When You Don’t Know, You Don’t Know. Haematopoietic Stem Cell Transplantation Recipients’ Experiences of Long-Term Follow-Up Care in England: A Multi-Method Study

Abstract

Understanding and meeting the informational needs of haematopoietic stem cell transplantation (HSCT) recipients is essential for developing person-centred long-term follow-up (LTFU) care. This thesis explores the lived experiences of HSCT recipients in England as they navigate LTFU care, focusing on the psychological, informational, and structural factors that shape engagement and well-being. Using a phenomenological, multi-method approach, it comprises three studies: a systematic review and qualitative evidence synthesis, a qualitative analysis of online written accounts from seventeen HSCT recipients in England, and in-depth interviews with fourteen recipients exploring their informational needs during LTFU. Findings reveal that recipients frequently encounter insufficient information about potential long-term complications and LTFU practices, resulting in persistent uncertainty. Insights from written accounts and interviews show that Future Uncertainty is central to LTFU care for HSCT recipients in England. This uncertainty manifests in two key ways: service navigation uncertainty, relating to how recipients access and move through care systems, and health uncertainty, concerning ongoing risks, late effects, and self-management. While recipients express a strong desire to be prepared for future health events, this is often undermined by the timing, clarity, and objectivity of information provided by transplant clinics. Many become proactive in seeking information, often turning to online resources and peer support, which can be both empowering and anxiety-inducing. Unclear transitions, evolving health risks, and gaps in information contribute to psychological strain, reinforcing the overarching theme of Future Uncertainty in LTFU care. Addressing these challenges requires clear communication, tailored and timely information, written care plans, and strong clinical relationships. Supporting health literacy, clarifying care roles, and guiding recipients to reliable information sources can empower recipients to manage their care with confidence. This thesis highlights the importance of acknowledging the lived experience of uncertainty, encapsulated by one HSCT recipient as: “When you don't know, you don't know.”