Abstract
Context
Bereaved parents may have heightened risk for decisional regret; however, little is
known about regret early in bereavement.
Objectives
We characterized decisional regrets endorsed by parents of children who died from
cancer within the first two years of their bereavement.
Methods
We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months
from their child's death. Parents indicated whether they had regrets about decisions
made at the end of their child's life (yes/no/I don't know) and elaborated with free
text. We used content analysis to identify recurrent categories in parents’ responses.
Results
A total of 125 parents of 88 children completed the survey; 123 responded to the decisional
regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported
decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental
free-text responses related to 5 categories: treatments, including those pursued and/or
not pursued (n=57), decision-making processes (n=35), relationships with their child
and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6).
The relative frequency of categories was similar in parents with and without decisional
regret, but self-blame was more common in responses from parents with decisional regret.
Conclusion
Many bereaved parents endorse decisional regret in early bereavement. Treatments and
decision-making processes were most cited among parents both with and without regret.
Identifying factors associated with heightened parental risk of decisional regret
using longitudinal study is an important focus of future research.
Key Words
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References
- Validation of a Decision Regret Scale.Med Decis Making. 2003; 23: 281-292https://doi.org/10.1177/0272989X03256005
- Regret in Decision Making.Curr Dir Psychol Sci. 2002; 11: 212-216https://doi.org/10.1111/1467-8721.00203
- Too Much or Not Enough: Decisional Regret in Parents of Children Who Died from Cancer (SCI960).J Pain Symptom Manage. 2021; 61: 702https://doi.org/10.1016/j.jpainsymman.2021.01.120
- Regret and unfinished business in parents bereaved by cancer: A mixed methods study.Palliat Med. 2020; 34: 367-377https://doi.org/10.1177/0269216319900301
- Bereavement-Related Regret Trajectories Among Widowed Older Adults.J Gerontol B Psychol Sci Soc Sci. 2014; 69B: 40-47https://doi.org/10.1093/geronb/gbt050
- Measuring the regret of bereaved family members regarding the decision to admit cancer patients to palliative care units.Psychooncology. 2008; 17: 926-931https://doi.org/10.1002/pon.1312
- Early Bereavement Psychosocial Outcomes in Parents of Children Who Died from Cancer with a Focus on Social Functioning.JCO Oncology Practice. December 2022; (accepted)
- Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey.Pediatric blood & cancer. 2016; 63: 1594-1602https://doi.org/10.1002/pbc.26046
- Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience.J Pain Symptom Manage. 2021; 61: 781-788https://doi.org/10.1016/j.jpainsymman.2020.09.014
- The dual process model of coping with bereavement: rationale and description.Death Stud. 1999; 23: 197-224https://doi.org/10.1080/074811899201046
- Three Approaches to Qualitative Content Analysis.Qual Health Res. 2005; 15: 1277-1288https://doi.org/10.1177/1049732305276687
- Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study: Qualitative descriptive study.Nurs Health Sci. 2013; 15: 398-405https://doi.org/10.1111/nhs.12048
- If only I could turn back time—Regret in bereaved parents.Pediatr Blood Cancer. 2020; 67https://doi.org/10.1002/pbc.28265
VERBI Software. MaxQDA 2022. Published online 2021. maxqda.com
- Factors That Distinguish Symptoms of Most Concern to Parents from Other Symptoms of Dying Children.J Pain Symptom Manage. 2010; 39: 627-636https://doi.org/10.1016/j.jpainsymman.2009.08.012
- Symptoms and Suffering at the End of Life in Children with Cancer.N Engl J Med. 2000; 342: 326-333https://doi.org/10.1056/NEJM200002033420506
- Paediatric end-of-life care - symptoms and problems: parent assessment.BMJ Support Palliat Care. 2021; (Published online March 11bmjspcare-2021-002891)https://doi.org/10.1136/bmjspcare-2021-002891
- Bereavement Support for Families Following the Death of a Child from Cancer: Experience of Bereaved Parents.J Psychosoc Oncol. 2006; 24: 65-83https://doi.org/10.1300/J077v24n02_05
- Seed Planting” As an Approach for Longitudinal Prognostic Disclosure in Pediatric Cancer: A Case Series.J Palliat Med. 2022; 12 (Published online Septemberjpm.2022.0219)https://doi.org/10.1089/jpm.2022.0219
- The impact of the caregiver-oncologist relationship on caregiver experiences of end-of-life care and bereavement outcomes.Support Care Cancer. 2020; 28: 4219-4225https://doi.org/10.1007/s00520-019-05185-2
- Decisional Regret Among Parents of Children With Cancer.J Clin Oncol. 2016; 34: 4023-4029https://doi.org/10.1200/JCO.2016.69.1634
- Adolescent and Young Adult Cancer Patients’ Experiences With Treatment Decision-making.Pediatrics. 2019; 143e20182800https://doi.org/10.1542/peds.2018-2800
- Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution.J Palliat Med. 2016; 19: 326-332https://doi.org/10.1089/jpm.2015.0253
- Association of information satisfaction, psychological distress and monitoring coping style with post-decision regret following breast reconstruction.Psychooncology. 2007; 16: 342-351https://doi.org/10.1002/pon.1067
- Mismatch between Pediatric Oncologists’ Private and Parent-Facing Prognostic Communication: Communication Patterns Used to Soften Prognostic Disclosure.J Palliat Med. 2022; (Published online August 17jpm.2022.0265)https://doi.org/10.1089/jpm.2022.0265
- Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program.J Pain Symptom Manage. 2017; 53: 767-775https://doi.org/10.1016/j.jpainsymman.2016.10.359
- Guilt in Bereavement: The Role of Self-Blame and Regret in Coping with.PLoS ONE. 2014; 9 (Loss. Uchino BN, ed): e96606https://doi.org/10.1371/journal.pone.0096606
- Upward and Downward Counterfactual Thought After Loss: A Multiwave Controlled Longitudinal Study.Behav Ther. 2021; 52: 577-593https://doi.org/10.1016/j.beth.2020.07.007
- Changes Over Time in Good-Parent Beliefs Among Parents of Children With Serious Illness: A Two-Year Cohort Study.J Pain Symptom Manage. 2019; 58: 190-197https://doi.org/10.1016/j.jpainsymman.2019.04.018
- Naming the Problem: A Structural Racism Framework to Examine Disparities in Palliative Care.J Pain Symptom Manage. 2022; 63: e461-e463https://doi.org/10.1016/j.jpainsymman.2021.07.035
- Interpreting at the End of Life: A Systematic Review of the Impact of Interpreters on the Delivery of Palliative Care Services to Cancer Patients With Limited English Proficiency.J Pain Symptom Manage. 2016; 51: 569-580https://doi.org/10.1016/j.jpainsymman.2015.10.011
- Disparities in the Intensity of End-of-Life Care for Children With Cancer.Pediatrics. 2017; 140e20170671https://doi.org/10.1542/peds.2017-0671
Article info
Publication history
Accepted:
December 27,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
