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

Beernaert, Kim; Kreicbergs, Ulrika; Fürst, Carl Johan LU ; Nyberg, Tommy; Steineck, Gunnar and Bylund-Grenklo, Tove (2017) In Journal of Clinical Oncology 35(27). p.3136-3142
Abstract

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... (More)

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.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Journal of Clinical Oncology
volume
35
issue
27
pages
3136 - 3142
publisher
American Society of Clinical Oncology
external identifiers
  • scopus:85029685358
  • wos:000410726800009
ISSN
0732-183X
DOI
10.1200/JCO.2017.72.9814
language
English
LU publication?
yes
id
d1e24cdb-35f5-4e30-98e0-8d94a87e88d5
date added to LUP
2017-10-11 16:40:58
date last changed
2018-01-16 13:22:53
@article{d1e24cdb-35f5-4e30-98e0-8d94a87e88d5,
  abstract     = {<p>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.</p>},
  author       = {Beernaert, Kim and Kreicbergs, Ulrika and Fürst, Carl Johan and Nyberg, Tommy and Steineck, Gunnar and Bylund-Grenklo, Tove},
  issn         = {0732-183X},
  language     = {eng},
  month        = {09},
  number       = {27},
  pages        = {3136--3142},
  publisher    = {American Society of Clinical Oncology},
  series       = {Journal of Clinical Oncology},
  title        = {Distrust in the end-of-life care provided to a parent and long-term negative outcomes among bereaved adolescents : A population-based survey study},
  url          = {http://dx.doi.org/10.1200/JCO.2017.72.9814},
  volume       = {35},
  year         = {2017},
}