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    Hospitalecommunity interface: A qualitative study on patients with

    cancer 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

    a Nursing Division, Rambam Health Care Campus, P.O.B. 9602, Haifa 31096, Israelb Department of Family Medicine, Clalit Health Services, Haifa District, Israelc Ruth and Bruce Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israeld Department 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 patients

    Oncology health care providers

    Health care system barriers

    Hospitalecommunity interface

    Qualitative design

    Care continuity

    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 view

    of patients with cancer, their families, and health care providers on both sides of the interface i.e., the

    community 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 in

    10 focus groups. Based on the grounded theory approach, theoretical sampling and constant comparative

    analyses were used.

    Results:Two major concepts emerged: ambivalence and confusionand overcoming healthcare system

    barriers.Ambiguity was expressed regarding the roles of health care providers in the community and inthe hospital. We identied three main strategies by which these patients and their families overcame

    barriers within the system: patients and families became their own case managers; patients and health

    care providers used informal routes of communication; and nurse specialists played a signicant role in

    managing care.

    Conclusions: The heavy reliance on informal routes of communication and integration by patients and

    providers emphasizes the urgent need for change in order to improve coordinating mechanisms for

    hospitalecommunity oncologic care.

    2013 Elsevier Ltd. All rights reserved.

    Introduction

    Patients with cancer face a wide array of challenges in the

    course of their care. In addition to dealing with disease symptoms,emotional stress, social and nancial pressures, and self-

    management needs, patients often encounter a disarrayed

    healthcare system and are charged with care navigation and

    bureaucratic challenges. Care of patients with cancer is typically

    provided across several settings, with a variety of providers

    delivering various types of care at different stages, often with no

    clear understanding of each others role(Stalhammar et al., 1998).

    The difculties encountered by patients and their families in

    navigating complex and fragmented healthcare systems have

    been well documented in various healthcare systems worldwide(Berendsen et al., 2009;Farquhar et al., 2005). While barriers to

    cancer 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 achieve

    seamless cancer care.

    Background

    Uncertainty about the division of responsibility, poor commu-

    nication among health care providers, and inadequate transfer of

    information between hospital-based physicians and primary care

    * Corresponding author. Tel.:972 4 8542395; fax: 972 4 8541696.

    E-mail addresses: [email protected] (H. Admi), [email protected],

    [email protected] (S. Reis).

    Contents lists available at SciVerse ScienceDirect

    European Journal of Oncology Nursing

    j o u r n a l h o m e p a g e : w w w . e l s e v i e r .c o m / l o c a t e / e j o n

    1462-3889/$ e see front matter 2013 Elsevier Ltd. All rights reserved.

    http://dx.doi.org/10.1016/j.ejon.2013.02.005

    European Journal of Oncology Nursing 17 (2013) 528e535

    mailto:[email protected]:[email protected]:[email protected]://www.sciencedirect.com/science/journal/14623889http://www.elsevier.com/locate/ejonhttp://dx.doi.org/10.1016/j.ejon.2013.02.005http://dx.doi.org/10.1016/j.ejon.2013.02.005http://dx.doi.org/10.1016/j.ejon.2013.02.005http://dx.doi.org/10.1016/j.ejon.2013.02.005http://dx.doi.org/10.1016/j.ejon.2013.02.005http://dx.doi.org/10.1016/j.ejon.2013.02.005http://www.elsevier.com/locate/ejonhttp://www.sciencedirect.com/science/journal/14623889http://crossmark.crossref.org/dialog/?doi=10.1016/j.ejon.2013.02.005&domain=pdfmailto:[email protected]:[email protected]:[email protected]
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    physicians (PCPs), constitute preventable breaches in care

    (Farquhar et al., 2005;Sada et al., 2011). A recent qualitative study

    identied six barriers to effective cancer care coordination:

    confusion regarding roles and responsibilities of the health care

    team, lack of multidisciplinary team meetings, lack of continuity in

    transitioning across care settings, inadequate communication be-

    tween specialists and primary care providers, inequitable access to

    health services, and scarce professional resources (Walsh et al.,

    2010). In addition, several studies have addressed communication

    gaps, uncertainty about divisions of responsibility, and differences

    in professional strategies of cancer management between PCPs and

    oncologists (Babington et al., 2003; Barnes et al., 2000; Smeenk

    et al., 2000;Klabunde et al., 2009).

    While current literature acknowledges the deciencies in cancer

    care integration, little is known on howpatients and their providers

    manage their care across providers and care settings. This study

    aims to ll this gap by examining the experiences of patients, their

    families, and health care providers from community as well as

    hospital settings.

    Methods

    This qualitative study is part of a larger study aimed at investi-

    gating the factors inuencing the nature and quality of cancer care

    at the hospitalecommunity interface (Shadmi et al., 2010). The

    theoretical orientation for this qualitative study was based on

    grounded theory, which develops a theory about phenomena of

    interest from a corpus of data. Grounded theory is a complex iter-

    ative process consisting of a series of steps, which after careful data

    analysis, 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 for

    the purpose of exploring their experiences with care provided in

    both the hospital and the community care settings. The settings for

    this study included oncology units and day care clinics in both

    hospital and primary care clinics.

    The eligibility criteria of patients and their family members

    were: (1) a diagnosis with any type of cancer, (2) over 18 years of

    age, (3) able to speak and understand Hebrew (4) agreement to

    participate in focus groups or one-on-one interviews. Patients were

    excluded if they met hospice care criteria or end-stage disease to

    protect them from unwarranted emotional and physical exhaustion

    at this point in their lives.

    The health care staff participants were selected for their ability

    to conrm or challenge the emerging theory. They represented amultidisciplinary team from the community and the hospital

    health care sites. They all had extensive clinical and managerial

    experience in the eld of oncology and agreed to participate in

    focus groups or personal interviews. All interviewees were willing

    to share from experiences within their context. Individual in-

    terviews and focus groups were used in this study to increase the

    probability of credible ndings and interpretations (Lincoln and

    Guba, 1985).

    Cycles of simultaneous data collection and analysis were

    conducted where analysis informed the next cycle of data

    collection. Sample sizes were determined based on ongoing data

    collection, analysis and renement. Recruitment of participants

    continued until data had reached saturation (Lingard et al.,

    2008).

    Data collection

    Five focus groups that included patients and their families were

    conducted. Each group comprisedve to eight members. Four focus

    groups were conducted within a hospital setting among hospital-

    ized and day care patients, and one within the community in a

    primary care clinic. All potential participants were approached and

    recruited voluntarily by local health care personnel. Patients and

    their family members were asked about their community, hospital,

    and transitional care experiences.

    Triangulation technique is used to improve credibility of nd-

    ings and interpretations (Lincoln and Guba, 1985). In this study we

    used three modes of triangulation: multiple and different modes of

    sources, methods and investigators. A mixed data collection

    approach allowed for both proliferation of ideas (focus group) and

    condentiality of in-depth personal interviews. Depth of perspec-

    tive was made possible by involving several investigators from

    different disciplines; their examination of the ndings as a group

    helped 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 topic

    guided open-ended questions. For the study purposes we devel-

    oped three sets of interviewguides, each oneaddressed to a specic

    group 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 the

    different participants. Examples of questions to patients included:

    What do you do when you are at home and realize you have a

    health problem? Who is managing your care at present? How

    would 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 specic probes were pre-designed for subsequent

    stages of the interview. Health care providers were asked: How do

    you view the relationships at present between the PCP, oncologist,

    and oncology nurse? In your opinion, what should be the PCPs

    involvement during hospitalization of oncology patients under

    their responsibility? What obstacles/difculties do you face in the

    communityehospital interface at present? In your opinion, what

    should 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 reviewed

    line by line to search for coding, themes, concepts, and propositions

    that emerged from the data.

    Four evaluative criteria (credibility, transferability, depend-

    ability, and conrmability) for judging the rigor of qualitative in-

    quiries were applied to increase trustworthiness of the analysis

    process (Lincoln and Guba, 1985). To increase credible ndings, all

    transcribed interviews were analyzed independently by at least

    three of the researchers, followed by peer debrieng. Reections on

    thedata and interpretations were discussed until consensus and

    saturation of emerging themes were achieved. Theoretical sam-

    pling continued, and the topical guide for interviews and focus

    groups was modi

    ed after initial analysis.

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    Ethical considerations

    Study approval was obtained from the institutional review

    board of Rambam Health Care Campus. Informed consent was ob-

    tained from participants prior to interviews or participation in a

    focus group. To assure condentiality, 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 health

    care 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 with

    eight PCPs; personal interviews were conducted with ve oncolo-

    gists in hospital and community settings. Sixteen nurses (head

    nurses, oncology nurse specialists and senior nurses at the hospital;

    community urban and rural nurses) participated in the study; 13

    participated in two focus groups and three participated in personal

    in-depth interviews. Five hospital social workers participated in a

    focus group. Six administrators in the eld of oncology were also

    included.

    Two major categories emerged from analysis of the patient andprovider transcripts: Ambivalence and confusion and over-

    coming healthcare system barriers.

    Ambivalence and confusion

    Perceptions of patients and family members

    The attitudes of patients toward providers reected the gap

    between patient needs and expectations of the healthcare system

    and actual experience. When relating to the PCP, patients often

    shared different experiences. Patients expected their PCP to show

    personal interest in them when they get sick and while hospital-

    ized. One patient, for example, shared his expectations from

    the PCP:

    I think the PCP needs to be involved and show interest. When you

    nd 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 and

    not wait for my phone call. He doesnt callto ask how I feel and isnt

    interested 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 I

    feel I am his patient every minute.

    FG 3, Hospital, Patient 2

    Table 1

    Participants (patients, families and health care providers) according to data collection methods and interviewers.

    1.1 Patients & families

    Group no. No. of participants Participant characteristics Site Interviewer/Researchera

    Focus groups

    1 6 Patients & familiesb Hospital 1, 2

    2 8 Patients & families Hospital 1, 2

    3 5 Patients Hospital 7

    4 7 Patients & families Hospital 7

    5 8 Patients Community 3, 5

    Total: 34 patients & familiesIn-depth personal interviews

    1 1 Patient Community 6 MD

    2 1 Patient Community 6 MD

    3 1 Patient Community 6 MD

    Total: 3 Patients

    Total: 37 patients & families

    1.2 Health care providers

    Group no. No. of participants Participant characteristics Site Interviewer/Researchera

    Focus groups

    1 7 Oncology senior nurses Hospital 1, 2

    2 6 Oncology nurse specialists Hospital 1, 2

    3 5 Oncology social workers Hospital 1, 2

    4 5 Oncology administrative assistants Hospital 1, 2

    5 8 Primary care physicians Community 3, 5

    Total: 31 health care providersIn-depth personal interviews

    1 1 Medical director oncology division Hospital 1, 2 RN, RN

    2 1 Medical director radiation unit Hospital 7, 2 RN, RN

    3 1 Director of medical review (Physician) Hospital 1, 2 RN, RN

    4 1 Medical review (Nurse) Hospital 1, 2 RN, RN

    5 1 District medical director of oncology Community 4, 5 MD, MD

    6 1 District medical director, HMO Community 4,5 MD, MD

    7 1 Head nurse, rural clinic Community 3 SW

    8 1 Head nurse, urban clinic Community 3 SW

    9 1 Administrative assistant, urban clinic Community 3 SW

    Total: 9 health care providers

    Total: 40 health care providers

    a Interviewer/Researcher: 1. RN, PhD: Director of Nursing, Rambam Health Care Campus (RHCC), Haifa. 2. RN, MA: Director of Oncology Nursing Division, RHCC, Haifa. 3.

    SW, PhD: Social Worker, Department of Family Medicine, HMO, Haifa. 4e6. MD; Department of Family Medicine, HMO & Ruth and Bruce Rappaport, Faculty of Medicine,

    Technion-Israel Institute of Technology, Haifa. 7. RN, PhD: Nurse Researcher, RN, Department of Nursing, University of Haifa.b

    Overall,

    ve spouses participated in three focus groups.

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    An issue that was raised by the some of the patients was that the

    PCPs knowledge about oncology diseases was inadequate:

    There is no point in turning to the primary care team. They know

    nothing about oncology patients. My PCP doesnt know anything

    about my diseases. Even when I ask him to send me to the ER he

    sends me to a central community clinic.

    FG 1, Hospital, Patient 1

    Another patient stated how he knows to differentiate between

    expectations from the PCP and the oncologist:

    If its a simple matter that is not related directly to my oncologic

    disease I consult my PCP. If for example I feel weakness Illrst turn

    to my PCP. Based on my experience, my PCP is reliable and if he

    doesnt know what is the reason for my complaint he will always

    send me to a specialist doctor.

    FG 2, Hospital, Patient 1

    Patients were frustrated with having to nd their way between

    the various providers; they were stressed by the bureaucratic

    requirement to refer to their PCP before any specialist. In addition,

    patients struggled with ambivalence; although frustrated because

    of the lack of availability of their PCP, they still wanted closer

    contact with them. In the words of one of the hospitalized

    participants:

    When you have a problem you must go directly to the emergency

    room or to the oncologist. What can the family physician do? He is

    not available. He is in the community clinic only twice a week. He is

    my doctor, he knows me personally for years and he cares about

    me. I can call him and sometimes he calls.

    FG 3, Hospital, Patient 2

    Over time, patients with cancer learn what to expect from their

    PCP. They view the PCP as their personal physician who knows

    them intimately, is a resource for general basic health care, and

    sometimes serves as an administrator. Patients also becamefamiliar with the rules and regulations of the healthcare system. In

    the following example, one patient expressed frustration that her

    family doctor had to take on the role of administrator at the

    expense of providing quality treatment.

    It really bothers me that she has to be an administrator, because

    that takes away from the time she has to deal with important

    matters. She shouldght for getting the medications I need. She has

    to 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 time

    of a high quality doctor.

    FG 5, Community, Patient 2

    Patients accorded great importance to maintaining continuity of

    care 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 the

    hospital. Ive never heard of such. I havent heard of a physician in

    the hospital calling a family doctor. This doesnt happen.

    FG 5, Community, Patient 1

    Most patients interviewed expressed a desire for their family

    doctor to take on the role of an integrator of care. One woman

    explained the rationale behind this:

    My expectations from my family doctor are that she will be an

    integrator for the disease. Theres an oncologist, a hematologist, a

    pain specialist. From my side, its totally acceptable that she (my

    family doctor) should tell me that this is something she does not

    know. She knows me not only in regard to the illness, but also from

    my personality. She sees the whole picture. She sees me as a

    whole human being.

    FG5, Community, Patient 4

    Although patients understood the limitations of their PCP, they

    also expressed expectations for personal interest and communi-

    cation that were sometimes unfullled. This was exemplied by

    their repeated expectation that the PCP would call or visit during

    the hospitalization.

    Our ndings revealed disappointment among patients. They felt

    they were at the mercy of a bureaucratic system. There was no

    overall integrated plan for their management nor was there con-

    tinuity of care, resulting in wasted time and energy. Patients were

    aware of health care providers difculties, such as overload and

    high turnover among oncology specialists, lack of oncologic

    expertise among family doctors, and bureaucratic constraints.

    Nevertheless, most of these patients were not sympathetic to the

    limitations of the healthcare system, and expressed bitterness and

    frustration. They expected guidance and coordination, ongoing

    communication between providers, and to be treated as whole

    human beings. Most patients looked to the family doctor to fulll

    the role of case manager and coordinator of care, advocating on

    their behalf within the healthcare system, and serving as the pri-

    mary advocate for personal and medical problems.

    Perceptions held by community-based providers

    Community-based providers (policymakers, PCPs, nurses, and

    oncologists) acknowledged difculties in communication amongst

    themselves, as well as vis-a-vis hospital providers. This was espe-

    cially striking against a backdrop of conviction that communication

    was 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 case manager,i.e., a coordinator of all providers, the patients advocate, and the

    quintessential connection throughout all stages of treatment, and

    across all care sites.

    A medical administrator of the regional health maintenance

    organization summarized the situation:

    In the end, the responsibility for the oncology patient is on the

    family doctor.

    Interview, Community, Medical director 6

    A PCP described her view of her role as a case manager and

    patient advocate:

    I always say that as their doctor, I will accompany them, and it

    doesnt matter which station in oncology they reach, we continue

    to be together; that means that there is no disconnect between the

    patient and myself. This is something that occurs at one point in

    time during a patients lifetime, during which I will stay by him; I

    continue to be his doctor.

    FG 5, Community, Physician 1

    Interviewees differed in their perceptions of the reasons and

    responsible agents for fragmentation in the healthcare system. As

    expected, providersroles affected their views. For instance, in the

    words of the head of the oncology service in the community:

    Oncologists suffer greatly from lack of time. Therefore family

    doctors must conduct follow-up of oncology patients; only that

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    healthcare system as their experience with cancer care unfolds.

    They expressed anger, confusion, and frustration at being tossed

    around within the constraints of the healthcare system. In contrast,

    they conveyed appreciation, respect, and gratitude toward health

    care providers.

    Among both community and hospital providers the general un-

    certainty concerning the essence of their roles and responsibilities is

    compounded by the absence of established communication pro-

    cesses. Health care providers must deal with administrative and

    organizational matters beyond their professional expertise.

    Overcoming healthcare system barriers

    Three main strategies by which different stakeholders have

    overcome barriers, gaps, and confusion within the healthcare sys-

    tem were identied. Some patients and family members became

    their own case managers and emissaries. Another strategy was for

    both patients and providers to use informal communication routes.

    Finally, nurse specialists played a signicant role in managing care.

    The patient with cancer as a case manager and emissary

    Once patients and family members learn how the healthcare

    system functions, either through their own experience or through

    others, they frequently assumed responsibility for managing their

    own care; many even became their own case managers. One pa-

    tients wife expressed how exhausting this can be:

    The running around between the family doctor, the hospital, and

    the social security ofce is very difcult. I used to be a ghter but

    not anymore, I gave up, the burden is so heavy and you dont know

    how to navigate your own energy.

    FG 2, Hospital, family member

    When patients were asked to whom they turn when facing a

    health problem while at home, the common answer was that their

    decision making is based on the specic problem. A typical reply tothis question is exemplied by one hospitalized patient:

    I decide to whom to turn according to the problem. If it has to do

    with my surgery I refer to the surgeon. If I have a simple problem

    that is not related to the oncological disease, I contact my family

    doctor. When I cant dene the problem, for example, weakness, I

    also contact my family doctor. From my experience, my family

    doctor is conscientious and when he doesnt have specic knowl-

    edge, which he doesnt always have, he refers me to specialists.

    FG 2, Hospital, Patient 4

    During hospitalization the two healthcare systems, community

    and 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 community

    doctors:

    I arrived at the hospital on my own, it was at night.. until I was

    discharged, I had no connection with my PCP since he cant help me

    when Im hospitalized, but showing interest sometimes helps.

    When I wasdischarged, I brought himthe discharge letter. I became

    the expert in this eld. I think that a doctor should receive infor-

    mation from a doctor, since in any case when I leave the hospital I

    am in his [the PCPs] hands.

    Interview, Hospital, Patient 1

    Frequently, patients and their family members initiated contact

    with PCPs, updating them so as to maintain treatment according to

    oncological instructions, and to preserve channels of personal

    communication, but without expecting medical expertise.

    Informal routes of communication

    In a number of instances, patients succeeded in advancing their

    care through the use of personal relations, either by relying on

    acquaintances within the system or by establishing a good personal

    rapport with a provider.

    In the words of one patient:

    A patient with cancer must have connections, otherwise he gets

    lost 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 youhad before with your cancer

    patient; if you had a good relationship with him, and he was

    connected to you, then afterwards, when he is in the hospital, he

    will expect you to continue the connection.

    FG 5, Community, Physician 2

    Doctors, nurses, administrative managers, and secretaries

    repeatedly emphasized the importance of personal relations for

    shortening waiting times for scheduling therapy, tests, and

    appointments.

    A PCP explained:

    It depends on whom you know. If you have personal relations with

    a physician then you feel you can call and contribute to the care

    plan, and receive information about your patient. If not, you

    depend on thecancerpatient andthe completeness and accuracy of

    information 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 another

    one, relating to a patient with cancer who had passed away. We

    were all the time in touch. I had their phone numbers, and they had

    mine. From the moment that they saw me, and knew who they

    were talking to, they were with me, since we both wanted to suc-

    ceed. Its a common goal, and we must work together e this

    changed everything. When the patient died, I called the hospital to

    tell them, and to thank them.

    Interview, Community, nurse 7

    These examples demonstrate a shared model of care among

    health care providers, based on informal personal communication,

    within a system that has no inherent solutions for transitioning

    across health care settings.

    Management of care by a hospital nurse specialist

    Cancer patients and health care providers alike noted that the

    oncological nurse specialist played a signicant role in managing

    health 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 efciently.

    Once when my immune system was showing deterioration, the

    nurse told me to go to the hospital. I was in fact hospitalized. The

    rst 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

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    A nurse specialist at the hospital described her experience and

    perspective:

    I shorten processes in medical committees through my connec-

    tions with people in the system and with other nurse specialists in

    different organizations. We exchange information and help in any

    way we can, with the belief that the patients benet is above all

    other considerations.

    FG 1, Hospital, Nurse 3

    The nurse specialists role was considered very important; she

    navigates between functionaries to ensure continuity of care, to

    provide support, and to help overcome administrative and

    bureaucratic barriers.

    Discussion

    This study adds to the accumulating knowledge about conti-

    nuity of care in transitions between hospital and community health

    care, from the perspective of patients with cancer and their family

    members, as well as multidisciplinary health care providers across

    settings. Our ndings revealed signicant deciencies in continuityand integration, unclear division of responsibilities, ambiguous

    denitions of professional roles, and a lack of established means of

    communication across care settings. The study ndings indicate

    that patients with cancer and health care providers have similar

    views on the types of challenges patients encounter at the interface

    between community and hospital care (Fig. 1).

    Recently, six United States professional medical organizations

    developed consensus principles and standards to address gaps in

    the transition of care (Snow et al., 2009). The consensus highlights

    the inherent challenges in current health systems, each with its

    unique characteristics, yet all characterized by varying types of

    fragmentation. Our study highlights the efforts made by cancer

    patients their providers and the solutions they nd to overcome

    barriers within the system in order to achieve effective care inte-

    gration. A common nding was that often nurse coordinators or the

    PCP, assumes the vital role of coordinating information and ser-

    vices. Yet formal coordinating roles are often not clearly dened or

    systematic, and patients and family members often assume

    informal roles of care coordinators. The coordinators role in over-

    coming bureaucratic, communication, and structural gaps emerged

    as a signicant contributor to seamless care. Additionally, informal

    routes of communication (even between providers) were

    mentioned as effective means of overcoming fragmentation in care.

    Several recent studies (Campbell et al., 2010;Farrell et al., 2011;

    Lee et al., 2011;OToole et al., 2009) support our ndings. A quali-

    tative Australian study of cancer care coordination concludes that

    having a key contactperson is essential for effective care coordi-

    nation, the organization of services, information sharing, and for

    upholding an ongoing therapeutic relationship (Walsh et al., 2011).

    The need for involvement of primary care providers was also

    evident from the results of our previous quantitative study, where

    91% of the cancer patients reported that when they have a health

    problem they consult their PCP (Shadmi et al., 2010). The ndings of

    this study emphasize the importance of increased PCP involvementin advanced cancer patient care, and nurses critical roles in care

    integration for reducing barriers to care.

    Limitations

    This study was limited to one district in the northern part of

    Israel and conducted in only one oncology center. In addition, the

    diagnoses and severity of the participantsdiseases varied and may

    have inuenced their experiences with the healthcare system.

    Implications for policy and practice

    Findings of the current study should encourage policymakers to

    initiate implementation of structural and procedural changes and

    redesign professional role denitions. Extending the roles of nurses

    and PCPs to include clinical leadership and coordinators of care

    across the community and tertiary settings may promote compre-

    hensive and continuous care for oncology patients.

    Further development of communication strategies (e.g. personal

    contact, electronic communications, and scheduled meetings), as

    well as linking structures (e.g. assignment of a designated patient

    navigator), is crucial for optimizing quality and continuity of care

    and for maintaining inter-professional work, for the benet of for

    cancer patients, health professionals, and the healthcare system.

    Finally, the applicability of the results of this study to other

    healthcare systems cannot be ignored. While cultural and bureau-

    cratic systems may differ, our research adds to the growing body of

    evidence, making it clear that coordination and communication

    problems should notbe ignored. The interface between community

    and hospital settings merits careful examination to determine areas

    of improvement.

    Conicts of interest

    None declared.

    Acknowledgment

    This study was funded by a grant from the Israeli National

    Institute of Health Policy and Health Services Research number R/

    2005/2006.Fig. 1. The hospitale

    community interfaced

    theoretical framework.

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

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    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., 20 05. Barriers toeffective communication across the primary/secondary interface: example fromtheovarian 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.

    OToole, 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,

    106e

    111.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.

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