A comprehensive study of the distressing experiences and support needs of parents of children with intractable cancer

Saran Yoshida, Koji Amano, Hideaki Ohta, Shigenori Kusuki, Tatsuya Morita, Akiko Ogata, Kei Hirai

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)

Abstract

Objective: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they regarded as necessary. Methods: A multi-center questionnaire survey was conducted that included 135 bereaved parents of patients with pediatric cancer in Japan. Results: The top five distressing experiences shared by over half of the bereaved parents were: 'Realize that the child's disease was getting worse' (96.7%), 'Witness the child's suffering' (96.7%), 'Make many decisions on the basis that the child will die in the not-so-distant future' (83.6%), 'Feel anxious and nervous about the child's acute deterioration' (82.0%) and 'Realize that there was nothing that I could do for the child' (78.7%). The top five support regarded as necessary were: 'Visit the room and speak to the sick child every day' (90.2%), 'Provide up-todate information' (80.3%), 'Sufficiently explain the disadvantages of each treatment option' (80.3%), 'Show a never-give-up attitude until the end' (78.7%) and 'Make arrangements to allow the sick child to spend time with his/her siblings' (73.8%). Conclusions: This study identified the common distressing experiences of parents and the support regarded as necessary by them. To provide efficient support with limited manpower in pediatric setting, healthcare professionals should recognize these tasks as high priorities when engage parents of intractable pediatric cancer patients.

Original languageEnglish
Pages (from-to)1181-1188
Number of pages8
JournalJapanese journal of clinical oncology
Volume44
Issue number12
DOIs
Publication statusPublished - 2014 Dec 1
Externally publishedYes

Keywords

  • Intractable cancer
  • Japan
  • Parents
  • Support need

ASJC Scopus subject areas

  • Oncology
  • Radiology Nuclear Medicine and imaging
  • Cancer Research

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