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

• Published in: Pediatric blood & cancer 2023-10, Vol.70 (10), p.e30541-n/a
• Main Authors: Feifer, Deborah, Broden, Elizabeth G., Xiong, Niya, Mazzola, Emanuele, Baker, Justin N., Wolfe, Joanne, Snaman, Jennifer M.
• Format: Article
• Language: English
• Subjects: Cancer; decisional regret; grief; Hematology; mixed methods; Mixed methods research; Oncology; parent; Parents & parenting; Pediatrics; Surveys
• ISSN: 1545-5009; 1545-5017
• DOI: 10.1002/pbc.30541

Background and objectives Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. Methods We 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. Results Parents (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