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  • 1.
    Bergman, Mette
    et al.
    Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Neurogeriatrics, Karolinska Institutet.
    Graff, Caroline
    Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Neurogeriatrics, Karolinska Institutet.
    Eriksdotter, Maria
    Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Clinical Geriatrics, Karolinska Institutet; Department of Geriatric Medicine, Memory Clinic M51, Karolinska University Hospital.
    Fugl-Meyer, Kerstin
    Department of Neurobiology, Care Science and Society, Division of Social Work, Karolinska Institutet; Division of Social Work, Karolinska University hospital.
    Schuster, Marja
    The Swedish Red Cross University College, Department of Technology and Welfare.
    The meaning of living close to a person with Alzheimer disease2016In: Medicine, Health care and Philosophy, ISSN 1386-7423, E-ISSN 1572-8633, Vol. 19, no 3, p. 341-349Article in journal (Refereed)
    Abstract [en]

    Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease (AD). The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses' lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses' lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them trapped at home, both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended "lived space" with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective.

  • 2.
    Bergman, Mette
    et al.
    Karolinska University Hospital / Karolinska Institute.
    Graff, Caroline
    Karolinska Institute / Karolinska University Hospital.
    Eriksdotter, Maria
    Karolinska Institute / Karolinska University Hospital.
    Schuster, Marja
    The Swedish Red Cross University College, Department of Technology and Welfare.
    Fugl-Meyer, Kerstin S
    Karolinska University Hospital / Karolinska Institute.
    Overall and domain-specific life satisfaction when living with familial Alzheimer's disease risk: A quantitative approach.2017In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 19, no 4, p. 452-458Article in journal (Refereed)
    Abstract [en]

    In this study, we explored life satisfaction and sense of coherence in relation to biopsychosocial variables in individuals at risk for the development of familial Alzheimer's disease. Forty nine individuals (response rate: 96%) were interviewed. Life satisfaction was found to be high for the majority of participants. Those who were older than the expected age of onset of disease, those <6 years' inclusion in the Familial Alzheimer's disease biomarker study, and males tended to experience positive psychological health. Sense of coherence was positively associated with satisfaction with life as a whole, psychological health, vocation, and economy. Women seem to be more vulnerable than men, and attention should be given to those who have not passed the age of expected symptom onset. Early and recurrent counseling and psychosocial support were found to be essential. Issues related to vocation and economy are areas of concern, and are closely associated with sense of coherence, life satisfaction, and psychological health. This study emphasizes the importance of professional teams working together with the patient and their families.

  • 3.
    Jonsson, Marina
    et al.
    Stockholm County Council / Karolinska Institutet.
    Schuster, Marja
    The Swedish Red Cross University College, Department of Technology and Welfare.
    Protudjer, Jennifer L P
    Karolinska Institutet.
    Bergström, Anna
    Karolinska Institutet.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Public Health and Medicine. Karolinska Institutet.
    Kull, Inger
    Karolinska Institutet / Sachs' Children's Hospital, Södersjukhuset.
    Experiences of Daily Life Among Adolescents With Asthma - A Struggle With Ambivalence2017In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 35, p. 23-29Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: There is limited knowledge about how adolescents with asthma view their disease in daily life and how these views impact on management. The aim of this study was to describe experiences of daily life, with particular focus on thoughts, feelings and management of adolescents with asthma.

    METHODS: In this qualitative study, data were obtained from 10 interviews with adolescents (aged 16-18 years) with asthma recruited from the Swedish population-based prospective birth cohort, BAMSE. Data were analysed through Systematic Text Condensation.

    RESULTS: Experiences of daily life among adolescents with asthma were defined in four categories: Insight and understanding; Asthma not the focus of daily life; Being acknowledged and, Being affected by asthma symptoms. The adolescents had developed an insight into and understanding of their disease, but did not want asthma to be the focus of their daily lives. The adolescents wanted their asthma to be acknowledged, but not to the point that they were defined by their asthma. They reported having many asthma symptoms, especially during physical activity, but also described a desire to feel healthy, "normal" and like their peers.

    CONCLUSIONS: Having asthma in adolescence involves several struggles with ambivalence between adapting socially, feeling healthy and managing one's asthma.

    IMPLICATIONS IN CLINICAL PRACTICE: The provision of person-centred care may be one way to handle the ambivalence among adolescents with asthma and thereby help them to manage their asthma.

  • 4.
    Röing, M
    et al.
    University of Uppsala, Uppsala.
    Hirsch, J
    University of Uppsala, Uppsala.
    Holmström, I
    University of Uppsala, Uppsala.
    Schuster, Marja
    University of Stockholm, Stockholm.
    Making new meanings of being in the world after treatment for oral cancer2009In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 19, no 8, p. 1076-1086Article in journal (Refereed)
    Abstract [en]

    When the mouth is affected by cancer, difficulties in satisfying basic human needs such as eating, tasting, swallowing, and speaking might arise, and the existential significance of the mouth might become obvious. How does it feel to live with these difficulties? What does it mean to be a human being living with the consequences of oral cancer? Five patients with oral cancer were interviewed a median time of 4 years after the beginning of treatment. A hermeneutic research approach was used to understand, explain, and interpret the transcribed interviews and showed how the consequences of oral cancer affected the being-in-the-world of the participants in three ways: existing as oneself, existing in the eyes of others, and existing with others. Against the background of the philosophy of Martin Heidegger, these findings illuminate how essential the mouth is to a human being's identity and existence.

  • 5. Schuster, Marja
    Ammatillinen kohtaaminen: - hoitamisen eksistentiaalinen ulottuvuus2011In: Terveysalan ammatit ja koulutus / [ed] Anne Laiho & Tarita Ruoholinna, Helsingfors: Gaudeamus, 2011Chapter in book (Other academic)
  • 6.
    Schuster, Marja
    Red Cross University College of Nursing.
    Det mellanmänskliga mötet: vårdandets existentiella dimension2013In: Sjuksköterskans kärnkompetenser / [ed] Janeth Leksell & Margret Lepp, Stockholm: Liber, 2013, 1, p. 139-158Chapter in book (Other academic)
  • 7.
    Schuster, Marja
    Red Cross University College of Nursing.
    Hermeneutics as Embodied Existence2013In: International Journal of Qualitative Methods, ISSN 1609-4069, E-ISSN 1609-4069, Vol. 12, p. 195-206Article in journal (Refereed)
    Abstract [en]

    This article explores the possibilities and limits of a hermeneutic way of being in the world, more specifically being a researcher as a part of human, embodied existence. Understanding existence as embodied highlights the subjectivity of a researcher. For a hermeneutic researcher this subjectivity is both a precondition for interpretation and something that might endanger the scientific endeavour. In this article, I examine the possibilities of combining Hans-Georg Gadamer’s empathetic hermeneutics with Paul Ricoeur’s critical hermeneutics as a means of both recognizing and, to some extent, controlling my subjectivity in the research process. With Gabriel Marcel I also argue for hermeneutics as an embodied experience. This is exemplified by my study with a focus on the existential dimensions of the nursing profession. The first part of the article introduces Marcel and his philosophical anthropology concerning our bodily existence as essential for shared lives with others. In the second part, this understanding of self and others is further developed by means of the hermeneutics of Gadamer and Ricoeur. In the third part, I present a way of applying hermeneutics in procedures for interviews, transcription, and analysis of data.

  • 8.
    Schuster, Marja
    Stockholms universitet, Lärarhögskolan i Stockholm, Institutionen för samhälle, kultur och lärande (LHS).
    Profession och existens: en hermeneutisk studie av asymmetri och ömsesidighet i sjuksköterskors möten med svårt sjuka patienter2006Doctoral thesis, monograph (Other academic)
    Abstract [en]

    The purpose of this study is to investigate how nurses constitute themselves in encounters with severely ill suffering patients. The self is understood in existential meaning and it is described and analysed in the context of suffering by means of four research questions: How is the professional self constituted in 1) nurses concepts of being professional 2) nurses concepts of the other, the patient 3) nurses concepts of friendship and love in professional encounters 4) nurses concepts of the body? 14 registered nurses have been interviewed and the texts have been interpreted within a hermeneutic and existential framework, mainly influenced by Paul Ricoeur. When it comes to nurses’ concepts of being professional, the study indicates that there is a tension between the professional, the personal and the private fields of their lives. With the second research question the attention is focused on nurses’ images of patients. The interpretations here evolve in the tension found between nurses’ common concepts of professionalism and of being a patient, and their narrations of actual encounters with patients. The main themes when it comes to love, friendship and profession are proximity and distance and the tension between them. The meaning of the lived body in nurses’ narratives is captured in its most concrete appearance, as a touch.

    The interpretations of the study are further discussed by means of three models for how nurses constitute themselves in the encounter with patients. The asymmetric relation between a nurse and a patient characterizes these models. The dissertation argues for a fourth model that emanates from the existential framework of the study and where the asymmetric character of the relation fades out and gives space for reciprocity in the professional encounter.

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