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  • 1.
    Andershed, Birgitta
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Being a close relative of a dying person: development of the concepts "involvement in the light and in the dark"2000In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 23, no 2, p. 151-159Article in journal (Refereed)
    Abstract [en]

    The current study is based on an earlier article in which relatives' involvement in care was described as involvement in the light or involvement in the dark. Involvement in the light was characterized as the relative being well informed and experiencing a meaningful involvement. The relatives involved in the dark felt uninformed, that they were groping around in the dark when they tried to support the patient. The present study analyzed further the meaning of involvement in the light and involvement in the dark, and investigated whether two different care cultures, the relationship with the staff, and a rapid course of illness influence the involvement of relatives. Relatives of 52 patients who died, 30 at a surgical department and 22 in a hospice ward, were interviewed after the patients' deaths. All the relatives of the patients in the hospice ward and 13 of those in the surgical department were judged to be involved in the light. Of the relatives judged to be involved in the dark, 12 either had a sick relative with a rapid course of illness or felt that the sick relative had died unexpectedly. A pattern was clearly observed: The relatives involved in the light described being met with respect, openness, sincerity, confirmation, and connection, whereas the opposite was experienced by those involved in the dark.

  • 2.
    Andershed, Birgitta
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Development of a theoretical framework describing relatives' involvement in palliative care2001In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 34, no 4, p. 554-562Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    The present study is based on four earlier studies in which the authors classified the relative's involvement in palliative care into different categories and described the involvement as "involvement in the light" or "involvement in the dark".

    AIM:

    The aim of the study was to develop a theoretical framework concerning the involvement of relatives based on an in-depth analysis of the results of the four earlier studies.

    METHOD:

    Walker & Avant's (1995) strategies for theory construction were used for development of the framework. A number of different concepts, assumptions and statements about relatives' involvement were penetrated in an in-depth analysis.

    RESULTS:

    From the concepts two theoretical "blocks" of the relatives' involvement were developed and these constitute the foundation for the framework. One is based on concrete descriptions of the concepts "to know", "to be" and "to do". The other describes how the concepts of "involvement in the light" and "involvement in the dark" differ. Factors that promoted involvement in the light were professional care based on humanistic values, a stronger sense of coherence on the part of relatives, an appropriate illness trajectory, and other available resources. The opposite was the case for those who were involved in the dark. Five assumptions successively developed which together form the theoretical framework.

    CONCLUSIONS:

    An important conclusion that can be of importance in palliative care is that the manner in which the staff act toward the patient and relatives influence relatives' possibilities for involvement, patients' possibilities for an appropriate death, and the possibilities the staff have to give good care.

  • 3.
    Andershed, Birgitta
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Involvement of relatives in care of the dying in different care cultures: development of a theoretical understanding1999In: Nursing Science Quarterly, ISSN 0894-3184, E-ISSN 1552-7409, Vol. 12, no 1, p. 45-51Article in journal (Refereed)
    Abstract [en]

    A prerequisite for the staff to be able to guide relatives through the dying trajectory is that the staff members know what the relative wants and can do. The aim of this study was threefold: (a) to identify and categorize family members' involvement in the care of a dying relative, (b) to develop a theoretical understanding of their involvement, and (c) to discuss the congruence or incongruence between the empirical results and key concepts in Swanson's and Watson's theories of caring. The results show that the relatives' involvement could be classified into three categories: to know, to be, and to do. Good correspondence was found between these three categories and key concepts in Swanson's and Watson's theories of caring.

  • 4.
    Andershed, Birgitta
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Involvement of relatives in the care of the dying in different care cultures: involvement in the dark or in the light?1998In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 21, no 2, p. 106-111Article in journal (Refereed)
    Abstract [en]

    The aim of this prospective study was to increase existing knowledge about the involvement of relatives in care of the dying and to shed light on the relatives' sense of coherence. Six relatives were followed via qualitative interviews during the patients' final period of life and after their deaths. The patients died in different forms of care: surgical department, nursing home, inpatient hospice ward, and at home. What the relatives had in common was that they had, in different ways, followed the patient from the first symptoms, through different forms of care, up until death. Some participated very actively in the care. Relatives' involvement in care can be described as involvement in the light or involvement in the dark. Involvement in the light is based on a trusting relationship between the family and the staff. Involvement in the dark is based on insufficient interplay and collaboration, in which the relatives are not seen or acknowledged by the staff, but instead must grope around in the dark when they try to support the patient. Rapid course of illness can be a risk factor for involvement in the dark. It seems that the relatives' sense of coherence was an important factor enabling them to be involved in the light. Humanistic care can constitute a buffer, thereby increasing the possibilities for relatives to be involved in the light.

  • 5.
    Andershed, Birgitta
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Patterns of care for patients with cancer before and after the establishment of a hospice ward1997In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 11, no 1, p. 42-50Article in journal (Refereed)
    Abstract [en]

    A majority of people die in acute hospital care, in a culture of quickness primary aimed at curing. There are indications that hospice care in various forms will spread during the present decade in Sweden. The hospice philosophy contributes to a culture of slowness, where the patient is not only allowed but is encouraged to live at his own pace. As a first step in establishing for whom hospice inpatient care is the best alternative, patient flow to a newly started hospice ward was studied. All patients (n = 1464) who died at the Medical Centre Hospital with a primary diagnosis of cancer during the period of study were compared regarding place of death, diagnosis, gender, age and length of the last period of care. The year before the ward was established, 82% of patients died in acute hospital care compared with 59% during the hospice ward's third year of operation. A total of 315 patients (22%) died in the hospice ward during the study period. The percentage of these patients over the age of 80 was significantly higher (p = 0.0001), and they also had a longer continuous final period of care. More women (57%) than men (43%) were cared for at the hospice ward. The hospice ward has in this way influenced the pattern of care in the hospital.

  • 6.
    Andershed, Birgitta
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    The illness trajectory: for patients with cancer who died in two different cultures of care1998In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 37, no 4, p. 251-272Article in journal (Refereed)
    Abstract [en]

    The aim of this study has been to retrospectively examine the illness trajectory for a consecutive group of sixty-seven patients with cancer who died at a surgical department or were referred from there to an inpatient hospice ward where they died. Relatives of fifty-two patients were interviewed after the patient's death and all sixty-seven medical records were studied. The data was analyzed with support of Glaser and Strauss' concept of a dying trajectory. A surprising result was that as many as forty-four patients had a short trajectory, and nineteen of these had one month or less between diagnosis and death. Patients at surgical wards followed a faster trajectory and were in a somewhat poorer state of health when compared to patients at the inpatient hospice ward. In the case of trajectories within three months, there is no time to lose, and it is important that caring delay are avoided.

  • 7.
    Blomberg, Karin
    et al.
    Örebro University, Department of Nursing and Caring Sciences. Karolinska Institutet, Dept of Nursing, Stockholm.
    Carol, Tishelman
    Karolinska Institutet, Dept of Nursing, Stockholm; Stockholms Sjukhem Foundation, Research & Development Unit, Stockholm.
    Britt-Marie, Ternestedt
    Örebro University, Department of Nursing and Caring Sciences. Ersta Sköndal University College, Stockholm.
    How do women reason about choosing not to participate in population-based cervical cancer screening in Sweden2005In: European Journal of Cancer Supplements, ISSN 1359-6349, E-ISSN 1878-1217, Vol. 3, no 2, p. 451-451Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of the study is to investigate the manner in which women who choose not to participate in a population-based cervical cancer screening program (PCCSP) reason about their decision.

    Method: All women between 23 and 60 years of age, residing in Stockholm county council receive an invitation from the regional Oncological Center (OC) to attend PCCSP at regular intervals. Women who actively contacted OC to report that they do not wish to participate in PCCSP were the subjects for the study. Data was collected through unstructured telephone interviews with 11 women and fax messages from 86 women. Data analysis is inspired by interpretive description.

    Results: Preliminary analysis indicates that two salient themes are related to the division of responsibility for health maintenance between the individual and society, as well as the manner in which women described being able to 'know' one's own body. Descriptions include not wanting to know if one has cancer, previous negative experiences in relation to screening that led to feeling self-exposed and insulted, beliefs that a healthy lifestyle could protect one from cancer and a standpoint that the screening program represents undesired societal control of private issues. A relationship with one's own gynaecologist was described as important and as one reason for not attending PCCSE Reasoning was also influenced by conceptualizations of sexuality.

    Conclusion: Cervical cancer screening can be viewed as a relatively simple routine check-up, but for the individual woman it may also involve a sensitive situation, with both the risk of a life-threatening sickness and an intimate physical examination. In order to improve PCCSP, it is important to highlight different perspectives on screening, and perspectives from women who have chosen not to attend are essential.

  • 8.
    Blomberg, Karin
    et al.
    Örebro University, School of Health and Medical Sciences.
    Forss, Anette
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences.
    Tishelman, Carol
    From 'silent' to 'heard': professional mediation, manipulation and women's experiences of their body after an abnormal Pap smear2009In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 68, no 3, p. 479-486Article in journal (Refereed)
    Abstract [en]

    While there is a large body of research on cervical cancer screening, fewer studies address the experiences of women receiving abnormal Pap smear results after routine screening. Those studies highlighting such experiences tend to concentrate on resulting psychosocial distress, with an absence in the literature about women's experiences of their bodies during medical follow-up for dysplasia, and no studies were found that explore such experiences over time. In this article, we focus on bodily experiences over time during medical follow-up of an abnormal Pap smear among a group of women in Sweden. This qualitative analysis is based on interview data from a total of 30 women, and with in-depth analysis of the content of 34 transcribed interviews with nine women who were followed longitudinally. We found that medical follow-up involved an experience of both "having" and "being" a body, which changed over time. Women described a process that ranged from having a cervix that was neither felt, 'heard', nor seen, to having a body that became known to them first indirectly through professional mediation and later through direct experience after professional manipulation. The conceptualization of bodily boundaries appeared to change, e.g. through visualization of the previously unfamiliar cervix, pain, vaginal discharge, and bleeding, as well as linkages to the bodies of women in their extended families through the generations. Thus, bodily experiences appear to be an intrinsic part of medical follow-up of an abnormal Pap smear through which health, disease, and risks in the past, present, and future were reconceptualised. (C) 2008 Elsevier Ltd. All rights reserved.

  • 9.
    Blomberg, Karin
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marle
    Örebro University, Department of Health Sciences.
    Törnberg, Sven
    Tishelman, Carol
    How do women who choose not to participate in population-based cervical cancer screening reason about their decision?2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 6, p. 561-569Article in journal (Refereed)
    Abstract [en]

    In Stockholm, Sweden, women are invited to a cost-free population-based cervical cancer screening programme (PCCSP) at regular intervals. Despite this, many women choose not to attend screening at all or to take opportunistic tests instead. This study explores bow women who actively declined participation in the PCCSP reasoned about their choice. Qualitative telephone interviews and fax, messages from women who actively declined participation in the PCCSP were analysed inductively. The manner in which women defined and conceptualized distinctions between, and the roles and responsibilities of, both private and public spheres were found to be central in explanations of decision making. Factors related to women's decisions not to participate in screening at all include a lack of confidence in the benefits of screening, previous negative health care and preventive experiences, a belief in one's own ability to discern health changes or a belief that one was not at risk for cervical cancer, as well as a number of unconventional standpoints on social and political issues. Women who chose not to participate in the organized PCCSP, but who did use private opportunistic screening, generally motivated this with direct or indirect criticism of the screening programme itself. Not only was the examination itself sensitive but also all facets of the PCCSP, from invitation letter on, were found to influence women's decisions. Using Jepson et A's ethical framework to peruse the evidence-base underlying women's 'informed decision-making' about CCS is suggested to be more constructive than discussing potential participants' knowledge versus lack of knowledge.

  • 10.
    Blomberg, Karin
    et al.
    Örebro University, Department of Nursing and Caring Sciences. Karolinska institutet.
    Tishelman, Carol
    Karolinska Institutet.
    Britt-Marie, Ternestedt
    Örebro University, Department of Nursing and Caring Sciences. Ersta Sköndal högskola.
    Tension between the Public and Private: How women who choose not to participate in population-based cervical cancer screening reason about their decision2006In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 15, no 2, p. 432-Article in journal (Refereed)
  • 11.
    Blomberg, Karin
    et al.
    Örebro University, School of Health and Medical Sciences.
    Tishelman, Carol
    Ternestedt, Britt-Marie
    Törnberg, Sven
    Leval, Amy
    Widmark, Catarina
    How can young women be encouraged to attend cervical cancer screening?: Suggestions from face-to-face and internet focus group discussions with 30-year-old women in Stockholm, Sweden2011In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 50, no 1, p. 112-120Article in journal (Refereed)
    Abstract [en]

    Background. Cervical cancer screening (CCS) using Pap-smears has been carried out for decades and is still an essential tool for secondary cancer prevention. Focus has traditionally been on what hinders women's attendance, instead of researching this issue from a positive standpoint, i.e. what factors encourage women to take a Pap-smear? In this article, we therefore explore issues that 30-year-old women have addressed as encouraging CCS attendance, with particular focus on aspects susceptible to intervention. Material and methods. Through the population-based cervical cancer screening (PCCSP) registry in Stockholm, Sweden, a stratified random sampling technique was used to recruit women from the same birth cohort with varied CCS histories and results. Nine face-to-face focus groups discussions (FGDs) and 30 internet-based FGDs were conducted with a total of 138 women aged 30. Qualitative analysis was inspired by interpretative description, to generate clinically relevant and useful data. Results. In general, these women expressed positive views about the PCCSP as an existing service, regardless of screening history. They described a wide range of factors encompassing the entire screening trajectory from invitation through follow-up which could motivate young women to CCS participation, including social marketing. Many of the suggestions related to individualization of the PCCSP, as well as a need to understand the relationship between human papilloma virus (HPV) and cervical cancer. Discusssion. These results are discussed in terms of the inherent tension between population-based public health initiatives and individually-oriented health care provision. Many suggestions given are already incorporated into the existing Stockholm-Gotland screening program, although this information may not reach women who need it. New research should test whether systematic information on HPV may provide a missing link in motivating young women to attend CCS, and which of their suggestions can serve to increase CCS participation.

  • 12.
    Blomberg, Karin
    et al.
    Örebro University, School of Health and Medical Sciences.
    Widmark, Catarina
    Ternestedt, Britt-Marie
    Törnberg, Sven
    Tishelman, Carol
    Between youth and adulthood: focus group discussions with 30-year-old women about cervical cancer and its prevention in urban Sweden2011In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 34, no 3, p. e11-e20Article in journal (Refereed)
    Abstract [en]

    Background: Although there is a significant amount of research on cervical cancer screening (CCS), few studies address screening experiences of women related to reasoning about health maintenance and disease prevention in general. Research tends to neglect experiences in different phases of life and experiences of women with different screening histories. Recent literature primarily focuses on adolescents targeted for human papilloma virus vaccinations, whereas perspectives of women who need continued CCS are lacking.

    Objective: The aim of the study was to explore how 30-year-old women reason about health, ill health, health maintenance, and disease prevention, in relation to cervical cancer, its prevention, and screening.

    Methods: Through a population-based CCS registry, we randomly sampled women to attend focus group discussions stratified by previous patterns in screening history and test results. Data from 38 attendees were inductively analyzed.

    Results: Women’s discussions encompassed temporal aspects of the past and the future, with youth in the rearview mirror and the demands of adulthood ahead. Matters related to sickness, including cancer and its prevention, were described as distant and not prioritized in this phase of life. This situation was compounded by lack of relevant information about cervical cancer and screening.

    Conclusions: The manner 30-year-old women self-defined themselves in the transition between youth and adulthood appears to strongly influence their reasoning about CCS and other forms of health maintenance and disease prevention.

    Implications for Practice: Cervical cancer screening programs are challenged to adapt both information and organizations to new cohorts of women with different needs and life situations.

  • 13.
    Blomberg, Karin
    et al.
    Örebro University, School of Health and Medical Sciences.
    Widmark, Catarina
    Karolinska Institutet.
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences. Ersta Sköndal Högskola.
    Törnberg, Sven
    Karolinska sjukhuset.
    Tishelman, Carol
    Karolinska Institutet.
    Young women's reasoning about cervical cancer, its causes, and prevention2008In: Gender Medicine, ISSN 1550-8579, E-ISSN 1878-7398, Vol. 5, no 3, p. 342-343Article in journal (Refereed)
  • 14.
    Carlander, Ida
    et al.
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Hellström, Ingrid
    Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    The modified self: family caregivers’ experiences of caring for a dying family member at home2010In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 7-8, p. 1097-1105Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home.

    Background: Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image.

    Design: Qualitative descriptive study.

    Methods: Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description.

    Result: Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space.

    Conclusions: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home.

    Relevance to clinical practice: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.

  • 15.
    Carlander, Ida
    et al.
    Karolinska institutet, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences. Ersta Sköndal högskola, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Hellström, Ingrid
    Linköpings universitet, Linköping, Sweden.
    Sandberg, Jonas
    Ersta Sköndal högskola, Stockholm, Sweden.
    Being me and being us in a family living close to death at home2011In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 21, no 5, p. 683-695Article in journal (Refereed)
    Abstract [en]

    We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual’s self-image, or “me-ness.” This pattern was present at the same time as the pattern of “being us,” or in other words, being a family, and dealing with impending death and a new “we-ness” as a group. “Striving for the optimal way of living close to death” was the core theme.

  • 16.
    Carlander, Ida
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Hellström, Ingrid
    Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
    Sandberg, Jonas
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Four aspects of self-image close to death at home2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 6, no 2, article id 5931Article in journal (Refereed)
    Abstract [en]

    Living close to death means an inevitable confrontation with one’s own existential limitation. In this article, we argue that everyday life close to death embodies an identity work in progress. We used a narrative approach and a holistic-content reading to analyze 12 interviews conducted with three persons close to death. By illuminating the unique stories and identifying patterns among the participants’ narratives, we found four themes exemplifying important aspects of the identity work related to everyday life close to death. Two of the themes, named ‘‘Inside and outside of me’’ and ‘‘Searching for togetherness,’’ represented the core of the self-image and were framed by the other themes, ‘‘My place in space’’ and ‘‘My death and my time.’’ Our findings elucidate the way the individual stories moved between the past, the present, and the future. This study challenges the idea that everyday life close to impending death primarily means limitations. The findings show that the search for meaning, new knowledge, and community can form a part of a conscious and ongoing identity work close to death.

  • 17. Dwyer, Lise-Lotte
    et al.
    Nordenfelt, Lennart
    Ternestedt, Britt-Marie
    Three nursing home residents speak about meaning at the end of life2008In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 15, no 1, p. 97-109Article in journal (Refereed)
    Abstract [en]

    This article provides a deeper understanding of how meaning can be created in everyday life at a nursing home. It is based on a primary study concerning dignity involving 12 older people living in two nursing homes in Sweden. A secondary analysis was carried out on data obtained from three of the primary participants interviewed over a period of time (18-24 months), with a total of 12 interviews carried out using an inductive hermeneutic approach. The study reveals that sources of meaning were created by having a sense of: physical capability, cognitive capability, being needed, and belonging. Meaning was created through inner dialogue, communication and relationships with others. A second finding is that the experience of meaning can sometimes be hard to realize.

  • 18.
    Ek, Kristina
    et al.
    School of Health and Education, University of Skövde, Skövde, Sweden.
    Andershed, Birgitta
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Nursing, Gjøvik University College, Gjøvik, Norway.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Britt-Marie, Ternestedt
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    “The unpredictable death”: The last year of life for patients with advanced COPD: Relatives’ stories2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 5, p. 1213-1222Article in journal (Refereed)
    Abstract [en]

    Objective: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

    Method: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

    Result: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

    Significance of Results: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

  • 19.
    Ek, Kristina
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study2008In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 62, no 4, p. 470-478Article in journal (Refereed)
    Abstract [en]

    Title. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study Aim. This paper is a report of a study to describe the essential structure of the lived experience of living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease. Background. Chronic obstructive pulmonary disease is one of the most common diseases throughout the world. Shortness of breath, fatigue and cough are the most troublesome symptoms, and living with COPD often imposes limitations on daily living. The disease has a great impact on quality of life and affects the extent to which people can be active in daily life. Methods. We conducted qualitative interviews of eight people with COPD and collected data over a 2-month period in 2003. Our patients were recruited from two pulmonary disease clinics in West Sweden. We used a phenomenological methodology to analyse the interviews. Findings. Daily life for people with COPD is affected in several different ways. The patients described how their physical limitations forced them to refrain from meaningful activities in everyday life and led to social isolation. Everyday emotions vacillated between viewing life as meaningful and meaningless. A sense of involvement and the belief that life was meaningful gave the individual the energy and the desire to continue living and to envision a future. Conclusion. Nursing care should include support and facilitation, so that patients can live rather than exist to the end of their lives. It is important to learn from patients and tailor activities to their social, existential and physical priorities, where appropriate family-centred support may be most effective. © 2008 Blackwell Publishing Ltd.

  • 20.
    Ek, Kristina
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal Universtity College, Stockholm, Sweden; Department of Neuroscience and Society, Research and Development Department, Karolinska institutet and Stockholms Sjukhem Foundation, Stockholm, Sweden. .
    Andershed, Birgitta
    Örebro University, School of Health and Medical Sciences.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Shifting life rhythms: couples' stories about living together when one spouse has advanced chronic obstructive pulmonary disease2011In: Journal of Palliative Care, ISSN 0825-8597, Vol. 27, no 3, p. 189-197Article in journal (Refereed)
    Abstract [en]

    Aim: This study examines couples' experiences of living together when one partner has advanced chronic obstructive pulmonary disease (COPD).

    Method: Repeated qulitative interviews with four couples over eight-month period, where one spouse in each couple suffered from advanced COPD. The final dataset comprised 19 interviews. A phenomenological-hermeneutical method was used to interpret the interview text.

    Findings: One main theme, "living with the disease and one's spouse in a new and changeable life rhythm", emerged from three subthemes: "living with uncertainty", "living in a changed intimate relationship" and "finding new ways of living together". A mutual sense of comanionship between the spouses facilitated their changes of reshaping their relationship and adapting it to the new life rhythm required by everyday life with the disease.

    Conclusion: The healthy spouse had major responsibility for the health of their sick spouse. Awareness of the couple's own conceptions and knowledge of health and illness is central to person-focused care, as is awareness of what values are important to them when restructing their everyday life.

  • 21.
    Ekwall, Eva
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Sorbe, Bengt
    Örebro University, School of Health and Medical Sciences.
    Hallgren Graneheim, Ulla
    Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 1, p. 53-58Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to explore what women with recurrent ovarian cancer perceived as important in their communication with the health care team. Method: Interviews were conducted with 12 women at the end of chemotherapy treatment at a department of gynecological oncology in central Sweden. The interviews were subjected to qualitative content analysis. Results: The findings stress the importance for the health care team to offer each woman the opportunity for support in becoming familiar with the disease. This theme of becoming familiar with the disease is underpinned by four sub-themes: being acknowledged as a unique person, getting help to make sense of information regarding the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise was adequate. Becoming familiar with the disease was expressed as a process of understanding and assimilating the whole new situation. To achieve familiarity, the women needed help from the health care team to make sense of the information they received. They stressed the importance of being able to influence encounters with health professionals, in accordance with their own perspectives. Being acknowledged as a unique person was a prerequisite to achieve familiarity. Also important to the women was having the opportunity to share responsibility for their care and lives with someone from the health care team. Conclusion: Helping women with recurrence of ovarian cancer attain a sense of familiarity with the disease should be an important priority for health care providers. (C) 2010 Elsevier Ltd. All rights reserved.

  • 22.
    Ekwall, Eva
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Neurobiology, Caring Sciences and Society, Karolinska Institute, Stockholm, Sweden; Research and Development Department, Stockholms Sjukhem Foundation, Stockholm, Sweden.
    Sorbe, Bengt
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Department of Gynaecological Oncology, Örebro University Hospital, Örebro, Sweden.
    Sunvisson, Helena
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Department of Neurological Medicine, Örebro University Hospital, Örebro, Sweden.
    Lived experiences of women with recurring ovarian cancer2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 1, p. 104-109Article in journal (Refereed)
    Abstract [en]

    Background: Women with recurring ovarian cancer are living longer, due to advances in treatment options. They are now often outpatients, experiencing rapid encounters on treatment days. Whether this shift in care meets women’s needs has been scarcely explored scientifically.

    Purpose of the study: This study aimed to illuminate the phenomenon of living with recurring ovarian cancer as experienced by women in that condition.

    Methods and sample: A descriptive phenomenological method was used. Eight open-ended interviews with four women were performed approximately three and five years after the first recurrence of ovarian cancer. During these years the women had repeated clinically and radiologically verified recurrence requiring chemotherapy.

    Key results:The phenomenon of living with recurring ovarian cancer meant that the women felt forced to pay attention to the failing body in order to avoid a potential breakdown. The growing limitation of their intermittent strength meant that strength had to be captured and protected. Sharing their lives with others was difficult, due to the different living conditions. The women found no space to mediate their experiences, either in close relationships or with health care professionals. But, the circumstances they lived under also generated a gratitude for the unexpected extra time.

    Conclusions: The findings revealed that the four women were grateful to live a while longer, but needed to share their state of being. The findings are indeed directed to health care professionals, who need to provide a more patient-centred care to meet the women’s needs.

  • 23.
    Henriksson, Anette
    et al.
    Örebro University, School of Health and Medical Sciences.
    Benzein, Eva
    Linnéuniversitetet, Växjö, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal högskola, Stockholm, Sweden.
    Andershed, Birgitta
    Örebro University, School of Health and Medical Sciences.
    Meeting needs of family members of persons with life-threatening illness: a support group program during ongoing palliative care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 263-271Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of the study was to describe family members’ experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness.

    Method: The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis.

    Results: The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere.

    Significance of results: The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

  • 24.
    Henriksson, Anette
    et al.
    Örebro University, School of Health and Medical Sciences.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Benzein, Eva
    Linnéuniversitetet.
    Ternestedt, Britt-Marie
    Ersta Sköndal högskola.
    Andershed, Birgitta
    Örebro University, School of Health and Medical Sciences.
    Effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care2012Manuscript (preprint) (Other academic)
    Abstract [en]

    Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report lack of preparation, knowledge and ability to handle the caregiver role with a need for information and psychosocial support.

    Aim: The aim was to investigate effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care

    Design: A prospective quasi-experimental design including an intervention group and a comparison group was used.

    Settings/participants: A support group programme was offered to family members of patients with life-threatening illness during ongoing palliative care at three intervention settings, two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit was used for comparisons.

    Results: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving and rewards of caregiving. No significant changes were shown for hope, anxiety, depression symptoms or health.

    Conclusions: The intervention, including a support group program delivered for family members of persons with life threatening illness during ongoing palliative care proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

  • 25.
    Henriksson, Anette
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Årestedt, Kristofer
    School of Health and Caring Sciences, Linnaeus University, Växjö, Sweden; Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    Benzein, Eva
    School of Health and Caring Sciences, Linnaeus University, Växjö, Sweden; Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Stockholm, Sweden; Research and Development Unit, Stockholms Sjukhem Foundation, Stockholm, Sweden.
    Andershed, Birgitta
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Nursing, Gjøvik University College, Gjøvik, Norway.
    Effects of a support group programme for patients with life-threatening illness during ongoing palliative care2013In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 27, no 3, p. 257-264Article in journal (Refereed)
    Abstract [en]

    Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support.

    Aim: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

    Design: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. Settings/participants: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons.

    Results: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes.

    Conclusions: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

  • 26.
    Håkanson, Cecilia
    et al.
    Örebro University, School of Health and Medical Sciences.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Nyhlin, Henry
    Ersta Hospital, Stockholm.
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences.
    Struggling with an unfamiliar and unreliable body: the experience of irritable bowel syndrome2009In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9824, Vol. 1, no 1, p. 29-38Article in journal (Refereed)
    Abstract [en]

    Aim. To describe the phenomenon living with irritable bowel syndrome from a life-world perspective.

    Background. Ten to twenty per cent of the adult population in the world is known to live with irritable bowel syndrome. The life-world experience of people with irritable bowel syndrome has been paid little attention. A deeper understanding about the phenomenon living with irritable bowel syndrome is of interest for the future development of care.

    Design and methods. The study was performed using a phenomenological method. Data was collected by in-depth, open interviews performed in 2006, with nine persons between 25–55 years, diagnosed with irritable bowel syndrome. The interviews were analysed according to the method of Giorgi.

    Results. Six interrelated key constituents have been identified: Having an altered self-image, feeling ashamed, distrusting the body, feeling tired, blaming oneself, and finding solutions. A structure has been formulated, describing that living with irritable bowel syndrome means struggling with an unfamiliar and unreliable body. Tiredness, distrust, and feelings of shame towards the body bring about limitations in everyday life. At the same time, living with irritable bowel syndrome means having a strong will to exceed the limitations and become familiar with one self.

    Conclusion. This study suggests that living with irritable bowel syndrome means to struggle with an unfamiliar and unreliable body that brings about changes of self-image and limitations in every day life. Feelings of distrust, shame and embarrassment towards troublesome symptoms, are important contributions to the limitations experienced.

    Relevance to clinical practice. Nurses have a major role to play in the care for people with irritable bowel syndrome. A caring perspective, in which the life-world is central, is an important approach to care for these persons. Using the dialogue as a forum where patients can share their unique life-world experiences lets nurses gather knowledge that is essential in helping patients identify and acknowledge new and positive understandings of the lived body.

  • 27.
    Håkanson, Cecilia
    et al.
    Karolinska Institute, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Department of Palliative Care Reserach, Ersta Sköndal University College, Stockholm, Sweden.
    Being in the Patient Position: Experiences of Health Care Among People With Irritable Bowel Syndrome2010In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 20, no 8, p. 1116-1127Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to gain in-depth understanding of what it is like for a person with irritable bowel syndrome to be in the patient position in encounters with health care providers. We conducted qualitative interviews with nine individuals. Our analysis, guided by interpretive description, revealed experiences of unsupportive and supportive encounters. Unsupportive encounters were shaped by humiliation, insignificance, and abandonment. Not feeling believed and acknowledged as persons made the participants lose trust in their own experience, which enhanced their unfamiliar mood of being in the world. Supportive encounters were less prominent. These were characterized by openness and acknowledgment of the patient’s lifeworld. Feeling significant and being listened to promoted feelings of being in a partnered, cocreating relationship. It is reasonable to assume that care originating in the patient’s lifeworld would support the patients to use their strength to manage illness and regain familiarity in everyday life.

  • 28.
    Håkanson, Cecilia
    et al.
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden; Stockholms Sjukhem Foundation, Research, Development and Education Unit, Stockholm, Sweden.
    Nyhlin, Henry
    Gastro Center, Karolinska University Hospital, Huddinge, Sweden.
    Learning about oneself through others: experiences of a group-based patient education programme about irritable bowel syndrome2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 4, p. 738-746Article in journal (Refereed)
    Abstract [en]

    Background: People with irritable bowel syndrome (IBS) often experience severe illness-related troubles in their everyday lives. Many persons also perceive their disease-related knowledge to be insufficient, and they feel dissatisfied with their inability to improve well-being. Previous research about patient education and IBS has emphasized biomedical outcomes of symptoms, health-promoting behaviours, coping and health-related quality of life, rather than people's experiences.

    Aim: To explore people's experiences of participating in a multidisciplinary group-based patient education programme about IBS and of the influence of this programme on everyday life with illness. Methods:  Focus group interviews were performed with 31 persons after their participation in the patient education programme. Interpretive description guided the inductive analysis of data. The study was approved by the local research ethics committee.

    Findings: The analysis revealed four patterns; being part of a safe community, learning about oneself through others, understanding and controlling the body and illness as a whole, and being outside of the community. The pattern of learning about oneself through others can be described as a reciprocal activity of learning by listening to, telling and observing others. Being among similar others had created feelings among most of the focus group participants of being part of a safe community where taboo subjects related to IBS-symptoms could be outspoken. Understanding the body and illness as a whole had enhanced their ability to interpret bodily signals and to handle trouble some situations with greater self-confidence, and this regained their access to the social everyday world.

    Conclusion: The combination of reciprocal sharing of experiences and the provision of professional scientific knowledge during the patient education programme together contributed to a growing readiness to improve well-being in everyday life, for most of the participating individuals. This was based on new understandings of the body and illness as a whole and of new abilities to make knowledge-based decisions about what strategies to use in overcoming illness-related troubles.

  • 29.
    Håkanson, Cecilia
    et al.
    Ersta Hosp, Stockholm, Sweden; Dept Neurobiol Care Sci & Soc, Div Nursing, Karolinska Inst, Stockholm, Sweden.
    Sahlberg-Blom, Eva
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Dept Neurobiol Care Sci & Soc, Div Nursing, Karolinska Inst, Stockholm, Sweden; Dept Palliat Care Res, Ersta Sköndal Univ Coll, Stockholm, Sweden; Res Dev & Educ Unit, Stockholms Sjukhem Fdn, Stockholm, Sweden.
    Nyhlin, Henry
    Gastro Ctr, Karolinska Univ Hosp, Huddinge, Sweden.
    Learning to live with irritabel bowel syndrome: the influence of a group-based patient education programme on peoples' ability to manage illness in everyday life2011In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 3, p. 491-498Article in journal (Refereed)
    Abstract [en]

    Background: Living with chronic irritable bowel syndrome sets limitations in peoples’ everyday lives. This is due to bad health and the difficulty to find strategies that will manage their problem. In encounters with health care providers, these people feel that they are not getting the appropriate support to manage their illness-related troubles, and they perceive themselves to be insufficiently informed about the disease.

    Aim: To evaluate the influence of a group-based patient education programme about irritable bowel syndrome, on people’s ability to manage their illness in everyday life.

    Methods: The study used an evaluative research design. Fifty-one individuals with irritable bowel syndrome completed the ways of coping questionnaire, and the irritable bowel syndrome severity scoring system, before and after participating in a multidisciplinary group-based patient education programme.

    Results: In the participants’ self assessments, statistical significances (p > 0.05) were found for the mean frequency of efforts used on the coping strategies distancing and escape-avoidance. Distancing was used more often after the education programme, while escape-avoidance, was used more seldom. The proportional use of the strategy self-controlling (relative score) was enhanced after the education programme. The participants’ overall severity of symptoms was significantly reduced after the education programme. The individuals with a clinically noteworthy improvement in symptom severity (decrease ≤ 50) had greater changes in relative score values than those that showed a lesser improvement in symptom severity.

    Conclusion: Coping patterns were changed and symptoms were scored significantly less severe among the participants who participated in the education programme. Controlled studies following individuals over a longer period are suggested to establish the validity and sustainability of these changes, and qualitative interview studies would provide additional understanding about the significance of the separate parts of the education programme, and about the meaning of the programme to peoples’ everyday lives as a whole.

  • 30.
    Jackson, Karin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Schollin, Jens
    Department of Paediatrics, Örebro Medical Centre Hospital, Örebro, Sweden.
    Bodin, Lennart
    Örebro University, Department of Nursing and Caring Sciences. Department of Statistics, Örebro University and Örebro Medical Centre Hospital, Örebro, Sweden,.
    Ternestedt, Britt-Marie
    Örebro University, Department of Nursing and Caring Sciences.
    Utilization of healthcare by very-low-birthweight infants during their first year of life2001In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 90, no 2, p. 213-217Article in journal (Refereed)
    Abstract [en]

    New knowledge in perinatal medicine has resulted in increased survival of very-low-birthweight (VLBW) infants. After leaving hospital, the child is seen at regular medical check-ups, but there is often a persistent worry about the child which affects the family as a whole. This can lead to an increased utilization of healthcare. Our objective was therefore to describe the utilization of healthcare by VLBW infants during their first year of life and its relation to high-risk diagnoses in the neonatal period. The study group comprised 36 infants born at gestational ages of < or = 31 wk and with a birthweight of < or = 1500 g, and was compared with a control group of 36 full-term infants. Utilization of healthcare by the VLBW infants was higher than that by the control group in paediatric and ophthalmic outpatient clinics. The total number of contacts with healthcare was on average 38.7 versus 17.4. High-risk diagnoses in the neonatal period did not correlate with utilization of care, except for visits to the paediatric outpatient clinic, especially planned visits. Further studies focusing on how to support these families after leaving hospital are therefore needed.

  • 31.
    Jackson, Karin
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences. Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden.
    Magnuson, Anders
    Clinical Research Centre, Örebro University Hospital, Örebro, Sweden.
    Schollin, Jens
    Department of Paediatrics, Örebro University Hospital, Örebro, Sweden.
    Parental stress and toddler behaviour at age 18 months after pre-term birth2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 2, p. 227-232Article in journal (Refereed)
    Abstract [en]

    AIM: To describe the parent's judgement of their own stress and the child's behaviour at 18 months after pre-term birth and if there are any correlations between these assessments, the morbidity in the neonatal period, the gestational age at birth and the occurrence of twin/triplet births. METHOD: Twenty-one mothers and 19 fathers of pre-term infants answered two questionnaires, The Swedish Parenthood Stress Questionnaire (SPSQ) and The Toddler Behaviour Questionnaire (TBQ). RESULTS: Mothers scored somewhat higher than fathers concerning parental stress. Parents with twins/triplets and of children born in gestational week 25-30 felt more stress, though the differences were not statistically significant. High-risk diagnoses did not correlate to any of the dimensions. The parents judged the behaviour of the children similar except that parents of children born in gestational week 25-30 scored significantly higher for intensity/activity (p = 0.002). The correlation between parental stress and judgement of their children's behaviour did not show any significant association except for the dimension regularity in TBQ (p = 0.016). CONCLUSIONS: The mothers' and fathers' assessments of their own stress and of the children's behaviour were similar. Parents of very pre-term children felt more stress and judged the children somewhat delayed in their social behaviours, probably due to their low gestational age.

  • 32.
    Jackson, Karin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Nursing and Caring Sciences. Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden.
    Magnuson, Anders
    Clinical Research Centre, Örebro University Hospital, Örebro, Sweden.
    Schollin, Jens
    Department of Paediatrics, Örebro University Hospital, Örebro, Sweden.
    Quality of care of the preterm infant: the parent and nurse perspective2006In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 95, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    AIM: To study the subjective opinions about what is important in care at neonatal units and child health centres (CHCs) for premature newborns, and to compare these opinions with the care actually given. SUBJECTS: 21 mothers, 20 fathers and 15 nurses at the neonatal unit, and 21 mothers, 14 fathers and 18 nurses at CHCs.

    METHODS: A questionnaire on quality of Care from the Patient's Perspective was used. It contained three dimensions: identity-oriented approach, medical-technical competence and socio-cultural atmosphere. Each dimension was evaluated in terms of subjective importance and perceived reality of given care.

    RESULTS: In general, subjective importance was rated higher than perceived reality both for neonatal care and care at CHCs for the dimensions identity-oriented approach and medical-technical competence. However, higher ratings were given to neonatal care compared to CHCs for medical-technical competence. High-risk diagnoses and very low gestational age in the newborn did not affect the answers. Mothers rated medical-technical competence higher than nurses for neonatal care. Mothers and nurses rated identity-oriented approach higher than fathers for CHCs.

    CONCLUSION: Although both neonatal care and care at CHCs were highly rated, improvements can be made to fulfil the expectations of parents and nurses. Neonatal units seem to be more efficient in taking care of the special needs of these newborns compared to CHCs. The need for an optimal identity-oriented approach, medical-technical competence and socio-cultural atmosphere could strengthen the possibilities of parents to be confident in their parental role.

  • 33.
    Jackson, Karin
    et al.
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Schollin, Jens
    Development and construction of parental identity in preterm birth: qualitative analysis of mothers' and fathers' narrativesManuscript (preprint) (Other academic)
  • 34.
    Jackson, Karin
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ternestedt, Britt-Marie
    Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden.
    Schollin, Jens
    Department of Paediatrics, Örebro University Hospital, Örebro, Sweden.
    From alienation to familiarity: experiences of mothers and fathers of preterm infants2003In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 43, no 2, p. 120-129Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The birth of a preterm infant has a long-term impact on both parents. Mothers report more stress and poor adjustment compared with fathers. Influencing factors, such as family situation and health status of the child, can support or weaken the coping ability of the parents. Studies on experiences of fathers are sparse.

    AIM: The aim of this research was to study how mothers and fathers of preterm infants describe their experiences of parenthood during the infant's first 18 months of life.

    METHODS: Seven consecutively selected sets of parents of preterm infants born at </=34 weeks of gestation with no serious congenital defects were interviewed 1-2 weeks after the infant's birth and at 2, 6 and 18 months of age, and the findings were analysed using a phenomenological method.

    FINDINGS: Internalization of parenthood was described as a time-dependent process, with four syntheses of experiences - alienation, responsibility, confidence and familiarity. Within the syntheses, similarities in how mothers and fathers described their parental roles involved concern for the child, insecurity, adjustment and relationship with the child. Regarding differences, mothers experienced having more responsibility and control of the care and a need to be confirmed as a mother, while fathers described confidence in leaving the care to the staff and wanted to find a balance between work and family life. Important turning points in parenthood experiences often occurred when the infant could be removed from the incubator, discharged from the ward, and when the infant looked normal compared to full-term infants.

    CONCLUSIONS: The structure of the phenomenon of parenthood was formed by the integration of the syntheses of alienation, responsibility, confidence and familiarity. The structure seems to be based on the parents' expectations of the parental role, the infant's health condition and the health care environment. These interacting factors are influenced by cultural beliefs.

  • 35.
    James, Inger
    et al.
    Örebro University, School of Health and Medical Sciences.
    Andershed, Birgitta
    Örebro University, School of Health and Medical Sciences. Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Gustavsson, Bernt
    Örebro University, School of Humanities, Education and Social Sciences. South African Chair for Education and Development, University of South Africa, Pretoria, South Africa; Centre for Adult and Continuing Education, University of the Western Cape, Cape Town, South Africa.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden; Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Emotional knowing in nursing practice: in the encounter between life and death2010In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 5, no 2, article id 5367Article in journal (Refereed)
    Abstract [en]

    Patients, next of kin and nurses in surgical wards often raise existential questions in the encounter between life and death. Nurses' emotional knowing at this encounter is crucial. Consequently, this study's purpose was to analyse and describe nurses' emotional knowing to reveal (a) how this knowing is expressed in daily work and (b) what emotions, thoughts and actions this knowing includes. This study used combined ethnographic and hermeneutic methodologies. Data were collected using participant observations, informal conversations and interviews. We found that nurses' emotional knowing could be interpreted in relation to various rooms of emotions, thoughts and actions. Nurses' judgements formed these rooms. They strived to do things correctly in the normative room; created a safe, secure milieu for patients and next of kin in the safety–security room; and questioned their actions in the critical room. They created affinity for co-operation that benefitted encounters with patients in their affinity room. And they demonstrated sensitivity and compassion to patients and next of kin; sensitivity and compassion were particularly evident in the closeness room. In our main interpretation, we found that nurses' judgements in various rooms (emotional knowing) constitute an expression of practical wisdom (phronesis) in nursing practice.

  • 36.
    James, Inger
    et al.
    Örebro University, Department of Health Sciences.
    Andershed, Birgitta
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    A family's beliefs about cancer, dying, and death in the end of life2007In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 13, no 2, p. 226-252Article in journal (Refereed)
    Abstract [en]

    The purpose of this case study was to describe the beliefs over time of a Swedish family and individual family members about cancer and death and how these beliefs affected their daily lives. Data were collected over 10 months using interviews, conversations, and diary notations. The beliefs were aggregated into eight main beliefs and four themes: Cancer is a deadly threat/death is a liberator, death can be held at bay/death can be lived near, dying is done alone/dying should not be done alone, and life has an end/life is endless. These beliefs appear to oscillate between seemingly contrasting poles. Some beliefs were shared by all family members, whereas others were described by only one or more members of the family. The complexity of daily life in families experiencing life-shortening illness underscores the need of individualized nursing care with openness to difference and collaboration as guiding principles.

  • 37.
    James, Inger
    et al.
    Örebro University, School of Health and Medical Sciences.
    Andershed, Birgitta
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Ersta Sköndal Högskola .
    The encounter between informal and professional care at the end of life2009In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 19, no 2, p. 258-271Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.

  • 38.
    Källström Karlsson, Inga-Lill
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ehnfors, Margareta
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Department of Health Care Sciences, Ersta Skondahl University College, Stockholm, Sweden.
    Five nurses' experiences of hospice care in a long-term perspective2008In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 10, no 4, p. 224-232Article in journal (Refereed)
    Abstract [en]

    In this study, five nurses’ experiences of regularly having to face the incurable illness and death of dying patients were explored. Qualitative interviews were conducted on two occasions with an interval of 11 years. An interpretive method was used to discern the nurses’ thoughts, feelings, and attitudes over the years toward death and dying. The main finding was that working in hospice care and facing the dying and death of many patients had an impact both on daily work and private life. Narrations from the first occasion were conceptualized as the theme “Death as an Agent of Change.”  Eleven years later the presence of death took a less dominant place in the nurses’ lives and the theme became “Death as a Companion in Life“. In the long term nurses emphasized that their professional and personal growth was fostered by their relationship with the dying patients.

  • 39.
    Källström Karlsson, Inga-Lill
    et al.
    Örebro University, School of Health and Medical Sciences.
    Ehnfors, Margareta
    Örebro University, School of Health and Medical Sciences.
    Ternestedt, Britt-Marie
    Enheten för fors Department of Health Care Sciences, Ersta Skondahl, University College, Stockholm, Sweden.
    Patient characteristics of women and men cared for during the first 10 years at an inpatient hospice ward in Sweden2006In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 20, no 2, p. 113-121Article in journal (Refereed)
    Abstract [en]

    The hospice philosophy with focus on the patient's autonomy and the ideal of a good death are the overall objectives of palliative care. Often-raised questions, when discussing hospice, are for which of the incurable ill inpatient hospice is the most optimal care alternative together with who are making use of hospice. The aim of the present study was to describe patient characteristics such as age, marital status, diagnosis, referral source and length of stay (LoS) in relation to gender, during the first decade at an inpatient hospice ward (1992–2001). Data, obtained from medical register, were analysed by using descriptive statistics and the chi-square test. The number of patients was 666 women and 555 men, and most of them were elderly. In some respects significant differences were observed between women and men. More women than men were single, had cancer with relatively rapid trajectory and were referred from the oncology department. Men, more often than women, were diagnosed with cancers with a somewhat longer trajectory. Despite the longer trajectory, the LoS was shorter for men (median =13 days) than for women (median = 17 days). The most frequent referral source was hospital, though men, younger men in particular, were more often referred from home-based hospice care than women. During the last 3 years self-referrals were documented. Self-referrals can be seen as one distinct expression from a standpoint of one's own active choice compared with other referrals. Altogether, self-referrals were less frequent among women than men but in relation to age, self-referrals were more common among the youngest (<60 years) and the oldest women (>85 years) than men in the same age groups. Further studies illuminating a gender perspective can broaden the understanding of what these differences may imply for women and men.

  • 40.
    Källström Karlsson, Inga-Lill
    et al.
    Örebro University, School of Health and Medical Sciences.
    Sunvisson, Helena
    Örebro University, School of Health and Medical Sciences. Hälsoakademin.
    Ehnfors, Margareta
    Enheten för forskning om vård i livets slutskede, Ersta-Sköndal, Stockholm, Sverige.
    Ternestedt, Britt-Marie
    Enheten för forskning om vård i livets slutskede, Ersta, Stockholm, Sverige.
    Nurses’ perspectives on caring for hospice patients with weakening bodiesManuscript (preprint) (Other academic)
    Abstract [en]

    Aim. To deepen the understanding of how nurses experience their care of dying patients with weakening bodies.

    Background. A socio-cultural context that emphasizes healthy bodies might have consequences for attitudes toward sickness and weakness. Physical disease-based deterioration puts limits on opportunities to achieve a fit body. When dying patients’ bodies are deteriorating, they must rely on and receive body-care assistance. Few nursing studies explore nurses’ perceptions about caring for the body.

    Method. Data were collected over a 3-month period in 2004-2005. Qualitative, conversational-style interviews were done to gather personal reflections of 19 nurses in a Swedish hospice ward. The approach of interpretative description was used to analyze the interviews.

    Findings. A main theme – struggling to acknowledge and unveil the person within the weakening body – was synthesized from four subthemes, i.e., nurses: (1) striving to understand patients’ experiences of bodily losses; (2) encouraging patients to uphold bodily functions and daily habits; (3) acknowledging and balancing patients’ need of bodily control; and (4) providing tender body care.

    Conclusion. Ways in which nurses interpret and care for bodies of dying patients influence how dying patients perceive their embedded selves at life’s end. Nurses struggled to promote person-oriented care by being flexible and creative and by using various strategies for body care that was aligned with the individual patient’s progression toward death. Person-oriented care was sometimes challenged when patients could not express their preferences or when the body became very deformed.

  • 41.
    Sahlberg-Blom, Eva
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Nursing and Caring Sciences.
    Johansson, Jan-Erik
    "Am I going to die now?": Prognostication of survival time by members of the care team2001In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 42, no 3, p. 219-235Article in journal (Refereed)
    Abstract [en]

    To get a real chance to make autonomous decisions in the final phase of their life, people who are soon going to die have a right to be informed concerning available knowledge about their prognosis and condition. The aim of this study is to describe how different members of the care team make prognostications about patients survival time, and what motivates their prognostications. Doctors and registered nurses made prognostications to a greater extent, and were also somewhat more successful, than practical nurses and social workers. Different professions seem to differ in some respects concerning the criteria included in their motivations and the knowledge upon which they base their motivations.

  • 42.
    Sahlberg-Blom, Eva
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Nursing and Caring Sciences.
    Johansson, Jan-Erik
    Is good 'quality of life' possible at the end of life?: An explorative study of the experiences of a group of cancer patients in two different care cultures2001In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 10, no 4, p. 550-562Article in journal (Refereed)
    Abstract [en]

    The purpose of this paper was to explore how a group of gravely ill patients, cared for in different care cultures, assessed their quality of life during their last month of life.* The study material comprised quality of life assessments from 47 cancer patients, completed during their last month of life. Two quality of life questionnaires, the EORTC QLQ-C30 and a psychosocial well-being questionnaire, were used. The data were treated in accordance with instructions for the respective questionnaires, and the results are presented primarily as means, mostly at the group level. Assessments from patients in two different care cultures, care-orientated and cure-orientated, were compared.* The results show that despite having an assessed lower quality of life in many dimensions than people in general, several patients experienced happiness and satisfaction during their last month of life.* 'Cognitive functioning' and 'emotional functioning' were the dimensions that differed least from those of the general population, and 'physical functioning', 'role functioning' and 'global health status/quality of life' differed the most. 'Fatigue' showed the highest mean for the symptom scales/items.* There was a tendency for those cared for in the cure-orientated care culture to report more symptoms than those in the care-orientated care culture. An exception to this was 'pain', which was reported more often by those in the care-orientated care culture.* The implications of the results are discussed from different angles. The significance of knowledge concerning how patients experience their quality of life is also discussed with respect to the care and the planning of care for dying patients.

  • 43.
    Sahlberg-Blom, Eva
    et al.
    Örebro University, Department of Nursing and Caring Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Nursing and Caring Sciences.
    Johansson, Jan-Erik
    The last month of life: continuity, care site and place of death1998In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 12, no 4, p. 287-296Article in journal (Refereed)
    Abstract [en]

    A hospice ward was opened in 1991 at the Örebro MedicalCentre Hospital (ÖMCH) in Sweden. Shortly afterwards, aresearch project was started, which aimed to describe differentaspects of the final period of life of a group of cancer patients.This exploratory study is part of this project and aims to assesscontinuity in the site of care for a group of severely ill cancerpatients during the final stages of their lives, and their placeof death within different cultures of care.

    This prospective study involved 56 adults with cancer who hadbeen admitted to six specialized departments at ÖMCH. Demographicand diagnostic data, documentation of when the patients changedfrom one care form to another, as well as place of death wereobtained. The analysis of continuity in terms of care site involvedcare-oriented cultures (hospice ward, hospital-based home care,primary care-based home care and nursing home) and cure-orientedcultures (acute hospital wards).

    Considered as a group, the patients spent one-third of theirtime at home during their final month of life, with or withoutformal caregivers. For individual patients, however, there weregreat variations with regard to continuity of care site andcare form. A pattern was found for the type of cancer the patientshad and where they were during their final month. Ten patientsdied in their own homes, and of the 46 who died in an institution,approximately the same number died in a care-oriented cultureas in a cure-oriented culture.

  • 44. Seiger Cronfalk, Berit
    et al.
    Strang, Peter
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences.
    Inner power, physical strength and existential well-being in daily life: relatives' experiences of receiving soft tissue massage in palliative home care2009In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 18, no 15, p. 2225-2233Article in journal (Refereed)
    Abstract [en]

    Aim and objectives. This article explores relatives' experiences of receiving soft tissue massage as a support supplement while caring for a dying family member at home. Background. In palliative home care, relatives play an important role as carers to seriously ill and dying family members. To improve their quality of life, different support strategies are of importance. Complementary methods, such as soft tissue massage have become an appreciated supplement for these patients. However, only few studies focus on relatives experiences of receiving soft tissue massage as a supplemental support. Design. Qualitative design Method. Nineteen relatives received soft tissue massage (hand or foot) nine times (25 minutes) in their homes. Open-ended semi-structured tape-recorded interviews were conducted once per relative after the nine times of massage, using qualitative content analysis. Results. Soft tissue massage gave the relatives' feelings of 'being cared for', 'body vitality' and 'peace of mind'. For a while, they put worries of daily life aside as they just experienced 'being'. During massage, it became apparent that body and mind is constituted of an indestructible completeness. The overarching theme was 'inner power, physical strength and existential well-being in their daily lives'. Conclusion. All relatives experienced soft tissue massage positively, although they were under considerable stress. Soft tissue massage could be an option to comfort and support relatives in palliative home care. Relevance to clinical practice. In palliative nursing care, soft tissue massage could present a worthy supplement in supporting caring relatives.

  • 45.
    Ternestedt, Britt-Marie
    et al.
    Örebro University, Department of Health Sciences.
    Andershed, Birgitta
    Örebro University, Department of Health Sciences.
    Eriksson, Monika
    Johansson, Ingrid
    A good death - Development of a nursing model of care2002In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 4, no 3, p. 153-160Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe the ongoing process at a Swedish hospice to further develop a model for care planning, documentation, and evaluation of the quality of death. The model was adapted to a nursing context by means of concept derivation. The core of the model is the patient as a person, in which that person’s experiences and need for control in his or her life are acknowledged. Six key words have been used as guidelines in this process: symptom control, self-determination, social relations, self-image, synthesis, and surrender. In a retrospective analysis of patient deaths it was found that of 35 patients, 15 had a very good death, 17 a good death, and 3 a bad death. Use of the 6 S key words provided the staff with continual opportunities for reflection, which was described as increasing their awareness concerning the needs of individual patients and concerning individualized nursing care.

  • 46. Tishelman, Carol
    et al.
    Bergenmar, Marie
    Bernhardson, Britt-Marie
    Blomberg, Karin
    Örebro University, Department of Health Sciences.
    Börjeson, Sussanne
    Foderus, Helena
    Leveälahti, Helena
    Sahlberg-Blom, Eva
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Using undergraduate nursing students as mediators in a knowledge transfer programme for care for patients with advanced cancer2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 3, p. 253-260Article in journal (Refereed)
    Abstract [en]

    Nursing today faces numerous challenges. Societal changes lead to reorganization of health care, changing workloads with sicker patients in hospital and home care, and limited economic resources. The increasing and changing nature of knowledge needed for expert care provision challenges nurses to continually update their competencies. These are issues demanding proactive and dynamic changes in the way nurses conceive their mandates and practice. The aim of the action-research project presented here was to foster improved quality of care for patients with advanced cancer through collaborative endeavours integrating cancer nursing clinical practice, research and education in a knowledge exchange programme. The programme was based on input about caregiving needs from multi-professional staff caring for patients with advanced cancer in a variety of healthcare settings. Undergraduate baccalaureate nursing students were then engaged in literature studies to help address these needs. Results of the studies were communicated back to the involved clinicians in a variety of ways. In this paper, we discuss what we have experienced as opportunities and obstacles in conducting the project, based on our reflections and external evaluations. This is linked to a broader discussion of ways of integrating cancer nursing research, education and practice.

  • 47.
    Tishelman, Carol
    et al.
    Karolinska Institutet.
    Bergenmar, Mia
    Karolinska Institutet.
    Berhardson, Britt-Marie
    Karolinska Institutet.
    Eva, Johansson
    Karolinska Institutet.
    Leveälahti, Helena
    Karolinska Institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal högskola.
    Blomberg, Karin
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Helena, Foderus
    Örebro läns landsting.
    Lise-Lotte, Franklin
    Sahlberg Blom, Eva
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Susanne, Börjesson
    Linköpings universitet.
    Förbättrad kvalitet för patienter med avancerad cancer genom ett undervisnings- och utbytesprogram. Cancerfondens utvecklingsprojekt 2000-2002. Slutrapport.2007Report (Other (popular science, discussion, etc.))
  • 48. Tishelman, Carol
    et al.
    Bernhardson, Britt-Marie
    Blomberg, Karin
    Örebro University, Department of Health Sciences.
    Börjeson, Sussanne
    Franklin, Liselotte
    Johansson, Eva
    Leveälahti, Helena
    Sahlberg-Blom, Eva
    Örebro University, Department of Health Sciences.
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Complexity in caring for patients with advanced cancer2004In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 45, no 4, p. 420-429Article in journal (Refereed)
    Abstract [en]

    Background. The gap between nursing research and practice is readily acknowledged in literature, with a variety of strategies suggested for reducing this gap. It is necessary not only to address problems of research implementation in practice, but also to find strategies that strengthen the influence of practitioners on research agendas through more collaborative relationships in order to have an impact on care of patients. A multi-centre research project was therefore initiated by two universities and three health care facilities, aiming to improve quality of care for patients with advanced cancer through a knowledge-exchange programme between nurse researchers, practitioners and students.

    Aim. The aim of this article is to explore how clinical staff reason about care provision for patients with advanced cancer, through analysis of 20 focus group discussions conducted with staff in three different health care facilities in two Swedish cities. An initial analysis based on grounded theory was complemented with consideration of the interactive process in the focus group discussions, and carried out by a team consisting of senior nurse researchers, clinical experts and nursing instructors.

    Findings. The findings of the focus group discussions emphasize the complexity of caregiving for patients with advanced cancer. The tension between caregiving ideals and limits imposed by the realities of caregiving in today's health system were striking. Practitioners discussed the organization of care, different constellations of relationships between patients, family members and professionals, and theoretical and experiential knowledge as equally important aspects in dealing with all concrete situations in daily practice. The importance of reflective practice, use of self and ethical reasoning also permeated the focus group discussions.

    Conclusions. These findings highlight an integrated need both to influence organizational structures and working relationships, along with increasing knowledge, if sustainable change is to be effected.

  • 49. Öhlén, Joakim
    et al.
    Andershed, Birgitta
    Örebro University, Department of Health Sciences.
    Berg, Christina
    Frid, Ingvar
    Palm, Carl-Axel
    Ternestedt, Britt-Marie
    Örebro University, Department of Health Sciences.
    Segesten, Kerstin
    Relatives in end-of-life care – part 2: a theory for enabling safety2007In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 16, no 2, p. 382-390Article in journal (Refereed)
    Abstract [en]

    AIM: To develop a goal-oriented praxis theory for enabling safety for relatives when an adult or older patient is close to end-of-life.

    BACKGROUND: This is the second part of a project focusing on the situation and needs of relatives in end-of-life care. Our interpretation of the existing corpus of knowledge pertaining to the needs of close relatives in this situation showed the significance of relatives' need for safety.

    METHOD: The theory was developed step-by-step, through triangulation of critical review of empirical research in the field, our own clinical experiences from end-of-life care, renewed literature searches and theoretical reasoning.

    THEORY: The foundation for the theory is taken from the ethical intention of the philosopher Paul Ricoeur. From this, the theory focuses on relatives in the context of end-of-life care with the goal of enabling safety. This is proposed by four aphorisms functioning as safety enablers and these are directed towards the professional's approach and attitude, the relative's concern for the patient, the specific situation for the relative and the patient's end-of-life period as a period in the life of the relative.

    RELEVANCE TO CLINICAL PRACTICE: Implications for end-of-life practice are considered and include aspects for promotion of just institutions in end-of-life care, the significance of negotiated partnership in end-of-life care, enabling safety for relatives living in existential and practical uncertainty in connection with end-of-life care and diversity of relatives' preferences as they live through this particular period.

  • 50.
    Österlind, Jane
    et al.
    Örebro University, School of Health and Medical Sciences.
    Hansebo, Görel
    Andersson, Janicke
    Ternestedt, Britt-Marie
    Örebro University, School of Health and Medical Sciences.
    Hellström, Ingrid
    A discourse of silence: professional carers reasoning about death and dying in nursing homes2011In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 31, no 4, p. 529-544Article in journal (Refereed)
    Abstract [en]

    Nursing homes are a setting in which death and dying is common. How death and dying is articulated and the actions that take place in a nursing home constitute a discourse that guides the staff in their work. The aim of this study was to explore the discourse of death and dying in nursing homes from the perspective and understanding of the staff. The study draws on Foucault’s discourse analysis. Data are from five focus-group discussions held with 28 staff of four different nursing homes in Sweden. The findings show that the discourse had three characteristics : (a) dying was silent and silenced, (b) emotions were pushed into the background, and (c) attentiveness to death arose after the moment of the elderly person’s death. The structure of the discourse was characterised by a movement between two positions, avoiding and confronting death, the main focus being on avoidance. The articulation and practices of silence highlight a need to regard dying as a process that requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and support for the staff in their work. The study demonstrates that nursing-home staff need more knowledge and support to enable them to feel that they do a good job.

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