Wake up, wake up! It’s me! It’s my life! patient narratives on person-centeredness in the integrated care context: a qualitative study

BACKGROUND Person-centered care emphasizes a holistic, humanistic approach that puts patients first, at the center of medical care. Person-centeredness is also considered a core element of integrated care. Yet typologies of integrated care mainly describe how patients fit within integrated services, rather than how services fit into the patient's world. Patient-centeredness has been commonly defined through physician's behaviors aimed at delivering patient-centered care. Yet, it is unclear how 'person-centeredness' is realized in integrated care through the patient voice. We aimed to explore patient narratives of person-centeredness in the integrated care context. METHODS We conducted a phenomenological, qualitative study, including semi-structured interviews with 22 patients registered in the Northwest London Integrated Care Pilot. We incorporated Grounded Theory approach principles, including substantive open and selective coding, development of concepts and categories, and constant comparison. RESULTS We identified six themes representing core 'ingredients' of person-centeredness in the integrated care context: "Holism", "Naming", "Heed", "Compassion", "Continuity of care", and "Agency and Empowerment", all depicting patient expectations and assumptions on doctor and patient roles in integrated care. We bring examples showing that when these needs are met, patient experience of care is at its best. Yet many patients felt 'unseen' by their providers and the healthcare system. We describe how these six themes can portray a continuum between having own physical and emotional 'Space' to be 'seen' and heard vs. feeling 'translucent', 'unseen', and unheard. These two conflicting experiences raise questions about current typologies of the patient-physician relationship as a 'dyad', the meanings patients attributed to 'care', and the theoretical correspondence between 'person-centeredness' and 'integrated care'. CONCLUSIONS Person-centeredness is a crucial issue for patients in integrated care, yet it was variably achieved in the current pilot. Patients in the context of integrated care, as in other contexts, strive to have their own unique physical and emotional 'space' to be 'seen' and heard. Integrated care models can benefit from incorporating person-centeredness as a core element.