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Parents' Perceptions of Their Children's Cancer-Related Symptoms During Treatment: A Prospective, Longitudinal Study
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health. (Barnonkologisk forskning/Pfeifer)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
2010 (English)In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 40, no 5, 661-670 p.Article in journal (Refereed) Published
Abstract [en]

CONTEXT: This article describes a comprehensive assessment of treatment-related symptoms in children aged 0-18 years undergoing cancer treatment from the perspective of their parents. OBJECTIVES: The aim was to describe which symptoms that, according to parents, cause most problems for children receiving cancer treatment and to explore whether there is a relationship between parents' ratings of their children's symptoms and their own posttraumatic stress at one week (T1), two months (T2), and four months (T3) after a child's cancer diagnosis. METHODS: In total, 214 parents (107 mothers and 107 fathers) of 115 children answered a modified version of the Memorial Symptom Assessment Scale 10-18 and the PTSD Checklist Civilian Version over the telephone at T1-T3. RESULTS: According to parents, the following symptom areas cause the most problems for children undergoing cancer treatment: emotional distress, fatigue, nutrition, and pain. Pain is the most problematic area. The prevalence of most symptoms and the symptom burden decreases over time. Parents' ratings of their children's symptom burden and their own emotional distress, and mothers' and fathers' ratings of their child's symptom burden, are associated. Parents of adolescents report a greater symptom burden for their child than the parents of the youngest children. CONCLUSION: The opinions of both the patient and the parent are important in pediatrics. The results of this study can be used to guide health care professionals within pediatric oncology in their discussions of cancer treatment's adverse effects with patients and families. Not only the expectations and potential interventions but also the sources of worry should be discussed.

Place, publisher, year, edition, pages
2010. Vol. 40, no 5, 661-670 p.
Keyword [en]
Parents, childhood cancer, symtoms
National Category
Medical and Health Sciences Nursing
Identifiers
URN: urn:nbn:se:uu:diva-97227DOI: 10.1016/j.jpainsymman.2010.02.012ISI: 000284671400003PubMedID: 20678894OAI: oai:DiVA.org:uu-97227DiVA: diva2:172067
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2017-12-14Bibliographically approved
In thesis
1. Posttraumatic stress among parents of children on cancer treatment: support, care and distress
Open this publication in new window or tab >>Posttraumatic stress among parents of children on cancer treatment: support, care and distress
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The main aim of this thesis was to longitudinally investigate the potential occurrence of posttraumatic stress disorder (PTSD) among parents of children on cancer treatment (Study I). Additional aims were to describe parents’ perceptions of emotional support and satisfaction with the child’s care (II), perceptions of the child’s symptom burden (III), and parents’ stories about having a child on cancer treatment (IV). The design was prospective, longitudinal, and data was collected at: one week, two months, and four months after the child’s diagnosis and one week/six months after the end of successful treatment/transplantation. Parents (N=259) were consecutively included during the years 2002-2004 and answered questionnaires and open-ended questions over the telephone. Parenting a child with cancer is a very demanding, potentially traumatic, event. Approximately a fourth of the parents report symptoms corresponding to PTSD. The symptom level is related to being a mother, not working before the child’s diagnosis, and to previous trauma experience. Less than half of those who report a need to talk with a psychologist report having had the opportunity to do so. Parents are generally satisfied with the care and report the highest satisfaction with the technical care. Emotional distress, fatigue, nutrition, and pain are, according to parents, the most problematic symptom areas for their children. Pain is identified as especially problematic. Parents in paediatric oncology care should be acknowledged as potential care-recipients. In order to prevent development of PTSD parents of children on cancer treatment should be supported to maintain an ordinary life, for example pursue work and/or activities, and to get sufficient rest. As a means towards this parents need help with e.g. household duties and childcare. In addition to this, parents in approximately two fifths of the families need extended psychosocial support aiming at reducing posttraumatic stress.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2008. 56 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 354
Keyword
Caring sciences, posttraumatic stress, PTSD, symptoms, emotional support, satisfaction, childhood cancer, parents, Vårdvetenskap
Identifiers
urn:nbn:se:uu:diva-8745 (URN)978-91-554-7204-7 (ISBN)
Public defence
2008-05-28, Auditorium Minus, Gustavianum, Akademigatan 3, Uppsala, 09:00 (English)
Opponent
Supervisors
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2009-06-02Bibliographically approved

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Pöder, Ulrikavon Essen, Louise

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Psychosocial oncology and supportive careCaring SciencesDepartment of Women's and Children's Health
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