Parent-Clinician Communication and End-of-Life Preparation in Pediatric Oncology: An Explanatory Sequential Mixed-Methods Study.

Abstract

Purpose: Parental preparedness for their child's end of life (EOL) may lessen perceived suffering and prolonged grief. Although clear communication may support parental preparedness, the specific communication components that influence this process remain poorly understood. This study examined how communication influences parental EOL preparation.

Methods: We employed an explanatory sequential mixed-methods design. We analyzed cross-sectional survey data from recently bereaved parents (6-24 months post-loss) using multiple logistic regression. Informed by quantitative findings, we conducted semi-structured interviews with bereaved parents and analyzed the data using thematic analysis. We then applied the Pillar Integration Process to link statistical associations with qualitative data.

Results: The quantitative sample included 124 bereaved parents (mean age 46 years; 82% White; 64% mothers), and the qualitative sample comprised 15 parents (median age 43; 86% White; 93% mothers). Parents who felt adequately informed of a poor prognosis were more likely to feel prepared for their child's EOL than those wanting more prognostic information (69% vs. 44%, p = 0.023), and adjusted models confirmed this association. Communication quality and trust were not associated with EOL preparedness. Qualitative findings revealed that clear, direct EOL conversations helped parents recognize impending death, provided anticipatory guidance, and facilitated concrete planning. Integration showed that prognostic communication was necessary but insufficient; parents also needed help translating information into actionable plans. Trust and high-quality communication lay the foundation that allows difficult conversations to be heard and acted upon.

Conclusion: Clinicians may best support parents by providing explicit, action-oriented guidance, compassionate and preference-concordant communication, trusted relationships, and supportive resources.