at SciVerse ScienceDirect

European Journal of Oncology Nursing 17 (2013) 528e535

Contents lists available

European Journal of Oncology Nursing

journal homepage: www.elsevier .com/locate/ejon

Hospitalecommunity interface: A qualitative study on patients withcancer and health care providers’ experiences

Hanna Admi a,*, Ella Muller a, Lea Ungar b, Shmuel Reis b,e, Michael Kaffman b,c,Nurit Naveh b,c, Efrat Shadmi d

aNursing Division, Rambam Health Care Campus, P.O.B. 9602, Haifa 31096, IsraelbDepartment of Family Medicine, Clalit Health Services, Haifa District, IsraelcRuth and Bruce Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, IsraeldDepartment of Nursing, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israele Faculty Development Unit, Bar Ilan University, Faculty of Medicine in the Galilee, Safed, Israel

Keywords:Cancer patientsOncology health care providersHealth care system barriersHospitalecommunity interfaceQualitative designCare continuity

* Corresponding author. Tel.: þ972 4 8542395; faxE-mail addresses: h_admi@rambam.health.gov.il

reis@netvision.net.il (S. Reis).

1462-3889/$ e see front matter � 2013 Elsevier Ltd.http://dx.doi.org/10.1016/j.ejon.2013.02.005

a b s t r a c t

Background: Patients with cancer must deal with complex and fragmented healthcare systems in addi-tion to coping with the burden of their illness. To improve oncology treatment along the care continuum,the barriers and facilitators for streamlined oncologic care need to be better understood.Purpose: This study sought to gain insight into the hospitalecommunity interface from the point of viewof patients with cancer, their families, and health care providers on both sides of the interface i.e., thecommunity and hospital settings.Methods and sample: The sample comprised 37 cancer patients, their family members, and 40 multi-disciplinary health care providers. Twelve participants were interviewed individually and 65 took part in10 focus groups. Based on the grounded theory approach, theoretical sampling and constant comparativeanalyses were used.Results: Two major concepts emerged: “ambivalence and confusion” and “overcoming healthcare systembarriers.” Ambiguity was expressed regarding the roles of health care providers in the community and inthe hospital. We identified three main strategies by which these patients and their families overcamebarriers within the system: patients and families became their own case managers; patients and healthcare providers used informal routes of communication; and nurse specialists played a significant role inmanaging care.Conclusions: The heavy reliance on informal routes of communication and integration by patients andproviders emphasizes the urgent need for change in order to improve coordinating mechanisms forhospitalecommunity oncologic care.

� 2013 Elsevier Ltd. All rights reserved.

Introduction

Patients with cancer face a wide array of challenges in thecourse of their care. In addition to dealing with disease symptoms,emotional stress, social and financial pressures, and self-management needs, patients often encounter a disarrayedhealthcare system and are charged with care navigation andbureaucratic challenges. Care of patients with cancer is typicallyprovided across several settings, with a variety of providersdelivering various types of care at different stages, often with no

: þ972 4 8541696.(H. Admi), reisshm@biu.ac.il,

All rights reserved.

clear understanding of each other’s role (Stalhammar et al., 1998).The difficulties encountered by patients and their families innavigating complex and fragmented healthcare systems havebeen well documented in various healthcare systems worldwide(Berendsen et al., 2009; Farquhar et al., 2005). While barriers tocancer care coordination are well acknowledged (Walsh et al.,2010), to date, little is known of the mechanisms by which pa-tients and their providers overcome system barriers to achieveseamless cancer care.

Background

Uncertainty about the division of responsibility, poor commu-nication among health care providers, and inadequate transfer ofinformation between hospital-based physicians and primary care

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535 529

physicians (PCPs), constitute preventable breaches in care(Farquhar et al., 2005; Sada et al., 2011). A recent qualitative studyidentified six barriers to effective cancer care coordination:confusion regarding roles and responsibilities of the health careteam, lack of multidisciplinary team meetings, lack of continuity intransitioning across care settings, inadequate communication be-tween specialists and primary care providers, inequitable access tohealth services, and scarce professional resources (Walsh et al.,2010). In addition, several studies have addressed communicationgaps, uncertainty about divisions of responsibility, and differencesin professional strategies of cancer management between PCPs andoncologists (Babington et al., 2003; Barnes et al., 2000; Smeenket al., 2000; Klabunde et al., 2009).

While current literature acknowledges the deficiencies in cancercare integration, little is known on howpatients and their providersmanage their care across providers and care settings. This studyaims to fill this gap by examining the experiences of patients, theirfamilies, and health care providers from community as well ashospital settings.

Methods

This qualitative study is part of a larger study aimed at investi-gating the factors influencing the nature and quality of cancer careat the hospitalecommunity interface (Shadmi et al., 2010). Thetheoretical orientation for this qualitative study was based ongrounded theory, which develops a theory about phenomena ofinterest from a corpus of data. Grounded theory is a complex iter-ative process consisting of a series of steps, which after careful dataanalysis, generates a theory (Glaser and Strauss, 1967; Lingard et al.,2008; Strauss and Corbin, 2008).

Sampling

A purposive sampling method was employed to select partici-pants, which included patients, their family members, and multi-disciplinary health care providers. Participants were selected forthe purpose of exploring their experiences with care provided inboth the hospital and the community care settings. The settings forthis study included oncology units and day care clinics in bothhospital and primary care clinics.

The eligibility criteria of patients and their family memberswere: (1) a diagnosis with any type of cancer, (2) over 18 years ofage, (3) able to speak and understand Hebrew (4) agreement toparticipate in focus groups or one-on-one interviews. Patients wereexcluded if they met hospice care criteria or end-stage disease toprotect them from unwarranted emotional and physical exhaustionat this point in their lives.

The health care staff participants were selected for their abilityto confirm or challenge the emerging theory. They represented amultidisciplinary team from the community and the hospitalhealth care sites. They all had extensive clinical and managerialexperience in the field of oncology and agreed to participate infocus groups or personal interviews. All interviewees were willingto share from experiences within their context. Individual in-terviews and focus groups were used in this study to increase theprobability of credible findings and interpretations (Lincoln andGuba, 1985).

Cycles of simultaneous data collection and analysis wereconducted where analysis informed the next cycle of datacollection. Sample sizes were determined based on ongoing datacollection, analysis and refinement. Recruitment of participantscontinued until data had reached saturation (Lingard et al.,2008).

Data collection

Five focus groups that included patients and their families wereconducted. Each group comprised five to eightmembers. Four focusgroups were conducted within a hospital setting among hospital-ized and day care patients, and one within the community in aprimary care clinic. All potential participants were approached andrecruited voluntarily by local health care personnel. Patients andtheir family members were asked about their community, hospital,and transitional care experiences.

Triangulation technique is used to improve credibility of find-ings and interpretations (Lincoln and Guba, 1985). In this study weused three modes of triangulation: multiple and different modes ofsources, methods and investigators. A mixed data collectionapproach allowed for both proliferation of ideas (focus group) andconfidentiality of in-depth personal interviews. Depth of perspec-tive was made possible by involving several investigators fromdifferent disciplines; their examination of the findings as a grouphelped avoid interpretive bias.

Interview guide

All focus groups and interviews took place during 2008. Focusgroups and interviews were led by seven researchers (three nurses,three physicians, and one social worker) using complete topicguided open-ended questions. For the study purposes we devel-oped three sets of interviewguides, each one addressed to a specificgroup of participants from both the community and the hospital:patients and their families, health care personnel, and policy de-cision makers. Each interview guide included questions in accor-dance to the study aim tailored to the unique perspective of thedifferent participants. Examples of questions to patients included:“What do you do when you are at home and realize you have ahealth problem? Who is managing your care at present? Howwould you describe the types of care you received from your PCP?What types of care do you receive from the oncology unit?”

Initial “grand tour” questions were designed to promote opendiscussion and specific probes were pre-designed for subsequentstages of the interview. Health care providers were asked: “How doyou view the relationships at present between the PCP, oncologist,and oncology nurse? In your opinion, what should be the PCP’sinvolvement during hospitalization of oncology patients undertheir responsibility? What obstacles/difficulties do you face in thecommunityehospital interface at present? In your opinion, whatshould be done to ensure continuity of care?”

Each session lasted 60e90 min. All interviews were audio-recorded and transcribed verbatim.

Analysis

Based on the grounded theory approach, purposive samplingand constant comparative analysis were used (Glaser and Strauss,1967). All interview and focus group transcripts were reviewedline by line to search for coding, themes, concepts, and propositionsthat emerged from the data.

Four evaluative criteria (credibility, transferability, depend-ability, and confirmability) for judging the rigor of qualitative in-quiries were applied to increase trustworthiness of the analysisprocess (Lincoln and Guba, 1985). To increase credible findings, alltranscribed interviews were analyzed independently by at leastthree of the researchers, followed by peer debriefing. Reflections onthe data and interpretations were discussed until consensus andsaturation of emerging themes were achieved. Theoretical sam-pling continued, and the topical guide for interviews and focusgroups was modified after initial analysis.

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535530

Ethical considerations

Study approval was obtained from the institutional reviewboard of Rambam Health Care Campus. Informed consent was ob-tained from participants prior to interviews or participation in afocus group. To assure confidentiality, all personal identifying in-formation was removed from the transcripts prior to analysis.

Results

A total of 37 patients and their family members, and 40 healthcare providers (physicians, nurses, social workers and administra-tive assistances) participated in this study (Table 1). Thirteen phy-sicians participated in the study. A focus group was conducted witheight PCPs; personal interviews were conducted with five oncolo-gists in hospital and community settings. Sixteen nurses (headnurses, oncology nurse specialists and senior nurses at the hospital;community urban and rural nurses) participated in the study; 13participated in two focus groups and three participated in personalin-depth interviews. Five hospital social workers participated in afocus group. Six administrators in the field of oncology were alsoincluded.

Two major categories emerged from analysis of the patient andprovider transcripts: “Ambivalence and confusion” and “over-coming healthcare system barriers.”

Table 1Participants (patients, families and health care providers) according to data collection m

1.1 Patients & families

Group no. No. of participants Participant charact

Focus groups1 6 Patients & familiesb

2 8 Patients & families3 5 Patients4 7 Patients & families5 8 PatientsTotal: 34 patients & familiesIn-depth personal interviews1 1 Patient2 1 Patient3 1 PatientTotal: 3 Patients

Total: 37 patients & families

1.2 Health care providers

Group no. No. of participants Participant characteristics

Focus groups1 7 Oncology senior nurses2 6 Oncology nurse specialist3 5 Oncology social workers4 5 Oncology administrative5 8 Primary care physiciansTotal: 31 health care providersIn-depth personal interviews1 1 Medical director oncology2 1 Medical director radiation3 1 Director of medical review4 1 Medical review (Nurse)5 1 District medical director o6 1 District medical director,7 1 Head nurse, rural clinic8 1 Head nurse, urban clinic9 1 Administrative assistant,Total: 9 health care providers

Total: 40 health care providers

a Interviewer/Researcher: 1. RN, PhD: Director of Nursing, Rambam Health Care CamSW, PhD: Social Worker, Department of Family Medicine, HMO, Haifa. 4e6. MD; DeparTechnion-Israel Institute of Technology, Haifa. 7. RN, PhD: Nurse Researcher, RN, Depart

b Overall, five spouses participated in three focus groups.

Ambivalence and confusion

Perceptions of patients and family membersThe attitudes of patients toward providers reflected the gap

between patient needs and expectations of the healthcare systemand actual experience. When relating to the PCP, patients oftenshared different experiences. Patients expected their PCP to showpersonal interest in them when they get sick and while hospital-ized. One patient, for example, shared his expectations fromthe PCP:

etho

erist

s

assis

divun(P

f onHM

urba

pustmemen

“I think the PCP needs to be involved and show interest. When youfind out that you are ill you feel alone. As if you fall into a pit.There is much loneliness. The PCP should call you and help andnot wait for my phone call. He doesn’t call to ask how I feel and isn’tinterested in my situation”

Focus Group (FG) 5, Community, Patient 3

Another patient shared a completely different experience:

“My PCP knows everything about me. He accompanies me and Ifeel I am his patient every minute.”

FG 3, Hospital, Patient 2

ds and interviewers.

ics Site Interviewer/Researchera

Hospital 1, 2Hospital 1, 2Hospital 7Hospital 7Community 3, 5

Community 6 MDCommunity 6 MDCommunity 6 MD

Site Interviewer/Researchera

Hospital 1, 2Hospital 1, 2Hospital 1, 2

tants Hospital 1, 2Community 3, 5

ision Hospital 1, 2 RN, RNit Hospital 7, 2 RN, RNhysician) Hospital 1, 2 RN, RN

Hospital 1, 2 RN, RNcology Community 4, 5 MD, MDO Community 4,5 MD, MD

Community 3 SWCommunity 3 SW

n clinic Community 3 SW

(RHCC), Haifa. 2. RN, MA: Director of Oncology Nursing Division, RHCC, Haifa. 3.nt of Family Medicine, HMO & Ruth and Bruce Rappaport, Faculty of Medicine,t of Nursing, University of Haifa.

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535 531

An issue that was raised by the some of the patients was that thePCP’s knowledge about oncology diseases was inadequate:

“There is no point in turning to the primary care team. They knownothing about oncology patients. My PCP doesn’t know anythingabout my diseases. Even when I ask him to send me to the ER hesends me to a central community clinic.”

FG 1, Hospital, Patient 1

Another patient stated how he knows to differentiate betweenexpectations from the PCP and the oncologist:

“If it’s a simple matter that is not related directly to my oncologicdisease I consult my PCP. If for example I feel weakness I’ll first turnto my PCP. Based on my experience, my PCP is reliable and if hedoesn’t know what is the reason for my complaint he will alwayssend me to a specialist doctor.”

FG 2, Hospital, Patient 1

Patients were frustrated with having to find their way betweenthe various providers; they were stressed by the bureaucraticrequirement to refer to their PCP before any specialist. In addition,patients struggled with ambivalence; although frustrated becauseof the lack of availability of their PCP, they still wanted closercontact with them. In the words of one of the hospitalizedparticipants:

“When you have a problem you must go directly to the emergencyroom or to the oncologist. What can the family physician do? He isnot available. He is in the community clinic only twice a week. He ismy doctor, he knows me personally for years and he cares aboutme. I can call him and sometimes he calls.”

FG 3, Hospital, Patient 2

Over time, patients with cancer learn what to expect from theirPCP. They view the PCP as their personal physician who knowsthem intimately, is a resource for general basic health care, andsometimes serves as an administrator. Patients also becamefamiliar with the rules and regulations of the healthcare system. Inthe following example, one patient expressed frustration that herfamily doctor had to take on the role of administrator at theexpense of providing quality treatment.

“It really bothers me that she has to be an administrator, becausethat takes away from the time she has to deal with importantmatters. She should fight for getting the medications I need. She hasto negotiate for everything related to my cancer. She does it for me,with a lot of respect, but this is an extraordinary waste of the timeof a high quality doctor.”

FG 5, Community, Patient 2

Patients accorded great importance tomaintaining continuity ofcare and communication between providers on both sides of theinterface. Most referred to the present lack of such communication,as indicated by this patient:

“There needs to be connections between the family doctor and thehospital. I’ve never heard of such. I haven’t heard of a physician inthe hospital calling a family doctor. This doesn’t happen.”

FG 5, Community, Patient 1

Most patients interviewed expressed a desire for their familydoctor to take on the role of an integrator of care. One womanexplained the rationale behind this:

“My expectations from my family doctor are that she will be anintegrator for the disease. There’s an oncologist, a hematologist, a

pain specialist. From my side, it’s totally acceptable that she (myfamily doctor) should tell me that this is something she does notknow. She knows me not only in regard to the illness, but also frommy personality. She sees the whole picture. She sees me as awhole human being.”

FG 5, Community, Patient 4

Although patients understood the limitations of their PCP, theyalso expressed expectations for personal interest and communi-cation that were sometimes unfulfilled. This was exemplified bytheir repeated expectation that the PCP would call or visit duringthe hospitalization.

Our findings revealed disappointment among patients. They feltthey were at the mercy of a bureaucratic system. There was nooverall integrated plan for their management nor was there con-tinuity of care, resulting in wasted time and energy. Patients wereaware of health care providers’ difficulties, such as overload andhigh turnover among oncology specialists, lack of oncologicexpertise among family doctors, and bureaucratic constraints.Nevertheless, most of these patients were not sympathetic to thelimitations of the healthcare system, and expressed bitterness andfrustration. They expected guidance and coordination, ongoingcommunication between providers, and to be treated as wholehuman beings. Most patients looked to the family doctor to fulfillthe role of case manager and coordinator of care, advocating ontheir behalf within the healthcare system, and serving as the pri-mary advocate for personal and medical problems.

Perceptions held by community-based providersCommunity-based providers (policymakers, PCPs, nurses, and

oncologists) acknowledged difficulties in communication amongstthemselves, as well as vis-a-vis hospital providers. This was espe-cially striking against a backdrop of conviction that communicationwas essential for maintaining care continuity and addressing pa-tient needs within the broader context of their health history,family, and socio-cultural background.

Most community providers perceived the PCP as a casemanager,i.e., a coordinator of all providers, the patient’s advocate, and thequintessential connection throughout all stages of treatment, andacross all care sites.

A medical administrator of the regional health maintenanceorganization summarized the situation:

“In the end, the responsibility for the oncology patient is on thefamily doctor.”

Interview, Community, Medical director 6

A PCP described her view of her role as a case manager andpatient advocate:

“I always say that as their doctor, I will accompany them, and itdoesn’t matter which station in oncology they reach, we continueto be together; that means that there is no disconnect between thepatient and myself. This is something that occurs at one point intime during a patient’s lifetime, during which I will stay by him; Icontinue to be his doctor.”

FG 5, Community, Physician 1

Interviewees differed in their perceptions of the reasons andresponsible agents for fragmentation in the healthcare system. Asexpected, providers’ roles affected their views. For instance, in thewords of the head of the oncology service in the community:

“Oncologists suffer greatly from lack of time. Therefore familydoctors must conduct follow-up of oncology patients; only that

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535532

family doctors do not have the necessary background, and only fewof them are capable of managing such follow-up.”

Interview, Community, Medical director 5

PCPs noted difficulties in maintaining communication with pa-tients due to specific factors relating patients with cancer, a lack ofcooperation from hospital and community oncologists, and theirown constraints such as lack of time, overload of administrativetasks, and lack of knowledge in oncology. In the words of one:

“There are some patients, who, immediately after diagnosis, spendall their time in the hospital; we hardly see them, and we are reallyonly in the role of a clerk.”

FG 5, Community, Physician 2

One PCP described her experience in dealing with hospital-based staff:

“It never happened that they called me from the hospital. I receivedwritten letters. A call to ask me about patients with cancer, it hasn’thappened. It seems to me that they ignore us. The relationship isin one direction. If we need to, we call, and they act like they’redoing us a favor. I’m surprised that oncologists or social workersfrom the unit don’t want to call the PCP and ask for informationabout our cancer patients, how they are managing, or to ask forhelp to talk to them (patients), for instance.”

FG 5, Community, Physician 3

Like PCPs, primary care nurses also described the lack ofcommunication with the hospital system. Information transfergenerally consisted of a hospital discharge letter delivered by thepatient. Many times patients were hospitalized without the com-munity health care staff ever knowing about it. They claimed thatno mechanism for routine updating between health care providersexisted, and in most situations, the doctor and nurse at the com-munity clinic would find out about a hospitalization directly fromthe patient or his or her family.

Primary care nurses are in charge of nursing care for the PCP’sdiverse population. They referred to cancer patients as a groupwithspecial needs, deserving priority and particular attention, andconsidered the hospital and oncologists as the main providers oftheir patients’ care. While nurses in urban settings noted that theircontact with patients was primarily regarding technical mattersand basic nursing procedures, nurses in rural areas, such askibbutzim, described their role as being more involved.

A nurse in an urban primary care clinic described her relation-ship with patients with cancer:

“They arrive at the clinic needing blood tests. I try not to have themwait too long with the other patients. I am a person they can turnto. They know that I am interested in their well-being. I’m in con-tact with them, but they don’t really need me.”

Interview, Community, Nurse 8

In the words of a nurse who currently works on a kibbutz, buthad worked in the past in a hospital oncology unit:

“. I initiated connections with nurses (in the hospital), weexchanged telephone numbers. Once a channel of communicationopens up, it’s possible to call and to ask if something is unclear inthe discharge recommendations. Because of the communicationcreated, one patient was discharged from the hospital earlier thanplanned. Staff nurses say to me, ‘Oh no, he has cancer.’ I took this toa different place. I know that cancer is now a chronic illness. I havean advantage in accompanying them. I have visited my patients inhospitals and saved people a lot of travelling.”

Interview, Community, Nurse 7

This is an illuminating example of a community nurse withextensive oncology experience who recognizes the importanceof continuity of care, and proactively shapes her role. In thisway, she provides a testament to the possibility of positivechange.

In general, community providers expressed the need for morereciprocity and collaboration across the interface and amongstthemselves to foster greater continuity of care. They believe thatcommunication between the various providers, and with patients,is essential; it should not be left to individual initiative, but ratherbe planned, established, and institutionalized.

Perceptions held by hospital providersHospital providers noted that steps to improve efficiency in the

health maintenance organization have had negative effects on pa-tients and on health care providers: waiting times to receivespecialized treatment (i.e. chemotherapy) have increased; patientsand their families feel trapped within a bureaucratic entanglement;and the PCP’s authority in dealing with cancer has been restrictedconsiderably. Members of the hospital staff expressed frustrationwith their role as mediator between patients and the bureaucraticsystem.

We asked the hospital oncology staff about their perceptions ofthe role of PCPs. From the hospital staff’s perspective, PCPs areperceived as lacking oncology expertise, as being overloaded withpatients, and having limited interest in their hospitalized patients.As a result, they avoid taking charge and unnecessarily refer pa-tients to the hospital.

One oncologist explained:

“They prefer to send their cancer patients to the hospital even forminor reasons; this overloads the system and increases patientsuffering. The primary care physician is present but absent.”

Interview, Hospital, Physician 2

A hospital oncology nurse emphasized patients’ preference to betreated by the tertiary care providers:

“There is a feeling that the cancer patient doesn’t knowwho to turnto. Cancer patients often call us with questions, rather than asknurses or doctors in their primary care clinic.”

FG 2, Hospital, Nurse 2

The hospital oncology staff noted that PCPs do not play a sig-nificant role in the care of their patients. Oncologists expect thePCPs to read the discharge letter and to contact the oncologist ifthere is a problem.

The head of the oncology department reflected on the currentcommunityehospital interface:

“There is currently no interaction between the two systems. Theconnection is from the oncologist by means of the discharge letter.The ideal model would be for the PCP to manage care and for theoncologist to serve as a consultant.”

Interview, Hospital, Physician 1

There are gaps in coordination of care and one-way commu-nication channels from the specialist to the primary caregiver.This situation, they feel, adversely affects patient outcomes, thework of health care providers, and the healthcare system ingeneral.

In summary, a general uncertainty of roles and ambiguityaround responsibilities prevails in oncology care among all partiesinvolveddpatients, family members, and community and hospitalproviders. Findings from this study suggest that patients withcancer and their families acquire strategic skills for navigating the

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535 533

healthcare system as their experience with cancer care unfolds.They expressed anger, confusion, and frustration at being tossedaround within the constraints of the healthcare system. In contrast,they conveyed appreciation, respect, and gratitude toward healthcare providers.

Among both community and hospital providers the general un-certainty concerning the essence of their roles and responsibilities iscompounded by the absence of established communication pro-cesses. Health care providers must deal with administrative andorganizational matters beyond their professional expertise.

Overcoming healthcare system barriers

Three main strategies by which different stakeholders haveovercome barriers, gaps, and confusion within the healthcare sys-tem were identified. Some patients and family members becametheir own case managers and emissaries. Another strategy was forboth patients and providers to use informal communication routes.Finally, nurse specialists played a significant role in managing care.

The patient with cancer as a case manager and emissaryOnce patients and family members learn how the healthcare

system functions, either through their own experience or throughothers, they frequently assumed responsibility for managing theirown care; many even became their own case managers. One pa-tient’s wife expressed how exhausting this can be:

“The running around between the family doctor, the hospital, andthe social security office is very difficult. I used to be a fighter butnot anymore, I gave up, the burden is so heavy and you don’t knowhow to navigate your own energy.”

FG 2, Hospital, family member

When patients were asked to whom they turn when facing ahealth problem while at home, the common answer was that theirdecision making is based on the specific problem. A typical reply tothis question is exemplified by one hospitalized patient:

“I decide to whom to turn according to the problem. If it has to dowith my surgery I refer to the surgeon. If I have a simple problemthat is not related to the oncological disease, I contact my familydoctor. When I can’t define the problem, for example, weakness, Ialso contact my family doctor. From my experience, my familydoctor is conscientious and when he doesn’t have specific knowl-edge, which he doesn’t always have, he refers me to specialists.”

FG 2, Hospital, Patient 4

During hospitalization the two healthcare systems, communityand hospital, are perceived as disconnected, and the patient be-comes the link between them.

One patient who was hospitalized a number of times com-mented about the interface between hospital and communitydoctors:

“I arrived at the hospital on my own, it was at night.. until I wasdischarged, I had no connection with my PCP since he can’t help mewhen I’m hospitalized, but showing interest sometimes helps.When I was discharged, I brought him the discharge letter. I becamethe expert in this field. I think that a doctor should receive infor-mation from a doctor, since in any case when I leave the hospital Iam in his [the PCP’s] hands.”

Interview, Hospital, Patient 1

Frequently, patients and their family members initiated contactwith PCPs, updating them so as to maintain treatment according to

oncological instructions, and to preserve channels of personalcommunication, but without expecting medical expertise.

Informal routes of communicationIn a number of instances, patients succeeded in advancing their

care through the use of personal relations, either by relying onacquaintances within the system or by establishing a good personalrapport with a provider.

In the words of one patient:

“A patient with cancer must have connections, otherwise he getslost in fairyland: go there, come back, wait, and so on.”

FG 5, Community, Patient 5

An experienced doctor shared:

“It all depends on the relationships you had before with your cancerpatient; if you had a good relationship with him, and he wasconnected to you, then afterwards, when he is in the hospital, hewill expect you to continue the connection.”

FG 5, Community, Physician 2

Doctors, nurses, administrative managers, and secretariesrepeatedly emphasized the importance of personal relations forshortening waiting times for scheduling therapy, tests, andappointments.

A PCP explained:

“It depends on whom you know. If you have personal relations witha physician then you feel you can call and contribute to the careplan, and receive information about your patient. If not, youdepend on the cancer patient and the completeness and accuracy ofinformation in the electronic medical record.”

FG 5, Community, Physician 6

A nurse in a rural clinic (kibbutz) described how personal re-lations help with care management:

“I made connection with two particular nurses, and with anotherone, relating to a patient with cancer who had passed away. Wewere all the time in touch. I had their phone numbers, and they hadmine. From the moment that they saw me, and knew who theywere talking to, they were with me, since we both wanted to suc-ceed. It’s a common goal, and we must work together e thischanged everything. When the patient died, I called the hospital totell them, and to thank them.”

Interview, Community, nurse 7

These examples demonstrate a shared model of care amonghealth care providers, based on informal personal communication,within a system that has no inherent solutions for transitioningacross health care settings.

Management of care by a hospital nurse specialistCancer patients and health care providers alike noted that the

oncological nurse specialist played a significant role in managinghealth care.

One cancer patient explained:

“With every problem that arises, I refer to the nurse at the hospital,she always solves the problem professionally and efficiently.

Once when my immune system was showing deterioration, thenurse told me to go to the hospital. I was in fact hospitalized. Thefirst thing that comes to my mind is to get to the hospital or to call.We have her cell phone number.”

FG 1, Hospital, Patient 1

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535534

A nurse specialist at the hospital described her experience andperspective:

“I shorten processes in medical committees through my connec-tions with people in the system and with other nurse specialists indifferent organizations. We exchange information and help in anyway we can, with the belief that the patient’s benefit is above allother considerations.”

FG 1, Hospital, Nurse 3

The nurse specialist’s role was considered very important; shenavigates between functionaries to ensure continuity of care, toprovide support, and to help overcome administrative andbureaucratic barriers.

Discussion

This study adds to the accumulating knowledge about conti-nuity of care in transitions between hospital and community healthcare, from the perspective of patients with cancer and their familymembers, as well as multidisciplinary health care providers acrosssettings. Our findings revealed significant deficiencies in continuityand integration, unclear division of responsibilities, ambiguousdefinitions of professional roles, and a lack of established means ofcommunication across care settings. The study findings indicatethat patients with cancer and health care providers have similarviews on the types of challenges patients encounter at the interfacebetween community and hospital care (Fig. 1).

Recently, six United States professional medical organizationsdeveloped consensus principles and standards to address gaps inthe transition of care (Snow et al., 2009). The consensus highlightsthe inherent challenges in current health systems, each with itsunique characteristics, yet all characterized by varying types of

Fig. 1. The hospitalecommunity interfacedtheoretical framework.

fragmentation. Our study highlights the efforts made by cancerpatients their providers and the solutions they find to overcomebarriers within the system in order to achieve effective care inte-gration. A common finding was that often nurse coordinators or thePCP, assumes the vital role of coordinating information and ser-vices. Yet formal coordinating roles are often not clearly defined orsystematic, and patients and family members often assumeinformal roles of care coordinators. The coordinator’s role in over-coming bureaucratic, communication, and structural gaps emergedas a significant contributor to seamless care. Additionally, informalroutes of communication (even between providers) werementioned as effective means of overcoming fragmentation in care.

Several recent studies (Campbell et al., 2010; Farrell et al., 2011;Lee et al., 2011; O’Toole et al., 2009) support our findings. A quali-tative Australian study of cancer care coordination concludes thathaving a ‘key contact’ person is essential for effective care coordi-nation, the organization of services, information sharing, and forupholding an ongoing therapeutic relationship (Walsh et al., 2011).The need for involvement of primary care providers was alsoevident from the results of our previous quantitative study, where91% of the cancer patients reported that when they have a healthproblem they consult their PCP (Shadmi et al., 2010). The findings ofthis study emphasize the importance of increased PCP involvementin advanced cancer patient care, and nurses’ critical roles in careintegration for reducing barriers to care.

Limitations

This study was limited to one district in the northern part ofIsrael and conducted in only one oncology center. In addition, thediagnoses and severity of the participants’ diseases varied and mayhave influenced their experiences with the healthcare system.

Implications for policy and practice

Findings of the current study should encourage policymakers toinitiate implementation of structural and procedural changes andredesign professional role definitions. Extending the roles of nursesand PCPs to include clinical leadership and coordinators of careacross the community and tertiary settings may promote compre-hensive and continuous care for oncology patients.

Further development of communication strategies (e.g. personalcontact, electronic communications, and scheduled meetings), aswell as linking structures (e.g. assignment of a designated patientnavigator), is crucial for optimizing quality and continuity of careand for maintaining inter-professional work, for the benefit of forcancer patients, health professionals, and the healthcare system.

Finally, the applicability of the results of this study to otherhealthcare systems cannot be ignored. While cultural and bureau-cratic systems may differ, our research adds to the growing body ofevidence, making it clear that coordination and communicationproblems should not be ignored. The interface between communityand hospital settingsmerits careful examination to determine areasof improvement.

Conflicts of interest

None declared.

Acknowledgment

This study was funded by a grant from the Israeli NationalInstitute of Health Policy and Health Services Research number R/2005/2006.

H. Admi et al. / European Journal of Oncology Nursing 17 (2013) 528e535 535

References

Babington, S., Wynne, C., Atkinson, C.H., Hickey, B.E., Abdelaal, A.S., 2003. Oncologyservice correspondence: do we communicate? Australasian Radiology 47, 50e54.

Barnes, E.A., Hanson, J., Neumann, C.M., Nekolaichuk, C.L., Bruera, E., 2000.Communication between primary care physicians and radiation oncologistsregarding patients with cancer treated with palliative radiotherapy. Journal ofClinical Oncology 18, 2902e2907.

Berendsen, A.J., Majella de Jong, G., Meyboom de Jong, B., Dekker, J.H., Schuling, J.,2009. Transition of care: experiences and preferences of patients across theprimary/secondary interfaceda qualitative study. BMC Health ServicesResearch 7, 62e69.

Campbell, C., Craig, J., Eggert, J., Bailey-Dorton, C., 2010. Implementing andmeasuring the impact of patient navigation at a comprehensive communitycancer center. Oncology Nursing Forum 37, 61e68.

Farquhar, M.C., Barclay, S.I., Earl, H., Emery, J., Crawford, R.A., 2005. Barriers toeffective communication across the primary/secondary interface: example fromthe ovarian cancer patient journey. European Journal of Cancer Care 14, 359e366.

Farrell, C., Molassiotis, A., Beaver, K., Heaven, C., 2011. Exploring the scope ofoncology specialist nurses’ practice in the UK. European Journal of OncologyNursing 15 (2), 160e166.

Glaser, B., Strauss, A., 1967. The Discovery of Grounded Theory: Strategies forQualitative Research. Aldine, New York.

Klabunde, C.N., Ambs, A., Keating, N.L., He, Y., Doucette, W.R., Tisnado, D., et al.,2009. The role of primary care physicians in cancer care. Journal of GeneralInternal Medicine 24 (9), 1029e1036.

Lee, T., Ko, I., Lee, I., Kim, E., Shin, M., Roh, S., et al., 2011. Effects of nurse navigatorson health outcomes of cancer patients. Cancer Nursing 34 (5), 376e384.

Lincoln, Y., Guba, E., 1985. Naturalistic Inquiry. Sage, Beverly Hills.Lingard, L., Albert, M., Levinson, W., 2008. Grounded theory, mixed methods, and

action research. British Medical Journal 337, 459e461.

O’Toole, E., Step, M.M., Engelhardt, K., Lewis, S., Rose, J.H., 2009. The role of primarycare physicians in advanced cancer care: perspectives of older patients andtheir oncologists. Journal of the American Geriatrics Society 57 (Suppl. 2),S265eS268.

Sada, Y.H., Street, R.L., Singh, H., Shada, R.E., Naik, A.D., 2011. Primary care andcommunication in shared cancer care: a qualitative study. American Journal ofManaged Care 17 (4), 259e265.

Shadmi, E., Admi, H., Ungar, L., Naveh, N., Muller, E., Kaffman, M., et al., 2010.Cancer care at the hospitalecommunity interface: perspectives of patientsfrom different cultural and ethnic groups. Patient Education and Counseling 79,106e111.

Smeenk, F.W., de Witte, L.P., Nooyen, I.W., Crebolder, H.F., 2000. Effects of trans-mural care on coordination and continuity of care. Patient Education andCounseling 41, 73e81.

Snow, V., Beck, D., Budnitz, T., Miller, D.C., Potter, J., Wears, R.L., et al., 2009. Tran-sitions of care consensus policy statement: American College of Physicians-Society of General Internal Medicine-Society of Hospital Medicine-AmericanGeriatrics Society-American College of Emergency-Physicians Society ofAcademic Emergency Medicine. Journal of General Internal Medicine 24 (8),971e976.

Stalhammar, J., Holmberg, L., Svardsudd, K., Tibblin, G., 1998. Written communica-tion from specialists to general practitioners in cancer caredwhat are theexpectations and how are they met? Scandinavian Journal of Primary HealthCare 16, 154e159.

Strauss, A., Corbin, J., 2008. Basics of Qualitative Research: Grounded TheoryProcedures and Techniques. Sage, London.

Walsh, J., Harrison, J.D., Young, J.M., Butow, P.N., Solomon, M.J., Lindy, M., 2010.What are the current barriers to effective cancer care coordination? A quali-tative study. BMC Health Services Research 10, 132e139.

Walsh, J., Young, J.M., Harrison, J.D., Butow, P.N., Solomon, M.J., Masya, L., et al., 2011.What is important in cancer care coordination? A qualitative investigation.European Journal of Cancer Care 20, 220e227.