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  • 1. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    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, p. 151-159Article in journal (Refereed)
  • 2.
    Andershed, Birgitta
    et al.
    Ersta Sköndal University College, Department of palliative care research.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of palliative care research.
    Development of a theoretical framework of understanding about relatives´ involvement in palliative care.2001In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 34, no 4, p. 554-562Article in journal (Refereed)
  • 3. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    Involvement of relatives in the care of the dying in different care cultures. Development of a theoretical understanding.1999In: Nursing Science Quarterly, ISSN 0894-3184, E-ISSN 1552-7409, Vol. 12, no 1, p. 45-51Article in journal (Refereed)
  • 4. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    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. 106-116Article in journal (Refereed)
  • 5. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    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. 44-52Article in journal (Refereed)
  • 6. Andershed, Birgitta
    et al.
    Ternestedt, Britt-Marie
    The illness trajectory - for patients with cancer in two different cultures of care.1998In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, Vol. 37, no 4, p. 251-272Article in journal (Refereed)
  • 7.
    Andershed, Birgitta
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-MarieErsta Sköndal University College, Palliative Research Centre, PRC.Håkanson, CeciliaErsta Sköndal University College, Palliative Research Centre, PRC.
    Palliativ vård: begrepp & perspektiv i teori och praktik2013Collection (editor) (Other academic)
  • 8.
    Benzein, Eva
    et al.
    Linnéuniversitetet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sahlberg Blom, Eva
    Örebro Universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Andershed, Birgitta
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ett vårdvetenskapligt perspektiv på forskning i livets slutskede: erfarenheter från Sverige2009In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, no 4, p. 19-22Article in journal (Other academic)
    Abstract [sv]

    Denna artikel belyser kortfattat utvecklingen av vårdvetenskaplig forskning om vård i livets slutskede i Sverige från 1970-talet fram till idag. Den visar en ökning av forskningen när det gäller den döende personens, närståendes och personalens perspektiv. Vidare beskrivs exempel på forskning som bedrivs vid Enheten för forskning om vård i livets slutskede vid Ersta Sköndal högskola; en forskningsmiljö som kunnat formaliseras till innehåll och struktur med hjälp av en donation. Exempel ges på projekt med beskrivande och intervenerande designer. Områden som behöver studeras ytterligare är individers/familjens situation i samband med döende och död, döende personer med demenssjukdom och döende och död ur ett mångkulturellt perspektiv och ur ett genusperspektiv. Större mångvetenskapliga forskningsprojekt behövs. En stor utmaning är också att överbrygga gapet mellan forskning och klinisk verksamhet.

  • 9.
    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)
  • 10.
    Bergdahl, Elisabeth
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linköpings universitet.
    Benzein, Eva
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linné universitetet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Elmberger, Eva
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Andershed, Birgitta
    Ersta Sköndal University College, Palliative Research Centre, PRC. Gjövik högskola.
    Co-creating possibilities for patients in palliative care to reach vital goals: A multiple case study of home-care nursing encounters2013In: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 20, no 4, p. 341-351Article in journal (Refereed)
    Abstract [en]

    The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.

  • 11. Blomberg, K
    et al.
    Tishelman, Carol
    Karolinska Institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Törnberg, S
    Levál, A
    Widmark, C
    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. 112-20Article in journal (Refereed)
  • 12. Blomberg, K
    et al.
    Widmark, C
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Törnberg, S
    Tishelman, Carol
    Karolinska Institutet.
    Between youth and adulthood: Focus-group discussion with 30 year-old women abot cervical cancer and its prevention in urban Sweden2011In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 34, no 3, p. 11-20Article in journal (Refereed)
  • 13. 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.

  • 14. 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.

  • 15.
    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.

  • 16.
    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.

  • 17.
    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. 

  • 18.
    Carlander (Goliath), Ida
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Hellström, Ingrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Constructing family identity close to death2013In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 3, no 5, p. 379-388Article in journal (Refereed)
    Abstract [en]

    Daily life close to death involves physical, psychological, and social strain, exposing patients and their family members to major transitions affecting relational patterns and identity. For the individual family member, this often means sharing life with a changing person in a changing relationship, disrupting both individual identity and family identity. Our aim was to deepen the understanding of individual experiences that are important in constructing family identity close to death at home. We performed a secondary analysis of qualitative data collected through 40 interviews with persons with life-threatening illness and the family members who shared everyday life with them. The analysis resulted in interpretive descriptions which provided three patterns important for creating family identity, which we here call “we-ness” close to death. The patterns were: being an existential person, being an extension of the other, and being together in existential loneliness. Together, these three patterns seemed to play a part in the construction of family identity; we-ness, close to death. One important finding was the tension between the search for togetherness in “we-ness” while dealing with an existential loneliness, which seemed to capture an essential aspect of being a family of which one member is dying.

  • 19.
    Dwyer, Lise-Lotte
    et al.
    Ersta Sköndal University College, Department of palliative care research. Örebro universitet.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Department of palliative care research.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of palliative care research.
    Dignity as experienced by nursing home staff2009In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 4, no 3, p. 185-193Article in journal (Refereed)
  • 20.
    Dwyer, Lise-Lotte
    et al.
    Ersta Sköndal University College, Department of palliative care research.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of palliative care research.
    Nordenfelt, Lennart
    Ersta Sköndal University College, Department of palliative care research.
    Nursing home staff's reasoning about death and dyingManuscript (preprint) (Other academic)
  • 21.
    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)
  • 22.
    Dwyer, Lise-Lotte
    et al.
    Ersta Sköndal University College, Department of palliative care research. Ersta Sköndal University College, Department of Health Care Sciences. Örebro universitet.
    Nordenfelt, Lennart
    Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of palliative care research.
    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.

  • 23. Ek, K
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Andershed, Birgitta
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sahlberg-Blom, Eva
    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)
  • 24. 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)
  • 25.
    Ek, Kristina
    et al.
    Högskolan i Skövde.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Nursing, Gjøvik University College, Gjøvik, Norway.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    "The unpredictable death"-The last year of life for patients with advanced COPD: Relatives' stories.2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 5Article 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.

  • 26. 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.

  • 27.
    Ekwall, Eva
    et al.
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet, Stiftelsen Stockholms sjukhem.
    Sorbe, Bengt
    Örebro universitet.
    Hällgren Graneheim, Ulla
    Umeå universitet.
    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.

  • 28.
    Ekwall, Eva
    et al.
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Sorbe, Bengt
    Örebro universitet.
    Sunvisson, Helena
    Örebro universitet.
    Lived experiences of women with recurring ovarian cancer.2014In: 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.

  • 29. Ekwall, Ewa
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences.
    Sorbe, Bengt
    Important aspects of health care for women with gynecologic cancer2003In: Oncology nursing forum, ISSN 1538-0688, Vol. 30, no 2, p. 313-319Article in journal (Refereed)
    Abstract [en]

    PURPOSE/OBJECTIVES: To describe what women diagnosed with primary gynecologic cancer reported to be important during their interaction with the healthcare system.

    DESIGN: Qualitative.

    SETTING: A specialized gynecologic cancer care unit in central Sweden.

    SAMPLE: 14 women diagnosed with primary gynecologic cancer were recruited. The women had been referred to the specialized care unit for radiation or cytostatic therapy.

    METHODS: Tape-recorded interviews were transcribed, coded, categorized, and analyzed.

    MAIN RESEARCH VARIABLES: Primary diagnosed women with cancer and their experience with quality of care during diagnosis and treatment.

    FINDINGS: Three partly overlapping categories (i.e., optimal care, good communication, and self-image and sexuality) were found to be of central importance in quality of health care. Participants stated that health care should be based on their own perceptions of the need for information and dialogue and how the disease and treatment would affect their health, self-image, and sexuality. Everyday conversations also were very important.

    CONCLUSIONS: Central importance in health care for the women included both rational and human aspects. The primary need of participants was to achieve a rapid cure, which necessitated health care that was available, competent, and coordinated.

    IMPLICATIONS FOR NURSING: Women with gynecologic cancer should be given individualized information and care to satisfy their individual needs and reinforce their self-image. Nurses have an important role in strengthening women's feelings of hope and supporting them in maintaining as positive a self-image as possible. Information and everyday conversation are of great significance. Sexuality should be an integral part of holistic care; to this end, inclusion of each woman's sexual partner may be helpful when discussions concerning sexuality occur.

  • 30. 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.

  • 31.
    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.

  • 32.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Hellström, Ingrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linköpings universitet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Expressed Sense of Self by People With Alzheimer’s Disease in a Support Group Interpreted in Terms of Agency and Communion2016In: Journal of Applied Gerontology, ISSN 0733-4648, Vol. 35, no 4, p. 421-443Article in journal (Refereed)
    Abstract [en]

    The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer’s disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré’s social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants’ expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

  • 33.
    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.

  • 34.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Hellström, Ingrid
    Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Being a research participant with Alzheimer’s disease: Expressions of sense of selfArticle in journal (Refereed)
  • 35.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Hellström, Ingrid
    Ersta Sköndal University College, Department of Health Care Sciences. Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska instituet.
    Norberg, Astrid
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Sense of Self in Alzheimer’s Research Participants2018In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 27, no 2, p. 191-212Article in journal (Refereed)
    Abstract [en]

    The sense of self is vulnerable in people with Alzheimer’s disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

  • 36.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Hellström, Ingrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linköpings universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet.
    Hansebo, Görel
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska Institutet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå universitet.
    Social positioning by people with Alzheimer's disease in a support group2014In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 28, p. 11-21Article in journal (Refereed)
  • 37.
    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)
  • 38.
    Henriksson (Alvariza), Anette
    et al.
    Örebro universitet.
    Årestedt, Kristofer
    Linköping universitet, Linne universitet.
    Benzein, Eva
    Ersta Sköndal University College, Palliative Research Centre, PRC. Linnéuniversitetet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet, Stockholms sjukhem.
    Andershed, Birgitta
    Ersta Sköndal University College, Palliative Research Centre, PRC. Gjøvik University College, 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.

  • 39.
    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.

  • 40.
    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.

  • 41.
    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.

  • 42.
    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.

  • 43.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Oncology/Pathology, Karolinska Institutet, Stockholm, Sweden, Stord Haugesund University College, Norway.
    Henrikssen, Eva
    Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden, FOUnu, Stockholm County Council, Stockholm, Sweden.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Nursing, Umeå University, Umeå, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Neurobiology, Care science and Society, Karolinska Institutet, Stockholm, Sweden, Stockholms Sjukhem foundation, Research, Development and Education Unit, Stockholm, Sweden.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC. Department of Nursing, School of Health Sciences, Jönköping University, Jönköping, Sweden.
    First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, p. 71-78Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care.

    Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviewswere conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes.

    The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  • 44.
    Håkansson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Seiger Cronfalk, Berit
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Henriksen, Eva
    Karolinska institutet.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Sandberg, Jonas
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    First-line managers’ views on leadership and palliative care in Swedish nursing homes2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 8, p. 71-78Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

  • 45.
    Ivarsson, Ann-Britt
    et al.
    Uppsala universitet.
    Söderback, Ingrid
    Uppsala universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences.
    The meaning and form of occupational therapy as experienced by women with psychoses: A phenomenological study2002In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 16, no 1, p. 103-110Article in journal (Refereed)
    Abstract [en]

    The meaning and form of occupational therapy as experienced by women with psychoses: a phenomenological study The aim of this study was to illuminate the experiences of occupational therapy interventions in individuals with psychoses. Repeated tape-recorded narrative interviews were conducted with six women participating in occupational therapy immediately after an intervention. The subsequent analyses followed a phenomenological approach. Key constituents integrated in two structures, are the main findings. The meaning of occupational therapy as expressed in the key constituents relief, self-knowledge, belief in the future, capability, resistance and satisfaction formed one structure. The form of occupational therapy as expressed in the key constituents time, environment, guidance, voluntariness and collaboration represented the other structure. These findings confirm and give empirical support to beliefs and assumptions expressed in occupational therapy literature. The results form a conceptual base for developing an evaluative assessment instrument for individuals with psychoses participating in occupational therapy.

  • 46. 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.

  • 47. 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.

  • 48. Jackson, Karin
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences.
    Schollin, Jens
    From alienation to familiarity: experiences of mothers and fathers of preterm infants.2003In: 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.

  • 49.
    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)
  • 50. 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)
12 1 - 50 of 97
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