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Care-related distress: a nationwide study of parents who lost their child to cancer.

https://arctichealth.org/en/permalink/ahliterature16745
Source
J Clin Oncol. 2005 Dec 20;23(36):9162-71
Publication Type
Article
Date
Dec-20-2005
Author
Ulrika Kreicbergs
Unnur Valdimarsdóttir
Erik Onelöv
Olle Björk
Gunnar Steineck
Jan-Inge Henter
Author Affiliation
Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology; Karolinska Institutet, Karolinska Hospital, Stockholm. Ulrika.Kreicbergs@onkpat.ki.se
Source
J Clin Oncol. 2005 Dec 20;23(36):9162-71
Date
Dec-20-2005
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Bereavement
Caregivers - psychology
Child
Child, Preschool
Death
Female
Humans
Infant
Infant, Newborn
Male
Neoplasms - mortality - rehabilitation
Pain
Palliative Care
Parent-Child Relations
Quality of Health Care
Quality of Life
Research Support, Non-U.S. Gov't
Stress, Psychological
Abstract
PURPOSE: Palliative care is an important part of cancer treatment. However, little is known about how care-related factors affect bereaved intimates in a long-term perspective. We conducted a population-based, nationwide study addressing this issue, focusing on potential care-related stressors in parents losing a child to cancer. METHODS: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer in 1992 to 1997. The parents were asked, through an anonymous postal questionnaire, about their experience of the care given and to what extent these experiences still affect them today. RESULTS: Information was supplied by 449 (80%) of 561 eligible parents. Among 196 parents of children whose pain could not be relieved, 111 (57%) were still affected by it 4 to 9 years after bereavement. Among 138 parents reporting that the child had a difficult moment of death, 78 (57%) were still affected by it at follow-up. The probability of parents reporting that their child had a difficult moment of death was increased (relative risk = 1.4; 95% CI, 1.0 to 1.8) if staff were not present at the moment of death. Ten percent of the parents (25 of 251 parents) were not satisfied with the care given during the last month at a pediatric hematology/oncology center; the corresponding figure for care at other hospitals was 20% (33 of 168 parents; P = .0163). CONCLUSION: Physical pain and the moment of death are two important issues to address in end-of-life care of children with cancer in trying to reduce long-term distress in bereaved parents.
Notes
Comment In: J Clin Oncol. 2005 Dec 20;23(36):9055-716314610
PubMed ID
16172455 View in PubMed
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Intensive chemotherapy without radiotherapy gives more than 85% event-free survival for non-Hodgkin lymphoma without central nervous involvement: a 6-year population-based study from the nordic society of pediatric hematology and oncology.

https://arctichealth.org/en/permalink/ahliterature17525
Source
J Pediatr Hematol Oncol. 2004 Sep;26(9):555-60
Publication Type
Article
Date
Sep-2004
Author
Ildikó Márky
Olle Björk
Erik Forestier
Olofur G Jónsson
Mikko Perkkiö
Kjeld Schmiegelow
Ingebjörg Storm-Mathiesen
Göran Gustafsson
Author Affiliation
Department of Pediatrics, The Queen Silivia Children's Hospital, Göteborg, Sweden. ildiko.marky@pediat.gu.se
Source
J Pediatr Hematol Oncol. 2004 Sep;26(9):555-60
Date
Sep-2004
Language
English
Publication Type
Article
Keywords
Adolescent
Antineoplastic Combined Chemotherapy Protocols - therapeutic use
Central Nervous System Neoplasms - drug therapy - mortality - pathology
Child
Child, Preschool
Disease-Free Survival
Female
Finland - epidemiology
Humans
Iceland - epidemiology
Immunophenotyping
Incidence
Lymphoma, Non-Hodgkin - drug therapy - mortality - pathology
Male
Neoplasm Staging
Remission Induction
Scandinavia - epidemiology
Survival Rate
Treatment Outcome
Abstract
BACKGROUND: The prognosis in childhood non-Hodgkin lymphoma (NHL) has improved dramatically during recent decades. The authors report the results from a 6-year population-based study of clinical characteristics and treatment results of NHL from the five Nordic countries. METHODS: All children younger than 15 years of age at diagnosis with NHL diagnosed from 1995 to 2000 were stratified and treated according to immunophenotypic classification and stage of disease. RESULTS: A total of 230 patients were diagnosed with primary NHL, which gives an annual incidence of 0.9/100.000 children, with a median age of 8 years. Seven percent of the children were below 3 years of age at diagnosis. The male/female ratio was 2.3 and was unrelated to age. Patients with pre-B and T-cell NHL constituted 33%, B-cell NHL 53%, and anaplastic large cell lymphoma (ALCL) 14%. According to Murphy's classification, 14% had stage 1, 17% stage 2, 50% stage 3, and 19% stage 4 disease, 12 of whom (28%) had central nervous involvement (CNS) at diagnosis. By January 1, 2003, four children had died during induction, three children died in remission (2, 6, and 26 months from diagnosis), and 24 children experienced a relapse. At 5 years, the probability of event-free survival (p-EFS) was 86+/-2% for all children. The 5-year p-EFS values for stages 1 through 4 were 94%, 97%, 83%, and 79%, respectively. The 5-year p-EFS values were 91% for B-cell, 87% for pre-B, 81% for ALCL, and 79% for T-cell NHL. The 12 patients with CNS involvement at diagnosis had a significantly poorer outcome than stage 4 patients with CNS involvement (p-EFS = 50% vs. 90%, P
PubMed ID
15342981 View in PubMed
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Parents' views on information in childhood cancer care.

https://arctichealth.org/en/permalink/ahliterature139048
Source
Eur J Oncol Nurs. 2011 Sep;15(4):290-5
Publication Type
Article
Date
Sep-2011
Author
Anne Kästel
Karin Enskär
Olle Björk
Author Affiliation
The Red Cross University College, Karolinska University Hospital, Solna, Stockholm, Sweden. kasa@rkh.se
Source
Eur J Oncol Nurs. 2011 Sep;15(4):290-5
Date
Sep-2011
Language
English
Publication Type
Article
Keywords
Adult
Child
Child Health Services
Communication Barriers
Delivery of Health Care
Female
Humans
Male
Neoplasms - nursing
Nursing Process
Parent-Child Relations
Parents
Sweden
Teaching Materials
Abstract
The aim of the study is to highlight parents' views on information in childhood cancer care.
A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child's illness.
If the parents' needs were fulfilled, they were better equipped to handle the illness of their child, which is totally dependant on how the matter of information is dealt with. Information is a complex and demanding issue for the persons involved and the families' views were divergent in this area. Sometimes they seemed to obtain the information successfully and sometimes there were great problems in this respect. Therefore their preferences must be considered.
There has to be an improvement from the aspects of what, when and how information is provided. The major findings of this study indicate that the families need better support and more distinct instructions to be able to cope with the situation.
PubMed ID
21109490 View in PubMed
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Protecting professional composure in transcultural pediatric nursing.

https://arctichealth.org/en/permalink/ahliterature158293
Source
Qual Health Res. 2008 May;18(5):647-57
Publication Type
Article
Date
May-2008
Author
Pernilla Pergert
Solvig Ekblad
Karin Enskär
Olle Björk
Author Affiliation
Karolinska Institutet, Stockholm, Sweden.
Source
Qual Health Res. 2008 May;18(5):647-57
Date
May-2008
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Cultural Diversity
Emotions
Humans
Male
Nurse's Role
Nurse-Patient Relations
Nurses - psychology
Pediatric Nursing
Qualitative Research
Sweden
Abstract
In this qualitative study, we used grounded theory to explore the category of "overwhelming emotional expressions" that emerged in a previous study. Using theoretical sampling, 12 individual interviews were conducted with nurses in Swedish pediatric care. Overwhelming emotional expressions have been found to override nurses' professional preparedness; they continuously resolve this by protecting professional composure. Various strategies are used to protect professional composure, including rationalizing, controlled expression, power display, escape/avoidance, distancing, sharing, and management of space. Some of these strategies are similar to coping strategies. However, they differ in that they are about managing the situation and also include protecting the professional composure of the individual as well as the whole care situation. Nurses need to gain preparedness to meet overwhelming emotional expressions in transcultural care and to be aware of strategies for protecting professional composure so as to use them consciously and positively.
PubMed ID
18337617 View in PubMed
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Resourcing: An approach used by foreign-born parents struggling on in childhood cancer care.

https://arctichealth.org/en/permalink/ahliterature282310
Source
Eur J Oncol Nurs. 2016 Aug;23:1-7
Publication Type
Article
Date
Aug-2016
Author
Pernilla Pergert
Solvig Ekblad
Olle Björk
Karin Enskär
Tom Andrews
Source
Eur J Oncol Nurs. 2016 Aug;23:1-7
Date
Aug-2016
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Child
Child, Preschool
Emigrants and Immigrants - psychology
Female
Health Resources - utilization
Humans
Male
Middle Aged
Neoplasms
Parents - psychology
Sweden
Abstract
To gain knowledge about foreign-born parents' experiences of dealing with their child's illness and treatment in the context of pediatric cancer care.
Data from 11 individual interviews with foreign-born parents were analyzed using qualitative inductive constant comparative analysis.
To struggle on in childhood cancer care, foreign-born parents engaged in resourcing using various strategies including: information-monitoring, staying strong, support-seeking and concern-focusing. Parents experienced obstacles to information-monitoring and support-seeking related to their foreign background.
The results provide a framework for understanding how foreign-born parents try to deal with childhood cancer care and can be used by health care staff to support their resourcing. Even though preconditions might differ, the strategies presented might also be used by native-born parents however further studied are needed.
PubMed ID
27456369 View in PubMed
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Results of the Scandinavian Sarcoma Group XIV protocol for classical osteosarcoma: 63 patients with a minimum follow-up of 4 years.

https://arctichealth.org/en/permalink/ahliterature135922
Source
Acta Orthop. 2011 Apr;82(2):211-6
Publication Type
Article
Date
Apr-2011
Author
Sigbjørn Smeland
Oyvind S Bruland
Lars Hjorth
Otte Brosjö
Bodil Bjerkehagen
Gustaf Osterlundh
Ake Jakobson
Kirsten Sundby Hall
Odd R Monge
Olle Björk
Thor A Alvegaard
Author Affiliation
Division of Surgery and Cancer Medicine, Oslo University Hospital, Norway. sigbjorn.smeland@medisin.uio.no
Source
Acta Orthop. 2011 Apr;82(2):211-6
Date
Apr-2011
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Antibiotics, Antineoplastic - administration & dosage
Antineoplastic Agents - administration & dosage
Antineoplastic Combined Chemotherapy Protocols - administration & dosage
Bone Neoplasms - drug therapy - mortality - surgery
Chemotherapy, Adjuvant
Child
Cisplatin - administration & dosage
Doxorubicin - administration & dosage
Female
Finland
Follow-Up Studies
Humans
Ifosfamide - administration & dosage
Male
Methotrexate - administration & dosage
Norway
Osteosarcoma - drug therapy - mortality - surgery
Sweden
Treatment Outcome
Young Adult
Abstract
The Scandinavian Sarcoma Group (SSG) XIV protocol is based on experience from previous SSG trials and other osteosarcoma intergroup trials, and has been considered the best standard of care for patients with extremity localized, non-metastatic osteosarcoma. We analyzed the outcome in 63 consecutive patients. Patients and methods From 2001 through 2005, 63 patients recruited from centers in Sweden, Norway, and Finland were included. They received preoperative chemotherapy consisting of 2 cycles of paired methotrexate (12 g/m²), cisplatin (90 mg/m²), and doxorubicin (75 mg/m²). 3 cycles were administered postoperatively, and poor histological responders were given 3 additional cycles of ifosfamide (10-12 g/m²) as a salvage strategy.
With a median follow-up of 77 months for survivors, the estimated metastasis-free and sarcoma-related survival at 5 years was 70% and 76%, respectively. 53 patients were treated with limb salvage surgery or rotationplasty and 2 patients experienced a local recurrence. 3 toxic deaths were recorded, all related to acute toxicity from chemotherapy. The 5-year metastasis-free survival of poor histological responders receiving add-on treatment with ifosfamide was 47%, as compared to 89% for good histological responders.
Outcome from the SSG XIV protocol compares favorably with the results of previous SSG trials and other published osteosarcoma trials. However, salvage therapy given to poor responders did not improve outcome to a similar degree as for good responders. In a multi-institutional setting, more than four-fifths of the patients were operated with limb salvage surgery or rotationplasty, with few local recurrences.
Notes
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PubMed ID
21434784 View in PubMed
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6 records – page 1 of 1.