uu.seUppsala University Publications
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Towards Good Palliation for Children with Cancer: Recognizing the Family and the Value of Communication
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Visby Lasarett, Region Gotland. (Centrum för forsknings och bioetik)
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Pediatric cancer imposes a threat on the child’s life and approximately every fifth child diagnosed with cancer will die due to his or her disease. The overall aim of this thesis was to explore palliative care of children with cancer and bereaved family members. The thesis includes data collected retrospectively from medical records, a nationwide questionnaire directed to bereaved parents, a nationwide questionnaire for bereaved siblings and individual interviews with children in cancer care.

Most children dying from cancer were recognized as being beyond cure at time of death; for some this recognition occurred close to death, leaving little time for potential personal preferences (Paper I). Bereaved parents and siblings noticed extensive suffering in the child close to death (Paper II, VI), with physical fatigue being the most commonly reported symptom irrespectively of age and diagnosis of the child (Paper II). Bereaved parents’ psychological well-being appears to be closely related to experiencing suffering in the dying child (Paper III) but also to high-intensity treatment (with bone marrow transplant as the example) of a child that still dies from his or her disease (Paper IV). Bereaved siblings experience a lack in information at the end of their brother’s or sister’s life and report feeling poorly prepared for the loss. An increased risk of anxiety was seen in siblings whom nobody talked to about what to expect at the time of death of their brother or sister (Paper VI). When caring for children with cancer it is vital to take the individual child’s awareness and preferences regarding information into consideration. Bereaved parents who have communicated with their child about death expressed that this often occurred at the child’s own initiative (Paper V) and simple means such as fairy tales could be used to facilitate communication. Ill children themselves expressed in interviews wanting honest, but still hopeful information regarding bad news (Paper VII).

The results of this thesis stress the importance of striving to achieve good communication and keeping a family perspective throughout care of children with cancer.

 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2015. , 73 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1123
Keyword [en]
palliative care, child, cancer, family, communication, end-of-life care, bereavement
National Category
Pediatrics Cancer and Oncology
Research subject
Medical Science
Identifiers
URN: urn:nbn:se:uu:diva-259409ISBN: 978-91-554-9291-5 (print)OAI: oai:DiVA.org:uu-259409DiVA: diva2:844325
Public defence
2015-09-25, A1:111a, BMC, Husargatan 3, Uppsala, 09:00 (English)
Opponent
Supervisors
Available from: 2015-09-04 Created: 2015-08-03 Last updated: 2015-10-01
List of papers
1. Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden
Open this publication in new window or tab >>Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden
Show others...
2013 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, no 7, 744-748 p.Article in journal (Refereed) Published
Abstract [en]

Aim To estimate whether and when children dying from a malignancy are recognized as being beyond cure and to study patterns of care the last weeks of life. Methods A nationwide retrospective medical record review was conducted. Medical records of 95 children (60% of eligible children) who died from a malignancy 2007-2009 in Sweden were studied. Results Eighty-three children (87%) were treated without curative intent at the time of death. Children with haematological malignancies were less likely to be recognized as being beyond cure than children with brain tumours [relative risks (RR) 0.7; 95% confidence interval (CI) 0.6-0.9] or solid tumours (RR 0.8; 0.6-1.0). The transition to noncurative care varied from the last day of life to over four years prior to death (median 60days). Children with haematological malignancies were treated with a curative intent closer to death and were also given chemotherapy (RR 5.5; 1.3-22.9), transfusions (RR 2.0; 1.0-4.0) and antibiotics (RR 5.3; 1.8-15.5) more frequently than children with brain tumours the last weeks of life. Conclusion The majority of children dying from a malignancy were treated with noncurative intent at the time of death. The timing of a transition in care varied with the diagnoses, being closer to death in children with haematological malignancies.

Keyword
Children with cancer, End-of-life, Paediatric oncology, Palliative care
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-203516 (URN)10.1111/apa.12242 (DOI)000319741800029 ()
Available from: 2013-07-17 Created: 2013-07-15 Last updated: 2015-10-01Bibliographically approved
2. Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up
Open this publication in new window or tab >>Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up
Show others...
2006 (English)In: Pediatrics, ISSN 0031-4005Article in journal (Refereed) Published
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-259403 (URN)
Available from: 2015-08-03 Created: 2015-08-03 Last updated: 2015-10-01
3. Anxiety is contagious: symptoms of anxiety in the terminally ill chid affect long-term psychological well-being in bereaved parents
Open this publication in new window or tab >>Anxiety is contagious: symptoms of anxiety in the terminally ill chid affect long-term psychological well-being in bereaved parents
Show others...
2010 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017Article in journal (Refereed) Published
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-259405 (URN)
Available from: 2015-08-03 Created: 2015-08-03 Last updated: 2015-10-01
4. Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychologicaal morbidity in bereaved parents
Open this publication in new window or tab >>Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychologicaal morbidity in bereaved parents
Show others...
2011 (English)In: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365Article in journal (Refereed) Published
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-259406 (URN)
Available from: 2015-08-03 Created: 2015-08-03 Last updated: 2015-10-01
5. On the child's own initiative: parents communicate with their dying child about death
Open this publication in new window or tab >>On the child's own initiative: parents communicate with their dying child about death
Show others...
2015 (English)In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 39, no 2, 111-117 p.Article in journal (Refereed) Published
Abstract [en]

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about deathwith their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.

National Category
Other Health Sciences
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-237041 (URN)10.1080/07481187.2014.913086 (DOI)000347166600006 ()25153166 (PubMedID)
Available from: 2014-11-26 Created: 2014-11-26 Last updated: 2015-11-25Bibliographically approved
6. Siblings’ experiences of the brother’s or sister’s cancer death: a nationwide follow-up 2-9 years later
Open this publication in new window or tab >>Siblings’ experiences of the brother’s or sister’s cancer death: a nationwide follow-up 2-9 years later
Show others...
(English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611Article in journal (Refereed) Accepted
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-259407 (URN)
Available from: 2015-08-03 Created: 2015-08-03 Last updated: 2015-10-01
7. Tell the truth but leave room for hope - Children with cancer share their views on receiving bad news
Open this publication in new window or tab >>Tell the truth but leave room for hope - Children with cancer share their views on receiving bad news
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Pediatrics
Identifiers
urn:nbn:se:uu:diva-259408 (URN)
Available from: 2015-08-03 Created: 2015-08-03 Last updated: 2015-10-01

Open Access in DiVA

fulltext(1145 kB)452 downloads
File information
File name FULLTEXT01.pdfFile size 1145 kBChecksum SHA-512
87da840cb8fc8746447dc30dd843f73e6d9c5b4436078f0f794039e7a7361c5e5ba4c459eb2de0edb43d5cd6da554a0c5a90684c334e9475622d1f94bbb86398
Type fulltextMimetype application/pdf
Buy this publication >>

Search in DiVA

By author/editor
Jalmsell, Li
By organisation
Centre for Research Ethics and Bioethics
PediatricsCancer and Oncology

Search outside of DiVA

GoogleGoogle Scholar
Total: 452 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Total: 25372 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf