?Background
Most cancer care pathway studies are hospital-based, focus on the pathways until diagnosis, and are restricted to patient-level factors. Understanding the journey and decision-making process through the system lens provides insights into constraints, rules, and the agency exercised by the patient/family. The Institutional Analysis and Development Framework (IAD) put forth by Elinor Ostrom enables us to examine how actors interact with institutions and their rules. Adapting this framework to the patient journey uniquely provides a structure for translating patient experiences to gain insights into health policy and systems.
Objectives
Across the pathways of care experience by persons diagnosed with cancer, to analyse how institutional rules, referral practices, and material conditions influence patient movement across levels of care, and to examine how patients and families exercise agency within these institutional constraints during their cancer care journeys.
Methods
This qualitative study used the analytical lenses of both patient journey mapping and the IAD framework, treating the personal journey as evidence of how institutions work. Journey mapping was done for 32 participants diagnosed with cancer, 6 months to 5 years back. The journey map served as a trigger for the in-depth interview, which examined their lived experiences and decision-making along the care pathway. Willing, vocal participants with varying socio-economic statuses were purposively selected from a district in Puducherry, Southern India. The interview guide used the Chronic Care Model and the IAD framework. Data saturation guided the sample size. During the analysis, the journey was viewed through an interpretive lens, using the IAD framework to examine how institutions shaped patients' perceived choices.
 
Results
The cancer care journey involved multiple interacting participants, including patients, family members, private practitioners, primary, secondary and tertiary care providers. The entry point for care was mostly the private/government facility closest to their residence. Further decisions were mainly guided by the clinician, with patient/family preferences, fear of delay, and perceptions of quality and trust in the hospital. The rules-in-use were the availability of diagnostics and the perceived institutional capability. Repeating diagnostic tests was common while crossing institutional boundaries, reflecting the non-transferability of results and institutional caution. The other rules were fixed slots for surgery/radiotherapy, waiting lists, and admission criteria. Material conditions, such as the availability of free or subsidised treatment, strongly influenced care-seeking, even when they were associated with long travel distances and extended waiting times, mainly to navigate the financial constraints. Physical stamina, age, and mobility limitations compounded the challenge of navigating complex hospital environments. Community attributes, particularly family structure and social networks, played a key role in navigating the institutional barriers. Family members played a prominent role in coordinating appointments, arranging transport, and making treatment-related decisions. Informal networks, such as known doctors, nurses, hospital staff, or political personnel, facilitated the provision of fast, smooth care.
Conclusion
The interaction of action arenas, rules-in-use, material conditions, and community attributes produced distinct care trajectory patterns. Most journeys were prolonged and fragmented, marked by repeated referrals, diagnostic delays, and interrupted follow-up. Across trajectories, patient and family agency was exercised within institutional constraints.