Rural Primary Care Providers’ Perceptions of Their Role in the Breast Cancer Care Continuum

CURRENT RESEARCH IN RURAL HEALTH

Rural Primary Care Providers’ Perceptions of Their Rolein the Breast Cancer Care ContinuumKathleen M. Rayman, PhD, RN1 & Joellen Edwards, PhD, RN2,3

1 College of Nursing, East Tennessee State University, Johnson City, Tennessee2 College of Nursing, East Tennessee State University, Johnson City, Tennessee3 Center for Nursing Research, East Tennessee State University, Johnson City, Tennessee

This research was supported by grant no.

H57/CCH420134 from the Centers for Disease

Control and Prevention (PI, Bruce Behringer,

MPH). The authors wish to thank the primary

care provider participants for their time and the

meaningful dialogue that made the study

possible. For further information, contact:

Kathleen M. Rayman, PhD, RN, Graduate

Program Director, PO Box 70658, East

Tennessee State University, Johnson City, TN

37614; e-mail [email protected].

doi: 10.1111/j.1748-0361.2010.00281.x

Abstract

Context: Rural women in the United States experience disparity in breastcancer diagnosis and treatment when compared to their urban counterparts.Given the 11% chance of lifetime occurrence of breast cancer for women over-all, the continuum of breast cancer screening, diagnosis, treatment, and recov-ery are of legitimate concern to rural women and their primary care providers.Purpose: This analysis describes rural primary care providers’ perceptions ofthe full spectrum of breast cancer screening, treatment, and follow-up care forwomen patients, and it describes the providers’ desired role in the cancer carecontinuum.Method: Focus group interviews were conducted with primary care providersin 3 federally qualified community health centers serving a lower income, ruralpopulation. Focus group participants (N = 26) consisted of 11 physicians, 14nurse practitioners, and 1 licensed clinical psychologist. Data were generatedfrom audiotaped interviews transcribed verbatim and investigator field notes.Data were analyzed using constant comparison and findings were reviewedwith a group of rural health professionals to judge the fit of findings with theemerging coding scheme.Findings: Provider relationships were characterized as being with women withcancer and comprised an active behind-the-scenes role in supporting their pa-tients through treatment decisions and processes. Three themes emerged fromthe interview data: Knowing the Patient; Walking Through Treatment Withthe Patient; and Sending Them Off or Losing the Patient to the System.Conclusions: These findings should be a part of professional education for ru-ral practitioners, and mechanisms to support this role should be implementedin practice settings.

Key words breast cancer care, provider perspectives, rural primary care.

Breast cancer is an illness of national concern, with morethan 180,000 women diagnosed with the disease yearlyin the United States.1 The continuum of breast cancercare flows from prevention and screening through di-agnosis, treatment, and posttreatment follow-up.2 Ad-vances in diagnosis and treatment options have ex-panded, and the emergence of highly specialized cancertreatment centers and multidisciplinary teams of special-

ists have played a role in increasing survival rates andmaximizing positive outcomes for patients.3

Yet, rural women in the United States experience dis-parity in breast cancer diagnosis and treatment, withdiagnosis occurring at a later stage than their urbancounterparts.4 Rural women also have persistently lowermammography screening rates.5,6 Lack of insurance, ge-ographic inaccessibility of screening mammography, lack

The Journal of Rural Health 26 (2010) 189–195 c© 2010 National Rural Health Association 189

Rural Breast Cancer Care Rayman and Edwards

of health knowledge, lower income, and lower rates ofeducation influence screening activities, and they havebeen cited as contributors to lower rates of screening inrural areas.7-10

Provider recommendation to undergo mammographyhas been noted as one of the most important reasons forcompliance.11,12 Provider factors that may affect screen-ing and are associated with early diagnosis and treat-ment have been identified. These include specialty ofprovider, gender of provider, provider confidence in andknowledge of screening guidelines, office systems thatprompt recommendation, and perceptions of patients’ be-liefs about screening. These patient and provider factorsare operational and may be exacerbated in rural prac-tices, where providers have fewer office support systemsand training opportunities, and where cultural perspec-tives between provider and patients may differ.6,13-17

Primary care providers most likely to practice in ruraland underserved areas include family physicians, nursepractitioners, and physician assistants. These providers of-ten maintain long-standing relationships with their pa-tients, and they strive to build trust and rapport withthem.18 Primary care providers’ roles in breast cancer careinclude screening, diagnosis, referral, and posttreatmentfollow-up.16,19,20 Rural primary care providers have beenshown to value education about cancer screening, diag-nosis, and treatment yet struggle to keep up with rec-ommended guidelines and the plethora of new treatmentinformation and options.13,21,22 They are likely to be theprovider who discovers, or sets in motion a referral thatdiscovers, a breast cancer diagnosis. Yet, when cancer isconfirmed, care of the rural patient is immediately andappropriately transferred to a cancer center or tertiarycare facility that offers oncology services in the forms ofsurgery, chemotherapy, and radiation treatments. Whilebreast cancer patients may be transferred from oncologycare back to primary care providers at the completion oftreatment, the timing of the transfer and the responsibil-ities of the primary care provider are not yet guided byscientific evidence.23-25

Rural women and providers experience additionalchallenges as treatment begins in specialized centers,which are located in urban areas that are often far fromthe familiarity of the patient’s home. Distance to oncol-ogy centers may play a role in the ability of the patient tocomplete treatment, causing loss of work, income, andadditional family stress beyond that already caused bythe illness. Distance may increase the potential for frag-mentation of care between cancer specialists and primarycare providers, and it may compromise the continuity ofcare.26 The value of coordination among providers andcontinuity of care in increasing adherence to screeningguidelines has been demonstrated.10,27 Similarly, coordi-

nation of care in cancer treatment is associated with im-proved patient outcomes.3

Given a woman’s 11% chance of lifetime occurrence ofbreast cancer,9 the continuum of breast cancer screening,diagnosis, treatment, and recovery are of legitimate con-cern to rural women and their primary care providers.Few studies have addressed the current roles of the pri-mary care provider in breast cancer care for rural women,and little is known of their preferred roles in screening,during breast cancer treatment, and after treatment.

Purpose of the Study

The purpose of this qualitative study was to describe ruralprimary care providers’ perceptions of the full spectrumof breast cancer screening, treatment, and follow-up carefor female patients in their practices, and to discover theirdesired role as providers in the cancer care continuum.The study was approved by the University InstitutionalReview Board for the protection of human subjects.

Setting and Participants

The study was conducted in 3 rural primary care practicesin Appalachian areas of southwest Virginia and northeastTennessee. All 3 practices were federally qualified com-munity health centers serving a lower income, rural pop-ulation. The clinics were located from 33 to 70 miles fromtertiary cancer referral centers. In each clinic setting, anaverage of 10 women were diagnosed with breast cancerin a year’s time.

A group interview with providers was conducted ateach site. The number of focus group participants rangedfrom 8 to 10, with a total of 26 participants. Of these,8 were men and 18 were women. There were 11 physi-cians, 14 nurse practitioners, and 1 licensed clinical psy-chologist. The length of time in practice ranged from lessthan 1 year to more than 20 years. Five of the providersconsidered themselves Appalachian and had grown upin the communities they now served, and 5 additionalproviders had grown up in other rural areas. The remain-der was originally from suburban areas or urban centers.

Data Collection and Analysis

A qualitative, inductive interpretive approach was usedto collect interview data with each of the 3 focus groups.Consistent with an inductive interpretive approach, hy-potheses were not prespecified or tested.28 Rather, find-ings for this study emerged from understanding and in-terpreting the experiences described by the providers.Data were generated from structured focus group sessions

190 The Journal of Rural Health 26 (2010) 189–195 c© 2010 National Rural Health Association

Rayman and Edwards Rural Breast Cancer Care

and investigator field notes. Focus groups were used toenrich the description and facilitate comprehensive in-terpretation of the data.29 A structured group format inwhich each participant was asked each question capturedcertain dimensions of the data for all participants, andit allowed them to respond to each other’s commentsand interject freely throughout the group sessions. Eachparticipant was asked a “grand tour” question, “Tell usabout your experiences in the continuum of care forbreast cancer in your practice, from screening and de-tection to follow-up after treatment.” Subsequent ques-tions were generated as the discussion took shape andwere guided by participant responses. For example, par-ticipants were asked to describe what barriers to partic-ipation in the continuum of breast cancer care for theirpatients they had encountered, and what was workingwell.

Data collection and analysis proceeded simultaneously.Data from the 3 focus groups (N = 8; N = 8; N =10) consisted of responses from primary care physiciansand nurse practitioners and 1 psychologist educationallyprepared at the doctoral level. Focus group interviewswere audiotaped and lasted 2 to 2.5 hours each. Audio-tapes were transcribed verbatim. Data were analyzed us-ing the constant comparative method where portions oftext were compared to yield categories and themes. Re-assessment and refinement of the categories and themescontinued throughout data collection and analysis, re-sulting in an explanation of the providers’ experience ofproviding cancer care to rural Appalachian women withbreast cancer. Emergent findings were reviewed with agroup of health professionals practicing in rural areasin the region to assist with establishing credibility andtruth. The providers reviewed emergent findings to judgethe fit of the findings with the emerging coding scheme.This step assisted with finalizing the findings, and in de-veloping a cohesive explanation or model of providerexperiences.

Results

Primary care providers in the study described their ex-periences of providing cancer care to rural women withbreast cancer. For all providers, relationships with pa-tients were paramount. These relationships provided away to encourage patients to seek screening when theyhad not before, and the relationships were the im-petus for providers to problem-solve, coordinate, andpiece together services needed by patients. Three themesemerged from the interview data: Knowing the Patient;Walking Through Treatment With the Patient; and Send-

ing Them Off or Losing the Patient to the System.

Knowing the Patient

Providers described 4 dimensions of having personalknowledge of their patients with breast cancer that hadbearing on patient screening and treatment. Patientsviewed them as trusted experts, and they in turn viewedtheir patients as experts in their own lives. The providersin this study did not tell their patients what to do; rather,they got to know the women and many details of theirlives. This detailed knowledge of the particulars of pa-tients’ lives provided insight into what kept them com-ing for care, what got them to screening, and also pro-vided specifics regarding barriers to screening and care.For example, a woman who had never had a mammo-gram (though understanding fully the importance of thetest, given her age and family history), would decide tohave it because the provider suggested it. Providers ex-pressed their belief that simply telling their patients tohave the test did not make a difference or have an impacton screening behavior. But, because providers had rela-tionships with the women in their practices, knew the de-tails of their lives, and could make a suggestion specific totheir personal circumstances, they influenced screeningand treatment behaviors in positive ways. The followingprovider comments illustrate this:

I make a really big point at every visit, whetherit’s a cold or what, to ask them screening ques-tions like, “Have you had your pap smear, mam-mogram?” And, I get a lot of people (women) whosay “You know, I haven’t in a really long time andI should do that.” And they come back for it, justfrom me asking and somehow having . . . creatingsome sort of dialogue that it doesn’t have to be ascary thing.

One patient had breast cancer and was very inde-pendent in her care. I sent her to one doctor and hewanted to do a mastectomy. She researched it onthe Internet and she said no. She wanted a lumpec-tomy and she was well-informed and she is doingreally well today. She went with what she wantedto do and I think that’s really important.

Providers believed the women responded to their sug-gestions not so much because they were health care ex-perts (though they clearly felt the women viewed themin this way, and depended on their expert knowledge),but more so because there was a human-to-human caringconnection. Medical expertness and caring human quali-ties were equally valued by their female patients, accord-ing to the providers. Women were motivated to screen-ing, self-care, and treatment because their providers caredabout them, not just cared for them. In this way, the



trusted relationships they had developed offered a type ofleverage toward self-care—women cared for themselvesbecause their providers cared for them personally. Oneprovider’s comment depicts the value placed by providerson relationships with their patients: “You know the pa-tients more than anybody else. I think it falls on your re-sponsibility to explain it to the patient because they willlisten to you better than anybody else.”

Walking Through Treatment With the Patient

Primary care providers described that patients in treat-ment for breast cancer commonly came to them aftera visit to the specialist or oncologist at the cancer cen-ter to elicit their opinion on recommended treatmentsand therapies before initiating the prescribed treatment.Patients relied on the primary care providers to man-age symptoms, interpret information, and to help themmake sense of their personal experience of breast can-cer. The women relied on their relationships with theirproviders as trusted experts and wanted their view onrecommended therapy before they were willing to start.In essence, they went home to the doctor or nurse practi-tioner that they knew to ask “what do you think of this(treatment or therapy)?” as illustrated by the followingprovider comments:

When she found out she had breast cancer shewanted me to walk through it with her. It was ahigh compliment to me, and I cherish that.

A woman might say, “The specialist gave me thisto take. Do I need to take it?” And when I askedwhen, she’d say, “Two weeks ago. Is it okay if Istart it?” Sometimes women will come into my of-fice and say “My oncologist is recommending this,what do you think?”

For some providers this situation was uncomfortable.Reasons for discomfort included lack of knowledge ofcurrent treatment protocols, lack of communication fromthe oncologist regarding exactly what that person hadcommunicated to the patient, and even inability to dis-cern specialists’ handwriting on patient records from theoncology center. For some providers, the Internet wasa source of state-of-the-science treatment, and they re-lied on it often to stay current and to be able to an-swer patient questions. They expressed that patients fre-quently brought current treatment information to them,as patients and providers alike had access to a great dealof electronic information. Sometimes, they struggled tokeep up with their patients’ knowledge about treatment,or tried to help them sort out which information shouldreceive their attention. Providers described patients whoranged from highly literate and Internet savvy to illiterate

and unable to read medication bottle instructions. Someproviders stated that certain patients used the Internetextensively to inform themselves about possible treat-ments, yet other providers found that only a handful ofpatients had Internet access. In the words of one provider:

I’ve taken care of a lot of poor people (in a pre-vious metropolitan practice setting) . . . but they’recity people and they know about mammogramsand colonoscopies and they know about pap smearsand they know they’re supposed to get them. . . . Iwouldn’t say that the (urban) patients were neces-sarily more educated from the standpoint of school,but they were more educated in health issues.

Sending Them Off: Losing the Patientto the System

Although many patients initiated contact with the ruralprovider during treatment, for some providers, referringpatients to oncology specialist care resulted in patients be-ing out there. They were not sure what was happeningwith their care, and they felt out of the loop. This groupof providers described discontinuities in care related towho’s in charge, or not knowing clearly which respon-sibilities for patient management belonged to the ruralprovider, and which would be handled by the oncologist.This lack of clarity started, for some, at diagnosis. Some-times providers were unclear about who would give in-formation to the patient regarding her diagnosis, statingthat in certain instances, the oncologist wanted only tohandle treatment, and not any of that other stuff such asgiving diagnostic bad news, offering support, or handlingpatients’ emotional needs as a part of care. For example:

If the biopsy comes back positive then most timesthe surgeon or whoever’s there will actually call meand tell me that the biopsy is positive and in thosecases I call the patient into the office and discuss itwith them.

The biggest problem I have is if I send them away,knowing who is going to tell them because that isa terrible experience. . . . I had recently a lady withcarcinoma on the biopsy and I called and askedthem (cancer center) if they had told her and theysaid, “No, no, you tell her that.” I wasn’t aware thatI was to tell her . . . .

The providers described their perceptions that somespecialist care was very segmented, while their own per-sonal approach to practice and to their patients washolistic and inclusive. It was not that they minded giv-ing information about diagnosis and even treatment



(provided they felt appropriately informed); what theyreacted to was the effect that this fragmentation had ontheir patients. The women often had a several-day waitbetween diagnostic testing and learning of their diagnosisand upcoming therapy, if the oncologist took the positionthat he or she dealt with only the treatment portion ofthe illness. Providers viewed this as being looked downupon by their specialist colleagues, and as a devaluing byspecialists of both the patient’s experience at the criticaltime of diagnosis, and of the provider’s role as one whodealt with more “low-tech” areas of patient care. The fol-lowing provider comments illustrate their experience offeeling devalued:

We are pretty much a remote, disregarded referralsource.

Once they go to the center or to the surgeonwe’re pretty much out of the loop until they showup post (surgery or treatment).

There was the impression that in this town thatwe might be behind in our practice, but we havemade some new doctors . . . realize that we’re notbehind.

Even within the rural settings, however, providershad differing experiences with their referral sources. Al-though all acknowledged fragmentation of care, somedescribed good personal relationships with specialists inreferral centers that smoothed communication processesand coordination of care, as depicted by 1 provider’s com-ment: “I get a letter from the oncologist every time thathe sees them . . . to keep me informed of what’s going on.”

Providers described a set of barriers that, in their view,contributed to the discontinuities experienced by some oftheir patients with breast cancer. Financial barriers werenoted frequently, since rural women often had to sched-ule screening or treatment during the week, necessitatingthat they miss a day of work. The expense of travel to re-ferral centers was also noted as a barrier by some, as wasthe financial burden of certain treatments or drugs notfully covered by insurance. Overall, the providers in thisstudy noted that their uninsured patients fared far betterin terms of treatment than those who were underinsured.

Discussion

The primary care providers in this study described theirmajor roles in the continuum of breast cancer care asknowing their patients personally; they clearly valuedthe relationships they had established with breast can-cer patients and believed that breast cancer patients,from screening to posttreatment follow-up, responded tothe mutual caring established in provider-patient rela-

tionships. The idea of the importance of a mutual andpersonal patient-provider relationship stands out as crit-ical to optimizing outcomes of all aspects of the con-tinuum of breast cancer care for rural women. Consis-tent with Kleinman,30 the providers in this study viewedtheir patients as experts in their own lives. They believedthat their personal knowledge of patients’ circumstancesand needs led to more individualized, appropriate care.Providers also believed that their patients viewed them astrusted experts related to their health. This finding is con-sistent with that of Parchman and Burge,18 who foundthat well-established patient-provider relationships leadto trust, which can in turn positively influence achieve-ment of needed care. The ability of providers and patientsto form relationships needs to be supported through prac-tice patterns that promote continuity of care.31 Relation-ships, as described by participants in this study, wentbeyond service arrangements and enhanced communi-cation; the relationships were characterized as being withwomen with cancer. This finding suggests that theseproviders offer a cultural milieu that sees and knows people

and that is an integral part of their practice. This char-acterization is analogous to an ethic of care describedby Frank,32 wherein providers are interested in hearingtheir patients’ illness stories and consider both the per-sonal narrative and life context as essential to provid-ing care. According to Frank, patients’ stories of their ill-ness provide the opening to being with patients on theirillness journey. Such presence, according to these ruralproviders, was as important to their patients with breastcancer as clinical care and treatment.

Viewing their providers as trusted experts led many pa-tients to consult with the providers informally through-out breast cancer treatment, outside the formal referralsystem. Some patients even delayed initiation of treat-ment until they had talked with their trusted provider.Although the providers in this study viewed coordina-tion of care as part of their role expectations, the idea oftrusted expert or consultant went beyond coordination.Providers described an active, behind-the-scenes role in sup-porting their long-term patients through treatment deci-sions and processes. This significant finding should be apart of professional education for rural practitioners, andmechanisms to support this role should be implementedin practice settings.

Wide variation in patient characteristics as described byproviders was found in these rural groups, showing theheterogeneity of rural people in Appalachia. For exam-ple, providers described patients who had very low read-ing and educational levels versus those who were highlyeducated, Internet savvy and quite assertive. This differsfrom previously published findings that describe fatalismas a common characteristic of the population.17



One consistent theme across providers and sites wasthe patients’ financial burden from screening and detec-tion through follow-up phases of cancer care. Because ofgeographic distances from treatment centers, it was oftennecessary for patients to miss a day of work to obtain di-agnostic tests or treatment once cancer was discovered.Providers noted that these local economic circumstancesand employment situations figured heavily in their pa-tients’ ability to obtain treatment, and they made theentire cancer experience harder for their patients. Thisfinding underscores the importance of strengthening thesafety net of rural providers and of creating workablelinkages with tertiary treatment centers so that financialbarriers can be addressed from the perspectives of the pa-tient, rural providers, and providers in urban treatmentcenters.

The intent of the qualitative design of this study is notto generalize broadly, but to explore the perceptions andexperiences of participants and lay the groundwork forthe direction of future research. One limitation of thestudy is that the participants were from a specific geo-graphic location; other rural providers may describe dif-ferent experiences with their patients, referral systems,and desired role. Additionally, the providers were askedto consider their breast cancer patients from their ownperspectives; a demographic description of their patientswas not available but may have added context to thefindings.

The findings have implications for the educationalneeds of rural providers, such as access to up-to-date can-cer care information and guidelines for establishing ef-fective referral linkages with tertiary providers. Addition-ally, providers perceived their “behind-the-scenes” roleas trusted expert as critical to patient outcomes. Thesedescriptions of the integration of professional and per-sonal qualities may differ from traditional training cur-ricula, and they should be emphasized for those new torural practice. To further extend the knowledge base re-garding the experience of rural breast cancer patients andtheir providers, future studies should include the perspec-tives of both rural breast cancer patients and specialtyproviders from urban treatment centers. Integration ofthese perspectives can lead to creative solutions for man-agement of breast cancer care for rural women, and itmay spur the development and testing of various practicemodels that will meet the needs of patients and both ruralprimary care and urban specialty providers.

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Documents

Rural Primary Care Providers’ Perceptions of Their Role in the Breast Cancer Care Continuum