Time to change consumer involvement in nursing research

The experiences of people affected by cancer are at the very heart of nursing research efforts. Because much of our work is focused on understanding how to improve experiences and outcomes for people with cancer, it is easy for us to believe that our research is inherently "person centered" and thus collaborative. Let's reflect on what truly collaborative approaches to cancer nursing research could be like, and how we measure up to such goals. Collaboration between people affected by cancer (consumers) and nurses in research is much more than providing a voice for individuals as participants in a research study. Today, research governing bodies in many countries require us to seek a different kind of consumer participation, where consumers and researchers work in partnership with one another to shape decisions about research priorities, policies, and practices.1 Most granting bodies now require explanations of how consumer and community participation will occur within a study. Ethical imperatives and the concept of patient advocacy also require that we give more considered attention to what is meant by consumer involvement.2 Consumers provide perspective on what will be relevant, acceptable, feasible, and sensitive research, having lived the experience of cancer. As a result, they offer practical insights that can ensure the successful conduct and better outcomes from research. Some granting bodies now even allocate a proportion of final score or assign a "public value" weighting for a grant, to recognize the importance of consumer involvement and reflect the quality of patient involvement in all stages of the research process.3

Using participatory action research for heart self care amongst indigenous patients

This paper describes the initial phases of the Fluid Watchers Pacific Rim project: a participatory action research project that involves developing and trialling an iPad app to provide monitoring and self-care for Indigenous Australians with heart failure. The development phase involved working with health experts, an IT team and Indigenous heart-failure patients through three cycles of development and critical reflection. This was followed by a small pilot study to examine the app’s effectiveness. In this paper, the researchers explain why IT-supported health education can be successful in decreasing re-hospitalisation and improving self-management skills. They describe the steps they took to ensure community participation and ownership of the project and present the findings of their pilot study. This pilot project suggests that an iPad app may be a practical and successful way to provide health-care support for Indigenous Australian heart-failure patients.

Assessing capacity in the context of testamentary, enduring power of attorney, and advance care directive documents in Australia

Balancing the competing interests of autonomy and protection of individuals is an escalating challenge confronting an ageing Australian population. Legal and medical professionals are increasingly being asked to determine whether individuals are legally capable to make their own testamentary, financial and/or personal/health care decisions. Diseases such as dementia impact upon cognition which necessitates collaboration between the legal and medical professions to satisfactorily assess the effect of such mentally disabling conditions upon legal competency. Terminological and methodological differences exist between the two professions when assessing capacity in this context which subsequently create miscommunication and misunderstanding. Consequently, it is not necessarily a simple solution for a legal professional to seek the opinion of a medical practitioner. Exacerbating the situation is the fact that no consistent and transparent capacity assessment paradigm currently exists in Australia. Assessments are instead being undertaken on an ad hoc basis dependent upon the skill set of the legal and/or medical professionals involved. A qualitative study seeking the views of legal and medical professionals who practise in this area has been conducted. This incorporated a review of the relevant literature and surveys which informed the semi-structured interviews conducted with 10 legal and 20 medical practitioners. Practitioners were asked whether there is a standard approach to assessment and whether national guidelines would assist. The general consensus was that uniform guidelines would be advantageous. The research also canvassed practitioner views as to the state of the relationship between the professions when assessing capacity. Three promising practices have emerged from this research: first, is the need for the development of national guidelines and supporting principles to satisfactorily assess capacity; second, is the possibility of strengthening the relationship between legal and medical professionals to assist in the satisfactory assessment of legal capacity; and third, the need for increased community education.

Partisipasi masyarakat dalam pengayaan koleksi elektronik warisan dokumenter

This paper discusses documentary heritage collection enrichment programs run with community participation. Two library programs at the State Library of Queensland (SLQ) are explored as examples. The programs are the Flood and Cyclone Mosaic and Pitch in! The challenges for the implementation of such programs in Indonesia are also discussed in the last section of the paper. This paper provides better understanding of documentary heritage collection enrichment strategies conducted by a public library in Queensland, Australia. It is expected that this paper will inspire public libraries in Indonesia to maximise their documentary collection enrichment strategies with community participation. This paper can also help the National Library of Indonesia (PNRI) in designing their documentary heritage collections enrichment strategies in its role as the Web portal provider of the national documentary heritage repository. Tulisan ini membahas program pengayaan koleksi warisan dokumenter yang dilaksanakan dengan partisipasi masyarakat. Dua program perpustakaan di the State Library of Queensland (SLQ) dieksplorasi sebagai contoh. Program-program yang dibahas adalah Flood and Cyclone Mosaic dan Pitch In! Tantangan yang harus dihadapi untuk penerapan program semacam di Indonesia juga dibahas di bagian akhir tulisan. Tulisan ini memberikan pemahaman mengenai strategi pengayaan koleksi warisan dokumenter yang dilakukan oleh sebuah perpustakaan umum di Queensland, Australia. Diharapkan tulisan ini dapat menjadi inspirasi bagi perpustakaan umum di Indonesia untuk dapat memaksimalkan strategi pengayaan koleksi dokumenter mereka dengan melibatkan partisipasi masyarakat. Tulisan ini juga dapat membantu Perpustakaan Nasional Republik Indonesia (PNRI) dalam merancang strategi pengayaan koleksi warisan dokumenter mereka dalam perannya sebagai penyedia portal Web repositori warisan dokumenter bangsa.

Can social resilience inform SA/SIA for adaptive planning for climate change in vulnerable regions?

This book represents a landmark effort to probe and analyze the theory and empirics of designing water disaster management policies. It consists of seven chapters that examine, in-depth and comprehensively, issues that are central to crafting effective policies for water disaster management. The authors use historical surveys, institutional analysis, econometric investigations, empirical case studies, and conceptual-theoretical discussions to clarify and illuminate the complex policy process. The specific topics studied in this book include a review and analysis of key policy areas and research priority areas associated with water disaster management, community participation in disaster risk reduction, the economics and politics of ‘green’ flood control, probabilistic flood forecasting for flood risk management, polycentric governance and flood risk management, drought management with the aid of dynamic inter-generational preferences, and how social resilience can inform SA/SIA for adaptive planning for climate change in vulnerable areas. A unique feature of this book is its analysis of the causes and consequences of water disasters and efforts to address them successfully through policy-rich, cross-disciplinary and transnational papers. This book is designed to help enrich the sparse discourse on water disaster management policies and galvanize water professionals to craft creative solutions to tackle water disasters efficiently, equitably, and sustainably. This book should also be of considerable use to disaster management professionals, in general, and natural resource policy analysts.

Competitive Smart Cities through Healthy Decision-making

This chapter examines the challenges and opportunities associated with planning for competitive, smart and healthy cities. The chapter is based on the assumptions that a healthy city is an important prerequisite for a competitive city and a fundamental outcome of smart cities. Thus, it is preeminent to understand the planning decision support system based on local determinants of health, economic and social factors. One of the major decision support systems is e-health and this chapter will focus on the role of e-health planning, by utilising web-based geographic decision support systems. The proposed novel decision support system would provide a powerful and effective platform for stakeholders to access online information for a better decision-making while empowering community participation. The chapter also highlights the need for a comprehensive conceptual framework to guide the decision process of planning for healthy cities in association with opportunities and limitations. In summary, this chapter provides the critical insights of using information science-based framework and suggest online decision support methods, as part of a broader e-health approach for creating a healthy, competitive and smart city.

Implications for sustainable land use in high-density cities: Evidence from Hong Kong

Sustainable land use policies are concerned with the kind of world we want to live in now, and in future, and therefore inevitably involve some form of community involvement or consultation process. Hong Kong's sustainable land use planning system is well developed, involving considerable community participation and therefore serves as a good model for similarly situated cities. However, although there are several recent studies involving aspects of its land use planning system, none has yet examined the system as a whole from the perspective of sustainability. To correct this, this paper describes the land use conditions of Hong Kong from both demand and supply perspectives, reviewing its statutory and administrative procedures of land development and allocation together with the sustainable urban renewal practices involved. Problems in current sustainable land use planning and management, such as difficulties in urban renewal, the inherent shortage of land and the lengthy time involved due to need for coordination and responsiveness to multiple stakeholders, and outdated and overcomplicated administrative processes were also analyzed.

Evaluating equal employment opportunity and its impact on the increased participation of men and women in the transport industry

This paper seeks to identify the approaches undertaken in implementing equal employment opportunity in the transport industry in Australia and the links between these approaches and indicators of increased participation of women. This male dominated industry employs limited numbers of women with fewer numbers of women in management. The study analyses data from a unique set of equal opportunity progress reports from all organisations in the transport industry that are required to provide public reports under Australian legislation. The findings indicate a correlation between some approaches to equal opportunity and increased numbers of women in some areas. The study is equally remarkable for what it does not find. Despite widespread equal opportunity implementation across a broad number of employment measures there are limited measures that predict increases in the numbers of women in management or in non-traditional roles. This study differs from others in that it identifies issues specific to one industry and links organisational approach to equal opportunity with the employment status of both women and men.

Empowerment games : empathic design probes for user participation in community housing

This paper documents the empowering process of a group of public housing residents through different design probing exercises. These exercises worked along with existing social processes without any involvement of designers. This paper shows how a design researcher devised a series of probing tools called "empowerment games" with a group of active users. These games are self-learning tools for making the abstract language of design legible to users. The main purpose of this intitiative was to change the preconception of govenmental bodies and professional designers of the passivity of the users with regard to their designed environment. This was the first case of the application of a participatory design process in Hong Kong subsidized housing. Design empathy is a central skill when working with users throughout the whole design research project.

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.

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.

Repeat participation in colorectal cancer screening utilizing fecal occult blood testing : a community-based project in a rural setting

Background and Aim: To investigate participation in a second round of colorectal cancer screening using a fecal occult blood test (FOBT) in an Australian rural community, and to assess the demographic characteristics and individual perspectives associated with repeat screening. ---------- Methods: Potential participants from round 1 (50–74 years of age) were sent an intervention package and asked to return a completed FOBT (n = 3406). Doctors of participants testing positive referred to colonoscopy as appropriate. Following screening, 119 participants completed qualitative telephone interviews. Multivariable logistic regression models evaluated the association between round-2 participation and other variables.---------- Results: Round-2 participation was 34.7%; the strongest predictor was participation in round 1. Repeat participants were more likely to be female; inconsistent screeners were more likely to be younger (aged 50–59 years). The proportion of positive FOBT was 12.7%, that of colonoscopy compliance was 98.6%, and the positive predictive value for cancer or adenoma of advanced pathology was 23.9%. Reasons for participation included testing as a precautionary measure or having family history/friends with colorectal cancer; reasons for non-participation included apathy or doctors’ advice against screening.---------- Conclusion: Participation was relatively low and consistent across rounds. Unless suitable strategies are identified to overcome behavioral trends and/or to screen out ineligible participants, little change in overall participation rates can be expected across rounds.

Classifying Socially-Valued Role Functioning Among Community Residents with Psychiatric Disorders

An increased emphasis on community-based care has not ensured that people recovering from psychiatric disorders return to active and valued roles in their local communities. Although clinical recovery remains a priority for mental health services there is increasing recognition of the need for functional recovery to be attained and demonstrated in roles valued by the wider community. With this need in mind, a method for classifying socially-valued role functioning among people with schizophrenia or schizoaffective disorder was developed and trialed. Participants (n = 104) were recruited via mental health, psychosocial rehabilitation, and other community support services. Socially-valued roles were investigated via participation in five categories: (1) self-care and home duties; (2) caring for others; (3) self-development, voluntary work or rehabilitation; (4) formal education or training; and (5) employment. Activities were classified by primary role type and role status level at baseline, six, and 12 months. Current role status was assessed along with highest and lowest status in the previous year. Preliminary psychometric results were favorable. Research applications are now recommended for monitoring socially-valued role functioning in community settings.

Transferring knowledge through peer-reviewed assessment : the creation of a community of practice and the threats to its survival

While it is generally accepted in the learning and teaching literature that assessment is the single biggest influence on how students approach their learning, assessment methods within higher education are generally conservative and inflexible. Constrained by policy and accreditation requirements and the need for the explicit articulation of assessment standards for public accountability purposes, assessment tasks can fail to engage students or reflect the tasks students will face in the world of practice. Innovative assessment design can simultaneously deliver program objectives and active learning through a knowledge transfer process which increases student participation. This social constructivist view highlights that acquiring an understanding of assessment processes, criteria and standards needs active student participation. Within this context, a peer-assessed, weekly, assessment task was introduced in the first “serious” accounting subject offered as part of an undergraduate degree. The positive outcomes of this assessment innovation was that student failure rates declined 15%, tutorial participation increased fourfold, tutorial engagement increased six-fold and there was a 100% approval rating for the retention of the assessment task. In contributing to the core conference theme of “seismic” shifts within higher education, in stark contrast to the positive student response, staff-related issues of assessment conservatism and the necessity of meeting increasing research commitments, threatened the assessment task’s survival. These opposing forces to change have the potential to weaken the ability of higher education assessment arrangements to adequately serve either a new generation of students or the sector's community stakeholders.

Transferring knowledge through peer-reviewed assessment : the creation of a community of practice and the threats to its survival

While it is generally accepted in the learning and teaching literature that assessment is the single biggest influence on how students approach their learning, assessment methods within higher education are generally conservative and inflexible. Constrained by policy and accreditation requirements and the need for the explicit articulation of assessment standards for public accountability purposes, assessment tasks can fail to engage students or reflect the tasks students will face in the world of practice. Innovative assessment design can simultaneously deliver program objectives and active learning through a knowledge transfer process which increases student participation. This social constructivist view highlights that acquiring an understanding of assessment processes, criteria and standards needs active student participation. Within this context, a peer-assessed, weekly, assessment task was introduced in the first “serious” accounting subject offered as part of an undergraduate degree. The positive outcomes of this assessment innovation was that student failure rates declined 15%, tutorial participation increased fourfold, tutorial engagement increased six-fold and there was a 100% approval rating for the retention of the assessment task. In contributing to the core conference theme of “seismic” shifts within higher education, in stark contrast to the positive student response, staff-related issues of assessment conservatism and the necessity of meeting increasing research commitments, threatened the assessment task’s survival. These opposing forces to change have the potential to weaken the ability of higher education assessment arrangements to adequately serve either a new generation of students or the sector's community stakeholders.