Communication and Trust in the Care Provided to a Dying Parent : A Nationwide Study of Cancer-Bereaved Youths
A partir d'une enquête auprès de 622 jeunes âgés entre 13 et 16 ans lors du décès par cancer d'un parent, cette étude évalue, en fonction de l'information médicale reçue, leur niveau de confiance vis-à-vis des soins prodigués dans la dernière semaine de vie
Purpose : To assess children’s trust in the care provided to a dying parent during the final week of life in relation to end-of-life medical information about disease, treatment, and death.
Methods : This nationwide population-based survey included 622 (73%) of 851 youths who, 6 to 9 years earlier, at age 13 to 16 years, lost a parent to cancer. We asked about the children’s reception of end-of-life professional information and trust in the care provided. We also asked about depression and several potential risk factors of distrust in the care provided.
Results : A majority (82%) reported moderate/very much trust in the care provided. Compared with children who received end-of-life medical information before their loss, the risk of distrust in the care provided was higher in those who received no information (risk ratio [RR], 2.5; 95% CI, 1.5 to 4.1), in those who only received information afterward (RR, 3.2; 95% CI, 1.7 to 5.9), and in those who did not know or remember if end-of-life medical information was provided (RR, 1.7; 95% CI, 1.1 to 2.5). Those reporting distrust in the care provided had an RR of 2.3 (95% CI, 1.5 to 3.5) for depression. Furthermore, the risk of distrust in the care provided was higher among children reporting poor efforts to cure (RR, 5.1; 95% CI, 3.6 to 7.3), and/or a poor relationship with the surviving parent (RR, 2.9; 95% CI, 2.0 to 4.1).
Conclusion : Our study suggests that children’s trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.