title: A comprehensive study of the distressing experiences and support needs of parents of children with intractable cancer.
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-to-date 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.
authors.affiliation: Center for Cancer Control and Information Services, National Cancer Center, Chuo-ku, Tokyo saryoshi@ncc.go.jp.
authors.forename: Saran
authors.initials: S
authors.lastname: Yoshida
authors.affiliation: Department of Clinical Laboratory, Seirei Mikatahara General Hospital, Hamamatsu City, Shizuoka.
authors.forename: Koji
authors.initials: K
authors.lastname: Amano
authors.affiliation: Department of Pediatrics, Higashitoyonaka Watanabe Hospital, Toyonaka City, Osaka.
authors.forename: Hideaki
authors.initials: H
authors.lastname: Ohta
authors.affiliation: Child Chemo Clinic, Kobe City, Hyogo.
authors.forename: Shigenori
authors.initials: S
authors.lastname: Kusuki
authors.affiliation: Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu City, Shizuoka.
authors.forename: Tatsuya
authors.initials: T
authors.lastname: Morita
authors.affiliation: Graduate School of Education, Hiroshima University, Higashi-Hiroshima City, Hiroshima.
authors.forename: Akiko
authors.initials: A
authors.lastname: Ogata
authors.affiliation: Support Office for Large-Scale Education and Research Projects, Osaka University, Suita City, Osaka, Japan.
authors.forename: Kei
authors.initials: K
authors.lastname: Hirai
mesh_terms: D001007:Anxiety; D002648:Child; D002675:Child, Preschool; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms; D010290:Parents; D013315:Stress, Psychological; D011795:Surveys and Questionnaires
keywords: Japan; intractable cancer; parents; support need