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1.
Child Abuse Negl ; : 106849, 2024 May 20.
Article in English | MEDLINE | ID: mdl-38772756

ABSTRACT

BACKGROUND: Sibling sexual behaviour (SSB) is an existing, but poorly defined, area of professional practice and an emerging research area. Much of the research conversations are focused on defining the issue and thinking about the treatment and management of people affected by it. However, in line with other forms of sexual abuse, focus should also be on how SSB can be prevented from happening, alongside the prevention of repeat behaviours. OBJECTIVE: In this paper the emerging debates around SSB prevention, what exists, and how it should develop is discussed. METHODS: The recently developed sibling sexual behaviour mapping tool (SSB-MT) is discussed along with the socio-ecological model and a merged model, the sibling sexual behaviour-socio-ecological mapping tool (SSB-SEMT). RESULTS: The alignment of SSB to existing EpiCrim frameworks. CONCLUSIONS: The prevention of SSB fits within the broader Child Sexual Abuse frameworks and that the sibling sexual behaviour-socio-ecological mapping tool (SSB-SEMT) can be used to develop and introduce prevention interventions across the four prevention stages.

2.
Adv Mater ; : e2401346, 2024 Feb 28.
Article in English | MEDLINE | ID: mdl-38416605

ABSTRACT

Fluorescent organic nanoparticles (NPs) with exceptional brightness hold significant promise for demanding fluorescence bioimaging applications. Although considerable efforts are invested in developing novel organic dyes with enhanced performance, augmenting the brightness of conventional fluorophores is still one of the biggest challenges to overcome. This study presents a supramolecular strategy for constructing ultrabright fluorescent nanoparticles in aqueous media (referred to as "Supra-fluorophores") derived from conventional fluorophores. To achieve this, this course has employed a cylindrical nanoparticle with a hydrophobic microdomain, assembled by a cyclic peptide-diblock copolymer conjugate in water, as a supramolecular scaffold. The noncovalent dispersion of fluorophore moieties within the hydrophobic microdomain of the scaffold effectively mitigates the undesired aggregation-caused quenching and fluorescence quenching by water, resulting in fluorescent NPs with high brightness. This strategy is applicable to a broad spectrum of fluorophore families, covering polyaromatic hydrocarbons, coumarins, boron-dipyrromethenes, cyanines, xanthenes, and squaraines. The resulting fluorescent NPs demonstrate high fluorescence quantum yield (>30%) and brightness per volume (as high as 12 060 m-1 cm-1 nm-3). Moreover, high-performance NPs with emission in the NIR region are constructed, showcasing up to 20-fold increase in both brightness and photostability. This Supra-fluorophore strategy offers a versatile and effective method for transforming existing fluorophores into ultrabright fluorescent NPs in aqueous environments, for applications such as bioimaging.

3.
Curr Psychiatry Rep ; 26(3): 37-44, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38345735

ABSTRACT

PURPOSE OF REVIEW: This paper reviews recent research into sibling sexual behaviour (SSB). This is an emerging professional and community issue that binds together a limited evidence base across research, practice and policy in psychology, criminology, politics, social work and policy studies. The review will demonstrate that a multi-disciplinary, life course, family system approach is the most effective way of starting to develop interventions to prevent and respond to this issue. RECENT FINDINGS: SSB has previously been researched as a form of intrafamilial abuse or sibling incest. As a result of this SSB is poorly and inconsistently defined as a concept, meaning that research, practice and policy are sometimes at odds with each other and need to pull together to develop a cohesive framing of the issue. This means that a lot of older research needs to be contextualised in new emerging frames of thinking and ways of working. Current research emphasises the importance of understanding the role of the family system in creating conditions where SSB can occur and its central role in preventing and stopping it from occurring. The research also stresses the importance of professionals understanding the family context of SSB and has the confidence to identify and work proactively with families in a multi-agency and cross-disciplinary way. The prevention of, and response to, SSB requires a multi-level, multi-disciplinary approach. Successful prevention of and response to SSB are as much about the family system as it is about the attitudes, behaviours and experiences of the siblings impacted by the abuse.


Subject(s)
Mental Disorders , Siblings , Humans , Sexual Behavior , Policy
5.
J Control Release ; 367: 687-696, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38262487

ABSTRACT

High aspect-ratio nanomaterials have recently emerged as promising drug delivery vehicles due to evidence of strong cellular association and prolonged in vivo circulation times. Cyclic peptide - polymer conjugate nanotubes are excellent candidates due to their elongated morphology, their supramolecular composition and high degree of pliability due to the versatility in manipulating amino acid sequence and polymer type. In this work, we explore the use of a nanotube structure on which a potent anti-cancer drug, camptothecin, is attached alongside hydrophilic or amphiphilic RAFT polymers, which shield the cargo. We show that subtle modifications to the cleavable linker type and polymer architecture have a dramatic influence over the rate of drug release in biological conditions. In vitro studies revealed that multiple cancer cell lines in 2D and 3D models responded effectively to the nanotube treatment, and analogous fluorescently labelled materials revealed key mechanistic information regarding the degree of cellular uptake and intracellular fate. Importantly, the ability to instruct specific drug release profiles indicates a potential for these nanomaterials as vectors which can provide sustained drug concentrations for a maximal therapeutic effect.


Subject(s)
Antineoplastic Agents , Nanotubes, Peptide , Nanotubes , Neoplasms , Humans , Polymers/chemistry , Peptides, Cyclic/chemistry , Drug Delivery Systems , Nanotubes/chemistry , Drug Liberation
6.
Ann Neurol ; 95(4): 754-759, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38113311

ABSTRACT

OBJECTIVE: De novo mutations of the voltage-gated sodium channel gene SCN8A cause developmental and epileptic encephalopathy (DEE). Most pathogenic variants result in gain-of-function changes in activity of the sodium channel Nav1.6, poorly controlled seizures, and significant comorbidities. In previous work, an antisense oligonucleotide (ASO) reduced Scn8a transcripts and increased lifespan after neonatal administration to a mouse model. Here, we tested long-term ASO treatment initiated after seizure onset, as required for clinical application. METHODS: ASO treatment was initiated after observation of a convulsive seizure and repeated at 4 to 6 week intervals for 1 year. We also tested the long-term efficacy of an AAV10-short hairpin RNA (shRNA) virus administered on P1. RESULTS: Repeated treatment with the Scn8a ASO initiated after seizure onset provided long-term survival and reduced seizure frequency during a 12 month observation period. A single treatment with viral shRNA was also protective during 12 months of observation. INTERPRETATION: Downregulation of Scn8a expression that is initiated after the onset of seizures is effective for long-term treatment in a model of SCN8A-DEE. Repeated ASO administration or a single dose of viral shRNA prevented seizures and extended survival through 12 months of observation. ANN NEUROL 2024;95:754-759.


Subject(s)
Epilepsy , Animals , Mice , Disease Models, Animal , Down-Regulation/genetics , Epilepsy/therapy , Epilepsy/drug therapy , Mutation , NAV1.6 Voltage-Gated Sodium Channel/genetics , Oligonucleotides, Antisense/pharmacology , Oligonucleotides, Antisense/therapeutic use , RNA, Small Interfering/pharmacology , RNA, Small Interfering/therapeutic use , Seizures/genetics , Sodium Channels/genetics
7.
Angew Chem Int Ed Engl ; 62(48): e202311224, 2023 Nov 27.
Article in English | MEDLINE | ID: mdl-37840434

ABSTRACT

Fluorescent materials with high brightness play a crucial role in the advancement of various technologies such as bioimaging, photonics, and OLEDs. While significant efforts are dedicated to designing new organic dyes with improved performance, enhancing the brightness of existing dyes holds equal importance. In this study, we present a simple supramolecular strategy to develop ultrabright cyanine-based fluorescent materials by addressing long-standing challenges associated with cyanine dyes, including undesired cis-trans photoisomerization and aggregation-caused quenching. Supra-cyanines are obtained by incorporating cyanine moieties in a cyclic peptide-based supramolecular scaffold, and exhibit high fluorescence quantum yields (up to 50 %) in both solution and in the solid state. These findings offer a versatile approach for constructing highly emissive cyanine-based supramolecular materials.

8.
Front Neurosci ; 17: 1282201, 2023.
Article in English | MEDLINE | ID: mdl-37901435

ABSTRACT

Developmental and epileptic encephalopathies (DEEs) are severe seizure disorders with inadequate treatment options. Gain- or loss-of-function mutations of neuronal ion channel genes, including potassium channels and voltage-gated sodium channels, are common causes of DEE. We previously demonstrated that reduced expression of the sodium channel gene Scn8a is therapeutic in mouse models of sodium and potassium channel mutations. In the current study, we tested whether reducing expression of the potassium channel gene Kcnt1 would be therapeutic in mice with mutation of the sodium channel genes Scn1a or Scn8a. A Kcnt1 antisense oligonucleotide (ASO) prolonged survival of both Scn1a and Scn8a mutant mice, suggesting a modulatory effect for KCNT1 on the balance between excitation and inhibition. The cation channel blocker quinidine was not effective in prolonging survival of the Scn8a mutant. Our results implicate KCNT1 as a therapeutic target for treatment of SCN1A and SCN8A epilepsy.

9.
Cochrane Database Syst Rev ; 10: CD015144, 2023 10 09.
Article in English | MEDLINE | ID: mdl-37811673

ABSTRACT

BACKGROUND: This review is an update of a rapid review undertaken in 2020 to identify relevant, feasible and effective communication approaches to promote acceptance, uptake and adherence to physical distancing measures for COVID-19 prevention and control. The rapid review was published when little was known about transmission, treatment or future vaccination, and when physical distancing measures (isolation, quarantine, contact tracing, crowd avoidance, work and school measures) were the cornerstone of public health responses globally. This updated review includes more recent evidence to extend what we know about effective pandemic public health communication. This includes considerations of changes needed over time to maintain responsiveness to pandemic transmission waves, the (in)equities and variable needs of groups within communities due to the pandemic, and highlights again the critical role of effective communication as integral to the public health response. OBJECTIVES: To update the evidence on the question 'What are relevant, feasible and effective communication approaches to promote acceptance, uptake and adherence to physical distancing measures for COVID-19 prevention and control?', our primary focus was communication approaches to promote and support acceptance, uptake and adherence to physical distancing. SECONDARY OBJECTIVE: to explore and identify key elements of effective communication for physical distancing measures for different (diverse) populations and groups. SEARCH METHODS: We searched MEDLINE, Embase and Cochrane Library databases from inception, with searches for this update including the period 1 January 2020 to 18 August 2021. Systematic review and study repositories and grey literature sources were searched in August 2021 and guidelines identified for the eCOVID19 Recommendations Map were screened (November 2021). SELECTION CRITERIA: Guidelines or reviews focusing on communication (information, education, reminders, facilitating decision-making, skills acquisition, supporting behaviour change, support, involvement in decision-making) related to physical distancing measures for prevention and/or control of COVID-19 or selected other diseases (sudden acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS), influenza, Ebola virus disease (EVD) or tuberculosis (TB)) were included. New evidence was added to guidelines, reviews and primary studies included in the 2020 review. DATA COLLECTION AND ANALYSIS: Methods were based on the original rapid review, using methods developed by McMaster University and informed by Cochrane rapid review guidance. Screening, data extraction, quality assessment and synthesis were conducted by one author and checked by a second author. Synthesis of results was conducted using modified framework analysis, with themes from the original review used as an initial framework. MAIN RESULTS: This review update includes 68 studies, with 17 guidelines and 20 reviews added to the original 31 studies. Synthesis identified six major themes, which can be used to inform policy and decision-making related to planning and implementing communication about a public health emergency and measures to protect the community. Theme 1: Strengthening public trust and countering misinformation: essential foundations for effective public health communication Recognising the key role of public trust is essential. Working to build and maintain trust over time underpins the success of public health communications and, therefore, the effectiveness of public health prevention measures. Theme 2: Two-way communication: involving communities to improve the dissemination, accessibility and acceptability of information Two-way communication (engagement) with the public is needed over the course of a public health emergency: at first, recognition of a health threat (despite uncertainties), and regularly as public health measures are introduced or adjusted. Engagement needs to be embedded at all stages of the response and inform tailoring of communications and implementation of public health measures over time. Theme 3: Development of and preparation for public communication: target audience, equity and tailoring Communication and information must be tailored to reach all groups within populations, and explicitly consider existing inequities and the needs of disadvantaged groups, including those who are underserved, vulnerable, from diverse cultural or language groups, or who have lower educational attainment. Awareness that implementing public health measures may magnify existing or emerging inequities is also needed in response planning, enactment and adjustment over time. Theme 4: Public communication features: content, timing and duration, delivery Public communication needs to be based on clear, consistent, actionable and timely (up-to-date) information about preventive measures, including the benefits (whether for individual, social groupings or wider society), harms (likewise) and rationale for use, and include information about supports available to help follow recommended measures. Communication needs to occur through multiple channels and/or formats to build public trust and reach more of the community. Theme 5: Supporting behaviour change at individual and population levels Supporting implementation of public health measures with practical supports and services (e.g. essential supplies, financial support) is critical. Information about available supports must be widely disseminated and well understood. Supports and communication related to them require flexibility and tailoring to explicitly consider community needs, including those of vulnerable groups. Proactively monitoring and countering stigma related to preventive measures (e.g. quarantine) is also necessary to support adherence. Theme 6: Fostering and sustaining receptiveness and responsiveness to public health communication Efforts to foster and sustain public receptiveness and responsiveness to public health communication are needed throughout a public health emergency. Trust, acceptance and behaviours change over time, and communication needs to be adaptive and responsive to these changing needs. Ongoing community engagement efforts should inform communication and public health response measures. AUTHORS' CONCLUSIONS: Implications for practice Evidence highlights the critical role of communication throughout a public health emergency. Like any intervention, communication can be done well or poorly, but the consequences of poor communication during a pandemic may mean the difference between life and death. The approaches to effective communication identified in this review can be used by policymakers and decision-makers, working closely with communication teams, to plan, implement and adjust public communications over the course of a public health emergency like the COVID-19 pandemic. Implications for research Despite massive growth in research during the COVID-19 period, gaps in the evidence persist and require high-quality, meaningful research. This includes investigating the experiences of people at heightened COVID-19 risk, and identifying barriers to implementing public communication and protective health measures particular to lower- and middle-income countries, and how to overcome these.


Subject(s)
COVID-19 , Humans , COVID-19/prevention & control , Pandemics/prevention & control , Physical Distancing , Public Health , Communication
10.
Aust N Z J Public Health ; 47(3): 100068, 2023 Jun.
Article in English | MEDLINE | ID: mdl-37271059

ABSTRACT

OBJECTIVE: We describe COVID-19 risk reduction strategies adopted by Victorian adults during December 2021-January 2022, a period of high COVID-19 infection and limited government mandated public health measures. METHODS: In February 2022, participants of a Victorian-based cohort study (Optimise) completed a cross-sectional survey on risk reduction behaviours during December 2021-January 2022. Regression modelling estimated the association between risk reduction and demographics. RESULTS: A total of 556 participants were included (median age 47 years; 75% women; 82% in metropolitan Melbourne). Two-thirds (61%) adopted at least one risk reduction behaviour, with uptake highest among younger participants (18-34 years; adjusted relative risk (aRR): 1.20, 95% confidence interval [CI]: 1.01, 1.41) and those with a chronic health condition (aRR: 1.17, 95% CI: 1.02, 1.35). CONCLUSIONS: Participants adopted their own COVID-19 risk reduction strategies in a setting of limited government restrictions, with young people more likely to adopt a risk reduction strategy that did not limit social mobility. IMPLICATION FOR PUBLIC HEALTH: A public health response to COVID-19 that focusses on promoting personal risk reduction behaviours, as opposed to mandated restrictions, could be enhanced by disseminating information on and increasing availability of effective risk reduction strategies tailored to segments of the population.


Subject(s)
COVID-19 , Adult , Humans , Female , Adolescent , Middle Aged , Male , COVID-19/epidemiology , COVID-19/prevention & control , Cross-Sectional Studies , Cohort Studies , Risk Reduction Behavior
12.
Cochrane Database Syst Rev ; 3: CD013274, 2023 03 14.
Article in English | MEDLINE | ID: mdl-36917094

ABSTRACT

BACKGROUND: Partnering with consumers in the planning, delivery and evaluation of health services is an essential component of person-centred care. There are many ways to partner with consumers to improve health services, including formal group partnerships (such as committees, boards or steering groups). However, consumers' and health providers' views and experiences of formal group partnerships remain unclear. In this qualitative evidence synthesis (QES), we focus specifically on formal group partnerships where health providers and consumers share decision-making about planning, delivering and/or evaluating health services. Formal group partnerships were selected because they are widely used throughout the world to improve person-centred care. For the purposes of this QES, the term 'consumer' refers to a person who is a patient, carer or community member who brings their perspective to health service partnerships. 'Health provider' refers to a person with a health policy, management, administrative or clinical role who participates in formal partnerships in an advisory or representative capacity. This QES was co-produced with a Stakeholder Panel of consumers and health providers. The QES was undertaken concurrently with a Cochrane intervention review entitled Effects of consumers and health providers working in partnership on health services planning, delivery and evaluation. OBJECTIVES: 1. To synthesise the views and experiences of consumers and health providers of formal partnership approaches that aimed to improve planning, delivery or evaluation of health services. 2. To identify best practice principles for formal partnership approaches in health services by understanding consumers' and health providers' views and experiences. SEARCH METHODS: We searched MEDLINE, Embase, PsycINFO and CINAHL for studies published between January 2000 and October 2018. We also searched grey literature sources including websites of relevant research and policy organisations involved in promoting person-centred care. SELECTION CRITERIA: We included qualitative studies that explored consumers' and health providers' perceptions and experiences of partnering in formal group formats to improve the planning, delivery or evaluation of health services. DATA COLLECTION AND ANALYSIS: Following completion of abstract and full-text screening, we used purposive sampling to select a sample of eligible studies that covered a range of pre-defined criteria, including rich data, range of countries and country income level, settings, participants, and types of partnership activities. A Framework Synthesis approach was used to synthesise the findings of the sample. We appraised the quality of each study using the CASP (Critical Appraisal Skill Program) tool. We assessed our confidence in the findings using the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach. The Stakeholder Panel was involved in each stage of the review from development of the protocol to development of the best practice principles. MAIN RESULTS: We found 182 studies that were eligible for inclusion. From this group, we selected 33 studies to include in the final synthesis. These studies came from a wide range of countries including 28 from high-income countries and five from low- or middle-income countries (LMICs). Each of the studies included the experiences and views of consumers and/or health providers of partnering in formal group formats. The results were divided into the following categories. Contextual factors influencing partnerships: government policy, policy implementation processes and funding, as well as the organisational context of the health service, could facilitate or impede partnering (moderate level of confidence). Consumer recruitment: consumer recruitment occurred in different ways and consumers managed the recruitment process in a minority of studies only (high level of confidence). Recruiting a range of consumers who were reflective of the clinic's demographic population was considered desirable, particularly by health providers (high level of confidence). Some health providers perceived that individual consumers' experiences were not generalisable to the broader population whereas consumers perceived it could be problematic to aim to represent a broad range of community views (high level of confidence). Partnership dynamics and processes: positive interpersonal dynamics between health providers and consumers facilitated partnerships (high level of confidence). However, formal meeting formats and lack of clarity about the consumer role could constrain consumers' involvement (high level of confidence). Health providers' professional status, technical knowledge and use of jargon were intimidating for some consumers (high level of confidence) and consumers could feel their experiential knowledge was not valued (moderate level of confidence). Consumers could also become frustrated when health providers dominated the meeting agenda (moderate level of confidence) and when they experienced token involvement, such as a lack of decision-making power (high level of confidence) Perceived impacts on partnership participants: partnering could affect health provider and consumer participants in both positive and negative ways (high level of confidence). Perceived impacts on health service planning, delivery and evaluation: partnering was perceived to improve the person-centredness of health service culture (high level of confidence), improve the built environment of the health service (high level of confidence), improve health service design and delivery e.g. facilitate 'out of hours' services or treatment closer to home (high level of confidence), enhance community ownership of health services, particularly in LMICs (moderate level of confidence), and improve consumer involvement in strategic decision-making, under certain conditions (moderate level of confidence). There was limited evidence suggesting partnering may improve health service evaluation (very low level of confidence). Best practice principles for formal partnering to promote person-centred care were developed from these findings. The principles were developed collaboratively with the Stakeholder Panel and included leadership and health service culture; diversity; equity; mutual respect; shared vision and regular communication; shared agendas and decision-making; influence and sustainability. AUTHORS' CONCLUSIONS: Successful formal group partnerships with consumers require health providers to continually reflect and address power imbalances that may constrain consumers' participation. Such imbalances may be particularly acute in recruitment procedures, meeting structure and content and decision-making processes. Formal group partnerships were perceived to improve the physical environment of health services, the person-centredness of health service culture and health service design and delivery. Implementing the best practice principles may help to address power imbalances, strengthen formal partnering, improve the experiences of consumers and health providers and positively affect partnership outcomes.


Subject(s)
Health Personnel , Health Services , Humans , Community Participation , Caregivers
13.
BMC Med Res Methodol ; 23(1): 54, 2023 02 27.
Article in English | MEDLINE | ID: mdl-36849927

ABSTRACT

BACKGROUND: Longitudinal studies are critical to informing evolving responses to COVID-19 but can be hampered by attrition bias, which undermines their reliability for guiding policy and practice. We describe recruitment and retention in the Optimise Study, a longitudinal cohort and social networks study that aimed to inform public health and policy responses to COVID-19. METHODS: Optimise recruited adults residing in Victoria, Australia September 01 2020-September 30 2021. High-frequency follow-up data collection included nominating social networks for study participation and completing a follow-up survey and four follow-up diaries each month, plus additional surveys if they tested positive for COVID-19 or were a close contact. This study compared number recruited to a-priori targets as of September 302,021, retention as of December 31 2021, comparing participants retained and not retained, and follow-up survey and diary completion October 2020-December 2021. Retained participants completed a follow-up survey or diary in each of the final three-months of their follow-up time. Attrition was defined by the number of participants not retained, divided by the number who completed a baseline survey by September 302,021. Survey completion was calculated as the proportion of follow-up surveys or diaries sent to participants that were completed between October 2020-December 2021. RESULTS: At September 302,021, 663 participants were recruited and at December 312,021, 563 were retained giving an overall attrition of 15% (n = 100/663). Among the 563 retained, survey completion was 90% (n = 19,354/21,524) for follow-up diaries and 89% (n = 4936/5560) for monthly follow-up surveys. Compared to participants not retained, those retained were older (t-test, p <  0.001), and more likely to be female (χ2, p = 0.001), and tertiary educated (χ2, p = 0.018). CONCLUSION: High levels of study retention and survey completion demonstrate a willingness to participate in a complex, longitudinal cohort study with high participant burden during a global pandemic. We believe comprehensive follow-up strategies, frequent dissemination of study findings to participants, and unique data collection systems have contributed to high levels of study retention.


Subject(s)
COVID-19 , Adult , Humans , Female , Male , Victoria/epidemiology , Longitudinal Studies , Reproducibility of Results , COVID-19/epidemiology , Social Networking
14.
Article in English | MEDLINE | ID: mdl-36833883

ABSTRACT

Using an individual and family ecological systems model, we explored food security among a Marshallese cohort in Northwest Arkansas during the COVID-19 pandemic. We hypothesized that Marshallese households were experiencing high rates of food insecurity due to socioeconomic and systemic risk factors. Seventy-one Marshallese adults shared socioeconomic information about their household via an online survey. Descriptive results indicate that 91% of respondents report food insecurity. In terms of systemic barriers, almost half of Marshallese respondents do not have health insurance. Additionally, while most respondents report feeling calm, peaceful, and energetic, paradoxically, 81% report feeling depressed and downhearted at least some of the time. Logistic regression findings suggest that food insecurity is significantly related to education levels and household economic strain. These results are analogous with national findings, whereby non-native households are more likely to experience higher levels of food insecurity, lower rates of education, and higher economic strain than native households. As a collective community, the Marshallese could benefit from culturally responsive individual and family systems approaches for improving educational, social, financial, and health opportunities through workforce development, household income and asset development, and food security initiatives. Additional implications for policy, practice, and research are provided.


Subject(s)
COVID-19 , Adult , Humans , Socioeconomic Factors , Pandemics , Food Supply , Food Security
15.
Brain Impair ; 24(1): 39-53, 2023 03.
Article in English | MEDLINE | ID: mdl-38167579

ABSTRACT

BACKGROUND AND AIM: Rehabilitation therapy is a key part of the recovery pathway for people with severe acquired brain injury (ABI). The aim of this study was to explore inpatients' and their family members' experiences of a specialist ABI rehabilitation service. METHODS: A cross sectional, prospective mixed method study was undertaken at a metropolitan specialist ABI rehabilitation unit in Victoria, Australia. All inpatients and their family members of the service were invited to complete a satisfaction survey. Employing purposive sampling, semi-structured interviews were conducted with inpatients and/or their family members. RESULTS: In total, 111 people completed the satisfaction survey and 13 were interviewed. High levels of satisfaction with the specialist service were reported; the majority of inpatients (74%) and family members (81%) rated the overall quality of care received in the service as 'high' or 'very high'. Interviews revealed four main themes: (i) satisfaction with rehabilitation services, (ii) inconsistent communication, (iii) variable nursing care, and (iv) strengths and weakness of the rehabilitation environment. Overall, important components of a positive experience were being involved in decision making and discharge planning, effective communication and information processes, and being able to form therapeutic relationships with staff. Key sources of dissatisfaction for inpatients and family members related to inconsistency in care, accessing information about treatments in a format easily understood, and communication. CONCLUSION: Specialised rehabilitation is valued by inpatients and their family members alike. The findings highlight the importance of exploring inpatient experiences to optimise service delivery in a tailored, specialised rehabilitation programme.


Subject(s)
Brain Injuries , Adult , Humans , Cross-Sectional Studies , Prospective Studies , Brain Injuries/rehabilitation , Family , Victoria
16.
Article in English | MEDLINE | ID: mdl-36429570

ABSTRACT

BACKGROUND: Health organisations and stakeholders use social media for a range of functions, including engaging stakeholders in the design and quality improvement (QI) of services. Social media may help overcome some of the limitations of traditional stakeholder engagement methods. This scoping review explores the benefits, risks, barriers and enablers for using social media as a tool for stakeholder engagement in health service design and QI. METHODS: The searches were conducted on 16 August 2022. Inclusion criteria were: studies of any health service stakeholders, in any health setting, where social media was used as a tool for service design or QI. Data was analysed using deductive content analysis. A committee of stakeholders provided input on research questions, data analysis and key findings. RESULTS: 61 studies were included. Benefits included improved organisational communication and relationship building. Risks/limitations included low quality of engagement and harms to users. Limited access and familiarity with social media were frequently reported barriers. Making discussions safe and facilitating access were common enablers. CONCLUSION: The benefits, risks, barriers and enablers identified highlight the complexity of social media as an engagement tool for health service design and QI. Understanding these experiences may help implementers design more effective social media-based engagement activities.


Subject(s)
Quality Improvement , Social Media , Humans , Health Services , Stakeholder Participation , Communication
17.
Epilepsia ; 63(10): e125-e131, 2022 10.
Article in English | MEDLINE | ID: mdl-35892317

ABSTRACT

Voltage-gated sodium and potassium channels regulate the initiation and termination of neuronal action potentials. Gain-of-function mutations of sodium channel Scn8a and loss-of-function mutations of potassium channels Kcna1 and Kcnq2 increase neuronal activity and lead to seizure disorders. We tested the hypothesis that reducing the expression of Scn8a would compensate for loss-of-function mutations of Kcna1 or Kcnq2. Scn8a expression was reduced by the administration of an antisense oligonucleotide (ASO). This treatment lengthened the survival of the Kcn1a and Kcnq2 mutants, and reduced the seizure frequency in the Kcnq2 mutant mice. These observations suggest that reduction of SCN8A may be therapeutic for genetic epilepsies resulting from mutations in these potassium channel genes.


Subject(s)
Epilepsy , KCNQ2 Potassium Channel , Kv1.1 Potassium Channel , NAV1.6 Voltage-Gated Sodium Channel , Nerve Tissue Proteins , Animals , Epilepsy/genetics , KCNQ2 Potassium Channel/genetics , Kv1.1 Potassium Channel/genetics , Mice , Mutation , NAV1.6 Voltage-Gated Sodium Channel/genetics , Nerve Tissue Proteins/genetics , Oligonucleotides, Antisense
18.
BMJ Open ; 12(6): e058326, 2022 06 16.
Article in English | MEDLINE | ID: mdl-35710237

ABSTRACT

BACKGROUND: Guideline developers are encouraged to engage patients, carers and their representatives ('consumers') from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this. OBJECTIVES: To identify principles and approaches to broaden the diversity of consumers engaged in guideline development. DESIGN: Scoping review and semi-structured interviews. METHODS: We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms 'consumer' (patients, carers and their representatives), 'diversity' (defined using the PROGRESS-PLUS mnemonic) and 'consumer engagement' (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines. RESULTS: From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers' role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, 'disadvantaged groups'). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines. CONCLUSIONS: Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods.


Subject(s)
Caregivers , Ethnicity , Humans
19.
Urban Ecosyst ; 25(4): 1097-1109, 2022.
Article in English | MEDLINE | ID: mdl-35233162

ABSTRACT

Urban litterfall that is deposited on impervious surface leaches nutrients into stormwater, contributing to downstream eutrophication. Previous studies have focused on the leaching potential of deciduous leaf litter, while other smaller-volume litterfall types-such as blossoms and fruit-may leach significant amounts of nitrogen, phosphorus, and carbon. These additional litterfall types represent an unaccounted-for source of nutrients to urban stormwater. We explored variation in leaching potential of dissolved nutrients and organic carbon across litter types and species by collecting litterfall (blossoms, fruit, leaves) from ten common urban tree species. After 24 h of leaching, we measured total phosphorus (TP), total dissolved nitrogen (TDN), and dissolved organic carbon (DOC) contributions and compared differences across litter types and species. Litter basket estimates then allowed us to quantify annual litterfall inputs. We found that blossoms leached 3-20 times more TDN and 1.5-7 times more TP than leaves of the same species. Furthermore, considering litterfall mass, several species had greater springtime nutrient-leaching potential compared to fall due to high leaching potential in blossoms and lower potential in leaves. We found mixed effects of leaf crushing and leachate solution (stormwater, salinity) on leaching rates. This study highlights the need to consider all litterfall types as well as variation in urban forest communities and conditions when seeking to budget, control, and maintain for potential nutrient sources from the urban forest. Supplementary information: The online version contains supplementary material available at 10.1007/s11252-022-01217-8.

20.
Int J Health Policy Manag ; 11(10): 2287-2298, 2022 10 19.
Article in English | MEDLINE | ID: mdl-34814682

ABSTRACT

BACKGROUND: Social media can be used to engage consumers in hospital service design and quality improvement (QI) activities, however its uptake may be limited by a lack of guidance to support implementation. This article presents the perceived barriers and enablers in using social media for consumer engagement derived from an interview study with public hospital stakeholders. METHODS: Semi-structured interviews with 26 Australian hospital service providers and consumer representatives. Data were analysed using a deductive content analysis method. RESULTS: Data were collected between October 2019 and April 2020. Facebook was the platform most commonly used for consumer engagement activities. Barriers and enablers to social media-based consumer engagement were identified. The barrier themes were (1) fears and concerns; (2) lack of skills and resources for social media engagement; (3) lack of organisational processes and support; and (4) problems with social media platforms and the changing social media landscape. The enabler themes were: (1) hospitals facilitating access and use; (2) making discussions safe; (3) cultivating a social media community; and (4) building on success. CONCLUSION: Using social media to facilitate consumer engagement in hospital service design and QI activities is feasible and acceptable to service providers and consumers. Hospitals and their executives can create a supportive environment for social media-based engagement activities through developing clear governance systems and providing training and support to all users. Consumers need to be involved in co-designing social media-based activities and determining which forms of engagement are accessible and acceptable. For some consumers and service providers, barriers such as a lack of resources and distrust of social media companies might mean that social media-based engagement will be less acceptable for them. Because of this it is important that hospitals provide complementary methods of engagement (eg, face-to-face) alongside social media-based methods.


Subject(s)
Social Media , Humans , Australia , Quality Improvement , Hospitals, Public
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