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Awareness of husband's impending death from cancer and long-term anxiety in widowhood: a nationwide follow-up.

https://arctichealth.org/en/permalink/ahliterature17537
Source
Palliat Med. 2004 Jul;18(5):432-43
Publication Type
Article
Date
Jul-2004
Author
Unnur Valdimarsdóttir
Asgeir R Helgason
Carl-Johan Fürst
Jan Adolfsson
Gunnar Steineck
Author Affiliation
Unnur Valdimarsdóttir Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden. Unnur.Valdimarsdottir@onkpat.ki.se
Source
Palliat Med. 2004 Jul;18(5):432-43
Date
Jul-2004
Language
English
Publication Type
Article
Keywords
Anxiety - etiology
Attitude to Death
Awareness
Confounding Factors (Epidemiology)
Female
Humans
Male
Neoplasms - psychology
Questionnaires
Research Support, Non-U.S. Gov't
Spouses - psychology
Truth Disclosure
Widowhood
Abstract
BACKGROUND: We investigated the predictors and long-term consequences of awareness time - the length of time a woman is aware of her husband's impending death from cancer. METHODS: All women (n = 506) living in Sweden under 80 years of age who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were followed with an anonymous postal questionnaire, 2-4 years after their loss. RESULTS: We received completed questionnaires from 379 of the widows. Of these, 55 (15%) reported an awareness time of 24 hours or less, 56 (15%) of 3-6 months and 95 (26%) of one year or more. The associations between the awareness time and morbidity were of a reverted 'J-shape,' with awareness time of 24 hours or less carrying the highest risk and 3-6/6-12 months the lowest. On comparing the awareness time of 24 hours or less with 3-6 months (preformed response category), the relative risks for anxiety were found to be 1.9. (1.0-3.6) (visual digital scale) and 4.5 (1.0-20.0) for intake of tranquillising drugs. Those not informed of their husband's fatal condition or not provided with psychological support by caregivers during their husband's last months of life had an increased risk of a short awareness time. CONCLUSIONS: During a man's terminal cancer illness, the wife's awareness time varies considerably and is influenced by information and psychological support from caregivers. A short awareness time may result in an additional and avoidable psychological trauma.
PubMed ID
15332421 View in PubMed
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Bereavement stressors and psychosocial well-being of young adults following the loss of a parent - A cross-sectional survey.

https://arctichealth.org/en/permalink/ahliterature295577
Source
Eur J Oncol Nurs. 2018 Aug; 35:33-38
Publication Type
Journal Article
Date
Aug-2018
Author
Tina Lundberg
Ulla Forinder
Mariann Olsson
Carl Johan Fürst
Kristofer Årestedt
Anette Alvariza
Author Affiliation
Department of Neurobiology, Care Sciences and Society/Division of Social Work, Karolinska Institutet, 141 83, Huddinge, Sweden; Department of Health Care Sciences/Palliative Research Centre, Ersta Sköndal Bräcke University College, Box 11189, 100 61, Stockholm, Sweden; Function Area in Social Work and Health, Karolinska University Hospital, 171 76, Stockholm, Sweden. Electronic address: tina.lundberg@esh.se.
Source
Eur J Oncol Nurs. 2018 Aug; 35:33-38
Date
Aug-2018
Language
English
Publication Type
Journal Article
Keywords
Adaptation, Psychological
Adolescent
Adult
Adult Children - psychology
Bereavement
Cross-Sectional Studies
Female
Grief
Humans
Longitudinal Studies
Male
Neoplasms - mortality - psychology
Parents
Surveys and Questionnaires
Sweden
Young Adult
Abstract
The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer.
This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire.
Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n?=?15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n?=?50) did not expect the death when it occurred. The young adults reported low self-esteem (n?=?58, 76%), mild to severe anxiety (n?=?55, 74%), mild to severe depression (n?=?23, 31%) and low life satisfaction.
Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.
PubMed ID
30057081 View in PubMed
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Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes.

https://arctichealth.org/en/permalink/ahliterature295067
Source
Scand J Caring Sci. 2018 Mar; 32(1):299-308
Publication Type
Journal Article
Date
Mar-2018
Author
Sofia Andersson
Olav Lindqvist
Carl-Johan Fürst
Margareta Brännström
Author Affiliation
Department of Nursing, Umeå University, Umeå, Sweden.
Source
Scand J Caring Sci. 2018 Mar; 32(1):299-308
Date
Mar-2018
Language
English
Publication Type
Journal Article
Keywords
Adult
Aged
Aged, 80 and over
Decision Making
Female
Health Personnel - psychology
Homes for the Aged - statistics & numerical data
Humans
Male
Middle Aged
Nursing Homes - statistics & numerical data
Patient-Centered Care - organization & administration
Qualitative Research
Quality of Health Care - organization & administration
Quality of Life - psychology
Sweden
Terminal Care - psychology
Abstract
Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways.
A descriptive qualitative study.
The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes.
Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis.
Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment.
The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement.
PubMed ID
28664584 View in PubMed
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Continuous deep sedation, physician-assisted suicide, and euthanasia in Huntington's disorder.

https://arctichealth.org/en/permalink/ahliterature138804
Source
Int J Palliat Nurs. 2010 Nov;16(11):527-33
Publication Type
Article
Date
Nov-2010
Author
Anna Lindblad
Niklas Juth
Carl Johan Fürst
Niels Lynöe
Author Affiliation
Stockholm Centre for Healthcare Ethics, Karolinska Institutet, Stockholm, Sweden.
Source
Int J Palliat Nurs. 2010 Nov;16(11):527-33
Date
Nov-2010
Language
English
Publication Type
Article
Keywords
Adult
Aged
Attitude of Health Personnel
Attitude to Health
Euthanasia
Female
Humans
Huntington Disease
Hypnotics and Sedatives - administration & dosage
Male
Mental Competency
Middle Aged
Physicians
Practice Guidelines as Topic
Suicide, Assisted
Sweden
Terminal Care
Abstract
To investigate the attitudes among Swedish physicians and the general public towards continuous deep sedation (CDS) as an alternative treatment for a competent, not imminently dying patient with Huntington's disorder requesting physician-assisted suicide (PAS) and euthanasia.
A questionnaire was distributed to 1200 physicians in Sweden and 1201 individuals in Stockholm. It consisted of three parts: 1) A vignette about a competent patient with Huntington's disease requesting PAS. When no longer competent, relatives request euthanasia on behalf of the patient. Responders were asked about their attitudes towards these requests and whether CDS would be an acceptable alternative. 2) General questions about PAS and euthanasia. 3) Background variables.
The response rate was 56% (physicians) and 52% (general public). The majority of the general public and a fairly large proportion of physicians reported more liberal views on CDS than are expressed in current Swedish and international recommendations.
In light of the results, we suggest that there is a need for a broader discussion about the recommendations for CDS, with a special focus on the needs of patients with progressive neurodegenerative disorders.
PubMed ID
21135785 View in PubMed
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Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers.

https://arctichealth.org/en/permalink/ahliterature269257
Source
BMC Palliat Care. 2015;14:16
Publication Type
Article
Date
2015
Author
Maja Holm
Ida Carlander
Carl-Johan Fürst
Yvonne Wengström
Kristofer Årestedt
Joakim Öhlen
Anette Henriksson
Source
BMC Palliat Care. 2015;14:16
Date
2015
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Caregivers - education - psychology
Emotions
Family - psychology
Female
Health Personnel - organization & administration
Home Care Services - organization & administration
Humans
Male
Middle Aged
Palliative Care - methods - organization & administration
Qualitative Research
Sweden
Abstract
Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.
A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.
From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.
The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
Notes
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PubMed ID
25903781 View in PubMed
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Developing a national quality register in end-of-life care: The Swedish experience.

https://arctichealth.org/en/permalink/ahliterature101527
Source
Palliat Med. 2011 Jul 7;
Publication Type
Article
Date
Jul-7-2011
Author
Staffan Lundström
Bertil Axelsson
Per-Anders Heedman
Greger Fransson
Carl Johan Furst
Author Affiliation
Stockholms Sjukhem Foundation and Karolinska Institute, Stockholm, Sweden.
Source
Palliat Med. 2011 Jul 7;
Date
Jul-7-2011
Language
English
Publication Type
Article
Abstract
BACKGROUND: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. AIM: To establish, test and manage a national quality register for end-of-life care. DESIGN: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. SETTING: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. RESULTS: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. CONCLUSIONS: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.
PubMed ID
21737480 View in PubMed
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Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough.

https://arctichealth.org/en/permalink/ahliterature310269
Source
J Pain Symptom Manage. 2019 11; 58(5):784-791.e1
Publication Type
Journal Article
Date
11-2019
Author
Åsa Klint
Elisabeth Bondesson
Birgit H Rasmussen
Carl Johan Fürst
Maria E C Schelin
Author Affiliation
Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden; Skåne University Hospital, Region Skåne, Lund, Sweden. Electronic address: asa.klint@skane.se.
Source
J Pain Symptom Manage. 2019 11; 58(5):784-791.e1
Date
11-2019
Language
English
Publication Type
Journal Article
Keywords
Adult
Aged
Aged, 80 and over
Analgesics, Opioid - therapeutic use
Cohort Studies
Female
Humans
Male
Middle Aged
Pain Management
Palliative Care
Quality of Health Care
Registries
Sweden
Terminal Care
Abstract
Fear of pain resonates with most people, in particular, in relation to dying. Despite this, there are still people dying with unrelieved pain.
We quantified the risk, and investigated risk factors, for dying with unrelieved pain in a nationwide observational cohort study.
Using data from Swedish Register of Palliative Care, we analyzed 161,762 expected deaths during 2011-2015. The investigated risk factors included cause of death, place of death, absence of an end-of-life (EoL) conversation, and lack of contact with pain management expertise. Modified Poisson regression models were fitted to estimate risk ratios (RRs) and 95% confidence intervals (CIs) for dying with unrelieved pain.
Unrelieved pain during the final week of life was reported for 25% of the patients with pain, despite prescription of opioids PRN in 97% of cases. Unrelieved pain was common both among patients dying of cancer and of nonmalignant chronic diseases. Statistically significant risk factors for unrelieved pain included hospital death (RR = 1.84, 95% CI 1.79-1.88) compared with dying in specialist palliative care, absence of an EoL conversation (RR = 1.42, 95% CI 1.38-1.45), and dying of cancer in the bones (RR = 1.13, 95% CI 1.08-1.18) or lung (RR = 1.10, 95% CI 1.06-1.13) compared with nonmalignant causes.
Despite almost complete prescription of opioids PRN for patients with pain, patients die with unrelieved pain. Health care providers, hospitals in particular, need to focus more on pain in dying patients. An EoL conversation is one achievable intervention.
PubMed ID
31319106 View in PubMed
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Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study.

https://arctichealth.org/en/permalink/ahliterature276408
Source
Palliat Med. 2016 Jan;30(1):54-63
Publication Type
Article
Date
Jan-2016
Author
Margareta Brännström
Carl Johan Fürst
Carol Tishelman
Max Petzold
Olav Lindqvist
Source
Palliat Med. 2016 Jan;30(1):54-63
Date
Jan-2016
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Critical Pathways
Female
Homes for the Aged - organization & administration
Humans
Male
Middle Aged
Surveys and Questionnaires
Sweden
Terminal Care - organization & administration - standards
Abstract
Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking.
To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes.
Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services.
Patients who died at all 19 residential care homes in one municipality in Sweden.
Shortness of breath (estimate?=?-2.46; 95% confidence interval?=?-4.43 to -0.49) and nausea (estimate?=?-1.83; 95% confidence interval?=?-3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate?=?-0.47; 95% confidence interval?=?-0.85 to -0.08).
When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.
PubMed ID
25986540 View in PubMed
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38 records – page 1 of 4.