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  • 1.
    Axelsson, Lena
    Sophiahemmet University.
    Living with haemodialysis close to death - patients' and close relatives' experiences2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis is to generate  understanding and knowledge a bout the experiences of  patients living with haemodialysis, and their close relati ves, near the end of life. In studies I and II we  conducted a series of 31 qualitative interviews over a period of 12 months with 8 severely ill patients  (aged 66–87) treated with haemodialysis. For study I the text of the interviews was analysed using  phenomenological hermeneutics to describe and to el ucidate the meanings of being severely ill living  with haemodialysis when nearing end of life. For study II the text was analysed using qualitative content  analysis to describe inner thoughts and feelings  relating to death and dying of these patients. For studies III and IV, we conducted 14 retrospective qualitative interviews with close relatives of  deceased patients treated with haemodialysis about th eir experiences during end of the patient’s life.  For paper III the interview text was analysed usi ng phenomenological hermeneu tics to describe and  elucidate the meanings of being a close relative at the  end of life of a severely ill family member treated  with maintenance haemodialysis. For paper IV the text was analysed using qualitative content analysis to  describe end of life for the patients from the perspective of their close relatives. The findings of study I suggest that being severely i ll and living with haemodialysis near the end of life  means living with suffering from a deteriorating body, a high symptom burden, and dependence on  advanced medical technology, simultaneously with r econciliation and well-being. The meanings of living  with illness and dialysis are intertwined with the meanings of being old.  Study II shows that thoughts and feelings about deat h and dying are significant and complex for those  living with haemodialysis as they approach the end of life. Patients experience  a multifaceted presence of  death. Their awareness of approaching death may include their repressing of thoughts of death, not as  denial, but to allow them to focus on living as fully as possible the time they have left. Study III shows that close relatives strive to maintain balance and well-being for themselves and for  the patient, which we interpreted as their striving to regain balance, and inner equilibrium in their  changed and challenged rhythm of life. Study IV shows that after gradual deterioration and increasing  care needs, older patients in haemodialysis care with  co-morbidities follow three different main paths at  the end of life: uncertain anticipation of death; awaiting death after dialysis withdrawal; and sudden but  not unexpected death. The ends of their lives are marked by complex symptoms and existential issues  related to haemodialysis treatment and withdrawal, and  their uncertainty of what  to expect at the end of  life suggests the need for increased continuity and coordination of whole person care. Both patients and  their close relatives are often alone with their existential thoughts. In their complex lifeworlds, intertwined meanings  of living with illness and maintenance of life with  haemodialysis treatment near the end of life show that patients live in a borderland of living-dying that is  shared by the close relative. Patients and close relatives focus on living when death is close but uncertain,  with severe illness and the maintenance of life through advanced technology.  Integrating the philosophy of palliative care (with a focus on symptom relief, team work,  communication, relationships, and support of family members) into dialysis care, may support health  care professionals in haemodialysis units and other re nal contexts, to improve the care of severely ill  patients, both earlier in their illness and as they approach the end of their lives.

  • 2.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Carlsson, Nina
    Cohen, S. Robin
    Sawatzky, Richard
    Årestedt, Kristofer
    Measuring quality of life in life-threatening illness: Content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers2019Conference paper (Other academic)
  • 3.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Carlsson, Nina
    Cohen, S Robin
    Sawatzky, Richard
    Årestedt, Kristofer
    Measuring quality of life in life-threatening illness: Content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers2020In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 19, no 1, article id 40Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.

    METHODS: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.

    RESULTS: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.

    CONCLUSIONS: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

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  • 4.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Holm, Maja
    Sophiahemmet University.
    Årestedt, Kristofer
    Intensity of predeath grief and postdeath grief of family caregivers in palliative care in relation to preparedness for caregiving, caregiver burden, and social support2020In: Palliative Medicine Reports, ISSN 2689-2820, Vol. 1, no 1, p. 191-200Article in journal (Refereed)
    Abstract [en]

    Background: The intensity of predeath grief is associated with postdeath grief in family caregivers of patients in palliative care. Different factors during caregiving may influence this association.

    Objective: To examine (1) the intensity of grief in relation to preparedness for caregiving, caregiver burden, and social support, and (2) if these variables moderate associations between predeath and postdeath grief.

    Methods: This prospective correlational study used unpaired t-test to compare grief in relation to preparedness for caregiving, caregiver burden, and social support. Hierarchical multiple linear regression analysis investigated moderation effects. Family caregivers were recruited from 10 palliative homecare facilities. The Anticipatory Grief Scale, Texas Revised Inventory of Grief, Preparedness for Caregiving Scale, Caregiver Burden Scale, and Multidimensional Scale of Perceived Social Support were used. Ethical approval for the study was granted by the Regional Ethical Review Board in Stockholm, Sweden.

    Results: In total, 128 family caregivers participated. Those with high caregiver burden scored significantly higher intensity of predeath but not postdeath grief. Caregiver burden and social support moderated the association between intensity of predeath grief and postdeath grief. There was a stronger association between predeath and postdeath grief among caregivers with low caregiver burden or low social support. Preparedness for caregiving had no moderating effect.

    Discussion: Attention should be directed to caregiver burden and social support during family caregiving, as these variables seem to be significant for the intensity of grief before and after the patient's death. Acknowledging predeath grief during caregiving and recognizing pre- and postdeath grief as parts of the same process are of importance in clinical practice and when designing supportive interventions.

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  • 5.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Lindberg, Jenny
    Öhlén, Joakim
    Håkanson, Cecilia
    Sophiahemmet University.
    Reimertz, Helene
    Fürst, Carl Johan
    Årestedt, Kristofer
    Unmet palliative care needs among patients with end-stage kidney disease: A national registry study about the last week of life2017Conference paper (Other academic)
  • 6.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Lindberg, Jenny
    Öhlén, Joakim
    Håkanson, Cecilia
    Sophiahemmet University.
    Reimertz, Helene
    Fürst, Carl-Johan
    Årestedt, Kristofer
    Unmet palliative care needs among patients with end-stage kidney disease: a national registry study about the last week of life2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244Article in journal (Refereed)
    Abstract [en]

    CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed.

    OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD.

    METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18.5 or N18.9), during 2011 and 2012 were selected.

    RESULTS: 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44% respectively were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/in-patient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.

    CONCLUSION: Even if death is expected, the majority of patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.

  • 7.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Lindberg, Jenny
    Persson, Carina
    End-of-life and palliative care of patients on maintenance hemodialysis treatment: A focus group study2019In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 18, no 1, article id 89Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.

    METHODS: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.

    RESULTS: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.

    CONCLUSIONS: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

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  • 8.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Lindberg, Jenny
    Persson, Carina
    Processes toward the end of life and dialysis withdrawal: Physicians' and nurses' perspectives2020In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 27, no 2, p. 419-432, article id 969733019848050Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory.

    AIM: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease.

    RESEARCH DESIGN AND PARTICIPANTS: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data.

    ETHICAL CONSIDERATIONS: Ethical approval was obtained (Dnr 2014/304-31).

    FINDINGS AND DISCUSSION: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress.

    CONCLUSION: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

  • 9.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Persson, Carina
    Complexities of the processes towards palliative care for patients with end-stage kidney disease: Physicians' and nurses' perspectives2017Conference paper (Other academic)
  • 10.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Björvell, Catrin
    Mattiasson, Anne-Cathrine
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Swedish Registered Nurses' incentives to use nursing diagnoses in clinical practice2006In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, no 8, p. 936-45Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: The purpose of this study was to describe Registered Nurses' incentives to use nursing diagnoses in clinical practice. BACKGROUND: The use of nursing diagnoses is scarce in Swedish patient records. However, there are hospital wards were all nurses formulate and use nursing diagnoses in their daily work. This leads to the question of what motivates these nurses who do use nursing diagnoses in clinical practice. DESIGN: A qualitative descriptive design. METHODS: A purposeful sampling of 12 Registered Nurses was used. Qualitative interviews to collect data and a content analysis were performed. RESULTS: Five categories were identified: identification of the patient as an individual and as a whole, a working tool for facilitating nursing care, increasing awareness within nursing, support from the management and influence on the professional role. The principle findings of this study were: (i) that the Registered Nurses perceived that nursing diagnoses clarified the patient's individual needs and thereby enabled them to decide on more specific nursing interventions, (ii) that nursing diagnoses were found to facilitate communication between colleagues concerning patient care and thus promoted continuity of care and saved time and (iii) that nursing diagnoses were perceived to increase the Registered Nurses' reflective thinking leading to a continuous development of professional knowledge. CONCLUSIONS: The present findings suggest that the incentives to use nursing diagnoses originate from effects generated from performing a deeper analysis of the patient's nursing needs. Further research is needed to test and validate the usability and consequences of using nursing diagnoses in clinical practice. Motivating factors found in this study may be valuable to Registered Nurses for the use and development of nursing diagnoses in clinical care. Moreover, these factors may be of relevance in other countries that are in a similar situation as Sweden concerning application of nursing diagnoses.

  • 11.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet University.
    End of life of patients treated with haemodialysis as narrated by their close relatives2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 776-784Article in journal (Refereed)
    Abstract [en]

    AIM: The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.

    INTRODUCTION: Many patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end-of-life situation.

    DESIGN: Qualitative and descriptive.

    METHODS: Qualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3-13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved.

    FINDINGS: In the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal.

    CONCLUSIONS: Different end-of-life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.

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  • 12.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet University.
    Meanings of being a close relative of a family member treated with haemodialysis2015In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 3/4, p. 447-456Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES:

    To describe and elucidate the meanings of being a close relative of a severely ill family member treated with maintenance haemodialysis approaching the end of life.

    BACKGROUND:

    End-stage renal disease together with comorbidities, haemodialysis treatment and high mortality rates also affects the lives of close relatives, who report burdens and impaired quality of life. To improve care, more understanding is needed of close relatives' experiences during these patients' end of life.

    DESIGN:

    This study has a qualitative interpretative design.

    METHODS:

    Fourteen retrospective qualitative interviews were conducted with close relatives (aged 48-93 years) of deceased patients who had been treated with haemodialysis. The interview text was interpreted using a phenomenological hermeneutical method in three phases.

    RESULTS:

    The findings of the structural analysis were formulated as six themes: Striving to be supportive and helpful without doing harm to the ill person's self; Needing increasing strength and support; Balancing the will to help with one's own ongoing life; Increasing responsibility involving dilemmas; Striving for a good life together in the present and Living with awareness of death.

    CONCLUSIONS:

    Close relatives strive for balance and well-being accompanying their ill family member through the end of life. They are facing moral dilemmas and growing demands as their responsibility increases with the deterioration of their family member. Support from and interaction with the healthcare professionals is then of significance.

    RELEVANCE TO CLINICAL PRACTICE:

    Findings challenge healthcare professionals in haemodialysis settings to identify close relatives' individual resources and needs towards the patients' end of life. Healthcare professionals in haemodialysis settings need to offer close relatives opportunities to talk about the future and what may be expected at end of life, with or without haemodialysis. They should also contact the closest relative after the death as they may need confirmation and closure.

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  • 13.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Jacobson, Stefan H
    Klang, Birgitta
    Living with haemodialysis when nearing end of life2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 1, p. 45-52Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: The aim of this study was to describe and to elucidate the meanings of being severely ill living with haemodialysis when nearing end of life.

    INTRODUCTION: To have end stage renal disease and to be treated with maintenance haemodialysis implies being dependent on lifelong treatment. Several studies have reported that these patients suffer a high symptom burden and an impaired quality of life due to both disease and treatment. In the dialysis unit, where the focus is on handling technology and maintaining life, end of life care may be neglected or overlooked. Nevertheless, mortality rates show that about one-fourth of patients in haemodialysis care are in their last year of life.

    DESIGN: A qualitative interpretative design was used.

    METHODS: Serial qualitative interviews over a period of 12 months were conducted with eight patients (aged 66-87). Altogether text of 31 interviews was interpreted using a phenomenological hermeneutical method in three phases. The study is ethically approved.

    FINDINGS: The structural analysis resulted in 11 subthemes and thereafter the following three themes were formulated; being subordinate to the deteriorating body, changing outlook on life and striving for upheld dignity. The comprehensive interpretation revealed that being severely ill living with haemodialysis near the end of life means living with suffering simultaneously with reconciliation and well-being. Further, the meanings are understood as intertwined with being old.

    CONCLUSIONS: Findings contribute to an increased awareness of the complexities of these patients' life worlds and their meanings, and thus of the importance to listen to their experiences and their understandings. Findings suggest that to integrate the philosophy of palliative care in haemodialysis units may improve care for patients who are living with haemodialysis and approaching the end of their lives.

  • 14.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Klang, Birgitta
    Thoughts on death and dying when living with haemodialysis approaching end of life2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 15-16, p. 2149-59Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To describe inner thoughts and feelings relating to death and dying when living with haemodialysis approaching end of life.

    BACKGROUND: Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the presence of death and dying in the haemodialysis unit.

    DESIGN: A qualitative descriptive design was used. Methods.  A total of 31 qualitative interviews were conducted with eight patients (aged 66-87) over a period of 12 months. Qualitative content analysis was used to analyse data.

    RESULTS: The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and reflections on haemodialysis withdrawal as an hypothetic option.

    CONCLUSIONS: Living with haemodialysis approaching, the end of life involves significant and complex existential issues and suffering, and patients are often alone with their existential thoughts.

    RELEVANCE TO CLINICAL PRACTICE: Nurses and other healthcare professionals in haemodialysis settings need to combine technical and medical abilities with committed listening and communication skills and be open to talking about death and dying, with sensitivity to individual and changeable needs.

  • 15.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Årestedt, Kristofer
    Holm, Maja
    Sophiahemmet University.
    Alvariza, Anette
    Pre- and post-death grief in family caregivers in palliative care in relation to preparedness for caregiving, caregiver burden and social support2020Conference paper (Other academic)
  • 16. Carlsson, Nina
    et al.
    Alvariza, Anette
    Axelsson, Lena
    Sophiahemmet University.
    Bremer, Anders
    Årestedt, Kristofer
    Grief reactions in relation to professional and social support among family members of persons who died from sudden cardiac arrest: A longitudinal survey study2022In: Resuscitation Plus, E-ISSN 2666-5204, Vol. 12, p. 100318-, article id 100318Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symptoms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its association with professional and social support among bereaved family members after a close person's death from sudden CA.

    METHODS: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.

    RESULTS: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.

    CONCLUSIONS: Family members' grief reactions point to the importance of proactive and available support over time to meet family members' needs.

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  • 17. Carlsson, Nina
    et al.
    Alvariza, Anette
    Bremer, Anders
    Axelsson, Lena
    Sophiahemmet University.
    Årestedt, Kristofer
    Symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest2021In: Omega, ISSN 0030-2228, E-ISSN 1541-3764, article id 302228211018115Article in journal (Refereed)
    Abstract [en]

    Sudden cardiac arrest is common and is one of the leading causes of death in the western world, and the sudden loss following cardiac arrest may have a significant impact on bereaved family members' health. Therefore, the aim of this study was to describe symptoms of prolonged grief and self-reported health among bereaved family members of persons who died from sudden cardiac arrest, with comparisons between spouses and non-spouses. This was a cross-sectional observation study with 108 adult family members who completed a questionnaire. A fifth of the family members reported prolonged grief, and problems with self-reported health were common, especially regarding anxiety. Spouses reported more problems with prolonged grief and self-reported health compared with non-spouses. The risk of these family members developing prolonged grief and health problems should be recognized, and professional support should be offered.

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  • 18. Carlsson, Nina
    et al.
    Bremer, Anders
    Alvariza, Anette
    Årestedt, Kristofer
    Axelsson, Lena
    Sophiahemmet University.
    Losing a close person following death by sudden cardiac arrest: Bereaved family members' lived experiences2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 5, p. 1139-1148Article in journal (Refereed)
    Abstract [en]

    The death of a close person has profound impact on people's lives, and when death is sudden there are no possibilities to prepare for the loss. The study aimed to illuminate meanings of losing a close person following sudden cardiac arrest. A qualitative interpretive design was used, and twelve bereaved family members were interviewed. The results show a transition from pending between life and sudden loss during resuscitation and proceeding with life after the sudden loss. These results of being in liminality illuminate the family members' essential narration and the importance of compassionate care throughout this challenging transition.

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  • 19. Carlsson, Nina
    et al.
    Årestedt, Kristofer
    Alvariza, Anette
    Axelsson, Lena
    Sophiahemmet University.
    Bremer, Anders
    Factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest2023In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 38, no 5, p. 454-461Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with an increased risk of prolonged grief disorder and psychological distress.

    OBJECTIVES: The aims of this study were (1) to explore the associations between symptoms of prolonged grief and psychological distress and (2) to identify factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest.

    METHODS: This cross-sectional survey included bereaved adult family members. Demographic data and measures of prolonged grief (Prolonged Grief Disorder-13), anxiety and depression (Hospital Anxiety and Depression Scale), posttraumatic stress (Posttraumatic Stress Disorder Checklist for DSM-5), and perceived social support (Multidimensional Scale of Perceived Social Support) were analyzed using Spearman's correlations (rs) as well as univariate and multiple linear regression analyses.

    RESULTS: In total, 108 family members participated. Significant associations between symptoms of prolonged grief, anxiety, depression, and posttraumatic stress were identified (rs = 0.69-0.79, P < .001). Offered, sought, and/or received professional support from healthcare, lower levels of perceived social support, being a spouse of the deceased, female sex, younger age, and family presence during resuscitation were significantly associated with higher symptom levels of prolonged grief, anxiety, depression, and/or posttraumatic stress.

    CONCLUSIONS: The results indicate that family members with higher levels of symptoms were offered, sought, and/or received professional support. However, because a minority are offered professional support after deaths from cardiac arrest, future interventions need to proactively identify family members in need of support. Furthermore, perceived social support seems to be an important factor for family members of persons who died from cardiac arrest.

  • 20.
    Doveson, Sandra
    et al.
    Sophiahemmet University.
    Fransson, Per
    Axelsson, Lena
    Sophiahemmet University.
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Associations between experiences of treatment decision-making and treatment experiences during the first year of life-prolonging treatment among men with metastatic castration-resistant prostate cancerManuscript (preprint) (Other academic)
  • 21.
    Doveson, Sandra
    et al.
    Sophiahemmet University.
    Holm, Maja
    Sophiahemmet University.
    Axelsson, Lena
    Sophiahemmet University.
    Fransson, Per
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer2021Conference paper (Other academic)
  • 22.
    Doveson, Sandra
    et al.
    Sophiahemmet University.
    Holm, Maja
    Sophiahemmet University.
    Axelsson, Lena
    Sophiahemmet University.
    Fransson, Per
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer - An interview study2020In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 49, article id 101859Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Several life-prolonging treatment options have recently become available for metastatic castration-resistant prostate cancer. However, research regarding patient experiences while undergoing these treatments is scarce. The aim was to explore the perspectives of men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer.

    METHOD: Qualitative interviews were conducted with 16 men as they were starting, undergoing or had completed their first life-prolonging treatment. Interpretive description was used for analysis.

    RESULTS: The results illuminate the complexity of facing life-prolonging treatment, with interlaced dimensions beyond just the outcome, and where the men described other dimensions of their lives in relation to the treatment. The results are presented as 4 themes; Considering treatment when the remainder of life is at stake, Preparing for the life-prolonging treatment after deciding to go through with it, Considering the prospect of the life-prolonging treatment not being successful and Reflecting on death and dying in the light of a life-limiting illness.

    CONCLUSIONS: The quality and content of the remainder of life are central for men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. This is important when weighing desired treatment outcomes against side effects, and when reflecting upon whether going through with treatment would be worth it or not. The results illuminate the importance of encouraging men at this stage to express expectations, hopes and fears regarding the treatment and the future when considering life-prolonging treatments. Nurses working with these patients are important in the decision-making process and in evaluating treatments, to detect needs for interventions.

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  • 23.
    Doveson, Sandra
    et al.
    Sophiahemmet University.
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Fransson, Per
    Axelsson, Lena
    Sophiahemmet University.
    Men's experiences related to decision-making in life-prolonging treatments of metastatic castration-resistant prostate cancer: A wish for a process adapted to personal preferences: A prospective interview studyManuscript (preprint) (Other academic)
  • 24.
    Doveson, Sandra
    et al.
    Sophiahemmet University.
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Fransson, Per
    Axelsson, Lena
    Sophiahemmet University.
    Mäns erfarenheter av beslutsfattande om livsförlängande behandlingarvid obotlig, avancerad prostatacancer: En önskan om en personligt anpassad process2022Conference paper (Other academic)
  • 25. Norinder, Maria
    et al.
    Axelsson, Lena
    Sophiahemmet University.
    Årestedt, Kristofer
    Grande, Gunn
    Ewing, Gail
    Alvariza, Anette
    Enabling professional and personal growth among home care nurses through using the Carer Support Needs Assessment Tool Intervention: An interpretive descriptive study2023In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 13-14, p. 4092-4102Article in journal (Refereed)
    Abstract [en]

    AIM: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention.

    BACKGROUND: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice.

    DESIGN: This longitudinal study adopted an inductive qualitative approach using interpretive description.

    METHODS: Interviews were conducted at two time points. A total of 22 interviews took place with 12 nurses recruited from six specialised home care services. Data were analysed using interpretive description.

    RESULTS: Nurses' everyday clinical practice changed while learning to use the Carer Support Needs Assessment Tool Intervention, and they experienced professional and personal growth. Their supportive inputs shifted from being reactive towards being more proactive. Their approach changed from taking on great professional responsibility, towards a shared responsibility with family caregivers. The support altered from ad hoc contacts in the hallway, towards scheduled trustful conversations. Nurses were concerned about the amount of time and energy this kind of support might require. They pointed to the importance of holding good nursing skills to conduct this new way of having conversations.

    CONCLUSION: Nurses' everyday clinical practice can be further developed through the use of the Carer Support Needs Assessment Tool Intervention. Nurses may develop both professionally and personally, increasing their ability to provide person-centred support.

    RELEVANCE TO CLINICAL PRACTICE: With the use of the Carer Support Needs Assessment Tool Intervention, nurses can create trusting conversations with family caregivers of patients with life-threatening illnesses cared for in specialised home care.

    REPORTING METHOD: Reporting of the study follows the Consolidated Criteria For Reporting Qualitative Research (COREQ) checklist (File S1).

    PATIENT OR PUBLIC CONTRIBUTION: Participating nurses were involved in discussing the study design.

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  • 26. Norinder, Maria
    et al.
    Axelsson, Lena
    Sophiahemmet University.
    Årestedt, Kristofer
    Grande, Gunn
    Ewing, Gail
    Alvariza, Anette
    Family caregivers' experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention: A qualitative study2023In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 66, article id 102412Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

    METHODS: The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

    RESULTS: Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

    CONCLUSION: The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers' experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

  • 27. Norinder, Maria
    et al.
    Årestedt, Kristofer
    Axelsson, Lena
    Sophiahemmet University.
    Grande, Gunn
    Ewing, Gail
    Alvariza, Anette
    Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention2023In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

    METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

    RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

    SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

  • 28. Norinder, Maria
    et al.
    Årestedt, Kristofer
    Lind, Susanne
    Axelsson, Lena
    Sophiahemmet University.
    Grande, Gunn
    Ewing, Gail
    Holm, Maja
    Sophiahemmet University.
    Öhlén, Joakim
    Benkel, Inger
    Alvariza, Anette
    Higher levels of unmet support needs in spouses are associated with poorer quality of life: A descriptive cross-sectional study in the context of palliative home care2021In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, no 1, article id 132Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care.

    METHODS: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses.

    RESULTS: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health.

    CONCLUSION: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.

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  • 29. Sandgren, Anna
    et al.
    Axelsson, Lena
    Sophiahemmet University.
    Bylund Grenklo, Tove
    Benzein, Eva
    Family members' expressions of dignity in palliative care2017Conference paper (Other academic)
  • 30. Sandgren, Anna
    et al.
    Axelsson, Lena
    Sophiahemmet University.
    Bylund-Grenklo, Tove
    Benzein, Eva
    Family members' expressions of dignity in palliative care: A qualitative study2021In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 35, no 3, p. 937-944Article in journal (Refereed)
    Abstract [en]

    Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.

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  • 31.
    Wallin, Jeanette
    et al.
    Sophiahemmet University.
    Jacobson, Stefan H
    Axelsson, Lena
    Sophiahemmet University.
    Lindberg, Jenny
    Persson, Carina I
    Stenberg, Jenny
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Discrepancy in responses to the surprise question between hemodialysis nurses and physicians, with focus on patient clinical characteristics: A comparative study2023In: Hemodialysis International, ISSN 1492-7535, E-ISSN 1542-4758, Vol. 27, no 4, p. 454-464Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics.

    METHODS: This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics.

    FINDINGS: Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (κ = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (κ = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ.

    DISCUSSION: Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.

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  • 32.
    Wallin, Jeanette
    et al.
    Sophiahemmet University.
    Jacobsson, Stefan H
    Axelsson, Lena
    Sophiahemmet University.
    Lindberg, Jenny
    Persson, Carina I
    Stenberg, Jenny
    Wennman-Larsen, Agneta
    Sophiahemmet University.
    Discrepancy of clinical appraisal between hemodialysis nurses' and physicians' responses to the surprise question2023Conference paper (Other academic)
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