An integrated care model for people living with Parkinson’s disease (PD) offers the promise of meeting complex care needs in a person-centered way that addresses fragmentation and improves quality of life. The purpose of our research was to co-design a care delivery model that supports both social and medical care from the perspective of patients and care partners. In the first step of our co-design approach, participants from five countries were invited to share their experiences of living with PD during a narrative interview. A qualitative analysis of these narrative interviews based on the Corbin and Strauss model was done to map out patients’ trajectories. Three typical trajectories were identified: (a) the “unpredictable” trajectory, (b) the “situated” trajectory, and (c) the “demanding” trajectory. Based on the analysis of these trajectories, we were able to integrate various patient experiences into the design of an integrated care network.
Mobile health (mHealth) technologies for Parkinson’s disease management have developed quickly in recent years. Research in this area typically focuses on evaluation of the accuracy and reliability of the technology, often to the exclusion of social factors and patient perspectives. This qualitative systematic review aimed to investigate the barriers to and facilitators of use mHealth technologies for disease self-management from the perspective of People with Parkinson's (PwP). Findings revealed that technological, as well as social, and financial factors are key considerations for mHealth design, to ensure its acceptability, and long-term use by PwP. This study proposes that a co-design approach could contribute to the design and development of mHealth that are socially acceptable to PwP, and enable their successful long-term use in the context of daily life.
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eHealth technologies play a role in the development of integrated care models for people living with Parkinson disease by improving communication with their health care teams and support self-care practices in a personalized way. This article presents a co-design approach to designing an eHealth technology, the eCARE-PD platform, that addresses the needs and expectations of people living with Parkinson disease, generates tailored care tips, and recommends actions for managing care priorities at home. We use a co-design approach involving four main iterative phases: (1) preparation, (2) mapping, (3) testing and using, and (4) co-producing solutions and requirements. This approach uses several methods to engage people directly to design this technology. The study allowed us to identify design principles to be integrated in the development of the eCARE-PD platform. These principles incorporate the expectations of future users, which were expressed during the iterative phases of the co-design process: (a) six key design features based on users’ needs and expectations, (b) six main issues users raised during a test at home and key features for improving the design of the eCARE-PD platform, and (c) collective solutions to design an interactive, meaningful, tailored, empathic, and socially acceptable technology. The results of the successive phases of the co-design process allow us to underline the progressive constitution of a technology defined over successive iterations as a digital companion supporting the self-care process at home and having the capacity to generate tailored digital health communication.
: In this paper we present an interaction-oriented approach to the process of designing a document for the end-user. We emphasize exchange between subjects and the subjects' relationship with their environment. The analysis of verbal exchanges offers a way to apprehend such a situated collective. We attempt to unveil the cognitive processes underlying this task with special attention paid to the collective's ability to find in its environment the resources permitting the emergence of shared knowledge. We focus on this object's role as a vehicle for emergence and on its inscription in an interactional dynamics.
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