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“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents

  • Author Footnotes
    ⁎ Denotes shared first authorship
    Deborah Feifer
    Footnotes
    ⁎ Denotes shared first authorship
    Affiliations
    Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts
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  • Author Footnotes
    ⁎ Denotes shared first authorship
    ,
    Author Footnotes
    ⁎⁎ Corresponding Author: Elizabeth Broden PhD RN, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215, Phone: 978-340-3315
    Elizabeth Broden
    Footnotes
    ⁎ Denotes shared first authorship
    ⁎⁎ Corresponding Author: Elizabeth Broden PhD RN, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215, Phone: 978-340-3315
    Affiliations
    Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts
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  • Justin N Baker
    Affiliations
    Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
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  • Joanne Wolfe
    Affiliations
    Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts

    Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts
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  • Jennifer Snaman
    Affiliations
    Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts

    Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts
    Search for articles by this author
  • Author Footnotes
    ⁎ Denotes shared first authorship
    ⁎⁎ Corresponding Author: Elizabeth Broden PhD RN, Dana-Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215, Phone: 978-340-3315

      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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