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Parents’ and children’s perceptions of distressrelated to oral mucositis during hematopoietic stem cell transplantation
Uppsala Univ, Dept Womens & Childrens Hlth, Uppsala, Sweden.
Uppsala Univ, Dept Womens & Childrens Hlth, Uppsala, Sweden.
Uppsala Univ, Dept Med Sci, Uppsala, Sweden.ORCID iD: 0000-0003-2960-4994
Uppsala Univ, Dept Publ Hlth & Caring Sci, Uppsala, Sweden.
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2013 (English)In: Acta Paediatrica, ISSN 0803-5253, Vol. 103, no 6, 630-636 p.Article in journal (Refereed) Published
Abstract [en]

Aim

Oral mucositis is a common and debilitating side effect of haematopoietic stem cell transplantation. Our study investigated parents' and children's experiences of oral mucositis treatment and whether the parents' perceptions accurately reflected the children's views.

Methods

We analysed 71 questionnaires completed by the parents of children who had undergone haematopoietic stem cell transplantation, together with 38 questionnaires completed by children who were 7 years of age or over.

Results

The parent proxy and child self-reports showed good to excellent agreement. For example, 86% of the parents and 83% of the children reported oral pain and 44% of the parents and 47% of the children reported difficulty swallowing often or very often. The majority of the parents (61%) were satisfied with the pain treatment that had been given to their child. However, the treatment provided for oral mucositis was not altogether consistent.

Conclusion

Oral mucositis affected the majority of the children undergoing haematopoietic stem cell transplantation, causing considerable pain and discomfort. The parent proxy reports proved to be reliable and are an important supplement to child self-reports on symptoms related to oral mucositis. But there is a clear need to establish more evidence-based care for children suffering from oral mucositis.

Place, publisher, year, edition, pages
John Wiley & Sons, 2013. Vol. 103, no 6, 630-636 p.
Keyword [en]
Haematopoietic stem cell transplantation; Oral mucositis; Pain; Parent proxy; Questionnaire
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:du-15526DOI: 10.1111/apa.12627ISI: 000335754700020PubMedID: 24612395OAI: oai:DiVA.org:du-15526DiVA: diva2:746309
Available from: 2014-09-12 Created: 2014-09-12 Last updated: 2016-01-04Bibliographically approved

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CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • chicago-author-date
  • chicago-note-bibliography
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf