Communication and Trust in the Care Provided to a Dying Parent: A Nationwide Study of Cancer-Bereaved Youths

 © 2013 by American Society of Clinical Oncology

1. Tove Bylund Grenklo⇑, Ulrika C. Kreicbergs, Unnur A. Valdimarsdóttir, Tommy Nyberg, Gunnar Steineck and Carl Johan Fürst

+ Author Affiliations

1. Tove Bylund Grenklo, Ulrika C. Kreicbergs, Unnur A. Valdimarsdóttir, Tommy Nyberg, Gunnar Steineck, and Carl Johan Fürst, Karolinska Institutet; Tove Bylund Grenklo and Carl Johan Fürst, Stockholm Sjukhem Foundation; Ulrika C. Kreicbergs, Sophiahemmet University College, Stockholm; Gunnar Steineck, Sahlgrenska Academy, Gothenburg; Carl Johan Fürst, Lund University, Lund, Sweden; and Unnur A. Valdimarsdóttir, University of Iceland, Reykjavík, Iceland, and Harvard School of Public Health, Boston, MA.

1. Corresponding author: Tove Bylund Grenklo, MSc, Department of Oncology Pathology, Z5:U1 Clinical Cancer Epidemiology, Karolinska Institutet, Karolinska University Hospital, 171 76 Stockholm, Sweden; e-mail: tove.bylund.grenklo@ki.se.

Abstract

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