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The provision of information in children's cancer care: a sufficiency or a surfeit?
  1. S Rintoul-Hoad1,2,
  2. R Wheeler1,3
  1. 1Wessex Paediatric Oncology Centre (Piam Brown Ward), Southampton General Hospital, Southampton, UK
  2. 2School of Medicine, Southampton University Hospitals NHS Trust, Southampton, UK
  3. 3Department of Paediatric Surgery, Southampton General Hospital, Southampton, UK

Abstract

Aims The aim of this study was to examine and evaluate the information provided to children with cancer. There are studies examining adults' behaviour and preferences for information on cancer; but the information requirements of children are less understood. Few studies have looked at whether the provision of information is sufficient for their needs; or if there is an overprovision of written information, which may confuse rather than inform and could represent a waste of resources.

Method The first aspect was objectively to consider if existing written material for families was sufficient and whether there was duplication. The second was to interview professionals who provide information. The third aspect involved a questionnaire-led interview to understand parent and child's information-seeking behaviour and to ascertain whether they felt the information was sufficient for their needs. Seventy families attending our paediatric oncology ward from October 2008 to March 2009 were invited to take part.

Results 68% (n=65) of printed leaflets available on the ward contained information that was repeated elsewhere in other leaflets. Additionally, 58% (n=37) of parents had noticed repetition; although 75% (n=47) found repeated written information helpful and only a minority, 19% (n=12) found it conflicting or 18% (n=11) confusing. Only 9% (n=5) of children noticed repeated written information; perhaps due to 67% (n=26) of children, regardless of age, preferring “mainly spoken” information and only 16% (n=10) read all leaflets given to them. The professionals interviewed acknowledged the quantity, but not necessarily quality, of written information available. The majority of parents and children reported having “plenty” or “enough” written and verbal information for each stage of their treatment and were “very satisfied” with what they had received.

Conclusion Information provision is sufficient, as indicated by high levels of patient satisfaction. However, there is evidence of a surplus of printed information for parents; yet parents appear to welcome the repetition, indicating that in this situation, a “surfeit” is not wasteful. Information for children is perhaps not as plentiful. While the children's use of written information varied with age it is unlikely that more is needed, because verbal communication was the key to explanation of their diagnosis and treatment.

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