Research participation of individuals with dementia : decisional capacity, informed consent, and considerations for nurse investigators

Decisional capacity is a precious component of personhood and is progressively diminished in dementia. Conducting research with individuals with dementia demands a commitment to ensure the quest for knowledge does not overwhelm the rights of those it is intended to protect. The purposes of this article are to describe current understandings of the concept of decisional capacity, describe recent regulatory developments related to the consideration of additional protections for decisionally impaired adults, and provide recommendations for nurse investigators working with this vulnerable group.

Determinants of participation restriction among community dwelling stroke survivors : a path analysis

Background: Apart from promoting physical recovery and assisting in activities of daily living, a major challenge in stroke rehabilitation is to minimize psychosocial morbidity and to promote the reintegration of stroke survivors into their family and community. The identification of key factors influencing long-term outcome are essential in developing more effective rehabilitation measures for reducing stroke-related morbidity. The aim of this study was to test a theoretical model of predictors of participation restriction which included the direct and indirect effects between psychosocial outcomes, physical outcome, and socio-demographic variables at 12 months after stroke.--------- Methods: Data were collected from 188 stroke survivors at 12 months following their discharge from one of the two rehabilitation hospitals in Hong Kong. The settings included patients' homes and residential care facilities. Path analysis was used to test a hypothesized model of participation restriction at 12 months.---------- Results: The path coefficients show functional ability having the largest direct effect on participation restriction (β = 0.51). The results also show that more depressive symptoms (β = -0.27), low state self-esteem (β = 0.20), female gender (β = 0.13), older age (β = -0.11) and living in a residential care facility (β = -0.12) have a direct effect on participation restriction. The explanatory variables accounted for 71% of the variance in explaining participation restriction at 12 months.---------- Conclusion: Identification of stroke survivors at risk of high levels of participation restriction, depressive symptoms and low self-esteem will assist health professionals to devise appropriate rehabilitation interventions that target improving both physical and psychosocial functioning.

Discharge planning in the emergency department : a comprehensive approach

Discharge planning has become increasingly important, with current trends toward shorter hospital stays, increased health care costs, and more community-based health services. Effective discharge planning ensures the safety and ongoing care for patients,1 and it also benefits health care providers and organizations. It results in shorter hospital stays, fewer readmissions, higher access rates to post-hospitalization services, greater patient satisfaction with the discharge, and improved quality of life and continuity of care.[2] and [3] All acute care patients and their caregivers require some degree of preparation for discharge home—education about their health status, risks, and treatment; help setting health goals and maintaining a good level of self-care; information about community resources; and follow-up appointments and referrals to appropriate community health providers. Inadequate preparation exposes the patient to unnecessary risks of recurrence or complications of the acute complaint, neglect of nonacute comorbidities, mismanagement and side effects of medication, disruption of family and social life, emotional distress, and financial loss.[2], [3] and [4] The result may be re-presentation to the emergency department. It is noteworthy that up to 18% of ED presentations are revisits within 72 hours of the original visit5; many of these are considered preventable.6 It is a primary responsibility of nurses to ensure that patients return to the community adequately prepared and with appropriate support in place. Up to 65% of ED patients are discharged home from the emergency department,7 and the characteristics of the emergency department and its patient population make the provision of a high standard of discharge planning uniquely difficult. In addition, discharge planning is neglected in contemporary emergency nursing—there are no monographs devoted to the subject, and there is little published research. In this article 3 issues are explored: the importance of emergency nurses’ participation in the discharge-planning process, impediments to their participation; and strategies to improve discharge planning in the emergency department.

Student perceptions of the impact of online discussion forum participation on learning outcomes

Choosing the “right” type of technology, either synchronous or asynchronous, to facilitate learning outcomes is a new challenge as the pace of emerging technologies increases and diversifies. Teachers are encouraged to design courses that require collaboration in online learning communities to facilitate the development of higher order thinking skills for life long learning. It is therefore important to gather evidence of the kinds of opportunities afforded to students and whether the students themselves endorse collaborative online tools as a legitimate method of assisting in their learning. This paper outlines the way in which one secondary school has used an online discussion forum to support students in the International Baccalaureate (IB) Diploma Program in enhancing research skills and skills for lifelong learning. The paper considers whether online collaborative tools are perceived by students as a positive way to improve learning outcomes.

Evaluation of community participation for the development of culture-based fisheries in village reservoirs of Sri Lanka

In this paper an attempt is made to identify the socioeconomic characteristics of a community that influences the development and management of culture-based fisheries in village reservoirs of Sri Lanka. Socioeconomic data were collected from 46 agricultural farming communities associated with 47 village reservoirs in Sri Lanka. Principal component analysis indicated that scores of the first principal component were positively influenced by socioeconomic characteristics that are favorable for making collective decisions. These included leadership of the officers, age of the group, percentage of active members of the group, percentage of kinship of the group, percentage of common interest of the group, and percentage of participation of the group. The size of the group had negative effect on the first principal component. The principal component scores of communication were positively related to willingness to pay (P< 0.001). The communities with socioeconomic characteristics favouring collective decision making were in favor of culture-based fisheries. Homogeneity of group characteristics facilitated successful development of culture-based fisheries.

Teaching the economic way of thinking : a new approach to teaching introductory economics in a business degree

In teaching introductory economics there has been a tendency to put a lot of emphasis on imparting abstract models and technical skills to students (Stilwell, 2005; Voss, Blais, Greens, & Ahwesh, 1986). This model building approach has the merit of preparing the grounding for students 10 pursue further studies in economics. However, in a business degree with only a small proportion of students majoring in economics, such an approach tend to alienate the majority of students transiting from high school in to university. Surveys in Europe and Australia found that students complained about the lack of relevance of economics courses to the real world and the over-reliance of abstract mathematical modelling (Kirman, 2001; Lewis and Norris, 1997; Siegfried & Round, 2000). BSB112 Economics 1 is one of the eight faculty core units in the Faculty of Business at QUT, with over 1000 students in each semester. In semester I 2008, a new approach to teaching this unit was designed aiming to achieve three inter-related objectives: (1) to provide business students with a first insight into economic thinking and language, (2) to integrate economic analysis with current Australian social, environmental and political issues, and (3) to cater for students with a wide range of academic needs. Strategies used to achieve these objectives included writing up a new text which departs from traditional economics textbooks in important ways, integrating students' cultures in teaching and learning activities, and devising a new assessment format to encourage development of research skills and applications rather than reproduction of factual knowledge. This paper will document the strategies used in this teaching innovation, present quantitative and qualitative evidence to evaluate this new approach and suggest ways of further improvement.

Does research into sensitive areas do harm? Experiences of research participation after a child’s diagnosis with Ewing’s Sarcoma

Objective: To investigate family members’ experiences of involvement in a previous study (conducted August 1995 to June 1997) following their child’s diagnosis with Ewing’s sarcoma. Design: Retrospective survey, conducted between 1 November and 30 November 1997, using a postal questionnaire. Participants: Eighty-one of 97 families who had previously completed an in-depth interview as part of a national case–control study of Ewing’s sarcoma. Main outcome measures: Participants’ views on how participation in the previous study had affected them and what motivated them to participate. Results: Most study participants indicated that taking part in the previous study had been a positive experience. Most (n = 79 [97.5%]) believed their involvement would benefit others and were glad to have participated, despite expecting and finding some parts of the interview to be painful. Parents whose child was still alive at the time of the interview recalled participation as more painful than those whose child had died before the interview. Parents who had completed the interview less than a year before our study recalled it as being more painful than those who had completed it more than a year before. Conclusions: That people suffering bereavement are generally eager to participate in research and may indeed find it a positive experience is useful information for members of ethics review boards and other “gatekeepers”, who frequently need to determine whether studies into sensitive areas should be approved. Such information may also help members of the community to make an informed decision regarding participation in such research.

Social Participation of Community Dwelling Stroke Survivors [Published Abstract: From the Quality of Care and Outcomes Research in Cardiovascular Disease and Stroke Conference 2009]

Disability following a stroke can impose various restrictions on patients’ attempts at participating in life roles. The measurement of social participation, for instance, is important in estimating recovery and assessing quality of care at the community level. Thus, the identification of factors influencing social participation is essential in developing effective measures for promoting the reintegration of stroke survivors into the community. Data were collected from 188 stroke survivors (mean age 71.7 years) 12 months after discharge from a stroke rehabilitation hospital. Of these survivors, 128 (61 %) had suffered a first ever stroke, and 81 (43 %) had a right hemisphere lesion. Most (n = 156, 83 %) were living in their own home, though 32 (17 %) were living in residential care facilities. Path analysis was used to test a hypothesized model of participation restriction which included the direct and indirect effects between social, psychological and physical outcomes and demographic variables. Participation restriction was the dependent variable. Exogenous independent variables were age, functional ability, living arrangement and gender. Endogenous independent variables were depressive symptoms, state self-esteem and social support satisfaction. The path coefficients showed functional ability having the largest direct effect on participation restriction. The results also showed that more depressive symptoms, low state self-esteem, female gender, older age and living in a residential care facility had a direct effect on participation restriction. The explanatory variables accounted for 71% of the variance in explaining participation restriction. Prediction models have empirical and practical applications such as suggesting important factors to be considered in promoting stroke recovery. The findings suggest that interventions offered over the course of rehabilitation should be aimed at improving functional ability and promoting psychological aspects of recovery. These are likely to enhance stroke survivors resume or maximize their social participation so that they may fulfill productive and positive life roles.

An examination of the knowledge barriers in participatory design and the prospects for embedded research

Participatory design has the moral and pragmatic tenet of including those who will be most affected by a design into the design process. However, good participation is hard to achieve and results linking project success and degree of participation are inconsistent. Through three case studies examining some of the challenges that different properties of knowledge - novelty, difference, dependence - can impose on the participatory endeavour we examine some of the consequences to the participatory process of failing to bridge across knowledge boundaries - syntactic, semantic, and pragmatic. One pragmatic consequence, disrupting the user's feeling of involvement to the project, has been suggested as a possible explanation for the inconsistent results linking participation and project success. To aid in addressing these issues a new form of participatory research, called embedded research, is proposed and examined within the framework of the case studies and knowledge framework with a call for future research into its possibilities.

Faster pairing computations on curves with high-degree twists

Research on efficient pairing implementation has focussed on reducing the loop length and on using high-degree twists. Existence of twists of degree larger than 2 is a very restrictive criterion but luckily constructions for pairing-friendly elliptic curves with such twists exist. In fact, Freeman, Scott and Teske showed in their overview paper that often the best known methods of constructing pairing-friendly elliptic curves over fields of large prime characteristic produce curves that admit twists of degree 3, 4 or 6. A few papers have presented explicit formulas for the doubling and the addition step in Miller’s algorithm, but the optimizations were all done for the Tate pairing with degree-2 twists, so the main usage of the high- degree twists remained incompatible with more efficient formulas. In this paper we present efficient formulas for curves with twists of degree 2, 3, 4 or 6. These formulas are significantly faster than their predecessors. We show how these faster formulas can be applied to Tate and ate pairing variants, thereby speeding up all practical suggestions for efficient pairing implementations over fields of large characteristic.

Web-based and traditional public participation in comprehensive planning : a comparative study

The present paper examines whether the potential advantages of the expanding practice of web-based public participation only complement the benefits of the traditional techniques, or are empowering enough to replace them. The question is examined in a real-world case of neighbourhood revitalization, in which both techniques were practiced simultaneously. Comparisons are made at four major planning junctions, in order to study the contributions of each technique to the qualities of involvement, trust, and empowerment. The results show that web-based participants not only differ from the participants of traditional practices, but they also differ from each other on the basis of their type of web participation. The results indicate that web-based participation is an effective and affective complementary means of public participation, but it cannot replace the traditional unmediated techniques.

Directing for the 360 degree frame : developing a directorial approach to performance capture

What happens when the traditional framing mechanisms of our performance environments are removed and we are forced as directors to work with actors in digital environments that capture performance in 360 degrees? As directors contend with the challenges of interactive performance, the emergence of the online audience and the powerful influence of the games industry, how can we approach the challenges of directing work that is performance captured and presented in real time using motion capture and associated 3D imaging software? The 360 degree real time capture of performance, while allowing for an unlimited amount of framing potential, demands a unique and uncompromisingly disciplined style of direction and performance that has thus far remained unstudied and unquantified. By a close analysis of the groundbreaking work of artists like Robert Zemeckis and the Wetta Digital studio it is possible to begin to quantify what the technical requirements and challenges of 360 degree direction might be, but little has been discovered about the challenges of communicating the unlimited potential of framing and focus to the actors who work with these directors within these systems. It cannot be argued that the potential of theatrical space has evolved beyond the physical and moved into a more accessible virtual and digitised form, so how then can we direct for this unlimited potential and where do we place the focus of our directed (and captured) performance?