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  • 1.
    Albinsson, L.
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Strang, P.
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
    Staff opinions about the leadership and organisation of municipal dementia care2002In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 10, no 5, p. 313-322Article, review/survey (Refereed)
    Abstract [en]

    The present study describes the opinions of experienced staff providing direct care to patients with dementia in municipal units in Sweden. The focus is mainly on leadership and other organisational factors. A purposeful sample of 31 staff members employed in municipal dementia care in both urban and rural areas in mid-Sweden were selected. Data were collected within a qualitative paradigm using semi-structured interviews which were tape-recorded and analysed using a modified phenomenographical approach. The nearly unanimous opinions of the interviewees indicated that there was a great lack of daily leadership in the units. Thus, few units had clearly formulated goals and few had regular care planning for their residents. Poorly developed teamwork was reported in the care of people with dementia especially regarding doctors, whose visits to the unit were too infrequent and too short, and did not include a direct exchange of information with other staff. In addition, little or no staff education and guidance/supervision was provided on a regular basis. In conclusion, without any unreasonable increase in cost, measures such as introducing clear leadership at the care unit level, concentrating on multi-professional teamwork, and providing education and guidance/supervision to the staff would probably result in better care for patients with dementia and their families.

  • 2.
    Ekdahl, Anne
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Andersson, Lars
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    They do what they think is the best for me: Frail elderly patients' preferences for participation in their care during hospitalization.2010In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 80, no 2, p. 233-240Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To deepen the knowledge of frail elderly patients' preferences for participation in medical decision making during hospitalization. METHODS: Qualitative study using content analysis of semi-structured interviews.

    RESULTS: Patient participation to frail elderly means information, not the wish to take part in decisions about their medical treatments. They view the hospital care system as an institution of power with which they cannot argue. Participation is complicated by barriers such as the numerous persons involved in their care who do not know them and their preferences, differing treatment strategies among doctors, fast patient turnover in hospitals, stressed personnel and linguistic problems due to doctors not always speaking the patient's own language.

    CONCLUSION: The results of the study show that, to frail elderly patients, participation in medical decision making is primarily a question of good communication and information, not participation in decisions about medical treatments.

    PRACTICE IMPLICATIONS: More time should be given to thorough information and as few people as possible should be involved in the care of frail elderly. Linguistic problems should be identified to make it possible to take the necessary precautions to prevent negative impact on patient participation.

  • 3.
    Ekdahl, Anne W
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Andersson, Lars
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Wiréhn, Ann-Britt
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised?: A cross-sectional survey2011In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 11, no 46Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Medical decision making has long been in focus, but little is known of the preferences and conditions for elderly people with co-morbidities to participate in medical decision making. The main objective of the present study was to investigate the preferred and the actual degree of control, i.e. the role elderly people with co-morbidities wish to assume and actually had with regard to information and participation in medical decision making during their last stay in hospital.This study was a cross-sectional survey including three Swedish hospitals with acute admittance. The participants were patients aged 75 years and above with three or more diagnoses according to the International Classification of Diseases (ICD-10) and three or more hospitalisations during the last year.

    METHODS:

    We used a questionnaire combined with a telephone interview, using the Control Preference Scale to measure each participant's preferred and actual role in medical decision making during their last stay in hospital. Additional questions were asked about barriers to participation in decision making and preferred information seeking role. The results are presented with descriptive statistics with kappa weights.

    RESULTS:

    Of the 297 elderly patients identified, 52.5% responded (n = 156, 46.5% male). Mean age was 83.1 years. Of the respondents, 42 of 153 patients said that they were not asked for their opinion (i.e. no shared decision making). Among the other 111 patients, 49 had their exact preferred level of participation, 37 had less participation than they would have preferred, and 23 had more responsibility than they would have preferred. Kappa statistics showed a moderate agreement between preferred and actual role (κw = 0.57; 95% CI: 0.45-0.69). Most patients wanted to be given more information without having to ask. There was no correlation between age, gender, or education and preferred role. 35% of the patients agreed that they experienced some of the various barriers to decision making that they were asked about: 1) the severity of their illness, 2) doctors with different treatment strategies, 3) difficulty understanding the medical information, and 4) difficulty understanding doctors who did not speak the patient's own language.

    CONCLUSIONS:

    Physicians are not fully responsive to patient preferences regarding either the degree of communication or the patient's participation in decision making. Barriers to participation can be a problem, and should be taken into account more often when dealing with hospitalised elderly people.

  • 4.
    Eriksson, Helene
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Andersson, Gisela
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Olsson, Louise
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden2014In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 46, no 3, p. 162-170Article in journal (Refereed)
    Abstract [en]

    In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on nondecisions about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had problems holding to the decision. The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was communication barriers, a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.

  • 5.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Språkets och samtalets betydelse2013In: Palliativ vård: begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkanson, Lund: Studentlitteratur, 2013, 1, p. 431-439Chapter in book (Other (popular science, discussion, etc.))
  • 6.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Hajradinovic, Yvonne
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Sundberg, Lars
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Axmacher Jonsson, Monica
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Prolonged grievers: A qualitative evaluation of a support group intervention2014In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 12, no 4, p. 299-308Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.

    Methods: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.

    Results: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.

    Significance of results: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.

  • 7.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Vrinnevi Hospital, Sweden .
    Heedman, Per-Anders
    Vrinnevi Hospital, Sweden .
    Astradsson, Eva
    Vrinnevi Hospital, Sweden .
    Jakobsson, Maria
    Vrinnevi Hospital, Sweden .
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Vrinnevi Hospital, Sweden .
    Does a Half-Day Course about Palliative Care Matter? A Quantitative and Qualitative Evaluation among Health Care Practitioners2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 5, p. 496-501Article in journal (Refereed)
    Abstract [en]

    Background: To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals. less thanbrgreater than less thanbrgreater thanObjectives: The aims of this study were to quantitatively and qualitatively explore professionals experience of the usefulness and importance of such a course. less thanbrgreater than less thanbrgreater thanDesign: An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times. less thanbrgreater than less thanbrgreater thanSetting and Subjects: Data was collected in Sweden through structured and open-ended questions (n = 355) and in focus group discussions (n = 40). less thanbrgreater than less thanbrgreater thanResults: The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered. less thanbrgreater than less thanbrgreater thanConclusion: The course was appreciated and useful in the professionals work, but it also created problems.

  • 8.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.
    Lindholm, Ann
    Stockholms sjukhem.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Experiences of truth disclosure in terminally ill cancer patients in palliative home care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 2, p. 173-180Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.

    Method: We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.

    Results: Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.

    Significance of results: Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.

  • 9.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet, FOUU, Stockholms Sjukhem, Stockholm .
    Carlsson, Maria
    Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden.
    Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment2002In: Palliative Medicine, ISSN 0269-2163, Vol. 16, no 4, p. 323-330Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cancer patients' interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received.

    METHODS: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach.

    RESULTS: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death.

    CONCLUSION: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.

  • 10.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Carlsson, Maria
    Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden.
    Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment2000In: Acta Oncologica, ISSN 0001-6381, Vol. 39, no 8, p. 919-925Article in journal (Refereed)
    Abstract [en]

    The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients' own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients' previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.

  • 11.
    Gunhardsson, Inger
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Svensson, Anna
    Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Berterö, Carina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medicine and Health Sciences, Nursing Science.
    Documentation in palliative care: Nursing documentation in a palliative care unit - A pilot study2008In: AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE, ISSN 1049-9091, Vol. 25, no 1, p. 45-51Article in journal (Refereed)
    Abstract [en]

    Palliative care seeks to enhance quality of life in the face of death by addressing the physical, psychological, social, and spiritual needs of patients with advanced disease. The purpose of this paper is to explore whether palliative patients needs, nursing actions, and evaluation can be identified in the nursing documentation. Data consisted of reviews of patients' case records in a palliative care unit. Data were analyzed using content analysis and counting frequency of keywords used from the Well-being Integrity Prevention and Safety (VIPS) model, followed by an inductive analysis of the case record documentation aiming to identify palliative care components. The result shows that the documentation revealed physical care, especially pain, more frequently than other needs. Nursing documentation focuses on identification more than on nursing actions and evaluation.

  • 12.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Strömberg, Anna
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Mårtensson, Jan
    Hälsohögskolan, Jönköping, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Communicating prognosis and end-of-life care to heart failure patients: a survey of heart failure nurses' perspectives2014In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 13, no 2, p. 152-161Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.

    AIMS:

    This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.

    METHODS:

    A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.

    RESULTS:

    In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.

    CONCLUSION:

    Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.

  • 13.
    Karlsson, Marit
    et al.
    Karolinska institutet.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institute, Stockholm.
    Correction: Dying with dignity according to Swedish medical students (vol 14, pg 334, 2006)2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 7, p. 1065-1065Article in journal (Refereed)
    Abstract [en]

    n/a

  • 14.
    Karlsson, Marit
    et al.
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, LAH Linköping. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Dying cancer patients' own opinions on euthanasia: An expression of autonomy? A qualitative study.2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 1, p. 34-42Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. METHOD: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. RESULTS: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. CONCLUSIONS: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.

  • 15.
    Karlsson, Marit
    et al.
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, LAH Linköping. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Suffering and euthanasia: a qualitative study of dying cancer patients' perspectives.2012In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 20, no 5, p. 1065-1071Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Although intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients' own interpretations and conclusions of suffering in relation to euthanasia. METHODS: Sixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories. RESULTS: The analysis demonstrated patients' different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering. CONCLUSIONS: Dying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.

  • 16.
    Krevers, Barbro
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    The instrument Sense of Security in Care - Patients Evaluation: its development and presentation2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 8, p. 914-920Article in journal (Refereed)
    Abstract [en]

    ObjectiveThe aim of this paper is to report the development, construction, and psychometric properties of the new instrument Sense of Security in Care - Patients Evaluation (SEC-P) in palliative home care. MethodsThe preliminary instrument was based on a review of the literature and an analysis of qualitative interviews with patients about their sense of security. To test the instrument, 161 patients (58% women) in palliative home care were recruited and participated in a structured interview based on a comprehensive questionnaire (response rate 73%). We used principal component analysis to identify subscales and tested the construction in correlation with other scales and questions representing concepts that we expected to be related to sense of security in care. ResultsThe principal component analysis resulted in three subscales: Care Interaction, Identity, and Mastery, built on a total of 15 items. The component solution had an explained variance of 55%. Internal consistency of the subscales ranged from 0.84 to 0.69. Inter-scale correlations varied between 0.40 and 0.59. The scales were associated to varying degrees with the quality of the care process, perceived health, quality of life, stress, and general sense of security. ConclusionsThe developed SEC-P provides a three-component assessment of palliative home care settings using valid and reliable scales. The scales were associated with other concepts in ways that were expected. The SEC-P is a manageable means of assessment that can be used to improve quality of care and in research focusing on patients sense of security in care.

  • 17.
    Linderholm, Märit
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, East County Primary Health Care.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    A desire to be seen:: family caregivers' experiences of their caring role in palliative home care2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 1, p. 28-36Article in journal (Refereed)
    Abstract [en]

    Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

  • 18.
    Lundstrom, Staffan
    et al.
    Palliative Care Services, Stockholms Sjukhem Foundation and Department of Oncology and Pathology, Karolinska Institute, Stockholm.
    Furst, C J
    Palliative Care Services, Stockholms Sjukhem Foundation and Department of Oncology and Pathology, Karolinska Institute, Stockholm.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Palliative Care Services, Stockholms Sjukhem Foundation, Stockholm, and Department of Oncology and Pathology, Karolinska Institute, Stockholm .
    The existential impact of starting corticosteroid treatment as symptom control in advanced metastatic cancer2009In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 23, no 2, p. 165-170Article in journal (Refereed)
    Abstract [en]

    Treatment with corticosteroids often results in increased appetite, reduced nausea and improved well-being in patients with advanced metastatic cancer. Therefore, we have studied the existential impact of starting corticosteroid treatment as symptom control in this patient group using qualitative content analysis with both a descriptive and an interpretative focus. Ten patients were interviewed before and after 1 week of treatment with 4 mg betamethasone. Prior to treatment, patients reported distressing symptoms, deterioration and diminished autonomy, symbolising threat and death. Corticosteroid treatment produced symptom relief in the majority of the patients. They reported enhanced physical abilities and experienced feelings of a more normalized life and strengthened autonomy, symbolising health and hope. This transfer from threat to hope has important existential consequences in end-of-life care and should be addressed when communicating goals of treatment and care with the patient and family.

  • 19.
    Martinsson, Lisa
    et al.
    Umea University.
    Heedman, Per-Anders
    Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Lundstrom, Staffan
    Stockholms Sjukhem Fdn.
    Fransson, Greger
    Linköping University, Department of Biomedical Engineering. Linköping University, The Institute of Technology.
    Axelsson, Bertil
    Umea University.
    Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care2011In: ACTA ONCOLOGICA, ISSN 0284-186X, Vol. 50, no 5, p. 642-647Article in journal (Refereed)
    Abstract [en]

    Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end of life questionnaire (ELQ), which is validated in this study. Material and methods. This study included 169 consecutive patients who had died at a palliative unit. That unit had developed a computerized end of life medical record module that enabled a comparison between reported data and medical records, illustrating the validity of the registry questionnaire. The paper versions of the ELQs filled in at the unit were also inspected to determine the extent of registration mistakes when completing the web questionnaire. Results. Data from the medical records and data from the ELQs reported to the SRPC showed a congruity of 22 to 100%. A working limit of acceptable congruity was set to 80%. Eight questions fell below that line. Some of these differences were caused by systematic errors. The paper versions filled in at the unit and the data from the ELQs reported to the SRPC had a congruity of between 96% and 100%, with the exception of one question about pain evaluation, which had 91% congruity. Discussion. The results in this study will be used to improve and further develop the register. Some questions need to be more specific to promote more valid registrations. Consensus on quality issues in end-of-life care would simplify the work of writing and answering the questionnaire. It is desirable to perform a similar study at hospital wards that do not specialize in palliative care; however, the anticipated lack of palliative documentation could make such a study difficult to perform.

  • 20.
    Mazya, A. L.
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping. Danderyd Hospital, Sweden .
    Eckerblad, Jeanette
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Vrinnevi Hospital, Sweden .
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Westöö, A.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Ekdahl, Anne
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    The Ambulatory Geriatric Assessment - a Frailty Intervention Trial (AGe-FIT) - A randomised controlled trial aimed to prevent hospital readmissions and functional deterioration in high risk older adults: A study protocol2013In: European Geriatric Medicine, ISSN 1878-7649, E-ISSN 1878-7657, Vol. 4, no 4, p. 242-247Article in journal (Refereed)
    Abstract [en]

    Background

    Care of old people with multimorbidity living at home is often fragmented with lack of coordination and information exchange between health care professionals, the elderly and their relatives. This paper describes the protocol of a randomised, controlled study, which aims to compare the efficacy of caring for older people with multimorbidity and three or more hospital admissions in the previous year at a geriatric ambulatory department based on Comprehensive Geriatric Assessment (CGA) versus usual care.

    Participants and methods

    A total of 400 community-dwelling old people with multimorbidity who are living in the city of Norrköping (Sweden) and one of their relatives are recruited for this trial and randomized to an intervention and a control group. Participants in the intervention group receive interdisciplinary care after a CGA at an Ambulatory Geriatric Unit with easy accessibility during working hours in addition to usual care. The control group receives usual care provided by the primary care or hospital.

    Outcomes

    The primary outcome is number of hospitalisation, the secondary outcomes are health-related outcomes including measures of frailty, cognition, symptom burden, feeling of security, quality of life of participants and relatives and as well as costs for health and social care. Participants will be followed for 2 years.

    Discussion

    This study will contribute to evidence of the effect of two different care models. The study has the potential to change care for older people with multimorbidity.

  • 21.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Appelquist, Gudrun
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland.
    Hagelin, Eva
    Östergötlands Läns Landsting, Local Health Care Services in West Östergötland.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Olsson, Eva-Carin
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Nursing Science.
    Olsson, Maria
    Northern County of Kalmar.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    "A rewarding conclusion of the relationship": staff members' perspectives on providing bereavement follow-up2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 1, p. 37-48Article in journal (Refereed)
    Abstract [en]

    GOALS OF WORK: Staff members in palliative home care play an important role in supporting bereaved family members. The aim of this study was to explore staff members' perspectives on providing such support.

    MATERIAL AND METHODS: Staff members in six units responded (n = 120; response rate 58%) to a postal questionnaire with Likert-type and open-ended questions. The responses were analyzed using statistics and manifest content analysis.

    MAIN RESULTS: None of the respondents stated that bereavement follow-up was "most often difficult," 23% "most often rather difficult," 52.5% "most often rather easy," and 12.5% "most often easy." Apart from a tendency for age to be linked to perceived difficulty, there were no apparent patterns. Bereavement follow-up was a positive opportunity to support the family member's coping with their bereavement and to get feedback on the palliative care provided. Critical aspects concerned the question of whose needs actually were being met at bereavement follow-up, i.e., the staff members' needs for getting feedback on the care provided versus the risk of burdening the family members' by reminding them of the deceased's dying trajectory. Aspects that negatively influenced the staff members' experiences were complex and related, e.g., to the family member's dissatisfaction with the care provided, to the staff member's perceived lack of competence, and to the staff member's relationship to the family member.

    CONCLUSIONS: Bereavement follow-up was perceived as a rewarding conclusion to the relationship with the family member. The findings suggest that meaning-based coping might be an appropriate framework when understanding staff members' experiences with providing bereavement follow-up.

  • 22.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Nilsson, Eva-Carin
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Niskala, Birgitta
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Primary Health Care in Central County.
    Olsson, Maria
    Northern County of Kalmar, Oskarshamn, Sweden.
    Wahlberg, Rakel
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Patients Sense of Security During Palliative Care-What Are the Influencing Factors?2014In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 48, no 1, p. 45-55Article in journal (Refereed)
    Abstract [en]

    CONTEXT:

    Having a sense of security is vitally important to patients who have a limited life expectancy.

    OBJECTIVES:

    We sought to identify the factors associated with patients' sense of security during the palliative care period.

    METHODS:

    We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link).

    RESULTS:

    Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model.

    CONCLUSION:

    These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.

  • 23.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm.
    Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective.2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 251-262Article in journal (Refereed)
    Abstract [en]

    Objective:Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.Method:Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.Results:Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.Significance of results:The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

  • 24.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Wåhlberg, Rakel
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Olsson, Eva-Carin
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Olsson, Maria
    PRIVO/Palliative Consulting Team, Northern County of Kalmar, Oskarshamn.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    What is a “secure base” when death is approaching? A study applying attachment theory to adult patients’ and family members’ experiences of palliative home care2012In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 21, no 8, p. 886-895Article in journal (Refereed)
    Abstract [en]

    Objective

    Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a ‘secure base’ (a central concept within the theory).

    Methods

    Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis.

    Results

    Informants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person.

    Conclusions

    Important aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.

  • 25.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Wåhlberg, Rakel
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Patients' sense of support within the family in the palliative care context: what are the influencing factors?2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 12, p. 1340-1349Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Mutual support within the family is of great importance to maintain its proper functioning. The study aim, which was based on a family system approach, was to evaluate which variables are associated with patients' sense of support within the family in the palliative care context.

    METHODS: We recruited 174 adult patients (65% of those eligible) from six palliative home care units, who had non-curable disease with an expected short-term survival, such as disseminated cancer or non-malignant diagnosis. The relationship between the endpoint and individual factors were evaluated in a stepwise model-building procedure using generalised linear model (ordinal multinomial distribution and logit link).

    RESULTS: The respondents' ratings of their sense of support within the family ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation 1.06). Patients who less frequently sensed family support experienced more often stress, worry about their private economy, lower self-efficacy, lower sense of security with palliative care provided (lower ratings on subscales of care interaction, mastery and prevailed own identity), more often anxiety, less often perceived general well-being for closest ones and less often sense of support from more distant family members. In the model building, three variables were selected to predict the patients' sense of support within the family.

    CONCLUSIONS: The dying patients' sense of support within the family related to several factors, and these may help the palliative care teams to identify patients at risk and to alleviate suffering, for example, through supporting the closest family members.

  • 26.
    Olsson, Louise
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Östlund, Gunnel
    Linköping University, Department of Social and Welfare Studies, Society, Diversity, Identity. Linköping University, Faculty of Arts and Sciences.
    Jeppsson Grassman, Eva
    Linköping University, Department of Social and Welfare Studies, Society, Diversity, Identity. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet.
    Maintaining hope when close to death: insight from cancer patients in palliative home care2010In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 16, no 12, p. 607-612Article in journal (Refereed)
    Abstract [en]

    This article reports the social and psychological processes that 11 cancer patients receiving palliative home care used to keep their hope alive. Method: The patients described their ways of dealing with hope in interviews and diaries, and it was from these accounts that the processes were extracted, using a grounded theory methodology. Results: Two main processes emerged: maintaining life and preparing for death. When the patients focused on maintaining life, they tried to preserve its meaning and to communicate with others about life and death. They found it helpful to shift their focus and to involve fellow 'travellers' in their journey. To prepare for death was to take responsibility for the future and to see possibilities of living on even after death. Conclusion: This paper revealed two parallel and interdependent processes used by patients in the palliative care phase to maintain hope and respond to living close to death.

  • 27.
    Olsson, Louise
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Östlund, Gunnel
    Linköping University, Department of Social and Welfare Studies, Society, Diversity, Identity. Linköping University, Faculty of Arts and Sciences.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms sjukhem, Mariebergsgatan 22, SE 112 35 Stockholm, Sweden.
    Jeppsson Grassman, Eva
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    The Glimmering Embers: Experiences of hope among cancer patients in palliative home care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 1, p. 43-54Article in journal (Refereed)
    Abstract [en]

    The experience of hope among cancer patients in palliative care is important knowledge for health care providers, but research is sparse. The aim of this paper was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during six weeks throughout the last phase of their life and to assess their symptoms and hope status during six weeks throughout the last phase of their lives.

    Eleven adult patients with cancer participated in twenty interviews and completed seven diaries. The participants were recruited from two palliative care units in South-East of Sweden. The methods used were Grounded Theory (GT), and analysis was based on the constant comparative method.

    The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope”, including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out. The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

  • 28.
    Ring Jacobsson, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Hallert, Claes
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.
    Coeliac disease: Women’s experiences in everyday life2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 23-24, p. 3442-3450Article in journal (Refereed)
    Abstract [en]

    Aim. This paper is a report of a descriptive study on what life is like as a woman living with coeliac disease (CD).

    Background. The therapy for CD is a gluten-free diet (GFD), and if sufferers keep strictly to this it is suggested that they will stay well. However, previous studies point out that people who are treated for CD, particularly women, experience various kinds of inconvenience in relation to having CD and to being treated with GFD.

    Methods. A phenomenological approach as devised by Giorgi was used. Taperecorded qualitative interviews with a total of 15 women who were being treated for CD were conducted in 2008 in Sweden.

    Results. The results demonstrated that CD can influence women’s lives in different ways. The general structure of being a woman with coeliac disease was described as a striving towards a normalised lifeworld. Three  conditions necessary to achieve a normalised life were described, namely being secure, being in control and being seen and included.

    Conclusion. The results of this study can help caregivers, and others, to understand and develop support for women with this condition.

  • 29.
    Ring Jacobsson, Lisa
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Hjelm, Katarina
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Friedrichsen, Maria
    Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.2016In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 9-10, p. 1229-1237Article in journal (Refereed)
    Abstract [en]

    Aims and Objectives

    To explore the lived experiences of women with coeliac disease after attending a patient education programme, to gain a broader perspective of its influence.

    Background

    Adults, particularly women, with coeliac disease report suffering from poor well-being and reduced quality of life in terms of health. Patient education programmes might support and encourage them in the search for possible improvements in lifestyle and in their approach to the disease.

    Design

    A qualitative phenomenological study.

    Methods

    Personal narrative interviews with 14 women suffering from coeliac disease who had participated in an educational programme. Data analysis in accordance with Giorgi was performed.

    Results

    The essential structure of women's lived experiences following their participation in the patient education programme was found to be an interaction with others with the same disease, which left the women feeling individually strengthened. The interaction enabled the participants to acquire a broader view of their life with coeliac disease. As a result, this realigned their sense of self in relation to their own disease.

    Conclusion

    In coping with coeliac disease, it seems that women need interaction with others with the disease to experience togetherness within a group, get the opportunity to compare themselves with others and to exchange knowledge. The interaction appears to result in that women acquire an overview of life with the disease, develop a greater confidence and dare to try new things in life.

    Relevance to clinical practice

    When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.

  • 30.
    Rydé, Kerstin
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm.
    Crying: A force to balance emotions among cancer patients in palliative home care2007In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 5, no 1, p. 51-59Article in journal (Refereed)
    Abstract [en]

    Objective: Crying is a common but seldom studied phenomenon in palliative care. The aim of this study was to explore the significance of patients crying in a palliative care context.

    Methods: Tape-recorded interviews with 14 cancer patients in palliative home care were carried out. To gain deeper understanding, a hermeneutic analysis and interpretation was used.

    Results: Crying was described in different dimensions: (1) intense and despondent crying as a way of ventilating urgent needs, (2) gentle, sorrowful crying as a conscious release of emotions, and (3) quiet, tearless crying as a protection strategy. Crying seems to be an expression for an inner emotional force, provoked by different factors, which cause changes in the present balance. To cry openly but also to cry on the inside meant being able to achieve or maintain balance. Crying may be something useful, which could create release and help reduce tension, but it may also have a negative impact as it consumes energy and creates feelings of shame.

    Significance of results: Professionals need to understand the different levels of crying. In such situations sometimes comforting the patient may not be the best solution, as some may need privacy.

  • 31.
    Sund-Levander, Martha
    et al.
    Hoegland Hospital, Eksjo, Sweden .
    Tingström, Pia
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, LAH Linköping. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Signs and symptoms of infection in nursing-home residents: perceptions of nursing assistants in JOURNAL OF CLINICAL NURSING, vol 19, issue , pp 101-1012010In: JOURNAL OF CLINICAL NURSING, Blackwell Publishing Ltd , 2010, Vol. 19, p. 101-101Conference paper (Refereed)
    Abstract [en]

    n/a

  • 32.
    Tingström, Pia
    et al.
    Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, LAH Linköping. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care.
    Sund-Levander, Martha
    Hoegland Hospital.
    Early nonspecific signs and symptoms of infection in institutionalized elderly persons: perceptions of nursing assistants2010In: SCANDINAVIAN JOURNAL OF CARING SCIENCES, ISSN 0283-9318, Vol. 24, no 1, p. 24-31Article in journal (Refereed)
    Abstract [en]

    Aim: To explore early nonspecific signs and symptoms of infection in elderly institutionalized individuals as described by nursing assistants. Background: Nonspecific signs and symptoms and lack of specific ones are common in connection with infection in institutionalized elderly persons and contribute to a delayed diagnosis and treatment. In clinical care, the nurse makes notes on the individual status of the patient on a daily basis and decides whether to contact the physician or not. However, in Sweden nursing assistants provide most of the daily care and therefore have many opportunities to observe subtle changes that may be early signs of infection. Method: Data were collected in 2006 from focus interviews with 21 female nursing assistants. The interviews were verbatim transcripted and analysed with qualitative content analysis for manifest content with no preconceived categories. Findings: Nursing assistants descriptions of nonspecific signs and symptoms of infection comprised two exclusive categories. Is not as usual described general signs and symptoms of discomfort related to possible infection, such as discomfort, unrestrained behaviour, aggressiveness, restlessness, confusion, tiredness and feebleness, and decreased eating. Seems to be ill was more distinctly related to signs and symptoms of established infection in general terms of fever and pain or more specifically related to pneumonia, urinary tract infection, skin infection, cold and eye infection. Conclusion: Nursing assistants have a keen observational ability to detect early signs that might help to confirm suspected infections in elderly nursing home residents early on. Whether or not the cited categories are actual early signs and symptoms of infectious disease needs to be further investigated.

  • 33.
    Wissendorff Ekdahl, Anne
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Andersson, Lars
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Too complex and time-consuming to fit in! Physicians' experiences of elderly patients and their participation in medical decision making: a grounded theory study2012In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 2, no 3Article in journal (Refereed)
    Abstract [en]

    Objective To explore physicians' thoughts and considerations of participation in medical decision making by hospitalised elderly patients.

    Design A qualitative study using focus group interviews with physicians interpreted with grounded theory and completed with a questionnaire.

    Setting and participants The setting was three different hospitals in two counties in Sweden. Five focus groups were conducted with physicians (n=30) in medical departments, with experience of care of elderly patients.

    Results Physicians expressed frustration at not being able to give good care to elderly patients with multimorbidity, including letting them participate in medical decision making. Two main categories were found: ‘being challenged’ by this patient group and  ‘being a small part of the healthcare production machine’. Both categories were explained by the core category ‘lacking in time’. The reasons for the feeling of ‘being challenged’ were explained by the subcategories ‘having a feeling of incompetence’, ‘having to take relatives into consideration’ and ‘having to take cognitive decline into account’. The reasons for the feeling of ‘being a small part of the healthcare production machine’ were explained by the subcategories ‘at the mercy of routines' and ‘inadequate remuneration system’, both of which do not favour elderly patients with multimorbidity.

    Conclusions Physicians find that elderly patients with multimorbidity lead to frustration by giving them a feeling of professional inadequacy, as they are unable to prioritise this common and rapidly growing patient group and enable them to participate in medical decision making. The reason for this feeling is explained by lack of time, competence, holistic view, appropriate routines and proper remuneration systems for treating these patients.

  • 34.
    Wissendorff Ekdahl, Anne
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Linderholm, Märit
    Valdemarsviks Primary Care Center, 615 30 Valdemarsvik, County Council of Eastern Gotland, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    Andersson, Lars
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    ‘Are decisions about dischargeof elderly hospital patients mainlyabout freeing blocked beds?’: A qualitative observational study2012In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 2, no 6, p. 1-9Article in journal (Refereed)
    Abstract [en]

    Objective: To explore the interactions concerning thefrail and elderly patients having to do with dischargefrom acute hospital wards and their participation inmedical decision-making. The views of the patients andthe medical staff were both investigated.

    Design: A qualitative observational and interviewstudy using the grounded theory.

    Setting and participants: The setting was threehospitals in rural and urban areas of two counties inSweden of which one was a teaching hospital. The datacomprised observations, healthcare staff interviews andpatient interviews. The selected patients were all aboutto be informed that they were going to be discharged.

    Results: The patients were seldom invited toparticipate in the decision-making regarding discharge.Generally, most communications regarding dischargewere between the doctor and the nurse, after which thepatient was simply informed about the decision. It wasobserved that the discharge information was oftengiven in an indirect way as if other, albeit absent,people were responsible for the decision. Interviewswith the healthcare staff revealed their preoccupationwith the need to free up beds: ‘thinking aboutdischarge planning all the time’ was the core category.This focus not only failed to fulfil the complex needs ofelderly patients, it also generated feelings of frustrationand guilt in the staff, and made the patients feelunwelcome.

    Conclusions: Frail elderly patients often did notparticipate in the medical decision-making regardingtheir discharge from hospital. The staff was highlyfocused on patients getting rapidly discharged, whichmade it difficult to fulfil the complex needs of thesepatients.

1 - 34 of 34
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