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Distress among Adolescents with Cancer
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
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. , p. 61
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 18
Keywords [en]
Caring sciences, adolescents, anxiety, cancer, children, depression, distress, staff ratings, positive experiences, well-being
Keywords [sv]
Vårdvetenskap
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-4832ISBN: 91-554-6176-X (print)OAI: oai:DiVA.org:uu-4832DiVA, id: diva2:165916
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
List of papers
1. Distressing events for children and adolescents with cancer: Child, parent, and nurse perceptions
Open this publication in new window or tab >>Distressing events for children and adolescents with cancer: Child, parent, and nurse perceptions
2003 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 20, no 3, p. 120-132Article 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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-64356 (URN)10.1053/jpon.2003.76 (DOI)12776260 (PubMedID)
Available from: 2008-10-17 Created: 2008-10-17 Last updated: 2017-11-30
2. Distressing and positive experiences and important aspects of care for adolescents treated for cancer: adolescent and nurse perceptions
Open this publication in new window or tab >>Distressing and positive experiences and important aspects of care for adolescents treated for cancer: adolescent and nurse perceptions
2004 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 8, no 1, p. 6-17Article 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.

Keywords
Adolescent; Cancer; Care; Experiences; Nurse
National Category
Nursing Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-92730 (URN)10.1016/j.ejon.2003.09.001 (DOI)
Available from: 2005-03-30 Created: 2005-03-30 Last updated: 2017-12-14
3. Perceptions of distress among adolescents recently diagnosed with cancer
Open this publication in new window or tab >>Perceptions of distress among adolescents recently diagnosed with cancer
2005 (English)In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 27, no 1, p. 15-22Article 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.

Keywords
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:nbn:se:uu:diva-70327 (URN)15654273 (PubMedID)
Available from: 2007-03-26 Created: 2007-03-26 Last updated: 2017-11-21
4. Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer
Open this publication in new window or tab >>Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer
Show others...
2006 (English)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 46, no 7, p. 773-9Article in journal (Refereed) Published
Abstract [en]

Background. As staff members prioritize medical resources forpatients, it is imperative to find out whether their assessments ofpatients’ health status agree with patients’ assessments. The degree towhich physicians and nurses can identify the distress, anxiety, anddepression experienced by adolescents recently diagnosed withcancer was examined here. Procedure. Adolescents undergoingchemotherapy (13–19 years, n¼53), physicians (n¼48), and nurses(n¼53) completed a structured telephone interview, 4–8 weeksafter diagnosis or relapse, investigating disease and treatment-relateddistress, anxiety, and depression. Results. The accuracy of staffratings of physical distress could be considered acceptable.However, problems of a psychosocial nature, which were frequentlyoverestimated, were difficult for staff to identify. Staff underestimatedthe distress caused by mucositis and worry about missing schoolmore than they overestimated distress. These aspects were some ofthe most prevalent and overall worst according to the adolescents.Both physicians and nurses overestimated levels of anxiety anddepression. Nurses tended to show higher sensitivity than physiciansfor distress related to psychosocial aspects of distress, whilephysicians tended to show higher accuracy than nurses for physicaldistress. Conclusions. Staff was reasonably accurate at identifyingphysical distress in adolescents recently diagnosed with cancerwhereas psychosocial problems were generally poorly identified.Thus, the use of staff ratings as a ‘‘test’’ to guide specific supportseems problematic. Considering that the accuracy of staff ratingsoutside a research study is probably lower, identification of andaction taken on adolescent problems in relation to cancer diagnosisand treatment need to rely on direct communication.

Keywords
Adolescent, Adult, Anxiety/*diagnosis/epidemiology/etiology, Comparative Study, Depression/*diagnosis/epidemiology/etiology, Female, Health Status, Humans, Male, Middle Aged, Neoplasms/complications/*psychology, Nurses, Observer Variation, Physicians, Prevalence, Research Support; Non-U.S. Gov't, Self Assessment (Psychology), Sensitivity and Specificity, Stress; Psychological/*diagnosis/epidemiology/etiology, Sweden/epidemiology
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-19352 (URN)10.1002/pbc.20693 (DOI)16333833 (PubMedID)
Available from: 2008-06-24 Created: 2008-06-24 Last updated: 2017-12-08

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