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Perceptions of distress among adolescents recently diagnosed with cancer
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 Women's and Children's Health. (Barnonkologisk forskning/Lönnerholm)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences. (Caring Sciences)
2005 (English)In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 27, no 1, 15-22 p.Article in journal (Refereed) Published
Abstract [en]

With the goal of studying perceived distress among adolescents recently diagnosed with cancer, 56 adolescents were interviewed by telephone 4 to 8 weeks after diagnosis. The interviews included a structured interview guide, the Hospital Anxiety and Depression Scale, and the subscales Mental Health and Vitality from SF-36. "Losing hair" and "missing leisure activities" were identified as the most prevalent aspects of distress, whereas "missing leisure activities" and "fatigue" were rated with the highest levels of distress. "Worry about not getting well," "mucositis," "nausea," "pain from procedures and treatments," and "worry about missing school" were rated as the overall worst aspects by most adolescents. Twelve percent reached the cutoff score for potential clinical anxiety and 21% for potential clinical depression. Ratings of Mental Health and Vitality were lower than norm values. Prevalence of pain from procedures/treatments was higher among those who scored in the clinical range of depression, and more adolescents who were treated at a local hospital scored in the clinical range of anxiety. The findings show that ratings of prevalence, levels, and aspects perceived as the worst are not necessarily in accordance, that adolescents scoring in the clinical range of psychological distress are in the minority, and that the adolescents experience reduced physical and mental well-being.

Place, publisher, year, edition, pages
2005. Vol. 27, no 1, 15-22 p.
Keyword [en]
Adaptation; Psychological, Adolescent, Anxiety/*epidemiology/psychology, Depression/epidemiology/psychology, Female, Humans, Male, Neoplasms/*psychology, Prevalence, Psychiatric Status Rating Scales, Research Support; Non-U.S. Gov't, Stress; Psychological/epidemiology/etiology
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-70327PubMedID: 15654273OAI: oai:DiVA.org:uu-70327DiVA: diva2:98238
Available from: 2007-03-26 Created: 2007-03-26 Last updated: 2017-11-21
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, MariannLjungman, Gustafvon Essen, Louise

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