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- Enskär, Karin
(författare)
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Assessing the life situation of children and adolescents with cancer and their families
- 1997
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In recent decades, more children have been cured of cancer due to research development and intensification of treatment. Having a life-threatening disease, like cancer, during childhood effects both the child and the family. It is important for the staff working with those families to know what is distressing in order to provide appropriate care. The aim of this thesis was to develop instruments to assess the life situation of children with cancer and their families. First, the health care personnel's (n=24) perception of problems and symptoms caused by the disease were identified. An inquiry of Delphi-technique type was used. The results gave two Lists of Problems (LoP), one with 84 problems concerning the child, and one with 69 problems concerning the rest of the family. In the next study, using qualitative interviews, children's (n~5), adolescents' (n~10) and parents' (n~16) own experience of problems related to the disease and its perceived effect on their life situation were investigated. The result from those studies formed the basis for the three scales developed in the study, the Life Situation Scales for Children 7-12 years old (LSS-C), for Adolescents 13-19 years old (the LSS-A) and for Parents (the LSS-P). A new group of children (n~15), adolescents (n~21) with cancer and their parents (n~llO) answered one of the three questionnaires. The psychometric tests of the first version of the life situation scales gave some evidence of validity and reliability. However the scales for children and adolescents, in particular, need to be tested on larger samples. The study indicated how to proceed with futher development, as the methods used seemed to be adequate. After further development the tools could be used in research and clinical care evaluations.
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