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Public health agencies (PHAs) have increasingly incorporated social media into their communication mix during successive pandemics in the 21st century. However, the quality, timing, and accuracy of their health messages have varied significantly, resulting in mixed outcomes for communication, audience engagement, and pandemic management. This study aimed to identify factors influencing the effectiveness of pandemic-related health messages shared by PHAs on social media and to report their impact on public engagement as documented in the literature. A scoping literature review was conducted following a predefined protocol. An electronic search of 7 relevant databases and 5 grey literature repositories yielded 9,714 papers published between January 2003 and November 2022. Seventy-three papers were deemed eligible and selected for review. The results underscored the insufficiency of social media guidance policies for PHAs. Six themes were identified: message source, message topic, message style, message timing, content credibility and reliability, and message recipient profile. These themes encompassed 20 variables that could inform PHAs’ social media public health communication during pandemics. Additionally, the findings revealed potential interconnectedness among the variables, and this study concluded by proposing a conceptual model that expands upon existing theoretical foundations for developing and evaluating pandemic-related health messaging. [ABSTRACT FROM AUTHOR]

Background Hospitals invest extensive resources in large-scale initiatives to improve patient safety and quality at an organizational level. However, initial success, if any, does not guarantee longer-term improvement. Empirical and theoretical knowledge that informs hospitals on how to attain sustained improvement from large-scale change is lacking. Aim The proposed study aims to examine improvement sustainability of two large-scale initiatives in an Australian tertiary hospital and translate the lessons into strategies for achieving sustained improvement from large-scale change in hospital settings. Design and Methods The study employs a single-site, multiple-case study design to evaluate the initiatives separately and comparatively using mixed methods. Semi-structured staff interviews will be conducted in stratified cohorts across the organizational hierarchy to capture different perspectives from various staff roles involved in the initiatives. The output and impact of the initiatives will be examined through organizational documents and relevant routinely collected organizational indicators. The obtained data will be analyzed thematically and statistically before being integrated for a synergic interpretation. Implications Capturing a comprehensive organizational view of large-scale change, the findings will have the potential to guide the practice and contribute to the theoretical understandings for achieving meaningful and longer-term organizational improvement in patient safety and quality. [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: 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]

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]

Purpose Quality of care in the residential aged sector has changed over the past decade. The purpose of this paper is to examine these changes from the perspectives of staff to identify factors influencing quality of residential aged care, and the role and influence of an aged care accreditation programme.Design/methodology/approach Focus groups were held with 66 aged care staff from 11 Australian aged care facilities. Data from semi-structured interviews were analysed to capture categories representing participant views.Findings Participants reported two factors stimulating change: developments in the aged care regulatory and policy framework, and rising consumer expectations. Four corresponding effects on service quality were identified: increasing complexity of resident care, renewed built environments of aged care facilities, growing focus on resident-centred care and the influence of accreditation on resident quality of life. The accreditation programme was viewed as maintaining minimum standards of quality throughout regulatory and social change, yet was considered to lack capacity of itself to explicitly promote or improve resident quality of life.Research limitations/implications For an increasingly complex aged care population, regulatory and societal change has led to a shift in service provision from institutional care models to one that is becoming more responsive to consumer expectations. The capacity of long-established and relatively static accreditation standards to better accommodate changing consumer needs comes into question.Originality/value This is the first study to examine the relationship between accreditation and residential aged care service quality from the perspectives of staff, and offers a nuanced view of “quality” in this setting. [ABSTRACT FROM AUTHOR]

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]

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]

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]

This perspectives paper discusses patient-centered care for people living with motor neuron disease. We identify challenges and offer solutions from the patient-centered care literature for this population in frontline care, service delivery, research and health system organization. Examples from Australian and international motor neuron disease care are used to illustrate interrelated issues for practice and policy.

Objectives: Gastrostomy decision making is a complicated, multifaceted process for people with motor neuron disease (MND). This study explored demographic and disease-related factors that may impact on gastrostomy uptake; and reasons why people with MND accepted or declined gastrostomy, with a focus on how perceptions of swallowing and nutrition may influence decision making., Design: Prospective, cross sectional, mixed methods., Setting: An Australian multidisciplinary, specialty MND Service., Participants: 33 patients were recommended gastrostomy by the treating medical specialist. 16 of 33 were invited to participate in the prospective decision making study; of whom 10 provided informed consent., Primary and Secondary Outcome Measures: Demographic and disease-related factors contributing to uptake are described. A stepped approach was applied to gain a comprehensive understanding of why people with MND accept or decline gastrostomy. Instruments included standardised assessments, nutrition survey and semistructured interview. Data were collected at three separate appointments, spanning a 3-week period., Results: Gastrostomy uptake was 73% following medical specialist recommendation. Participants took days, weeks or months to consider their preferences, with lengthy hospital waiting times for the procedure. Gender, site of onset and rate of disease progression were observed to contribute to uptake. Age and symptom duration did not. Integration of quantitative and qualitative data suggests that patient perceptions of swallowing and nutrition contribute to gastrostomy acceptance; however, the decision making process is heterogeneous and these factors may not be the sole or primary reasons for acceptance. Other reported factors included: reducing carer burden, improving quality of life, increasing independence, continuing participation in social outings and gaining control., Conclusions: Future research may give greater insight into how healthcare organisations can better facilitate gastrostomy decision making, to meet the needs of people living with MND. Larger, prospective, multisite studies may build on these findings to better inform clinical guidelines and minimise the impacts of delayed gastrostomy insertion., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Workspaces are socially constructed environments where social relationships are produced, reproduced, challenged and transformed. Their primary function is to support high-quality service delivery to the benefit of 'patients'. They are also settings where employees can work effectively, in a safe and healthy environment, delivering a high-quality service according to a 'Work-As-Done' rather than a 'Work-As-Imagined' model. However, hospital design is currently based on a managerial understanding of work accomplishments, often falling short of understanding what is actually happening on the ground. Furthermore, the research landscape lacks rigorous assessment of these complex sociological and health research concepts, either within the Australian context where this protocol is set, or internationally.This paper describes an innovative protocol aimed at examining healthcare employees' and organisations' concerns and beliefs in workspace design. It outlines research investigating the effect of workspace use on productivity, health and safety and worker satisfaction, to clarify Work-As-Done, while creating healthy and more fulfilling environments., Methods: This is a proof-of-concept study, taking place between June 2018 and April 2019, employing a multimethod, qualitative approach for in-depth assessment of one Australian, private, university hospital environment, using as its 'case' the Gastroenterology Surgical Unit. It involves (1) observations and informal interviews (shadowing) with employees and patients as they traverse hospital spaces and (2) visual data of spatial use. Fieldnotes will be analysed thematically, and visual data analysed using a predefined schematic framework (a visual taxonomy). Overarching themes and categories will be considered corroboratively, mixing visual and textual data to build an iterative and dynamic picture., Ethics and Dissemination: Ethical considerations will be discussed, while approval has been granted by the University's Human Research Ethics Committee (HREC/5201800282), along with Governance approved by the Health Clinical Research Executive (CRG2018005). Study results will be disseminated through publications, research conferences and public reports., Competing Interests: Competing interests: JC is an employee of the case site and will not, therefore, be involved in data analysis., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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.

Introduction: Motor neuron disease (MND) is a terminal, progressive, multisystem disorder. Well-timed decisions are key to effective symptom management. To date, there are few published decision support tools, also known as decision aids, to guide patients in making ongoing choices for symptom management and quality of life. This protocol is to develop and validate decision support tools for patients and families to use in conjunction with health professionals in MND multidisciplinary care. The tools will inform patients and families of the benefits and risks of each option, as well as the consequences of accepting or declining treatment., Methods and Analysis: The study is being conducted from June 2015 to May 2016, using a modified Delphi process. A 2-stage, 7-step process will be used to develop the tools, based on existing literature and stakeholder feedback. The first stage will be to develop the decision support tools, while the second stage will be to validate both the tools and the process used to develop them. Participants will form expert panels, to provide feedback on which the development and validation of the tools will be based. Participants will be drawn from patients with MND, family carers and health professionals, support association workers, peak body representatives, and MND and patient decision-making researchers., Ethics and Dissemination: Ethical approval for the study has been granted by Macquarie University Human Research Ethics Committee (HREC), approval number 5201500658. Knowledge translation will be conducted via publications, seminar and conference presentations to patients and families, health professionals and researchers., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Objectives: To assess the costs of hospital accreditation in Australia., Design: Mixed methods design incorporating: stakeholder analysis; survey design and implementation; activity-based costs analysis; and expert panel review., Setting: Acute care hospitals accredited by the Australian Council for Health Care Standards., Participants: Six acute public hospitals across four States., Results: Accreditation costs varied from 0.03% to 0.60% of total hospital operating costs per year, averaged across the 4-year accreditation cycle. Relatively higher costs were associated with the surveys years and with smaller facilities. At a national level these costs translate to $A36.83 million, equivalent to 0.1% of acute public hospital recurrent expenditure in the 2012 fiscal year., Conclusions: This is the first time accreditation costs have been independently evaluated across a wide range of hospitals and highlights the additional cost burden for smaller facilities. A better understanding of the costs allows policymakers to assess alternative accreditation and other quality improvement strategies, and understand their impact across a range of facilities. This methodology can be adapted to assess international accreditation programmes., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

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.

Objectives: The study aims are twofold. First, to investigate the suitability of hand hygiene as an indicator of accreditation outcomes and, second, to test the hypothesis that hospitals with better accreditation outcomes achieve higher hand hygiene compliance rates., Design: A retrospective, longitudinal, multisite comparative survey., Setting: Acute public hospitals in New South Wales, Australia., Participants: 96 acute hospitals with accreditation survey results from two surveys during 2009-2012 and submitted data for more than four hand hygiene audits between 2010 and 2013., Outcomes: Our primary outcome comprised observational hand hygiene compliance data from eight audits during 2010-2013. The explanatory variables in our multilevel regression model included: accreditation outcomes and scores for the infection control standard; timing of the surveys; and hospital size and activity., Results: Average hand hygiene compliance rates increased from 67.7% to 80.3% during the study period (2010-2013), with 46.7% of hospitals achieving target compliance rates of 70% in audit 1, versus 92.3% in audit 8. Average hand hygiene rates at small hospitals were 7.8 percentage points (pp) higher than those at the largest hospitals (p<0.05). The association between hand hygiene rates, accreditation outcomes and infection control scores is less clear., Conclusions: Our results indicate that accreditation outcomes and hand hygiene audit data are measuring different parts of the quality and safety spectrum. Understanding what is being measured when selecting indicators to assess the impact of accreditation is critical as focusing on accreditation results would discount successful hand hygiene implementation by smaller hospitals. Conversely, relying on hand hygiene results would discount the infection control related research and leadership investment by larger hospitals. Our hypothesis appears to be confounded by an accreditation programme that makes it more difficult for smaller hospitals to achieve high infection control scores., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)