Regret and unfinished business in parents bereaved by cancer: A mixed methods study

Abstract

Background: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. Aim: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. Design: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. Setting/Participants: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. Results: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers ( p ⩽ 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business–related distress were associated with distress while caregiving and prolonged grief symptoms. Conclusion: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents

“…Specifically, parents of children with advanced cancer voiced the importance of “doing right by my child,” which included remaining at the child's side, showing the child that he or she is cherished, and promoting the child's health 32 . Experiencing regret following a child's death has been linked with prolonged grief in bereaved parents 35 . Commonly reported regrets were wishes to change their treatment decisions, interact with the child differently, focus more on quality of life, and reappraise values and priorities prior to their child's diagnosis 35,36 .…”

“…Experiencing regret following a child's death has been linked with prolonged grief in bereaved parents 35 . Commonly reported regrets were wishes to change their treatment decisions, interact with the child differently, focus more on quality of life, and reappraise values and priorities prior to their child's diagnosis 35,36 . Focusing their purpose on “living for the child” and doing everything they can to support the child's quality of life while he or she is alive may protect against regret.…”

An open trial of meaning-centered grief therapy: Rationale and preliminary evaluation

“…We have termed this the “Reciprocal Pathway Theory of Meaning-Making” because of the empirical observation that enhancing one domain of meaning may positively affect another (e.g., a bereaved parent's sense of purpose may be increased through devoting herself to creating meaning in her child's life and legacy) (Lichtenthal et al, 2011a, 2011c, 2017; Lichtenthal & Breitbart, 2015). This suggests there are multiple “clinical entry points” through which a therapist can intervene to enhance meaning (Lichtenthal et al, 2011a, 2011c); thus, across the 16 sessions, the therapist is working from different vantage points, ensuring that various facets of meaning are considered and explored to the extent they may be helpful for a given parent. The concept of choice is highlighted repeatedly to empower parents and highlight freedom in the face of situations that are beyond their control, such as their profound loss.…”

To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure

“…4 Aside from Ari's immediate well-being, the medical team also worried about Ari's parents, as prior studies suggest that most parents do not regret sharing a terminal diagnosis/prognosis with their children; meanwhile, a minority of parents who avoid the topic endorse regret. 22,23 In hindsight, Ari's mother falls into the majority of parents who did not share a terminal diagnosis with their child and do not regret it.…”