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  • 1.
    Andershed, Birgitta
    et al.
    Örebro University ; Ersta Sköndal University.
    Werkander Harstäde, Carina
    Karolinska Institute ; Gotland University College.
    Next of kin's feelings of guilt and shame in end-of-life care2007In: Contemporary Nurse: health care across the lifespan, ISSN 1037-6178, E-ISSN 1839-3535, Vol. 27, no 1, p. 61-72Article in journal (Refereed)
    Abstract [en]

    In this study the aim was to explore and describe next of kin’s feelings of guilt and shame in end-of-life care via secondary analysis of 47 qualitative interviews. In the analysis categories and subcategories emerged which conveyed how the next of kin experienced guilt; not having done or talked enough, being absent at important events or making errors of judgement. Categories conveying feelings of shame were situations where the next of kin felt inferior, was ashamed on behalf of the dying person and when family conflicts became apparent. Receiving help and support in order to make the remaining period as pleasant as possible can facilitate the next of kin’s sense of having fulfilled their duties and responsibilities and therein reduce feelings of guilt and shame. It is apparent that these feelings should be taken into account and the next of kin should receive support to increase their well-being during the remaining time in end-of-life care and the grieving period.

  • 2.
    Blomberg, Karin
    et al.
    Örebro University, Sweden.
    Lindqvist, Olav
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Söderman, Annika
    Örebro University, Sweden.
    Östlund, Ulrika
    Uppsala University, Sweden;Region Gävleborg, Sweden.
    Translating the Patient Dignity Inventory2019In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, no 7, p. 334-343Article in journal (Refereed)
    Abstract [en]

    Background: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden. Aims: To translate the PDI into Swedish, including cultural adaptation for clinical use. Methods: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs). Findings: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs. Conclusion: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.

  • 3.
    Bylund-Grenklo, Tove
    et al.
    University of Gävle, Sweden;Karolinska institutet, Sweden.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sandgren, Anna
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Östlund, Ulrika
    Uppsala university, Sweden;Örebro university, Sweden.
    Dignity in life and care: the perspectives of Swedish patients in a palliative care context.2019In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, no 4, p. 193-201Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.

    AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.

    METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.

    RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.

    CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.

  • 4.
    Söderman, Annika
    et al.
    Örebro University, Sweden.
    Östlund, Ulrika
    Uppsala University, Sweden;Region Gävleborg, Sweden.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Blomberg, Karin
    Örebro University, Sweden.
    Dignity-conserving care for persons with palliative care needs — identifying outcomes studied in research: an integrative review2020In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-19Article, review/survey (Refereed)
    Abstract [en]

    Objectives

    With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.

    Methods

    An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.

    Results

    Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.

    Significance of results

    The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

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  • 5.
    Wallin, Kim
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hörberg, Ulrica
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Elmqvist, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Enablers and barriers in ambulance clinical placements – a mentor perspective2019In: Presented at Ambulans2019PreHospen: Ambulanssjukvårdens roll i morgondagens akutsjukvård, Stockholm, Sweden, April 2-3, 2019, 2019Conference paper (Refereed)
    Abstract [en]

    Background: The importance of clinical placements for nursing students to be able to integrate theory and practice and develop clinical competence are described in literature. Recent research in the Swedish prehospital context has shown that there possibly are differences in the preparations among ambulance nursing students before entering their clinical placements in accordance with studies in other countries. Studies have also highlighted difficulties in creating a good learning environment in the context of prehospital emergency care. The role of the mentor in supporting these students during clinical placements via an individualized mentorship model has proven to be of most importance. At the same time the role of the mentor is described as demanding, undefined and lacking support from both universities and ambulance services. In the Swedish educational system, the voice of the mentor is missing in research in order to develop and enhance the learning environment during clinical placements.

    Purpose: To describe mentors ‘experiences of enablers and barriers for supervision during ambulance clinical placements.

    Methods: Individual interviews were conducted with 20 mentors from 10 ambulance districts from all parts of Sweden. The interviews were analysed according to qualitative content analysis.

    Results/Conclusions: Preliminary findings indicates that the mentors need specific competence, further education and improved support from universities and ambulances services to feel competent and safe. They are forced to adjust their learning strategies to the unique context of prehospital emergency care and are constantly drawn between responsibilities towards the patient and the student. The role and the assignment are unclear and they are in need of support and structure. The competence and attitudes of the team colleague are of high importance for the mentors’ perceived support.

  • 6.
    Wallin, Kim
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hörberg, Ulrica
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Elmqvist, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Preceptors’ experiences of student supervision in the emergency medical services: a qualitative interview study2020In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 84, p. 1-8, article id 104223Article in journal (Refereed)
    Abstract [en]

    Background

    Clinical placements play a central part in the education of future emergency medical services (EMS) staff and their development of clinical skills and competence. A key aspect of students' integration of theory and praxis and development into an independent clinician is a supportive mentorship with the preceptor. However, students report barriers for learning within the EMS, while the preceptors' experiences of their role have received scant attention in research.

    Objectives

    To describe preceptors' experiences of student supervision in the EMS during clinical placements.

    Design

    A descriptive qualitative design was used.

    Participants and setting

    Twenty specialist nurses were recruited among EMS staff from all parts of Sweden.

    Methods

    Data were collected using individual interviews and analyzed with latent qualitative content analysis.

    Findings

    EMS preceptors develop a competence in combining caring and learning adapted to individual student needs when facing students with varying needs in an ever-changing healthcare setting. A trustful relationship between student and preceptor is fundamental when coping with a dual responsibility for student and patient needs. However, several aspects in the EMS setting hinders the preceptors' ability to support the development of the students' independence. Surrounding support structures are important if the preceptors are to feel safe and secure in their role as assessor, teacher and ambulance nurse.

    Conclusions

    Preceptors need to develop a didactic flexibility through preceptor courses adapted to the complex premises found in the EMS. Ambulance services and universities should recognize the importance of preceptors´ colleagues, student continuity, university support and cooperation for improving quality and clarity in supervision during clinical placements.

  • 7.
    Wallin, Kim
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hörberg, Ulrica
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Elmqvist, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Prehospital emergency nurses' experiences as clinical supervisors2018In: Presented at the 3rd Global Conference on Emergency Nursing and Trauma Care, Noordwijkerhout, Netherlands, October 4-6, 2018, 2018Conference paper (Refereed)
  • 8.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Guilt and shame in end-of-life care: the next-of-kin's perspectives2012Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin’s experiences of guilt and shame in end-of-life care.

    Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin’s experiences of guilt (Study III), and shame (Study IV) in end-of-life care.

    Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self.  The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin’s self.

    Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

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  • 9.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Skuld och skam2013In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt & Cecilia Håkanson, Lund: Studentlitteratur AB, 2013, 1, p. 213-224Chapter in book (Other academic)
  • 10.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andershed, B.
    Brunt, David
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Roxberg, Åsa
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Guilt and shame in end of life care: the next of kin's perspective2013In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 49, p. S376-S377Article in journal (Other academic)
  • 11.
    Werkander Harstäde, Carina
    et al.
    Karolinska Institute.
    Andershed, Birgitta
    Good palliative care: how and where?: the patients’ opinions2004In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 6, no 1, p. 27-35Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe what patients with cancer who are in the final stage of life consider to be good palliative end-of-life care and where they think such care should be carried out. Nine patients receiving palliative end-of-life care were interviewed and the material was analyzed using Grounded Theory. Three main categories (and 7 subcategories) emerged during the analysis: safety, participation, and trust. They were conceptualized metaphorically as a wheel that rolls along smoothly as long as the care is good and all 3 categories are present. The concepts of safety, participation, and trust were interwoven with the patients’ beliefs about where this care should be carried out. The majority said that they wanted to be cared for in the hospital.

  • 12.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andershed, Birgitta
    Ersta Sköndal University College;Ersta Hospital.
    It was as Good as it Could be: A Family Member's Non-Experiences of Guilt and Shame in End-Of-Life Care2015In: Journal of Palliative Care & Medicine, E-ISSN 2165-7386, Vol. 5, no 5, p. 1-6, article id 1000232Article in journal (Refereed)
    Abstract [en]

    Objective: This study is part of a larger project, “Guilt and shame in end-of-life care – the next-of-kin’s perspective”. The aim was to explore and interpret a family member’s situation without feelings of guilt and shame and describe reasons for non-experiences of these feelings.

    Methods: An exploratory case study was employed to investigate and achieve an in-depth, in context understanding of the phenomenon from an informant directly involved in the activities being studied. The data material consisted of two in-depth interviews, analyzed in a hermeneutic way in accordance with Gadamer. 

    Result: Seven subthemes appeared “The mother received good care with clear planning”, “They became aware of the inevitable death”, “The mother knew how she wanted things to be”, “Mutual understanding and care between mother and daughter”, “They could make the most of the time that was left”, “The family was together during the dying”, and “Both the daughter and her mother could handle and see meaning in the situation”. These subthemes resulted in a main theme: “There wasn’t much we could have done differently. It was as good as it could be”. Three interpretations emerged that can decrease the risk of feelings of guilt and shame: 1) knowing that the loved one is receiving professional care of good quality, 2) family awareness of the situation and trusting and supportive relationship with the professionals, and 3) inner and external resources and open communication with each other.

    Conclusion: The study shows the importance of professionals being involved in the family situation, having the courage to be sensitive towards the patient’s and the family member’s requests in situations where there is dying and death. Being aware of the suggested interpretations can decrease the risk of feelings of guilt and shame.

  • 13.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andershed, Birgitta
    Roxberg, Åsa
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Brunt, David
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Feelings of guilt: Experiences of next-of-kin in end-of-life care2013In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 15, no 1, p. 33-40Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to gain a greater understanding of the experiences of guilt of the next-of-kin in end-of-life care. Seventeen next-of-kin who had lost a loved one were interviewed with a focus on possible experiences of guilt. A Gadamerian-based hermeneutic approach to interpret these experiences was used. The interpretation showed that next-of-kin’s experiences of guilt emanated from a situation where the next-of-kin had a moral view on what was the right thing to do, it could also originate from a wish to do the best possible for the dying person out of love for this person. The situation could also involve both these aspects.  The way in which the situation was handled, could, if the next-of-kin felt that s/he did not fulfill her/his commitments, omitted or neglected the dying person or was the cause of something, lead to experiences of guilt. The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals are and should be aware of. Acknowledgement of experiences of guilt can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin through bereavement.

  • 14.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Blomberg, Karin
    Örebro University.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Östlund, Ulrika
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Uppsala University;Region Gävleborg.
    Dignity-conserving care actions in palliative care: an integrative review of Swedish research2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 8-23Article in journal (Refereed)
    Abstract [en]

    Background: Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self-image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons’ dignity is a crucial challenge for professional nurses. The ‘Dignity Care Intervention’ addresses the multidimensionality of dignity by identifying patients’ dignity-related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity.

    Methods: An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms ‘dignity’ and ‘palliative care’. Result sections of articles and theses were reviewed for dignity-conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov’s model of dignity.

    Results: Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision-making. Additionally, nurses’ perceptiveness towards the patients was a core approach.

    Conclusion: The review offers culturally relevant suggestions on how to address specific dignity-related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person-centred palliative care that will conserve patients’ dignity

  • 15.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Roxberg, Åsa
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Mälardalen University;Haraldsplass University College, Norway.
    The room as metaphor: next-of-kin's experiences in end-of-life care2015In: International Journal of Palliative Care, ISSN 2356-7074, Vol. 2015, article id 357827Article in journal (Refereed)
    Abstract [en]

    The “room” in end-of-life is a phenomenon that needs deeper understanding as it is a dimension that shows how health and suffering are shaped. Research on the concept of room was chosen as theoretical foundation in this study in order to reach a profound understanding of the next-of-kin’s “room” in end-of-life care. Lassenius’s hermeneutic interpretation inmetaphorical language was used as an deductive-inductive approach to the empirical data. The data material comprised 33 interviews with next-of-kin about their experiences of end-of-life care when being close to a relative dying from a cancer disease. The analysis of the data formed four cases: the Standby, the Asylum, the Wall, and the Place.These cases lend their voices to the experiences of the next-of-kin in the study.The findings of this study explain and may well assist nurses to understand the experiences of being next-of-kin in end-of-life care as forming a room of rest from the suffering, a room of controlling the suffering, a room of hiding from the suffering, and a room of belonging.

  • 16.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences. Karolinska Institutet.
    Roxberg, Åsa
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Andershed, Birgitta
    Gjovik University College, Gjovik, Norway.
    Brunt, David
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Guilt and shame: a semantic concept analysis of two concepts related to palliative care2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 4, p. 787-795Article in journal (Refereed)
    Abstract [en]

    Background

    The theoretical viewpoint of the study was based on the fundamental motive in caring science; the suffering person and his/her health and life situation, which according to the philosophy of palliative care also includes the next-of-kin. The latter often wish to participate in the care of their loved ones and it is thus important for them to be able to make decisions that can generate a meaningful participation. Unfulfilled obligations or wrong decisions, concerning their dying relative, can result in experiences of guilt and shame in relation to the care of the loved one. A semantic concept analysis can provide a deeper understanding of these concepts and create a deeper insight into what the concepts mean for the individual.

     

    Aim

    The aim of the study was to elucidate the meaning of and the distinction between the concepts of guilt and shame.

     

    Methods

    Semantic concept analysis based on Koort and Eriksson.

     

    Findings

    The findings show that guilt and shame are two separate concepts. Guilt contains meaning dimensions of being the cause of and sin. Shame contains meaning dimensions of something that gives rise to shame and ability to experience shame. The synonyms for each concept do not overlap each other

     

    Conclusion

    The semantic analysis creates an understanding of the concepts ontologically and provides a basis for theoretical, contextual and clinical understanding and development.

  • 17.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Roxberg, Åsa
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Mälardalen University.
    Brunt, David
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andershed, Birgitta
    Ersta Sköndal University College.
    Next of Kin's Experiences of Shame in End-of-Life Care2014In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 16, no 2, p. 86-92Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to gain a greater understanding of the experiences of shame of next of kin in end-of-life care. Seventeen next of kin who had lost a family member were interviewed. A method inspired by Gadamer's hermeneutic approach was used to interpret possible experiences of shame and to discuss these interpretations. The result showed that next of kin's experiences of shame are linked to their perception of the remaining time and are guided by views on morality and what is right and wrong. Shame can occur when the next of kin are involved and actually cause harm to the family member as well as in situations that are beyond their control. Shame can also involve actions that have nothing to do with what they have actually done but is instead a shame that is placed on them by others, for example, health professionals or relatives. Shame is interpreted as experiences of ignominy, humiliation, and disgrace. Second-order shame is also found. It is important that health professionals are aware of these experiences of unhealthy shame when they meet and support next of kin in end-of-life care.

  • 18.
    Werkander Harstäde, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sandgren, Anna
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Confronting the Forthcoming Death: A Classic Grounded Theory2016In: Journal of Palliative Care & Medicine, E-ISSN 2165-7386, Vol. 6, article id 289Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to develop a classic grounded theory of patients in palliative care. Methods: A classic Grounded Theory methodology was used to conceptualize patterns of human behavior. Twenty-seven interviews with patients in palliative care and two autobiographies written by persons receiving palliative care were analyzed. Result: “Confronting the forthcoming death” emerged as the pattern of behavior through which patients deal with their main concern, living in uncertainty of a death foretold. The theory involves four strategies; Seeking concrete knowledge, Shielding off, Seeing things through, and Embracing life. Holding on to hope and Suffering are also ever present. Conclusion: The theory shows that there is no easy way straight ahead; patients strive to confront the situation as well as they can, both wanting and not wanting to know what lies ahead. For health professionals, knowledge about how patients use different strategies, which can be used in tandem or succession, or shifted back and forth between over time, to confront their imminent deaths, can create an awareness of how to encounter patients in this uncertainty.

  • 19.
    Östlund, Ulrika
    et al.
    Uppsala University.
    Blomberg, Karin
    Örebro University.
    Söderman, Annika
    Örebro University.
    Werkander Harstäde, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Carina Werkander Harstäde.
    How to conserve dignity in palliative care: suggestions from older patients, significant others, and healthcare professionals in Swedish municipal care2019In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 18, article id 10Article in journal (Refereed)
    Abstract [en]

    Background: An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity CareIntervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted toa Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions.These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest careactions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), andhealth care professionals (HPs) in municipality care in Sweden.Methods: This study used a descriptive design with a qualitative approach. Data from 20 participants were collectedthrough semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9)and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysedusing qualitative content analysis with the Chochinov model of dignity as framework.Results: With the Chochinov model of dignity as a framework, care actions based on suggestions from the participantswere identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Socialdignity inventory. The study found both specific concrete care actions and more general approaches. Such generalapproaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours.However, these general approaches could also be relevant as specific care actions to conserve dignity in relation tocertain issues. Care actions were also found to be linked to each other, showing the importance of a holisticperspective in conserving dignity.Conclusions: As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant careactions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. Theadapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.Keywords: Care actions, Community nursing, DCI-SWE, Dignity, Dignity care intervention, End of life care, Palliative care,Person centred, Sweden

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