What factors influence people's decisions to register for organ donation? The results of a nominal group study.

Rates of transplantation from deceased donors remain low, despite high rates of expressed support. We aimed to better understand this mismatch through determining community attitudes regarding willingness to register as organ donors. Participants were recruited from the general public in four Australian states. Using nominal group techniques, participants ranked factors they believed were important when deciding to register as a deceased donor. Thirteen nominal groups with 114 participants were conducted. 24 factors were ranked by three or more groups. The top ten factors were as follows: saving lives, own decision to donate, family opinions, benefit to recipients, process of organ donation, positive media, positive closure, clarity of consent and body dignity. Other factors included: the consent system, religious and cultural beliefs and incentives for donation. Participant age was a potential modifier of responses. Willingness to register as an organ donor is highly influenced by the altruistic motive of saving lives and improving lives for others; this should be harnessed in communication campaigns. Further research on ethical incentives for organ donation and continued efforts to promote support from religious groups may be useful. Many believe the sole right to consent to donation is theirs and not their families; consent policies reflecting this should be explored.

Community preferences for the allocation of deceased donor organs for transplantation: a focus group study.

BACKGROUND: Solid organ transplantation is the treatment of choice for those with organ failure, but suitable organs are a limited community resource. Little is known about community preferences for the allocation of those organs. We aimed to determine community preferences for organ allocation and reasons for their choices. METHODS: Participants were recruited from the community in four states in Australia. In focus groups, they identified and discussed attributes that they believed were important for allocating organs to potential recipients. Transcripts were analysed thematically. RESULTS: Thirteen focus groups with 114 participants were conducted. Four major themes emerged: (i) saving and improving the lives; (ii) lowering the risk of lost opportunities; (iii) fairness and (iv) accountability. While happy to discuss general principles, many were not comfortable making organ allocation decisions and were happy to defer to health professionals; this reticence tended to disappear when discussing the use of their own organs. CONCLUSIONS: Participants wanted to save as many lives as possible as well as lower the risk of lost opportunities for those on the waiting list by maximizing the chances of success of every donation. A rational utilitarian ethical model of organ allocation, therefore, appeared to be the dominant framework adopted by the community. Key considerations were compatibility, high chance of peri-operative survival and favouring those with positive lifestyle and self-management choices. Communication between the transplant community and general community about organ allocation could be undertaken to create trust and shared understanding, which may ultimately increase organ donation rates in the future.

Developing a systems thinking guide for enhancing knowledge mobilisation in prevention research.

Knowledge mobilisation aims to increase research impact in policy and practice. 'Mobilising' knowledge implies a social interaction and involves an iterative, collaborative process. We argue that this process is strengthened when underpinned by systems thinking. Previous research has integrated systems thinking with knowledge mobilisation. We built on this to develop an applied tool to support prevention researchers seeking to incorporate systems thinking into their knowledge mobilisation work. We refer to this tool as the 'systems thinking guide for knowledge mobilisation'. Our guide was developed through a stepwise process that included: 1) An inductive thematic synthesis of previous research in this area; 2) Reflexive deliberation to identify critical focus areas, drawing on the synthesis and the authors' experiences of applying systems approaches to knowledge mobilisation; 3) Development of a set of questions designed for end users to consider against the backdrop of their own research and contexts; 4) Trialling these questions through a series of workshops; and 5) Revision based on user feedback. The proposed systems thinking guide includes 13 questions and 18 subquestions to help researchers frame their knowledge mobilisation strategies using a systems perspective. Our next steps are applying this guide to other research projects and reviewing and reporting on its implementation and real-world use. In the meantime, we invite other research teams to test this tool and contribute constructive feedback on its usefulness and potential further development.

Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature.

BACKGROUND: Transplantation is the treatment of choice for organ failure, but a worldwide shortage of suitable organs exists. We conducted a systematic review of qualitative studies that explored community attitudes towards living and deceased solid organ donation to inform strategies to improve organ donation rates. METHODS: Medline, Embase, PsycINFO and EconLIT were searched. Qualitative studies that explored community attitudes towards living and deceased solid organ donation were included. A thematic synthesis of the results and conclusions reported by primary authors was performed. RESULTS: Eighteen studies involving 1019 participants were identified. Eight themes emerged. The decision to be an organ donor was influenced by (i) relational ties; (ii) religious beliefs; (iii) cultural influences; (iv) family influences; (v) body integrity; (vi) previous interactions with the health care system-medical mistrust, validity of brain death and fear of early organ retrieval; (vii) the individual's knowledge about the organ donation process and (viii) major reservations about the process of donation, even in those who support organ donation. CONCLUSIONS: This review of qualitative studies highlights that seemingly intractable factors, such as religion and culture, are often tied in with more complex issues such as a distrust of the medical system, misunderstandings about religious stances and ignorance about the donation process. Intervention that could be considered includes culturally appropriate strategies to engage minority groups, especially through religious or cultural leaders, and more comprehensively available information about the donation process and its positive outcomes.

Socio-demographic and familial factors associated with hospital admissions and repeat admission for dental caries in early childhood: A population-based study.

OBJECTIVES: Dental caries remains a complex childhood condition often requiring preventable hospital admissions. There are limited population-based epidemiological studies that use large and linked data sets to quantify the clinical, socio-demographic and familial risk factors related to hospital admissions for dental caries. The aim of this study was to describe and quantify the rates, socio-demographic, clinical characteristics and familial factors including repeat admissions associated with young children admitted to hospital for dental caries. METHODS: This cohort study (n = 33,438) used longitudinally linked hospital admission data among all children aged

Leadership for systems change: Researcher practices for enhancing research impact in the prevention of chronic disease.

Introduction: Strengthening systems for chronic disease prevention is essential. Leadership for systems change is an important key to strengthening systems. Leadership in prevention research for supporting systems change remains a relatively abstract concept and there is limited empirical information about the leadership practices of prevention research teams when viewed through a complexity lens. In this paper we examine and describe some systems leadership practices for creating change through prevention research, as identified in a series of six case studies. Methods: A qualitative approach incorporating semi-structured interviews, participant observation, and document review was used to facilitate an in-depth investigation of the research topic. Results: Several researcher practices for enhancing research impact in the prevention of chronic disease were distilled from the data pertaining to how they sought to create change. These included persuasive communication, compassion and deep listening, reflective practice, and embedding themselves within the systems they sought to change. Discussion: The findings provide insights that may assist prevention researchers and other practitioners dedicated to creating change in chronic disease prevention.

Nephrologists' perspectives on the effect of guidelines on clinical practice: a semistructured interview study.

BACKGROUND: A consistent gap exists between evidence-based guideline recommendations and clinical practice across all medical disciplines, including nephrology. This study aims to explore nephrologists' perspectives on guidelines and elicit their perspectives on the effects of guidelines on clinical decisions. METHODS: Semistructured face-to-face interviews were undertaken with 19 nephrologists from a variety of clinical settings across Australia. Participants were asked about their views of clinical practice guidelines in nephrology, both local (Caring for Australasians With Renal Impairment [CARI]) and international, and their opinions of other factors that shape their decision making. Interviews were recorded, transcribed, and analyzed qualitatively. RESULTS: 4 major themes were identified. First, overall, the nephrologists interviewed trusted the CARI guideline process and output. Second, guidelines served a variety of purposes, providing a good summary of evidence, a foundation for practice, an educational resource, and justification for funding requests to policy makers, as well as promoting patient adherence to treatment. Third, guidelines were only one input into decision making. Other inputs included individual patient quality of life and circumstances, opinion leaders, peers, nephrologists' own experiences, the regulation and subsidy framework for drugs and devices, policies and work practices of the local unit, and other sources of evidence. Fourth, guideline uptake varied. Factors that favored the use of guidelines included having a strong evidence base, being current, including specific targets and an explicit treatment algorithm, being sent frequent reminders, and having local peer support for implementation and the necessary personnel and other resources for effective implementation. CONCLUSIONS: Evidence-based guidelines appear to impact strongly on clinical decision making of Australian nephrologists, but are only one input. Improvements in the evidence that underpins guidelines and improvements in the content and formatting of guidelines are likely to make them more influential on decision making. Trust in the guideline groups' processes is a prerequisite for implementation.

Opinions on the content and effects of the Caring for Australasians with Renal Impairment (CARI) Guidelines: a survey of renal nurses and comparison with the opinions of nephrologists in Australasia.

AIM: Renal nurses in Australia and New Zealand are critical to the care of patients with chronic kidney disease (CKD), especially those on dialysis. We aimed to obtain the opinions of renal nurses in Australia and New Zealand on the Caring for Australasians with Renal Impairment (CARI) Guidelines. METHODS: A self-administered survey was distributed to all members of the professional organisation for renal nurses (Renal Society of Australasia) in 2006. The results were compared with those from a similar survey in 2002 and an identical 2006 survey of Australian and New Zealand nephrologists. RESULTS: Of the 173 respondents, more than 95% considered the Guidelines to be a good synthesis of the available evidence, 80% indicated that the Guidelines had significantly influenced their practice and 86% considered that the Guidelines had improved patient outcomes. Older respondents were less likely to perceive that the Guidelines had improved patient outcomes, and renal nurse educators were more likely to consider that the Guidelines were based on the best available evidence than other respondents. Respondents were generally more positive about the Guidelines in 2006 than in 2002. Although nephrologists were generally positive about the CARI Guidelines, renal nurses were more positive, especially regarding the effect of the Guidelines on practice and the improvement in health outcomes. CONCLUSION: Australian and New Zealand renal nurses valued the CARI Guidelines highly, used them in practice and considered that they led to improved patient outcomes. Positive responses towards the Guidelines increased between 2002 and 2006.

Opinions on the content and effects of clinical practice guidelines for CKD: a survey of nephrologists in Australia and New Zealand.

Evidence-based clinical practice guidelines have been a major development in nephrology internationally, but it is uncertain how the nephrology community regards these guidelines. This study aimed to determine the views of nephrologists on the content and effects of their local guidelines (Caring for Australasians with Renal Impairment [CARI]). In 2006, a self-administered survey was distributed to all Australian and New Zealand nephrologists. Seven questions were repeated from a similar survey in 2002. A total of 211 nephrologists (70% of practicing nephrologists) responded. More than 90% agreed that the CARI guidelines were a useful summary of evidence, and nearly 60% reported that the guidelines had significantly influenced their practice. The proportion of nephrologists reporting that the guidelines had improved patient outcomes increased from 14% in 2002 to 38% in 2006. The proportion of nephrologists indicating that the guidelines did not match the best available evidence decreased from 30% in 2002 to 8% in 2006. Older age and male sex showed some associations with a less favorable response for some domains. The CARI approach of rigorous evidence-based guidelines has been shown to be a successful model of guideline production. Almost all nephrologists regarded the CARI guidelines as useful evidence summaries, although only one-third believed that the guidelines affected health outcomes. Attitudes to the guidelines have become more favorable over time; this may reflect changes in the CARI process or attitudinal changes to evidence among nephrologists. Evaluation by the end user is fundamental to ensuring the applicability of guidelines in clinical practice in the future.

Teaching Cultural Competence in Dental Education: A Systematic Review and Exploration of Implications for Indigenous Populations in Australia.

Indigenous and other minority populations worldwide experience higher rates of disease including poor oral health than other populations. Cultural competence of practitioners is increasingly being recognized as fundamental to health care and quality of life in addressing these disparities. The aims of this study were to conduct a systematic review of the literature about teaching cultural competence in dental education and to explore the particular relevance of that teaching for the oral health care of Indigenous populations in Australia. A systematic review employing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement was conducted of published studies that explored cultural competency interventions in dental curricula. A total of 258 studies from 2004 to 2015 were identified; after removing duplications and applying criteria for exclusion, 12 were selected for analysis, involving 1,360 participants. The principal themes identified in the qualitative analysis of these studies were curriculum content, curriculum delivery, community service-learning, reflective writing, and evaluation. Students need knowledge of health disparities and community health to better understand the perspectives of culturally diverse populations and to communicate effectively with people from various cultures. The principal strategies that improved cultural competence in the articles examined in this study were educational seminars, community service-learning, and reflective writing. These findings suggest that integration of cultural competency curricula using a combination of didactic or online training, community engagement, and reflective writing may increase the cultural knowledge and skills of dental students.

Developing a Sustainable Model of Oral Health Care for Disadvantaged Aboriginal People Living in Rural and Remote Communities in NSW, Using Collective Impact Methodology.

A sustainable model of oral health care for disadvantaged Aboriginal people living in rural and remote communities in New South Wales was developed using collective impact methodology. Collective impact is a structured process which draws together organizations to develop a shared agenda and design solutions which are jointly resourced, measured and reported upon.

Developing a Sustainable Model of Oral Health Care for Disadvantaged Aboriginal People Living in Rural and Remote Communities in NSW, Using Collective Impact Methodology.

A sustainable model of oral health care for disadvantaged Aboriginal people living in rural and remote communities in New South Wales was developed using collective impact methodology. Collective impact is a structured process which draws together organizations to develop a shared agenda and design solutions which are jointly resourced, measured and reported upon.

Community attitudes to deceased organ donation: a focus group study.

BACKGROUND: Despite broad community support for organ donation, there is a chronic shortage of donor organs for transplantation. This study elicited community attitudes on deceased organ donation and the current Australian organ donation system. METHODS: Thirteen focus groups with 114 participants aged between 18 and 75 years. Qualitative analysis using a grounded theory approach was used. RESULTS: Participants were generally positive toward deceased organ donation, but this did not always translate to decisions to be a donor. Three main categories of themes emerged. (1) Participants held core beliefs that both encouraged donation, such as "giving is good" and "saving lives," and discouraged donation, such as loss of body dignity, need for body wholeness, and differing medical care for donors. (2) A range of factors could influence how core beliefs were weighted in the decision-making process, including family, knowledge, information, media, grief, apathy, and fear. (3) Participants discussed the need for a simpler consent system where family members could not overrule their donation decision, greater public awareness for organ donation, and the availability of more information on the organ donation process. CONCLUSIONS: Opportunities exist to improve deceased organ donation rates by education to improve confidence in the donation process, positive media coverage, and clear information on each religion's stance on organ donation. Options for greater public recognition for organ donors should be explored. Finally, our findings suggest that aspects of the current donation consent system are not aligned with community values, and reforms should be debated publicly.

Implementing iron management clinical practice guidelines in patients with chronic kidney disease having dialysis.

OBJECTIVE: To evaluate the outcomes of and barriers to implementing standard guidelines (Caring for Australasians with renal impairment [CARI]), using iron management in patients having dialysis as an example. DESIGN AND SETTING: On-site review of iron management processes at six Australian dialysis units varying in size and locality. Patients' iron indices and haemoglobin levels were obtained from the Australian and New Zealand Dialysis and Transplant Registry. PARTICIPANTS: Patients with chronic kidney disease who were dependent on dialysis. MAIN OUTCOME MEASURES: Processes for assessing indices of iron stores and iron supplementation; comparison with target indices in the CARI guidelines. RESULTS: There was considerable variability among the units in achievement of haemoglobin and iron targets, with 25%-32% of patients achieving haemoglobin targets of 110-120 g/L, 30%-68% achieving ferritin targets of 300-800 microg/L, and 65%-73% achieving transferrin saturation targets of 20%-50%. Implementation barriers included lack of knowledge, lack of awareness of or trust in the CARI guideline, inability to implement the guideline, and inability to agree on a uniform unit protocol. Factors associated with achieving the CARI guideline targets included nurse-driven iron management protocols, use of an iron management decision aid, fewer nephrologists per dialysis unit, and a "proactive" (actively keeping iron levels within target range) rather than "reactive" (only reacting if iron levels are out of the range) protocol. CONCLUSIONS: Variability in achievement of iron targets, despite the availability of a clinical practice guideline, may be explained by variability in processes of care for achieving and maintaining adequate iron parameters.