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Women’s Health Issues 15 (2005) 204–208

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EDITORIAL

NEEDED: A MORE INCLUSIVE RESEARCH PARADIGMTO LEARN ABOUT THE HEALTH NEEDS

OF RURAL WOMEN

Angeline Bushy, PhD, RN, FAAN�

University of Central Florida, School of Nursing, Daytona Beach, Florida

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ural America’s population is highly diverse— geo-raphically, culturally, economically, politically,nd in their health status. Data on the health of ruralesidents in the United States are sparse, conflicting,nd often nonexistent. According to the Departmentf Health and Human Services (DHHS), there haseen some improvement in collecting and reportingealth data for predominate minorities, but that isot the case for most of the underrepresented andconomically disadvantaged subgroups found inhe more remote regions of our nation. Too often,indings from larger studies are generalized to ruralubgroups without taking into consideration theirarticular cultural preferences and health beliefs. Asn example, empirically based information abouthe self care behaviors of Puerto Ricans with aiagnosis of diabetes may not be applicable to otherHispanic” groups such as Mexican Americanomen who are migrant farm workers. Information

btained from a study focusing on women in anmish community in Pennsylvania may be different

n the women in a Mennonite or Hutterite commu-ity in a north central state. The list of critical health

ssues in women is the same whether they be ruralr urban: cardiovascular disease, diabetes, cancers,isky lifestyle behaviors, mental illness, substancebuse, domestic violence, HIV/AIDS, and intergen-rational poverty. However, comprehensive data toupport culturally appropriate “evidence-based”

* Correspondence to: Angeline Bushy, University of Central Flor-da, School of Nursing, 1200 International Speedway Blvd, Daytonaeach, FL 32114.

tE-mail: abushy@pegasus.cc.ucf.edu.

opyright © 2005 by the Jacobs Institute of Women’s Health.ublished by Elsevier Inc.

ractice guidelines are incomplete for most of theseonditions in general and for rural women in par-icular (Bushy, 2002; Gamm, Hutchison, Dabney, &orsey 2003).To address the information deficit, some policy

evelopers and academicians advocate extrapolatingural-specific information from large national dataets. This approach is problematic because of sparseopulation density and a low volume of cases for aarticular health condition in a given rural geographicegion. To eliminate disparities for rural women, theres an urgent need for culturally valid health informa-ion from various subgroups of women living iniverse rural environments. Such information is nec-ssary to identify strengths and risk factors, developreventive strategies, apply treatment interventions,romote health education, and establish policy. Cul-

ural validity implies eliciting data from the perspec-ive of a population of interest, as opposed to inferringnformation obtained from a large sample. This is notealistic in a sparsely populated community. Lack ofmpirical studies focusing on diverse rural women isdouble-edged sword. On the one hand, accurate and

omplete information remains an elusive goal forefining the particular needs of a highly diverse ruralopulation. Conversely, for researchers the choices arenlimited when it comes to identifying health-related

opics that focus on diverse rural subgroups.

ultural and Linguistic Competence

ultural and linguistic competence are current buzzords associated with rapidly increasing diversity in

he US population. Multiculturalism and diversity will

1049-3867/05 $-See front matter.doi:10.1016/j.whi.2005.07.002

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A. Bushy / Women’s Health Issues 15 (2005) 204–208 205

scalate in future decades, thereby impacting healthare providers and institutions from the smallest ruralown to large urban centers. The changing complexionf American society implies that providers will en-ounter and must learn to manage complex variationsn worldviews, communication styles, and attitudesbout health and health care providers. Culturallyompetent providers and researchers are essential toevelop and render services that are appropriate,cceptable, and fit with preferences of diverse clientystems (patients and their families). Decades of liter-ture from the social sciences have documented prob-ematic situations that can arise when different cul-ures encounter each other. More recently in the healthiterature, strategies are described to bridge commu-ication barriers and prevent misunderstandings thattem from socioeconomic, cultural and linguistic dif-erences. (Kaiser Foundation, 2003; Leininger, 1991;ffice of Minority Health [OMH], 2004).What are cultural and linguistic competence andhat does it mean for rendering and measuring health

are to rural women? Cultural competence encompassesoth interpersonal and organizational interventionshat seek to facilitate achievement of clinical andealth-related goals when those differences come intolay. Linguistic competence includes knowledge of ver-al and nonverbal communication patterns with thessociated cultural nuances. In other words, culturallyompetent providers and researchers have the abilityo integrate disparate communication styles in therovision and evaluation of services (OMH, 2004).Numerous attempts have been undertaken to quan-

ify cultural and linguistic competence, including de-ining and refining terms, developing model pro-rams, setting standards of practice, identifyingerformance measures, and establishing evaluativeriteria. However, as the amount of literature on theopic proliferates, questions remain. What do culturalnd linguistic competence actually accomplish? Doultural and linguistic competence make a differenceo rural clients and their expectations of health care?

hat is the impact of culturally competent providersn health outcomes? What are the most effectivetrategies to develop cultural competence in careivers? Are there differences in definitions of culturalnd linguistic competence between and among disci-lines or between and among subgroups of women inural areas? A new paradigm for investigative ap-roaches is needed to respond to opportunities andhallenges associated with learning about ruralomen and to effectively answer these culturally

aden questions.

mplementing a more inclusive research paradigmultural and linguistic competence is necessary toitigate long-standing research methodologies that

ave excluded minority participation. An inclusionary r

aradigm values reciprocity evidenced by mutualenefit, such as fiscal and other resources to studyarticipants as well as researchers (Minkler, Black-ell, & Thompson 2003; Nielsen-Bohlman, Panzer, &indig 2004; Agency for Healthcare Research anduality [AHRQ], 2003). Participatory action researchodels are inclusionary in that they promote collab-

ration between and among disparate stakeholders.ltimately, participatory research should enable di-erse subgroups to work together and to strengthenhe entire community’s decision-making capacity. Foresearchers, inclusionary models allow individuals toearn about the cultural and linguistic nuances,trengths, needs, and circumstances impacting thosehey seek to assist. For the community, a participatory

odel affords various subgroups the opportunity toearn about the limitations and benefits of research.

hen participants, in this case women in rural com-unities, are involved in the generation and use of

nowledge, they are empowered to act collectivelynd make informed decisions. In other words, a coa-ition of stakeholders is prepared to implement andustain changes that can ultimately improve the healthf the entire community.At the individual, organizational, and research lev-

ls, cultural and linguistic competence is a develop-ental process. The researcher–community partner-

ng process does not happen overnight. It takes timend varies from project to project. Inclusive modelsandate identifying and working with natural, infor-al, and formal networks; for example, neighbor-

oods, civic organizations, advocacy associations, lo-al merchants, faith-based organizations, spiritualealers as well as ethnic and public interest mediautlets. Partnering efforts can be enhanced by theolicies of local health care organization that supportubgroups becoming integral members of participa-ory action research.

Community-based participatory research (CBPR)as been gaining widespread acceptance as a more

nclusive research paradigm. This model could beseful to learn about the particular health care needsnd preferences of rural women, who are a widelyiverse group. Collaborative participatory activities, crit-

cal elements of CBPR, are consistent with the goals ofesults-oriented philanthropic and government fund-ng entities. Over the years both entities have, unfor-unately, been overshadowed by traditional researchocusing on socioeconomically deprived communities.hallenges in implementing the CBRP model relate touilding a partnership of diverse stakeholders, devel-ping community capacity that facilitates decisionaking, needing an extended and flexible timeframe

o carry out the project, evolving budget priorities,nd designing evaluation approaches to accurately

eflect beliefs and preferences of various subgroups

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A. Bushy / Women’s Health Issues 15 (2005) 204–208206

elative to the community as a whole (Minkler et al.,003; Nielsen-Bohlman et al., 2004; AHRQ, 2003).Methodologies within CBPR encourage subjects to

ecome invested in the project by participating in allspects of the research process. There is often arevailing mistrust regarding research among minor-

ties who view both researchers and the process ofesearch through a prism of victimization and fear.ome rural groups mistrust researchers based on annfortunate history of their negative encounters with

he health care system. Such perceptions in part orig-nated with reports of unethical investigations such ashe Tuskegee study. African American prisoners werenknowingly infected with syphilis and left untreated

or the condition. In small towns, the rumor mill mayerve to perpetuate fear and suspicion about the truentent of health-related research or biomedical inves-igation (OMH, 2004).

Some individuals and subgroups are reluctant toarticipate in inclusionary models because previous

nvestigation results have not been shared with themor have they seen benefits from those studies. Certainative American tribes and African American andatino groups have been studied intensely by univer-ity researchers for decades. Rarely have these highlyulnerable groups had decision-making capacity thatas comparable to the researchers who were studying

hem. Mistrust may be exacerbated if researchersperceived by the locals to be outsiders) have notought community involvement until after a projectas funded. Consequently, the methodologies androtocols have not adequately, or accurately, reflected

he various cultural or political nuances among sub-roups within that community (Bushy, 2002).In terms of dissemination of findings these, too,

ften are misunderstood or not useful to the commu-ity. Researchers seem to focus more on ‘negative’indings and rarely report on the inherent strengthsnd resiliency of a community. Subjects, in turn,erceive such reports as fostering racial superiority orefectiveness between groups (Bushy, 2002). Gener-lly in the past, research outcomes have had minimalffect on improving the health status of the commu-ity at large or subgroups within it. Only occasionaltudies offered economic benefits in terms of employ-ent and reciprocity for underrepresented groups, in

articular rural minority women. Learning aboutommunity subgroups can be facilitated with researchethodologies that are developed and refined with

heir input and feedback. Findings from an inclusivearticipatory study, in turn, are more likely to havealidity and relevance for a targeted group and reflectultural competence on the part of the researcherAHRQ, 2003).

National health surveys usually include few ruralubjects in sampling methodologies. This approach

akes it nearly impossible to draw conclusions on t

isease epidemiology for rural women in general andubgroups in particular. Further, such sampling ap-roaches do not make a study cross-cultural. Becauseamples in rural studies tend to be comparativelymall, because of low population density and volumesf cases, it is critical that various subgroups provideerspective relative to the problem under consider-tion. Cultural concepts must infuse the entire processf planning, theory development, instrumentation,nalysis, and interpretation of research findings tonsure cross-cultural validity and reliability. Inclusivearticipatory action research models are designed too this! The good news is that a number of researchersre discovering that traditional research methodolo-ies are not necessarily appropriate to study culturallyiverse rural groups. Unfortunately, there is dearth of

iterature on the methodologic considerations of con-ucting participatory research, in particular with ruralomen (OMH, 2004; Kaiser Foundation, 2003).Recently, policies at the federal, state, and local

evels have mandated the need to collect racial andthnic data relative to health issues in the rural con-ext. This trend has encouraged granting entities as

ell as professional organizations to include the ruralnd cultural perspective in research agendas. Al-hough this is a significant first step, it is imperativehat these entities also recognize the challenges ineveloping, implementing, and determining the out-omes of participatory action research focusing onomen in the numerous and diverse rural subgroups.Although research has focused broadly on similar-

ties and differences between rural and urban women,ittle has been done to evaluate the particular healtheliefs of those in various community subgroups.ural-based primary care providers have a critical role

n providing information to researchers about theelief systems of underrepresented groups in theirractice. Subsequently, investigators can disseminate

hat information to policy developers who could usehat information to support culturally and linguisti-ally appropriate health-related initiatives focusing onural populations, specifically women.

Participatory action research is the new kid on thelock. Consequently, challenges remain that can im-ede these kinds of investigations. For example, nu-erous perceptions of race and what race meansithin cultural, socioeconomic, political, and biologi-

al contexts can precipitate conflicts in planning atudy and analyzing data. For rural-focused studies,here are issues associated with numerous, and some-imes conflicting, definitions of rural. Budgets also

ay need some modification as the project unfolds.lexible budgeting models may be required to supportxtended front-end time involved in developing com-unity–researcher relationships and building com-unity capacity before the project can become opera-

ional. Increased success has been demonstrated with

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A. Bushy / Women’s Health Issues 15 (2005) 204–208 207

rojects having access to flexible discretionary fundshat allow for emerging and unanticipated needsdentified by participating stakeholders in the studyOMH, 2004). There can also be challenges associated

ith faculty who are unfamiliar with participatorynvestigative methodologies. Lack of knowledgebout these approaches prevails among financial sup-orters of such projects. Many grant reviewers andontract officers do not have adequate background inhis kind of research. To develop a more inclusivearadigm for rural women, there is an urgent need to

nform various entities about participatory actionethodologies in general, and the particular consid-

rations of the rural environment.A few comments are in order regarding measur-

ng consumer satisfaction. Surveys (i.e., pencil andaper, computer-generated questionnaires, tele-hone or face-to-face interviews) often are used tobtain information from a population of interest.ultural and linguistic perspectives of various sub-roups must be considered when designing a sur-ey tool to measure patient satisfaction, prioritizeervices, elicit opinions, or determine trends. Forxample, patient satisfaction includes more than di-tary practices, pastoral care preferences, and painanagement. Cultural factors influence one’s defi-

ition of health, illness, self-care practices, care-eeking behaviors, and manner of interacting with aealth care provider. These dimensions should be

aken into consideration when deciding the mostffective format to obtain the information as well ashe most appropriate wording of the various items.tems on written surveys often are constructed inhe form of a Likert scale, to which respondents’ rateevel of agreement–for example, “satisfactory,” “un-atisfactory,” “acceptable,” or “unacceptable.” Sur-ey developers must take into consideration thebility of the study population to understand whats stated. With the graying of America, one mustlso consider declining vision and hearing abilities.ont size on documents may be too small to be ready many adults; others might not able to hear ornderstand an interviewer’s questions. An increas-

ng number of US residents use English as theirecond language. Many cannot understand or readnglish. Further, some never learned to read in theirative language; thus, translated materials are notseful. For these reasons, data elicited by surveys inoth written and oral format may not be valid oreliable. Developing a linguistically and culturallyompetent survey requires input from women inarious subgroups to ensure that the proper ques-ions are asked and in the correct manner (e.g.,ppropriate words, tone of voice, cultural/regional

dioms, demeanor, etc.).

ualitative versus quantitative approachesultural, racial, economic, and social factors interact

n complex ways to affect health behaviors and theealth status of individuals, families, and commu-ities. Both qualitative and quantitative methodsre needed to obtain a complete, valid, and holisticerspective from a population of interest (Leininger,991). The interaction of complex cultural and bio-ogical effects are often reported as “life expect-ncy,” “mortality,” “morbidity,” or “etiology” of aarticular disease. On the other hand, quality-of-lifeeasures often are characterized as “socioeconomic

tatus,” “standard of living,” “job satisfaction,”lifestyle,” or, perhaps, “quality of housing.” Com-ined approaches yield a more comprehensivenapshot of health within a particular subgroup.pidemiologic data and quality-of-life indicators

poverty level, education, gender, race, place ofesidence) provide “hard” data about the health of aural community as a whole. Qualitative indicators,n the other hand, could lead to insights about aural subgroup such as health beliefs of a religiousect that opposes immunizations for children, socialehaviors of seasonal farm workers in which severalew cases of HIV recently have been diagnosed, orcreening practices of middle-aged African Ameri-an women who have a higher mortality rate fromreast cancer.In conclusion, participatory action research models

re inclusionary, mandating collaboration betweennd among disparate stakeholders in all aspects of theesearch process. This model can be of particularmportance to learn about rural women who often areescribed as not having a voice. Inclusiveness implieseveloping and implementing processes to increase

unding for programs designed for and by women inural communities in collaboration with researchers.nvestigators need to learn how to work with theommunity to find out what locals believe their prob-ems to be. Then, as partners, the researcher andtakeholders are in a better position to secure theecessary financial and technical support to solve theoncerns of rural communities in general, and ruralomen subgroups in particular.

EFERENCESgency for Healthcare Research and Quality (AHRQ). (2003). Therole of community-based participatory research: Creating part-nerships, improving health. (AHRQ Publication No. 03-0037).Rockville MD: AHRQ. Available on line. Available: http://www.ahrq.gov/research. Accessed June 24, 2005.

ushy, A. (2002). Rural minority health resource book. (Project sup-ported by the Office of Rural Health Policy, Health ResourcesServices Administration, & National Rural Health Association).Kansas City, MO: National Rural Health Association.

amm, L., Hutchison, L., Dabney, B., & Dorsey, A. (2003). Rural

healthy people 2010: A companion document to Health People 2010

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(Vols. I–III). College Station, TX: Texas A & M University. Available:www.srph.tamushsc.edu/rhhrc. Accessed June 24, 2005.

aiser Foundation. (2003). Key facts: Race, ethnicity & medical care.Available: http://www.kff.org. Accessed June 24, 2005.

eininger, M. (Ed.). (1991/2005). Culture, care & universality: A theoryfor nursing. New York: National League for Nursing.

inkler, M., Blackwell, A., & Thompson, M. (2003). Commu-nity-based participatory research: Implications for public healthfunding. American Journal of Public Health, 93, 1210–1213.

ielsen-Bohlman, L., Panzer, A., & Kindig, D. (Ed). (2004). Healthliteracy: A prescription to end confusion. Washington, DC:Institute of Medicine. Available: http://www.nap.edu/. Ac-

cessed June 24, 2005.

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ffice of Minority Health (OMH). (2004). Report: Setting the agendafor research on cultural competence in health care. Available:http://www.omhrc.gov/. Accessed June 24, 2005.

uthor DescriptionDr. Angeline Bushy’s scholarly interests include

ural nursing practice, education needs, and ruralulnerable populations. She has published and pre-

ented widely on both of these topics.