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  • 1. Algers, Bo
    et al.
    Gunnarsson, StefanNordenfelt, LennartErsta Sköndal University College, Enheten för forskning i palliativ vård.
    Djuren är väl också människor: en antologi om hälsa och välbefinnande i djurens och människornas värld2008Collection (editor) (Other academic)
  • 2.
    Bergdahl, Elisabeth
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Developing nurses’ way to reflect over caring relationships through clinical supervision with a structured reflection; an action research approach2011In: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 18, no 2, p. 111-122Article in journal (Refereed)
  • 3. Blomberg, Karin
    et al.
    Forss, Anette
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Tishelman, Carol
    From 'silent' to 'heard': professional mediation, manipulation and women's experiences of their body after an abnormal Pap smear.2009In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 68, no 3, p. 479-86Article 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.

  • 4. Blomberg, Karin
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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. 561-9Article 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 how 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 al.'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.

  • 5.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Me-ness and we-ness in a modified everyday life close to death at home2011Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person’s need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers’ self-image were connected to intimacy, decreasing personal space and experiences such as “forbidden thoughts”. The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

  • 6.
    Carlander (Goliath), Ida
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Bergdahl, Elisabeth
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Dwyer, Lise-Lotte
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Värdighet och döende2009Report (Other academic)
  • 7.
    Carlander (Goliath), Ida
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Hellström, Ingrid
    Linköpings universitet, campus Norrköping.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    The modified self: family caregivers' experiences of caring for a dying family member at home2011In: 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 on 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 homecare 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: The present study argues for supporting family caregivers to maximize 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 the present study emphasizes 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.

  • 8.
    Carlander (Goliath), Ida
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Hälsoakademin, Örebro universitet.
    Hellström, Ingrid
    Linköpings universitet, .
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    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 everyone in the family individually had to deal with the impending death, regardless of whether he or she was the person with the life-threatening illness or not. This was linked to ways of promoting the own self-image, of “me-ness.” This pattern was present at the same time as the pattern of “being us,” 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.

  • 9.
    Carlander (Goliath), Ida
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Hälsoakademin, Örebro universitet.
    Hellström, Ingrid
    Linköpings universitet, .
    Sandberg, Jonas
    Ersta Sköndal University College, Department of Health Care Sciences.
    Four aspects of self-image close to death at home2011In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, Vol. 6, no 2, p. 5931-Article 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 twelve 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. 

  • 10.
    Dwyer, Lise-Lotte
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Nursing home residents’ views on dying and death: nursing home employee’s perspective2010In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 6, no 4, p. 251-260Article in journal (Refereed)
  • 11.
    Dwyer, Lise-Lotte
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hellström, Ingrid
    Ett värdigt möte i vardagen2010In: Äldres hälsa och ohälsa: en introduktion till geriatrisk omvårdnad / [ed] Anna Ekwall, Lund: Studentlitteratur , 2010, 1, p. 29-40Chapter in book (Other academic)
  • 12. Ek, Kristina
    et al.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Struggling to retain the living space: Patients´ stories about their lives as living alone with severe chronic obstructive pulmonary disease2011In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 67, no 7, p. 1480-1490Article in journal (Refereed)
  • 13. Ek, Kristina
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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. 470-8Article in journal (Refereed)
    Abstract [en]

    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.

  • 14.
    Ekman, Inger
    et al.
    Göteborgs universitet.
    Swedberg, Karl
    Göteborgs universitet.
    Taft, Charles
    Göteborgs universitet.
    Lindseth, Anders
    Göteborgs universitet; Bodø University College.
    Norberg, Astrid
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Göteborgs universitet; Umeå universitet.
    Brink, Eva
    Göteborgs universitet.
    Carlsson, Jane
    Göteborgs universitet.
    Dahlin-Ivanoff, Synneve
    Göteborgs universitet.
    Johansson, Inga-Lill
    Göteborgs universitet.
    Kjellgren, Karin
    Linköpings universitet.
    Lidén, Eva
    Göteborgs universitet.
    Öhlén, Joakim
    Institutionen för vårdvetenskap och hälsa, Sahlgrenska akademin, Göteborgs universitet.
    Olsson, Lars-Eric
    Göteborgs universitet.
    Rosén, Henrik
    Göteborgs universitet.
    Rydmark, Martin
    Göteborgs universitet.
    Stibrant Sunnerhagen, Katharina
    Göteborgs universitet.
    Person-centered care: Ready for prime time2011In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 10, no 4, p. 248-251Article in journal (Refereed)
    Abstract [en]

    Long-term diseases are today the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. Person-centered care (PCC) has been shown to advance concordance between care provider and patient on treatment plans, improve health outcomes and increase patient satisfaction. Yet, despite these and other documented benefits, there are a variety of significant challenges to putting PCC into clinical practice. Although care providers today broadly acknowledge PCC to be an important part of care, in our experience we must establish routines that initiate, integrate, and safeguard PCC in daily clinical practice to ensure that PCC is systematically and consistently practiced, i.e. not just when we feel we have time for it. In this paper, we propose a few simple routines to facilitate and safeguard the transition to PCC. We believe that if conscientiously and systematically applied, they will help to make PCC the focus and mainstay of care in long-term illness.

  • 15.
    Ekstedt, Mirjam
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Åkerstedt, T
    Planerad vila förebygger överträning2010In: Svensk idrottsmedicin, ISSN 1103-765, no 1, p. 14-17Article in journal (Other (popular science, discussion, etc.))
  • 16. Ekwall, Ewa
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sorbe, Bengt
    Recurrence of ovarian cancer-living in limbo2007In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 4, p. 270-7Article in journal (Refereed)
    Abstract [en]

    Few studies have shed light on women's life situation after being informed of having recurrent ovarian cancer. The present study aimed to elucidate women's experiences of living with this knowledge. Interviews were conducted with 12 women who were undergoing or had just completed chemotherapy, 5 to 10 months after learning of the recurrence. Data were collected and analyzed based on a life world perspective using a descriptive phenomenological method. The women's experiences are described via 3 key constituents: being denied one's future while simultaneously hoping to be able to delay the cancer's advancement, feeling alienated from both oneself and one's surroundings, and being responsible. The key constituents were integrated into the structure "living in limbo." The women lived on the threshold to the unknown. They were preparing themselves both for a continued life and for death. "Living in limbo" can be described as a phase of a health-illness transition characterized by loneliness. The vulnerable position and existential struggle of these women should be focused upon in nursing. The sensitive dialogue is essential in these cases.

  • 17.
    Ewertzon, Mats
    et al.
    Örebro universitet. ; Högskolan Dalarna.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Svensson, E
    Lützén, Kim
    Family member’s expectations of the psychiatric health-care professionals´ approach towards them2011In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 18, no 2, p. 146-157Article in journal (Refereed)
  • 18.
    Ewertzon, Mats
    et al.
    Örebro universitet. ; Högskolan Dalarna.
    Lützén, Kim
    Högskolan Dalarna.
    Svensson, Elisabeth
    Örebro universitet.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Family members´ involvement in psychiatric care: experiences of the health-care professionals´ approach and feeling of alienation.2010In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 17, p. 422-432-Article in journal (Refereed)
  • 19.
    Franklin, Lise-Lotte
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Samtal om värdighet2007In: Hemmets vårdetik: om vård av äldre i livets slutskede / [ed] Gunilla Silfverberg, Lund: Studentlitteratur , 2007, 1:1, p. 135-146Chapter in book (Other academic)
  • 20.
    Franklin, Lise-Lotte
    et al.
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Nordenfelt, Lennart
    Linköpings universitet.
    Views on dignity of elderly nursing home residents2006In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 13, no 2, p. 130-46Article in journal (Refereed)
    Abstract [en]

    Discussion about a dignified death has almost exclusively been applied to palliative care and people dying of cancer. As populations are getting older in the western world and living with chronic illnesses affecting their everyday lives, it is relevant to broaden the definition of palliative care to include other groups of people. The aim of the study was to explore the views on dignity at the end of life of 12 elderly people living in two nursing homes in Sweden. A hermeneutic approach was used to interpret the material, which was gathered during semi-structured interviews. A total of 39 interviews were transcribed. The analysis revealed three themes: (1) the unrecognizable body; (2) fragility and dependency; and (3) inner strength and a sense of coherence.

  • 21.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Hellström, Ingrid
    Linköpings universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    How people with Alzheimer's disease express their sense of self: Analysis using Rom Harré's theory of selfhood2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 6, p. 713-733Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to use Harré’s social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer’s disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.

  • 22.
    Hellström, Ingrid
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Närstående i hemsjukvården2010In: Hemsjukvård / [ed] Eva Drevenhorn, Lund: Studentlitteratur , 2010, 1:1, p. 75-90Chapter in book (Other academic)
  • 23.
    Hellström, Ingrid
    et al.
    Linköpings universitet.
    Nolan, Mike
    University of Sheffield, Sheffield, UK.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Lundh, Ulla
    Linköpings universitet, Institutionen för samhälls- och välfärdsstudier ; Linköpings universitet, Hälsouniversitetet.
    Ethical and methodological issues in interviewing persons with dementia2007In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 14, no 5, p. 608-619Article in journal (Refereed)
    Abstract [en]

    People with dementia have previously not been active participantsin research, with ethical difficulties often being cited asthe reason for this. A wider inclusion of people with dementiain research raises several ethical and methodological challenges.This article adds to the emerging debate by reflecting on theethical and methodological issues raised during an interviewstudy involving people with dementia and their spouses. Thestudy sought to explore the impact of living with dementia.We argue that there is support for the inclusion of people withdementia in research and that the benefits of participationusually far outweigh the risks, particularly when a `safe context'has been created. The role of gatekeepers as potentially responsiblefor excluding people with dementia needs further consideration,with particular reference to the appropriateness of viewingconsent as a primarily cognitive, universalistic and exclusionaryevent as opposed to a more particularistic, inclusive and contextrelevant process.

  • 24.
    Henriksson (Alvariza), Anette
    et al.
    Örebro universitet.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Gjövik University, Norway.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Linnéuniversitetet.
    Årestedt, Kristoffer
    Linnéuniversitetet, Linköpings universitet.
    Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 7, p. 930-938Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving.

    AIM: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness.

    DESIGN: Correlational.

    SETTING/PARTICIPANTS: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability.

    RESULTS: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9.

    CONCLUSIONS: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.

  • 25.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Meeting the needs of family members of persons with life threatening illness: a support group programme during ongoing palliative care.2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 263-271Article in journal (Refereed)
  • 26.
    Håkanson, Cecilia
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Ersta Sköndal University College, Department of Health Care Sciences.
    Learning to live with irritable bowel syndrome: Experiences of a group-based patient education program2010Article in journal (Refereed)
  • 27.
    Håkanson, Cecilia
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. Ersta Sköndal University College, Department of Health Care Sciences.
    Living with irritable bowel syndrome: A patient perspective on everyday life, health care encounters and patient education2010Doctoral thesis, comprehensive summary (Other academic)
  • 28.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Nyhlin, Henry
    Karolinska universitetssjukhuset Huddinge.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Learning to live with irritable bowel syndrome.: The influence of a group-based patient education programme on peoples’ ability to manage illness in everyday life.2011In: 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.

  • 29.
    Håkanson, Cecilia
    et al.
    Örebro universitet & Ersta sjukhus.
    Sahlberg-Blom, Eva
    Ersta Sköndal University College, Department of palliative care research. Örebro universitet.
    Nyhlin, Henry
    Ersta sjukhus.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård. Örebro universitet.
    Struggling with an unfamiliar and unreliable body: the experience of irritable bowel syndrome2009In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, 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.

  • 30.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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. 1116-27Article 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.

  • 31.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Nyhlin, Henry
    Karolinska Institutet.
    Learning about oneself through others: experiences of a groupbased patient education programme about irritable bowel syndrome2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 4, p. 738-46Article 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 awhole, 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 andobserving 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 knowledgebased decisions about what strategies to use in overcoming illness-related troubles.

  • 32. Jackson, Karin
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Magnuson, Anders
    Schollin, Jens
    Parental stress and toddler behaviour at age 18 months after pre-term birth.2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 2, p. 227-32Article 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.

  • 33. Jackson, Karin
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Magnuson, Anders
    Schollin, Jens
    Quality of care of the preterm infant--the parent and nurse perspective.2006In: 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.

  • 34.
    James, Inger
    et al.
    Örebro universitet.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Gustavsson, Bengt
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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, p. 53-67Article in journal (Refereed)
  • 35. James, Inger
    et al.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Gustavsson, Bengt
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Knowledge Constructions in Nursing Practice: Understanding and Integrating Different Forms of Knowledge2010In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 20, no 11, p. 1500-1518Article in journal (Refereed)
  • 36. James, Inger
    et al.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    A family's beliefs about cancer, dying, and death in the end of life.2007In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 13, no 2, p. 226-52Article 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.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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. 258-71Article 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.
    Johansson, Anita
    et al.
    Örebro universitet.
    Anderszen-Carlsson, Agneta
    Åhlin, Arne
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Being a mother to an adult son or daughter with long-term mental illness – to live a life on strain2010In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 31, p. 692-699Article in journal (Refereed)
  • 39.
    Johansson, Anita
    et al.
    University of O¨ rebro, School of Health and Medical Sciences, Örebro, Sweden and Skaraborg Hospital, Division of Psychiatry, Skövde, Sweden.
    Anderzen-Carlsson, Agneta
    University of Örebro, School of Health and Medical Sciences, Örebro, Sweden and Centre for Health Care Sciences, Örebro, Sweden.
    Åhlin, Arne
    Margretelunds Ungdomshem, National Board of Institutional Care, Lidköping, Sweden.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård. University College, Department of Nursing, Gjøvik, Norway.
    Fathers’ everyday experiences of having an adult child who suffers from long-term mental illness2012In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 33, no 2, p. 109-117Article in journal (Refereed)
    Abstract [en]

    The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong fac¸ade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child’s life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents’ abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.

  • 40.
    Johansson, Gunilla
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Sandahl, Christer
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Authentic and congruent leadership providing excellent work environment in palliative care.2011In: International journal of health care quality assurance incorporating leadership in helath services, ISSN 1366-0756, E-ISSN 2051-3135, Vol. 24, no 2, p. 135-149Article in journal (Refereed)
  • 41. Kallenberg, K
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Självbestämmande i dödens närhet2005In: Palliativ medicin / [ed] Barbro Beck-Friis och Peter Strang, Stockholm: Liber , 2005, 3, p. 81-89Chapter in book (Other academic)
  • 42.
    Karlsson, Christina
    et al.
    Örebro universitet.
    Tisell, Anna
    Örebro universitet.
    Engström, Åsa
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Family members’ satisfaction of critical care in a intensive care unit2011In: Nursing in Critical Care, ISSN 1362-1017, E-ISSN 1478-5153, Vol. 16, no 1, p. 11-18Article in journal (Refereed)
  • 43. Karlsson, ILK
    et al.
    Ehnfors, M
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    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 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.

  • 44. Karlsson, Inga Lill Källström
    et al.
    Ehnfors, Margareta
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Patient characteristics of women and men cared for during the first 10 years at an inpatient hospice ward in Sweden.2006In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 20, no 2, p. 113-21Article 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.

  • 45.
    Norberg, Astrid
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Santamäki Fischer, Regina
    Lundman, Berit
    Förord2012In: Det goda åldrandet / [ed] Astrid Norberg, Berit Lundman, Regina Santamäki Fischer, Lund: Studentlitteratur, 2012, 1, p. 13-15Chapter in book (Other academic)
  • 46.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Action, ability, and health: essays in the philosophy of action and welfare2000Book (Other academic)
  • 47.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Animal and human health and welfare: a comparative philosophical analysis2006Book (Other academic)
  • 48.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Begreppet arbetsförmåga2009In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 86, no 3, p. 220-228Article in journal (Refereed)
  • 49.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Begreppet värdighet2010In: Värdighet i vården av äldre personer / [ed] Lennart Nordenfelt, Lund: Studentlitteratur AB , 2010, 1, p. 63-103Chapter in book (Other academic)
  • 50.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Dignity as an object of empirical study: experiences from two research programmes2009In: Dignity in care for older people / [ed] Lennart Nordenfelt, Chichester: Wiley-Blackwell , 2009, p. 190-206Chapter in book (Other academic)
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