Patient safety for people experiencing advanced dementia in hospital: A video reflexive ethnography.

BACKGROUND: Patient safety for people experiencing dementia in acute hospitals is a global priority. Despite national strategies as well as safety and quality guidelines, how safety practices are enacted within the complexities of everyday work are poorly understood and articulated. METHODS: Using video reflexive ethnography, this 18-month study was conducted within an inpatient geriatric evaluation and management unit for people experiencing dementia and/or delirium in Australia. Patients, family members, and staff members participated by: allowing researchers to document fieldwork notes and video-record their practices and/or accounts thereof; and/or interpreting video-recordings with researchers to co-analyse and make sense of the data. RESULTS: Safe care for people experiencing advanced dementia involved: negotiating risk via leadership, teamwork, and transparency; practice-based learning through situated adaptation; managing personhood versus protocols by doing the 'right' thing; joyful and meaningful work; as well as incorporating patient and family voices to do safety together. CONCLUSION: Patient safety for people experiencing dementia requires continuous responsiveness and prioritising in the context of multiple risks by a staff collective with a shared purpose. Ongoing research to better understand how the nuances of patient safety unfold in everyday complex clinical realities in diverse contexts and with key stakeholders is required.

Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects.

To assess the effects of consumer engagement in health care policy, research and services. We updated a review published in 2006 and 2009 and revised the previous search strategies for key databases (The Cochrane Central Register of Controlled Trials; MEDLINE; EMBASE; PsycINFO; CINAHL; Web of Science) up to February 2020. Selection criteria included randomised controlled trials assessing consumer engagement in developing health care policy, research, or health services. The International Association for Public Participation, Spectrum of Public Participation was used to identify, describe, compare and analyse consumer engagement. Outcome measures were effects on people; effects on the policy/research/health care services; or process outcomes. We included 23 randomised controlled trials with a moderate or high risk of bias, involving 136,265 participants. Most consumer engagement strategies adopted a consultative approach during the development phase of interventions, targeted to health services. Based on four large cluster-randomised controlled trials, there is evidence that consumer engagement in the development and delivery of health services to enhance the care of pregnant women results in a reduction in neonatal, but not maternal, mortality. From other trials, there is evidence that involving consumers in developing patient information material results in material that is more relevant, readable and understandable for patients, and can improve knowledge. Mixed effects are reported of consumer-engagement on the development and/or implementation of health professional training. There is some evidence that using consumer interviewers instead of staff in satisfaction surveys can have a small influence on the results. There is some evidence that consumers may have a role in identifying a broader range of health care priorities that are complementary to those from professionals. There is some evidence that consumer engagement in monitoring and evaluating health services may impact perceptions of patient safety or quality of life. There is growing evidence from randomised controlled trials of the effects of consumer engagement on the relevance and positive outcomes of health policy, research and services. Health care consumers, providers, researchers and funders should continue to employ evidence-informed consumer engagement in their jurisdictions, with embedded evaluation. Systematic review registration: PROSPERO CRD42018102595.

Toward more mindful reporting of patient and public involvement in healthcare.

Understanding of the value of patient and public involvement in research has grown in recent years, but so too has uncertainty about how best to practice and how best to report such involvement in research outputs. One way proposed to report such involvement is through checklists, such as the GRIPP2, which aims to improve quality, transparency, and consistency in such reporting. We critique the unproblematised use of such a tool because of two main concerns. First, being asked to complete a GRIPP2 for a recent publication felt divisive given that the service user researcher was as much a member of the authorship team as the other researchers (whose involvement did not necessitate a checklist). Second, checklists do not actually address the power imbalances and tokenism that is rife in patient and public involvement in research. Indeed, the false sense of objectivity fostered by meeting the minimum requirements of the checklist means that researchers may not go further to engage in reflexive research practices and reporting. Rather than rote use of such checklists, we recommend mindful reflexive reporting in research outputs of patient and public involvement processes. We also recommend future iterations of the GRIPP consider (a) incorporating criteria about whether the checklist is completed by or with service user researchers or not, (b) addressing criteria that position service user research as needing to be justified, and (c) expanding the "critical perspective" element of the checklist to explicitly consider power differentials.

Checklists (such as the GRIPP2) have been proposed as a way to improve how research papers report patient and public involvement in research projects. We were recently asked to complete a GRIPP2 as part of a peer review process, and it felt divisive. AB­a service user researcher­was just as much a part of the research team as was BS­a critical health psychologist. However, the role of BS in the research did not have to be justified or reported in the same way that was being asked of AB. A further concern about being required to use the checklist was that it did not necessarily lead to better reporting. Rather, it created a false sense of objectivity about patient and public involvement, and this might serve to hide power imbalances and tokenism in the research process. We recommend that instead of relying on such checklists, that researchers, reviewers, editors and readers reflect on patient and public involvement processes and the ways in which these are reported. We also make recommendations to make future iterations of the GRIPP more inclusive.

Fundamental care for people with cognitive impairment in the hospital setting: A study combining positive organisational scholarship and video-reflexive ethnography.

AIMS AND OBJECTIVES: To clarify how high-quality fundamentals of care for people with dementia and/or delirium were practised in a specialist geriatric evaluation and management unit. BACKGROUND: Older people with cognitive impairment represent a significant number of people who are admitted to hospital. They are at increased risk of dying, readmission and long hospital stays, relative to those without cognitive impairment. There is an urgent need to elucidate the conditions that underpin safe and high-quality fundamental care for these patients and their families. METHODS: Using the innovative methodologies of positive organisational scholarship in healthcare and video-reflexive ethnography, this 18-month study was conducted within an inpatient geriatric evaluation and management unit for people with dementia and/or delirium in South Australia. Patients, family members and staff members (managerial, clinical and nonclinical) participated by allowing researchers to document ethnographic fieldwork notes and film their practices and/or accounts thereof; and/or interpreting digital recordings with researchers in order to make sense of data in a process of co-analysis. This study is reported using Standards for Reporting Qualitative Research reporting guidelines. RESULTS: High-quality fundamental care for people with dementia and/or delirium in hospital and their families was associated with the special space of the hospital unit; an aptitude for people with dementia; a capacity to translate person-centred fundamentals of care from rhetoric to reality; and an appreciation for teamwork. CONCLUSION: This study clarified how teams working in hospital can practise high-quality fundamentals of care for older people with dementia and/or delirium. Delivery of high-quality fundamental care in this setting was dependent, not only on nurses, but the entire ward team working cohesively in a "weave of commitment." RELEVANCE TO CLINICAL PRACTICE: Efforts to improve fundamental care for people with cognitive impairment need to encompass values and philosophy of person-centred care, including the contributions by all staff to care delivery.

Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis.

BACKGROUND: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. AIM: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. DESIGN: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625). DATA SOURCES: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers' leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool. RESULTS: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector. CONCLUSION: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.