"It's like a mirror image of my illness": Exploring Patient Perceptions About Illness Using Health Mind Mapping-a Qualitative Study

A patient's self-management of chronic disease is influenced in part by their explanatory model of illness (EMI) and daily lived experiences (DLE). Unfortunately, assessing patient's EMI and using this information to engage patients in chronic illness self-management continues to be a challenge. "Health mind mapping" (HMM) is a novel process that captures a patient's EMI and DLE through the use of a graphic representation of ideas. We aimed to explore patient's experiences using HMM. Qualitative study utilizing semi-structured interviews. Adult patients with uncontrolled type 2 diabetes from a primary care clinic. A facilitator guided 20 participants through the process of developing a health mind map. Subsequently, each participant completed a semi-structured interview about their experience with the process and perceptions about how their maps could be used. The process and interviews were video and audio recorded. We conducted a content analysis of the maps and a thematic analysis, using an inductive approach, of the interview data. Participants explored a wide range of EMs and DLEs in their HMM process. Participants reported that the HMM process (1) helped to develop insight about self and illness; (2) was a catalyst for wanting to take actions to improve illness; and (3) represented an opportunity to actively share illness experiences. They reported potential uses of the map: (1) to communicate about their illness to others in their social network; (2) to communicate about their illness to providers; (3) to help others with diabetes manage their illness; and (4) to encourage ongoing engagement in diabetes self-care. Participants reported that HMM helped them develop new insight about their illness and was a catalyst for encouraging them to take control of their illness. HMM has the potential to facilitate communication with providers and engage patients in collaborative goal setting to improve self-care in chronic illness.