Experiences of Parents and General Practitioners with End-of-Life Care in Adolescents and Young Adults with Cancer

J Adolesc Young Adult Oncol. 2016 Mar;5(1):64-8. doi: 10.1089/jayao.2015.0009. Epub 2015 Dec 1.


This study aims to analyze the experiences of Dutch bereaved parents and general practitioners (GPs) with palliative care of AYAs (18-35 years) in the terminal stage. Fifteen parents and nine GPs involved with nine deceased AYAs filled out questionnaires and were interviewed by telephone, respectively. In general, the parents were satisfied with the emotional care they themselves received and the medical care that their child received. The GPs were very satisfied with the cooperation with the palliative team. Gaps are present in the areas of symptom control, communication between hospital professionals and parents, aftercare, and transition between hospital and GP.

Keywords: end-of-life; palliative care.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Attitude of Health Personnel
  • Attitude to Health*
  • Communication
  • Female
  • General Practitioners / psychology*
  • Hospice Care / standards
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / psychology
  • Neoplasms / therapy*
  • Netherlands
  • Palliative Care / standards
  • Parents / psychology*
  • Patient Care Team / standards
  • Psychometrics
  • Quality of Health Care
  • Social Support
  • Terminal Care / standards*
  • Young Adult