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  • 1. Eggers, Thomas
    et al.
    Norberg, Astrid
    Ersta Sköndal University College, Department of palliative care research. Ersta Sköndal University College, Department of Health Care Sciences.
    Ekman, Sirkka-Liisa
    Counteracting fragmentation in the care of people with moderate and severe dementia.2005In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 14, no 4, p. 343-69Article in journal (Refereed)
    Abstract [en]

    Symptoms such as amnesia, agnosia, apraxia, and aphasia may lead to a fragmented experience and actions among people with moderate and severe dementia. The aim of this study was to explore the interactions where fragmentation occurred and how caregivers counteract fragmentation. The observation notes from participant observations were analyzed using interpretive content analysis. Fragmentation was noted if the patients showed that they did not recognize what was going on, the people involved, the things used in the action, or did not recognize themselves in the situation. Care providers could counteract fragmentation by a caring based on attentive interest in the interaction, valuing the person behind the dementia disease, using an individual perspective considering the impact of the dementia disease, and striving for mutual interpretation of the shared situation. Caring based on these assumptions could help the patients to keep their world together.

  • 2. Eriksson, Monika
    et al.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of palliative care research.
    Care dependence: a struggle toward moments of respite2008In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 17, no 3, p. 220-36Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to describe people's experiences of being dependent on others for care in their final stage of life, as well as what they felt made their experience of being dependent easier or more difficult. The phenomenological-hermeneutical method was chosen, where data collection consisted of open-ended interviews with nine people undergoing palliative care at a hospice unit or at home. The meaning of being care dependent is described via the following themes: changed relationship with oneself and with others, striving to adapt oneself to the situation, obstacles, and opportunities along the way while dependent. The result is described as an effort, a journey from independence to moments where it was possible to rest and recuperate while struggling with care dependency. Nursing staff require knowledge and understanding of experiences with care dependency to make life easier for people during increasing dependency in the final stage of life.

  • 3.
    Hansebo, Görel
    et al.
    Karolinska institutet.
    Kihlgren, M
    Patient life stories and current situation as told by carers in nursing home wards.2000In: Clinical Nursing Research, ISSN 1054-7738, E-ISSN 1552-3799, Vol. 9, no 3, p. 260-79Article in journal (Refereed)
    Abstract [en]

    Knowing a patient's life story is important for good nursing care of frail and vulnerable elderly people with cognitive impairments. The aim of the study was to compare patients' life stories and current situations as told by carers before and after 1 year of supervision, in which the Resident Assessment Instrument was used as a basis for individualized nursing care. Qualitative content analysis was used to disclose changes and to enable descriptions of patterns. After the intervention, two overall perspectives emerged from the analysis: the patient as a unique person with resources and abilities, despite limitations, and the carers' awareness of their own professional approach. It seemed as if the supervision and the use of a comprehensive and detailed assessment tool contributed to increased knowledge about the patients and to efforts to see them as real persons behind the dementia surface.

  • 4.
    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.

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