Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

Enhancing Access to Open Corpus Educational Content: Learning in the Wild

The World Wide Web (WWW) provides access to a vast array of interconnected educational content on almost every subject imaginable. A great deal of this content is ideal for incorporation into personalised eLearning experiences. However the discovery, harvesting and incorporation of appropriate educational material have proven to be complex and arduous tasks. Traditional educational hypertext systems are based upon the generation of links and anchors between content objects [1]. However the dynamic incorporation of open corpus educational content in eLearning requires the generation of a relationship between educational concepts and the hypertext documents. One approach to create this overlay between concept and content is to use a Mindmap interface to allow learners to explore and associate hypertext content with knowledge maps of their own creation. This paper presents the Open Corpus Content Service (OCCS), a framework that uses the hypertext structure of the WWW to provide methods of educational content discovery and harvesting. The OCCS semantically examines linked content on both the WWW and in digital content repositories, and creates concept specific caches of content. The paper also introduces U-CREATe, a novel user-driven Mindmap interface for supporting the exploration and assembly of content cached by the OCCS, in a pedagogically meaningful manner. The combination of these systems benefits both the educator and learner, empowering the learner through ownership of the educational experience and allowing the educator to focus on the pedagogical design of educational offerings rather than content authoring