Exploring the impact of employee engagement and patient safety.

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 coronavirus disease 2019 (COVID-19) pandemic. OBJECTIVE: The aim of this review was to explore the current literature on the impact of employee engagement on patient safety. 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 Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline Complete, Scopus, Health Business Elite and Business Source Ultimate databases. A search of grey literature using the Bielefeld Academic Search Engine database was also completed. RESULTS: Of relevant articles, 3693 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.

Exploring interdisciplinary teamwork to support effective ward rounds.

PURPOSE: This paper aims to explore if health professionals share understanding of teamwork that supports collaborative ward rounds. DESIGN/METHODOLOGY/APPROACH: A purpose-designed survey was conducted in two acute medical and two rehabilitation wards from a metropolitan teaching hospital. Medical officers, nurses and allied health professionals participated. To understand characteristics that support collaborative ward rounds, questions developed from literature and industry experience asked: what are the enablers and challenges to teamwork; and what are clinicians' experiences of positive teamwork? Descriptive and thematic analyses were applied to the dimensions of effective teamwork as a framework for deductive coding. FINDINGS: Seventy-seven clinicians participated (93% response rate). Findings aligned with dimensions of teamwork framework. There was no meaningful difference between clinicians or specialty. Enablers to teamwork were: effective communication, shared understanding of patient goals, and colleague's roles. Challenges were ineffective communication, individual personalities, lack of understanding about roles and responsibilities, and organisational structure. Additional challenges included: time; uncoordinated treatment planning; and leadership. Positive teamwork was influenced by leadership and team dynamics. PRACTICAL IMPLICATIONS: Ward rounds benefit from a foundation of collaborative teamwork. Different dimensions of teamwork present during ward rounds support clinicians' shared understanding of roles, expectations and communication. ORIGINALITY/VALUE: Rounds such as structured rounding, aim to improve teamwork. Inverting this concept to first develop effective collaboration will support team adaptability and resilience. This enables teams to transition between the multiple rounding processes undertaken in a single ward. The emphasis becomes high-quality teamwork rather than a single rounding process.

Appraising risk in active surveillance of localized prostate cancer.

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.

Relational autonomy in breast diseases care: a qualitative study of contextual and social conditions of patients' capacity for decision-making.

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.

Women's Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The "Lives at Risk Study".

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.

Levers for change: an investigation of how accreditation programmes can promote consumer engagement in healthcare.

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.

A hybrid health service accreditation program model incorporating mandated standards and continuous improvement: interview study of multiple stakeholders in Australian health care.

The study aim was to investigate the understandings and concerns of stakeholders regarding the evolution of health service accreditation programs in Australia. Stakeholder representatives from programs in the primary, acute and aged care sectors participated in semi-structured interviews. Across 2011-12 there were 47 group and individual interviews involving 258 participants. Interviews lasted, on average, 1 h, and were digitally recorded and transcribed. Transcriptions were analysed using textual referencing software. Four significant issues were considered to have directed the evolution of accreditation programs: altering underlying program philosophies; shifting of program content focus and details; different surveying expectations and experiences and the influence of external contextual factors upon accreditation programs. Three accreditation program models were noted by participants: regulatory compliance; continuous quality improvement and a hybrid model, incorporating elements of these two. Respondents noted the compatibility or incommensurability of the first two models. Participation in a program was reportedly experienced as ranging on a survey continuum from "malicious compliance" to "performance audits" to "quality improvement journeys". Wider contextual factors, in particular, political and community expectations, and associated media reporting, were considered significant influences on the operation and evolution of programs. A hybrid accreditation model was noted to have evolved. The hybrid model promotes minimum standards and continuous quality improvement, through examining the structure and processes of organisations and the outcomes of care. The hybrid model appears to be directing organisational and professional attention to enhance their safety cultures. Copyright © 2015 John Wiley & Sons, Ltd.

Ward rounds, participants, roles and perceptions: literature review.

Purpose - The purpose of this paper is to classify and describe the purpose of ward rounds, who attends each round and their role, and participants' perception of each other's role during the respective ward rounds. Design/methodology/approach - A literature review of face-to-face ward rounds in medical wards was conducted. Peer reviewed journals and government publications published between 2000 and 2014 were searched. Articles were classified according to the type of round described in the study. Purposes were identified using keywords in the description of why the round was carried out. Descriptions of tasks and interactions with team members defined participant roles. Findings - Eight round classifications were identified. The most common were the generalised ward; multidisciplinary; and consultant rounds. Multidisciplinary rounds were the most collaborative round. Medical officers were the most likely discipline to attend any round. There was limited reference to allied health clinicians and patient involvement on rounds. Perceptions attendees held of each other reiterated the need to continue to investigate teamwork. Practical implications - A collaborative approach to care planning can occur by ensuring clinicians and patients are aware of different ward round processes and their role in them. Originality/value - Analysis fulfils a gap in the literature by identifying and analysing the different ward rounds being undertaken in acute medical wards. It identifies the complexities in the long established routine hospital processes of the ward round.

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

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.

Analysing 'big picture' policy reform mechanisms: the Australian health service safety and quality accreditation scheme.

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.

A longer diagnostic interval is a risk for depression in amyotrophic lateral sclerosis.

OBJECTIVE: Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression. METHOD: Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale-21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). RESULTS: At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS-R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ²(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05. SIGNIFICANCE OF RESULTS: The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers.

A mechanism for revising accreditation standards: a study of the process, resources required and evaluation outcomes.

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.

Implementing health system improvement: resources and strategies for interprofessional teams.

Health system improvement (HSI) is focused on systematic changes to organisational processes and practices to improve the efficient delivery of safe care and quality outcomes. Guidelines that specify how interprofessional teams conduct HSI and knowledge translation are needed. We address this urgent requirement providing health professional teams with resources and strategies to investigate, analyse and implement system-level improvements. HSI encompasses similar, yet different, inter-related activities across a continuum. The continuum spans three categories of activities, such as quality improvement, health management research and translational health management research. A HSI decision making guide and checklist, comprising six-steps, is presented that can be used to select and plan projects. This resource comprises six interconnected steps including, defining the activity, project outcome, aim, use of evidence, appropriate methodology and implementation plan. Each step has been developed focusing on an objective, actions and resources. HSI activities provide a foundation for interprofessional collaboration, allowing multiple professions to create, share and disseminate knowledge for improved healthcare. When planned and executed well, HSI projects assist clinical and corporate staff to make evidence-informed decisions and directions for the benefit of the service, organisation and sector.

Looking Back, Looking Forward: A Study Protocol for a Mixed-Methods Multiple-Case Study to Examine Improvement Sustainability of Large-Scale Initiatives in Tertiary Hospitals.

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.

Public health agencies' use of social media for communication during pandemics: a scoping review of the literature.

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.

The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.

Motor neurone disease/amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, where death is usually secondary to progressive respiratory failure. Assisting people with ALS through their disease journey is complex and supported by clinics that provide comprehensive multidisciplinary care (MDC). This review aims to apply both a respiratory and a complexity lens to the key roles and areas of practice within the MDC model in ALS. Models of noninvasive ventilation care, and considerations in the provision of palliative therapy, respiratory support, and speech and language therapy are discussed. The impact on people living with ALS of both inequitable funding models and the complexity of clinical care decisions are illustrated using case vignettes. Considerations of the impact of emerging antisense and gene modifying therapies on MDC challenges are also highlighted. The review seeks to illustrate how MDC members contribute to collective decision-making in ALS, how the sum of the parts is greater than any individual care component or health professional, and that the MDC per se adds value to the person living with ALS. Through this approach we hope to support clinicians to navigate the space between what are minimum, guideline-driven, standards of care and what excellent, person-centred ALS care that fully embraces complexity could be. Educational aims: To highlight the complexities surrounding respiratory care in ALS.To alert clinicians to the risk that complexity of ALS care may modify the effectiveness of any specific, evidence-based therapy for ALS.To describe the importance of person-centred care and shared decision-making in optimising care in ALS.

Sustaining improvement of hospital-wide initiative for patient safety and quality: a systematic scoping review.

BACKGROUND: Long-term sustained improvement following implementation of hospital-wide quality and safety initiatives is not easily achieved. Comprehensive theoretical and practical understanding of how gained improvements can be sustained to benefit safe and high-quality care is needed. This review aimed to identify enabling and hindering factors and their contributions to improvement sustainability from hospital-wide change to enhance patient safety and quality. METHODS: A systematic scoping review method was used. Searched were peer-reviewed published records on PubMed, Scopus, World of Science, CINAHL, Health Business Elite, Health Policy Reference Centre and Cochrane Library and grey literature. Review inclusion criteria included contemporary (2010 and onwards), empirical factors to improvement sustainability evaluated after the active implementation, hospital(s) based in the western Organisation for Economic Co-operation and Development countries. Numerical and thematic analyses were undertaken. RESULTS: 17 peer-reviewed papers were reviewed. Improvement and implementation approaches were predominantly adopted to guide change. Less than 6 in 10 (53%) of reviewed papers included a guiding framework/model, none with a demonstrated focus on improvement sustainability. With an evaluation time point of 4.3 years on average, 62 factors to improvement sustainability were identified and emerged into three overarching themes: People, Process and Organisational Environment. These entailed, as subthemes, actors and their roles; planning, execution and maintenance of change; and internal contexts that enabled sustainability. Well-coordinated change delivery, customised local integration and continued change effort were three most critical elements. Mechanisms between identified factors emerged in the forms of Influence and Action towards sustained improvement. CONCLUSIONS: The findings map contemporary empirical factors and their mechanisms towards change sustainability from a hospital-wide initiative to improve patient safety and quality. The identified factors and mechanisms extend current theoretical and empirical knowledgebases of sustaining improvement particularly with those beyond the active implementation. The provided conceptual framework offers an empirically evidenced and actionable guide to assist sustainable organisational change in hospital settings.

MiNDAUS partnership: a roadmap for the cure and management of motor Neurone disease.

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.

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective.

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.

Dimensions of safety culture: a systematic review of quantitative, qualitative and mixed methods for assessing safety culture in hospitals.

BACKGROUND: The study of safety culture and its relationship to patient care have been challenged by variation in definition, dimensionality and methods of assessment. This systematic review aimed to map methods to assess safety culture in hospitals, analyse the prevalence of these methods in the published research literature and examine the dimensions of safety culture captured through these processes. METHODS: We included studies reporting on quantitative, qualitative and mixed methods to assess safety culture in hospitals. The review was conducted using four academic databases (PubMed, CINAHL, Scopus and Web of Science) with studies from January 2008 to May 2020. A formal quality appraisal was not conducted. Study purpose, type of method and safety culture dimensions were extracted from all studies, coded thematically, and summarised narratively and using descriptive statistics where appropriate. RESULTS: A total of 694 studies were included. A third (n=244, 35.2%) had a descriptive or exploratory purpose, 225 (32.4%) tested relationships among variables, 129 (18.6%) evaluated an intervention, while 13.8% (n=96) had a methodological focus. Most studies exclusively used surveys (n=663; 95.5%), with 88 different surveys identified. Only 31 studies (4.5%) used qualitative or mixed methods. Thematic analysis identified 11 themes related to safety culture dimensions across the methods, with 'Leadership' being the most common. Qualitative and mixed methods approaches were more likely to identify additional dimensions of safety culture not covered by the 11 themes, including improvisation and contextual pressures. DISCUSSION: We assessed the extent to which safety culture dimensions mapped to specific quantitative and qualitative tools and methods of assessing safety culture. No single method or tool appeared to measure all 11 themes of safety culture. Risk of publication bias was high in this review. Future attempts to assess safety culture in hospitals should consider incorporating qualitative methods into survey studies to evaluate this multi-faceted construct.