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  • 1.
    Christina, Snöbohm
    et al.
    KI, sjukgymnastik.
    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.
    Heiwe, Sussanne
    KI, sjukgymnastik.
    Experiencing one's body after a diagnosis of cancer-a phenomenological study of young adults.2010In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 19, no 8, p. 863-869Article in journal (Refereed)
    Abstract [en]

    Young adults with cancer are still in the process of shaping their lives and are therefore at a vulnerable stage. Altered body image may change how patients cope with the disease and impact rehabilitation capacity.Objective: To describe the essence of how young adults with cancer experience their bodies.Methods: Interviews (12 informants), transcribed verbatim. Analysis: Giorgi's phenomenological method.Results: Identified themes: experience of 'physical body change', 'discomfort', 'the body at the moment without reflecting on the disease and treatment', 'body image' and 'grasping the illness'. Essences: The body as the bearer of life; conflict between age and disease; manifest changes in appearance, physically and mentally; the body no longer a whole; the body as influenceable and able to recover and heal.Conclusions: These patients undergo physical and mental changes that affect their self-image and health-related life quality. Thus, future studies need to explore interventions that may enhance the individualś perception of their body.

  • 2.
    Cronfalk, Berit
    et al.
    Inst. onk-pat. Karolinska Inst.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Strang, Peter
    Ints.för onkologi-patologi Karolinska institutet.
    A one-day education in soft tissue massage: Experiences and opinions as evaluated by nursing staff in palliative care2008In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 2, p. 141-148Article in journal (Refereed)
    Abstract [en]

    Objective: Increasing awareness of well-being aspects of physical touch has spurred the appreciation for soft tissue massage (STM) as part of palliative care. Educational programs are available but with no specific focus on utilization for this kind of care. The aim was to study the feasibility of a 1-day course in STM in clarifying nursing staff's experiences and opinions, but also to shed light on their motivation and ability to employ STM in the care of dying cancer patients. Method: In all, 135 nursing staff participated. The course consisted of theory and hands-on training (hand-foot-, back massage). Focus-groups with 30/135 randomly chosen participants were conducted 4 weeks after the intervention. This study engaged a qualitative approach using content analysis. Results: The overall opinion of the 1-day course was positive. The majority experienced the contents of the course to be adequate and sufficient for clinical care. They emphasized the pedagogical expertise as valuable for the learning process. The majority of nurses shared the opinion that their extended knowledge clarified their attitudes on STM as a complement in palliative care. Still, a few found it to be too basic and/or intimate. Three categories emerged during the analysis: experiences of and attitudes toward the education, experiences of implementing the skills in every-day care situations, and attitudes to the physical body in nursing care. Significance of results: The approach to learning and the pedagogical skills of the teacher proved to be of importance for how new knowledge was perceived among nurses. The findings may encourage hospital organizations to introduce short courses in STM as an alternative to more extensive education. Copyright © 2008 Cambridge University Press 2008.

  • 3.
    Cronfalk, B.S.
    et al.
    Department of Oncology–Pathology, Karolinska Institutet, Stockholm.
    Strang, P.
    Department of Oncology–Pathology, Karolinska Institutet, Stockholm.
    Ternestedt, B.-M.
    Department of Palliative Care Research, Ersta Sköndal University College, 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, Department of Geriatrics and Hospital based homecare VHN.
    The existential experiences of receiving soft tissue massage in palliative home care - An intervention2009In: Supportive Care in Cancer, ISSN 0941-4355, Vol. 17, no 9, p. 1203-1211Article in journal (Refereed)
    Abstract [en]

    Background: Soft tissue massage is currently used in palliative care for the relief of anxiety and pain. Only few studies have focused on patients deeper experience of receiving the massage. Aim: The purpose of this study was to explore how patients with cancer in palliative home care experienced soft tissue massage. Materials and methods: Twenty-two patients received soft tissue massage (hand or foot) nine times over a period of 2 weeks. Each session lasted for 25 min. Following the last massage session, a qualitative interview was conducted. The analysis was performed using a hermeneutic approach. Findings: Soft tissue massage generated feelings of existential respite with perceptions of being released from illness for a while. Two categories constituted the basis of the experiences: (1) "an experience of thoughtful attention" and (2) "a sensation of complete tranquility" resulting in the overarching theme "A time of existential respite." Conclusion: The patients experienced the massage to give meaning and to be important as it generated feelings of an inner respite. Relevance to clinical practice: Soft tissue massage appears to be an appreciated source of support to dying patients in palliative home care. The method is easy to comprehend and relatively short (25 min) which may imply that it is a suitable complement in nursing care for this patient group.

  • 4.
    Dahlqvist, Jenny
    et al.
    Region Östergötland.
    Ekdahl, Anne
    Lund Hosp, Sweden; KI, Sweden.
    Friedrichsen, Maria
    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.
    Does comprehensive geriatric assessment (CGA) in an outpatient care setting affect the causes of death and the quality of palliative care? A subanalysis of the age-FIT study2019In: European Geriatric Medicine, ISSN 1878-7649, E-ISSN 1878-7657, Vol. 10, no 3, p. 455-462Article in journal (Refereed)
    Abstract [en]

    Key summary pointsAimDoes comprehensive geriatric assessment (CGA) affect the causes of death and the quality of palliative care when patients receive care at the end of life when in an outpatient care setting compared to usual care?FindingsCGA does not affect the causes of death. CGA affects the frequency of referral to specialised palliative care teams, but CGA does not affect the quality of palliative care given to the patients. These effects are measured in outpatient care settings and in comparison with usual care.MessageFurther studies are needed to evaluate the CGA effects on causes of death and palliative care quality in outpatient care settings. AbstractPurposeThe purposes of this study were to retrospectively study whether comprehensive geriatric assessment (CGA) given to community-dwelling old patients with high health care usage has effects regarding: (1) the cause of death and (2) the quality of the provided palliative care when compared to patients without CGA-based care.MethodThis study includes secondary data from a randomised controlled trial (RCT) with 382 participants that took place in the periods 2011-2013. The present study examines all electronical medical records (EMR) from the deceased patients in the original study regarding cause of death [intervention group (IG) N=51/control group (CG) N=66] and quality of palliative care (IG N=33/CG N=41). Descriptive and comparative statistics were produced and the significance level was set at pamp;lt;0.05.ResultsThe causes of death in both groups were dominated by cardiovascular and cerebrovascular diseases with no statistical difference between the groups. Patients in the intervention group had a higher degree of support from specialised palliative care teams than had the control group (p=0.01).ConclusionThe present study in an outpatient context cannot prove any effects of CGA on causes of death. The study shows that CGA in outpatient care means a higher rate of specialised palliative care, but the study cannot show any effects on the palliative quality parameters measured. Further studies with statistical power are needed.

  • 5.
    Drewes, Asbjørn M.
    et al.
    Mech-Sense, Department of Gastroenterology and Hepatology, Aalborg University Hospital, Denmark.
    Munkholm, Pia
    NOH (Nordsjællands Hospital) Gastroenterology, Denmark.
    Simrén, Magnus
    Department of Internal Medicine & Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Breivik, Harald
    Department of Pain Management and Research, Oslo University Hospital and University of Oslo, Norway.
    Kongsgaard, Ulf E.
    Department of Anaesthesiology, Division of Emergencies and Critical Care, Oslo University Hospital, Norway and Medical Faculty, University of Oslo, Norway.
    Hatlebakk, Jan G.
    Department of Clinical Medicine, Haukeland University Hospital, Bergen, Norway.
    Agreus, Lars
    Division of Family Medicine, Karolinska Institute, Stockholm, Sweden.
    Friedrichsen, Maria
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Christrup, Lona L.
    Department of Drug Design and Pharmacology, Faculty of Health Sciences, University of Copenhagen, Denmark.
    Definition, diagnosis and treatment strategies for opioid-induced bowel dysfunction—: Recommendations of the Nordic Working Group2016In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, Vol. 11, p. 111-122Article, review/survey (Refereed)
    Abstract [en]

    Background and aims: Opioid-induced bowel dysfunction (OIBD) is an increasing problem due to the common use of opioids for pain worldwide. It manifests with different symptoms, such as dry mouth,gastro-oesophageal reflux, vomiting, bloating, abdominal pain, anorexia, hard stools, constipation and incomplete evacuation. Opioid-induced constipation (OIC) is one of its many symptoms and probably the most prevalent. The current review describes the pathophysiology, clinical implications, and treatment of OIBD.Methods: The Nordic Working Group was formed to provide input for Scandinavian specialists in multiple, relevant areas. Seven main topics with associated statements were defined. The working plan provided a structured format for systematic reviews and included instructions on how to evaluate the level of evidence according to the GRADE guidelines. The quality of evidence supporting the different statements was rated as high, moderate or low. At a second meeting, the group discussed and voted on each section with recommendations (weak and strong) for the statements.Results: The literature review supported the fact that opioid receptors are expressed throughout the gastrointestinal tract. When blocked by exogenous opioids, there are changes in motility, secretion and absorption of fluids, and sphincter function that are reflected in clinical symptoms. The group supported a recent consensus statement for OIC, which takes into account the change in bowel habits for at least one week rather than focusing on the frequency of bowel movements. Many patients with pain received opioid therapy and concomitant constipation is associated with increased morbidity and utilization of healthcare resources. Opioid treatment for acute postoperative pain will prolong the postoperative ileus.

  • 6.
    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.

  • 7.
    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.

  • 8.
    Erichsén, Eva
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care.
    Hadd Danielsson, Elisabeth
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    A phenomenological study of nurse´s understanding of honesty in palliative care2010In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 17, no 1, p. 39-50Article in journal (Other academic)
    Abstract [en]

    Honesty is essential for the care of seriously ill and dying patients. The current study aimed to describe how

    nurses experience honesty in their work with patients receiving palliative care at home. The interviews in

    this phenomenological study were conducted with 16 nurses working with children and adults in palliative

    home-based care. Three categories emerged from analyses of the interviews: the meaning of honesty, the

    reason for being honest and, finally, moral conflict when dealing with honesty. The essence of these

    descriptions was that honesty is seen as a virtue, a good quality that a nurse should have. The nurses’ ethical

    standpoint was shown in the moral character they show in their work and in their intention to do good. This

    study could help nurses to identify different ways of looking at honesty to promote more consciousness and

    openness in ethical discussions between colleagues and other staff members.

  • 9.
    Erichsén, Eva
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    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.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Constipation in specialized palliative care: factors related to constipation when applying different definitions2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 2, p. 691-698Article in journal (Refereed)
    Abstract [en]

    CONTEXT:

    For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied.

    OBJECTIVES:

    The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation.

    METHODS:

    Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios.

    RESULTS:

    Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease.

    CONCLUSION:

    There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.

  • 10.
    Erichsén, Eva
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, 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. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jaarsma, Tiny
    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. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Constipation in specialized palliative care: prevalence, definition and patient perceived symptom distress2015In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 7, p. 585-592Article in journal (Refereed)
    Abstract [en]

    Context: The prevalence of constipation among patients in palliative care has varied in prior research, from 18-90 %, depending on different study factors.

    Objectives: The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings.

    Methods: Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR).

    Result: The prevalence of constipation varied between 7 – 43 %, depending on the definition used. Two constipation- groups were found: (i) Medical constipation- group (MCG; ≤ 3 defecations/week n=114; 23%); (ii) Perceived constipation- group (PCG; Patients with a perception of being constipated the last two weeks; n= 171; 35%). Three sub-groups emerged: patients with (a) only medical constipation (7 %), (b) only perceived constipation (19 %), and (c) with both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.

    Conclusion: The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three sub-groups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients’ definition has to be further explored and assessed.

  • 11.
    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.

  • 12.
    Eriksson, Helene
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Norrköping, Sweden.
    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. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 2, p. e0147694-, article id 26845149Article in journal (Refereed)
    Abstract [en]

    Background

    Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.

    Objective

    To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.

    Design

    This study is a retrospective, comparative registry study.

    Methods

    A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.

    Results

    Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.

    Conclusions

    The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.

  • 13.
    Frid, Marianne
    et al.
    Karolinska University Hospital.
    Strang, Peter
    Karolinska University Hospital.
    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 Geriatrics and Hospital based homecare VHN.
    Johansson, Karin
    Lund .
    lower limb lymphedema: experiences and perceptions of cancer patients in the late palliative stage2006In: Journal of Palliative Care, ISSN 0825-8597, Vol. 22, no 1Article in journal (Refereed)
  • 14.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Att erhålla besked vid obotbar cancer-patientens uppfattning2012In: Palliativ medicin och vård / [ed] Peter Strang och Barbro Beck-Friis, Stockholm: Liber, 2012, 4, p. 129-135Chapter in book (Other academic)
  • 15.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Commentary: Does a prompt list help patients and caregivers to ask questions about cancer prognosis and care?: in Clayton JM et al. (2007) Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. J Clin Oncol 25: 715–7232007In: Nature Reviews Clinical Oncology, ISSN 1759-4774, E-ISSN 1759-4782, Vol. 4, no 10, p. 563-563Article in journal (Other academic)
    Abstract [en]

    [Abstract not available]

  • 16.
    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.
    Crossing the border: Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase2002Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Information in the transition to the late palliative phase is not a well-studied area, especially not from the perspective of patients and family members. The aim of this thesis was to describe how cancer patients, family members and physicians experience information during the transition from a curative or early palliative phase to a late palliative phase, i.e. when tumour-specific treatment could not be offered. Cancer patients (n=30) admitted to palliative hospital based home care, family members (n=20) of cancer patients, and physicians (n=30) working with cancer patients in different settings were included in order to create a maximum variation sampling.

    Tape-recorded, semi-structured interviews and qualitative, phenomenographic analyses were done in all the studies.

    Patients described the physician as an expert (study I), an important person during this event, despite characterising him/her in different ways ranging from the empathetic professional to the rough and ready expert. Their relationship with the physician was also stressed. Their own resources, i.e. a sense of well being, a sense of security and individual strength, and their previous knowledge, were important components regarding their ability to take part in the communication (study II). Patients interpret words and phrases carefully and can perceive them as forewarnings, as being emotionally trying, and as fortifying and strengthening (study III). The overall message could be interpreted as either focused on quality if life, on treatment or on death and threat.

    Family members wanted to protect the patient during this period and could be very active and prominent in their protective role (study IV). However, other family members described themselves as being in the background more or less involuntarily. Family members also felt that there were expectations regarding their behaviour, either that they should take over in terms of communication, or that they should restrict their participation. When giving information, the physicians had a clear goal - to make the patient understand while being as considerate toward the patient as possible. However, the strategies for reaching this goal differed and included: explaining and convincing, softening the impact and vaguely suggesting, preparing and adapting. Some physicians had a main strategy while others mixed different strategies depending on the context.

    The experience of receiving and providing information about discontinuing tumour specific treatment is like crossing a border, where patients experience the behaviour of the physician and the words they express of great significance. Family members assume the role of protectors. Physicians use different strategies in order to help patients cross the border.

    List of papers
    1. Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information
    Open this publication in new window or tab >>Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information
    2000 (English)In: Supportive Care in Cancer, ISSN 0941-4355, Vol. 8, no 6, p. 472-478Article in journal (Refereed) Published
    Abstract [en]

    In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Six subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.

    Keywords
    Doctor - patient communication, Palliative care, Behaviour, Patient's opinion
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13723 (URN)10.1007/s005200000147 (DOI)
    Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
    2. Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
    Open this publication in new window or tab >>Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
    2000 (English)In: Acta Oncologica, ISSN 0001-6381, Vol. 39, no 8, p. 919-925Article in journal (Refereed) Published
    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.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13724 (URN)10.1080/02841860050215882 (DOI)
    Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
    3. Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
    Open this publication in new window or tab >>Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
    2002 (English)In: Palliative Medicine, ISSN 0269-2163, Vol. 16, no 4, p. 323-330Article in journal (Refereed) Published
    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.

    Keywords
    communication, neoplasms, palliative care, patient perception, phenomenography
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13725 (URN)10.1191/0269216302pm543oa (DOI)
    Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
    4. Receiving bad news- experiences of family members
    Open this publication in new window or tab >>Receiving bad news- experiences of family members
    2001 (English)In: Journal of Palliative Care, ISSN 0825-8597, Vol. 17, no 4, p. 241-247Article in journal (Refereed) Published
    Abstract [en]

    Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context.

    METHODS: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method.

    RESULTS: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role.

    CONCLUSION: This study has revealed possible-explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.

    Place, publisher, year, edition, pages
    Montreal, Canada: Centre for Bioethics, 2001
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13726 (URN)000173319900004 ()
    Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2017-12-13
    5. Doctors' strategies when breaking bad news to terminally ill cancer patients
    Open this publication in new window or tab >>Doctors' strategies when breaking bad news to terminally ill cancer patients
    2003 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, Vol. 6, no 4, p. 565-574Article in journal (Refereed) Published
    Abstract [en]

    Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient's level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient's reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors' goal was to make patients understand, but the strategies differed depending on the context.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-13727 (URN)10.1089/109662103768253678 (DOI)
    Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
  • 17.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Welfare and Care (IVV).
    Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden.2003In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 1, no 3, p. 239-245Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Several studies have concluded that family members in palliative home care want information about the patient's disease. The aim of this study was to describe family members' perceptions of their motivation for receiving information about the patient's disease. METHOD: Semistructured tape-recorded interviews were performed with 20 family members of patients with incurable progressive cancer who were admitted to hospital-based home care in Sweden. Data were analyzed using a qualitative phenomenographic method. RESULTS: Family members justified their informational needs by emphasizing that they needed to understand and confirm what would happen when the disease progressed, to be mentally prepared for the future, to organize their daily life, to be a source of information to others, and that receiving information was a natural right. SIGNIFICANCE OF RESULTS: This study has revealed some explanations as to why family members want information. In clinical practice, it is important that palliative care team members are aware of family members' level of knowledge and their need for information, as this mental preparation is important.

  • 18.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies.
    Sjuksköterskan i den palliativa vården2012Book (Other academic)
  • 19.
    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.))
  • 20.
    Friedrichsen, Maria
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Welfare and Care (IVV).
    Erichsen, Eva
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Welfare and Care (IVV).
    The lived experience of constipation in cancer patients in palliative hospital-based home care.2004In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 10, no 7, p. 321-325Article in journal (Refereed)
    Abstract [en]

    Constipation is a common and well-studied symptom in palliative care. Most previous studies have focused on the frequency and management of constipation. The current study aimed to investigate the lived experience of constipation among cancer patients in palliative hospital-based home care. Eleven cancer patients admitted to a hospital-based home care unit in Sweden who had experienced constipation participated in this study. Semi-structured interviews were conducted and a qualitative, phenomenological approach was used. Three themes emerged: bodily suffering, mental preoccupation and a reminder of death, and avoidance and social isolation. The experience of constipation was described as an extensive complete person-experience that must be prevented. To prevent unnecessary suffering nurses need to be proactive in the assessment of constipation.

  • 21.
    Friedrichsen, Maria
    et al.
    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.
    Hajradinovic, Yvonne
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Milberg, Per
    Linköping University, Department of Physics, Chemistry and Biology, Biology. Linköping University, Faculty of Science & Engineering.
    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.
    Palliative care consultation team on acute wards-an intervention study with pre-post comparisons2017In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, no 2, p. 371-380Article in journal (Refereed)
    Abstract [en]

    There is little evidence regarding primary healthcare team members perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. This study aimed to study whether a PCCT can influence and change primary healthcare team members perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 years intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.

  • 22.
    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.

  • 23.
    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.

  • 24.
    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.

  • 25.
    Friedrichsen, Maria
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Concerns about losing control when breaking bad news to terminally ill patients with cancer: Physicians' perspective2006In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 9, no 3, p. 673-682Article in journal (Refereed)
    Abstract [en]

    Objective: To study and explore problems perceived by physicians when breaking bad news to advanced cancer patients about discontinuing or not offering tumor-specific treatment due to incurable cancer. Design: A qualitative phenomenographic interview study. Setting: The county of Östergötland in Sweden. Participants: Thirty physicians with different demographic characteristics. Results: According to the physicians' answers breaking bad news was perceived as involving a risk of losing control in different ways, regarding emotions, oneself, confidence, professionalism and patient trust. Four different main categories described as problems were identified, perceptions focusing on existential thoughts, relationships, knowledge, and perceptions related to time and environmental disturbances. Conclusion: Physicians perceived that breaking bad news to dying patients with cancer involved a risk of losing control. Existential thoughts and a lack of knowledge contribute to this risk. Theoretical education in existentiality/spirituality and clinical practice in a palliative context may help maintaining control. © Mary Ann Liebert, Inc.

  • 26.
    Friedrichsen, Maria
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies.
    Petersson, Lena-Marie
    Sjuksköterskans roll vid symtomkontroll2012Book (Other academic)
  • 27.
    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.
    Strang, Peter
    Karolinska Institutet, Stockholm.
    Doctors' strategies when breaking bad news to terminally ill cancer patients2003In: Journal of Palliative Medicine, ISSN 1096-6218, Vol. 6, no 4, p. 565-574Article in journal (Refereed)
    Abstract [en]

    Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient's level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient's reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors' goal was to make patients understand, but the strategies differed depending on the context.

  • 28.
    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 Geriatric Medicine in Norrköping.
    Strang, Peter
    Linköping University, Department of Biomedicine and Surgery. Linköping University, Faculty of Health Sciences.
    Carlsson, Maria
    Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden.
    Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information2000In: Supportive Care in Cancer, ISSN 0941-4355, Vol. 8, no 6, p. 472-478Article in journal (Refereed)
    Abstract [en]

    In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Six subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.

  • 29.
    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.

  • 30.
    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.

  • 31.
    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 Geriatric Medicine in Norrköping.
    Strang, Peter
    Linköping University, Department of Biomedicine and Surgery. Linköping University, Faculty of Health Sciences.
    Carlsson, Maria
    Uppsala University, Uppsala, Sweden.
    Receiving bad news- experiences of family members2001In: Journal of Palliative Care, ISSN 0825-8597, Vol. 17, no 4, p. 241-247Article in journal (Refereed)
    Abstract [en]

    Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context.

    METHODS: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method.

    RESULTS: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role.

    CONCLUSION: This study has revealed possible-explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.

  • 32.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Sandgren, Anna
    Linneaus Univ, Sweden.
    Strömberg, Anna
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science.
    Mårtensson, Jan
    Jonkoping Univ, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    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.
    I was told that I would not die from heart failure2018In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 41, p. 41-45Article in journal (Refereed)
    Abstract [en]

    Aim and objectives: To describe patients experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Findings: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. Conclusion: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.

  • 33.
    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.

  • 34.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Strömberg, Anna
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping. Linköping University, Department of Medical and Health Sciences, Division of Nursing Science.
    Friedrichsen, Maria
    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.
    Sandgren, Anna
    Linnaeus Univ, Sweden.
    Martensson, Jan
    Jonkoping Univ, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, article id 85Article in journal (Refereed)
    Abstract [en]

    Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.

  • 35.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    van der Wal, Martje H. L.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. University of Groningen, Netherlands.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Martensson, Jan
    Jonköping University, Sweden.
    Strömberg, Anna
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Patient-Nurse Communication about Prognosis and End-of-Life Care2015In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 10, p. 865-871Article in journal (Refereed)
    Abstract [en]

    Background: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. Objective: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. Methods: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Results: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, pless than0.001, 13% versus 4%, pless than0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Conclusions: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patients situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

  • 36.
    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.

  • 37.
    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.

  • 38.
    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.

  • 39.
    Milberg, Anna
    et al.
    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, Department of Advanced Home Care in Norrköping.
    Friedrichsen, Maria
    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.
    Attachment figures when death is approaching: a study applying attachment theory to adult patients' and family members' experiences during palliative home care2017In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, no 7, p. 2267-2274Article in journal (Refereed)
    Abstract [en]

    Purpose

    Attachment theory is currently receiving much attention in relation to how adults cope with severe illness. The study aims were using the experiences of patients and family members to explore attachment figures (a central concept within the theory) during palliative home care.

    Methods

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

    Results

    Four types of attachment figures were identified: (i) family and friends, (ii) health care practitioners, (iii) pets and (iv) God. Both non-physical and physical contact with the attachment figures facilitated a sense of security. In addition, the patient/family members and their attachment figures were described by some as a “we”, and when one part of the “we” felt insecure, this made the other also feel insecure. The patients’ unstable and progressing illnesses constituted a threat to the patients’ and family members’ sense of security. The availability of the attachment figures made them feel secure, and they could then divert their attention from the patients’ illnesses to other things in everyday life, e.g. socialising with family and friends. Some family members also had to cope with the loss of their own attachment figure, when the patient, who had previously been a source of security for them, was no longer able to offer protection and comfort due to the progression of the illness.

    Conclusion

    Important aspects of attachment figures in the end-of-life context were identified, and their clinical implications will be discussed.

  • 40.
    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.

  • 41.
    Milberg, Anna
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Helander, Lena
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Physiotherapy.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies.
    Rudstrand, Kristina
    Participants' experiences of a support group intervention for family members during ongoing palliative home care2005In: Journal of Palliative Care, ISSN 0825-8597, Vol. 21, no 4, p. 277-284Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups. © 2005 Centre for Bioethics, IRCM.

  • 42.
    Milberg, Anna
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Olsson, Eva-Carin
    LAH, US, Linköping Landstinget i Östergötland.
    Jakobsson, Maria
    Linnéa-enheten, Vrinnevisjukhuset, Norrköping Landstinget i Östergötland.
    Olsson, Maria
    PRIVO Palliativt rådgivningsteam, Lasarettet i Oskarshamn Landstinget i Kalmar län.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Family Members' Perceived Needs for Bereavement Follow-Up2008In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 35, no 1, p. 58-69Article in journal (Refereed)
    Abstract [en]

      

  • 43.
    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.

  • 44.
    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.

  • 45.
    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.

  • 46.
    Palm, Inger
    et al.
    LAH/Linnea-enheten Närsjukvården i Öster.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    The lived experience of closeness in partners of cancer patients in the home care setting2008In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 14Article in journal (Refereed)
  • 47.
    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.
    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.
    Göransson, Anne
    Linköping University, Department of Medical and Health Sciences, Social Medicine and Public Health Science. 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.
    Does a Coeliac School increase psychological well-being in women suffering from coeliac disease, living on a gluten-free diet?2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 5-6, p. 766-775Article in journal (Refereed)
    Abstract [en]

    Aim and objective.  To assess the effects of an active method of patient education on the psychological well-being of women with coeliac disease in remission.

    Background.  Despite remission with a gluten-free diet, adults with coeliac disease and especially women experience a subjective poor health. Self-management education seems to be promising tool to help patients suffering from coeliac disease to cope with their disorder.

    Design.  A randomised controlled trial. Methods.  A total of 106 women, ≥20 years, with confirmed coeliac disease, who had been on a gluten-free diet for a minimum of five years. The intervention group (n = 54) underwent a 10-session educational programme, 'Coeliac School', based on problem-based learning. The controls (n = 52) received information regarding coeliac disease sent home on a regular basis. The primary outcomes were psychological general well-being measured with a validated questionnaire.

    Results.  Participants in the Coeliac School reported a significant improvement in psychological well-being at 10 weeks, whereas the controls given usual care reported a worsening in psychological well-being. After six months, a significant improvement remained for the index of vitality.

    Conclusions.  Patient education increased psychological well-being in women with coeliac disease. There is a need to refine the methods of patient education to make the effects of well-being more pronounced over time.

    Relevance to clinical practice. Patient education using problem-based learning promotes self-management in coeliac disease by improving the well-being of patients who have been struggling with the gluten-free diet for years.

  • 48.
    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.
    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.
    Göransson, Anne
    Linköping University, Department of Medical and Health Sciences, Social Medicine and Public Health Science. 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.
    Impact of an Active Patient Education Programme on GastrointestinalSymptoms in Women with Celiac Disease Following a Gluten-free Diet: Randomized Controlled Trial2012In: Gastroenterology Nursing, ISSN 1042-895X, E-ISSN 1538-9766, Vol. 35, no 3, p. 200-206Article in journal (Refereed)
    Abstract [en]

    Despite living with a gluten-free diet Swedish women with celiac disease report a higher rate of gastrointestinal symptoms than women without the disease. This study was designed to assess the impact of active patient education on gastrointestinal symptoms in women with a gluten-free diet. A total of 106 Swedish women, > 20 years, with celiac disease on a gluten free diet for minimum five years took part in a randomized, controlled trial. The intervention group (n=54) underwent a ten-session educational program “Celiac School”, based on problem-based learning. Controls (n=52) were sent information regarding celiac disease at home. Outcome measure was gastrointestinal symptoms at ten weeks and six months after intervention, assessed with the Gastrointestinal Symptom Rating Scale. After ten weeks “Celiac school” (p=0.013) the participating women reported significant improvements that remained six months later (p=0.029). The controls did not improve significantly. A comparison of the development of scores, from baseline to 10 weeks, could not demonstrate a significant difference in the overall index between the two groups but showed a significant improvement concerning one of its components, namely the index reflecting Abdominal Pain (p= 0.007). Intervention methods should be refined in order to reach an even more pronounced effect.

  • 49.
    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.

  • 50.
    Ring Jacobsson, Lisa
    et al.
    Karolinska Institute, Sweden.
    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, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Hjelm, Katarina
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    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.
    Experiences and own management regarding residual symptoms among people with coeliac disease2017In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 35, p. 53-58Article in journal (Refereed)
    Abstract [en]

    Context: Between 7% and 30% of people with treated coeliac disease suffer from residual symptoms, and there is a knowledge gap about their own management of these symptoms. Aim: To explore experiences and management concerning residual symptoms despite a gluten-free diet in people with coeliac disease. Methods: A qualitative explorative design with semi-structured interviews with 22 adults with coeliac disease in Sweden. Data were analysed using qualitative content analysis. Results: The informants had, at diagnosis, thought that their symptoms would disappear if they followed a gluten free diet, but the disease was continuing to have a substantial impact on their lives, despite several years of treatment. They experienced cognitive, somatic as well as mental symptoms, including impact on personality (e.g. having a shorter fuse, being more miserable or tired). However, only a few informants had sought medical care for persistent symptoms. Instead they tried to manage these by themselves, e.g. abstaining from food during periods of more intense symptom, or using distraction. The management of persistent symptoms resembled thorough detective work. To prevent problems related to residual symptoms the informants used withdrawal of social contact as well as acceptance of their situation. Conclusion: People with treated coeliac disease may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should provide guidance on management strategies to facilitate the daily life. Furthermore, information to newly diagnosed persons should make them aware of the possibility to experience continued symptoms, despite treatment. (C) 2017 Elsevier Inc. All rights reserved.

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