Peter Nugus

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Background Patients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS. Methods An exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes. Results Decision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs. Conclusion Decision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

An action research protocol to strengthen system-wide inter-professional learning and practice [LP0775514]

BackgroundInter-professional learning (IPL) and inter-professional practice (IPP) are thought to be critical determinants of effective care, improved quality and safety and enhanced provider morale, yet few empirical studies have demonstrated this. Whole-of-system research is even less prevalent. We aim to provide a four year, multi-method, multi-collaborator action research program of IPL and IPP in defined, bounded health and education systems located in the Australian Capital Territory (ACT). The project is funded by the Australian Research Council under its industry Linkage Program.Methods/DesignThe program of research will examine in four inter-related, prospective studies, progress with IPL and IPP across tertiary education providers, professional education, regulatory and registration bodies, the ACT health systems streams of care activities and teams, units and wards of the provider facilities of the ACT health system. One key focus will be on push-pull mechanisms, ie, how the education sector creates student-enabled IPP and the health sector demands IPL-oriented practitioners. The studies will examine four research aims and meet 20 research project objectives in a comprehensive evaluation of ongoing progress with IPL and IPP.DiscussionIPP and IPL are said to be cornerstones of health system reforms. We will measure progress across an entire health system and the clinical and professional education systems that feed into it. The value of multi-methods, partnership research and a bi-directional push-pull model of IPL and IPP will be tested. Widespread dissemination of results to practitioners, policymakers, managers and researchers will be a key project goal.

A four-year, systems-wide intervention promoting interprofessional collaboration

BackgroundA four-year action research study was conducted across the Australian Capital Territory health system to strengthen interprofessional collaboration (IPC) though multiple intervention activities.MethodsWe developed 272 substantial IPC intervention activities involving 2,407 face-to-face encounters with health system personnel. Staff attitudes toward IPC were surveyed yearly using Heinemann et als Attitudes toward Health Care Teams and Parsell and Blighs Readiness for Interprofessional Learning scales (RIPLS). At studys end staff assessed whether project goals were achieved.ResultsOf the improvement projects, 76 exhibited progress, and 57 made considerable gains in IPC. Educational workshops and feedback sessions were well received and stimulated interprofessional activities. Over time staff scores on Heinemanns Quality of Interprofessional Care subscale did not change significantly and scores on the Doctor Centrality subscale increased, contrary to predictions. Scores on the RIPLS subscales of Teamwork & Collaboration and Professional Identity did not alter. On average for the assessment items 33% of staff agreed that goals had been achieved, 10% disagreed, and 57% checked neutral. There was most agreement that the study had resulted in increased sharing of knowledge between professions and improved quality of patient care, and least agreement that between-professional rivalries had lessened and communication and trust between professions improved.ConclusionsOur longitudinal interventional study of IPC involving multiple activities supporting increased IPC achieved many project-specific goals. However, improvements in attitudes over time were not demonstrated and neutral assessments predominated, highlighting the difficulties faced by studies targeting change at the systems level and over extended periods.

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals.

Background The aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making. Methods Thirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically. Results Respondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information. Conclusion Patient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.

Expanding clinical research capacity through a community of practice (CoPER)

PURPOSE The proposed CoPER project (Community of Practice for Engaging in Research) responds to a need for increased research capacity in a clinical setting. We put forward an argument and a design for a prospective action research project to extend research capacity via an integrated academic and practitioner community of practice in an Emergency Department (ED). PROCEDURES This paper explores the research needs of clinicians, articulates the concept of community of practice in light of these needs, and outlines the rationale for considering communities of practice as a potential contributor to building research capacity in a clinical setting. FINDINGS A potential methodology is suggested to test the linkage between research needs, the concept of a community of practice model in a clinical setting, and the contribution of such a model to building research capacity in a clinical setting via the CoPER framework. CONCLUSIONS Combined data from this proposed mixed method action research (survey, focus groups, interviews, observation) are expected to enable the production of a set of facilitators and enablers with a view to building a community of research practice which make the case study transferable to other clinical and non-clinical work settings.

Visualising differences in professionals' perspectives on quality and safety

Background The safety-and-quality movement is now two decades old. Errors persist despite best efforts, indicating that there are entrenched overt and perhaps less explicit barriers limiting the success of improvement efforts. Objectives and hypotheses To examine the perspectives of five groups of healthcare workers (administrative staff, nurses, medical practitioners, allied health and managers) and to compare and contrast their descriptions of quality-and-safety activities within their organisation. Differences in perspectives can be an indicator of divergence in the conceptualisation of, and impetus for, quality-improvement strategies which are intended to engage healthcare professions and staff. Design, setting and participants Study data were collected in a defined geographical healthcare jurisdiction in Australia, via individual and group interviews held across four service streams (aged care and rehabilitation; mental health; community health; and cancer services). Data were collected in 2008 and analysed, using data-mining software, in 2009. Results Clear differences in the perspectives of professional groups were evident, suggesting variations in the perceptions of, and priorities for, quality and safety. Conclusions The visual representation of quality and safety perspectives provides insights into the conceptual maps currently utilised by healthcare workers. Understanding the similarity and differences in these maps may enable more effective targeting of interprofessional improvement strategies.

The influence of professional values on the implementation of Aboriginal health policy

Objective: This article explores the role of professional values and the culture of the Australian health care system in facilitating and constraining the implementation of an Aboriginal health policy. Methods: Thirty-five semi-structured in-depth interviews were conducted in a case study on the implementation of the Northern Territory Preventable Chronic Disease Strategy (PCDS). Results: PCDS included three major evidence-based components - primary prevention, early detection and better management. The research revealed that PCDS changed as it was implemented. The values of the medical and nursing professions favoured the implementation of the clinically-based component of PCDS - better management. But there was dissonance between the values of these dominant professional groups and the values and expertise in public health that were necessary to implement fully the primary prevention component of PCDS. While Aboriginal health workers have valuable knowledge and skills in this area, they were not accorded sufficient power and training to influence decision-making on priorities and resources, and were able to exercise only limited influence on the components of the PCDS that were implemented. Conclusion: The findings highlight the role that a myriad of values play in influencing which aspects of a policy are implemented by organizations and their agents. Comprehensive and equitable implementation of policy requires an investigation and awareness of different professional values, and an examination of whose voices will be privileged in the decision-making process. If the advances in developing evidence-based, culturally-appropriate and inclusive policy are to be translated into practice, then care needs to be taken to monitor and influence whose values are being included at what point in the policy implementation process.

Achieving patient‐centred care: the potential and challenge of the patient‐as‐professional role

The patient‐as‐professional concept acknowledges the expert participation of patients in interprofessional teams, including their contributions to managing and coordinating their care. However, little is known about experiences and perspectives of these teams.

Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Clinical Governance: Complexities and Promises

This chapter considers the scope of clinical governance by tracing its origins to the National Health Service in the United Kingdom, and by outlining its heterogeneous impacts on health sector employment relations in Australia. The concept of clinical governance originated in the United Kingdom (UK) in 1997 in The New NHS report, which describes it as an instrument that aims ‘to assure and improve clinical standards at the local level’ (Gray, 2004; UK Department of Health, 1997). Its formal definition is often derived from a later article: … a framework through which NHS organizations are accountable for continually improving the quality of their services and safeguarding high standards of care by creating an environment in which excellence in clinical care will flourish (Donaldson and Gray, 1998, p. S38)