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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.
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COVID-19 , Diversidade Cultural , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Criança , Família/psicologia , Acessibilidade aos Serviços de Saúde , Adulto , SARS-CoV-2 , Austrália , Serviços de Saúde da Criança/organização & administração , Navegação de Pacientes/organização & administração , Entrevistas como Assunto , Pessoa de Meia-IdadeRESUMO
Critiques of healthcare often focus on negative experiences to address gaps, issues, and problems. While important, this often obscures care that exceeds expectation - that is, brilliant care. This article centres brilliant care by considering the questions that might be asked to surface it, and what might happen when brilliant care is centred. Specifically, a conceptual understanding of brilliant care is extended within health sociology. In doing so, the article draws on Mol's research on the logic of care, Fredrickson's broaden-and-build theory, and Hochschild's notion of emotion work. Through an application of this conceptual framework to secondary data - namely, reported stories of healthcare experiences from the series 'What's right in health care' - the article demonstrates how the framework surfaces and illuminates aspects of brilliance and its emergence. The article concludes by considering the implications this has on how we make sense of healthcare and the positive, social, and relational aspects that might be surfaced in current and future practices.
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BACKGROUND: COVID-19 disrupted access to bereavement support. The objective of this study was to identify the bereavement supports used by Australians during the COVID-19 pandemic, perceived helpfulness of supports used, prevalence and areas of unmet support need, and characteristics of those with unmet support needs. METHODS: A convenience sample of bereaved adults completed an online questionnaire (April 2021-April 2022) about their bereavement experiences including support use and perceived helpfulness, unmet support needs and mental health. Multiple logistic regression was conducted to determine sociodemographic correlates of unmet needs. Open-ended responses were examined using content analysis to determine key themes. RESULTS: 1,878 bereaved Australians completed the questionnaire. Participants were mostly women (94.9%) living in major cities (68%) and reported the death of a parent (45%), with an average age of 55.1 years (SD = 12.2). The five most used supports were family and friends, self-help resources, general practitioners, psychologists, and internet/online community groups. Notably, each was nominated as most helpful and most unhelpful by participants. Two-thirds (66%) reported specific unmet support needs. Those with unmet needs scored lower on mental health measures. Correlates of unmet needs included being of younger age, being a spouse or parent to the deceased; reporting more impacts from public health measures, and not reporting family and friends as supports. The most frequent unmet need was for social support after the death and during lockdown. CONCLUSIONS: This study demonstrates the complexity of bereavement support needs during a pandemic. Specialised grief therapy needs to be more readily available to the minority of grievers who would benefit from it. A clear recommendation for a bereavement support action plan is to bolster the ability of social networks to provide support in times of loss. The fostering of social support in the wake of bereavement is a major gap that needs to be addressed in practice, policy, and research.
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Luto , COVID-19 , Pandemias , Apoio Social , Humanos , COVID-19/epidemiologia , COVID-19/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Transversais , Austrália/epidemiologia , Adulto , Idoso , Inquéritos e Questionários , SARS-CoV-2 , Saúde Mental , População AustralasianaRESUMO
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.
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Diversidade Cultural , Demência , Humanos , Vietnã , Austrália , Educação ContinuadaRESUMO
Interprofessional care obliges different healthcare professions to share decision-making and sometimes, practices. Given established hierarchies, it can be difficult to promote interprofessional care, partly because of the need to reshape professional identities. Despite interest in effective interprofessional care, there is limited research on how professional identity can be mobilised to promote it. A scoping review as well as lexical review of academic publications was conducted to address this void. After searching seven academic databases and screening the identified publications, 22 publications met the inclusion criteria. They collectively reported on 22 interventions, most of which were used in healthcare. The scoping review suggested there is some evidence that professional identities can be mobilised. Yet, of the 22 interventions, only ten explicitly targeted professional identity. The most common intervention was a training or development program, followed by workplace redesign. The need for internal motivation to mobilise professional identity was reported as was the impact of external drivers, like extending the scope of practice. Extending these findings, the lexical review demonstrated that, among the 22 publications, the relationship between professional identity and mobilisation did not feature prominently within the discourse. Furthermore, it seems that geography matters-that is, while all the publications spoke of professional identity, they differed by region on how they did this. Given these findings, concentrated scholarship is needed on the relationship between professional identity and interprofessional care, lest interprofessional care programs have limited, sustained effect. Implications for scholars and practitioners are explicated.
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Atenção à Saúde , Pessoal de Saúde , Humanos , Pessoal de Saúde/educação , Identificação Social , Local de Trabalho , Relações InterprofissionaisRESUMO
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.
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Instituições de Assistência Ambulatorial , Assistência Ambulatorial , Humanos , Consenso , Austrália , New South Wales , Técnica DelphiRESUMO
PROBLEM: Although there is robust evidence for the benefits of midwifery group practice (MGP) caseload care, there are limited opportunities for women to access this model in Australia. There is also limited knowledge on how to sustain these services. BACKGROUND: MGP can benefit childbearing women and babies and improve satisfaction for women and midwives. However, sustainability of the model is challenging. While MGPs are often supported and celebrated, in Australia some services have closed, while others struggle to adequately staff MGPs. AIM: To investigate midwives and managers opinions on the management, culture, and sustainability of MGP. METHODS: A national survey of MGP midwives and managers was distributed (2021 and 2022). Quantitative data were analysed using descriptive statistics, and qualitative data were analysed using content analysis. RESULTS: A total of 579 midwives and 90 managers completed the survey. The findings suggest that many MGPs do not support new graduates and students to work in MGP. Over half (59.8%) the participants (midwives and managers) reported that the women and families were the best aspect about working in MGP, while 44.3% said the effects on midwives' lifestyle and families were the worst aspect. DISCUSSION: The relationship with women remains the major motivator for providing MGP care. However, work-life imbalance is a deterrent, exacerbated by staffing shortages. Staffing might be improved by adequate renumeration, strengthening orientation, and attracting new graduates and students through experience in MGP. CONCLUSIONS: There is a need to attract midwives to MGP and improve work-life balance and sustainability.
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Prática de Grupo , Tocologia , Enfermeiros Obstétricos , Gravidez , Feminino , Humanos , Tocologia/métodos , Estudos Transversais , Austrália , Inquéritos e Questionários , Pesquisa QualitativaRESUMO
Purpose: The purpose of this study is to identify opportunities to improve processes within a paediatric feeding clinic to enhance timely patient access to healthcare through effective and efficient resource use. Design/methodology/approach: The study involved three interrelated methods. First, de-identified feeding clinic data, collected over seven years, were analysed to understand patient appointments. Second, clinician workshops and the swim lane method were used to map feeding clinic processes. Third, root cause analysis was conducted to identify bottlenecks and identify improvement opportunities. Findings: The results revealed three, poorly connected sub-processes within the feeding clinic - namely: the patient triaging and appointment scheduling or allocation process; the clinic reporting process; and the cancellation and rescheduling process. These sub-processes were poorly connected because of inadequate resources, few standardised processes, and limited coordination between the different processes. Consequently, patient appointments were typically delayed, and patient reports were not always completed in a timely manner. Processes within the paediatric feeding clinic could therefore be improved by using digital tools, patient portals and telehealth, online interventions, an automated appointment confirmation system, and/or an automated transcription of each appointment. Originality/value: This is the first published study to apply business process management to a paediatric feeding clinic. By using three methods to clarify opportunities to improve clinic processes, it highlights the potential value of health information technology in this context. This evidence will enable health service managers to ensure that children with feeding difficulties have timely access to appropriate care.
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OBJECTIVE: The objective of this scoping review is to describe models of palliative care for under-served populations in high-income countries, defined as adults of culturally and linguistically diverse communities, low socioeconomic status, and/or residing in rural areas. INTRODUCTION: Models of palliative care are processual, referring to the way palliative care services are delivered as people experience a condition, injury, or event. The aim of these models is to ensure people get the right care, at the right time, by the right team, in the right place. Evidence suggests there is a wide variety of models of palliative care, but what is not known is how these models can vary to meet the needs of under-served populations. INCLUSION CRITERIA: This scoping review will consider articles that focus on models of palliative care for under-served populations, irrespective of sex, age, or primary diagnosis. METHODS: MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), Emcare (Ovid), CINAHL (EBSCOhost), and Scopus will be searched for articles, irrespective of language, published from 2014. Two independent reviewers will screen titles and abstracts, followed by a full-text review of potentially relevant articles. Discrepancies will be reconciled with another reviewer. Two independent reviewers will extract data from included articles using a data extraction tool developed for this review. Results will be tabulated and/or presented diagrammatically, as well as summarized to explicitly address the objective of the review. REVIEW REGISTRATION: Open Science Framework osf.io/x4ky3.
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Renda , Cuidados Paliativos , Adulto , Humanos , Países Desenvolvidos , Literatura de Revisão como AssuntoRESUMO
PROBLEM: Given the current rate of burnout and attrition among nurses and midwives globally, there is a need to understand the effectiveness of supportive strategies to help retain this workforce. BACKGROUND: Clinical supervision can help to ensure that nurses and midwives are supported and have the capacity to cope with their job demands. Yet there are no metasyntheses that provide a collective understanding of their experiences with clinical supervision. AIM: To synthesise the experiences of nurses and midwives who have accessed clinical supervision. METHODS: A metasynthesis was conducted by systematically searching academic databases for relevant publications; assessing their quality using an established checklist; extracting and analysing qualitative content; and synthesising key findings about the experiences of nurses and midwives regarding clinical supervision. FINDINGS: Themes and subthemes were identified from 12 papers, including: optimal logistics; support; safety and confidentiality; improving practice through reflection; and trust in the group. DISCUSSION: For clinicians to feel comfortable discussing their practice and workplace with the facilitator and colleagues, nurses and midwives needed to feel safe during clinical supervision and trust the process and their peers. Despite common difficulties of finding time for the sessions, clinical supervision can enhance collaboration and communication in the workplace. CONCLUSION: Clinical supervision that adheres to group rules can provide professional support within a safe, confidential space. Having trust in peers and facilitators at the sessions can help staff develop confidence, provide personal development and professional sustenance.
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Esgotamento Profissional , Tocologia , Enfermeiras e Enfermeiros , Gravidez , Humanos , Feminino , Preceptoria , Pesquisa Qualitativa , Emoções , Esgotamento Profissional/prevenção & controleRESUMO
BACKGROUND: Despite robust evidence on the benefits of midwifery group practice (MGP), there remains difficulties with implementing and sustaining the model. However, contemporary data on the MGP workforce and how each model has been operationalised are limited. This constrains an understanding of the factors that help or hinder implementation and sustainability of MGP. AIM: To describe the characteristics of Australian MGPs and the factors that help or hinder sustainability. METHODS: A national cross-sectional survey was undertaken in Australia between March 2021 and July 2022, inclusive. Quantitative data were analysed using descriptive analysis while qualitative data were analysed using content analysis. FINDINGS: Of 669 survey responses, 579 were midwives and 90 were managers. The mean years of experience for clinical midwives was eight years, and 47.8% (almost twice the national average) completed a Bachelor of Midwifery (BMid). Half (50.2%) the models provided care for women of all risk. Midwives resigned from MGP because of the MGP work conditions (30%) and how the service was managed or supported (12.7%). Managers resigned from MGP because of role changes, conflict with their manager, and limited support. Almost half (42.6%) of MGP managers also managed other areas, leading to heavy workloads, competing demands, and burnout. CONCLUSION: The BMid appears to be a common educational pathway for MGP midwives, and many MGP services are providing care to women with complexities. Flexible practice agreements, organisational support and appropriate workloads are vital for recruitment, retention, and sustainability of MGP.
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Prática de Grupo , Tocologia , Enfermeiros Obstétricos , Gravidez , Feminino , Humanos , Austrália , Estudos Transversais , Inquéritos e Questionários , Recursos HumanosRESUMO
BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.
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Luto , COVID-19 , Adulto , Humanos , Cuidados Paliativos , Pandemias , Estudos Transversais , Austrália/epidemiologia , Pesar , Família , Hospitais , MorteRESUMO
BACKGROUND: Hospitals are insufficiently resourced to appropriately support young people who present with suicidal crises. Digital mental health innovations have the potential to provide cost-effective models of care to address this service gap and improve care experiences for young people. However, little is currently known about whether digital innovations are feasible to integrate into complex hospital settings or how they should be introduced for sustainability. OBJECTIVE: This qualitative study explored the potential benefits, barriers, and collective action required for integrating digital therapeutics for the management of suicidal distress in youth into routine hospital practice. Addressing these knowledge gaps is a critical first step in designing digital innovations and implementation strategies that enable uptake and integration. METHODS: We conducted a series of semistructured interviews with young people who had presented to an Australian hospital for a suicide crisis in the previous 12 months and hospital staff who interacted with these young people. Participants were recruited from the community nationally via social media advertisements on the web. Interviews were conducted individually, and participants were reimbursed for their time. Using the Normalization Process Theory framework, we developed an interview guide to clarify the processes and conditions that influence whether and how an innovation becomes part of routine practice in complex health systems. RESULTS: Analysis of 29 interviews (n=17, 59% young people and n=12, 41% hospital staff) yielded 4 themes that were mapped onto 3 Normalization Process Theory constructs related to coherence building, cognitive participation, and collective action. Overall, digital innovations were seen as a beneficial complement to but not a substitute for in-person clinical services. The timing of delivery was important, with the agreement that digital therapeutics could be provided to patients while they were waiting to be assessed or shortly before discharge. Staff training to increase digital literacy was considered key to implementation, but there were mixed views on the level of staff assistance needed to support young people in engaging with digital innovations. Improving access to technological devices and internet connectivity, increasing staff motivation to facilitate the use of the digital therapeutic, and allowing patients autonomy over the use of the digital therapeutic were identified as other factors critical to integration. CONCLUSIONS: Integrating digital innovations into current models of patient care for young people presenting to hospital in acute suicide crises is challenging because of several existing resource, logistical, and technical barriers. Scoping the appropriateness of new innovations with relevant key stakeholders as early as possible in the development process should be prioritized as the best opportunity to preemptively identify and address barriers to implementation.
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BACKGROUND: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions. OBJECTIVE: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions. METHODS: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline. RESULTS: The project has been funded by the Canadian Institutes of Health Research. CONCLUSIONS: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve the consistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50463.
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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.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Comunicação , Documentação , NáuseaRESUMO
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.
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Cuidadores , Motivação , Humanos , Idoso , Pesquisa Qualitativa , Empatia , Inquéritos e QuestionáriosRESUMO
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.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Pesquisa Qualitativa , Atenção à Saúde , Antropologia Cultural , CuidadoresRESUMO
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.
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Cuidadores , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidados Paliativos , Ambulâncias , Pesquisa QualitativaRESUMO
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.
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Demência , Segurança do Paciente , Humanos , Idoso , Antropologia Cultural , Hospitais , AustráliaRESUMO
The COVID-19 pandemic greatly impacted research. In this article, we explore the opportunities and challenges presented by the pandemic to a group of researchers using video-reflexive ethnography (VRE) - a methodology used to understand practices, grounded in: exnovation, collaboration, reflexivity, and care. To understand how the pandemic impacted researchers using VRE, we facilitated two focus groups with 12 members of the International Association of Video-Reflexive Ethnographers. The findings suggest the pandemic exacerbated existing methodological challenges, yet also provided an opportunity reflect on our own practices as researchers, namely: accessing sites, building relationships, facilitating reflexive sessions, and cultivating care. Due to public health measures, some researchers used insiders to access sites. While these insiders shouldered additional burdens, this shift might have empowered participants, increased the salience of the project, and enabled access to rural sites. The inability to access sites and reliance on insiders also impeded researcher ability to build relationships with participants and generate the ethnographic insights often associated with prolonged engagement at a site. In reflexive sessions, researchers had to learn how to manage the technological, logistical, and methodological challenges associated with either themselves or participants being remote. Finally, participants noted that while the transition to more digital methodologies might have increased project reach, there needed to be a mindfulness around cultivating practices of care in the digital world to ensure psychological safety and protect participants data. These findings reflect the opportunities and challenges a group of researchers using VRE had during the pandemic and can be used to stimulate future methodologic discussions.