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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
Vrije Univ Brussel, Belgium ; Univ Ghent, Belgium.
Ersta Sköndal Bracke University College ; Karolinska Institutet.
Lund University.
Karolinska Institutet ; Univ Cambridge, UK.
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2017 (English)In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 35, no 27, p. 3136-3142Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
American Society of Clinical Oncology , 2017. Vol. 35, no 27, p. 3136-3142
National Category
Nursing
Research subject
Health and Caring Sciences
Identifiers
URN: urn:nbn:se:lnu:diva-68144DOI: 10.1200/JCO.2017.72.9814ISI: 000410726800009PubMedID: 28787258Scopus ID: 2-s2.0-85029685358OAI: oai:DiVA.org:lnu-68144DiVA, id: diva2:1146246
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2020-01-17Bibliographically approved

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Bylund Grenklo, Tove

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