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Absorbing information about a child's incurable cancer.

https://arctichealth.org/en/permalink/ahliterature96768
Source
Oncology. 2010;78(3-4):259-66
Publication Type
Article
Date
2010
Author
Patrizia Lannen
Joanne Wolfe
Jennifer Mack
Erik Onelov
Ullakarin Nyberg
Ulrika Kreicbergs
Author Affiliation
Phyllis F. Cantor Center, Boston, MA, USA.
Source
Oncology. 2010;78(3-4):259-66
Date
2010
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Attitude to Death
Bereavement
Child
Female
Humans
Male
Middle Aged
Neoplasms - mortality - psychology
Parents
Professional-Family Relations
Questionnaires
Sweden
Terminal Care - methods
Truth Disclosure
Abstract
PURPOSE: To assess parents' ability to absorb information that their child's cancer was incurable and to identify factors associated with parents' ability to absorb this information. PATIENTS AND METHODS: An anonymous mail-in questionnaire study was performed as a population-based investigation in Sweden between August and October of 2001. 449 parents who lost a child to cancer 4-9 years earlier (response rate 80%) completed the survey. 191 (43%) of the bereaved parents were fathers and 251 (56%) were mothers. RESULTS: Sixty percent of parents (n = 258) reported that they were able to absorb the information that their child's illness was incurable. Parents were better able to absorb this information when the information was given in an appropriate manner (RR 1.6; CI 1.3-2.0), when they shared their problems with others during the child's illness course (RR 1.4; CI 1.1-1.8) and when they had no history of depression (RR 1.3; CI 1.0-1.8). Parents who reported that they were able to absorb the information were more likely to have expressed their farewells to the child in their desired manner (RR 1.3; CI 1.0-1.5). CONCLUSIONS: Parents who received information that their child's illness was incurable in an appropriate manner are more likely to absorb that information. Whether or not parents are able to absorb the information that their child's cancer is incurable has implications in terms of preparation for the child's impending death.
PubMed ID
20523086 View in PubMed
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Acute disaster exposure and mental health complaints of Norwegian tsunami survivors six months post disaster.

https://arctichealth.org/en/permalink/ahliterature91783
Source
Psychiatry. 2008;71(3):266-76
Publication Type
Article
Date
2008
Author
Heir Trond
Weisaeth Lars
Author Affiliation
Norwegian Center for Violence and Traumatic Stress Studies, Ullevål University Hospital, University of Oslo, Oslo, Norway. trond.heir@medisin.uio.no
Source
Psychiatry. 2008;71(3):266-76
Date
2008
Language
English
Publication Type
Article
Keywords
Affective Symptoms - epidemiology - psychology
Bereavement
Dangerous Behavior
Disasters - statistics & numerical data
Family Relations
Female
Friends
Helping Behavior
Humans
Life Change Events
Male
Mental Disorders - diagnosis - epidemiology
Norway - epidemiology
Retrospective Studies
Sex Factors
Stress, Psychological - diagnosis - epidemiology
Survivors - psychology
Abstract
The objective was to investigate the relationship between possible disaster stressors and subsequent health problems among tourists experiencing the 2004 South-East Asia tsunami. A cross-sectional study was performed as a postal survey concerning the experiences of the disaster exposure in retrospect and the presence of psychological symptoms (GHQ-28) in Norwegian tsunami victims 6 months post disaster. The strongest predictors of health complaints were danger of death, witness impressions, and bereavements. Aggravated outcomes were also seen in those who helped others in the acute phase or had sole responsibility for children when the tsunami struck. Having a family member or close friend who was injured was reversely associated with health problems. Women reported more psychological distress than men, but the difference disappeared with increasing degree of danger exposure. Dose-response relationships to psychological distress were found for single exposure factors as well as for the cumulative effects of being exposed to several exposure variables.
PubMed ID
18834277 View in PubMed
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Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.

https://arctichealth.org/en/permalink/ahliterature298130
Source
Scand J Caring Sci. 2018 Sep; 32(3):1254-1260
Publication Type
Journal Article
Date
Sep-2018
Author
Anna O'Sullivan
Joakim Öhlen
Anette Alvariza
Cecilia Håkanson
Author Affiliation
Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Source
Scand J Caring Sci. 2018 Sep; 32(3):1254-1260
Date
Sep-2018
Language
English
Publication Type
Journal Article
Keywords
Adult
Aged
Aged, 80 and over
Bereavement
Caregivers - psychology
Family - psychology
Female
Humans
Male
Middle Aged
Psychometrics
Reproducibility of Results
Surveys and Questionnaires
Sweden
Terminal Care - psychology
Translations
Young Adult
Abstract
Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.
This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.
The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.
The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
PubMed ID
29148073 View in PubMed
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Adolescent coping with grief after the death of a loved one.

https://arctichealth.org/en/permalink/ahliterature190272
Source
Int J Nurs Pract. 2002 Jun;8(3):137-42
Publication Type
Article
Date
Jun-2002
Author
Katja Rask
Marja Kaunonen
Marita Paunonen-Ilmonen
Author Affiliation
Department of Nursing Science, University of Tampere, Finland. katja.rask@mail.diak.fi
Source
Int J Nurs Pract. 2002 Jun;8(3):137-42
Date
Jun-2002
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Adolescent Psychology
Attitude to Death
Bereavement
Female
Finland
Grief
Humans
Male
Questionnaires
Social Support
Abstract
The purpose of this article was to describe adolescent coping after the death of a loved one. Data were obtained by two self-report questionnaires filled in by 14-16-year-old pupils in two secondary schools in Finland. The sample consisted of 89 adolescents (70% girls) who had each experienced the death of a loved one. The instrument used in the study was developed by Hogan and DeSantis. The article reports the responses to two open-ended questions. The data were analyzed using content analysis. The most important factors that helped adolescents cope with grief were self-help and support from parents, relatives and friends. However, the official social support system was not experienced as very helpful. No one reported help, for example, from school health services. According to the adolescents, fear of death, a sense of loneliness and intrusive thoughts were factors that hindered coping with grief. Some respondents felt that parents or friends were an additional burden on them. The results are discussed in terms of identifying the different impact of social support, the importance of self-help and professional help. Knowledge of factors that have an effect on adolescent coping with bereavement is important for families, effective nursing practice, school health services and parents.
PubMed ID
12000632 View in PubMed
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An evaluation of a suicide bereavement peer support program.

https://arctichealth.org/en/permalink/ahliterature139742
Source
Death Stud. 2010 Nov-Dec;34(10):915-30
Publication Type
Article
Author
Constance A Barlow
Jeannette Waegemakers Schiff
Urmil Chugh
Dixie Rawlinson
Elizabeth Hides
Judy Leith
Author Affiliation
Faculty of Social Work, University of Calgary, Calgary, Alberta, Canada. cabarlow@ucalgary.ca
Source
Death Stud. 2010 Nov-Dec;34(10):915-30
Language
English
Publication Type
Article
Keywords
Adult
Aged
Bereavement
Canada
Female
Humans
Male
Middle Aged
Peer Group
Program Evaluation - methods
Social Support
Suicide - psychology
Abstract
Peer support, a cornerstone in recovery programs for mental illness and addiction, has not been widely applied to service programs for survivors of suicide. In 2004-2006 Canadian Mental Health Association Suicide Services in Calgary, Alberta, introduced the Peer Support Program for adults, an adjunct to conventional individual and group intervention. This article reports on a mixed-methods evaluation of the Peer Support Program. Hogan's Grief Response Checklist and the qualitative data tracked positive outcomes for both the peer supporters and the clients. This study challenges the unspoken assumption that survivors of suicide, due to their vulnerability, require the services of highly skilled professionals and would not be in a position to offer unsupervised support to peers. Rather it supports an intervention protocol that consists of peer supporters and professionals working collaboratively to offer cost-effective, client-centered services.
PubMed ID
24482855 View in PubMed
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Antenatal maternal bereavement and childhood cancer in the offspring: a population-based cohort study in 6 million children.

https://arctichealth.org/en/permalink/ahliterature122898
Source
Br J Cancer. 2012 Jul 24;107(3):544-8
Publication Type
Article
Date
Jul-24-2012
Author
J. Li
M. Vestergaard
C. Obel
S. Cnattingus
M. Gissler
J. Ahrensberg
J. Olsen
Author Affiliation
Section for Epidemiology, Department of Public Health, Aarhus University, Bartholins Alle 2, DK 8000 Aarhus C, Denmark. jl@soci.au.dk
Source
Br J Cancer. 2012 Jul 24;107(3):544-8
Date
Jul-24-2012
Language
English
Publication Type
Article
Keywords
Adult
Bereavement
Cohort Studies
Denmark - epidemiology
Female
Humans
Male
Neoplasms - epidemiology - etiology
Pregnancy
Pregnancy Complications - epidemiology - psychology
Prenatal Exposure Delayed Effects
Risk
Stress, Psychological - epidemiology
Sweden - epidemiology
Abstract
Prenatal stress may increase the susceptibility to childhood cancer by affecting immune responses and hormonal balance. We examined whether antenatal stress following maternal bereavement increased the risk of childhood cancer.
All children born in Denmark from 1968 to 2007 (N=2 743 560) and in Sweden from 1973 to 2006 (N=3 400 212) were included in this study. We compared cancer risks in children born to women who lost a first-degree relative (a child, spouse, a parent, or a sibling) the year before pregnancy or during pregnancy with cancer risks in children of women who did not experience such bereavement.
A total of 9795 childhood cancer cases were observed during follow-up of 68 360 707 person years. Children born to women who lost a child or a spouse, but not those who lost other relatives, had an average 30% increased risk of any cancer (hazard ratio (HR) 1.30, 95% confidence interval (CI) 0.96-1.77). The HRs were the highest for non-Hodgkin disease (512 cases in total, HR 3.40, 95% CI 1.51-7.65), hepatic cancer (125 cases in total, HR 5.51, 95% CI 1.34-22.64), and testicular cancer (86 cases in total, HR 8.52, 95% CI 2.03-37.73).
Our data suggest that severe antenatal stress following maternal bereavement, especially due to loss of a child or a spouse, is associated with an increased risk of certain childhood cancers in the offspring, such as hepatic cancer and non-Hodgkin disease, but not with childhood cancer in general.
Notes
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PubMed ID
22759879 View in PubMed
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Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.

https://arctichealth.org/en/permalink/ahliterature17196
Source
Psychol Med. 2004 Nov;34(8):1431-41
Publication Type
Article
Date
Nov-2004
Author
Ulrika Kreicbergs
Unnur Valdimarsdóttir
Erik Onelöv
Jan-Inge Henter
Gunnar Steineck
Author Affiliation
Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet Z6:01, Karolinska Hospital, SE-171 76 Stockholm, Sweden. Ulrika.Kreicbergs@onkpat.ki.se
Source
Psychol Med. 2004 Nov;34(8):1431-41
Date
Nov-2004
Language
English
Publication Type
Article
Keywords
Adult
Age Factors
Aged
Anxiety Disorders - etiology
Bereavement
Case-Control Studies
Child
Child, Preschool
Death
Depression - etiology
Female
Humans
Male
Middle Aged
Morbidity
Neoplasms
Parent-Child Relations
Research Support, Non-U.S. Gov't
Risk factors
Stress, Psychological
Abstract
BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the child. We investigated parental risk of anxiety and depression 4-9 years after the loss of a child owing to a malignancy. METHOD: In 2001, we attempted to contact all parents in Sweden who had lost a child due to a malignancy during 1992--1997. We used an anonymous postal questionnaire and utilized a control group of non-bereaved parents with a living child. RESULTS: Participation among bereaved parents was 449/561 (80 %); among non-bereaved 457/659 (69%). We found an increased risk of anxiety (relative risk 1.5, 95 % confidence interval 1.1-1.9) and depression (relative risk 1.4, 95 % confidence interval 1.1-1.7) among bereaved parents compared with non-bereaved. The risk of anxiety and depression was higher in the period 4-6 years after bereavement than in the 7-9 years period, during which the average excess risks approached zero. Psychological distress was overall higher among bereaved mothers and loss of a child aged 9 years or older implied an increased risk, particularly for fathers. CONCLUSIONS: Psychological morbidity in bereaved parents decreases to levels similar to those among non-bereaved parents 7-9 years after the loss. Bereaved mothers and parents who lose a child 9 years or older have on average an excess risk for long-term psychological distress.
PubMed ID
15724874 View in PubMed
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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 grieving persons and persons in crisis declared of incapacity by experts?]

https://arctichealth.org/en/permalink/ahliterature29609
Source
Tidsskr Nor Laegeforen. 2005 Jun 30;125(13):1853-5
Publication Type
Article
Date
Jun-30-2005
Author
Kari Dyregrov
Author Affiliation
Senter for krisepsykologi, Fabrikkgt. 5, 5059 Bergen. kari@krisepsyk.no
Source
Tidsskr Nor Laegeforen. 2005 Jun 30;125(13):1853-5
Date
Jun-30-2005
Language
Norwegian
Publication Type
Article
Keywords
Adult
Attitude to Death
Bereavement
Child, Preschool
Crisis Intervention - ethics
Grief
Humans
Norway
Personal Autonomy
Professional-Patient Relations - ethics
Social Support
Stress Disorders, Post-Traumatic - prevention & control
PubMed ID
16012561 View in PubMed
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Source
Lancet. 2004 Aug 28-Sep 3;364(9436):737-8
Publication Type
Article
Author
Richard H Burnell
Maree O'Keefe
Author Affiliation
Department of Paediatrics, University of Adelaide, Women's and Children's Hospital, North Adelaide, South Australia 5006, Australia.
Source
Lancet. 2004 Aug 28-Sep 3;364(9436):737-8
Language
English
Publication Type
Article
Keywords
Attitude to Death
Bereavement
Child
Data Collection
Ethics, Research
Humans
Interviews
Parents - psychology
Questionnaires
Sweden
Notes
Comment On: Lancet. 2004 Aug 28-Sep 3;364(9436):787-915337406
PubMed ID
15337385 View in PubMed
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253 records – page 1 of 26.