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Distressing events for children and adolescents with cancer: Child, parent, and nurse perceptions
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.ORCID iD: 0000-0001-6296-0160
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
2003 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 20, no 3, 120-132 p.Article in journal (Refereed) Published
Abstract [en]

Distressing events for children with cancer (N = 121), 0 to 19 years of age, were investigated. Data were gathered through interviews with 50 children, 65 parents, and 118 nurses. Each participant was asked: "Has there been any especially distressing event for you/your child/the child with regard to disease and treatment?" Data were analyzed by content analysis. The categories that emerged from the analysis were grouped into a physical and an emotional dimension. The most frequently mentioned aspects of distress referred to the physical dimension: pain resulting from diagnostic procedures and treatments, nausea, and fatigue. The most frequently mentioned physical aspect of distress was, for children 0 to 3, 4 to 7, and 8 to 12 years of age, pain resulting from diagnostic procedures and treatments, and for children > or =13 years of age, nausea. The most frequently mentioned aspects of distress referred to the emotional dimension were categorized as confinement, feeling of alienation, and worry before medical procedures. The most frequently mentioned emotional aspect of distress was, for children 0 to 3 years of age, confinement; 4 to 7 years of age, feeling of alienation; 8 to 12 years of age, worry about death; and > or =13 years of age, changed appearance. For children 0 to 3, 4 to 7, and > or =13 years of age, aspects of distress of a physical character were mentioned most frequently. For children 8 to 12 years of age, aspects of distress of an emotional character were mentioned most frequently.

Place, publisher, year, edition, pages
2003. Vol. 20, no 3, 120-132 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-64356DOI: 10.1053/jpon.2003.76PubMedID: 12776260OAI: oai:DiVA.org:uu-64356DiVA: diva2:92267
Available from: 2008-10-17 Created: 2008-10-17 Last updated: 2017-11-30
In thesis
1. Distress among Adolescents with Cancer
Open this publication in new window or tab >>Distress among Adolescents with Cancer
2005 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The primary aim was to investigate the distress perceived by adolescents with cancer treated in paediatric oncology. In Study I, especially distressing events for children/adolescents with cancer were identified by interviews with children/adolescents/parents and nurses. Data were analysed with content analysis. A range of physical and emotional concerns was identified. Physical concerns are of a rather similar nature across age groups. Emotional concerns vary more between age groups. For children 8-12 years, emotional concerns are rather frequent. In Study II distressing and positive aspects related to some care situations for adolescents with cancer were identified by interviews with adolescents and nurses. Data were analysed with content analysis. A range of negative aspects, e.g. fear of alienation, fear of dying, altered appearance and physical concerns, as well as positive aspects, e.g. positive relations to staff and being well cared for were identified.

The aspects of distress identified in Studies I and II formed the basis for a structured interview-guide, used in Studies III and IV. Adolescents, recently diagnosed with cancer, physicians and nurses were interviewed by telephone about distress, anxiety, depression and well-being experienced by the adolescents. Adolescent ratings of prevalence, levels and worst aspects of distress do not necessarily agree, however, worry missing school and mucositis are among those rated with the highest prevalence, levels and those perceived as the overall worst. The findings from Study IV demonstrate that physicians and nurses underestimate the distress caused by worry missing school and mucositis. The accuracy of physician and nurse ratings of physical distress is acceptable, however, this is not the case for psychosocial distress. It can be concluded that it is crucial to consider how questions are asked when interpreting the significance of the answers, and that action on adolescent problems in relation to cancer diagnosis and treatment need to rely on direct communication.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2005. 61 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 18
Keyword
Caring sciences, adolescents, anxiety, cancer, children, depression, distress, staff ratings, positive experiences, well-being, Vårdvetenskap
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-4832 (URN)91-554-6176-X (ISBN)
Public defence
2005-04-21, Aulan, Döbelnsgatan 2, Uppsala, 13:15 (English)
Opponent
Supervisors
Available from: 2005-03-30 Created: 2005-03-30 Last updated: 2009-06-02Bibliographically approved

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Hedström, MariannVon Essen, Louise

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