Navigating uncertainty: Experiences of decision-making needs and supports among patients with hematologic...

To explore the experiences related to decision-making needs and decision-making supports among patients with hematologic malignancies prior to hematopoietic stem cell transplantation (HSCT) from the patient's perspective.

A descriptive qualitative study was conducted involving 18 patients with hematologic malignancies in the hematology department between July 2023 and March 2024. Participants were recruited using purposive sampling. Semi-structured, face-to-face interviews were conducted to collect data. Thematic analysis was used to analyze the transcribed data, and NVivo 11.0 software was employed to support data management and coding.

Four major themes encompassing eleven subthemes were identified: (a) information blind spots: navigating the knowledge deficit in transplant decision-making (thirst for knowledge versus cognitive gap, fragmented understanding of HSCT concepts, the unseen transplant environment and its psychological weight, uncertain balancing of therapeutic risks and benefits); (b) support gaps in reality: the discrepancy between expected and actual decision-making assistance (narrow pathways to reliable information, uneven and unfiltered information quality, power imbalances and distance in clinical communication); (c) reliance on informal support systems: peer and social networks (borrowing strength from peer narratives, emotional anchoring from family and social circles); and (d) patient-designed support: timeliness and multimodal information delivery (preference for early and proactive information delivery, diverse modalities to match diverse needs).

This study highlights the complex and multifaceted decision-making needs of patients with hematologic malignancies when facing HSCT. Patients exhibited strong information-seeking behaviors but faced notable informational and emotional gaps. Enhancing timely and personalized communication and integrating structured, patient-centered decision aids may reduce uncertainty and promote shared decision-making.