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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

(2017) JOURNAL OF CLINICAL ONCOLOGY. 35(27). p.3136-3142
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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 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.
Keywords
TRUST, DEATH, SUICIDE, DEPRESSION, CHILDHOOD, YOUTH

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Chicago
Beernaert, Kim, Ulrika Kreicbergs, Carl Johan Fürst, Tommy Nyberg, Gunnar Steineck, and Tove Bylund-Grenklo. 2017. “Distrust in the End-of-life Care Provided to a Parent and Long-term Negative Outcomes Among Bereaved Adolescents : a Population-based Survey Study.” Journal of Clinical Oncology 35 (27): 3136–3142.
APA
Beernaert, K., Kreicbergs, U., Fürst, C. J., Nyberg, T., Steineck, G., & Bylund-Grenklo, T. (2017). Distrust in the end-of-life care provided to a parent and long-term negative outcomes among bereaved adolescents : a population-based survey study. JOURNAL OF CLINICAL ONCOLOGY, 35(27), 3136–3142.
Vancouver
1.
Beernaert K, Kreicbergs U, Fürst CJ, Nyberg T, Steineck G, Bylund-Grenklo T. Distrust in the end-of-life care provided to a parent and long-term negative outcomes among bereaved adolescents : a population-based survey study. JOURNAL OF CLINICAL ONCOLOGY. 2017;35(27):3136–42.
MLA
Beernaert, Kim et al. “Distrust in the End-of-life Care Provided to a Parent and Long-term Negative Outcomes Among Bereaved Adolescents : a Population-based Survey Study.” JOURNAL OF CLINICAL ONCOLOGY 35.27 (2017): 3136–3142. Print.
@article{8546151,
  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 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.},
  author       = {Beernaert, Kim and Kreicbergs, Ulrika and Fürst, Carl Johan and Nyberg, Tommy and Steineck, Gunnar and Bylund-Grenklo, Tove},
  issn         = {0732-183X},
  journal      = {JOURNAL OF CLINICAL ONCOLOGY},
  keywords     = {TRUST,DEATH,SUICIDE,DEPRESSION,CHILDHOOD,YOUTH},
  language     = {eng},
  number       = {27},
  pages        = {3136--3142},
  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},
}

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