Designing the Healthcare System for the Fulfilment of Patient Goals: A Patient-Centric Exploration in the Home...

This study investigates patients' goal-oriented experiences in the context of home dialysis for chronic kidney disease (CKD). The aim is to understand how the home care context can be designed to support chronic patients in achieving their goals. Drawing on goal-oriented experience theory, we explore how patients' motivations, desired outcomes, and lived experiences shape their perceptions of home health care. To do so, we employed a co-design-based qualitative methodology, including postal kits, photo diaries, ethnographic observations, in-depth interviews, and participatory workshops with 22 stakeholders (patients, healthcare professionals, and caregivers) in public and private healthcare institutions in France. Seven key design features vital to patient experience and goal fulfilment were identified: patient participation, social support, training, food quality, home layout, interactions with medical staff, and consumable supply. These features enhance the cognitive (control and expertise), emotional (safety and comfort), and physical (fitness) dimensions of patient well-being. Patients' main goals were survival, freedom, mobility, and maintaining normalcy in life. This study contributes to the literature on healthcare design and the patient journey by emphasizing goal-oriented care and demonstrating how experiential knowledge and higher-order goals can inform system design beyond conventional 'goals of care.' Healthcare systems should integrate patient-defined goals into service design to promote autonomy and quality of life. Involving multiple stakeholders can foster deeper insights and more effective, user-centric care models. This research pioneers a patient-centric, goal-oriented design framework in home healthcare, emphasizing the value of co-design methods.