44 How can children with cancer tell us about their care? piloting the children's cancer experience measure app. (22nd November 2019)

• Record Type: Journal Article
• Authors: Sweet, Rebecca; Walker, Kirsten; Gibson, Faith
• Is Part Of: Archives of disease in childhood. Volume 104:(2019)Supplement 4
• Page Start: A18
• Page End: A19
• Publication Date: 2019-11-22
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2019-gosh.44
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Background: There is a lack of validated measures for young children with cancer that captures their views of hospital care. A multi-professional working group developed a measure for children aged 4-12 years to report their experience of being in hospital. This Child Cancer Experience Measure, has been adapted into a digital application consisting of five interactive sections: physical environment, social environment, interactions, treatment and feelings. Aims: To pilot a measure for young children with cancer to feedback their experience of the cancer service. Methods: The measure was piloted for two months during 2018 by two data collectors: one supported the children to complete the app, whilst the second recorded the child's responses. Children being treated on the inpatient and daycare wards were invited to participate and share their views on the app. Results/Findings: We approached 169 children, of which 22 children aged 4-11, participated. Children gave feedback on all five areas covered by the app. Results were summarised with descriptive statistics, reporting on children's likes, e.g. having things explained, and dislikes, e.g. lights and noise preventing sleep. Most participants fed back that they enjoyed the app and appreciated its interactive nature. Some struggled with star ratings and some found it too long. Implications: Even young children were able to use the app to share their patient experiences, highlighting practical service changes that could be implemented based on their feedback. Although the app would benefit from minor adjustments, it is proving to be an effective approach that could be used at cancer centres nationally.