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AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONThis study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported.The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52–73 years; disease duration 6–99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual’s experience of decision-making about PEG. The data were synthesised and analysed thematically.Three main themes and two sub-themes captured participant views on their decision-making. The first, “What matters most to me,” comprised optimising quality of life and maintaining family membership. The second theme explored “Understanding PEG and the clinical pathway.” The third theme was “Thoughts on using a decision aid.”This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG. [ABSTRACT FROM AUTHOR]

Background: Health service administrators are continually investigating new ways to improve the safety and quality of health services. A positive and powerful relationship between employee engagement and patient safety has been suggested in the research literature, and steps can be taken by employers to enhance engagement to improve the safety of health services, particularly considering the COVID-19 pandemic.Methods: A review of peer-reviewed literature relating to the impact of employee engagement on patient safety within health services between January 2015 and May 2021 was conducted using CINAHL, Medline Complete, Scopus, Health Business Elite and Business Source Ultimate databases. A search of grey literature using the BASE database was also completed.Results: 3,693 relevant articles were identified, of which 15 studies were included in this review. Ten articles measured employee engagement using existing, validated tools, whereas patient safety was most frequently assessed through surveys seeking staff member's perceptions of safety or the quality of care they provide. Overall, there appeared to be a positive correlation between employee engagement and patient safety, but the strength of the relationship varied.Conclusion: Anecdotal accounts of improving employee engagement and improving patient safety abound, and the evidence reviewed appears in agreement. However, research into the impact of employee engagement on patient safety is in its early stages. As health service managers consider the best use of funding to support safe and high-quality care, evidence to support the positive impact employee engagement has on patient safety may be useful in managing the fallout from the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Rationale, aims, and objectives: Ward rounds present opportunities for medical officers, nurses, allied health clinicians, and patients to interact and plan patient care. A recent literature review found eight types of rounding processes. Different purposes, varying levels of representation from clinical professions, and understanding of each others' roles revealed a complex activity. A shared understanding of rounding processes facilitates positive teamwork and improves patient care. We examined how clinicians perceive the nature of rounding processes they undertake within their practice, multidisciplinary team attendance at rounds, and the effectiveness of team communication. Methods: We surveyed frontline professionals in two acute care and two rehabilitation wards from a metropolitan teaching hospital. There were 77 participants representing medical officers, nurses, and allied health clinicians. Participants selected the type of rounding processes undertaken on their ward from a list of six defined types, then answered questions about who participated in the rounds and their perceptions of the effectiveness of multidisciplinary communication. Survey findings were analysed using descriptive statistics and comparison. Results: Overall, professionals were inconsistent in the identification of number and types of rounds. Participants nominated processes more consistently within individual clinical disciplines than by clinical speciality. Medical officers identified rounds most consistently, while some nurses were unable to identify any rounding processes undertaken. The perceptions clinicians had of their own attendance at rounds differed from that of their colleagues. Despite variation in perceptions about rounds, professionals reported effective multidisciplinary communication patterns overall. Conclusion: Rounds are a common yet complex activity. Rounds are revealed to be a taken‐for‐granted organizational activity with diversity in function, attendance, and participation, yet rounding processes are perceived and experienced differently between health professions. These differences impact on multidisciplinary attendance at rounds amongst peers. Making and communicating explicit round expectations and roles for clinicians supports coordinated teamwork and care planning. [ABSTRACT FROM AUTHOR]

Objectives: Men diagnosed with low‐risk prostate cancer are typically eligible for active surveillance of their cancer, involving monitoring for cancer progression and making judgements about the risks of prostate cancer against those of active intervention. Our study examined how risk for prostate cancer is perceived and experienced by patients undergoing active surveillance with their clinicians, how risk is communicated in clinical consultations, and the implications for treatment and care. Method: Participants were nine patients and three clinicians from a university hospital urology clinic. A staged, qualitative, multi‐method data collection approach was undertaken, comprising: observations of consultations; patient and clinician interviews; and patient surveys. The three data sets were analysed separately using thematic analysis and then integrated to give a comprehensive view of patient and clinician views. Results: Thirty data points (eight patient surveys; 10 observations of consultations between patients and clinicians; 10 patient interviews; and two clinician interviews) combined to create a detailed picture of how patients perceived and appraised risk, in three themes of "Making sense of risk", "Talking about risk" and "Responding to risk". Conclusion: Effective risk communication needs to be finely tuned and timed to individual patient's priorities and information requirements. A structured information exchange process that identifies patients' priorities, and details key moments in risk assessment, so that complexities of risk are discussed in ways that are meaningful to patients, may benefit patient care. These findings could inform the development of patient‐centric risk assessment procedures and service delivery models in prostate cancer care more broadly. [ABSTRACT FROM AUTHOR]

Background: The ward round is an opportunity to plan and deliver patient-centered care. Benefits include an effective and safer clinician-patient relationship, patient empowerment, reduced anxiety and increased trust in the health care system. Factors contributing to patient involvement in ward rounds is shaped by their preferences, ability, and opportunity. Aim: To investigate ward rounds and the patient experience with them, the relationship between the patient and clinicians, and how rounds facilitate collaboration between them. Patients and methods: A multimethod study was conducted in a single Australian facility in acute medicine and rehabilitation specialties. An observational study of ward rounds in each setting was conducted with 14 patients, aged between 55 and 89 years followed by semi-structured interviews conducted with the patients observed. Descriptive and thematic analysis was undertaken. Results: One third of participants had not heard of the term ward round or could describe their purpose. Three main influencers on the patient experience of rounds were: self; the health system; and medical officers. No meaningful difference was found between patients in acute medicine and rehabilitation although all wanted to receive information from the senior medical officers. Patients more familiar with the health system were more active participants and took greater responsibility for their involvement in rounds and described higher satisfaction. Conclusion: There is a level of acceptance within the health system that patients understand what a ward round is. However, their role on the round is complex and this may only be developed through experiencing them. High system users teach themselves to navigate rounding processes to ensure their needs are met. To ensure equity in participation patients should be educated on ward rounds, what to expect and how to they can participate. [ABSTRACT FROM AUTHOR]

2017; The 28th International Symposium on ALS/MND. 32 Costello J. (2012) Preserving legacy: A guide to Message Banking a patient's voice. A phase 1 study to evaluate bioequivalence between BHV-0223 40 mg zydis sublingual formulation and riluzole 50mg oral tablet in healthy volunteers. A phase 1 study to evaluate bioequivalence between BHV-0223 40 mg zydis sublingual formulation and riluzole 50mg oral tablet in healthy volunteers. https://www.biohavenpharma.com/sites/default/files/documents/bvh-0223-bioequivalence-aanem-2018.pdf. [Extracted from the article]

Rationale, aims and objective Accrediting health care organizations against standards is a recognized safety and quality intervention. The credibility of an accreditation programme relies on surveying reliability. We investigated accreditation survey coordinators' perceptions of reliability issues and their continued relevancy, during a period of national accreditation reform. Method In 2013 and 2014, questionnaire surveys were developed using survey coordinators' feedback of their experiences and concerns regarding the accreditation process. Each year, a purpose-designed questionnaire survey was administered during the accrediting agency survey coordinator training days. Results Participants reported that survey reliability was informed by five categories of issues: the management of the accreditation process, including standards and health care organizational issues; surveyor workforce management; survey coordinator role; survey team; and individual surveyors. A new accreditation system and programme did not alter the factors reported to shape survey reliability. However, across the reform period, there was a noted change within each category of the specific issues that were of concern. Furthermore, consensus between coordinators that existed in 2013 appears to have diminished in 2014. Across all categories, in 2014 there was greater diversity of opinion than in 2013. Conclusions The known challenges to the reliability of an accreditation programme retained their potency and relevancy during a period of reform. The diversity of opinion identified across the coordinator workforce could potentially place the credibility and reliability of the new scheme at risk. The study highlights that reliability of an accreditation scheme is an ongoing achievement, not a one-off attainment. [ABSTRACT FROM AUTHOR]

Background: 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. Objective: The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care? Setting and participants: Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically. Results: Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’. Discussion: Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients' cyclic decision‐making patterns and facilitating carer inclusion in decision processes. Conclusions: The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment. [ABSTRACT FROM AUTHOR]

Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care. Participants and methods: An exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes. Results: Carers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients' decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients' independence and patients' best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care. Conclusion: Carers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge. [ABSTRACT FROM AUTHOR]

Purpose: Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care. Participants and methods: An exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes. Results: Carers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients' decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients' independence and patients' best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care. Conclusion: Carers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care. [ABSTRACT FROM AUTHOR]

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care. [ABSTRACT FROM AUTHOR]

Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered. [ABSTRACT FROM AUTHOR]

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women’s understandings of risk as they “journeyed” through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited (N = 25) from a large UK Health Board, 2014–2015, completing a “Book of Experience,” and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: “Subjective Understandings of Risk” and “Journeying Toward an Unknown Future.” Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients’ foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future. [ABSTRACT FROM AUTHOR]

Objective: To examine how consumer engagement (CE) can be promoted through Australian accreditation programmes.Design: A nation-wide qualitative study completed in 2012.Setting: All eight Australian States and Territories.Participants: Two-hundred and fifty-eight healthcare stakeholders from the acute, primary and aged care sectors.Intervention: Forty-seven individual and group interviews were undertaken. Questions elicited views on the dimensions and utility of CE promotion by accreditation programmes.Main Outcome Measure: Healthcare stakeholders' views on the dimensions and utility of CE promotion by accreditation programmes.Results: Four mechanisms of CE promotion were identified. Two involved requirements for health service organizations to meet CE-related standards related to consumer experience and satisfaction surveys, and consumer participation in organizational governance processes. Two mechanisms for promoting CE through accreditation processes were also identified, concerning consumer participation in the development and revision of standards, and the implementation of accreditation surveys. Accreditation programmes were viewed as important drivers of CE, yet concerns were raised regarding the organizational investments needed to meet programmes' requirements.Conclusions: Accreditation programmes use diverse mechanisms as levers for change to promote CE in healthcare. These mechanisms and their inter-relationships require careful consideration by accreditation agencies and health policymakers to maximize their potential benefits, while maintaining stakeholder engagement in programmes. [ABSTRACT FROM AUTHOR]

An innovative approach to patient management, evidence-based policy development, and clinical drug trials is required to provide personalized care and to improve the likelihood of finding an effective treatment for Motor Neurone Disease (MND). The MiNDAus Partnership builds on and extends existing national collaborations in a targeted approach to improve the standard and coordination of care for people living with MND in Australia, and to enhance the prospects of discovering a cure or treatment. Relationships have been developed between leading clinical and research groups as well as patient-centered organizations, care providers, and philanthropy with a shared vision. MiNDAus has established a corporate structure and meets at least biannually to decide on how best to progress research, drug development, and patient management. The key themes are; (i) empowering patients and their family carers to engage in self-management and ensure personalized service provision, treatment, and policy development, (ii) integration of data collection so as to better inform policy development, (iii) unifying patients and carers with advocacy groups, funding bodies, clinicians and academic institutions so as to inform policy development and research, (iv) coordination of research efforts and development of standardized national infrastructure for conducting innovative clinical MND trials that can be harmonized within Australia and with international trials consortia. Such a collaborative approach is required across stakeholders in order to develop innovative management guidelines, underpinned by necessary and evidence-based policy change recommendations, which, will ensure the best patient care until a cure is discovered. [ABSTRACT FROM AUTHOR]

Background: Hospital accreditation programs are internationally widespread and consume increasingly scarce health resources. However, we lack tools to consistently identify suitable indicators to assess and monitor accreditation outcomes. We describe the development and validation of such a tool. Results: Using Australian accreditation standards as our reference point we: reviewed the research evidence for potential indicators; looked for links with existing external indicators; and assessed relevant state and federal policies. We allocated provisional scores, on a five point Likert scale, to the five accountability criteria in the tool: research; accuracy; proximity; no adverse effects; and specificity. An expert panel validated the use of the purpose designed indicator assessment tool. The panel identified hand hygiene compliance rates as a suitable process indicator, and hospital acquired Staphylococcus aureus infection (SAB) rates as an outcome indicator, with the hypothesis that improved hand hygiene compliance rates and lower SAB rates would correlate with accreditation performance. Conclusions: This new tool can be used to identify, analyse, and compare accreditation indicators. Using infection control indicators such as hand hygiene compliance and SAB rates to measure accreditation effectiveness has merit, and their efficacy can be determined by comparing accreditation scores with indicator outcomes. To verify the tool as a robust instrument, testing is needed in other health service domains, both in Australia and internationally. This tool provides health policy makers with an important means for assessing the accreditation programs which form a critical part of the national patient safety and quality framework. [ABSTRACT FROM AUTHOR]

Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role. [ABSTRACT FROM AUTHOR]

Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice. [ABSTRACT FROM AUTHOR]

Background: A relational approach to autonomy refers to the way in which social conditions and relationships shape a person's self-identity and capacity in decision-making. This article provides an empirical account of how treatment choices for women undergoing breast diseases care are fostered within the dynamics of their relationships with clinicians, family members, and other aspects of their social environment.Methods: This qualitative study recruited ten women undergoing treatment at a breast programme, and eight clinicians supporting their care, in a private teaching hospital in New South Wales, Australia. Fourteen patient-clinician consultation observations and 17 semi-structured interviews were conducted. Schema analysis of interview transcripts were undertaken by a team of researchers and corroborated by observational fieldnotes.Results: Relational identities of patients influenced the rationale for treatment decision-making. Patients drew on supportive resources from family and medical advice from clinicians to progress with treatment goals. While clinicians held much social power over patients as the medical experts, patients highlighted the need for clinicians to earn their trust through demonstrated professionalism. Information exchange created a communicative space for clinicians and patients to negotiate shared values, promoting greater patient ownership of treatment decisions. As treatment progressed, patients' personal experiences of illness and treatment became a source of self-reflection, with a transformative impact on self-confidence and assertiveness.Conclusion: Patients' confidence and self-trust can be fostered by opportunities for communicative engagement and self-reflection over the course of treatment in breast disease, and better integration of their self-identity and social values in treatment decisions. [ABSTRACT FROM AUTHOR]

Objectives: Apathy is the most common behavioral symptom of amyotrophic lateral sclerosis (ALS). Despite its known impact on caregiver wellbeing, apathy is typically considered a unitary construct making assessment and targeting treatment problematic. The aim of this study was to explore the relationship between caregiver burden and the behavioral, cognitive, and emotional symptoms of apathy in ALS. Methods: Fifty-one ALS patient-caregiver dyads from an ALS/frontotemporal dementia Clinic were assessed with the Apathy Evaluation Scale which measured the cognitive, behavioral, emotional, and nonspecific symptoms of apathy as well as the Zarit Burden Interview, a measure of perceived burden among caregivers of cognitively impaired older adults. The relationship between apathy and caregiver burden were analyzed using univariate and multivariate methods. Results: Apathy was identified in 18% of ALS patients. Greater behavioral (p = 0.011) and nonspecific (p = 0.010) symptoms of apathy exhibited by patients were reported by caregivers with higher levels of burden compared to caregivers with lower levels of burden. Of the cognitive, behavioral, emotional, and nonspecific symptoms of apathy, only the behavioral symptoms explained a significant amount of variance in caregiver burden (p = 0.031). Conclusions: Apathy, specifically the behavioral symptoms of apathy was associated with higher burden of care among ALS caregivers, highlighting the importance of multidimensional assessment of apathy and provision of behavior management support as part of ALS care. [ABSTRACT FROM AUTHOR]

Abstract: Rationale, aims, and objectives: “Implementation science,” the scientific study of methods translating research findings into practical, useful outcomes, is contested and complex, with unpredictable use of results from routine clinical practice and different levels of continuing assessment of implementable interventions. The authors aim to reveal how implementation science is presented and understood in health services research contexts and clarify the foundational concepts: diffusion, dissemination, implementation, adoption, and sustainability, to progress knowledge in the field. Method: Implementation science models, theories, and frameworks are critiqued, and their value for laying the groundwork from which to implement a study's findings is emphasised. The paper highlights the challenges of turning research findings into practical outcomes that can be successfully implemented and the need for support from change agents, to ensure improvements to health care provision, health systems, and policy. The paper examines how researchers create implementation plans and what needs to be considered for study outputs to lead to sustainable interventions. This aspect needs clear planning, underpinned by appropriate theoretical paradigms that rigorously respond to a study's aims and objectives. Conclusion: Researchers might benefit from a return to first principles in implementation science, whereby applications that result from research endeavours are both effective and readily disseminated and where interventions can be supported by appropriate health care personnel. These should be people specifically identified to promote change in service organisation, delivery, and policy that can be systematically evaluated over time, to ensure high‐quality, long‐term improvements to patients' health. [ABSTRACT FROM AUTHOR]

Background: Agencies promoting national health‐care accreditation reform to improve the quality of care and safety of patients are largely working without specific blueprints that can increase the likelihood of success. Objective: This study investigated the development and implementation of the Australian Health Service Safety and Quality Accreditation Scheme and National Safety and Quality Health Service Standards (the Scheme), their expected benefits, and challenges and facilitators to implementation. Methods: A multimethod study was conducted using document analysis, observation and interviews. Data sources were eight government reports, 25 h of observation and 34 interviews with 197 diverse stakeholders. Results: Development of the Scheme was achieved through extensive consultation conducted over a prolonged period, that is, from 2000 onwards. Participants, prior to implementation, believed the Scheme would produce benefits at multiple levels of the health system. The Scheme offered a national framework to promote patient‐centred care, allowing organizations to engage and coordinate professionals’ quality improvement activities. Significant challenges are apparent, including developing and maintaining stakeholder understanding of the Scheme's requirements. Risks must also be addressed. The standardized application of, and reliable assessment against, the standards must be achieved to maintain credibility with the Scheme. Government employment of effective stakeholder engagement strategies, such as structured consultation processes, was viewed as necessary for successful, sustainable implementation. Conclusion: The Australian experience demonstrates that national accreditation reform can engender widespread stakeholder support, but implementation challenges must be overcome. In particular, the fundamental role of continued stakeholder engagement increases the likelihood that such reforms are taken up and spread across health systems. [ABSTRACT FROM AUTHOR]

Background: The study objective was to identify and describe the process, resources and expertise required for the revision of accreditation standards, and report outcomes arising from such activities. Methods: Secondary document analysis of materials from an accreditation standards development agency. The Royal Australian College of General Practitioners’ (RACGP) documents, minutes and reports related to the revision of the accreditation standards were examined. Results: The RACGP revision of the accreditation standards was conducted over a 12 month period and comprised six phases with multiple tasks, including: review methodology planning; review of the evidence base and each standard; new material development; constructing field trial methodology; drafting, trialling and refining new standards; and production of new standards. Over 100 individuals participated, with an additional 30 providing periodic input and feedback. Participants were drawn from healthcare professional associations, primary healthcare services, accreditation agencies, government agencies and public health organisations. Their expertise spanned: project management; standards development and writing; primary healthcare practice; quality and safety improvement methodologies; accreditation implementation and surveying; and research. The review and development process was shaped by five issues: project expectations; resource and time requirements; a collaborative approach; stakeholder engagement; and the product produced. The RACGP evaluation was that participants were positive about their experience, the standards produced and considered them relevant for the sector. Conclusions: The revision of accreditation standards requires considerable resources and expertise, drawn from a broad range of stakeholders. Collaborative, inclusive processes that engage key stakeholders helps promote greater industry acceptance of the standards. [ABSTRACT FROM AUTHOR]