Virtual Clinical Trials: One Step Forward, Two Steps Back

Virtual clinical trials have entered the medical research landscape. Today’s clinical trials recruit subjects online, obtain informed consent online, send treatments such as medications or devices to the subjects’ homes, and require subjects to record their responses online. Virtual clinical trials could be a way to democratize clinical research and circumvent geographical limitations by allowing access to clinical research for people who live far from traditional medical research centers. But virtual clinical trials also depart dramatically from traditional medical research studies in ways that can harm individuals and the public at large. This article addresses the issues presented by virtual clinical trials with regard to: (1) recruitment methods; (2) informed consent; (3) confidentiality; (4) potential risks to the subjects; and (5) the safety and efficacy of treatments that are approved

Developing Capacity and a Culturally Appropriate Mindfulness Intervention for Inner City Survivors of Violence

This project examines the acceptability and cultural relevance of Mindfulness for low-income communities of color most affected by urban/gun violence. The burden of violence extends to classmates, friends, family members, and communities through adverse effects on parenting, quality of life, economic productivity, and social cohesion

Needing permission: The experience of self-care and self-compassion in nursing: A constructivist grounded theory study

Background Healthcare is delivered in a culture of ongoing change, with many nurses highlighting the impact of this on their own wellbeing. However, there is a dearth of literature focusing on how nurses care for themselves as they try to provide compassionate care in a challenging job. Objectives This study explored nurses’ experience of self-care and self-compassion and how this may relate to compassionate care giving towards patients. Design A constructivist grounded theory approach was used to develop a theoretical understanding of nurses’ experience. Settings This study included participants from two National Health Service (NHS) Trusts within the United Kingdom (UK). Participants Purposive and theoretical sampling were used to recruit general, mental health and learning disability nurses, at different levels of seniority. Method Between September 2015 and March 2016 semi-structured interviews were conducted. Analysis was completed in line with the process set out within constructivist grounded theory. Using constant comparison and memo writing, analysis moved from initial coding to focused coding, through to theoretical coding, resulting in the production of core concepts and categories, and theory development. Results Thirty participants were included in the study. Three concepts were derived from the data: (1) ‘Hardwired to be caregivers’ – vocation versus role, (2) needing a stable base, (3) Managing the emotions of caring. All three concepts linked to a core process: needing permission to self-care and be self-compassionate. Nurses needed permission from others and from themselves to be self-caring and self-compassionate. An inability to do this affected their wellbeing and compassionate care giving to others. Interviewees described how they struggled particularly with self-compassion. Helping nurses to be proactively more self-caring and self-compassionate may increase their ability to manage emotions and prevent some of the negative consequences of nursing such as burnout and compassion fatigue. A conceptual framework is proposed which identifies that formal permission (e.g., within nursing guidance) may be necessary for some nurses to look after themselves. Conclusion Findings identified the need for permission as key in enabling nurses to self-care and be self-compassionate, which may facilitate them to address patients’ needs. The study highlights the importance of self-care and self-compassion within nursing education and nursing guidance

Social connections among parents of pre-school-age children in an inner and outer area of Melbourne, Australia

AbstractParents’ social connectedness is an important factor in child health and development outcomes and has been strongly linked to place. This study aimed to compare social connectedness amongst parents in inner versus outer-suburbs of Melbourne using a mixed methods approach. Parents were recruited via playgroups, mother’s groups and preschools and interviewed face- to-face regarding their social networks, with a second open-ended interview focusing on parents’ ideals and experiences of raising children in their current location. Parents in the two areas identified a similar number of contacts, but had differently structured networks. Outer-suburban parents were more likely than inner-suburban parents to have very few contacts, and to name their general practitioner as among their significant contacts. They were less likely to have more extended networks or to include neighbours among their contacts. Parents in both areas had met at least some of their network members through local organisations or services with outer-suburban parents having met a greater proportion of their contacts in this way. Qualitative interview data supported the network analysis revealing the different priorities parents placed on neighbours, barriers experienced in connecting with neighbours in the outer- suburbs and the consequent heavy reliance on organised activities to form social connections. The different types of social connections parents in inner and outer Melbourne made in relation to raising their preschool-aged children revealed in this study have implications for both service delivery and social planning of new developments

The Future of Southeast Asia: Challenges of Child Sex Slavery and Trafficking in Cambodia

The Cambodia Project: During 2000-2001, The Future Group launched its inaugural project in Southeast Asia to address child sex slavery and trafficking. For nearly one-hundred days, a deployment team of four worked with local organizations in Cambodia to implement new ideas to help the children affected by this crisis of international proportions. Initially, The Future Group had planned to work to implement five projects in Cambodia. After just three weeks, the deployment team was significantly ahead of schedule and began to actively identify new areas to pursue. Critical areas of need at local centres were addressed and projects that increased the scope of advancing new ideas were completed. The following areas were addressed: Building Coalitions; Prevention Education; Responsible Tourism; Recovery Centre; Reintegration; Grassroots Skills Training; Regional Expansion of Operations; Policy Development; International Campaign; and Action Research

Understanding pain in people who have had breast cancer

Background: The number of people surviving breast cancer is increasing. Pain is rarely a symptom of breast cancer and for many individuals their first experience of cancer pain is during treatment. Individuals who have been treated for cancer may experience ‘long-term effects’, symptoms which arise from treatment but persist into remission, or ‘late effects’, symptoms which commence after remission. This is an emerging area in the cancer literature and the prevalence, degree and management of these effects are currently being explored. Electronic pain monitoring offers a potential solution to the clinical issue of managing pain in survivors of breast cancer, but at present pain in breast cancer survivors is not routinely monitored. It is yet to be found exactly which information and at what frequency will be most reliable, tolerable and useful. Aims: Therefore this study aimed to compare pain diaries completed either when pain occurred (pain event driven) or at specific times (time driven). These online pain diaries included rating pain on a pain scale, its interference with daily activities and a requirement to predict pain for the following 12 hours. The study also explored how the individuals experienced using the online diaries and the pain scales. Design & methods: The study used a mixed methods case series design consisting of visual analysis, correlation and thematic analysis. Ten participants were recruited who had all previously been diagnosed with breast cancer and were at least 2 years post-surgery and currently cancer-free, having received a number of different treatments. Participants were required to complete pain diaries, including predicting their pain, over a 12 day period switching between pain event driven and time driven (twice daily) schedules according to a predetermined pattern. Participants then took part in a semi-structured interview and a scaling task involving the 10 point pain scale. Results: Pain levels and interference from pain varied greatly within and between individuals. The total number of diaries completed by each participant varied from four to seventeen. There were no significant differences in responses between the two diary types, and participants did not express a strong preference for one over another. The majority of predictions made were either ‘same as today’ or ‘don’t know’. It was not possible to determine prediction accuracy in most cases. Thematic analysis of interview data generated three meta-themes: (1) making sense of experiences, (2) uncertainties about the future and (3) research is beneficial. Conclusions: This technology has shown great promise as an engaging, practical way to monitor pain. Predicting pain remains a difficult yet interesting task for participants. Limitations and wider implications are discussed

Barriers and enablers for school leaders implementing PB4L Tier 2 with fidelity in New Zealand secondary schools : a thesis presented in partial fulfilment of the requirements for the degree of Master of Education, Educational Administration and Leadership Subject at Massey University, Manawatū, New Zealand

This thesis explores the barriers and enablers to implementing Positive Behaviour for Learning (PB4L) Tier 2 with fidelity in New Zealand secondary schools. PB4L was introduced to New Zealand schools in 2010. It provides a framework that schools use to guide the implementation of evidence-based practice with the goal of reducing problem behaviour and providing a positive school culture. With a focus on evidence-based practice, fidelity of implementation is a core principle of PB4L. PB4L consists of three tiers that provide a continuum of behaviour supports for students. Tier 2 of the continuum targets approximately 15% of students within a school and offers small group response before students develop habitual patterns of behaviour. This mixed method, sequential explanatory design was conducted in two phases. In Phase I a quantitative survey was administered to principals and Tier 2 team leaders in New Zealand secondary schools. This was used to identify the extent to which schools were implementing Tier 2 interventions within their school, and to the identify barriers and enablers schools were experiencing in implementing PB4L Tier 2. In Phase II qualitative data was collected through semi-structured interviews with PB4L Tier 2 team leaders who had a wide range of experiences in the implementation of PB4L Tier 2, adding depth of explanation to the quantitative data. A number of barriers and enablers were identified, often the barrier or enabler was a different side of the same coin. Key enablers that emerged from this mixed methods research included the facilitation of shared learning between secondary schools, schools establishing strong external relationships with outside agencies, and proactive school leadership. Significant barriers included the time investment required to achieve ‘fidelity’ in interventions, efficient access to data, the complexity of the secondary environment and the limited range of easily resourced evidence-based interventions for use in a secondary school context

Using Mindfulness for Increasing Provider Capacity to Support Inner City Survivors of Violence [English and Spanish versions]

A Spanish translation of this publication is available to download under Additional Files below. Mindfulness is recognized as an evidence-based practice that can improve a person’s physical and emotional health and well-being. This research project examined the cultural relevance and potential acceptability of mindfulness practices by front-line providers working with a low-income community of color affected by gun homicide

A good place to raise a family? Comparing parents, service-providers\u27, and media perspectives of the inner and outer suburban areas of Melbourne

In Australia, the suburbs have historically been the favoured place to raise children. However this is being challenged both by social change and government policy encouraging innerurban renewal. We examined how inner-urban areas compare with more traditional suburban locations as places to raise a family. Recognising that there are many influences on perceptions of place, we included the opinions of parents, service-providers and the media in the two locations.Research focused on two municipalities in Melbourne, one located >25km and the other <10km from the CBD. Themes were obtained and compared from in-depth interviews with parents, serviceproviders and analysis of municipality-specific and state-wide newspaper articles.Service provision was the only theme common at all levels of analysis. For all other themes, differences occurred between perspectives of service-providers, media and parents, as well as between the two residential locations. These in-depth snapshots on the challenges and rewards of raising children in different urban locations can help inform government in planning healthy neighbourhoods that better serve the needs of contemporary Australian families

Use and Cost of Hospitalization in Dementia: Longitudinal Results from a Community-Based Study

OBJECTIVES: The aim of this study is to examine the relative contribution of functional impairment and cognitive deficits on risk of hospitalization and costs. METHODS: A prospective cohort of Medicare beneficiaries aged 65 and older who participated in the Washington Heights-Inwood Columbia Aging Project (WHICAP) were followed approximately every 18 months for over 10 years (1805 never diagnosed with dementia during study period, 221 diagnosed with dementia at enrollment). Hospitalization and Medicare expenditures data (1999-2010) were obtained from Medicare claims. Multivariate analyses were conducted to examine (1) risk of all-cause hospitalizations, (2) hospitalizations from ambulatory care sensitive (ACSs) conditions, (3) hospital length of stay (LOS), and (4) Medicare expenditures. Propensity score matching methods were used to reduce observed differences between demented and non-demented groups at study enrollment. Analyses took into account repeated observations within each individual. RESULTS: Compared to propensity-matched individuals without dementia, individuals with dementia had significantly higher risk for all-cause hospitalization, longer LOS, and higher Medicare expenditures. Functional and cognitive deficits were significantly associated with higher risks for hospitalizations, hospital LOS, and Medicare expenditures. Functional and cognitive deficits were associated with higher risks of for some ACS but not all admissions. CONCLUSIONS: These results allow us to differentiate the impact of functional and cognitive deficits on hospitalizations. To develop strategies to reduce hospitalizations and expenditures, better understanding of which types of hospitalizations and which disease characteristics impact these outcomes will be critical