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Distressing and positive experiences and important aspects of care for adolescents treated for cancer: adolescent and nurse perceptions
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, 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, Caring Sciences.
2004 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 8, no 1, 6-17 p.Article in journal (Refereed) Published
Abstract [en]

Distressing and positive experiences for adolescents with cancer with regard to being told the diagnosis, receiving chemotherapy and being admitted to the ward, and important aspects of care for adolescents with cancer was investigated. Data were gathered through semi-structured interviews with 23 adolescents and 21 nurses, and analysed by content analysis. The findings indicate that cancer during adolescence is connected with a range of negative experiences such as fears of alienation, fears of altered appearance, fears of dying, and various physical concerns. Positive experiences include positive relations to staff and being well cared for. Important care for adolescents treated for cancer consists mainly of meeting nice, friendly, supportive, and competent staff, who provide them with age-appropriate information. The findings indicate that adolescents with cancer experience a range of negative and positive experiences related to disease and treatment and that good care for adolescents with cancer is a broad, complex, and multidimensional phenomenon.

Place, publisher, year, edition, pages
2004. Vol. 8, no 1, 6-17 p.
Keyword [en]
Adolescent; Cancer; Care; Experiences; Nurse
National Category
Nursing Cancer and Oncology
Identifiers
URN: urn:nbn:se:uu:diva-92730DOI: 10.1016/j.ejon.2003.09.001OAI: oai:DiVA.org:uu-92730DiVA: diva2:165913
Available from: 2005-03-30 Created: 2005-03-30 Last updated: 2017-12-14
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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