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Participatory Co-design: Approaches to Enable People Living with Challenging Health Conditions to Participate in Design Research
Publication . Neves, S.; Macdonald, A.; Poole, M.; Dening, K. Harrison
People are living longer and are affected by challenging chronic, lifestyle- and age-related conditions such as dementia and stroke. The increasing number of people living with challenging health conditions highlights social concerns and their implications for the successful delivery of healthcare services. Research on improving dementia care [Alzheimer’s Disease International (2016) World Alzheimer Report 2016: Improving healthcare for people living with dementia: coverage, quality and costs now and in the future. Alzheimer’s Disease International, London] shows a need to involve people living with dementia, their families, and health and social care professionals when designing improvements to their healthcare services. In addition, involving patients recovering from stroke in discussions about rehabilitation services has been considered important to enable making decisions that better address their health care needs [Kristensen HK, Tistad M, Koch LV, Ytterberg C (2016) The importance of patient involvement in stroke rehabilitation. PLOS One 11(6). 10.1371/journal.pone.0157149]. This paper presents two case studies of a participatory co-design approach used to engage people; (a) living with dementia, and (b) recovering from stroke in design research, where co-design-led methods were used to enable participation. The paper describes the importance of each of the roles of—and relationships between—individuals involved in the participatory co-design research process and how people living with challenging health conditions are enabled to participate in a form of three-way relationship. It discusses lessons learned, reflections and recommendations for a new collaborative model for people living with challenging health conditions engagement to enable a more equal and reciprocal partnership for participation in design research into healthcare improvements.
SANS/WANS Time-resolving Neutron Scattering Studiesof Polymer Phase Transitions Using NIMROD
Publication . Mitchell, Geoffrey Robert; Bowron, Daniel; Mateus, Artur; Bártolo, Paulo; Gkourmpis, Thomas; Phomphrai, Khamphee; Lopez, Daniel; Davis, Fred
ABSTRACT We use new neutron scattering instrumentation to follow in a single quantitative time-resolving experiment, the three key scales of structural development which accompany the crystallisation of synthetic polymers. These length scales span 3 orders of magnitude of the scattering vector. The study of polymer crystallisation dates back to the pioneering experiments of Keller and others who discovered the chain-folded nature of the thin lamellae crystals which are normally found in synthetic polymers. The inherent connectivity of polymers makes their crystallisation a multiscale transformation. Much understanding has developed over the intervening fifty years but the process has remained something of a mystery. There are three key length scales. The chain folded lamellar thickness is ∼ 10nm, the crystal unit cell is ∼ 1nm and the detail of the chain conformation is ∼ 0.1nm. In previous work these length scales have been addressed using different instrumention or were coupled using compromised geometries. More recently researchers have attempted to exploit coupled time-resolved small-angle and wide-angle x-ray experiments. These turned out to be challenging experiments much related to the challenge of placing the scattering intensity on an absolute scale. However, they did stimulate the possibility of new phenomena in the very early stages of crystallisation. Although there is now considerable doubt on such experiments, they drew attention to the basic question as to the process of crystallisation in long chain molecules. We have used NIMROD on the second target station at ISIS to follow all three length scales in a time-resolving manner for poly(e-caprolactone). The technique can provide a single set of data from 0.01 to 100Å-1 on the same vertical scale. We present the results using a multiple scale model of the crystallisation process in polymers to analyse the results.
Multiple Approaches to the Diagnosis of Attention Deficit Hyperactivity Disorder
Publication . Rijo, Rui; Martinho, Ricardo; Ge, Xiaocheng
Studies indicate that about 3-7% of school-age children have attention deficit hyperactivity disorder (ADHD). If these disorders are not diagnosed and treated early, its consequences can harshly impair the adult life of the individual. In this context, early diagnosis is critical. Clinical reasoning is a key contributor to the quality of health care. Clinical decisions at the policy level are made within a stochastic domain; decisions for individuals are usually more qualitative. In both cases, poor reasoning can result in an undesirable outcome. Clinical decisions are most typically communicated in a document through free text. Text has significant limitations (particularly ambiguity and poor structuring) whether used for analysis, or to explain the decision-making process. In safety engineering, similar problems are faced in conveying safety arguments to support certification. As a result, approaches have been developed to conveying arguments in ways which improve communication and which are more amenable to analysis. The Goal Structuring Notation (GSN) – a graphical argumentation notation for safety – was developed for those reasons. It has evolved to be one of the most widely used techniques for representing safety arguments. The use of text-mining techniques is another approach in the process of achieving or suggesting a diagnosis to the physician. This paper investigates the relative feasibility of these two approaches and discuss their complementation. Based on a case example, the benefits and problems of adopting GSN and ontology approach in clinical decision-making for ADHD are discussed and illustrated.
Co-designing a Care Plan Guide App to Support Early Conversations About End-of-Life Care in Dementia
Publication . Neves, S.; Macdonald, A.; McLellan, E.; Poole, M.; Harrison-Dening, K.; Tucker, S.; Bamford, C.; Robinson, L.
Talking about death and end-of-life care (EoLC) can be a sensitive topic for people affected by dementia and their families. However, recent research [1] has identified the need for people living with dementia (PLwD) to start planning timely discussions about their future care to help their family and professional carers to confidently make decisions on their behalf when they are no longer able to do so themselves [2]. This paper describes a five-stage iterative co-design approach aimed at understanding the type and nature of these sensitive discussions and developing a resource to support PLwD, their families and carers. The resource took the form of a Care Plan Guide app, as a tool to help initiate early discussions about anticipatory care planning [3] in dementia for PLwD to ensure good personalized care and that important wishes were honoured. The paper highlights the importance of the involvement and active collaboration of families living with the illness. It discusses lessons learned, reflections and recommendations for approaching co-designing healthcare digital resources for sensitive EoLC issues that may have wider applications than for PLwD.
Implementing a Pervasive Real-Time Intelligent System for Tracking Critical Events with Intensive Care Patients
Publication . Portela, Filipe; Gago, Pedro; Santos, Manuel Filipe; Machado, José; Abelha, António; Silva, Álvaro; Rua, Fernando
Nowadays, it is increasingly important to utilize intelligent systems to support the decision making process (DMP) in challenging areas such as Intensive Medicine. In Intensive Care Units (ICU), some of the biggest challenges relate both to the number and the different types of available data sources. Even though in such a setting the values for some variables are easy to collect, data collection is still performed manually in particular instances. In order to improve the DMP in ICU, a Pervasive Intelligent Decision Support System, called INTCare was deployed in the ICU of Centro Hospitalar do Porto in Portugal. This system altered the way information is collected and presented. Moreover, the tracking system deployed as a specific module of INTCare – Electronic Nursing Record (ENR) is made accessible anywhere and anytime. The system allows for the calculation of the critical events regarding five variables that are typically monitored in an ICU. Specifically, the INTCare tracking system characterizes a grid that shows the events by type and duration, empowers a warning system to alert the doctors and promotes intuitive graphics that allow care providers to follow the patient care journey. User acceptance was measured through a questionnaire designed in accordance with the Technology Acceptance Model (TAM) and results of implementing the INTCare tracking system, and its interface are reported.