Skip header and navigation

Refine By

20 records – page 1 of 2.

Improved data validity in the Swedish Register of Palliative Care.

https://arctichealth.org/en/permalink/ahliterature287189
Source
PLoS One. 2017;12(10):e0186804
Publication Type
Article
Date
2017
Author
Lisa Martinsson
Per-Anders Heedman
Staffan Lundström
Bertil Axelsson
Source
PLoS One. 2017;12(10):e0186804
Date
2017
Language
English
Publication Type
Article
Keywords
Humans
Palliative Care
Registries
Sweden
Abstract
The Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ.
Data from 100 consecutive patients' medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen's kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC.
Level of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen's kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms.
The revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients' medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment.
Notes
Cites: J Intern Med. 2015 Jan;277(1):94-13625174800
Cites: Acta Oncol. 2014 Mar;53(3):414-923964659
Cites: Palliat Med. 2012 Jun;26(4):313-2121737480
Cites: Eur J Cancer. 2015 Jul;51(10):1331-925958036
Cites: Acta Oncol. 2011 Jun;50(5):642-721391772
Cites: J Pain Symptom Manage. 2011 Sep;42(3):354-6521454041
Cites: J Pain Symptom Manage. 2009 Dec;38(6):903-1219775860
Cites: J Pain Symptom Manage. 2005 Jun;29(6):572-8315963866
Cites: Pain Manag Nurs. 2003 Dec;4(4):171-514663795
Cites: Eur J Cardiovasc Nurs. 2012 Dec;11(4):454-921764639
Cites: BMC Med Res Methodol. 2010 Mar 18;10:2220298572
Cites: Support Care Cancer. 2015 Feb;23(2):307-1525063272
Cites: BMJ Support Palliat Care. 2015 Jun;5(2):160-824644196
Cites: BMJ Support Palliat Care. 2016 Dec;6(4):452-45825588878
Cites: J Pain Symptom Manage. 2011 Aug;42(2):169-8221429703
Cites: J Clin Oncol. 2011 Oct 10;29(29):3927-3121911715
Cites: Thorax. 2016 Jun;71(6):510-626865603
Cites: Lakartidningen. 2011 Apr 20-May 3;108(16-17):918-2121644380
Cites: BMJ Open. 2012 Aug 30;2(4):null22936818
Cites: J Pain Symptom Manage. 2013 Oct;46(4):556-7223809769
PubMed ID
29049396 View in PubMed
Less detail

Constipation in Specialized Palliative Care: Prevalence, Definition, and Patient-Perceived Symptom Distress.

https://arctichealth.org/en/permalink/ahliterature271796
Source
J Palliat Med. 2015 Jul;18(7):585-92
Publication Type
Article
Date
Jul-2015
Author
Eva Erichsén
Anna Milberg
Tiny Jaarsma
Maria J Friedrichsen
Source
J Palliat Med. 2015 Jul;18(7):585-92
Date
Jul-2015
Language
English
Publication Type
Article
Keywords
Constipation - epidemiology - physiopathology - psychology
Cross-Sectional Studies
Health Knowledge, Attitudes, Practice
Humans
Logistic Models
Palliative Care
Prevalence
Sweden
Terminally ill
Abstract
The prevalence of constipation among patients in palliative care has varied in prior research, from 18% to 90%, depending on study factors.
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.
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).
The prevalence of constipation varied between 7% and 43%, depending on the definition used. Two constipation groups were found: (1) medical constipation group (MCG): =3 defecations/week, n=114 (23%) and (2) perceived constipation group (PCG): patients with a perception of being constipated in the last two weeks, n=171 (35%). Three subgroups emerged: patients with (1) only medical constipation (7%), (2) only perceived constipation (19%), and (3) both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.
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 subgroups, 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.
PubMed ID
25874474 View in PubMed
Less detail

Ethical dilemmas around the dying patient with stroke: a qualitative interview study with team members on stroke units in Sweden.

https://arctichealth.org/en/permalink/ahliterature258547
Source
J Neurosci Nurs. 2014 Jun;46(3):162-70
Publication Type
Article
Date
Jun-2014
Author
Helene Eriksson
Gisela Andersson
Louise Olsson
Anna Milberg
Maria Friedrichsen
Source
J Neurosci Nurs. 2014 Jun;46(3):162-70
Date
Jun-2014
Language
English
Publication Type
Article
Keywords
Attitude of Health Personnel
Attitude to Death
Communication Barriers
Female
Hospice and Palliative Care Nursing - ethics
Humans
Male
Neuroscience Nursing - ethics
Nurses' Aides - ethics - psychology
Nursing Staff, Hospital - ethics - psychology
Nursing, Team - ethics
Palliative Care - ethics
Physical Therapists - ethics - psychology
Qualitative Research
Right to Die - ethics
Stroke - nursing - rehabilitation
Sweden
Terminal Care - ethics
Abstract
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.
PubMed ID
24796473 View in PubMed
Less detail

Does a half-day course about palliative care matter? A quantitative and qualitative evaluation among health care practitioners.

https://arctichealth.org/en/permalink/ahliterature114602
Source
J Palliat Med. 2013 May;16(5):496-501
Publication Type
Article
Date
May-2013
Author
Maria Friedrichsen
Per-Anders Heedman
Eva Åstradsson
Maria Jakobsson
Anna Milberg
Author Affiliation
Palliative Education and Research Center in the County of Östergötland, Vrinnevi Hospital, Norrköping, Sweden. maria.friedrichsen@liu.se
Source
J Palliat Med. 2013 May;16(5):496-501
Date
May-2013
Language
English
Publication Type
Article
Keywords
Adult
Education, Medical, Continuing - organization & administration
Educational Measurement
Female
Focus Groups
Humans
Interviews as Topic
Male
Middle Aged
Palliative Care
Questionnaires
Sweden
Abstract
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.
The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.
An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.
Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).
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.
The course was appreciated and useful in the professionals' work, but it also created problems.
PubMed ID
23600332 View in PubMed
Less detail

Dying cancer patients' own opinions on euthanasia: an expression of autonomy? A qualitative study.

https://arctichealth.org/en/permalink/ahliterature134773
Source
Palliat Med. 2012 Jan;26(1):34-42
Publication Type
Article
Date
Jan-2012
Author
Marit Karlsson
Anna Milberg
Peter Strang
Author Affiliation
Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden. marit.karlsson@ki.se
Source
Palliat Med. 2012 Jan;26(1):34-42
Date
Jan-2012
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Decision Making
Euthanasia - psychology
Female
Humans
Male
Middle Aged
Neoplasms - psychology
Palliative Care
Personal Autonomy
Qualitative Research
Questionnaires
Sweden
Trust
Abstract
Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons.
Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories.
The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust.
Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
PubMed ID
21543526 View in PubMed
Less detail

Advanced palliative home care: next-of-kin's perspective.

https://arctichealth.org/en/permalink/ahliterature18088
Source
J Palliat Med. 2003 Oct;6(5):749-56
Publication Type
Article
Date
Oct-2003
Author
Anna Milberg
Peter Strang
Maria Carlsson
Susanne Börjesson
Author Affiliation
Linköpings Universitet, Division of Geriatrics and Palliative Research Unit, Linköping, Sweden. anna.milberg@lio.se
Source
J Palliat Med. 2003 Oct;6(5):749-56
Date
Oct-2003
Language
English
Publication Type
Article
Keywords
Caregivers - psychology
Comparative Study
Family - psychology
Female
Home Care Services - organization & administration
Humans
Male
Palliative Care - organization & administration
Professional-Family Relations
Questionnaires
Reproducibility of Results
Research Support, Non-U.S. Gov't
Sweden
Abstract
GOALS: (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size. SUBJECTS AND METHODS: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed. MAIN RESULTS: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings. CONCLUSIONS: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.
PubMed ID
14622454 View in PubMed
Less detail

Is it reliable to use cellular phones for symptom assessment in palliative care? Report on a study in patients with advanced cancer.

https://arctichealth.org/en/permalink/ahliterature98636
Source
J Palliat Med. 2009 Dec;12(12):1087
Publication Type
Article
Date
Dec-2009

A good death from the perspective of palliative cancer patients.

https://arctichealth.org/en/permalink/ahliterature286321
Source
Support Care Cancer. 2017 Mar;25(3):933-939
Publication Type
Article
Date
Mar-2017
Author
Lisa Kastbom
Anna Milberg
Marit Karlsson
Source
Support Care Cancer. 2017 Mar;25(3):933-939
Date
Mar-2017
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Attitude to Death
Female
Humans
Male
Middle Aged
Neoplasms - psychology - therapy
Palliative Care - methods - psychology - standards
Patient Preference - psychology
Sweden
Terminal Care - methods - psychology - standards
Terminally Ill - psychology
Abstract
Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden.
Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis.
Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death.
Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches.
Notes
Cites: J Pain Symptom Manage. 2001 Sep;22(3):717-2611532585
Cites: Am J Hosp Palliat Care. 2008 Feb-Mar;25(1):39-4418160544
Cites: Palliat Med. 2012 Jan;26(1):34-4221543526
Cites: Lancet. 2001 Aug 11;358(9280):483-811513933
Cites: JAMA. 2000 Nov 15;284(19):2476-8211074777
Cites: J Pain Symptom Manage. 2007 Jul;34(1):81-9317531434
Cites: Palliat Med. 2005 Sep;19(6):454-6016218157
Cites: J Am Geriatr Soc. 2002 Sep;50(9):1541-812383152
Cites: JAMA. 1999 Jan 13;281(2):163-89917120
Cites: Qual Health Res. 2005 Nov;15(9):1277-8816204405
Cites: Patient Educ Couns. 2006 Dec;64(1-3):378-8616872786
Cites: Support Care Cancer. 2012 May;20(5):1065-7121573739
Cites: Br J Gen Pract. 2011 Apr;61(585):167-7221439174
Cites: Health Serv Res. 1999 Dec;34(5 Pt 2):1189-20810591279
Cites: Palliat Med. 1996 Oct;10(4):307-128931066
Cites: J Pain Symptom Manage. 2001 Sep;22(3):727-3711532586
Cites: Nurse Educ Today. 2004 Feb;24(2):105-1214769454
Cites: Arch Intern Med. 2004 May 10;164(9):977-8115136306
Cites: Qual Health Res. 2011 Dec;21(12):1618-3121734224
Cites: SAGE Open Med. 2014 Apr 22;2:205031211453245626770726
Cites: Nurs Ethics. 1999 Mar;6(2):97-10610358525
Cites: Am J Hosp Palliat Care. 2012 Dec;29(8):632-922363039
Cites: J Clin Oncol. 2011 Oct 10;29(29):3927-3121911715
Cites: Ann Oncol. 2007 Jun;18(6):1090-717355953
Cites: J Pain Symptom Manage. 2006 Feb;31(2):140-716488347
Cites: Am J Hosp Palliat Care. 2004 Mar-Apr;21(2):116-2015055511
Cites: Am J Hosp Palliat Care. 2006 Aug-Sep;23(4):277-8617060291
Cites: Ann Intern Med. 2000 May 16;132(10):825-3210819707
Cites: Soc Sci Med. 2004 Mar;58(5):899-91114732604
PubMed ID
27837324 View in PubMed
Less detail

20 records – page 1 of 2.