Web 2.0 systems supporting childhood chronic disease management: A pattern language representation of a general architecture

<p>Abstract</p> <p>Background</p> <p>Chronic disease management is a global health concern. By the time they reach adolescence, 10–15% of all children live with a chronic disease. The role of educational interventions in facilitating adaptation to chronic disease is receiving growing recognition, and current care policies advocate greater involvement of patients in self-care. Web 2.0 is an umbrella term for new collaborative Internet services characterized by user participation in developing and managing content. Key elements include Really Simple Syndication (RSS) to rapidly disseminate awareness of new information; weblogs (blogs) to describe new trends, wikis to share knowledge, and podcasts to make information available on personal media players. This study addresses the potential to develop Web 2.0 services for young persons with a chronic disease. It is acknowledged that the management of childhood chronic disease is based on interplay between initiatives and resources on the part of patients, relatives, and health care professionals, and where the balance shifts over time to the patients and their families.</p> <p>Methods</p> <p>Participatory action research was used to stepwise define a design specification in the form of a pattern language. Support for children diagnosed with diabetes Type 1 was used as the example area. Each individual design pattern was determined graphically using card sorting methods, and textually in the form <it>Title, Context, Problem, Solution, Examples and References</it>. <it>Application references </it>were included at the lowest level in the graphical overview in the pattern language but not specified in detail in the textual descriptions.</p> <p>Results</p> <p>The design patterns are divided into functional and non-functional design elements, and formulated at the levels of organizational, system, and application design. The design elements specify access to materials for development of the competences needed for chronic disease management in specific community settings, endorsement of self-learning through online peer-to-peer communication, and systematic accreditation and evaluation of materials and processes.</p> <p>Conclusion</p> <p>The use of design patterns allows representing the core design elements of a Web 2.0 system upon which an 'ecological' development of content respecting these constraints can be built. Future research should include evaluations of Web 2.0 systems implemented according to the architecture in practice settings.</p

An integrated patient-centric approach for situated research on total hip replacement: ESTHER

Homecare is believed to alleviate the care responsibilities that professionals and health institutions are facing due to increasing need for care that our current society demands. Relying on the emergence of technological innovations homecare could empower patients to undertake a more active role in the care practice. Understanding the value of technologies to support patients’ awareness and reflection of their own progress is argued as an important step to design appropriate mechanisms that fit patients’ needs. This chapter discusses an integrated patient-centric approach to design homecare technologies considering patients’ personal experiences and social context as crucial aspects when providing care support. This approach proposes the development of in-situ methods and tools to provide a holistic view of patients care experience through the design of interventions in the context of use. The development of ESTHER (Experience Sampling for Total Hip Replacement) is presented to illustrate the benefits and challenges of conducting in-situ research by supporting the collection of physical activity and emotional states in order for patients to self-monitor and self-reflect on the progress of their recovery. The transition from open and simple interventions to more complex and specific ones opens the discussion of the role of technology to introduce new practices that uncover richer experiences by influencing patient’s care activities via self-reporting and self-reflecting mechanisms. The gradual introduction of technologies to uncover from general to more specific experiences it does not only address research needs, more important it brings an understanding on the acceptance of technologies in patients’ care practices. The consequence is a new generation of research to application tools that bring a closer understanding of patients’ experiences and context to inform the design of supportive homecare technologies that embrace a more active role of patients