Assessing the impact of an online dementia awareness initiative co-created with and for English, Arabic and Vietnamese speaking communities: A case study.

BACKGROUND: Awareness and understanding of dementia remain limited in ethnically diverse populations in multicultural societies due to culturally inappropriate and inaccessible information. OBJECTIVE: To establish the impact, helpers and hinderers of an online multilingual dementia awareness initiative co-created with and for English, Arabic and Vietnamese speaking people. DESIGN: A case study using mixed methods to assess the impact and implementation of an information session on dementia knowledge. SETTING AND PARTICIPANTS: The study was conducted with English, Arabic and Vietnamese speaking individuals in Canterbury-Bankstown, Australia. INTERVENTION STUDIED: A dementia alliance co-created an online multilingual dementia information session, which was delivered synchronously in English, Arabic and Vietnamese by trained facilitators. MAIN OUTCOME MEASURES: In-session group discussions, quizzes and a postsession survey assessed the impact on dementia knowledge. A postimplementation focus group explored the factors that helped and hindered the initiative. RESULTS: The online dementia information session successfully supported participants understanding of dementia causes, impacts and care strategies. The initiative was hindered by competing priorities and limited accessibility to target audiences, while it was helped by the support of an established organisation and feedback mechanisms. DISCUSSION: Ongoing dementia education and awareness-raising campaigns that are culturally sensitive are needed in communities to promote dementia literacy and help-seeking. CONCLUSIONS: An online multilingual dementia information session can be an effective way to improve dementia literacy and advocate for change in multicultural communities. PATIENT OR PUBLIC CONTRIBUTION: English, Arabic and Vietnamese speaking members of the Canterbury Bankstown Dementia Alliance participated in the co-creation and evaluation of this initiative.

New consensus definition on defining and measuring care for children with paediatric feeding disorder.

AIM: This study addresses the absence of a definition of care for children with feeding disorders, limited agreement on key performance indicators (KPIs), and the lack of data linked to those KPIs. METHODS: Clinicians, consumers and researchers involved in outpatient feeding care in New South Wales (NSW), Australia were invited to participate in a two-Phase study. In Phase 1, a modified Delphi method was used. Two rounds of voting resulted in a new consensus definition of a multidisciplinary paediatric feeding clinic. Three further rounds voting determined relevant KPIs. In Phase 2, the KPIs were piloted prospectively in 10 clinics. RESULTS: Twenty-six clinicians, consumers and researchers participated in Phase 1. Participation across five voting rounds declined from 92% to 60% and a valid definition and KPI set were created. In Phase 2, the definition and KPIs were piloted in 10 clinics over 6 weeks. Data for 110 patients were collected. The final KPI set of 28 measures proposed covers clinical features, patient demographics and medical issues, parent-child interaction and outcome measures. CONCLUSIONS: A new definition of a multidisciplinary paediatric feeding clinic is now available, linked to a standardised KPI set covering relevant performance measures. These proved viable in baseline data collection for 10 clinics across NSW. This sets a foundation for further data collection, systematic measurement of care provision and outcomes, and research needed to deliver care improvement for children with paediatric feeding disorder.

Family member and service provider experiences and perspectives of a digital surveillance and service navigation approach in multicultural context: a qualitative study in identifying the barriers and enablers to Watch Me Grow-Electronic (WMG-E) program with a culturally diverse community.

BACKGROUND: Children and families from priority populations experienced significant psychosocial and mental health issues to the COVID-19 pandemic. Yet they also faced significant barriers to service access, particularly families from culturally and linguistically diverse (CALD) backgrounds. With most child and family health nurse clinics ceasing in-person consultations due to the pandemic, many children missed out on health and developmental checks. The aim of this study was to investigate the perspectives and experiences of family members and service providers from an urban, CALD community regarding the implementation of a digital, developmental surveillance, Watch Me Grow-Electronic (WMG-E) program. METHODS: Semi-structured interviews were conducted with 17 family members, service navigators, and service providers in a multicultural community in South Western Sydney, Australia. This qualitative study is an implementation evaluation which formed as part of a larger, two-site, randomised controlled trial of the WMG-E program. A reflexive thematic analysis approach, using inductive coding, was adopted to analyse the data. RESULTS: Participants highlighted the comprehensive and personalised support offered by existing child and family health services. The WMG-E was deemed beneficial because the weblink was easy and quick to use and it enabled access to a service navigator who support family access to relevant services. However, the WMG-E was problematic because of technology or language barriers, and it did not facilitate immediate clinician involvement when families completed the weblink. CONCLUSIONS: Families and service providers in this qualitative study found that using WMG-E empowered parents and caregivers to access developmental screening and learn more about their child's development and engage with relevant services. This beds down a new and innovative solution to the current service delivery gap and create mechanisms that can engage families currently not accessing services, and increases knowledge around navigating the health and social care services. Notwithstanding the issues that were raised by families and service providers, which include accessibility challenges for CALD communities, absence of clinical oversight during screening, and narrow scope of engagement with available services being offered, it is worth noting that improvements regarding these implementation factors must be considered and addressed in order to have longevity and sustainability of the program. TRIAL REGISTRATION: The study is part of a large randomised controlled trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement.

'The palliative care ambulance': A qualitative study of patient and caregiver perspectives of an ambulance service.

BACKGROUND: The need for home-based palliative care is accelerating internationally. At the same time, health systems face increased complexity, funding constraints and global shortages in the healthcare workforce. As such, ambulance services are increasingly tasked with providing palliative care. Where paramedics with additional training in palliative care have been integrated into models of care, evaluations have been largely positive. Studies of patient and family carer experiences of paramedic involvement, however, are limited. AIM: To explore patient and family caregiver experiences of paramedics' contribution to palliative care at home. DESIGN: Qualitative interview study. We analysed data within a social constructionist epistemology using reflexive thematic analysis. SETTING/PARTICIPANTS: Participants receiving specialist palliative care in the community of a metropolitan city of Australia who requested an ambulance between January and August 2018, inclusive. RESULTS: Participants considered paramedics with expertise and experience in palliative care as an extension of the specialist community palliative care team and held them in high regard. Participants highlighted the importance of: critical palliative care at home and a timely, responsive approach; person-centred paramedics; as well as safety and security. CONCLUSION: Patients and carers feel safe and secure when they know that highly responsive skilled professional support is available when an unexpected problem or sudden change arises, especially out-of-hours, and that support is delivered in an empathic and person-centred manner.

'When a patient chooses to die at home, that's what they want comfort, home': Brilliance in community-based palliative care nursing.

INTRODUCTION: To redress the scholarly preoccupation with gaps, issues, and problems in palliative care, this article extends previous findings on what constitutes brilliant palliative care to ask what brilliant nursing practices are supported and promoted. METHODS: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). From August 2015 to May 2017, inclusive, nurses affiliated with a community health service who delivered palliative care, contributed to this study as co-researchers (n = 4) or participants (n = 20). Patients who received palliative care (n = 30) and carers (n = 16) contributed as secondary participants, as they were part of observed instances of palliative care. With a particular focus on the practices and experiences that exceeded expectations and brought joy and delight, the study involved capturing video-recordings of community-based palliative care in situ; reflexively analysing the recordings with the nurses; as well as ethnography to witness, experience, and understand practices and experiences. Data were analysed, teleologically, to clarify what brilliant practices were supported and promoted. RESULTS: Brilliant community-based palliative care nursing largely involved maintaining normality in patients' and carers' lives. The nurses demonstrated this by masking the clinical aspects of their role, normalising these aspects, and appreciating alternative 'normals'. CONCLUSION: Redressing the scholarly preoccupation with gaps, issues, and problems in palliative care, this article demonstrates how what is ordinary is extraordinary. Specifically, given the intrusiveness and abnormalising effects of technical clinical interventions, brilliant community-based palliative care can be realised when nurses enact practices that serve to promote a patient or carer to normality. PATIENT OR PUBLIC CONTRIBUTION: Patients and carers contributed to this study as participants, while nurses contributed to this study as co-researchers in the conduct of the study, the analysis and interpretation of the data, and the preparation of the article.

'it was that specialist that finally listened to us that's probably a weird answer to what you were expecting': Clinician and carer perspectives on brilliant feeding care.

INTRODUCTION: To extend research on positive aspects of health care, this article focusses on health care for children who tube-feed-this is because knowledge about tube-feeding for children is limited and fragmented. This is achieved by consulting with clinicians and carers who supported children who tube-feed to clarify their understandings of and experiences with brilliant feeding care. METHODS: Nine clinicians and nine carers who supported children who tube-fed were interviewed. The interview transcripts were analysed thematically. RESULTS: Findings highlighted several features of brilliant feeding care-namely: practices that go above and beyond; attentiveness; empowerment; being 'on the same page'; hopefulness and normalcy. CONCLUSIONS: These findings show that seemingly trivial or small acts of care can make a significant meaningful difference to carers of children who tube-feed. Such accounts elucidate brilliant care as grounded in feasible, everyday actions, within clinicians' reach. The implications associated with these findings are threefold. First, the findings highlight the need for clinicians to listen, be attuned and committed to the well-being of children who tube-feed and their carers, share decision-making, source resources, and instil hope. Second, the findings suggest that carers should seek out and acknowledge clinicians who listen, involve them in decision-making processes, and continue to source the resources required to optimize child and carer well-being. Third, the findings point to the need for research to clarify the models of care that foster brilliant feeding care, and the conditions required to introduce and sustain these models. PATIENT OR PUBLIC CONTRIBUTION: All of the carers and clinicians who contributed to this study were invited to participate in a workshop to discuss, critique, and sense-check the findings. Three carers and one clinician accepted this invitation. Collectively, they indicated that the findings resonated with them, and they agreed with the themes, which they indicated were well-substantiated by the data.

POMSNAME: an aide-mémoire to improve the assessment and documentation of palliative care - a longitudinal project.

BACKGROUND: Evidence-based palliative care requires comprehensive assessment and documentation. However, palliative care is not always systemically documented - this can have implications for team communication and patient wellbeing. The aim of this project was to determine the effectiveness of an aide-mémoire - POMSNAME - to prompt the comprehensive assessment of the following domains by clinicians: pain, orientation and oral health, mobility, social situation, nausea and vomiting, appetite, medication, and elimination. METHODS: A placard depicting the aide-mémoire was distributed to community-based nurses who received training and support. The case notes of palliative care patients were evaluated one month before the intervention, and was repeated at one month, eight months, and fifty months following the intervention. The 235 case notes pertained to patients who received palliative care from a team of 13 registered nurses at one community health service. RESULTS: The documented assessment of palliative care patients improved across all nine domains. The most significant improvements pertained to patients' social situation, orientation, and nausea, eight months after the aide-mémoire was introduced (170.1%, 116.9%, and 105.6%, respectively, all at p < .001). Although oral health and medication assessment declined one-month after the aide-mémoire was introduced (-41.7% and-2.1%, respectively), both subsequently improved, thereafter, at both 8 months and 50 months after the aide-mémoire was introduced. CONCLUSIONS: The improvement of palliative care documentation across all nine domains demonstrates the potential of the POMSNAME aide-mémoire to prompt the comprehensive assessment of patients by clinicians with generalist expertise. Research is required to determine whether other domains warrant inclusion and how.

Cues Disseminated by Professional Associations That Represent 5 Health Care Professions Across 5 Nations: Lexical Analysis of Tweets.

BACKGROUND: Collaboration across health care professions is critical in efficiently and effectively managing complex and chronic health conditions, yet interprofessional care does not happen automatically. Professional associations have a key role in setting a profession's agenda, maintaining professional identity, and establishing priorities. The associations' external communication is commonly undertaken through social media platforms, such as Twitter. Despite the valuable insights potentially available into professional associations through such communication, to date, their messaging has not been examined. OBJECTIVE: This study aimed to identify the cues disseminated by professional associations that represent 5 health care professions spanning 5 nations. METHODS: Using a back-iterative application programming interface methodology, public tweets were sourced from professional associations that represent 5 health care professions that have key roles in community-based health care: general practice, nursing, pharmacy, physiotherapy, and social work. Furthermore, the professional associations spanned Australia, Canada, New Zealand, the United Kingdom, and the United States. A lexical analysis was conducted of the tweets using Leximancer (Leximancer Pty Ltd) to clarify relationships within the discourse. RESULTS: After completing a lexical analysis of 50,638 tweets, 7 key findings were identified. First, the discourse was largely devoid of references to interprofessional care. Second, there was no explicit discourse pertaining to physiotherapists. Third, although all the professions represented in this study support patients, discourse pertaining to general practitioners was most likely to be connected with that pertaining to patients. Fourth, tweets pertaining to pharmacists were most likely to be connected with discourse pertaining to latest and research. Fifth, tweets about social workers were unlikely to be connected with discourse pertaining to health or care. Sixth, notwithstanding a few exceptions, the findings across the different nations were generally similar, suggesting their generality. Seventh and last, tweets pertaining to physiotherapists were most likely to refer to discourse pertaining to profession. CONCLUSIONS: The findings indicate that health care professional associations do not use Twitter to disseminate cues that reinforce the importance of interprofessional care. Instead, they largely use this platform to emphasize what they individually deem to be important and advance the interests of their respective professions. Therefore, there is considerable opportunity for professional associations to assert how the profession they represent complements other health care professions and how the professionals they represent can enact interprofessional care for the benefit of patients and carers.

What constitutes brilliant aged care? A qualitative study of practices that exceed expectation.

AIM: This study aimed to explore what constitutes brilliant aged care. BACKGROUND: Although many aged care services do not offer the care that older people and carers need and want, some perform better. Rather than focus on problems with aged care, this study examined brilliant aged care-practices that exceeded expectation. DESIGN: The methodology for this study was informed by grounded theory, underpinned by constructionism to socially construct meaning. METHODS: This study invited nominations for a Brilliant Award via a survey, and interviews with the nominees via web conference. After receiving survey responses from 10 nominators, interviews were conducted with 12 nominees. Data were analysed using reflexive thematic analysis and documented according to COREQ guidelines to optimise rigour and transparency. RESULTS: According to participants, brilliant aged care involved being relationally attuned to older people, a deep understanding of the older person, recognition of aged care as more than a job, innovative practices and permission to reprioritise. CONCLUSIONS: This study suggests that, in aged care, brilliance happens. It emphasises the importance of meaningful connections and relationships in aged care, where thoughtful acts acknowledge an older person's value and humanity as well as creativity and innovation. RELEVANCE TO CLINICAL PRACTICE: For those who manage and deliver aged care, the findings suggest that small practice changes can make a positive difference to older people. Brilliant aged care can involve acts of empathy; enthusiasm for aged care; innovative practices, even those that are small scale; and reprioritising workplace tasks to spend time with older people. For policymakers, this study highlights the need to recognise and raise the profile of the pockets of brilliance within the aged care sector. This might be achieved via awards and other initiatives that serve to celebrate and learn from brilliance in its myriad forms. PATIENT OR PUBLIC CONTRIBUTION: The nominees, who included carers, were invited to participate in workshops with other carers and older people to co-design a model of brilliant aged care, during which workshop participants discussed and critiqued the findings constructed from the data.

Coalescing, Cross-Pollinating, Crystalising: Developing and Evaluating an Art Installation About Health Knowledge.

The HIVE is an arts-based knowledge translation (ABKT) project that showcases work undertaken across Maridulu Budyari Gumal: the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE). Here, we present two distinct forms of data (reflective and evaluative) to tell the story of The HIVE and outline the project's achievements and shortcomings. Reflective data are used to describe the process of establishing a creative, cross-disciplinary collaboration, in order to devise and produce The HIVE. Evaluative data are used to assess the impact of The HIVE on audiences. By presenting reflective and evaluative data together, we highlight that impact in ABKT cannot be reduced to an assessment of audience engagement with an ABKT end-product. Although audience impact is vital, in our experience, The HIVE also had a powerful impact on the researchers, health service users, artists and others who worked together to create it. The process of creating The HIVE informed research- and art-practice change, forged interdisciplinary networks, and enabled the growth of new patterns of knowledge sharing and collaboration. The reflective and evaluative data we present attest to different forms of impact resulting from the creation and exhibition of an ABKT project.