Background
Patients and carers commencing cancer treatment are required to understand complex information, often while managing emotional distress, uncertainty, and significant changes to their health and care needs. To support shared decision making and management of symptoms and side effects, patient and carers need timely, accessible, and relevant information and support at different points during their care. Patient journey mapping is a visual and patient-centred approach for understanding patients’ experiences throughout their care, identifying interactions with healthcare professionals, and gaps and opportunities in education and support.
Aims
This study aimed to map patient and carer journeys through cancer services, focusing on healthcare interactions, information needs, support gaps, and educational encounters.
Methods
Semi-structured interviews with healthcare professionals and patient and carer focus groups were analysed deductively and inductively presented using a journey mapping framework, across the following domains: referral pathways, treatment milestones, healthcare interactions, education encounters, information formats, emotional responses, and unmet needs.
Results
Healthcare professional interviews (n=3) described typical referral pathways, clinical consultations, timelines, and professional interactions across patient care pathways. Focus groups with patients (n=7) and carers (n=6) captured lived experiences of education encounters, emotional burden, information gaps, and support needs at different points in their care. Access and communication barriers were identified among patients and carers from regional and rural areas (n=8) and non-English speaking backgrounds (n=3). The journey maps highlighted recurring pressure points around diagnosis, treatment planning and education, side-effect management, disease progression and discharge from cancer services.
Conclusion
Journey mapping revealed gaps in the timing and accessibility of information and support across the cancer care pathway. These findings demonstrate the need for flexible, patient-centred approaches to education and support, greater opportunities for patient and carer engagement, and accessible resources that address language, health literacy, geographical and service navigation barriers.