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  • 1. Boman, Krister K
    et al.
    Bodegård, Göran
    Life after cancer in childhood: social adjustment and educational and vocational status of young-adult survivors2004In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 26, no 6, p. 354-62Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To evaluate the long-term social effect of illness and its treatment on young-adult survivors of pediatric cancer by addressing a selection of general social adjustment criteria.

    METHODS: In a cross-sectional case-control study, 30 young-adult survivors of childhood cancer were compared with (1). controls with no history of serious illness, matched by sex, age, and geographic area of residence, and (2). general population norms on the subject of educational and vocational factors, habitation, family/partner relationships, parenthood, and leisure activities.

    RESULTS: The educational status of survivors was similar to that of controls, although a smaller proportion of the patients expressed concrete plans for future vocational or educational advancement. Survivors had less frequently entered higher education compared with general population norms. A longer duration of treatment was related to a lower estimated socioeconomic level, and poor psychological coping with the illness experience was associated with the fact that they were still living with their parents, a shorter education, and a lower socioeconomic level.

    CONCLUSIONS: The social, vocational, and educational adjustment of relapse-free survivors from childhood cancer appears as only moderately, if at all, negatively affected by the illness and treatment history. However, the treatment intensity and particularly the survivors' coping with their illness experience may influence their ability to achieve long-term social goals. These findings suggest that special attention should be given to matters concerning education and partner relationships at long-term follow-up of pediatric cancer patients.

  • 2. Dale, D C
    et al.
    Liles, W C
    Garwicz, Daniel
    University of Washington, Dept Med, Seattle, USA.
    Aprikyan, A G
    Clinical implications of mutations of neutrophil elastase in congenital and cyclic neutropenia2001In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 23, no 4, p. 208-210Article in journal (Refereed)
  • 3.
    Hedström, Mariann
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Perceptions of distress among adolescents recently diagnosed with cancer2005In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 27, no 1, p. 15-22Article in journal (Refereed)
    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.

  • 4. Hovén, Emma
    et al.
    Anclair, Malin
    Samuelsson, Ulf
    Kogner, Per
    Boman, Krister K
    The influence of pediatric cancer diagnosis and illness complication factors on parental distress2008In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 30, no 11, p. 807-14Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: We investigated how primary diagnosis and risk for diagnosis-related complication factors influence parental distress after a child's cancer diagnosis.

    METHODS: We used a model in which "complicated childhood cancers" were grouped into 1 category, after identifying a set of potentially influential illness complication variables. This category included central nervous system tumors, acute myeloid leukemia, and bone tumors. Parental distress in that category (n=144) was compared with distress after acute lymphoblastic leukemia (n=177) in the child. In addition, comparisons were made between parents of the specific diagnosis groups. A multidimensional questionnaire assessing symptoms of distress was used.

    RESULTS: Parents in the complicated cancer category showed significantly heightened disease-related fear, anxiety, depression, loss of control, late effects-related uncertainty, and poorer self-esteem compared with parents of children with acute lymphoblastic leukemia. Significantly heightened parental distress was associated with the child having been treated with cranial irradiation.

    CONCLUSIONS: Relatively heightened distress in parents of children with complicated cancer is influenced by diagnosis-related factors like an intricate prediagnostic phase, and uncertainty about late effects. Heightened vulnerability to distress signals exceptional needs for support and information among parents of children treated for central nervous system or bone tumors.

  • 5.
    Norberg, Annika Lindahl
    Karolinska institutet, Inst f kvinnors och barns hälsa.
    Parents of children surviving a brain tumor: burnout and the perceived disease-related influence on everyday life.2010In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 32, no 7, p. e285-9Article in journal (Refereed)
    Abstract [en]

    Parents of children diagnosed with a brain tumor often report distress, even after successfully completed cancer treatment. The aim of this study was to examine predictors of burnout (ie stress-induced exhaustion) in parents of children who have had a brain tumor. Twenty-four mothers and 20 fathers completed self-report questionnaires on 2 occasions at an interval of 7 months. Controlling for generic stress, parents' perception of the influence of the disease on everyday life-predicted burnout symptoms. Moreover, parents' appraisal of a disease-related influence on everyday life showed stability, implying that parental stress may be chronic. The findings encourage furthermore investigation of chronic stress among parents of children diagnosed with cancer.

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