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Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents.

https://arctichealth.org/en/permalink/ahliterature98147
Source
Pediatr Blood Cancer. 2010 May;54(5):751-7
Publication Type
Article
Date
May-2010
Author
Li Jalmsell
Ulrika Kreicbergs
Erik Onelöv
Gunnar Steineck
Jan-Inge Henter
Author Affiliation
Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
Source
Pediatr Blood Cancer. 2010 May;54(5):751-7
Date
May-2010
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Adult
Anxiety - epidemiology - etiology - psychology
Bereavement
Child
Child, Preschool
Depression - epidemiology
Female
Humans
Infant
Infant, Newborn
Male
Neoplasms - psychology
Parent-Child Relations
Parents - psychology
Quality of Life
Sweden - epidemiology
Terminally Ill - psychology
Young Adult
Abstract
BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a malignancy 1992-1997. The parents were asked to assess symptoms affecting their child's well-being during his or her last month of life, and their own current psychological well-being. RESULTS: Altogether 449/561 (80%) eligible parents supplied information on 19 specific symptoms that may occur in children with a malignancy and how each of these symptoms had affected their child's well-being during his or her last month of life (not applicable, none, low, moderate, or severe). These results were linked to questions concerning the parents' self-assessed mental health. Parents of children who were affected by disturbed sleep also had increased risk to develop these symptoms; RR 2.0 [1.4-2.9] for depression, 1.8 [1.3-2.5] for anxiety, 1.5 [1.2-1.8] for decreased psychological well-being, and 1.5 [1.3-1.9] for decreased quality of life. CONCLUSIONS: Bereaved parents whose children were affected by anxiety or disturbed sleep due to anxiety or pain had an increased risk of long-term psychological morbidity. Reducing psychological complications in seriously ill children may also improve the psychological well-being in bereaved parents.
PubMed ID
20135696 View in PubMed
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Are existential questions the norm for terminally ill patients?

https://arctichealth.org/en/permalink/ahliterature185943
Source
J Palliat Med. 2002 Dec;5(6):815-7
Publication Type
Article
Date
Dec-2002

Attitudes toward and desire for assisted suicide among persons with amyotrophic lateral sclerosis.

https://arctichealth.org/en/permalink/ahliterature176340
Source
Omega (Westport). 2003-2004;48(1):1-21
Publication Type
Article
Author
Marie A Achille
James R P Ogloff
Author Affiliation
Department of Psychology, University of Montreal, P.O. Box 6128, Downtown Station, Montreal, Quebec, Canada H3C 3J7. marie.achille@umontreal.ca
Source
Omega (Westport). 2003-2004;48(1):1-21
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Amyotrophic Lateral Sclerosis - psychology
Attitude to Death
Canada
Data Collection
Depression
Great Britain
Humans
Social Support
Stress, Psychological
Suicide, Assisted - psychology
Terminally Ill - psychology
United States
Abstract
This study aimed at investigating attitudes toward assisted suicide among individuals with amyotrophic lateral sclerosis, and the differences in health status (illness severity and functional disability) and psychosocial adjustment (depression, perceived stress, social support, and coping) between those in favor of and those against assisted suicide. This study also aimed at describing the characteristics of terminally-ill individuals who acknowledge contemplating assisted suicide. Forty-four individuals diagnosed with amyotrophic lateral sclerosis were surveyed about their attitudes and the circumstances that would make them contemplate assisted suicide and filled out standardized measures of mood, stress, social support, coping, and illness status. Seventy percent of the sample found assisted suicide morally acceptable and 60% thought it should be legalized. In addition, 60% of patients agreed they could foresee circumstances that would make them contemplate assisted suicide, but only three (7%) indicated they would have requested it already if it had been legal. Willingness to contemplate assisted suicide was associated with reports of elevated levels of depressive symptoms and reports of hopelessness. Results highlight the need to assess psychological status carefully when terminally ill individuals begin contemplating assisted suicide or voice a request for it.
PubMed ID
15688543 View in PubMed
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Attitudes towards, and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit.

https://arctichealth.org/en/permalink/ahliterature16705
Source
Palliat Med. 2005 Sep;19(6):454-60
Publication Type
Article
Date
Sep-2005
Author
Sissel Johansen
Jacob Chr Hølen
Stein Kaasa
Håvard Jon Loge
Lars Johan Materstvedt
Author Affiliation
Department of Cancer Research and Molecular Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway.
Source
Palliat Med. 2005 Sep;19(6):454-60
Date
Sep-2005
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Attitude to Death
Euthanasia - psychology
Female
Humans
Male
Middle Aged
Neoplasms - psychology
Norway
Palliative Care - psychology
Questionnaires
Research Support, Non-U.S. Gov't
Suicide, Assisted - psychology
Terminally Ill - psychology
Abstract
BACKGROUND: Most studies on attitudes towards euthanasia and physician-assisted suicide (PAS) have been conducted in healthy populations. The aim of this study is to explore and describe attitudes towards, and wishes for, euthanasia/PAS in cancer patients with short life expectancy. METHOD: Semi-structured interviews with 18 cancer patients with a life expectancy of less than nine months. All patients were recruited from an inpatient palliative medicine unit. RESULTS: Patients holding a positive attitude towards euthanasia/PAS do not necessarily want euthanasia/PAS for themselves. Wishes are different from requests for euthanasia/PAS. Fear of future pain and a painful death were the main reasons given for a possible wish for euthanasia/PAS. Worries about minimal quality of life and lack of hope also contributed to such thoughts. Wishes for euthanasia/PAS were hypothetical; they were future oriented and with a prerequisite that intense pain, lack of quality of life and/or hope had to be present. Additionally, wishes were fluctuating and ambivalent. CONCLUSION: The wish to die in these patients does not seem to be constant. Rather, this wish is more appropriately seen as an ambivalent and fluctuating mental 'solution' for the future. Health care providers should be aware of this when responding to utterances regarding euthanasia/PAS.
PubMed ID
16218157 View in PubMed
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Balancing: a basic process in end-of-life cancer care.

https://arctichealth.org/en/permalink/ahliterature18052
Source
Qual Health Res. 2003 Dec;13(10):1353-77
Publication Type
Article
Date
Dec-2003
Author
Hans Thulesius
Anders Håkansson
Kerstin Petersson
Source
Qual Health Res. 2003 Dec;13(10):1353-77
Date
Dec-2003
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Caregivers - psychology
Female
Humans
Interviews
Male
Neoplasms - nursing
Palliative Care - psychology
Patient Care Planning
Problem Solving
Qualitative Research
Research Support, Non-U.S. Gov't
Sweden
Terminal Care - psychology
Terminally Ill - psychology
Abstract
In this grounded theory study, the authors interviewed caregivers and patients in end-of-life cancer care and found Balancing to be a fundamental process explaining the problem-solving strategies of most participants and offering a comprehensive perspective on both health care in general and end-of-life cancer care in particular. Balancing stages were Weighing--sensing needs and wishes signaled by patients, gauging them against caregiver resources in diagnosing and care planning; Shifting--breaking bad news, changing care places, and treatments; and Compensating--controlling symptoms, educating and team-working, prioritizing and "stretching" time, innovating care methods, improvising, and maintaining the homeostasis of hope. The Balancing outcome is characterized by Compromising, or "Walking a fine line," at best an optimized situation, at worst a deceit.
PubMed ID
14658351 View in PubMed
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Being in transit and in transition: the experience of time at the place, when living with severe incurable disease--a phenomenological study.

https://arctichealth.org/en/permalink/ahliterature273425
Source
Scand J Caring Sci. 2014 Sep;28(3):458-68
Publication Type
Article
Date
Sep-2014
Author
Sidsel Ellingsen
Åsa Roxberg
Kjell Kristoffersen
Jan Henrik Rosland
Herdis Alvsvåg
Source
Scand J Caring Sci. 2014 Sep;28(3):458-68
Date
Sep-2014
Language
English
Publication Type
Article
Keywords
Adult
Adult Day Care Centers
Aged
Aged, 80 and over
Female
Home Care Services
Humans
Male
Middle Aged
Norway
Nursing Homes
Palliative Care
Terminally Ill - psychology
Abstract
The aim of this study is to describe the experience of time as it presents itself at the place being situated when living with severe incurable disease and receiving palliative care. The empirical data consist of 26 open-ended interviews with 23 patients receiving palliative care at home, at a palliative day care, in a palliative bed unit in hospital or in a nursing home in Norway. A common meaning of a shifting space for living emerged from the analysis and was revealed through three different aspects: (i) Transition from a predictable to an unpredictable time: To live with severe incurable disease marks a transition to a changed life involving an ongoing weakened and altered body with bothersome symptoms making experience of time different and unpredictable. (ii) Transition between a safe and unsafe time: When time is unpredictable, feeling safe is revealed as essential to how time is experienced at the place being situated. (iii) To be in transition from a homely to a homeless existence: In a time of increased bodily weakness, unpredictable ailments and displacements, the sense of belonging to the place is revealed as significant to the experience of time. Not knowing where to be in a time of change is like an existential cry of distress where the foothold in existence is lost. The findings are discussed and interpreted as an embodied experience originating from the passage of time continually affecting life sometimes so fundamentally that it marks a transition to a changed space of life that is reflected in the experience of time.
PubMed ID
23952716 View in PubMed
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Bereaved family members' perspectives on suffering among older rural cancer patients in palliative home nursing care: A qualitative study.

https://arctichealth.org/en/permalink/ahliterature292727
Source
Eur J Cancer Care (Engl). 2017 Nov; 26(6):
Publication Type
Journal Article
Date
Nov-2017
Author
S A Devik
O Hellzen
I Enmarker
Author Affiliation
Centre of Care Research, Department of Health Sciences, Nord University, Steinkjer, Norway.
Source
Eur J Cancer Care (Engl). 2017 Nov; 26(6):
Date
Nov-2017
Language
English
Publication Type
Journal Article
Keywords
Aged
Bereavement
Family
Female
Home Nursing - psychology
Humans
Male
Middle Aged
Neoplasms - nursing - psychology
Norway
Palliative Care - psychology
Qualitative Research
Rural Population - statistics & numerical data
Stress, Psychological - etiology - psychology
Terminally Ill - psychology
Abstract
Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.
PubMed ID
27859824 View in PubMed
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A burden to others: a common source of distress for the terminally ill.

https://arctichealth.org/en/permalink/ahliterature174109
Source
Cogn Behav Ther. 2005;34(2):115-23
Publication Type
Article
Date
2005
Author
Keith G Wilson
Dorothyann Curran
Christine J McPherson
Author Affiliation
Institute for Rehabilitation Research and Development, The Rehabilitation Centre, The Ottawa Hospital, Ottawa, ON, Canada. kewilson@ottawahospital.on.ca
Source
Cogn Behav Ther. 2005;34(2):115-23
Date
2005
Language
English
Publication Type
Article
Keywords
Aged
Canada - epidemiology
Cost of Illness
Family Relations
Female
Humans
Male
Middle Aged
Multivariate Analysis
Neoplasms - psychology
Palliative Care
Regression Analysis
Stress, Psychological - epidemiology - psychology
Suicide - psychology
Terminally Ill - psychology
Abstract
Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the medically ill.
PubMed ID
15986788 View in PubMed
Less detail

Caregiving at the end of life: perspectives from spousal caregivers and care recipients.

https://arctichealth.org/en/permalink/ahliterature163913
Source
Palliat Support Care. 2007 Mar;5(1):11-7
Publication Type
Article
Date
Mar-2007
Author
Susan Jo
Kevin Brazil
Lynne Lohfeld
Kathleen Willison
Author Affiliation
St. Joseph's Health System Research Network, Hamilton, Ontario, Canada.
Source
Palliat Support Care. 2007 Mar;5(1):11-7
Date
Mar-2007
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Caregivers - psychology
Cost of Illness
Depression
Fatigue
Female
Home Care Services
Home Nursing - psychology
Humans
Interviews as Topic
Male
Middle Aged
Ontario
Palliative Care - psychology
Qualitative Research
Social Support
Spouses - psychology
Stress, Psychological
Terminally Ill - psychology
Abstract
The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.
A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.
Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.
Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.
PubMed ID
17461367 View in PubMed
Less detail

Codman Award 2006: the experience of hope in ALS patients.

https://arctichealth.org/en/permalink/ahliterature163917
Source
Axone. 2007;28(2):27-35
Publication Type
Article
Date
2007
Author
Antonietta Vitale
Angela Genge
Author Affiliation
ALS Program, Montreal Neurological Hospital, QC H4A 2B4. toni.vitale@muhc.mcgill.ca
Source
Axone. 2007;28(2):27-35
Date
2007
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adult
Aged
Amyotrophic Lateral Sclerosis - physiopathology - prevention & control - psychology
Attitude to Health
Awards and Prizes
Disease Progression
Female
Health services needs and demand
Humans
Male
Middle Aged
Models, Psychological
Morale
Nursing Methodology Research
Prognosis
Qualitative Research
Quality of Life - psychology
Quebec
Questionnaires
Religion and Psychology
Severity of Illness Index
Social Support
Terminally Ill - psychology
Vital Capacity
Abstract
In this study, the concept of hope in patients diagnosed with amyotrophic lateral sclerosis was explored. The researchers asked, "What does hope mean to you?" The final sample consisted of 13 patients at varying stages of illness and at differing times since diagnosis. Semi-structured interviews with open-ended questions were used to elicit views on hope, its sources and evolution. The findings were similar to a study done by Herth (1990) in which two themes emerged: hope fostering strategies and hope hindering barriers. The study process allowed the researchers to capture the participants' sources of hope. An unexpected finding was that participants described taking part in the interviews as "therapeutic." The findings support the notion that clinicians need to engage patients in discussions of hope, particularly the question of hope and its meaning, in order to adequately address their most important concerns and understand their point of view. Implications and suggestions for nursing practice include taking the time to explore hope-fostering approaches and discuss hope-hindering obstacles and our role in creating a hopeful environment.
PubMed ID
17460956 View in PubMed
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82 records – page 1 of 9.