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11 records – page 1 of 2.

Burden to others and the terminally ill.

https://arctichealth.org/en/permalink/ahliterature162607
Source
J Pain Symptom Manage. 2007 Nov;34(5):463-71
Publication Type
Article
Date
Nov-2007
Author
Harvey Max Chochinov
Linda J Kristjanson
Thomas F Hack
Thomas Hassard
Susan McClement
Mike Harlos
Author Affiliation
Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada. harvey.chochinov@cancercare.mb.ca
Source
J Pain Symptom Manage. 2007 Nov;34(5):463-71
Date
Nov-2007
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adaptation, Psychological
Aged
Cost of Illness
Female
Humans
Male
Manitoba
Neoplasms - complications
Neuropsychological Tests
Palliative Care
Stress, Psychological - etiology - psychology
Terminal Care - psychology
Abstract
Studies of patients who are terminally ill consistently identify strong associations between "sense of burden to others" and marked end-of-life distress. However, little research has addressed the issue of burden to others among patients nearing death. The aim of this study was to carefully examine "burden to others" and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of "burden to others." Forty percent of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of "burden to others;" 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range. The most highly correlated variables with "sense of burden to others" included depression (r=0.460; df=201, P
PubMed ID
17616329 View in PubMed
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Designing a Canadian pediatric palliative care residency program.

https://arctichealth.org/en/permalink/ahliterature132572
Source
J Palliat Care. 2011;27(2):175-80
Publication Type
Article
Date
2011
Author
Jana Pilkey
Mike Harlos
Christopher Hohl
Author Affiliation
Department of Family Medicine, Section of Palliative Medicine, University of Manitoba, and Palliative Care Program, Winnipeg Regional Health Authority, St. Boniface General Hospital, A8024-409 Tache Ave. Winnipeg, Manibota, Canada. jpilkey@sbgh.mb.ca
Source
J Palliat Care. 2011;27(2):175-80
Date
2011
Language
English
Publication Type
Article
Keywords
Child
Curriculum
Humans
Internship and Residency - organization & administration
Manitoba
Palliative Care
Pediatrics - education
Program Development
PubMed ID
21805954 View in PubMed
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Developing palliative care surveillance in Canada: results of a pilot study.

https://arctichealth.org/en/permalink/ahliterature186458
Source
J Palliat Care. 2002;18(4):262-9
Publication Type
Article
Date
2002
Author
Leslie A Gaudette
Fan Shi
Tammy Lipskie
Pierre Allard
Robin L Fainsinger
David Maxwell
Mike Harlos
Author Affiliation
Cancer Division, Centre for Chronic Disease Prevention and Control, Health Canada, Ottawa, Canada.
Source
J Palliat Care. 2002;18(4):262-9
Date
2002
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Age Distribution
Aged
Aged, 80 and over
Canada - epidemiology
Child
Child, Preschool
Data Collection - methods
Female
Health Services Research - methods
Humans
Incidence
Infant
Length of Stay - statistics & numerical data
Male
Middle Aged
Neoplasms - epidemiology - therapy
Palliative Care - statistics & numerical data
Pilot Projects
Population Surveillance - methods
Program Development
Retrospective Studies
Abstract
A pilot study compiled data from six palliative care centres across Canada to assess the feasibility of developing a national surveillance system.
Data provided for the three-year period between 1993-1997 were combined into a comparative minimum data set. Analyses included 6,369 care episodes from five centres, plus 948 patients from one centre.
Care was provided in various settings including acute care wards, dedicated palliative care units, tertiary care, chronic care, and at home. Palliative care patients comprised equal numbers of men and women, with a median age of 69 years; 92% had cancer diagnoses. Median length of stay (LOS) for each care episode was 13 days, increasing to 40-43 days for a patient's entire time in care. LOS varied greatly, by care setting, from seven days (dedicated unit), to 19 days (tertiary unit), 37 days (home), and 54 days (chronic care). Our findings are similar to those reported from national surveys in Australia and the United Kingdom.
This study generated useful baseline data and identified key issues requiring resolution before establishing a national surveillance system, including the need to track patients across care settings.
PubMed ID
12611316 View in PubMed
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Dignity in the terminally ill: a cross-sectional, cohort study.

https://arctichealth.org/en/permalink/ahliterature187218
Source
Lancet. 2002 Dec 21-28;360(9350):2026-30
Publication Type
Article
Author
Harvey Max Chochinov
Thomas Hack
Thomas Hassard
Linda J Kristjanson
Susan McClement
Mike Harlos
Author Affiliation
Department of Psychiatry, University of Manitoba, Winnipeg, Canada. chochin@cc.UManitoba.CA
Source
Lancet. 2002 Dec 21-28;360(9350):2026-30
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Aged
Cohort Studies
Cross-Sectional Studies
Educational Status
Female
Humans
Male
Manitoba
Neoplasms
Palliative Care
Quality of Life
Questionnaires
Right to Die
Abstract
Considerations of dignity are often raised in reference to the care of dying patients. However, little research that addresses this issue has been done. Our aim was to identify the extent to which dying patients perceive they are able to maintain a sense of dignity, and to ascertain how demographic and disease-specific variables relate to the issue of dignity in these individuals.
We did a cross-sectional study of a cohort of terminally ill patients with cancer, who had a life expectancy of less than 6 months. We enrolled 213 patients from two palliative care units in Winnipeg, Canada, and asked them to rate their sense of dignity. Our main outcome measures included: a 7-point sense of dignity item; the symptom distress scale; the McGill pain questionnaire; the index of independence in activities of daily living (IADL); a quality of life scale; a brief battery of self-report measures, including screening for desire for death, anxiety, hopelessness, and will to live; burden to others; and requirement for social support.
16 of 213 patients (7.5%; 95% CI 4-11) indicated that loss of dignity was a great concern. These patients were far more than likely than the rest of the cohort to report psychological distress and symptom distress, heightened dependency needs, and loss of will to live.
Loss of dignity is closely associated with certain types of distress often seen among the terminally ill. Preservation of dignity should be an overall aim of treatment and care in patients who are nearing death.
Notes
Comment In: Lancet. 2002 Dec 21-28;360(9350):1997-812504390
Comment In: Lancet. 2003 Mar 1;361(9359):78312620760
PubMed ID
12504398 View in PubMed
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Dignity in the terminally ill: a developing empirical model.

https://arctichealth.org/en/permalink/ahliterature191688
Source
Soc Sci Med. 2002 Feb;54(3):433-43
Publication Type
Article
Date
Feb-2002
Author
Harvey Max Chochinov
Thomas Hack
Susan McClement
Linda Kristjanson
Mike Harlos
Author Affiliation
Department of Psychiatry-PX246, University of Manitoba, PsycHealth Centre, Winnipeg, Canada. chochin@cc.umanitoba.ca
Source
Soc Sci Med. 2002 Feb;54(3):433-43
Date
Feb-2002
Language
English
Publication Type
Article
Keywords
Activities of Daily Living
Adaptation, Psychological
Anecdotes as Topic
Attitude to Death
Cost of Illness
Family Relations
Humans
Interviews as Topic
Manitoba
Neoplasms - psychology
Professional-Patient Relations
Quality of Life
Right to Die
Skilled Nursing Facilities - utilization
Terminal Care
Terminally Ill - psychology
Abstract
Despite use of the term dignity in arguments for and against a patient's self-governance in matters pertaining to death, there is little empirical research on how this term has been used by patients who are nearing death. The objective of this study was to determine how dying patients understand and define the term dignity, in order to develop a model of dignity in the terminally ill. A semi-structured interview was designed to explore how patients cope with their advanced cancer and to detail their perceptions of dignity. Interviews were audiotaped and transcribed verbatim. A consecutive sample of 50 consenting patients with advanced terminal cancer were recruited over a 15-month period of time from an urban extended care hospital housing a specialized unit for palliative care. This unit provides both inpatient services. and coordinates end-of-life care community based programming. Data were analysed using latent content analysis and constant comparison techniques. Four members of the research team independently coded the transcribed data, to develop conceptually meaningful categories of responses. Operational definitions were written for major categories, themes and sub-themes. Three major categories emerged from the qualitative analysis, including illness-related concerns; dignity conserving repertoire; and social dignity inventory. These broad categories and their carefully defined themes and sub-themes form the foundation for an emerging model of dignity amongst the dying. The concept of dignity and the dignity model offer a way of understanding how patients face advancing terminal illness. This will serve to promote dignity and the quality of life of patients nearing death.
PubMed ID
11824919 View in PubMed
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Dignity therapy: a feasibility study of elders in long-term care.

https://arctichealth.org/en/permalink/ahliterature127040
Source
Palliat Support Care. 2012 Mar;10(1):3-15
Publication Type
Article
Date
Mar-2012
Author
Harvey Max Chochinov
Beverley Cann
Katherine Cullihall
Linda Kristjanson
Mike Harlos
Susan E McClement
Thomas F Hack
Tom Hassard
Author Affiliation
Department of Psychiatry, University of Manitoba, Winnipeg, Canada. harvey.chochinov@cancercare.mb.ca
Source
Palliat Support Care. 2012 Mar;10(1):3-15
Date
Mar-2012
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Alzheimer Disease - psychology - therapy
Caregivers - psychology
Feasibility Studies
Female
Frail Elderly - psychology
Humans
Long-Term Care - psychology
Male
Manitoba
Memory, Episodic
Middle Aged
Narration
Palliative Care - psychology
Personhood
Psychotherapy - methods
Rehabilitation Centers
Abstract
The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly.
Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs).
Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families.
This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.
PubMed ID
22329932 View in PubMed
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Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

https://arctichealth.org/en/permalink/ahliterature173271
Source
J Clin Oncol. 2005 Aug 20;23(24):5520-5
Publication Type
Article
Date
Aug-20-2005
Author
Harvey Max Chochinov
Thomas Hack
Thomas Hassard
Linda J Kristjanson
Susan McClement
Mike Harlos
Author Affiliation
Department of Psychiatry, Family Medicine, Community Health Sciences, and Faculty of Nursing, University of Manitoba, Canada. harvey.chochinov@cancercare.mb.ca
Source
J Clin Oncol. 2005 Aug 20;23(24):5520-5
Date
Aug-20-2005
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Aged
Attitude to Death
Australia
Cost of Illness
Family Relations
Humans
Manitoba
Middle Aged
Neoplasms - psychology
Patient satisfaction
Quality of Life
Right to Die
Spirituality
Statistics, nonparametric
Stress, Psychological
Terminal Care - methods
Terminally Ill - psychology
Abstract
This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress.
Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey.
Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000).
Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.
Notes
Comment In: J Clin Oncol. 2005 Aug 20;23(24):5427-816110001
PubMed ID
16110012 View in PubMed
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Family responses to declining intake and weight loss in a terminally ill relative. Part 1: fighting back.

https://arctichealth.org/en/permalink/ahliterature178645
Source
J Palliat Care. 2004;20(2):93-100
Publication Type
Article
Date
2004
Author
Susan E McClement
Lesley F Degner
Mike Harlos
Author Affiliation
Faculty of Nursing, University of Manitoba, Manitoba, Canada.
Source
J Palliat Care. 2004;20(2):93-100
Date
2004
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Anorexia
Canada
Caregivers - psychology
Female
Humans
Male
Middle Aged
Neoplasms - therapy
Palliative Care
Professional-Family Relations
Abstract
We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of "fighting back: it's best to eat." The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.
PubMed ID
15332473 View in PubMed
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The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care.

https://arctichealth.org/en/permalink/ahliterature156482
Source
J Pain Symptom Manage. 2008 Dec;36(6):559-71
Publication Type
Article
Date
Dec-2008
Author
Harvey Max Chochinov
Thomas Hassard
Susan McClement
Thomas Hack
Linda J Kristjanson
Mike Harlos
Shane Sinclair
Alison Murray
Author Affiliation
Department of Psychiatry, University of Manitoba, Winnipeg, Canada. harvey.chochinov@cancercare.mb.ca
Source
J Pain Symptom Manage. 2008 Dec;36(6):559-71
Date
Dec-2008
Language
English
Publication Type
Article
Keywords
Aged
Attitude to Death
Canada - epidemiology
Female
Humans
Male
Palliative Care - psychology
Psychometrics - methods
Questionnaires
Reproducibility of Results
Right to Die
Self-Assessment
Sensitivity and specificity
Spirituality
Stress, Psychological - diagnosis - epidemiology - psychology
Terminally Ill - psychology
Abstract
Quality palliative care depends on a deep understanding of distress facing patients nearing death. Yet, many aspects of psychosocial, existential and spiritual distress are often overlooked. The aim of this study was to test a novel psychometric--the Patient Dignity Inventory (PDI)--designed to measure various sources of dignity-related distress among patients nearing the end of life. Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the PDI. The 25-items of the PDI derive from a model of dignity in the terminally ill. To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the Terminally Ill. Cronbach's coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance. Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress. The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress. Identifying these sources of distress is a critical step toward understanding human suffering and should help clinicians deliver quality, dignity-conserving end-of-life care.
PubMed ID
18579340 View in PubMed
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Personality, neuroticism, and coping towards the end of life.

https://arctichealth.org/en/permalink/ahliterature167333
Source
J Pain Symptom Manage. 2006 Oct;32(4):332-41
Publication Type
Article
Date
Oct-2006
Author
Harvey Max Chochinov
Linda J Kristjanson
Thomas F Hack
Thomas Hassard
Susan McClement
Mike Harlos
Author Affiliation
Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada. harvey.chochinov@cancercare.mb.ca
Source
J Pain Symptom Manage. 2006 Oct;32(4):332-41
Date
Oct-2006
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Aged
Female
Humans
Male
Manitoba - epidemiology
Neoplasms - epidemiology - psychology
Neurotic Disorders - epidemiology - psychology
Personality
Risk Assessment - methods
Terminally Ill - psychology - statistics & numerical data
Abstract
The influence of personality characteristics on how patients cope with various challenges at the end of life has not been extensively studied. In order to examine the association between end-of-life experience and neuroticism (defined within the personality literature as a trait tendency to experience psychological distress), a measure of neuroticism was administered to a cohort of dying cancer patients. Various other measures of physical, psychological, and existential distress were also measured to explore their possible connection to patient personality style. The personality characteristic neuroticism demonstrated a significant relationship with several end-of-life sources of distress, including depression, anxiety, sense of dignity, quality of life (rating and satisfaction), hopelessness, concentration, and outlook on the future. Neuroticism appears to have a significant association with the dying experience. This association is expressed across the psychological, existential and, to a lesser extent, physical and social domains of end-of-life distress. This may help clinicians identify vulnerable individuals who are most likely to have poorer adjustments and may benefit from earlier targeted interventional approaches. Exploring the relationship between various facets of personality and end-of-life distress, and mapping this information against optimal therapeutic responses, remains the challenge for future research broaching this intriguing and largely ignored area of palliative care.
PubMed ID
17000350 View in PubMed
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11 records – page 1 of 2.