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Journal of Social Work in End-Of-Life & Palliative Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wswe20

Living in Liminality—Being Simultaneously Visible and Invisible: Caregivers' Narratives of Palliative Care a

Elisabeth Dahlborg Lyckhage & Berit Lindahl

b

a

Department of Nursing , Health and Culture, University of West , Trollhättan , Sweden b

Caring Sciences , University of Borås , Borås , Sweden Published online: 02 Dec 2013.

To cite this article: Elisabeth Dahlborg Lyckhage & Berit Lindahl (2013) Living in Liminality—Being Simultaneously Visible and Invisible: Caregivers' Narratives of Palliative Care, Journal of Social Work in End-Of-Life & Palliative Care, 9:4, 272-288, DOI: 10.1080/15524256.2013.846885 To link to this article: http://dx.doi.org/10.1080/15524256.2013.846885

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Journal of Social Work in End-of-Life & Palliative Care, 9:272–288, 2013 Copyright © Taylor & Francis Group, LLC ISSN: 1552-4256 print/1552-4264 online DOI: 10.1080/15524256.2013.846885

Living in Liminality—Being Simultaneously Visible and Invisible: Caregivers’ Narratives of Palliative Care ELISABETH DAHLBORG LYCKHAGE Downloaded by [University of Alberta] at 13:52 10 December 2014

Department of Nursing, Health and Culture, University of West, Trollhättan, Sweden

BERIT LINDAHL Caring Sciences, University of Borås, Borås, Sweden

Palliative care is an integral part of care and takes place in many settings—including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered—including the individual’s history, family and loved ones, and individual strengths and weaknesses. KEYWORDS liminality

narrative, palliative home care, person-centered,

Received 21 May 2012; accepted 11 January 2013. Address correspondence to Elisabeth Dahlborg Lyckhage, Högskolan Väst, 461 86 Trollhättan, Sweden. E-mail: [email protected] 272

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INTRODUCTION During the last 20 years there has been a move in professional health care away from hospitals and into to the home. The motive for this “move” is the implicit idea of the home as the ideal and most salubrious place to be when recovering from illness (Exley & Allen, 2007; Liaschenko, 1997; Lindahl, Lidén, & Lindblad, 2011). In a metasynthesis study concerning relationships in home care (Lindahl et al., 2011), it was found that there may be a risk of the private area changing when health care professionals enter into people’s homes. The home is usually seen as both the place and space where people find rest and peace. It is also a place in which to develop habits. However, when professional carers enter into the home there is a risk that the home might be transformed into a public place. Moreover, the presence of technology, medical supplies, and multiple health care professionals may alter the essence of home (Lindahl & Lindblad, 2011). Exley and Allen (2007) claimed that good home care does not need to be located in the private home. However, health care managers and professionals need to reflect critically on new designs in more person-centered and flexible forms where people would be given a chance to choose between domestic or institutional professional nursing care. Munck, Fridlund, and Mårtensson (2008) also argued for a freedom of choice both in relation to caring activities and the place for care. When planning for home palliative care, it is therefore of great importance to include support to the spouses.

PALLIATIVE HOME CARE Earlier research about palliative care in Sweden has identified the extent to which patients die at home or in institutions. According to Carlsson and Rollison (2003), there are gender differences in relation to place of death in the sense that men die at home more often than women. The researchers’ results show that death was mainly institutionalized in the sense that it took place in a hospital or in a special housing. A retrospective study of medical records from patients in palliative care during the last 3 months before death revealed that about 70% had used the hospital or outpatient care two to three times ( Jakobsson, Berg, Öhlén, Odén & Gaston-Johansson, 2006). The elderly cared for in their homes had a high number of emergency hospital admissions, which often ended with the person’s death in the hospital (Andersson, Hallberg, & Edberg 2007). According to Gyllenhammar et  al. (2003), the strongest predictor for dying at home was a wish to have people around; i.e., not to be alone. Hence, patients cared for in their homes could have had many hospital stays despite access to informal care. One possible explanation for this could be that the close ones take on the role of “the sick person’s watch,” or that they felt inadequate. The results from a Swedish context appear to be consistent with international studies.

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BEING A FAMILY CAREGIVER IN PALLIATIVE HOME CARE In Exley and Allen’s (2007) study about home palliative care, the caregivers did not complain about modifying their homes to meet the needs of the sick person. However, difficulties occurred concerning the need to refurnish and rearrange the home to suit the caring needs and to carry out intimate body care of the terminally ill. Tang, Li, and Liao (2007) point out that Asian tradition in general is connected with a traditional family caregiver’s ideology. However, when they studied risk situations of Taiwanese family caregivers in connection with palliative care at home, they found that the majority were at risk of depressive symptoms. Bachner, O’Rourke, Davidov, and Carmel (2009) found a significant inverse relation between open communication concerning death and depressive symptoms when studying caregivers of home hospice and hospital inpatients in Israel. An American study (Tang, 2009) describing home-hospice care showed that factors such as higher education, good health status, greater spirituality, and a social network and support led to a significantly positive outcome regarding the view of life quality. When Escobar Pinzon and colleagues (2011) explored preferred places of death of German deceased people and their close ones, home was the place most preferred. Living together with a nonworking relative in a rural area or small town increased the possibility of fulfilling this wish. The life situation for people while caring for their terminally ill loved ones suffering from end-stage heart failure has been described as both a comfort and a strain (Brännström, Ekman, Boman, & Strandberg, 2007). It meant always being on call and on standby, in both ups and downs, and mediating support from health professionals when the situation became intolerable. According to Johnston, Milligan, Foster, and Kearney (2012), the family needed support in order to enable patients to remain at home and to maintain their independence. Family-centered care (FCC) can be a resource to increase family involvement “at the end-of-life” (Kovacs, Bellin, & Fauri, 2006). Integral to the family-centered philosophy of care is that the health professional understands and encourages family members to support the dying person. Hence, the study showed that in palliative care, informal carers may experience stress of different types, including strain of family relationships. Their conclusion was that by FCC, carers are better prepared to meet the challenges as it enhances both the lives of people who are dying and the carers. Harding, List, Epiphaniou, and Jones (2011) highlighted that targeted interventions for informal caregivers in palliative care have increased. Remaining at home is associated with the availability of family support to the dying person. In Sweden, the first home care teams started operating in the late 1970s. Advanced home care can be said to have begun with the start of affiliated hospital nursing (The Swedish National Board of Health and

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Welfare, 2007) and was based on the idea that the patients would receive care in their own homes at all hours. In 1992 the Swedish government reformed health care organization and management resulting in the transfer of responsibility for home care nursing to the municipalities. The present study is part of a larger project that aimed at evaluating the implementation of a local palliative care program (LPCP, 2003) and examining its effects on the quality of health both for patients and families. The purpose of the program was to initiate changes in methods and organizations that would result in an enhanced quality of care and life for patients and relatives. The program is based on the definition made by the World Health Organization (WHO, 2003; 2004), stating that the aim of palliative care is to reduce suffering and maximize quality of life without hastening or delaying death. It shall be an integral part of care that can be performed in all settings— such as hospitals, special accommodations, or in the patient’s home. One part of the project’s studies (Dahlborg Lyckhage & Lidén, 2010) revealed that prevailing discourses within palliative care in hospitals are a barrier to the implementation of a person-centered care. The aim of the present study was to describe and interpret the meanings of being the primary caregiver of a close one who is terminally ill.

METHOD Our study has a qualitative approach, based on a life-world perspective and on Lindseth and Norberg’s (2004) phenomenological hermeneutic method, developed for nursing research. This method is based on the writings of Paul Ricoeur (Ricoeur, 1976, 1998). According to Ricoeur (1998), speech can be transcribed into text as fixed and will then have an autonomous status. It is as if the author’s voice has left and that the body of the text now is open for the reader to interpret. In doing so, the interpreter, when reading the texts, moves dialectically between various attitudes; i.e., guessing, distancing, explanation, validation, understanding, appropriation, and finally mediation of findings. This process takes place as a movement through the hermeneutic circle, through the events and meanings disclosed in the text. Thus, our analysis process was carried out as a movement back and forth in the following steps: naïve interpretation, structural analysis (of various forms), and finally a comprehensive understanding.

Data Collection and Settings/Procedure Data were collected during the autumn of 2006 through qualitative research interviews (Kvale, 1994) and using a narrative approach. The research consists of tape-recorded in-depth interviews with five women and one man living in the western part of Sweden. The interviewees in the present study

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were invited to participate by the home care nurse, in charge of the care of the interviewee’s loved one. The nurses each represented one of the three communities that were involved in the LPCP, a local palliative care program. The purpose of the LPCP was to contribute to changes in working methods and organization that would result in enhanced quality of care and life for patients and relatives. It was initiated by the municipalities, primary health care, and hospitals in the southwest of Sweden and presented as a policy document in 2003. The new methods were then implemented at local levels in various settings; i.e., hospital, primary health care, and home nursing (LPCP, 2003). The nurses were asked to select a person that had rich experiences of the research phenomenon and who they considered being able to articulate that lived experience. The caregivers were contacted by the home care nurse and received a written invitation that gave information about the project and how to contact the researchers if they were interested in participation. This process enabled the caregivers to make their decision about participation in private and the nurses did not know whether they chose to enroll. This means that researchers, nurses, and home care managers had no knowledge of how many caregivers declined to participate. However, the caregivers who volunteered and contacted the researchers represented the three various communities that took part in the evaluation program. The participants had in common that they all cared for, or had cared for, their close ones in the palliative phase of their illness. Moreover, they were the primary caregiver at home, and varied in age and experience of caregiving. Four of the interviewees were retired and two were self-employed, in shopkeeping and in farming. Five interviewees were the spouses of the person who was terminally ill (n = 2) or had passed away (n = 3). In the latter situation the interviews were collected 6 to 10 months after the death. The recorded interviews lasted from 50 to 75 minutes. Each interview started with an open-ended question: “Could you please tell me about your experiences from the time when your loved one was terminally ill as well as the time afterwards;” or “Could you please tell me about your experiences of being closely related to a person who is terminally ill?” Follow-up questions were used to deepen or clarify a part or an expression in the interviewee’s story. The interviewees were also encouraged to contact the researcher if they wanted to tell more afterwards. The tape-recorded narratives were then transcribed verbatim to form a text.

Data Analysis The first step, a naïve interpretation, is a subjective, intuitive but superficial understanding of the whole that becomes the starting point for the following steps in the interpretation. The next step is the structural analysis which can be performed in various ways; i.e., thematic and/or narrative. Our first

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structural analysis is an example of narrative analysis whereas the second is thematic. The text is examined in an objective (striving to control preunderstandings) and explanatory way, focusing on the parts of the text and internal relations or narrative structures. The last step in the analysis process is assembling the parts and putting them back together into a new whole;; i.e., presenting a comprehensive whole and addressing it to a new audience (Lindseth & Norberg, 2004). The method has earlier been used, especially in the Scandinavian countries, in research focusing on palliative care ( Johansson & Lindahl, 2012) and home care (Lindahl, Sandman, & Rasmussen, 2005).

Ethical Considerations The research study was approved by the Ethics Committee at the Sahlgrenska Academy, University of Gothenburg (Approval No. 200-05). Informed consent was obtained after the interviewees had received written and verbal information about the study from their allocated home care nurse. One of the researchers telephoned the interviewee and booked a time and place for the interview. On this occasion they were once again informed about the aim of the study and that their narratives would be treated confidentially. All interviewees preferred to be interviewed at home. They also signed a written document giving informed consent. As we were aware that the interview might re-open feelings of sorrow and sadness, the interviewees were told that they could telephone the researcher to get additional support or if there was something they wanted to add or exclude from the interview.

FINDINGS A naïve interpretation is a first grasp or a qualified guess concerning the whole or the message in a text. The text from interviews with primary caregivers in palliative home care was examined according to this process.

Naïve Interpretation of Our Text Being the caregiver of a loved one who is terminally ill, at home, is a lifechanging event that suddenly interrupts the patterns of ordinary life. It means being thrown into the role of being the one responsible for a loved one’s physical care. It means putting oneself and one’s own needs aside, and also opening up your home to support from professional health care workers. It means a social, material, and existential change that forces the caregivers to a new course in life. Above all, it means a need to be listened to and an awareness that your situation is visible to others.

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First Structural Analysis: A Constructed Narrative The next step was to examine this initial understanding further through scrutinizing the events that initiated this change. All transcripts were considered and analyzed according to story lines. A composite story (Lindahl et al., 2005) was constructed comprehending the meanings of the biological interruption that stroke ordinary everyday life. We present the story in an imaginary first person voice.

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THE NARRATIVE: WHEN ILLNESS GETS A GRIP ON EVERYDAY LIFE Even if my loved one had been experiencing chronic illness for many years, it was like being struck by lightning when the fatal disease entered our life. We had dreams about a good, long life and growing old together. First we visited our health care service several times and finally got some tests done without receiving any clear answers. Finally, what the physician told us at the hospital definitely broke our dream. They started treatment immediately, which this gave us some respite, and my loved one got better. Then suddenly deterioration entered our world. Pain, fever, anxiety, loss of mobility, and the need for help with personal hygiene increased. Then there was further deterioration which forced us to revisit the hospital and my loved one to stay there. Those admissions to hospital happened frequently during this time. After discharge, wires and tubes were put into my loved one’s body. These procedures were new to me and I had to learn to provide personal care along with my everyday work. I was supposed to assist with the need to urinate, emptying stool, and also wound care. My loved one’s body became unbounded and vomit and diarrhea became a part of my daily worries. Various home care staff entered our home. We liked some of them and disliked some. We got help from the palliative care team. No cure but care—as illness finally consumed my loved one’s body.

Second Structural Analysis In order reach a deeper understanding of the new course in life but also to deepen our interpretation, the following structural analysis was carried out as a thematic structural analysis. This step aimed to unfold the meanings of this new course in life. The results of this analysis will be presented in six themes derived from subthemes. The themes derived from the data were: Home stands for sovereign value and health, Encountering caring and uncaring in relation to others, An existential break in relation to self, Hospital as the good illusion, Confronting the sick body, Being in liminality (Table 1). HOME STANDS FOR SOVEREIGN VALUE AND HEALTH Home means being at ease. It is the only place where you maintain an everyday life. However, now there is a new situation that needs to be incorporated

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Encountering caring and uncaring in relation to others

Caring for your suffering loved one Supportive relationships Longings for comfort Keeping up your strength to advocate Being lost in loneliness Feelings of uncaring

Home stands for sovereign value and health

Maintaining an everyday life Home being encroached by others Giving up everyday life Feelings of participation

Hospital as the good illusion

Subthemes A fractured own lived Hospital becomes a vital part of life body Putting yourself aside Longing for hospital to take over Feelings of loneliness responsibility and being left out To mistrust health Feelings of guilt care Being strong and brave Feelings of powerlessness and despair Making your vulnerability visible

An existential break in relation to self

Themes

Learning aspects of bodily care Being forced to take on the role of the carer Being driven to protect the sick Being familiar with caring practices Encountering signs of bodily disease and decay Taking on double responsibilities

Confronting the sick body

Waiting for the unknown Moving toward an ambiguous future A break in life history

Being in liminality

TABLE 1 Presentation of an Overview of the Themes with Subthemes that Worked as a Structure for the Construction of the Composed Story

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into ordinary life. Home is encroached on by others, meaning that it also becomes a place for various health professionals and medical equipment. In some sense this means to give up everyday life at home. “I felt I would never manage, it became an institution, it wasn’t a home any longer …” (told by a 67-year-old widow). The new form of day-to-day living at home could also bring feelings of participation, joy, and a cheerful atmosphere. If you can relate to the intruder, the feeling of at-homeness is maintained. A 53-year-old woman said, “We had a girl who was here the most, and we got along well and had fun, too … it was important.”

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ENCOUNTERING CARING AND UNCARING IN RELATION TO OTHERS Being at home, caring for your suffering loved one, implies a need for close relationships with other people. These relationships must be supportive and be offered by family, relatives, friends, and professionals. One interviewee talked about some friends: “They are so wonderful. They visited us one Thursday afternoon; they brought dinner, set the table, and then they opened a bottle of wine” (told by a 67-year-old female caregiver). Relationships sustain friendships but the illness also creates new ones. A caring relationship has the strength to satisfy longings for comfort and helps to keep up your strength to advocate for your loved one. Without these important relations, you are left outside, lost in loneliness with feelings of uncaring. One participant stated: “I was so frightened I just walked around in the apartment … . And I didn’t think, somehow that I might have called and asked someone to come here M” (told by a 74-year-old widow). AN EXISTENTIAL BREAK IN RELATION TO SELF The illness broke the trajectory of life in two and in a way created a fracture in our own lived bodies. A 67-year-old-female caregiver expressed it as follows: “I cried and screamed and the nurse came to me and asked me what is the matter and I said it is impossible to give radiotherapy, treatment is useless, there is nothing to do.” To sometimes put yourself in first place is no longer possible; instead you put yourself aside like a situation as if in a bracket, where loneliness and a feeling of being left out rule your private thoughts. Experiencing joy and laughter immediately creates feelings of guilt. One participant, a retired widow, referred to an outing with her daughter: “We should ask someone to come and be with Dad so you can go with us—and I did. But I was remorseful all the time because I could go out and he could not.” There is an absolute need to be strong and brave but in your mind there are feelings of powerlessness and despair and there is a crying out to make your vulnerability visible. “Sometimes I just wanted to lie down and relax … drop everything and just be me” (narrated by a 74-yearold widow).

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HOSPITAL AS THE GOOD ILLUSION When your loved one is seriously ill and life is more fragile, the hospital becomes a vital and important part of life. A 67-year-old widow stated: “that month at the ward was unique.” The dream of the hospital as a beneficial helper leads to a longing for the hospital to take over the responsibility of treatment and care. Simultaneously there is mistrust of how health care will manage to care for your loved one. This was something this interviewee related to: “My God … have to be stupid—the doctor who did not understand and see how sick he was” (told by a 53-year-old caregiver, now a widow).

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CONFRONTING THE SICK BODY When illness occurs, the call for bodily care becomes absolute. Suddenly you find yourself learning aspects of bodily care that you never thought would be possible. A 67-year-old caregiver, now a widow said: “it is obvious you become both a wife and nurse.” This means being forced to take on the role of the carer. How does this happen? This answer lies in being driven to protect the sick. After some time familiarity with these caring practices develops; e.g., removing excrements, feeding, and the dressing of wounds. It means encountering signs of bodily disease and decay as you become a daily, but involuntary, observer of the progress of disease. One participant explained: “It is painful when you need to wash the genitals and grease them, but you really want to help one another, if you can only manage” (told by a 67-year-old caregiver). Confronting and caring for a loved one’s body also means taking on the double responsibilities of a professional and a personal mission in terms of balancing employment and everyday work at home with the caring mission. BEING IN LIMINALITY Caring for a loved one at home consists of a waiting for the unknown, something that is often not said aloud or is not permitted to be spoken about. One interviewee reflected: “Sit here and wait for death, that’s the only thing really … . Firstly, it’s no life this … and no future” (75-year-old male caregiver). Another female former caregiver who is now a widow said: “My mother got cancer. We acted in a play, never asked, she said nothing and we said nothing. At that time I thought I’ll never do that again, but now I find myself in that same position.” It is connected with moving toward an ambiguous future that is probably not going to be a shared future. Being in a liminal space means living in loss and in a total and merciless break in life history. “He [loved one] said it immediately when they ended the treatment, that’s it then, there is only one thing left [death]. And we all know that” (62-year-old caregiver).

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Interpretation of the “Whole” The final step in the process of analysis in a phenomenological-hermeneutic strives to comprehend the “parts” to form a new and deeper understanding of the “whole.” This comprehensive whole points to a possible way of beingin-the-world that is unfolded in the face of the text. From the findings the comprehensive understanding is as follows: The meanings of being the primary caregiver for a close one who is terminally ill are interpreted as a being where the caregivers’ everyday life is characterized by a sense of existential loneliness in their caregiving roles. It means creating and fulfilling a mission that is visible but at the same time it means risking that the lived body and personal self will fade away and become invisible. It means to integrate the private with the public but, sadly at the same time, deconstruction of the self into a nothingness. It means awareness that there is no way back but to generate a longing for death to give way. The caring family members said that they found themselves in a void where the road back had been taken away and they could not see what the way ahead would look like. Death becomes a border situation that cannot be avoided but can be mastered. The lives of the caregivers in the study were marked by endurance and uncertainty. During this time they could feel abandoned; left alone with too much responsibility for making the right choices. They were lost in liminality. This way of being can be seen through the lens of the reflections of existential philosophers such as Sartre and MerleauPonty, on being and nothingness (Meyers, 2008).

DISCUSSION The concept of liminality has earlier been used to designate a process (Little, Jordens, Paul, Montgomery, & Philipson, 1998) and as a way of being after being diagnosed with a serious disease (Navon & Morag, 2004). According to Syme (2011), “liminality is rooted in the betwixt/between living/dying as an ambiguous space and self” (p. 152). Our interviewees narrated how liminality was manifested in the everyday life and also how they tried to organize a self that engaged with the liminal space between caring for their loved ones and their forthcoming death. The family caregivers, being in this liminal space and dealing with demanding situations in daily life, adjusted their self-image and stretched limits through “experiences such as ‘forbidden thoughts,’ changed intimacy, and decreasing personal space” (Carlander, Ternestedt, Sahlberg-Blom, & Sandberg, 2011, p. 683). The interviewees said that their lives had taken a social, material, and existential turn that forced them on to a new course in life. They had left their previous life but had not yet been able to replace it with something else; as if they were dwelling in liminality.

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Being in liminality can also be seen as being between a professional and personal mission; our findings also address the interviewees’ frailness connected to the problem of taking on the bodily care of a loved one. Rudge and Holmes (2010) describe how the processes of bodily breakdown can arouse anxiety, fear, and disgust in health professionals even if they are trained for such work. They use the Kristevian concept of abjection (Kristeva, 1982) to describe what happens when the body is no longer clean and proper but in a state of disruption and decay that threaten its physical boundaries. Telling stories is a human activity and illness can be seen as a disruption of that story (Frank, 1995) for both the one who is ill and the caregiver. As a personal caregiver, living with illness, means living with perceptual interruption (p. 56) characterized by feelings of alienation. It also means witnessing pain and bodily changes that give rise to thoughts that are hard to articulate as bodily aspects often are silenced (Lawler, 1997; Rudge & Holmes, 2010). The motive for moving professional health care from hospitals to the home is the idea that the home is the ideal and most salubrious and ideal place for recovering from illness (Exley & Allen, 2007; Lindahl, Lidén, & Lindblad, 2009) and also the place for care at the end of life (Swedish National Board of Health and Welfare, 2007). The focus in this study was the family carers and their experiences of caring for their loved ones. While they cared for their loved one their former life became deconstructed and nonaggregated. Giddens (1991) highlights the importance of storying the person forward to a new postliminal wisdom, something that is described by Turner (1969) as “aggregation of words and sentences.” We think that the professional nurse can have an important role in storying the family caregiver. Both Giddens and Turner’s ideas add meaning and depth to the concept of liminal space, something that can help in understanding the ongoing self-narratives of the dying person. And, according to our interpretation, it may also be applied to the situation of the caregiver. Syme (2011) claims that liminality is a selfshaped and expertise-mediated space that pertains to people’s capacity and willingness to re-story themselves (p. 112). In other words, the liminal space is coconstructed by the individual and the health care system. It is important that the individual does not lose or falter in their narrative line and that the professionals listen to the stories and support them.

Implications for Practice When reflecting on our findings, what new possibilities for nursing and other professional carers do they indicate? As in previous studies, family caregivers here considered themselves primarily responsible for providing the care for their dying relatives (Carlander et al., 2011; James, Andershed, & Ternestedt, 2007). Patients being cared for at home in a palliative setting had many

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emergency hospital admissions (Andersson et  al., 2007; Jakobsson et  al., 2006). The interviewees in our study saw the hospital as the good illusion and to a great extent hope was linked to professional health care. There seemed to be differences between the primary caregivers and the health professionals’ interpretations of what kind of support the carer needed. As the experts’ language codifies the knowledge and power within the health care organizations (Foucault, 1989), the caregivers’ discourse becomes subordinated given that it is through the medical lens of power that patients and their caregivers’ narratives are interpreted. Discourses in palliative care often seem to be medical with a curing perspective rather than constructed from a caring perspective (Dahlborg Lyckhage & Lidén, 2010; Syme 2011). The primary caregiver has to be allowed to keep their narrative threads intact as far as possible. We suggest in line with Stanley and Hurst (2011) that workshops, seminars, and supervision groups ( Johansson & Lindahl, 2012) that develop and use storytelling and narrative as training tools are important. Listening, telling, or writing stories enables practitioners to connect with their own, patients, and relatives’ views and experiences of mortality. Palliative home care demands care that is person-centered. This approach is based on who the person is, and his/her context, which includes history, family and loved ones, and individual strengths and weaknesses. In person-centered care the patients’ narrative is important for enabling collaboration and a shared decision making between the patient and the professional (Ekman et  al., 2011). According to Lynch, Dahlin, Hultman, and Coakley (2011), a therapeutic relationship allows the nurse to know the patient and family as partners in caring. Hence the nurse is required to respect that the patient is an expert on his/her situation, affirming that there is a greater sense of “shared responsibility” between the person and the health care system. In future research it will be important to focus on the strategies used by the professional nurse working within palliative care when concentrating on both the dying patient and the caregiver. Moreover, if and how caregivers continue their self-narrative, and whether the balance of power changes in discourses of palliative home care or whether the expert-dominated system will resist such change also need to be examined.

Limitations of the Study How can we claim that our interpretation and our way of presenting the findings; i.e., as a new story and in a fictive voice, represent sound research? First, we collected what we believe are true narratives from the interviewees. Ricoeur (1998) stresses the importance of using everyday language and the power that narrative discourses have on the audience, in this case the readers of the report. As hermeneutics is about mediation, we chose the narrative form as one way of mediating our findings so that they would invite the

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reader to appropriate them. To compose stories may seem as more artistic than a scientific way of presenting research findings. In phenomenological hermeneutics a poetic language has an advantage (Lindseth & Norberg, 2004) in that it conveys an understanding close to the lived experience. Second, the interpretation followed a very strict analytical process (Lindseth & Norberg, 2004) where probable interpretations were critically considered. The various structural analyses, performed with an objective and explanatory approach, serve as a mean of validation and justify the interpretive subjective opening phase of the analysis (Ricouer, 1976). A text is always open to several interpretations but we argue that because of our rigorous analytical work in trying to disclose a possible meaning revealed in face of the text, ours is the most probable. We did not use a member-check technique in the analysis process as interpretation means abstraction and thematic work and had we done so the participants would have had problems recognizing their own contribution. However, the interviewees were encouraged to contact us if they wanted to read their transcript to add or delete some content. One of the participants did this and then confirmed the text. One may criticize our research for having a sample that is too small. We consider a person who is involved in or have been involved with caring for a dying loved one as a vulnerable research person (Liamputtong, 2007). The conversation is of sensitive matters and therefore it is impossible to set a precise route to follow concerning the data collection process and numbers of participants. There was also a 3-month time limit set for the data collection process due to the program, which made it impossible to wait for more participants to contact us. However, we received rich and thick descriptions from each interviewee and this enabled a deep and careful analysis. As findings from qualitative research are not to be generalized, a small sample is sufficient. Moreover, a deep analysis and a thorough presentation will enhance the readers’ understanding of their own practice. Our backgrounds are in nursing but we are experienced nurse researchers, both regarding the palliative field and the research method (Dahlborg Lyckhage & Lidén, 2010; Lindahl et al., 2011; Johansson & Lindahl, 2012).

CONCLUSION There is an impending risk of being abandoned when one is the caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken needs. This is important concerning bodily care and the medical treatment regimen in particular. When friends and relatives are absent there is an ethical demand (Lögstrup, 1992) for professional caregivers to compensate for this lack and to meet these needs.

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Living in liminality--being simultaneously visible and invisible: caregivers' narratives of palliative care.

Palliative care is an integral part of care and takes place in many settings--including the home, special accommodations, and hospitals. However, rese...
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