MAPPING THE PATIENT JOURNEY: Understanding experiences and barriers to care in the context of poorly understood chronic illness. Natalia Duda¹ (dudan@tcd.ie), Dr Rebecca Maguire² & Dr Siobhán Corrigan¹ ¹ School of Psychology, Trinity College Dublin, Ireland ² Department of Psychology, Maynooth University, Ireland A N A L Y S I S Rich and detailed account of patients' lived experience. SURVEY LIFE GRID INTERVIEW Temporal aspects of the journey: Symptom onset, help-seeking, diagnosis, referrals, coordination of care Participant demographics Descriptive analyses Exploratory analyses Interpretative Phenomenological Analysis (IPA) C O N C L U S I O N S The present study provides a novel approach to exploring the lived experiences and journeys of patients with poorly understood chronic illness. By mapping patients' encounters with the healthcare system over time, it provides a pragmatic evaluation of healthcare quality, highlighting areas where improvements can be made to enhance patient- centred care. The study's findings will contribute to a broader understanding of the challenges faced by patients, emphasizing the significance of effective communication between patients and clinicians, especially in the face of medical uncertainty. Chronic illnesses with poorly understood or medically unexplained symptoms can be challenging for both patients and healthcare providers. Patients often experience lengthy healthcare journeys characterized by diagnostic and prognostic uncertainty, suboptimal communication, and strained consultation dynamics M E T H O D O L O G Y Snowball sampling methods Adults with poorly understood conditions Brief demographic questionnaire (online) Life grid (online or paper-based) Semi-structured interviews (virtual or in-person) A mixed-methods approach and participatory design to explore patients’ experiences of healthcare. Three components: THE LIFE GRID INTERVIEW O B J E C T I V E S To explore the journeys of patients with poorly understood chronic illness using Life Grid interview methodology; To describe and map patient pathways; To identify factors that act as barriers or facilitators to care. 1. 2. 3. R E F E R E N C E S Parry O, Thompson C, Fowkes G. Life Course Data Collection: Qualitative Interviewing using the Life Grid. Sociological Research Online. 1999 Jul 1;4(2):102–12. Richardson J, Ong BN, Sim J, Corbett M. Begin at the beginning… Using a lifegrid for exploring illness experience. Social research update. 2009;57:1-4. 1. 2. Preliminary analyses indicate suboptimal healthcare experiences among individuals with poorly understood illness. Participants described diagnostic delays, lengthy wait periods and poor continuity of care throughout their journeys. The complexity of patients’ narratives was captured by the life-grid. Figure 1 provides a visual depiction of one participant’s patient journey. P R E L I M I N A R Y R E S U L T S P A R T I C I P A N T S Participants completed a timeline outlining any significant or meaningful life events they could remember and the year/age at which they occurred. What was life like at the time? (friends, family, work) What was your health like at the time? What were your healthcare experiences like at the time? Around the time of each event identified..... Participants were invited to tell their story during an in- depth interview (virtual or in person). Follow-up questions concerned participants’ health over their lifetimes, with a focus on symptom onset, help-seeking, diagnosis, treatment and specific healthcare experiences. Emerging information was added to the life-grid during the interview Figure 1. Visual depiction of the patient journey captured by the Life Grid interview. 12 participants (8 Female, 4 Male) Age: 21-62 (M age=40) Conditions reported: ME/CFS, CRPS, FND, Lyme disease, POTS, MCAS, hEDS, Fibromyalgia, Sjögren’s syndrome B A C K G R O U N D The Life-Grid is a visual tool which can be used for exploring the narratives of individuals with chronic il