Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

Background. Patients and caregivers facing complex health decisions must make sense of unfamiliar, emotionally challenging information and experiences. For patients with hematological malignancy, bone marrow transplant (BMT) may be the best chance for a cure but has significant risk of morbidity and mortality. This study aimed to investigate and support patient and caregiver sensemaking as they consider BMT. Methods. Ten BMT patients and 5 caregivers engaged in remote participatory design (PD) workshops. Participants drew timelines of their memorable experiences leading up to BMT. Then, they used transparency paper to annotate their timelines and design improvements to this process. Results. Thematic analysis of drawings and transcripts revealed a 3-phase sensemaking process. In phase 1, participants were introduced to BMT and understood it as a possibility, not an inevitability. In phase 2, they focused on meeting prerequisites including remission and donor identification. Participants came to believe they needed transplant, consequently describing BMT not as a decision between viable options, but that transplant was their “only chance” for survival. In phase 3, participants attended an orientation detailing the extensive risks of transplant, leading to anxiety and doubt. Participants designed solutions that provided reassurance to those grappling with the life-altering impacts of transplant. Conclusions. For patients and caregivers navigating complex health decisions, sensemaking is a dynamic, ongoing process that affects expectations and emotional well-being. Interventions targeting reassurance alongside risk information can alleviate emotional impact and facilitate expectation development. The integration of PD and sensemaking methodologies enables participants to create holistic, tangible representations of experiences while empowering stakeholder engagement in intervention design. This method could be applied to other complex medical contexts to understand lived experiences and develop effective support interventions. HIGHLIGHTS: Bone marrow transplant patients and caregivers experienced an evolving, emotionally challenging process of gradually understanding the transplant procedure and its risks. The solutions that participants designed centered on providing reassurance alongside risk information, suggesting future interventions could target emotional support as patients attempt to meet prerequisites and grapple with the risks of the potentially curative procedure. By viewing the challenges of complex medical decisions in terms of sensemaking and applying visual methods such as participatory design, researchers can facilitate expression of the dynamic, multifaceted, emotional components of experience and empower stakeholder involvement in intervention design.