The development of the clinical assessment tool "Health and Everyday Functioning in Young Children with Cancer".

Abstract

Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer. A comprehensive set of ICF-CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF-CY codes. The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care." The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF-CY could be used to guide the delivery of care towards living an everyday life with a long-term illness.