Healthcare Staffs’ Experiences and Perceptions of Caring for People with Dementia in the Acute Setting: Qualitative Evidence Synthesis

Background Dementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting. Objectives The aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development. Settings A screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings. Participants Twelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers. Methods Framework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings. Results Key themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia. Conclusions This review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.

Exercise and Lifestyle Therapy Improves Weight Maintenance in Young People With Psychosis: A Service Evaluation

INTRODUCTION Young people with psychosis typically have higher rates of premature cardiovascular disease and metabolic disorders compared to non-psychotic peers. This has been primarily due to a sedentary lifestyle, poor diet composition, misuse of harmful substances and higher rates of obesity and smoking. When prescribed obesogenic antipsychotic medication, a weight gain of >12 kg within 2 years is typical. PURPOSE: To examine the benefits of a 12 wk exercise and lifestyle intervention entitled ‘Supporting Health and Promoting Exercise’ (SHAPE) for young people recently diagnosed with psychosis. METHODS Participants (n=26; 8 females; mean age 27.7 ± 5.1) engaged in weekly 45’ education sessions on healthy lifestyle behaviors, including: managing anxiety and depression, mindfulness and relaxation training, substance misuse, smoking cessation, healthy eating and nutritional advice, dental and sexual health care. This was followed by a 45’ exercise session including activities such as circuit and resistance training, yoga, and badminton, led by qualified exercise instructors. Anthropometric data were measured at baseline, 12 wk and 12 month post-intervention. Lifestyle behaviors and clinical measurements, including resting heart rate, blood pressure, total cholesterol, triglycerides, HbA1c and prolactin, were assessed at baseline and 12 months post-intervention as part of their routine clinical care plan. Significant differences over time were assessed using Paired Sample t-tests. RESULTS SHAPE participants (n=26) presented with first episode psychosis (n=11), schizophrenia (n=11), bipolar disorder (n=2), at risk mental state (n=1), and persistent delusion disorder (n=1) of which 52% were prescribed highly obesogenic antipsychotic medications (Clozapine and Olanzepine). Mean baseline data suggests participants were at an increased health risk due to elevated values in mean BMI (70% were overweight or obese), waist circumference, resting heart rate, and triglycerides (see Table 1 & 2). Over 50% reported smoking daily and 85% had elevated resting blood pressure (>120/80 mm Hg). At 12 wk post-intervention, no changes were observed in mean BMI or waist circumference (see Table 1); 19 participants either maintained (mean 0.5 kg: range ± 2 kg) or decreased (mean -5.7 kg: range 2-7 kg) weight; 7 participants increased weight (mean 4.9 kg: range 2.0-9.6 kg). At 12 month post-intervention (n=16), no change was evident in mean BMI, waist circumference, or any other clinical variable (see Table 2). Positive impacts on lifestyle behaviors included 7 participants eating ~400g of fruit/vegetables daily, 2 ceased substance use, 2 ceased alcohol use, 4 ceased smoking and 5 were less sedentary. CONCLUSION At the start of the programme, participants were already at an increased risk for cardiometabolic disorders. Findings suggest that SHAPE supported young people with psychosis to: -attenuate their physical health risk following a 12 wk exercise and lifestyle intervention which were sustained at 12 months follow up. -make positive lifestyle behavior changes leading to sustained improvements in weight maintenance and physical health.

Supporting people with Autism Spectrum Disorders in leisure time: impact of an University Volunteer Program, and related factors

La participación social tiene efectos positivos en salud mental y física, y puede tomarse como un indicador de calidad de vida. Sin embargo, la participación de personas con discapacidad en su comunidad es aún escasa, especialmente para las personas con autismo. En este trabajo evaluamos el grado de satisfacción con un programa de voluntariado universitario dirigido a personas con autismo para apoyar actividades de ocio y tiempo libre (APUNTATE). Un total de 159 familias de usuarios y 230 voluntarios cumplimentaron un cuestionario de satisfacción que identificó las áreas en las que el programa tenía más impacto. Los resultados mostraron una alta satisfacción general tanto en usuarios como en voluntarios, aunque algunas características personales de los usuarios generaron leves diferencias. Los aspectos más valorados fueron la organización del programa, la formación y tutorización continua que se ofrecía a los voluntarios. Otra característica del programa, ampliamente valorada, fue la capacidad de éste de adaptar los apoyos a las necesidades individuales de usuarios y voluntarios. Este trabajo pone de manifiesto que la universidad pública puede implementar con éxito programas de apoyos para promover la participación social. Estos programas pueden favorecen el desarrollo personal, favorecer el cambio de actitudes hacia las personas con discapacidad y mejorar las perspectivas de empleo de los estudiantes.

Why Does Employment Discrimination Persist against People with Mental Illness? Effects of Negative Stereotypes, Power, and Differential Discrimination

Mental illness affects a sizable minority of Americans at any given time, yet many people with mental illness (hereafter PWMI) remain unemployed or underemployed relative to the general population. Research has suggested that part of the reason for this is discrimination toward PWMI. This research investigated mechanisms that affect employment discrimination against PWMI. Drawing from theories on stigma and power, three studies assessed 1) the stereotyping of workers with mental illness as unfit for workplace success, 2) the impact of positive information on countering these negative stereotypes, and whether negatively-stereotyped conditions elicited discrimination; and 3) the effects of power on mental illness stigma components. I made a series of predictions related to theories on the Stereotype Content Model, illness attribution, the contact hypothesis, gender and mental health, and power. Studies tested predictions using, 1) an online vignette survey measuring attitudes, 2) an online survey measuring responses to fictitious applications for a middle management position, and 3) a laboratory experiment in which some participants were primed to feel powerful and some were not. Results of Study 1 demonstrated that PWMI were routinely stigmatized as incompetent, dangerous, and lacking valued employment attributes, relative to a control condition. This was especially evident for workers presented as having PTSD from wartime service and workers with schizophrenia, and when the worker was a woman. Study 2 showed that, although both war-related PTSD and schizophrenia evoke negative stereotypes, only schizophrenia evoked hiring discrimination. Finally, Study 3 found no effect of being primed to feel powerful on stigmatizing attitudes toward a person with symptoms of schizophrenia. Taken together, findings suggest that employment discrimination towards PWMI is driven by negative stereotypes; but, stereotypes might not lead to actual hiring discrimination for some labeled individuals.

Investigating assistive technology to support memory for people with cognitive impairments

Technologies such as automobiles or mobile phones allow us to perform beyond our physical capabilities and travel faster or communicate over long distances. Technologies such as computers and calculators can also help us perform beyond our mental capabilities by storing and manipulating information that we would be unable to process or remember. In recent years there has been a growing interest in assistive technology for cognition (ATC) which can help people compensate for cognitive impairments. The aim of this thesis was to investigate ATC for memory to help people with memory difficulties which impacts independent functioning during everyday life. Chapter one argues that using both neuropsychological and human computing interaction theory and approaches is crucial when developing and researching ATC. Chapter two describes a systematic review and meta-analysis of studies which tested technology to aid memory for groups with ABI, stroke or degenerative disease. Good evidence was found supporting the efficacy of prompting devices which remind the user about a future intention at a set time. Chapter three looks at the prevalence of technologies and memory aids in current use by people with ABI and dementia and the factors that predicted this use. Pre-morbid use of technology, current use of non-tech aids and strategies and age (ABI group only) were the best predictors of this use. Based on the results, chapter four focuses on mobile phone based reminders for people with ABI. Focus groups were held with people with memory impairments after ABI and ABI caregivers (N=12) which discussed the barriers to uptake of mobile phone based reminding. Thematic analysis revealed six key themes that impact uptake of reminder apps; Perceived Need, Social Acceptability, Experience/Expectation, Desired Content and Functions, Cognitive Accessibility and Sensory/Motor Accessibility. The Perceived need theme described the difficulties with insight, motivation and memory which can prevent people from initially setting reminders on a smartphone. Chapter five investigates the efficacy and acceptability of unsolicited prompts (UPs) from a smartphone app (ForgetMeNot) to encourage people with ABI to set reminders. A single-case experimental design study evaluated use of the app over four weeks by three people with severe ABI living in a post-acute rehabilitation hospital. When six UPs were presented through the day from ForgetMeNot, daily reminder-setting and daily memory task completion increased compared to when using the app without the UPs. Chapter six investigates another barrier from chapter 4 – cognitive and sensory accessibility. A study is reported which shows that an app with ‘decision tree’ interface design (ApplTree) leads to more accurate reminder setting performance with no compromise of speed or independence (amount of guidance required) for people with ABI (n=14) compared to a calendar based interface. Chapter seven investigates the efficacy of a wearable reminding device (smartwatch) as a tool for delivering reminders set on a smartphone. Four community dwelling participants with memory difficulties following ABI were included in an ABA single case experimental design study. Three of the participants successfully used the smartwatch throughout the intervention weeks and these participants gave positive usability ratings. Two participants showed improved memory performance when using the smartwatch and all participants had marked decline in memory performance when the technology was removed. Chapter eight is a discussion which highlights the implications of these results for clinicians, researchers and designers.

Awareness and practices on eye effects among people with diabetes in rural Tamil Nadu, India.

Background: Recently eye effects of Diabetes Mellitus (DM) are an important concern due to increase in its trend especially in developing countries. Objectives: To assess the awareness related to eye effects of DM and its prevention practices among people with diabetes. Methods: This cross sectional study was conducted from January 2013 to April 2013 in Villupuram district of Tamil Nadu, India. All 105 people with diabetes from the service area of two sub-centres were included. Data on socio demographic details, history of DM, awareness on systemic complications of DM, effects of DM on eyes, practice on regular blood check-up, eye examination and source of information were collected by interview technique using a structured questionnaire. Univariate and multiple logistic regression analysis were done to assess the association of awareness of eye examination with socio-demographic variables. Results: Mean age of the study population was 56.7 years. About 93 people with diabetes (88.6%) tested their blood sugar at least once in every 3 months. About 80 people with diabetes (76.2%) were aware of at least one systemic complication of DM. Although 78 (74.3%) people with diabetes were aware that DM could affect the eyes, majority of this group (68, 87.2%) did not know the specific effects of DM on eyes. In this group, about 28(35.9%) people with diabetes were not aware of the reasons for eye effects, while others mentioned that persistent high blood sugar level (n=26, 33.3%), longer duration of DM (n=14, 17.9%) and lifestyle (n=10, 12.8%) were the reasons for the eye effects of DM. Only 31 (29.5%) of them knew that their eyes must be regularly examined. People with diabetes who had post-secondary and above (>10th standard) level of education had significantly higher awareness on examination of eye (Adjusted OR=19.63). Conclusion: Although awareness of people with diabetes on systemic effects of DM was more, their awareness on specific eye effects and need for regular screening was low. Systematic efforts are required to increase awareness on eye effects and importance of regular screening in this population.

The reliability and utility of spirometry performed on people with asthma in community pharmacies

Does therapeutic writing help people with long-term conditions? Systematic review, realist synthesis and economic considerations

Background Writing therapy to improve physical or mental health can take many forms. The most researched model of therapeutic writing (TW) is unfacilitated, individual expressive writing (written emotional disclosure). Facilitated writing activities are less widely researched. Data sources Databases including: MEDLINE, EMBASE, PsychINFO, Linguistics and Language Behavior Abstracts, AMED, and CINHAL were searched from inception to March 2013. Review methods Four TW practitioners provided expert advice. Study procedures were conducted by one reviewer and checked by a second. Randomised controlled trials (RCTs) and non-randomised comparative studies were included. Quality was appraised using the Cochrane risk of bias tool. Unfacilitated and facilitated TW studies were analysed separately under ICD-10 chapter headings. Meta-analyses were performed where possible using Revman 5.2. Costs were estimated from an NHS perspective and three cost-consequence case studies were prepared. Realist synthesis followed RAMESES guidelines. Objectives To review the clinical and cost-effectiveness of TW for people with long-term health conditions (LTCs) compared to no writing, or other controls, reporting any relevant clinical outcomes. To conduct a realist synthesis to understand how TW might work, and for whom. Results From 14,658 unique citations, 284 full text papers were reviewed and 64 studies (58 RCTs) were included in the final effectiveness reviews. Five studies examined facilitated TW, these were extremely heterogeneous with unclear or high risk of bias, but suggested that facilitated TW interventions may be beneficial in individual LTCs. Unfacilitated expressive writing was examined in 59 studies of variable, or unreported, quality. Overall there was very little or no evidence of any benefit reported in the following conditions (number of studies): HIV (six); breast cancer (eight); gynaecological and genitourinary cancers (five); mental health (five); asthma (four); psoriasis (three); chronic pain (four). In inflammatory arthropathies (six) there was a reduction in disease severity (n= 191, standardised mean difference (SMD) - 0.61 [95% confidence intervals (95% CI) -0.96, -0.26]) in the short term on meta-analysis of four studies. For all other LTCs there was either no, or sparse, data with no, or inconsistent, evidence of benefit. Meta-analyses conducted across all the LTCs provided no evidence that unfacilitated EW had any effect on depression at short term (n= 1,563, SMD -0.06, 95% CI -0.29 to 0.17, substantial heterogeneity), or long term (n= 778, SMD-0.04 95% CI -0.18 to 0.10, little heterogeneity) follow up, or on anxiety, physiological or biomarker-based outcomes. One study reported costs, none reported cost-effectiveness, twelve reported resource use; meta-analysis suggested reduced medication use but no impact on health centre visits. Estimated costs of intervention were low, but there was insufficient evidence to judge cost-effectiveness. Realist review findings suggested that facilitated TW is a complex intervention and group interaction contributes to the perception of benefit. It was unclear from the available data who might benefit most from facilitated TW. Limitations Difficulties with developing realist review programme theory meant that mechanisms operating during TW remain obscure. Conclusions Overall there is little evidence to support the effectiveness or cost-effectiveness of unfacilitated expressive writing interventions in people with LTCs. Further research focussed on facilitated TW in people with LTCs could be informative.

Edoxaban for preventing stroke and systemic embolism in people with non-valvular atrial fibrillation: A Single Technology Appraisal. Evidence Review Group Report to NICE

1.1 Edoxaban is recommended, within its marketing authorisation, as an option for preventing stroke and systemic embolism in adults with non-valvular atrial fibrillation with one or more risk factors, including: congestive heart failure hypertension diabetes prior stroke or transient ischaemic attack age 75 years or older

Tthe right to effective judicial protection and disability: the convention on the rights of persons with disabilities

On 13 December 2006, the General Assembly of the United Nations adopted the Convention on the Rights of Persons with Disabilities (CRPD). It is the first comprehensive human rights treaty of the 21st century. The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. Precisely, the Convention marks a 'paradigm shift' in attitudes and approaches to persons with disabilities The Convention contains two articles directly connected with judicial effective protection, one more than the other, but on the other hand, one cannot be understood without the other. Both articles are Article 12 –Equal recognition before the law- and Article 13 –access to justice- As a scholar in Procedural Law, my contribution to the International Scientific Congress on Private Law of the Philippines and Spain aims to enshrine the relevant importance of the both provisions that guarantee effective judicial protection for persons with disabilities in order to analyze, subsequently, the implementation of them in Spanish legislation

SOLUTIONS: Assistive Technology for People with Brain Injury, February 22, 2016

The Brain A project of the Iowa Department of Public Health and the Iowa Advisory Council on Brain Injuries, produced with assistance from the Iowa Program for Assistive Technology University of Iowa Center for Disabilities and Development and Easter Seals This booklet was supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H21MC26929 titled: Traumatic Brain Injury Implementation. This information or content and conclusions are those of the authors/s and should not be construed as the official position or policy of, nor should any endorsements be inferred by, HRSA, HHS, or the U.S. Government.

An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.

Subjective Aspects of People with Chronic Ulcers: a Qualitative Study in Brazil and Portugal

Introduction: The experience built in the process of living with chronic ulcer is marked by changes such as the inability to work, to relate socially and causes the need to adapt to a routine care. Understanding this network of meanings is important to develop techniques of individual or collective care. Objective: To understand impregnated subjectivities in the everyday experiences of Brazilian and Portuguese patients with chronic ulcers, in the light of the Oral History of life. Method: Comparative study with a qualitative approach, using Oral History as method and technique. The network of collaborators, formed by males and females, aged 39-82 years, was structured into two groups, one consisting of 06 people in Natal/RN, Brazil and another composed of 10 people in Évora/Portugal. In both groups, the narratives were collected through open questions, which were recorded, transcribed and analyzed by the technique of thematic content analysis. Results: Through the analysis, three themes were revealed: Social repercussion in Brazil and in Portugal; Trajectory of theinjured person; and Coping mechanisms. Conclusion: Changes were observed in social life, leading contributors to isolation, in addition to confronting the stigma experienced. There were also identified points as the reinterpretation of chronic wound carrier about their disease and coping strategies of their chroniccondition.

Education for all : providing curriculum for students with disabilities in a standards-based environment : implications for Queensland schools

This report investigates lessons learned by educators in the United States when providing a standards-based curriculum for all students including Students with Disabilities (SWD). Assumptions about implementation of these lessons are then made to the Queensland school system. Queensland mainstream schools currently provide a standards-based curriculum for over sixteen thousand-four hundred students with mild-moderate disabilities and appear to be challenged by this new educational reform and its implications to school and teacher practices, beliefs and attitudes. The analysis of US research, literature and educational policy for this report, has provided some implications for Queensland schools in the areas of student participation, achievement and curriculum planning to provide an “education for all”. The analysis and comparison of legislation and policy, which demonstrates some significant similarities, provides greater validity for the application of lessons learned in the United States to the Queensland context. The key findings about lessons learned provides Queensland schools with some assumptions as to why and how they need to refocus school leader and teachers’ practices, beliefs and attitudes to provide an “education for all”. These lessons infer that school leaders and teachers to explicitly focus on equity, expectation, accountability, performance, alignment and collaboration so that effective curriculum is provided for SWD, indeed all students, in the Queensland standards-based curriculum environment.