European Journal of Oncology Nursing 17 (2013) 528e535

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European Journal of Oncology Nursing

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

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, Israel Department of Family Medicine, Clalit Health Services, Haifa District, Israel Ruth and Bruce Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel d Department of Nursing, Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel e Faculty Development Unit, Bar Ilan University, Faculty of Medicine in the Galilee, Safed, Israel
b c

a b s t r a c t
Keywords: Cancer patients Oncology health care providers Health care system barriers Hospitalecommunity interface Qualitative design Care continuity

Background: Patients with cancer must deal with complex and fragmented healthcare systems in addition 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 multidisciplinary 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 confusion and overcoming healthcare system barriers. Ambiguity was expressed regarding the roles of health care providers in the community and in the 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 selfmanagement 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 patients and their providers overcome system barriers to achieve seamless cancer care. Background

* Corresponding author. Tel.: 972 4 8542395; fax: 972 4 8541696. E-mail addresses: h_admi@rambam.health.gov.il (H. Admi), reisshm@biu.ac.il, reis@netvision.net.il (S. Reis). 1462-3889/$ e see front matter 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.02.005

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

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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 between 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 how patients 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 investigating 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 iterative 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 participants, which included patients, their family members, and multidisciplinary 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 a multidisciplinary 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 interviews 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 comprised ve to eight members. Four focus groups were conducted within a hospital setting among hospitalized 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 ndings 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 perspective 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. Focus groups 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 developed three sets of interview guides, each one addressed to a specic group of participants from both the community and the hospital: patients and their families, health care personnel, and policy decision makers. Each interview guide included questions in accordance 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 open discussion 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 audiorecorded and transcribed verbatim. Analysis Based on the grounded theory approach, purposive sampling and 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, dependability, and conrmability) for judging the rigor of qualitative inquiries 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 the data and interpretations were discussed until consensus and saturation of emerging themes were achieved. Theoretical sampling continued, and the topical guide for interviews and focus groups was modied 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 obtained from participants prior to interviews or participation in a focus group. To assure condentiality, all personal identifying information 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 administrative assistances) participated in this study (Table 1). Thirteen physicians participated in the study. A focus group was conducted with eight PCPs; personal interviews were conducted with ve oncologists 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 and provider transcripts: Ambivalence and confusion and overcoming 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 hospitalized. 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 call to 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 Patients & familiesb Patients & families Patients Patients & families Patients Site Hospital Hospital Hospital Hospital Community Interviewer/Researchera 1, 2 1, 2 7 7 3, 5

Focus groups 1 6 2 8 3 5 4 7 5 8 Total: 34 patients & families In-depth personal interviews 1 1 2 1 3 1 Total: 3 Patients Total: 37 patients & families 1.2 Health care providers Group no. No. of participants

Patient Patient Patient

Community Community Community

6 MD 6 MD 6 MD

Participant characteristics Oncology senior nurses Oncology nurse specialists Oncology social workers Oncology administrative assistants Primary care physicians

Site Hospital Hospital Hospital Hospital Community

Interviewer/Researchera 1, 1, 1, 1, 3, 2 2 2 2 5

Focus groups 1 7 2 6 3 5 4 5 5 8 Total: 31 health care providers In-depth personal interviews 1 1 2 1 3 1 4 1 5 1 6 1 7 1 8 1 9 1 Total: 9 health care providers Total: 40 health care providers

Medical director oncology division Medical director radiation unit Director of medical review (Physician) Medical review (Nurse) District medical director of oncology District medical director, HMO Head nurse, rural clinic Head nurse, urban clinic Administrative assistant, urban clinic

Hospital Hospital Hospital Hospital Community Community Community Community Community

1, 2 RN, RN 7, 2 RN, RN 1, 2 RN, RN 1, 2 RN, RN 4, 5 MD, MD 4,5 MD, MD 3 SW 3 SW 3 SW

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 Ill rst 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 became familiar 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 should ght 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 the interface. 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. FG 5, Community, Patient 4 Although patients understood the limitations of their PCP, they also expressed expectations for personal interest and communication 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 continuity 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 primary 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 especially striking against a backdrop of conviction that communication was essential for maintaining care continuity and addressing patient 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, providers roles 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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family doctors do not have the necessary background, and only few of them are capable of managing such follow-up. Interview, Community, Medical director 5 PCPs noted difculties in maintaining communication with patients due to specic factors relating patients with cancer, a lack of cooperation from hospital and community oncologists, and their own constraints such as lack of time, overload of administrative tasks, and lack of knowledge in oncology. In the words of one: There are some patients, who, immediately after diagnosis, spend all their time in the hospital; we hardly see them, and we are really only in the role of a clerk. FG 5, Community, Physician 2 One PCP described her experience in dealing with hospitalbased staff: It never happened that they called me from the hospital. I received written letters. A call to ask me about patients with cancer, it hasnt happened. It seems to me that they ignore us. The relationship is in one direction. If we need to, we call, and they act like theyre doing us a favor. Im surprised that oncologists or social workers from the unit dont want to call the PCP and ask for information about our cancer patients, how they are managing, or to ask for help to talk to them (patients), for instance. FG 5, Community, Physician 3 Like PCPs, primary care nurses also described the lack of communication with the hospital system. Information transfer generally consisted of a hospital discharge letter delivered by the patient. Many times patients were hospitalized without the community health care staff ever knowing about it. They claimed that no mechanism for routine updating between health care providers existed, and in most situations, the doctor and nurse at the community clinic would nd out about a hospitalization directly from the patient or his or her family. Primary care nurses are in charge of nursing care for the PCPs diverse population. They referred to cancer patients as a group with special needs, deserving priority and particular attention, and considered the hospital and oncologists as the main providers of their patients care. While nurses in urban settings noted that their contact with patients was primarily regarding technical matters and basic nursing procedures, nurses in rural areas, such as kibbutzim, described their role as being more involved. A nurse in an urban primary care clinic described her relationship with patients with cancer: They arrive at the clinic needing blood tests. I try not to have them wait too long with the other patients. I am a person they can turn to. They know that I am interested in their well-being. Im in contact with them, but they dont really need me. Interview, Community, Nurse 8 In the words of a nurse who currently works on a kibbutz, but had worked in the past in a hospital oncology unit: . I initiated connections with nurses (in the hospital), we exchanged telephone numbers. Once a channel of communication opens up, its possible to call and to ask if something is unclear in the discharge recommendations. Because of the communication created, one patient was discharged from the hospital earlier than planned. Staff nurses say to me, Oh no, he has cancer. I took this to a different place. I know that cancer is now a chronic illness. I have an advantage in accompanying them. I have visited my patients in hospitals and saved people a lot of travelling. Interview, Community, Nurse 7

This is an illuminating example of a community nurse with extensive oncology experience who recognizes the importance of continuity of care, and proactively shapes her role. In this way, she provides a testament to the possibility of positive change. In general, community providers expressed the need for more reciprocity and collaboration across the interface and amongst themselves to foster greater continuity of care. They believe that communication between the various providers, and with patients, is essential; it should not be left to individual initiative, but rather be planned, established, and institutionalized. Perceptions held by hospital providers Hospital providers noted that steps to improve efciency in the health maintenance organization have had negative effects on patients and on health care providers: waiting times to receive specialized treatment (i.e. chemotherapy) have increased; patients and their families feel trapped within a bureaucratic entanglement; and the PCPs authority in dealing with cancer has been restricted considerably. Members of the hospital staff expressed frustration with their role as mediator between patients and the bureaucratic system. We asked the hospital oncology staff about their perceptions of the role of PCPs. From the hospital staffs perspective, PCPs are perceived as lacking oncology expertise, as being overloaded with patients, and having limited interest in their hospitalized patients. As a result, they avoid taking charge and unnecessarily refer patients to the hospital. One oncologist explained: They prefer to send their cancer patients to the hospital even for minor reasons; this overloads the system and increases patient suffering. The primary care physician is present but absent. Interview, Hospital, Physician 2 A hospital oncology nurse emphasized patients preference to be treated by the tertiary care providers: There is a feeling that the cancer patient doesnt know who to turn to. Cancer patients often call us with questions, rather than ask nurses or doctors in their primary care clinic. FG 2, Hospital, Nurse 2 The hospital oncology staff noted that PCPs do not play a signicant role in the care of their patients. Oncologists expect the PCPs to read the discharge letter and to contact the oncologist if there is a problem. The head of the oncology department reected on the current communityehospital interface: There is currently no interaction between the two systems. The connection is from the oncologist by means of the discharge letter. The ideal model would be for the PCP to manage care and for the oncologist to serve as a consultant. Interview, Hospital, Physician 1 There are gaps in coordination of care and one-way communication channels from the specialist to the primary caregiver. This situation, they feel, adversely affects patient outcomes, the work of health care providers, and the healthcare system in general. In summary, a general uncertainty of roles and ambiguity around responsibilities prevails in oncology care among all parties involveddpatients, family members, and community and hospital providers. Findings from this study suggest that patients with cancer and their families acquire strategic skills for navigating the

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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 uncertainty concerning the essence of their roles and responsibilities is compounded by the absence of established communication processes. Health care providers must deal with administrative and organizational matters beyond their professional expertise.

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 you had 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 the cancer patient and the 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 relations 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 succeed. 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

Overcoming healthcare system barriers Three main strategies by which different stakeholders have overcome barriers, gaps, and confusion within the healthcare system 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 patients 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 to this 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 knowledge, 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 becomes the link between them. One patient who was hospitalized a number of times commented 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 was discharged, I brought him the discharge letter. I became the expert in this eld. I think that a doctor should receive information 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

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A nurse specialist at the hospital described her experience and perspective: I shorten processes in medical committees through my connections 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 continuity 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 continuity and 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 integration. A common nding was that often nurse coordinators or the PCP, assumes the vital role of coordinating information and services. 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 overcoming 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 qualitative Australian study of cancer care coordination concludes that having a key contact person is essential for effective care coordination, 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 involvement in 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 participants diseases 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 comprehensive 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 bureaucratic systems may differ, our research adds to the growing body of evidence, making it clear that coordination and communication problems should not be 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 hospitalecommunity interfacedtheoretical framework.

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