Mixed‐methods analysis of decisional regret in parents following a child's death from cancer

Abstract

Background and objectivesDecisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret.MethodsWe used a convergent mixed‐methods design including quantitative items and free‐text responses from a survey of parents 6–24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free‐text responses guided development and interpretation of quantitative multinomial models.ResultsParents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty‐seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self‐blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories.ConclusionsThough decisional regret is common among cancer‐bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T‐cell therapy in pediatrics

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Partnering With Parents to Dismantle “Good-Death” Narratives

“…Parents rated the extent that they agreed with the statement that their child experienced a good death and wrote in additional context. 2,3 The parents' deeply candid free-text responses showed how some parents bristled at these questions and revealed that our (and many others') assumption that it was possible for a child's death to be good created discomfort at best and deep harm at worst: "How the fuck is your child dying considered a 'good death'? Come on.…”