‘Chugging along, plugging in and out of it’: Understanding a place-based approach for community-based support of mental health recovery

Community-based Mental Health (MH) organisations in the United Kingdom (UK) are facing challenges for sustaining in-person service delivery. Without empirical evidence that demonstrates the value of a place-based approach for MH recovery, and the types of resources needed to build nurturing spaces for peer support, community-based MH organisations will struggle to maintain their physical spaces. We present empirical insights from a case study involving interviews with 20 students accessing peer support services at the Recovery College Collective, a community-based MH organisation located in the North East of England. The interview study aims to evidence how a place-based approach can afford MH recovery. We draw from discourses on place-making and interpret our interview findings through an established framework that highlights four mechanisms through which place impacts recovery: place for doing, being, becoming and belonging. We use this framework to structure our findings and highlight key qualities of place for establishing and maintaining MH recovery. Our contribution is two-fold: we address a gap in the literature by providing empirical understandings of how place influences MH recovery, whilst extending previous research by considering the role that place plays in community-based organisations. This is timely because of the challenges faced in securing in-person service delivery post-pandemic, and a shift towards remote service provision models. We highlight key implications: (i) Accessing a physical place dedicated to MH support is vital for people who do not have anywhere else to go and are socially isolated due to their health conditions; (ii) Connecting through peer-to-peer interaction is an integral part of the recovery process, and learning from people with lived experience can inform a place-based approach that best suit their needs; and (iii) Recognising the value of place for MH support, and the resources needed for peer support delivery in the community, will help secure places that our research participants described as lifesaving

People with long-term conditions sharing personal health data via digital health technologies:a scoping review to inform design

The use of digital technology amongst people living with a range of long-term health conditions to support self-management has increased dramatically. More recently, digital health technologies to share and exchange personal health data with others have been investigated. Sharing personal health data with others is not without its risks: sharing data creates threats to the privacy and security of personal data and plays a role in trust, adoption and continued use of digital health technology. Our work aims to inform the design of these digital health technologies by investigating the reported intentions of sharing health data with others, the associated user experiences when using these digital health technologies and the trust, identity, privacy and security (TIPS) considerations for designing digital health technologies that support the trusted sharing of personal health data to support the self-management of long-term health conditions. To address these aims, we conducted a scoping review, analysing over 12,000 papers in the area of digital health technologies. We conducted a reflexive thematic analysis of 17 papers that described digital health technologies that support sharing of personal health data, and extracted design implications that could enhance the future development of trusted, private and secure digital health technologies.</p

Talking about Decisions: The Facilitating Effect of a Celebrity Health Announcement on the Communication of Online Personal Experiences around Decision-making

This study examines how posters on an online forum discussed their own current and past decision-making in response to a celebrity health announcement. We examined messages in response to a celebrity narrative, and extracted those explicitly related to decision-making around genetic testing and preventative surgery. Using deductive coding we identified different types of decision-making narratives, and with inductive coding we examined how users discussed decision-making activities. Guided by the literature on narrative content types in decision-making, and on celebrity health narratives, we found that the celebrity decision announcement facilitated social sharing in relation to two key decision-making activities. First, identifying with the celebrity allowed people to reflect and compare their own personal health circumstances. This empowered readers to appraise and select options about their current decision-making regarding preventative surgery. Second, the announcement allowed an extension of the discussion beyond the celebrity, and acted as a catalyst encouraging other people to share their own previous decision-making experiences. These experiences contained a mix of narratives content types, and provided an opportunity for posters to evaluate their decisions, and to contribute to a repository of decision-making examples for others. Health narratives act as communication devices in decision-making, and we discuss the findings in relation to the extension of the educational and persuasive function of celebrity health narratives

E-Voting in an ubicomp world: trust, privacy, and social implications

The advances made in technology have unchained the user from the desktop into interactions where access is anywhere, anytime. In addition, the introduction of ubiquitous computing (ubicomp) will see further changes in how we interact with technology and also socially. Ubicomp evokes a near future in which humans will be surrounded by “always-on,” unobtrusive, interconnected intelligent objects where information is exchanged seamlessly. This seamless exchange of information has vast social implications, in particular the protection and management of personal information. This research project investigates the concepts of trust and privacy issues specifically related to the exchange of e-voting information when using a ubicomp type system

Syndromes with congenital brittle bones

BACKGROUND: There is no clear definition of osteogenesis imperfecta (OI). The most widely used classification of OI divides the disease in four types, although it has been suggested that there may be at least 12 forms of OI. These forms have been named with numbers, eponyms or descriptive names. Some of these syndromes can actually be considered congenital forms of brittle bones resembling OI (SROI). DISCUSSION: A review of different syndromes with congenital brittle bones published in the literature is presented. Syndromes are classified in "OI" (those secondary to mutations in the type I pro-collagen genes), and "syndromes resembling OI" (those secondary to mutations other that the type I pro-collagen genes, identified or not). A definition for OI is proposed as a syndrome of congenital brittle bones secondary to mutations in the genes codifying for pro-collagen genes (COL1A1 and COL1A2). SUMMARY: A debate about the definition of OI and a possible clinical and prognostic classification are warranted

The differential diagnosis of children with joint hypermobility: a review of the literature

<p>Abstract</p> <p>Background</p> <p>In this study we aimed to identify and review publications relating to the diagnosis of joint hypermobility and instability and develop an evidence based approach to the diagnosis of children presenting with joint hypermobility and related symptoms.</p> <p>Methods</p> <p>We searched Medline for papers with an emphasis on the diagnosis of joint hypermobility, including Heritable Disorders of Connective Tissue (HDCT).</p> <p>Results</p> <p>3330 papers were identified: 1534 pertained to instability of a particular joint; 1666 related to the diagnosis of Ehlers Danlos syndromes and 330 related to joint hypermobility.</p> <p>There are inconsistencies in the literature on joint hypermobility and how it relates to and overlaps with milder forms of HDCT. There is no reliable method of differentiating between Joint Hypermobility Syndrome, familial articular hypermobility and Ehlers-Danlos syndrome (hypermobile type), suggesting these three disorders may be different manifestations of the same spectrum of disorders. We describe our approach to children presenting with joint hypermobility and the published evidence and expert opinion on which this is based.</p> <p>Conclusion</p> <p>There is value in identifying both the underlying genetic cause of joint hypermobility in an individual child and those hypermobile children who have symptoms such as pain and fatigue and might benefit from multidisciplinary rehabilitation management.</p> <p>Every effort should be made to diagnose the underlying disorder responsible for joint hypermobility which may only become apparent over time. We recommend that the term "Joint Hypermobility Syndrome" is used for children with symptomatic joint hypermobility resulting from any underlying HDCT and that these children are best described using <b>both </b>the term Joint Hypermobility Syndrome <b>and </b>their HDCT diagnosis.</p

Growth characteristics in individuals with osteogenesis imperfecta in North America: results from a multicenter study.

PurposeOsteogenesis imperfecta (OI) predisposes people to recurrent fractures, bone deformities, and short stature. There is a lack of large-scale systematic studies that have investigated growth parameters in OI.MethodsUsing data from the Linked Clinical Research Centers, we compared height, growth velocity, weight, and body mass index (BMI) in 552 individuals with OI. Height, weight, and BMI were plotted on Centers for Disease Control and Prevention normative curves.ResultsIn children, the median z-scores for height in OI types I, III, and IV were -0.66, -6.91, and -2.79, respectively. Growth velocity was diminished in OI types III and IV. The median z-score for weight in children with OI type III was -4.55. The median z-scores for BMI in children with OI types I, III, and IV were 0.10, 0.91, and 0.67, respectively. Generalized linear model analyses demonstrated that the height z-score was positively correlated with the severity of the OI subtype (P &lt; 0.001), age, bisphosphonate use, and rodding (P &lt; 0.05).ConclusionFrom the largest cohort of individuals with OI, we provide median values for height, weight, and BMI z-scores that can aid the evaluation of overall growth in the clinic setting. This study is an important first step in the generation of OI-specific growth curves

Binding deficits in visual short-term memory in patients with temporal lobe lobectomy.

Classical views of the medial temporal lobe (MTL) have established that it plays a crucial role in long-term memory (LTM). Here we demonstrate, in a sample of patients who have undergone anterior temporal lobectomy for the treatment of pharmacoresistant epilepsy, that the MTL additionally plays a specific, causal role in short-term memory (STM). Patients (n=22) and age-matched healthy control participants (n=26) performed a STM task with a sensitive continuous report measure. This paradigm allowed us to examine recall memory for object identity, location and object-location binding, independently on a trial-by-trial basis. Our findings point to a specific involvement of MTL in object-location binding, but, crucially, not retention of either object identity or location. Therefore the MTL appears to perform a specific computation: binding disparate features that belong to a memory. These results echo findings from previous studies, which have identified a role for the MTL in relational binding for LTM, and support the proposal that MTL regions perform such a function for both STM and LTM, independent of the retention duration. Furthermore, these findings and the methodology employed here may provide a simple, sensitive and clinically valuable means to test memory dysfunuction in MTL disorders