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  • 101.
    Tranberg, Mattias
    et al.
    Lund University.
    Rasmussen, Birgit H.
    Lund University;Region Skåne.
    Fürst, Carl Johan
    Lund University;Region Skåne.
    Friedrichsen, Maria
    Linköping University.
    Benzein, Eva
    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.
    Öhlén, Joakim
    University of Gothenburg.
    Möten mellan människor: kulturkrockar i den palliativa vården2016In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 33, no 3, p. 27-31Article in journal (Refereed)
  • 102.
    Tryselius, Kristina
    et al.
    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.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ideas of home in palliative care research: a concept analysis2018In: Nursing Forum, ISSN 0029-6473, Vol. 53, no 3, p. 383-391Article in journal (Refereed)
    Abstract [en]

    1 Aim

    To explore the concept of home and its' expressed spatialities in current palliative care research.

    2 Background

    Home is a central environment for living, caring, and dying. However, pure investigations of the sets of ideas linked to the concept seemed missing. Although identified as an important location, spatial perspectives expressed through the concept of home appeared unexplored.

    3 Design

    Rodgers' evolutionary concept analysis.

    4 Data sources

    Scientific articles published between January 2009 and September 2015.

    5 Review methods

    Rodgers' evolutionary concept analysis. Resulting attributes were explored from two geographically informed spatial perspectives.

    6 Results

    As main results, six attributes were identified and explored: Home as actor—capable of acting; emotional environment—something people have feelings for; place—a part of personal identity and a location; space—complex and relational spatial connections and a site for care; setting—passive background and absolute space; becoming—a fluid spatiality constantly folded. Examples of attributes and suggestions for further concept development were identified.

    7 Conclusions

    The concept reflects various sets of ideas as well as expressing both relational and absolute perspectives of space. The most challenging for nursing research and practice seems to be investigation, operationalization, and testing the implementation of sets of ideas reflecting a relational thinking of space.

  • 103.
    Wallerstedt, Birgitta
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Andershed, Birgitta
    Högskolan i Gjörvik, Norge;Ersta Sköndal University College.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Family members´caregiving situation in palliative home care when sitting service is received: the understanding of multiple realities2014In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 12, no 6, p. 425-437Article in journal (Refereed)
    Abstract [en]

    Objective: To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.

    Methods: Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation

    Results: Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.

    Significance of the research: Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

  • 104.
    Wallerstedt, Birgitta
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Behm, Lina
    Lund University.
    Alftberg, Åsa
    Malmö University.
    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.
    Nilsen, Per
    Linköping University.
    Ahlström, Gerd
    Lund University.
    Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden2018In: Healthcare, E-ISSN 2227-9032, Vol. 6, no 2, article id 46Article in journal (Refereed)
    Abstract [en]

    Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.

  • 105.
    Wallerstedt, Birgitta
    et al.
    Örebro Universitet.
    Benzein, Eva
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Andershed, Birgitta
    Högskolan i Gjøvik.
    Sharing living and dying: A balancing act between vulnerability and a sense of security. Enrolled nurses’ experiences of working in the sitting service for dying patients at homesafety.2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 295-303Article in journal (Refereed)
    Abstract [en]

    Objective: To describe enrolled nurses' (ENs') experiences of working in a sitting service for dying patients at home (SSH).

    Method: The ENs who participated in this study had permanent jobs in community care/ primary care, but were also employed part time in a special home-sitting service organization in a municipality in the south of Sweden. Data were collected by four focus group interviews with 17 enrolled nurses. Qualitative content analysis was used to analyze the data.

    Results: Care-giving in SSH was a balancing act between a sense of security and a feeling of vulnerability. Feeling secure and valued and that one is developing both professionally and personally, stemmed from working in partnership, whereas a feeling of vulnerability was associated with managing closeness and distance, being a mediator, having responsibility and feeling guilty, feeling hindered from doing good, facing loneliness, and affecting private lives.

    Significance of results: SSH makes it possible for people who are terminally ill to remain at home until they die. If the SSH organization were not an option for dying patients and their families, the pressure on the healthcare would be dramatically increased.

  • 106.
    Wallerstedt, Birgitta
    et al.
    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.
    Schildmeijer, Kristina
    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.
    What is palliative care?: Perceptions of healthcare professionals2019In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 33, no 1, p. 77-84Article in journal (Refereed)
    Abstract [en]

    Background Despite increased attention and knowledge in palliative care, there is still confusion concerning how to interpret the concept of palliative care and implement it in practice. This can result in difficulties for healthcare professionals in identifying patients whom would benefit from palliative care, which, in turn, could lead to a delay in meeting patients' needs. Aim To explore healthcare professionals' perceptions of palliative care. Method Data were collected through twelve interprofessional focus group interviews in community care and hospital wards in south Sweden (n = 74). All interviews were analysed with latent content analysis. Results Three domains were revealed: first, a blurred conceptual understanding as participants described palliative care using synonyms, diagnoses, phases, natural care and holism; second, a challenge to communicate transitions concerned the importance of how and when the transition to palliative care was communicated and documented; finally, a need for interprofessional collaboration was described as well as the consequences for severely ill persons, relatives and healthcare professionals when it was not established. Conclusion The perceptions about how to interpret palliative care differed as well as when palliative care should be offered and decided, which might have practical consequences. How long a person has left to live is of great significance for decision-making, caregiving and preparation in palliative care. The challenge is to use interprofessional communication to promote understanding and collaborate across varied care levels. Integrating palliative care across diverse care levels could be one way to reduce the ambiguity of palliative care.

  • 107.
    Wallerstedt, Birgitta
    et al.
    Ersta Sköndal Högskola.
    Sahlberg Blom, Eva
    Örebro Universitet.
    Benzein, Eva
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Andershed, Birgitta
    Högskolan i Gjörvik, Norge ; Ersta SKöndal Högskola.
    Identification and documentation of persons being in palliative phase regardless of age, diagnosis and places of care, and their use of a sitting service at the end of life2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 3, p. 561-568Article in journal (Refereed)
    Abstract [en]

    Identification and documentation of persons being in palliative phase regardless of age, diagnosis and places of care, and their use of a sitting service at the end of life Background: Older persons and persons with diseases other than cancer are often discriminated against when applying for palliative care despite growing numbers of both older persons and individuals with chronic diseases. An intention for palliative care in Sweden is that all persons in the final stage of life, irrespective of age, domicile, diagnosis, and care place shall have access to palliative care on equal terms. One way to support these persons in final stage of life and their relatives is to offer sitting service. Aims: To describe individuals who were identified and documented as being in a palliative phase in a Swedish municipality, with respect to demographics, use of a sitting service, continuity of care in the last month of life and the place of death. A second aim was to describe and compare the groups who received/did not receive sitting services related to the aforementioned variables. Method: Retrospective data from nursing records and palliative care identification forms were analyzed with descriptive and analytic statistical methods. Findings: Among individuals deceased during 2007, 51% were identified and documented as being in palliative phase. The majority was older people (mean 83 years) with a noncancer diagnosis (58%). Twenty-eight individuals (16%) had received a sitting service between 8 and 249 hours (one extreme value = 2211). It is indicated that sitting service significantly increased the possibility of dying at home (p = 0.00004), but did not affect how often the place of care changed during the last month of life. Limitation: A small sample from a Swedish context must be considered. Conclusion: These results can be related to an awareness in the municipality that led to adopting the concept of palliative care as not only for those with a cancer diagnosis.

  • 108.
    Wallerstedt, Birgitta
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Schildmeijer, Kristina
    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.
    Sandgren, Anna
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Supporting QoL versus "having nothing more to do": staff´s perceptions of palliative care2017In: Presented at the 15th World Congress of the European Association for Palliative Care (EAPC), Madrid, Spain, May 18-20, 2017, 2017Conference paper (Other academic)
  • 109.
    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

  • 110.
    Årestedt, Liselott
    et al.
    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.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Rämgård, Margareta
    Malmö University.
    A shared respite: The meaning of place for family well-being in families living with chronic illness2016In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30308Article in journal (Refereed)
    Abstract [en]

    Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite.'' This main theme included three subthemes: "a place for relief,'' "a place for reflection,'' and "a place for re-creation.'' These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

  • 111.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    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.
    Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care2015In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 21, no 2, p. 206-231Article in journal (Refereed)
    Abstract [en]

    Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families’ stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed.

  • 112.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    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.
    Living as a family in the midst of chronic illness2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

    Background

    Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

    Design

    A qualitative design with a FSN approach was chosen.

    Method

    Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

    Results

    The phenomenon can be described as an ongoing movement towards well-being. The results included two themes and five sub-themes. The first theme was ‘Co-creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co-creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

    Conclusions

    Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co-create a context for living with illness. They also co-create a context for alternative ways of everyday life.

    Relevance to clinical practice

    Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations

  • 113.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ramgard, Margareta
    Malmö University.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Experiences of encounters with healthcare professionals through the lenses of families living with chronic illness2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 3-4, p. 836-847Article in journal (Refereed)
    Abstract [en]

    Aims and objectivesTo describe and explore the experience of healthcare encounters in families living with chronic illness. BackgroundLiving with chronic illness is a family concern and often includes frequent encounters with healthcare professionals. These encounters affect how persons with illness and family members handle everyday life. Disease-related explanations are perceived by healthcare professionals as being of higher importance than the actual experience of illness, even though patients are concerned with issues involving their everyday life. DesignA descriptive design with a qualitative approach. MethodsNarrative family interviews were conducted with twelve families, using a qualitative content analysis. ResultsOne main category was indicated following analysis, specifically The impact of an accompanying family member. Additionally, three subcategories were revealed; The importance of collaboration, Mutual understanding, A desire to be confirmed in one's illness. Conclusions and relevance to clinical practiceHaving a participating family member increased the sense of power in families during encounters with healthcare professionals. This participation constitutes a level of support, making it easier for families to handle everyday life due to illness. Family members are, in most cases, included in discussions and decisions, both before and after encounters, and it should be a natural for healthcare professionals to invite them to the encounter too. This is an offer that may not fit every family, but the person with illness or the family should at least have the opportunity to choose.

123 101 - 113 of 113
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