Health care professionals' perspectives of the experiences of family caregivers during in-patient cancer care.

556179 research-article2014

JFNXXX10.1177/1074840714556179Journal of Family NursingEkstedt et al.

Article

Health Care Professionals’ Perspectives of the Experiences of Family Caregivers During In-Patient Cancer Care

Journal of Family Nursing 2014, Vol. 20(4) 462–486 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840714556179 jfn.sagepub.com

Mirjam Ekstedt, RN, PhD1,2, Una Stenberg, MSW1, Mariann Olsson, MSW, PhD3,4, and Cornelia M. Ruland, RN, PhD1,5

Abstract Being a family member of a patient who is being treated in an acute care setting for cancer often involves a number of challenges. Our study describes Norwegian cancer care health professionals’ perceptions of family members who served as family caregivers (FCs) and their need for support during the in-hospital cancer treatment of their ill family member. Focus group discussions were conducted with a multidisciplinary team of 24 experienced social workers, physicians, and nurses who were closely involved in the patients’ in-hospital cancer treatment and care. Drawing on qualitative hermeneutic analysis, four main themes describe health professionals’ perceptions of FCs during the patient’s in-hospital cancer care: an asset and 1Oslo

University Hospital, Norway Royal Institute of Technology, Stockholm, Sweden 3Karolinska Institutet, Stockholm, Sweden 4Stockholms Sjukhem, Stockholm, Sweden 5University of Oslo, Norway 2KTH

Corresponding Author: Mirjam Ekstedt, STH, Royal Institutet of Technology, Alfred Nobels Allé 10, 141 52 Huddinge, Sweden. Email: [email protected]

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additional burden, infinitely strong and struggling with helplessness, being an outsider in the center of care, and being in different temporalities. We conclude that it is a challenge for health care professionals to support the family and create room for FC’s needs in acute cancer care. System changes are needed in health care, so that the patient/FC dyad is viewed as a unit of care in a dual process of caregiving, which would enable FCs to be given space and inclusion in care, with their own needs simultaneously considered alongside those of the patient. Keywords family-focused care, health care professional’s perceptions of family, family caregivers, cancer, in-patient cancer care, Norway

Cancer is a challenge for society, the health care system, the patient and—not least—the patient’s family, particularly family members involved in caregiving. For patients in active treatment for cancer, family caregivers (FCs) are the primary source of social and emotional support and assume tremendous responsibility for daily functioning in the family (Milberg, Strang, & Jakobsson, 2004; Sand, Olsson, & Strang, 2010). Owing to improved diagnostics and treatment, longer life expectancy, and shorter hospital stays, patients increasingly cope with long-term illness at home. This, in turn, increases the FC’s responsibility and possibly burden, and also makes their role as a source of support for the patient even more important. In recent years, increasing attention has been paid to FC’s experiences and needs as “care recipients” in their own right. Health care services in many countries are being required to support FCs and involve them as partners in care (World Health Organization [WHO], 2012). When the FC is well supported, the well-being of the patient may be significantly increased (Bultz, Speca, Brasher, Geggie, & Page, 2000; Murray et al., 2010). Cooperation and communication between health care professionals and family members involved in caring for patients has become increasingly important (Harding, List, Epiphaniou, & Jones, 2012; Northfield & Nebauer, 2010; Stenberg, Ruland, Olsson, & Ekstedt, 2012). In this study, a FC is defined as someone who is close to the patient whether that individual(s) is a spouse, significant other, relative, adult children, or friend and who “actively participates in sharing the patient’s illness experience on a practical and/or emotional level” (Beaver & Witham, 2007, p. 17). For reasons of simplicity, the term patient has been chosen for the family member who receives acute, in-hospital treatment for a diagnosis of cancer. The term


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health care professionals has been chosen to include social workers, nurses, and physicians who work in an acute cancer care setting.

Current Knowledge Being a FC to a patient during their cancer trajectory is influenced by a number of challenges (Stenberg, Ruland, & Miaskowski, 2010), including the health problem (Blum & Sherman, 2010), various emotional reactions (Northfield & Nebauer, 2010), and significant social, financial, and employment implications (Grbich, Parker, & Maddocks, 2001; Teschendorf et al., 2007). Furthermore, FCs are exposed to considerable burden as a result of the many responsibilities or activities they are unprepared to handle (Schubart, Kinzie, & Farace, 2008). Several studies, from the perspective of the FCs, have described their need for information, emotional support, and the need to be acknowledged and invited into the treatment process (Carter, BryantLukosius, DiCenso, Blythe, & Neville, 2010; Osse, Vernooij-Dassen, Schade, & Grol, 2006; Stenberg et al., 2012). Health care professionals who work in palliative care settings have described FCs as fatigued and exhausted, with feelings of guilt, and fear of the diagnosis (Cagle & Wolff, 2009; Stajduhar, Nickel, Martin, & Funk, 2008). In addition, health care professionals describe FC’s feelings of ambivalence when dealing with financial issues and decision-making responsibilities and their doubts about the value of them being there for the patients (Stajduhar et al., 2008). The philosophy of patient and family-centered care which views families as integral members of the health care team has, for decades, advocated partnership, information sharing and patients’/families participation in decisionmaking and care (Bell, 2013). Although patient and family-centered care is supported by the WHO (2012) and national laws (e.g., Norwegian Ministry of Health and Care Services, 2009), patients and FCs are far from internalization as partners in acute hospital care. FCs are still reluctant to attend to their own needs (Robinson, Pesut, & Bottorff, 2012), calling for devoted health care professionals to recognize the challenges FCs experience and to establish a good relationship with FCs to insure open and receptive communication (Karlsson, Mattsson, Johansson, & Lidell, 2010). While there has been considerable research on the needs of FCs in palliative, end-of-life care (Andershed, 2006; Funk et al., 2010; Robinson et al., 2012; Ward-Griffin, McWilliam, & Oudshoorn, 2012), less attention has been given to FCs’ needs during the patients’ cancer treatment in hospital care. In addition, few studies have focused on health care professionals’ views of the FCs’ challenges, and their views about their own role and


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abilities to meet the needs of the FCs during patient’s cancer treatment in hospital care. This calls for a better understanding of health care professionals’ views of FCs and the challenge of involving and supporting FCs when the patient is being treated for cancer. Such an increased understanding will contribute to better support for FCs and thus better care for the patient. Therefore, the present study aimed to obtain a deeper understanding of challenges faced by FCs and their needs for support, as described by health care professionals during the patients’ in-hospital cancer treatment.

Theoretical Framework Families function within a social, cultural, economic, and environmental context. With the goal of deepening the understanding of the FC’s needs and challenges during the treatment phases of the patient’s cancer trajectory, an ecological perspective (Bronfenbrenner, Lerner, & Hamilton, 2005) was used as an overarching framework, exploring these aspects from the perspective of health care professionals. The primary focus of the ecological perspective to family caregiving is the dynamic relationship between the patient and FC in context. The changed and challenging situations FCs experience are related to the individuals involved in care (e.g., patient, health care professionals, or other family members), the environments (e.g., hospital ward/unit) and/or social/cultural contexts (e.g., health care organization, society), and the interaction between person and context. A distinctive and unique feature of the proposed ecological framework is that it is bifocal (Bronfenbrenner et al., 2005). A dyad is formed when FCs and patients pay attention to or participate in one another’s activities. As a result, FCs coordinate their activities with those of the patients and vice versa. A focus on the patient and FC as a dyad provides a framework for describing the dual nature of caregiving. In this study, the ecological perspective framework was used to identify FC’s needs and patterns of interaction that could be used for development of a psychosocial intervention for FCs.

Method Study Design This research report is part of a larger interdisciplinary and international collaboration to advance knowledge of the symptoms, problems, burden, and health-related quality of life of FCs of patients with cancer, and to develop and test an intervention for FC support (Ruland et al., 2007; Ruland et al., 2013). A review of the literature was published (Stenberg et al., 2010), and individual


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interviews were conducted to obtain a deeper understanding of the experiences of FCs living with a patient experiencing cancer (Stenberg et al., 2012). To meet the aim of the study, a hermeneutic approach was used (Ricoeur, 2007), and the study was based on focus group interviews with health care professionals as described by Krueger and Casey (2000). The open-ended nature of focus groups makes them useful in exploring attitudes, opinions, and perceptions (Morgan, 1997). Focus group interviews, as opposed to individual interviews, take advantage of group dynamics and may lead to discussions among members of the group. The study was performed in compliance with the principles outlined in the Declaration of Helsinki (World Medical Association, 2008), and was approved by the National Committees for Research Ethics in Norway (REK) and by the Ethical Board of Oslo University Hospital.

Participants To recruit a purposive sample (Corbin & Strauss, 2008) of health care professional participants, an introductory letter was sent to social workers, nurses, and physicians employed at different cancer care units at a Norwegian University Hospital. Health care professionals who offered care in the hospital unit had no explicit commitment to support FCs during the patient’s in-hospital cancer treatment. Thus, the support offered to FCs depended, to a large extent, on what FCs requested, and the health care professionals’ competence in engaging and including families. We focused on selecting a multidisciplinary team of experienced professionals who were closely involved in the patient’s in-hospital cancer treatment and care, and thus were able to describe their experiences of FCs in detail from various perspectives. Of 41 health care professionals who were invited, 26 (63.4%) agreed to participate. The second author (U.S.) contacted them and interviews were scheduled. Two persons withdrew, and a total of 24 health care professionals (2 men and 22 women) were interviewed. Four focus group interviews, with four to seven social workers and additional health care providers in each group, were conducted between November 2008 and January 2009. The participants in the focus groups were 8 social workers, 16 nurses, and 2 physicians. The 2 physicians (1 man and 1 woman) were interviewed individually as they were unable to participate in the focus groups. These interviews were conducted in their offices at the University Hospital, and lasted between 30 and 45 min. At the time of the interview, the age of the participants ranged from 29 to 61 (average 48.5) years. All were clinical practitioners with an average of 15 years experience in cancer care, representing a variety of different types of cancers.


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Interview Procedure The second author (U.S.), a social worker in cancer care and an experienced focus group moderator, led the group discussions assisted by a co-moderator with clinical experience (Kvale & Brinkman, 2009). The four focus group sessions lasted about 90 min, and took place during the participants’ working hours in an undisturbed conference room at Oslo University Hospital. The moderator led the sessions by following a thematic interview guide developed through discussions with experts in cancer treatment, the interprofessional research group, and by integrating the existing literature (Krueger & Casey, 2000; Kvale & Brinkman, 2009; Stenberg et al., 2010). The co-moderator sat in the periphery of the circle, observing the group process, taking notes, tape-recorded the interviews, and managed the equipment. The opening questions were intentionally broad and open-ended to encourage health care professionals to share their own perspectives: “Can you tell me about the challenges FCs encounter, as you see it from the perspective of a health care provider?” The moderator asked probing questions focused on challenges of day-to-day life, and FC’s need for support during the patient’s illness such as “How are the daily lives of FCs impacted?” “How do FCs challenges change over time?” “What kind of need of information and support do FCs have?” and “Do FCs find any kind of benefits through caring?” The participants spontaneously described what they had experienced, felt, and done related to the FC’s situation. The safe environment allowed interactions among participants, and enhanced confirmation, reinforcement, and contradiction of statements (Krueger & Casey, 2000). Further questions were posed during the interview to elaborate, deepen, and validate the answers, or guide the participants back to the topic (Kvale & Brinkman, 2009). At the conclusion of each focus group discussion, the investigators modified the focus group guide to include any new topics relevant for exploration in subsequent groups. The interviews were tape-recorded and transcribed verbatim. Transcripts distinguished the statements of different speakers, but did not identify individual speakers by name.

Analysis The transcribed interviews were analyzed using a hermeneutic method according to the principles originally described by Radnitzky (1968) and later adapted and extended by Kvale and Brinkman (2009) and used in several studies (Milberg et al., 2004; Sand et al., 2010; Stenberg et al., 2012). These principles are as follows: (a) continuous back-and-forth process between the parts and the whole (the hermeneutic spiral); (b) interpretation of


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meaning ends when a “good gestalt” is reached, an inner unity of the text, free from logical contradictions; (c) testing parts of the interpretations against the global meaning of the text; (d) autonomy of the text, that is, the text should also be understood on the basis of its own frame of reference; (e) a hermeneutical explication of a text concerns knowledge about the theme of the text; (f) an interpretation of a text is not free from pre-suppositions; and (g) every interpretation involves innovation and creativity. The analysis was performed in several steps. First, the transcripts were read from the beginning to the end to get a general sense and overview of overall experiences. Next, the text was carefully read to discover units of meaning with common and distinct qualities. These meaning units were carefully read with a focus on underlying meaning and implicit issues that were hidden in the text. The reading was guided by the following question generated from the text: “How does this health care provider perceive FC’s challenges and needs for support?” Significant expressions were coded and compared to find the health care provider’s central experiences. The analytic process was mainly carried out by the first author. Themes that were salient in the interviews were strengthened and validated by the co-authors (M.O. and U.S.) who acted as co-judges and examined the relevance and applicability of the themes, separately and in conjugation several times, as part of reflexivity (Malterud, 2001). Finally, the whole text was read through once again to reconfirm all the themes against the text as a whole and to search for a new understanding of the whole, which completes “the hermeneutic spiral” (Ricoeur, 2007).

Trustworthiness According to hermeneutics, interpretation without presumptions is impossible. Therefore, it was important to be aware of one’s own pre-understanding to minimize the risk of unconsciously influencing the analysis. The analytic process took advantage of our different professional backgrounds, one nurse and two social workers, in that different perspective, divergent interpretations were offered. According to Ricoeur (2007), understanding is to be found in discrepancies rather than agreement. The value of discrepancies was that alternative options were continuously and thoroughly discussed until trustworthiness of the interpretation was reached.

Findings Four main themes emerged from the analysis describing the health care personnel’s experiences of FCs during the patient’s cancer trajectory: “an asset


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and additional burden”; “infinitely strong and struggling with helplessness”; “being an outsider in the center of care”; and “being in different temporalities.” These themes formed a whole that sheds light on health care professionals’ challenges to create room for FCs’ in-hospital cancer care and to support the family’s adjustment to the role of caregiving.

Being an Asset and an Additional Burden to Health Care Health care professionals described how FCs eventually became “experts” on the patient’s illness and treatment. The FCs were seen as an asset for the health care system at the medical visit, for example, when they acted as an advocate for the patient, reminding the patient what he or she should ask about, and bringing up topics of concern. They assisted the patient by posing clarifying questions and acted as a secretary, listening and taking notes about what is said: We often rely implicitly and completely on the next of kin. It’s always the next of kin who call me before a consultation and tell me what’s really going on. Because if the patient doesn’t say . . . Then I know what to ask about, and otherwise the next of kin serve as reminders, they sort of give clues to the patient so the patient tells more, and they ask the patient how it actually was.

Health care personnel were aware that they would have to arrange a great deal of care services for the patient at discharge if there were no FCs to take over the caregiving. This was especially true for the elderly, and became particularly evident when a patient did not have any FC: It’s actually built into our method of caring for patients with cancer; we count on the next of kin always being there and they are part of our planning. It’s when there are no next of kin that we have extra gaps to fill. There are things we count on next of kin doing, and we have to find a way to replace them if no next of kin are around.

Health care professionals described that many FCs seemed to be uncomfortable in the unfamiliar hospital environment and needed some help to find meaningful ways of communicating with the patient. Especially adult children and teens seemed lost, and they hesitated to visit the patient because they did not know what to say. There were many solitary FCs in need of support: Often when you talk one on one to next of kin and ask “how are you doing,” it happens so often that many of them start crying and they’re completely in


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despair. I have next of kin who say it’s the first time anyone ever sat down and listened to my side of the story. So in my opinion the care we give them does a lot of good.

FCs usually wanted to add some value for the patient, but often needed someone to facilitate their involvement in the patients’ care. This was done by creating a physical space to be alongside the patient, or by giving information and advice about practical matters that can be addressed. Showing FCs little symbolic things they could do for the patient seemed to give them peace, and they could find a way to relax with the patient: And she felt such a need to do something, and what we can do is ask them to wash the (patient’s) feet or something, or put lotion on the (patient’s) hands, and she had such a close relationship with her mother and it was so wonderful, I could see how she relaxed when she was given a chance to do that.

Even though FCs were seen as an indispensable asset for the patients, health care professionals described ambivalent feelings toward taking care of FCs. It required time to make FCs comfortable, to listen to them, and to pay attention to their needs, and the professionals’ work schedule did not provide sufficient time for that. In some situations, FC’s strong intent to contribute to the patient’s well-being became a little “too much” and was described as an arduous challenge by health care professionals: So it’s a constant struggle to get them not to nag the patient all the time about food or weight or rest. That they feel they have to nag on the patient’s behalf instead of waiting for a nurse to come by with this or that, or that they call and try to get examinations performed sooner or pester us about a CT we intended to order anyway at the next opportunity. So they can believe that if they hadn’t intervened, the patient wouldn’t have got it, which I don’t think is true a lot of the time.

Some health care professionals admitted that it was an extra burden to facilitate for FCs and that many would probably avoid it if they could. However, no one in the focus groups talked about these “politically incorrect” feelings at their work place.

Infinitely Strong and Struggling With Helplessness Health care professionals described their difficulties in dealing with FC’s unspoken and conflicting emotions. FCs often behaved as though everything was fine in front of the patient, but were struggling with helplessness and


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worry under the surface. One professional expressed it as “to take care and be very sad is twice the work.” They were so intertwined and connected with their family member who was the patient that they sometimes found it difficult to distinguish themselves from the other. Some had, for example, difficulty with eating, when the patient had nausea or poor appetite. The health care professionals experienced how FCs had difficulties just to be, and to take care of their own needs while their next of kin was receiving cancer treatment, and that they may have needed help to withdraw a little: When the patients have started the treatment and don’t have to wait any longer, they relax a bit, but the next of kin, they want to know what’s going to happen at the next treatment session, next week, next check-up. It’s as if they are constantly struggling with the process. And I think a lot of them are terribly afraid. Maybe our role is to take a bit of responsibility off their shoulders, but they also have to feel secure about giving responsibility to others, or letting them take it.

Health care professionals observed how FCs often took huge responsibility in being strong and supportive to the patient, but at the same time struggled with contradictory and forbidden emotions and thoughts: I see that next of kin have to take on many new tasks and different types of responsibility to keep the family afloat, and be the pillar of strength, and I sometimes feel that the next of kin feel they have to carry a heavy burden all alone, that the focus is on the patient, and that they shouldn’t put any extra burden on the patient, so they’re keeping a lot of their own reactions sort of on the inside.

Professionals identified suppression of anger over the patients’ inability to take care of everyday matters as they used to do, or feelings of disgust because of the transformation the patient underwent during illness or treatment. At the same time, FCs were ashamed and felt guilt over their undesired emotions, and some expressed guilt over being healthy while the patient is ill. Professionals described how they became aware of troubles that FCs needed support to handle. Many FCs struggled with bad conscience, torn between different needs and tasks, trying to get everyday life to work. They were pulled in different directions and regardless of where they are, they thought they should have been somewhere else. If they left their children at home to provide support to the sick relative, they felt guilty for not being with the kids, and if they stayed at home, they felt bad because they were not standing by the one who is sick:


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But I get a strong impression that they live with constant feelings of guilt about work, about the person who’s sick, and for the home if there are children there. We often don’t see how vulnerable everything is when they’re at home with all that stuff to handle. And many pull themselves together when they come into this hospital situation. Because there are lots of details that have to run smoothly in their everyday lives and everybody is exhausted.

Being an Outsider in the Center of Care Many FCs needed support to find their role as a FC and to understand how the health system works. Some were good at getting support from various resources, whereas others needed help to find social support or to get funding to cover part of their travel and subsistence costs. Health care professionals observed that FCs have few rights and possibilities to get support from the health care system. FCs could not take time off from their responsibilities and often found themselves alone with their problems: “They have no right to take time off, there are no social insurance benefits for next of kin. They’re often all alone in their struggle because they can’t talk about their fears with the other party.” In the interviews with health care professionals, it was revealed that there is literally no room for FCs in hospital care, neither physically nor emotionally in the form of time. Health care professionals described how FCs perceive that the patient is in focus and in some ways has better control, while the FCs stand on the sidelines and are not automatically invited into shared decision-making about plans for care or treatment: “One said he understood he’d been taken along to the hospital because he was next of kin, but still he didn’t feel he was being included.” This uneven distribution of responsibilities and information flow contributed to an imbalance in the relationship and limited the FCs opportunities to understand and enter into their role as a FC.

Being in Different Temporalities The FCs experienced an illness trajectory just like the patient, but the patient and the FC were in different realities and not always in sync with each other. The health care professionals perceived that the role as a FC varied depending on gender, the patient’s age, the severity and stage of disease, and what kind of relationship the FC and the patient have with each other. There are many different expressions of grief and there had to be time and space for different ways of “being” in the situation:


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Men tend to handle things as they arise, and where grieving is concerned I’ve often seen in couples that don’t grieve the way their partner would like them to grieve, that they grieve in different ways, so the impression is that they aren’t interested or that they’re not grieving enough.

Health care professionals described a need for meeting the FCs “just in time”—not too early, not too late. The relatives may actually be more demanding today, knowing precisely what they want from health care, but this does not necessarily mean that they understand more. It was not just about having the courage to take in the tough message, but during the initial period many FCs only remembered fragments of the information they received. At that stage, it was no use giving too much information, or taking away the hope that is required at the moment. Thus, it was seen as important to dig deeper into how the FC had perceived the information given, what they want and what they need: They feel they have to pull themselves together, have to keep themselves going for the sake of the patient and support the patient. The person may not have shown any emotion, or cried or anything if the spouse or partner or next of kin was present.

FCs were particularly sensitive to the information the doctor provided. It was often a tough roller coaster for relatives who were thrown between hope 1 day, despair the next, depending on whether information is given to them “straight” or in a roundabout fashion. Health care personnel described how hope developed and changed over time, and that the most profound question—what will happen when death approaches—had no answers. The health care personnel emphasized that for their own part it was important to remember that they do not have all the answers, but they can be there and listen. There is something good about FCs being there, in the midst of the process, instead of staying at home with all the images that are created in the brain: My impression is that the feelings are more intense, the good feelings are even better and the bad feelings even more painful. The whole family has to be on the same train, and they all have to get on at pretty much the same stop, and nobody should have to jump aboard on the way, or have to jump off.

Health care professionals believed that if FCs could share the patient’s journey from hope, until hope is no longer there, there was greater opportunity to become synchronized with each other, and to succeed in creating openness and a sharing atmosphere. In that case, a new closeness developed in the family/relationship:


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There are also families that come closer to one another, with the children too, and there’s such closeness in it. But I think especially they come closer to one another if they can manage to share and you can see how their relationship sort of grows. And that’s really great for us too, we get some fantastic teamwork then.

If the disease became chronic, the FCs needed to reorient and change focus several times during the illness trajectory. There was also a risk that the patient and the FC were in different phases after the treatment is finished. One was prepared to move forward, while the other had been marked by illness experiences, and was not ready to leave it behind yet. Then, the FC or the patient required help and support to wait for the other.

The Whole: It Is a Challenge to Create Room for FCs in Patients’ Hospital Care and to Support the Family’s Adjustment to the Role of Caregiving The challenge for health care personnel in their task of supporting FCs in their role of caregiving was to balance between the patient’s and the FC’s different needs in different phases of the illness trajectory and to help sustain hope in both. The challenge in “creating room” included experience, time, and commitment to support emotional and practical needs as well as included the FC as an asset for the patient’s care during the hospital stay. The FCs undertook a journey, which in a way was shared with the patient’s illness journey, but yet was essentially distinct from the patient’s journey. In this trajectory, the patient and FC were sometimes out of step. It took experience and time on the part of health care professionals to support difficult conversations where one family member wanted to shield the other person from grief, or when they were unable to share difficult issues. In the center of the patient’s care, the FC was an outsider, who struggled between maintaining life as usual, and the uncertain future the illness provided. By enduring in the midst of the uncertainty, a greater closeness in the family relationship could possibly emerge. Health care professionals were aware that there were no answers to existential questions, but that professional caregivers were able to provide relief by being there, listening, and by creating space for different ways to mourn losses.

Discussion and Implications The primary contribution of the ecological perspective in this study is the examination of the dynamic relationship between the FC and patient in


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context. From the view of family care and systemic theory, it is essential to perceive the family as a whole entity where members of a family are mutually dependent: They interact and are interconnected (Bernler, Cajvert, Johnsson, & Lindgren, 2008). Our study shows that health care professionals are aware that FCs face multiple demands and that these professionals can identify vulnerable FCs in phases when they are in need of support. Health care professionals can go to great lengths to support the emotional, practical, and informational needs of FCs, despite a number of challenges. In a recent survey, professional caregivers estimated that they could give support according to the FC’s need to talk and to get various kinds of information while the patient was being treated in hospital, whereas it was, in most cases, not possible to fulfill the FC’s need for practical support concerning caring at home (Benkel, Wijk, & Molander, 2012). Similarly, health care professionals in our study perceived that even though they met the FC’s needs for crucial conversations, the system did not offer adequate support for FC’s essential needs of an economical or practical nature. Even though health care professionals were aware that FCs are indispensable resources for the patient, they could not find the extra time, space, and commitment needed to support them well. Nevertheless, professional caregivers were consistently aware that all efforts to meet the FC’s needs were time well spent, in that it helped ensure that they would be an asset for the patient and ultimately for the health care system. A dilemma is that FCs are simultaneously viewed as an asset and a burden, with specific needs of their own; their position is neither that of a “co-worker” nor that of a “client” within the system. In concert with other studies, the FCs have no given place in care, and they are often either ignored or taken for granted (Lindholm, Makela, Rantanen-Siljamaki, & Nieminen, 2007). They are expected to be around but it is not obvious that they are invited to participate in decision-making and care planning. Shared decision-making and partnership are hallmarks of person-centered care (Ekman et al., 2011), which if conscientiously and systematically applied may help as a mainstay of care in long-term illness. Given that the total number of days of hospital stay is being systematically reduced, and advanced health care is increasingly moving into homes, the FC’s role in maintaining continuity of care is becoming ever more important. The need to include FCs in patient care has been voiced in the health care literature for a very long time. However, although person-centered care is based on the patient’s individual needs and expectations, including context, history, and family, the primary focus in this perspective of care is on the patient–provider relationship (Ekman et al., 2011). As the FCs are not explicitly included in this partnership, they are rarely also invited to participate. By viewing the patient/FC dyad as a unit of care in a dual process of caregiving, the FCs would,


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according to the ecological model, be given a natural space in patient care and their own needs would simultaneously be considered. The results from this study indicate, however, that organizational and economic systems changes are needed to make such a model of family-focused care feasible in health care. However, whether it is the FC’s own desire to take an active part in the care process, or if they find themselves situated as co-workers by the health care system, family members must be considered (Stajduhar et al., 2008). The present study indicates that FC’s ability to take active part in care fluctuates along the care trajectory, making it particularly important for health care professionals to tailor individual support for FCs, and to identify FCs who are overwhelmed by responsibilities. The health care professionals in our study felt that it was also part of their task to relieve FCs of some responsibility and encourage them to withdraw a little when the patient’s condition was stable. One overall challenge for professional caregivers is to support the FCs within the framework of the health care system. Thus, health authorities, governments, and managers have to make substantial commitments to facilitate for health care professionals to include FCs in information, decision-making, and care planning (Ekman et al., 2011; Northouse, 2012). Consistent with the findings in other studies (Bernard & Guarnaccia, 2003; Northfield & Nebauer, 2010; Stajduhar et al., 2008), health care professionals perceived that FCs did not view themselves as a legitimate target for support, focusing instead on the patient. It has been claimed that it may be quite untenable for health and social care professionals to improve FC’s quality of life, as promoted, for example, by the WHO (Hudson & Payne, 2011), and indeed realistic objectives are needed. However, health care professionals seem to have the potential to make significant changes in the way a FC handles the situation through relatively small efforts. Such support could take the form of encouraging FCs to maintain social networks (Haley, 2003) to request and accept assistance from others (Given & Northouse, 2011), and not feel guilty at times when they actually may feel joy or other positive emotions (Folkman, 2010). The health care professional’s skill at delivering information about diagnosis and treatment at a suitable level, yet without “tiptoeing,” seems to be crucial for how next of kin cope with the FC role during the initial phase. This is consistent with patients’ perceptions of difficult communication during the diagnostic period, when the emotional shock is profound and the information to be processed is complex (Thorne et al., 2009). Offering a setting where FCs can validate their emotions with similarly affected peers may also alleviate some caregiver burden (Northfield & Nebauer, 2010). The opportunity for Internet-based communication has increased tremendously as the Internet has become more accessible and


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user-friendly. An Internet-based application for online forum with peers, communication with professional caregivers, and seeking information on symptom management has been shown to provide support for different patient groups (Grimsbo, Finset, & Ruland, 2011; Ruland et al., 2013; Ruland, Brynhi, Andersen, & Bryhni, 2008), and in palliative care, FCs experienced reductions in emotional distress after online communication with clinicians about symptom management (Chih et al., 2013). In everyday living, family members are mutually interdependent, taking on different roles and tasks. They develop their own idiosyncratic patterns of communication and norms of behavior, and there is a system or pattern that gives the family unit meaning and equilibrium in coping with the ups and downs of living. Change in one part of the system will have a corresponding effect on another part of the system, rather like a “see-saw” effect (Hudson & Payne, 2008; Wright & Leahey, 2013). The description health care professionals gave of FC’s burden demonstrates that the FC’s needs are more complex than just a need for information and involvement in decision-making (Blum & Sherman, 2010). This study suggests that FCs follow an “illness trajectory” that is parallel to the patient’s but in some areas is substantially different. This implies that even if the patient/FC dyad is treated as a unit of care, there are two different sets of realities and challenges for health professionals to support FCs and the patient. Despite the fact that the health care professionals who participated in the focus groups had a great deal of experience, they were challenged by FC’s psychosocial needs. The FC’s struggle with various dilemmas was described as a dual process in our previous study (Stenberg et al., 2012). The dual process of bereavement (Stroebe & Schut, 1999) suggests that adaptive coping with bereavement includes a pendulum between loss-oriented and restoration-oriented stressors related to the bereavement. This model can be used as a means for health care professionals to better understand FCs oscillation between the sometimes contradictory demands that arise when a family member is diagnosed with cancer. Becoming a FC to a patient with a life-threatening disease is an intruder that challenges core assumptions about life as we know it (Tedeschi & Calhoun, 2004) and provokes existential anxiety, guilt, and feelings of meaninglessness and isolation (Tillich, 1952/2000). Loss-oriented stressors associated with becoming a FC may be related to grief over lost confidence in life: Confidence may have been fundamentally challenged, even if the patient will recover. Restoration-oriented stressors focus on the adjustments of everyday life that must be undertaken. They include mastering new tasks and developing a new identity, realigning from “spouse” or “son/daughter” to “FC.” The FC’s oscillation back and forth between being infinitely strong and struggling with helplessness was acknowledged by the


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health care professional who noted “to take care of someone and at the same time be very sad must be twice the work.” Experienced health care professionals from different disciplines were aware that under the apparently strong surface, FCs carried a burden of conflicting emotions of guilt, anger, and fear. However, the individual health professional described meeting the FCs in their conflicting needs as a challenge, and pointed to a need for different perspectives and competence to better understand and support the FCs. Health care professionals were challenged by families’ tendency to avoid talking about difficult issues in relation to death and uncertainty in illness. It could be a matter of unresolved conflicts that the patient and the FC were out of step in their process of coping with illness, or that they were trying to shield each other from difficult emotions. An alternative explanation may be found in what is suggested to be part of the process of bereavement (Stroebe & Schut, 1999), that stressors must be both confronted and avoided, and that confrontations must also be “dosed” if a person is to cope effectively with losses. The pendulum swinging between the extremes of life and death was described in persons struggling to come to terms with their own impending death (Sand, Olsson, & Strang, 2009). The process of becoming a FC might involve a similar pendulum swinging between closeness and distance. This back-andforth movement may be complicated when the FC and the patient are at different phases of the disease trajectory, or when the FC neglects his or her own needs in an attempt to protect the “significant other.” The challenge for the health care professionals was to balance between the patients’ and the FC’s needs, and to open up for different ways of grieving. Studies indicate that emotional disclosure does not necessarily facilitate adjustment to loss (Stroebe, Schut, & Stroebe, 2005) and that a tacit agreement to avoid emotionally difficult issues may protect against helplessness (Milberg & Strang, 2011) and psychopathological symptoms (Coifman, Bonanno, Ray, & Gross, 2007). Health care professionals have to be aware that FCs acting on restoration-related demands by taking care of practical issues at home while the patient underwent treatment may provide respite from mourning and brooding. Health care professionals providing support should be sensitive to the FC’s individual patterns of purposeful, conscious avoidance (Milberg & Strang, 2011). To actively involve FCs in care plans might thus contribute to an adaptive coping process in some situations, while encouraging withdrawal from responsibility may be appropriate in other situations. The FC’s pendulum between hope and despair was compared with a roller coaster and the health care professionals’ challenge was to meet them “just in time” to sustain their hope. Professional caregivers could see how hope changed and developed over time. FC’s profound responsibility for keeping hope alive, mostly by focusing on the present, has been described earlier


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(Sand et al., 2010). Hope allows people to hold conflicting expectations simultaneously, which in turn fosters adaptive coping (Folkman, 2010). Preparing for the worst while maintaining the hope that the patient will recover frees room for simultaneous problem solving and emotional regulation (Folkman, 2010). Thus, an inner space might be created, which is the basis for relationships with others, and where transformation can take place (Crafoord, 1997). Families who dwelt in the midst of uncertainty, and shared difficult emotions, even though no hope was there grew into greater closeness in the family relationship. According to the posttraumatic growth model (Cann et al., 2010; Tedeschi & Calhoun, 2004), life-threatening experiences challenge and devastate one’s assumptions and core beliefs about the world. The cognitive processes that go hand in hand with rumination, when one seeks to restore a sense of comprehension and meaning, may contribute to a revised sense of life’s priorities and to personal growth. In the deepest sense, each human being is alone in the meeting with existential questions of suffering. Health care professionals emphasize that it is important to remember that they do not have all the answers—but they can be there and listen.

Study Strengths and Limitations This study offers the perspective of health care professional’s view of FCs of cancer patients in Norway, a country which is only beginning to be described in the family nursing literature. The sample consisted of social workers, nurses, and physicians at a Norwegian University Hospital. The findings of a qualitative study are bound by the context and we have described this context for the reader to assess transferability. Credibility was reached by the participants’ opportunity to challenge and verify one another’s opinions during the discussion in the focus group. Health care professionals in this qualitative study were caring for patients with a variety of cancer diagnoses and their FCs, and components from their experiences and dilemmas may be transferable to other similar contexts. The sample of health care professionals was multidisciplinary. The aim of the sampling was to cover as many aspects of the phenomenon as possible, and the breadth of the material strengthens the study.

Conclusion This study adds a more comprehensive approach to the understanding of FCs, not merely as the principal source of support for the patients, and deepens the understanding of the family as a system and a unit facing cancer. Even though the family together is viewed as a unit of care, health care professionals face


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a different set of challenges trying to assist FCs who are involved in their own separate though parallel trajectory of cancer. Health care professionals are aware of vulnerable FCs in need for support and face challenges when they attempt to involve FCs in patients’ hospital care and to support the family’s adjustment to the role of caregiving. A multidisciplinary team of professional caregivers can support FCs in this trajectory by introducing them into the health care system, by opening up for different ways to mourn losses, by inviting them to take active part in caring for the patients, and by facilitating them to accept support from others. Balancing between the needs of patients and FCs while sustaining hope in both can be a challenge for professional caregivers, who must sometimes struggle with their own feelings of inadequacy because of limited resources within health care. Acknowledgments We would like to thank the social workers and health care providers who participated in the study, and the co-moderators of the focus groups: Hanne Camilla Heer (registered nurse), Liv Helgaker (psychiatric nurse), and Hanne Synnøve Skedsmo Nilsen (master of social work).

Authors’ Note The study sponsor did not have a role in the study design, data collection and analyses, or manuscript preparation. The authors had full access to all of the data and accept full responsibility for the integrity and accuracy of the data.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by SouthEastern Norway Regional Health Authority Research Fund (Grant 2008088: Improving Symptom Management for Patients with Cancer and Their Caregivers through Internet support: A randomized clinical trial, PI C. Ruland), the Center for Shared Decision Making and Collaborative Care Research, Section for Physiotherapy and Social Medicine, Department of Clinical Service, Oslo University Hospital, Norway.

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Author Biographies Mirjam Ekstedt, RN, PhD, is an associate professor, KTH Royal Institute Technology, School of Technology and Health in Stockholm, Sweden, and also affiliated with the Center for Shared Decision Making and Collaborative Care Research in Oslo, Norway. Her research examines systems safety in health care organizations including the human-technology-organization interaction using a collaborative, mixed-methods approach; patient and family centered care; multidisciplinary intervention; and implementation of e-Health communication tools in health care systems. Her specific focus is on how continuity and safety in home-care and transitional care are improved for people with complex care needs. Her recent publications include, “Nurses’ Experiences of Using an Interactive Tailored Patient Assessment Tool One Year Past Implementation” in International Journal of Medical Informatics (2014, with E. Børøsund, C. Ruland, & M. Ekstedt), “Sleep, Physical Activity and BMI in Six to Ten-Year-Old Children Measured by Accelerometry: A Cross-Sectional Study” in The International Journal of Behavioral Nutrition and Physical Activity (2013, with M. Ekstedt, G. Nyberg, M. Ingre, O. Ekblom, & C. Marcus), and “To Live Close to a Person With Cancer-Experiences of Family Caregivers” in Social Work in Health Care (2012, with U. Stenberg, C. M. Ruland, M. Olsson, & M. Ekstedt). Una Stenberg, MSW, is a doctoral student and hospital social worker at Center for Shared Decision Making and Collaborative Care Research, and Section of Physiotherapy and Social Medicine, Oslo University Hospital, Norway. Her research is focused on the family caregivers of cancer patients regarding how the daily life, feelings, and thoughts of the whole family are affected by illness. Her recent publications include “Family Caregivers of Cancer Patients: Perceived Burden and Symptoms During the Early Phases of Cancer Treatment” in Social Work in Health Care (2014, with U. Stenberg, M. Cvancarova, M. Ekstedt, M. Olsson, & C. Ruland), “Living Close to a Person With Cancer: A Review of the International Literature and Implications for Social Work Practice” in Journal of Gerontological Social Work (2014, with U. Stenberg, M. Ekstedt, M. Olsson, & C. Ruland), and “To Live Close to a Person With Cancer-Experiences of Family Caregivers” in Social Work in Health Care (2012, with U. Stenberg, C. M. Ruland, M. Olsson, & M. Ekstedt). Mariann Olsson, MSW, PhD, is an associate professor at Karolinska Institutet and a senior researcher at Stockholms Sjukhem, Stockholm, Sweden. She teaches Social Work in Health to graduate social work students and Psychosocial Interventions in Health Care to graduate interdisciplinary students. Her research interests include family support in end-of-life care as well as in a broader health and social care perspective. Her recent publications include, “Family Members’ Experiences of the Impact of the LCP in a Palliative Care Unit and a Geriatric Ward in Sweden” in International Journal of Palliative Nursing (2014, with M. L. Ekeström, M. Olsson, S. Runesdotter, & C. J. Furst), “The Perspectives of Bereaved Family Members on Their Experiences


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of Support in Palliative Care” in International Journal of Palliative Nursing (2013, with T. Lundberg, M. Olsson, & C. J. Furst), and “Adjustment and Social Support at Workplace Shortly After Breast Cancer Surgery and Its Associations With Sick Leave” in Psycho-Oncology (2013, with M. Nilsson, L.-M. Petersson, A. WennmanLarsen, M. Olsson, M. Vaez, & K. Alexanderson). Cornelia M. Ruland, RN, PhD, is a professor at the Department of Medicine, University of Oslo, and Department Head of the Center for Shared Decision Making and Collaborative Care Research at Oslo University Hospital, Norway. Her program of research is devoted to developing and testing informatics tools for patient–provider communication, shared decision-making, illness self-management, and patient centered collaborative care to improve patient care quality and patient outcomes. Recent publications include, “Effects of an Internet Support System to Assist Cancer Patients in Reducing Symptom Distress: A Randomized Controlled Trial” in Cancer Nursing (2013, with C. M. P. Ruland, T. M. Andersen, A. M. Jeneson, S. P. Moore, G. H. M. Grimsbo, E. M. Borosund, & M. Ellison) and “Effects of a Computer-Supported Interactive Tailored Patient Assessment Tool on Patient Care, Symptom Distress, and Patients’ Need for Symptom Management Support: A Randomized Clinical Trial” in Journal of the American Medical Informatics Association (2010, with C. M. Ruland, H. H. Holte, J. Roislien, C. Heaven, G. A. Hamilton, J. Kristiansen, . . . M. C. Ellison).


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Care Transition Experiences of Older Veterans and Their Caregivers.

A model for teaching health care professionals the components of the family.

The Senior Care Study. Does inpatient interdisciplinary geriatric assessment help the family caregivers of acutely ill older patients?

Advantages and Challenges: The Experience of Geriatrics Health Care Providers as Family Caregivers.

The sexual health care needs after colorectal cancer: the view of patients, partners, and health care professionals.