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Perceptions of support among Swedish parents of children on cancer 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. (Psychosocial oncology and supportive care)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. (Psychosocial oncology and supportive care)
2009 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 4, 350-357 p.Article in journal (Refereed) Published
Abstract [en]

Given the important role of parents in ensuring the well-being of their children, their perceived support is crucial for their own, as well as their child's well-being. Perceptions of support were investigated among 214 Swedish parents of 115 children on cancer treatment. Parents answered questions about their satisfaction with their child's care (The Comprehensive Satisfaction with Care, Short Form, Version 4.0 (CASC SF 4.0)) and about their need, opportunity and benefit to talk to health professionals, significant others and other people. Data were collected over telephone at 1 week (T1), 2 (T2) and 4 (T3) months after the child's diagnosis. Parents reported at least moderate satisfaction with all aspects of their child's care, and highest satisfaction with the technical care. Less than half of the parents who reported a need to talk with a psychologist at T1-T3 reported having had the opportunity to do so. The care organization, doctors' interpersonal skills, information provision and availability, nurses' information provision and the availability of psychologists are areas within Swedish paediatric oncology care for which improvement most obviously is needed.

Place, publisher, year, edition, pages
2009. Vol. 18, no 4, 350-357 p.
Keyword [en]
parents, oncology, satisfaction with care, support, childhood cancer
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-100568DOI: 10.1111/j.1365-2354.2008.00935.xISI: 000267538700005PubMedID: 19040459OAI: oai:DiVA.org:uu-100568DiVA: diva2:211033
Note
Published Online: 27 Nov 2008Available from: 2009-04-07 Created: 2009-04-02 Last updated: 2017-12-13Bibliographically 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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