Distrust in the end-of-life care provided to a parent and long-term negative outcomes among bereaved adolescents: A population-based survey study

Research output: Contribution to journalReview article


Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children’s distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons’ and daughters’ distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire–9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.


  • Kim Beernaert
  • Ulrika Kreicbergs
  • Carl Johan Fürst
  • Tommy Nyberg
  • Gunnar Steineck
  • Tove Bylund-Grenklo
External organisations
  • Vrije Universiteit Brussel (VUB)
  • Ersta Sköndal Bräcke University College
  • Karolinska Institutet
  • University of Cambridge
  • Sahlgrenska Academy
  • Linnaeus University
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Health Care Service and Management, Health Policy and Services and Health Economy
Original languageEnglish
Pages (from-to)3136-3142
JournalJournal of Clinical Oncology
Issue number27
Publication statusPublished - 2017 Sep 20
Publication categoryResearch