Patient education and counseling · 2026
Navigating uncertainty: Experiences of decision-making needs and supports among patients with hematologic malignancies prior to hematopoietic stem cell transplantation: A descriptive qualitative study.
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Yang Yidan, Chen Jingyi, Chen Qionghong, Li Ruxin, Wu Yong, Hu Rong
Аннотация
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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).
CONCLUSION: 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.
METHODS: 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.
RESULTS: 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).
CONCLUSION: 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.