21 research outputs found

    Experiences of parents with caring for their child after a cancer diagnosis

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    Children and adolescents with cancer are increasingly treated and cared for at home; hospital stays are reduced to a minimum. Taking care of a sick child at home has an impact on the entire family: the sick child, the siblings, and the parents. This qualitative study examines the experiences of parents taking their child home for the first time after the diagnosis. Parents of 10 children newly diagnosed with cancer were interviewed twice around the time of the first discharge; data were analyzed using content analysis methodology. Findings illustrated parents' preparation of and experiences around their child's first discharge, the huge amount of new and changed tasks parents have to fulfill at home when caring for their child with cancer, and consequences for the parents. By providing individualized information and instruction, by having parents anticipate potential problems and solutions, and by describing available community support and integrating district nurses as well as other parents with the same experiences more frequently, health care professionals in the hospital can optimize discharge planning for these parents

    Predicting additional care in young children with neurodevelopmental disability: a systematic literature review

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    Children with developmental disabilities often show a variety of associated impairments that lead to a lifelong need for additional care. Careful assessment of these impairments is required not only for diagnostic purposes but also to inform the parents about the expected additional care needs in the future. We present a systematic review of the literature to identify instruments that classify the type and amount of this care for the individual child. A literature search was performed in the Medline database (January 1966 - June 2005) on instruments that classify the type and amount of expected additional care needs in the future. Seven standardized measurement instruments describing current additional care needs were identified, but none of these instruments was developed to provide information about the expected need for additional care in the future. For parents of young children with non-progressive developmental disorders it is essential to be informed on the expectations of required additional care in the future. However, comprehensive instruments providing such information are currently lacking and, thus, need to be developed
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