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Introduction: Integrated care has been posited as a potential solution to the global burden of youth mental health (YMH), but there is limited evidence on how best to design, staff, and evaluate different integrated care models. Our review aimed to consolidate the evidence on integrated models of mental healthcare for young people, to identify the core components of integration, and create a framework that can be used to analyse levels of YMH integration. Methods: We conducted a systematic review of literature across PubMed, SCOPUS, and PsycINFO databases and the grey literature We performed a narrative synthesis extracting core components of integrated YMH care. Results: Inductive themes from the literature described core components of integrated care. These themes were mapped into a novel framework combining the World Health Organisation health system building blocks and six intensity levels of integrated care to consider how best to implement and sustain integrated care within the YMH system. Discussion: The Youth Integration Project framework can form a basis for the development, implementation and evaluation of well-articulated models of youth integrated mental health pathways, assisting services identify what operational changes are needed to best implement and sustain integrated care.
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BACKGROUND: Asthma is the leading source of unscheduled hospitalisation in Australian children, with a high burden placed upon children, their parents/families, and the healthcare system. In Australia, there are widening disparities in paediatric asthma care including inequitable access to comprehensive ongoing and planned asthma care for children. METHODS: The Asthma Care from Home Project is a comprehensive virtually enabled asthma model of care that aims to a. supports families, communities and healthcare providers, b. flexible and locally acceptable, and c. allow for adoption of innovations such as digital technologies so that asthma care can be provided "from home", reduce potentially preventable asthma hospitalisation, and ensure satisfaction at a patient, family, and healthcare provider level. The model of care includes standardisation of discharge care through provision of an asthma discharge resource pack containing individual asthma action plan, follow-up letters for the child's general practitioner (GP) and school/child care, and access to online asthma educational sessions and resource; post-discharge care coordination through text message reminders for families for regular GP review, email correspondence with their child's GP and school/childcare; and virtual home visits to discuss home environmental triggers, provide personalised asthma education and respond to parental concerns relating to their child's asthma. This study is comprised of three components: 1) a quasi-experimental pre/post impact evaluation assessing the impact of the model on healthcare utilisation and asthma control measures; 2) a mixed-methods implementation evaluation to understand how and why our intervention was effective or ineffective in producing systems change; 3) an economic evaluation to assess the cost-effectiveness of the proposed model of care from a family and health services perspective. DISCUSSION: This study aims to improve access to asthma care for children in rural and remote areas. Implementation evaluation and economic evaluation will provide insights into the sustainability and scalability of the asthma model of care.
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Asma , População Rural , Asma/terapia , Humanos , Criança , New South Wales , Pré-Escolar , Feminino , Masculino , Telemedicina , AdolescenteRESUMO
OBJECTIVES: To evaluate the effectiveness of integrated models of mental healthcare in enhancing clinical outcomes, quality of life, satisfaction with care and health service delivery outcomes in young people aged 12-25 years. A secondary objective was to identify common components of integrated mental health interventions. METHODS: A systematic review and meta-analysis of studies published 2001-2023 that assessed clinical or health service use outcomes of integrated care, relative to treatment as usual, for any mental health condition in 12-25 years old accessing community-based care. RESULTS: Of 11,444 titles identified, 15 studies met inclusion criteria and 6 studies were entered in the meta-analysis. Pooled effect size found integrated care was associated with a greater reduction in depressive symptoms relative to treatment as usual at 4-6 months (standardised mean difference = -0.260, 95% confidence interval = [-0.39, -0.13], p = 0.001). Of the seven studies reporting access or engagement, all reported higher rates of both in the intervention arm. The most frequent components of integration were use of a multidisciplinary team (13/15 studies), shared treatment planning (11/15) and workforce training in the model (14/15). CONCLUSIONS: Integrated models of mental healthcare are associated with a small, but significant, increase in effectiveness for depressive symptoms relative to treatment as usual. Given integrated care may increase access and engagement, future research should focus on assessing the impact of integrated care in a wider range of settings and outcomes, including clinical and functional recovery, satisfaction with care and system-level outcomes such as cost-effectiveness.
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Prestação Integrada de Cuidados de Saúde , Humanos , Adolescente , Adulto Jovem , Criança , Serviços de Saúde Mental , Adulto , Transtornos Mentais/terapiaRESUMO
The Strengthening Care for Children (SC4C) is a general practitioner (GP)-paediatrician integrated model of care that consists of co-consulting sessions and case discussions in the general practice setting, with email and telephone support provided by paediatricians to GPs during weekdays. This model was implemented in 21 general practices in Australia (11 Victoria and 10 New South Wales). Our study aimed to identify the factors moderating the implementation of SC4C from the perspectives of GPs, general practice personnel, paediatricians and families. We conducted a qualitative study as part of the mixed-methods implementation evaluation of the SC4C trial. We collected data through virtual and in-person focus groups at the general practices and phone, virtual and in-person interviews. Data was analysed using an iterative hybrid inductive-deductive thematic analysis. Twenty-one focus groups and thirty-seven interviews were conducted. Overall, participants found SC4C acceptable and suitable for general practices, with GPs willing to learn and expand their paediatric care role. GPs cited improved confidence and knowledge due to the model. Paediatricians reported an enhanced understanding of the general practice context and the strain under which GPs work. GPs and paediatricians reported that this model allowed them to build trust-based relationships with a common goal of improving care for children. Additionally, they felt some aspects, including the lack of remuneration and the work and effort required to deliver the model, need to be considered for the long-term success of the model. Families expressed their satisfaction with the shared knowledge and quality of care jointly delivered by GPs and paediatricians and highlighted that this model of care provides easy access to specialty services without out-of-pocket costs. Future research should focus on finding strategies to ensure the long-term Implementation of this model of care with a particular focus on the individual stressors in general practices.
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Medicina Geral , Clínicos Gerais , Humanos , Clínicos Gerais/psicologia , Medicina Geral/organização & administração , Criança , Pediatras/psicologia , Masculino , Feminino , Austrália , Grupos Focais , Pesquisa Qualitativa , Pediatria , Prestação Integrada de Cuidados de SaúdeRESUMO
BACKGROUND: Children with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care. METHODS: In April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank's narrative approach. RESULTS: Through analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed 'equilibrium' was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families. CONCLUSIONS: Our research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.
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Cuidadores , Entrevistas como Assunto , Pais , Pesquisa Qualitativa , Humanos , Criança , Feminino , Masculino , Pais/psicologia , Cuidadores/psicologia , Narração , Adulto , Pessoal de Saúde/psicologia , Pré-Escolar , AdolescenteRESUMO
INTRODUCTION: One in every two cases of caries in deciduous teeth occurs in low- and middle-income countries (LMICs). The aim of the World Health Organisation's (WHO) Healthy Schools Program is to improve the oral health of children. This study explored perceptions of implementation of the Ugandan oral health schools' program in Gulu district, northern Uganda. METHODS: Semi-structured interviews were conducted with a purposive sample of 19 participants including health and education officials, community leaders, policy makers, teachers, and parents. All interviews were transcribed verbatim and analysed thematically. RESULTS: Our study identified three themes: (1) components of oral health promotion, (2) implementation challenges of oral health promotion, and (3) development of an oral health policy. The components of oral health promotion in schools included engagement of health workers, the community, companies, skills-based education, and oral health services. Participants were concerned about insufficient funding, unsatisfactory skills-based education, and inadequate dental screening. Participants reported that there was an urgent need to develop oral health policy to guide implementation of the program at scale. CONCLUSIONS: Schools provided oral health promotion that aligned with existing features of the WHO's health-promoting school framework. Implementation of this strategy could be enhanced with increased resources, adequate oral health education, and explicit development of oral health policy.
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Promoção da Saúde , Saúde Bucal , Criança , Humanos , Uganda , Instituições Acadêmicas , Pais , Pessoal AdministrativoRESUMO
BACKGROUND: The health and well-being of children in the first 2000 days has a lasting effect on educational achievement and long-term chronic disease in later life. However, the lack of integration between high-quality data, analytic capacity and timely health improvement initiatives means practitioners, service leaders and policymakers cannot use data effectively to plan and evaluate early intervention services and monitor high-level health outcomes. OBJECTIVE: Our exploratory study aimed to develop an in-depth understanding of the system and clinical requirements of a state-wide paediatric learning health system (LHS) that uses routinely collected data to not only identify where the inequities and variation in care are, but also to also inform service development and delivery where it is needed most. METHOD: Our approach included reviewing exemplars of how administrative data are used in Australia; consulting with clinical, policy and data stakeholders to determine their needs for a child health LHS; mapping the existing data points collected across the first 2000 days of a child's life and geospatially locating patterns of key indicators for child health needs. RESULTS: Our study identified the indicators that are available and accessible to inform service delivery and demonstrated the potential of using routinely collected administrative data to identify the gap between health needs and service availability. CONCLUSION: We recommend improving data collection, accessibility and integration to establish a state-wide LHS, whereby there is a streamlined process for data cleaning, analysis and visualisation to help identify populations in need in a timely manner.
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BACKGROUND: Depression is common during adolescence and is associated with adverse educational, employment, and health outcomes in later life. Digital programs are increasingly being implemented in schools to improve and protect adolescent mental health. Although digital depression prevention programs can be effective, there is limited knowledge about how contextual factors influence real-world delivery at scale in schools. OBJECTIVE: The purpose of this study was to examine the contextual factors that influence the implementation of the Future Proofing Program (FPP) from the perspectives of school staff. The FPP is a 2-arm hybrid type 1 effectiveness-implementation trial evaluating whether depression can be prevented at scale in schools, using an evidence-based smartphone app delivered universally to year 8 students (13-14 years of age). METHODS: Qualitative interviews were conducted with 23 staff from 20 schools in New South Wales, Australia, who assisted with the implementation of the FPP. The interviews were guided by our theory-driven logic model. Reflexive thematic analysis, using both deductive and inductive coding, was used to analyze responses. RESULTS: Staff perceived the FPP as a novel ("innovative approach") and appropriate way to address an unmet need within schools ("right place at the right time"). Active leadership and counselor involvement were critical for planning and engaging; teamwork, communication, and staff capacity were critical for execution ("ways of working within schools"). Low student engagement and staffing availability were identified as barriers for future adoption and implementation by schools ("reflecting on past experiences"). CONCLUSIONS: Four superordinate themes pertaining to the program, implementation processes, and implementation barriers were identified from qualitative responses by school staff. On the basis of our findings, we proposed a select set of recommendations for future implementation of digital prevention programs delivered at scale in schools. These recommendations were designed to facilitate an organizational change and help staff to implement digital mental health programs within their schools. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2020-042133.
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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: Arts-based methodologies and methods (ABM) can elicit rich and meaningful data with seldom-heard groups and empower participants in research. Young people with complex psychosocial needs could be better engaged in research using arts-based approaches to overcome communication and literacy issues as well as distrust of those with power, including researchers. A critical review of the use and impact of ABM among this population is timely. The purpose of this review is to synthesize and examine the experience and use of ABM with young people with complex psychosocial needs. METHODS: A systematic narrative literature review was conducted with a search of the literature from 2009 to 2021. All abstracts were reviewed independently by two authors and full papers were screened for eligibility against inclusion and exclusion criteria. Data synthesis focused on a descriptive numerical summary and a thematic analysis focused on key patterns across papers relating to the review objectives. RESULTS AND DISCUSSION: A total of 25 papers were included. The most common issues of focus were mental health (n = 10) and homelessness (n = 11) and methods using Photovoice (n = 12) and Body Mapping (n = 5). Individual interview data (n = 20) were the most commonly analysed, followed by created works (n = 19). Less than half the studies involved young people in the interpretation of the data collected. Knowledge translation was not described in almost half the studies, with public exhibits (n = 7) and forums with service providers (n = 4) being the most common activities. Key themes across the studies were valued over traditional methods in eliciting data, ABM as an approach to engage these young people in research and the impact of the use of ABM on participants and on key stakeholders through knowledge translation. CONCLUSIONS: The growing field of ABM presents opportunities to enhance research with young people with complex psychosocial needs by promoting meaningful exploration of experiences, engaging participants in research and strengthening knowledge translation. The involvement of young people in the interpretation of data and ensuring that knowledge translation occurs are key areas for future attention. PATIENT OR PUBLIC CONTRIBUTION: The findings of this review will inform future research to improve the engagement of young people with complex psychosocial needs in research and promote power sharing between researchers and research participants.
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Comunicação , Narração , Humanos , AdolescenteRESUMO
INTRODUCTION: Implementation evaluations provide insight into how interventions are delivered across varying contexts and why interventions work in some contexts and not in others. This manuscript outlines a detailed protocol of an implementation evaluation embedded in a stepped-wedge cluster randomised controlled trial of a model of care, Strengthening Care for Children (SC4C), that integrates paediatric care in general practice. The purpose of this manuscript is to describe the pragmatic methods that will be used to capture implementation evaluation process and outcome data within this trial. METHODS AND ANALYSIS: Our implementation evaluation will use a mixed methods design, with data collected in the intervention arm of the SC4C trial guided by a logic model developed using the Consolidated Framework for Implementation Research (CFIR) and Proctor and colleague's taxonomy of implementation outcomes. Data collection will be via questionnaires and semistructured interviews with general practitioners, paediatricians, general practice administrative staff and children and families. Each of the 21 general practices recruited into the study will be described in terms of staffing, patient throughput and location, in addition to the nuanced inner and outer contexts, use of the intervention and its acceptability. We will quantify implementation effectiveness in each general practice clinic using the CFIR validated scoring system. Importantly, we have embedded data collection post intervention to enable assessment of the sustainable adoption of the intervention. An inductive approach to the analysis of qualitative data will identify additional emerging themes that may not be covered by the formal frameworks underpinning our analysis. ETHICS AND DISSEMINATION: Ethical approval was granted by the Royal Children's Hospital Ethics Committee in August 2020 (HREC: 65955). Results will be submitted for publication in peer-reviewed journals and presented at relevant conferences. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry 12620001299998 on 1 December 2020.
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Medicina Geral , Clínicos Gerais , Criança , Humanos , Atenção Primária à Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Australia's current healthcare system for children is neither sustainable nor equitable. As children (0-4 years) comprise the largest proportion of all primary care-type emergency department presentations, general practitioners (GPs) report feeling undervalued as an integral member of a child's care, and lacking in opportunities for support and training in paediatric conditions. This Strengthening Care for Children (SC4C) randomised trial aims to evaluate a novel, integrated GP-paediatrician model of care, that, if effective, will improve GP quality of care, reduce burden to hospital services and ensure children receive the right care, at the right time, closer to home. METHODS AND ANALYSIS: SC4C is a stepped wedge cluster randomised controlled trial (RCT) of 22 general practice clinics in Victoria and New South Wales, Australia. General practice clinics will provide control period data before being exposed to the 12-month intervention which will be rolled out sequentially each month (one clinic per state) until all 22 clinics receive the intervention. The intervention comprises weekly GP-paediatrician co-consultation sessions; monthly case discussions; and phone and email paediatrician support, focusing on common paediatric conditions. The primary outcome of the trial is to assess the impact of the intervention as measured by the proportion of children's (0-<18 years) GP appointments that result in a hospital referral, compared with the control period. Secondary outcomes include GP quality of care; GP experience and confidence in providing paediatric care; family trust in and preference for GP care; and the sustainability of the intervention. An implementation evaluation will assess the model to inform acceptability, adaptability, scalability and sustainability, while a health economic evaluation will measure the cost-effectiveness of the intervention. ETHICS AND DISSEMINATION: Human research ethics committee (HREC) approval was granted by The Royal Children's Hospital Ethics Committee in August 2020 (Project ID: 65955) and site-specific HRECs. The investigators (including Primary Health Network partners) will communicate trial results to stakeholders and participating GPs and general practice clinics via presentations and publications. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry 12620001299998.
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Clínicos Gerais , Criança , Análise Custo-Benefício , Humanos , Pediatras , Atenção Primária à Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto , VitóriaRESUMO
INTRODUCTION: Continuity of child and family healthcare is vital for optimal child health and development for developmentally vulnerable children. Migrant and refugee communities are often at-risk of poor health outcomes, facing barriers to health service attendance including cultural, language, limited health literacy, discrimination and unmet psychosocial needs. 'Integrated health-social care hubs' are physical hubs where health and social services are co-located, with shared referral pathways and care navigation. AIM: Our study will evaluate the impact, implementation and cost-benefit of the First 2000 Days Care Connect (FDCC) integrated hub model for pregnant migrant and refugee women and their infants. MATERIALS AND METHODS: This study has three components. Component 1 is a non-randomised controlled trial to compare the FDCC model of care with usual care. This trial will allocate eligible women to intervention and control groups based on their proximity to the Hub sites. Outcome measures include: the proportion of children attending child and family health (CFH) nurse services and completing their CFH checks to 12 months of age; improved surveillance of growth and development in children up to 12 months, post partum; improved breastfeeding rates; reduced emergency department presentations; and improved maternal well-being. These will be measured using linked medical record data and surveys. Component 2 will involve a mixed-method implementation evaluation to clarify how and why FDCC was implemented within the sites to inform future roll-out. Component 3 is a within-trial economic evaluation from a healthcare perspective to assess the cost-effectiveness of the Hubs relative to usual care and the implementation costs if Hubs were scaled and replicated. ETHICS AND DISSEMINATION: Ethical approval was granted by the South Eastern Sydney Local Health District Human Research Ethics Committee in July 2021 (Project ID: 020/ETH03295). Results will be submitted for publication in peer-reviewed journals and presented at relevant conferences. TRIAL REGISTRATION NUMBER: ACTRN12621001088831.
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Serviços de Saúde da Criança , Refugiados , Migrantes , Criança , Análise Custo-Benefício , Saúde da Família , Feminino , Humanos , Lactente , GravidezRESUMO
AIM: To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff. DESIGN: Interpretive qualitative study. METHODS: Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care. RESULTS: Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID-19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. CONCLUSION: Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/family and the hospital systems and processes. IMPACT: The enhanced model offers a specialized framework for clinical staff and health managers to optimize the delivery of safe care for children and young people with intellectual disability in hospital.
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COVID-19 , Deficiência Intelectual , Riso , Enfermeiras e Enfermeiros , Adolescente , Criança , Hospitais Pediátricos , Humanos , Pacientes Internados , PandemiasRESUMO
BACKGROUND: Coronavirus disease 2019 (COVID-19) has resulted in over 2 million deaths globally. The experience in Australia presents an opportunity to study contrasting responses to the COVID-19 health system shock. We adapted the Hanefeld et al framework for health systems shocks to create the COVID-19 System Shock Framework (CSSF). This framework enabled us to assess innovations and changes created through COVID-19 at the Sydney Children's Hospitals Network (SCHN), the largest provider of children's health services in the Southern hemisphere. METHODS: We used ethnographic methods, guided by the CSSF, to map innovations and initiatives implemented across SCHN during the pandemic. An embedded field researcher shadowed members of the emergency operations centre (EOC) for nine months. We also reviewed clinic and policy documents pertinent to SCHN's response to COVID-19 and conducted interviews and focus groups with stakeholders, including clinical directors, project managers, frontline clinicians, and other personnel involved in implementing innovations across SCHN. RESULTS: The CSSF captured SCHN's complex response to the pandemic. Responses included a COVID-19 assessment clinic, inpatient and infectious disease management services, redeploying and managing a workforce working from home, cohesive communication initiatives, and remote delivery of care, all enabled by a dedicated COVID-19 fund. The health system values that shaped SCHN's response to the pandemic included principles of equity of healthcare delivery, holistic and integrated models of care, and supporting workforce wellbeing. SCHN's resilience was enabled by innovation fostered through a non-hierarchical governance structure and responsiveness to emerging challenges balanced with a singular vision. CONCLUSION: Using the CSSF, we found that SCHN's ability to innovate was key to ensuring its resilience during the pandemic.
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COVID-19 , Criança , Humanos , COVID-19/epidemiologia , Pandemias , SARS-CoV-2 , Atenção à Saúde , Recursos HumanosRESUMO
Multi-site research studies are essential if we are to conduct national research across all Australian jurisdictions. There is widespread agreement among clinicians and researchers that obtaining essential approvals to conduct multi-site research studies in Australia can be complex, bureaucratic and time consuming. Although there is inherent value in the review process, resources and months of valuable research time are often expended long before the study has begun. Using our recent experience for a multi-site, longitudinal paediatric cohort study of children and adolescents who were detained in offshore immigration detention on Nauru, we describe the process of navigating the ethics and governance approval systems. We identify tips for researchers and clinicians conducting multi-site studies, including early consultation with ethics and governance committees, using their recommended templates, anticipating time delays, and commencing time consuming processes as early as permissible. Our recommendations at the systemic level include streamlined and integrated ethics and governance review processes for all Australian jurisdictions, with co-ordinated requests for further information, a standardised approach across all Research Governance Offices, a rapid system for addressing amendments and individualised study support and consultations. Above all, a nationally agreed framework whereby ethics and governance committees across jurisdictions communicate with each other, use the same electronic platform and present a unified process whilst protecting the welfare, rights, dignity and safety of research participants is required. The complexity of the current ethics and governance processes may inadvertently and unintentionally be a barrier to conducting ethical research.
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Comitês de Ética em Pesquisa , Pesquisadores , Adolescente , Austrália , Criança , Estudos de Coortes , HumanosRESUMO
BACKGROUND: The first wave of the COVID-19 pandemic hit New South Wales (NSW) Australia in early 2020, followed by a sharp state-wide lockdown from mid-March to mid-May. After the lockdown, there had been a low level of community transmission of COVID-19 over a year. Such pandemic experiences provide unique opportunity to understand the impact of the pandemic on paediatric health service use as countries emerge from the pandemic. METHODS: We examined the difference between the observed and the predicted numbers of inpatient admissions and emergency department (ED) attendances, respectively, related to chronic, acute infectious and injury conditions, for each month during the COVID-19 period (January 2020-February 2021), based on the numbers from 2016 to 2019, using records from two major paediatric hospitals in NSW. All analyses were conducted using autoregressive error models and were stratified by patient age, sex and socioeconomic status. FINDINGS: Health service use was significantly lower than predicted for admissions and/or ED attendances related to chronic conditions, acute infections, and injury during the lockdown in 2020. Change in health service use varied by chronic conditions, from the largest decrease for respiratory conditions (40-78%) to non-significant change for cancer and mental health disorders. After the lockdown, health service use for most health conditions returned to pre-COVID-19 predicted levels. However, for mental health disorders, increased health service use persisted from June 2020 up to February 2021 by 30-55%, with higher increase among girls aged 12-17 years and those from socioeconomically advantaged areas. There was persistently lower health service use for acute infections and increased health service use for injuries. Differences by socio-demographic factors were noted for mental health disorders and injuries. INTERPRETATION: The immediate return to pre-COVID-19 levels for most chronic conditions after the first lockdown in NSW highlights the healthcare needs for children affected by chronic conditions. Persistently lower health service use for acute infections is likely attributable to the decreased social contact. Sustained and targeted mental health support is essential to address the potentially increased demand for services among children during and beyond the pandemic. FUNDING: Financial Markets Foundation for Children Chair (RL, NN), NHMRC Investigator Grant (APP1197940) (NN), NHMRC Career Development fellowship (GNT1158954) (SW).
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Early warning of infection is critical to reduce the risk of deterioration and mortality, especially in neutropenic patients following hematopoietic stem cell transplantation (HCT). Given that heart rate variability (HRV) is a sensitive and early marker for infection, and that serum inflammatory biomarkers can have high specificity for infection, we hypothesized their combination may be useful for accurate early warning of infection. In this study, we developed and evaluated a composite predictive model using continuous HRV with daily serum biomarker measurements to provide risk stratification of future deterioration in HCT recipients. A total of 116 ambulatory outpatients about to undergo HCT consented to collection of prospective demographic, clinical (daily vital signs), HRV (continuous electrocardiography [ECG] monitoring, laboratory [daily serum samples frozen at -80 °C]), and infection outcome variables (defined as the time of escalation of antibiotics), all from 24 hours pre-HCT to the onset of infection or 14 days post-HCT. Indications for antibiotic escalation were adjudicated as "true infection" or not by 2 blinded HCT clinicians. A composite time series of 8 HRV metrics was created for each patient, and the probability of deterioration within the next 72 hours was estimated using logistic regression modeling of composite HRV and serum biomarkers using a rule-based naïve Bayes model if the HRV-based probability exceeded a median threshold. Thirty-five patients (30%) withdrew within <24 hours owing to intolerability of ECG monitoring, leaving 81 patients, of whom 48 (59%) had antibiotic escalation adjudicated as true infection. The combined HRV and biomarker (TNF-α, IL-6, and IL-7) predictive model began increasing at ~48 hours on average before the diagnosis of infection, could distinguish between high risk of impending infection (>90% incidence of subsequent infection within 72 hours), average risk (~50%), and low risk (<10%), with an area under the receiver operating characteristic curve of 0.87. However, given that prophylactic predictive ECG monitoring and daily serum collection proved challenging for many patients, further refinement in measurement is necessary for further study.
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Transplante de Células-Tronco Hematopoéticas , Antibacterianos , Teorema de Bayes , Biomarcadores , Frequência Cardíaca/fisiologia , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Estudos ProspectivosRESUMO
This editorial to the Special Issue on Qualitative Inquiry in Mental Health Research with Young People provides an overview of the importance of qualitative inquiry to the field of child and youth mental health. The issue highlights research using qualitative methods to depict the lived experiences and contribution of young people in areas that reflect important mental health concerns, ranging from anxiety, non-suicidal self-injury, positive resilience in young people in times of crisis, and drug and alcohol treatment.
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Serviços de Saúde Mental , Saúde Mental , Adolescente , Transtornos de Ansiedade , Criança , Família , Humanos , Pesquisa QualitativaRESUMO
The involvement of young people in the planning of research continues to be rare, particularly for young people from culturally and linguistically diverse communities. This paper describes our experience in establishing a Youth Research Advisory Group (YRAG) in South West Sydney (SWS), including barriers and successful strategies. One hundred and fifteen students between school Years 7 and 12 (ages 11-18) took part in at least one of five sessions between 2019 and 2021. In total, we carried out 26 YRAG sessions, with between five and 30 students in each. Sessions focused on mapping the health priorities of the participants and co-developing research project proposals related to their health priorities. Our work with students revealed that their main areas of concern were mental health and stress. This led to material changes in our research strategy, to include "Mental Health" as a new research stream and co-develop new mental health-related projects with the students. Important strategies that enabled our research included maintaining flexibility to work seamlessly with organisational and individual preferences, and ensuring our processes were directed by the schools and-most importantly-the students themselves. Strategies such as maintaining an informal context, responding rapidly to student preference, and regularly renegotiating access enabled us to engage with the students to deepen our understanding of their experiences.