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Towards Good Palliation for Children with Cancer: Recognizing the Family and the Value of Communication
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Centrum för forsknings- och bioetik. Visby Lasarett, Region Gotland. (Centrum för forsknings och bioetik)
2015 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

 

Ort, förlag, år, upplaga, sidor
Uppsala: Acta Universitatis Upsaliensis, 2015. , 73 s.
Serie
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1123
Nyckelord [en]
palliative care, child, cancer, family, communication, end-of-life care, bereavement
Nationell ämneskategori
Pediatrik Cancer och onkologi
Forskningsämne
Medicinsk vetenskap
Identifikatorer
URN: urn:nbn:se:uu:diva-259409ISBN: 978-91-554-9291-5 (tryckt)OAI: oai:DiVA.org:uu-259409DiVA: diva2:844325
Disputation
2015-09-25, A1:111a, BMC, Husargatan 3, Uppsala, 09:00 (Engelska)
Opponent
Handledare
Tillgänglig från: 2015-09-04 Skapad: 2015-08-03 Senast uppdaterad: 2015-10-01
Delarbeten
1. Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden
Öppna denna publikation i ny flik eller fönster >>Transition to noncurative end-of-life care in paediatric oncology: a nationwide follow-up in Sweden
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2013 (Engelska)Ingår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, nr 7, 744-748 s.Artikel i tidskrift (Refereegranskat) 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.

Nyckelord
Children with cancer, End-of-life, Paediatric oncology, Palliative care
Nationell ämneskategori
Medicin och hälsovetenskap
Identifikatorer
urn:nbn:se:uu:diva-203516 (URN)10.1111/apa.12242 (DOI)000319741800029 ()
Tillgänglig från: 2013-07-17 Skapad: 2013-07-15 Senast uppdaterad: 2017-12-06Bibliografiskt granskad
2. Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up
Öppna denna publikation i ny flik eller fönster >>Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up
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2006 (Engelska)Ingår i: Pediatrics, ISSN 0031-4005, E-ISSN 1098-4275Artikel i tidskrift (Refereegranskat) Published
Nationell ämneskategori
Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-259403 (URN)
Tillgänglig från: 2015-08-03 Skapad: 2015-08-03 Senast uppdaterad: 2017-12-04
3. Anxiety is contagious: symptoms of anxiety in the terminally ill chid affect long-term psychological well-being in bereaved parents
Öppna denna publikation i ny flik eller fönster >>Anxiety is contagious: symptoms of anxiety in the terminally ill chid affect long-term psychological well-being in bereaved parents
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2010 (Engelska)Ingår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017Artikel i tidskrift (Refereegranskat) Published
Nationell ämneskategori
Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-259405 (URN)
Tillgänglig från: 2015-08-03 Skapad: 2015-08-03 Senast uppdaterad: 2017-12-04
4. Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychologicaal morbidity in bereaved parents
Öppna denna publikation i ny flik eller fönster >>Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychologicaal morbidity in bereaved parents
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2011 (Engelska)Ingår i: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365Artikel i tidskrift (Refereegranskat) Published
Nationell ämneskategori
Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-259406 (URN)
Tillgänglig från: 2015-08-03 Skapad: 2015-08-03 Senast uppdaterad: 2017-12-04
5. On the child's own initiative: parents communicate with their dying child about death
Öppna denna publikation i ny flik eller fönster >>On the child's own initiative: parents communicate with their dying child about death
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2015 (Engelska)Ingår i: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 39, nr 2, 111-117 s.Artikel i tidskrift (Refereegranskat) 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.

Nationell ämneskategori
Annan hälsovetenskap
Forskningsämne
Medicinsk vetenskap
Identifikatorer
urn:nbn:se:uu:diva-237041 (URN)10.1080/07481187.2014.913086 (DOI)000347166600006 ()25153166 (PubMedID)
Tillgänglig från: 2014-11-26 Skapad: 2014-11-26 Senast uppdaterad: 2017-12-05Bibliografiskt granskad
6. Siblings’ experiences of the brother’s or sister’s cancer death: a nationwide follow-up 2-9 years later
Öppna denna publikation i ny flik eller fönster >>Siblings’ experiences of the brother’s or sister’s cancer death: a nationwide follow-up 2-9 years later
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(Engelska)Ingår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611Artikel i tidskrift (Refereegranskat) Accepted
Nationell ämneskategori
Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-259407 (URN)
Tillgänglig från: 2015-08-03 Skapad: 2015-08-03 Senast uppdaterad: 2017-12-04
7. Tell the truth but leave room for hope - Children with cancer share their views on receiving bad news
Öppna denna publikation i ny flik eller fönster >>Tell the truth but leave room for hope - Children with cancer share their views on receiving bad news
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(Engelska)Manuskript (preprint) (Övrigt vetenskapligt)
Nationell ämneskategori
Pediatrik
Identifikatorer
urn:nbn:se:uu:diva-259408 (URN)
Tillgänglig från: 2015-08-03 Skapad: 2015-08-03 Senast uppdaterad: 2015-10-01

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