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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
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Measurement challenges of informal caregiving: a novel measurement method applied to a cohort of palliative care patients.

https://arctichealth.org/en/permalink/ahliterature140367
Source
Soc Sci Med. 2010 Nov;71(10):1890-5
Publication Type
Article
Date
Nov-2010
Author
Serge Dumont
Philip Jacobs
Véronique Turcotte
Donna Anderson
François Harel
Author Affiliation
Laval University, School of Social Work, Pavillon Charles-De Koninck, Québec, Québec, Canada. serge.dumont@svs.ulaval.ca
Source
Soc Sci Med. 2010 Nov;71(10):1890-5
Date
Nov-2010
Language
English
Publication Type
Article
Keywords
Aged
Canada
Caregivers - statistics & numerical data
Female
Home Nursing
Humans
Male
Middle Aged
Palliative Care
Prospective Studies
Questionnaires
Time Factors
Workload
Abstract
Informal caregiving is a complex concept, and inconsistencies are found in the literature regarding how to measure it. The differences in tasks included in the definition of caregiving, as well as the different methods used to measure caregiving time may explain the huge variations in results found in the literature. The current paper aimed to lay out the challenges of how to calculate the time spent by informal caregivers on providing care and assistance to an ill person at home. It also proposes a method for measuring informal caregiving time, which attempts to distinguish between "normal" activities and "caregiving" activities. The proposed measurement method is then applied to a cohort of informal caregivers of palliative care patients. The illustration study revealed that this method brought advantages comparatively to other methods, and that persisting challenges remain in measuring informal caregiving time. We conclude that, the estimate of time spent caregiving for palliative care patients may be useful in guiding support programs for the families taking care of a loved one at home during the palliative phase of care.
PubMed ID
20884103 View in PubMed
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Evaluating the economic loss of caregiving for palliative care patients.

https://arctichealth.org/en/permalink/ahliterature130888
Source
J Palliat Care. 2011;27(3):210-5
Publication Type
Article
Date
2011
Author
Philip Jacobs
Serge Dumont
Véronique Turcotte
Donna Anderson
Author Affiliation
Department of Medicine, University of Alberta, and Institute of Health Economics, Edmonton, Alberta, Canada.
Source
J Palliat Care. 2011;27(3):210-5
Date
2011
Language
English
Publication Type
Article
Keywords
Aged
Canada
Caregivers - economics
Cost of Illness
Female
Financing, Personal
Humans
Income
Insurance Coverage
Male
Middle Aged
Palliative Care - economics
Poverty
Abstract
Our aim is to provide a unified measure of the economic burden faced by families during the palliative phase of care and to compare this measure to Statistics Canada's low-income cut-off.
Samples of palliative care patients living at home and their main informal caregivers were recruited in five Canadian urban regions. Interviews were performed every two weeks until the patient's passing, up to a maximum of six months. Participants were asked to provide details about their expenses and their absences from work that related specifically to the patient's condition. Income loss was evaluated for 192 family units.
About 9 percent of families incurred economic losses in excess of 10 percent of their pre-study gross annual income; low-income status increased from 27 (before) to 40 (after).
This is the first study to provide a unified measure of economic losses of caregiving that can be related to a publicly designated low-income threshold.
PubMed ID
21957798 View in PubMed
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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
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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
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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
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Exploring generalizability in a study of costs for community-based palliative care.

https://arctichealth.org/en/permalink/ahliterature137495
Source
J Pain Symptom Manage. 2011 Apr;41(4):779-87
Publication Type
Article
Date
Apr-2011
Author
M Ruth Lavergne
Grace M Johnston
Jun Gao
Serge Dumont
Fred I Burge
Author Affiliation
Department of Community Health and Epidemiology, Dalhousie University, Halifax, Nova Scotia, Canada.
Source
J Pain Symptom Manage. 2011 Apr;41(4):779-87
Date
Apr-2011
Language
English
Publication Type
Article
Keywords
Aged
Caregivers
Community Health Services - economics
Costs and Cost Analysis
Death
Female
Home Care Services - economics
Humans
Male
Middle Aged
Neoplasms - complications
Nova Scotia
Palliative Care - economics
Socioeconomic Factors
Survival
Abstract
Palliative care researchers face challenges recruiting and retaining study subjects.
This article investigates selection, study site, and participation biases to assess generalizability of a cost analysis of palliative care program (PCP) clients receiving care at home.
Study subjects' sociodemographic, geographic, survival, disease, and treatment characteristics were compared for the same year and region with those of three populations. Comparison I was with nonstudy subjects enrolled in the PCP to assess selection bias. Comparison II was with adults who died of cancer to assess study site bias. Comparison III was with study-eligible persons who declined to participate in order to assess participation bias.
Comparison I: When compared with the other 1010 PCP clients, the 50 study subjects were on average 3.6 years younger (P=0.03), enrolled 70 days longer in the PCP (P
Notes
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PubMed ID
21276697 View in PubMed
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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
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Protection against perceptions of powerlessness and helplessness during palliative care: the family members' perspective.

https://arctichealth.org/en/permalink/ahliterature132242
Source
Palliat Support Care. 2011 Sep;9(3):251-62
Publication Type
Article
Date
Sep-2011
Author
Anna Milberg
Peter Strang
Author Affiliation
Department of Social and Welfare Studies, Linköping University, LAH/Unit of Palliative Care, University Hospital, Linköping, and Palliative Education and Research Centre in the County of Östergötland, Östergötland, Sweden. anna.milberg@isv.liu.se
Source
Palliat Support Care. 2011 Sep;9(3):251-62
Date
Sep-2011
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Aged
Aged, 80 and over
Bereavement
Existentialism
Family - psychology
Female
Home Care Services
Humans
Internal-External Control
Male
Middle Aged
Neoplasms - psychology
Palliative Care - psychology
Power (Psychology)
Questionnaires
Sweden
Young Adult
Abstract
Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.
Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.
Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.
The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.
PubMed ID
21838946 View in PubMed
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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
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PubMed ID
27837324 View in PubMed
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20 records – page 1 of 2.