that the African American and Latino minorities were underserved. The needs of several other deprived populations, including adolescents, were also mentioned. We took the service providers’ concerns about adolescents seriously and altered our survey of Millvale residents in the POD project to include younger persons. These results indicate that diabetes services are not being distributed equally and that providers are struggling because there is no planning framework or community coalition to address common problems.
Some participants had more direct contact than others with people with diabetes, and their knowledge of the specifics of its causes and treatments also varied. Overall, most providers knew at least the basic causes, why the disease was increasing in the US, and what could be done to prevent it. The roles of diet and exercise were generally known. Most participants, however, said very little about the pathophysiology of diabetes (how the disease affects the body). The area in which lack of knowledge was surprisingly deficient was treatment; almost half the participants had no answer, and most other replies were weak.
THE APPLICATION OF COMMUNITY ASSESSMENT IN COMMUNITY-BASED PROJECTS
The ultimate goal of the POD project is to develop a diabetes prevention intervention tailored to Millvale’s low income African Americans, Latinos, and European Americans. The results of this community assessment support the development of this intervention in at least four ways. First, the results show that the intervention should begin with education for service providers, whether the organizations they represent provide direct diabetes services or not. Second, a diabetes prevention intervention must recognize that Millvale’s services are fragmented, reducing diabetes-related community competence. It will be necessary to ensure that all organizations that can aid in the intervention are fully informed about it, and provided an opportunity to be part of the planning and implementation of the intervention. Third, survey results provide some indication of what is known about diabetes in the community, and what is not. Although findings are based on only a small sample of relatively well informed people, we might expect the community at large to know that diet and exercise are important, but to know very little about the pathophysiology of the disease or available treatments for it. This information can be used to help focus the content of an intervention. Fourth, survey results provided valuable suggestions about possible sites for a diabetes intervention. As examples, the Center County Services complex would probably be an important site, as would cooperative poultry plants and some churches.
The targeted community assessment approach detailed here differs from most other assessments found in the community health literature. Typically, a community assessment focuses on gathering statistical data on such items as morbidity and mortality rates, hospital beds available, censuses of population characteristics, and so on. The POD project has found this type of assessment to be valuable. In this presentation, however, the focus is on community competence related to a specific, very serious, chronic illness. The scope of this component of community assessment is not broad, but it is deep. It is a necessary component of a successful prevention program and it could be applied to an intervention involving any chronic disease.
ACKNOWLEDGEMENT: This paper is based on a project titled “Type 2 Diabetes: Ethnic Variation in Knowledge and Beliefs,” funded by NINR, Grant # 04552-01A2.
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Wilbert M. Gesler, PhD
Molly Dougherty, PhD, RN
Thomas A. Arcury, PhD
Anne H. Skelly, PhD, RN, CS, ANP Sally Nash, PhD
Wilbert M. Gesler, PhD, Professor, Department of Geography, University of North Carolina, Chapel Hill; Molly Dougherty, PhD, RN, Professor, School of Nursing, University of North Carolina, Chapel Hill; Thomas A. Arcury, PhD, Research Professor and Research Director, Department of Family and Community Medicine, Wake Forest University School of Medicine; Anne H. Skelly, PhD, RN, CS, ANP, Associate Professor, School of Nursing, University of North Carolina, Chapel Hill; and Sally Nash, PhD, Department of Geography, University of North Carolina, Chapel Hill.
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