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Caregivers of children with neurodiverse needs are known to experience challenges and hardship due to the increased needs of the child and the lack of support available. This study aimed to explore the support needs and well-being of caregivers of children with neurodiverse needs in Australia. Sixty-six caregivers participated in an online survey asking questions about support needs. The results highlighted five main themes that caregivers commonly experienced including: barriers to community engagement, impact on close relationships, negative impact on mental health and identity, financial hardship, and identified support needs. Findings identified multiple unmet needs existing amongst caregivers and further emphasises the importance of addressing these needs to improve the quality of life of caregivers of children with neurodiverse needs., (© 2023. The Author(s).)

Background: The most impactful research on pediatric type 1 diabetes (T1D) remains unknown. Objective: We aimed to evaluate the characteristics and impact of the 100 most-cited articles on pediatric T1D. Materials and Methods: Using a predefined bibliometric strategy, the Scopus database was searched for high-cited papers (HCPs) published from 2001 to 2020. Articles were evaluated for data on the publication year, countries, authors, journals, topics, and types. Social network analysis was performed to visualize the interaction among countries, organizations, and authors using VOSviewer software. Results: The top 100 HCPs received 390 to 4634 citations, averaging 773.5 citations per paper (CPP). The funded HCPs (n = 50) had a higher impact (CPP 791.5). The majority of HCPs (n = 83) were collaborative. Classifying by research type, 65 studies were clinical (n = 65), risk factors (n = 27), epidemiology (n = 26), pathophysiology (n = 16), treatment outcome (n = 13), genetics (n = 12), complications (n = 3), quality of life (n = 2), and prognosis (n = 1). The number of authors involved was 1,101, affiliated with 545 organizations in 27 countries; the USA (n = 64) and the UK (n = 24) were the most productive countries, whereas Australia and the UK were the most impactful. D.M. Nathan and J.M. Lawrence were the most prolific authors, while P. Raskin and J.M. Lachin were the most impactful. Conclusions: High-income countries such as the USA, UK, and Australia contribute significantly to high-impact pediatric T1D research. Funding and collaboration improve the impact of citations in publications. Less researched areas such as treatment outcomes, genetics, complications, quality of life, and prognosis should be the focus of future research on pediatric T1D. [ABSTRACT FROM AUTHOR]

Migrant families often invite grandparents to move to Australia when babies are born. In order to provide support to their families, many of these grandparents have to retire from their own professional careers and migrate to Australia to start new lives. Some speak English as an additional language, with or without formal education, prior to arriving in Australia. Once in Australia, these senior migrants can only access limited government-funded English learning, and they are frequently left to capitalize on informal learning. This paper discusses a case study of two Chinese-heritage senior migrants and the role English plays in their lives, and grandparenting in Australia. We argue that having the English capability for everyday activity within the family is key to their overall well-being, and that drawing directly on their past experiences and learning strengths can enhance their quality of life.

Background Attaining a good quality of life (QOL) is a priority for people living with HIV (PLHIV). We explored the interaction between QOL and the associated demographic, behavioural and clinical factors for PLHIV attending an outer-metropolitan clinical setting in Western Sydney, Australia. The clinic's cohort of PLHIV is characterised by relatively high proportions of women, heterosexual men, and patients from culturally and linguistically diverse (CALD) communities. Methods We assessed QOL using the PozQol tool that is specifically designed for PLHIV. QOL scores and de-identified socio-demographic and clinical data were extracted from the electronic and paper medical records of PLHIV who completed a PozQol tool (September 2020-March 2022). We performed descriptive analyses and logistic regression to identify associations. Results Among 188 patients, there were 77.7% men, 21.3% women, 1.1% transwomen; 67.0% were born overseas, 85.1% spoke English, 84.4% were Medicare-eligible, 85.9% were employed, 58.5% were diagnosed with HIV 6-20years ago, and 33.0% within the past 5years. Overall, 58.0% had a high or very high QOL. A low score in any domain was associated with Medicare-ineligibility. Low QOL scores in specific domains were associated with the following factors: health (being born overseas, having partners of both sexes), psychological (unemployment, having a mental health condition, having a viral load >20 copies/mL), social (unemployment), and functional (Medicare-eligibility, unemployment, having a viral load >20 copies/mL). Conclusions The PozQol tool has enhanced understanding of factors impacting on QOL for PLHIV attending our service in Western Sydney. Identifying patients with low QOL scores allows targeted clinical interventions to improve QOL, and re-alignment of clinical services to better support PLHIV.

Background: There is wide acknowledgement in the literature that social connection is protective against loneliness and depression. More robust research, however, is needed to evaluate interventions that promote social connection. This protocol paper outlines the evaluation of a community-wide social connection program, Connect Local , in metropolitan Melbourne, Australia to support people 65 years and older to increase access to local community services/activities; and to ascertain impact on social connection, loneliness, depressive symptoms, physical and mental wellbeing, and use of health services., Methods: A Type 1 Hybrid design, including program effectiveness, cost-effectiveness, and implementation evaluation of the Connect Local program, will be undertaken. Eighty-eight participants aged ≥65 years with one or more chronic health condition, who are also either experiencing or at risk of loneliness, social isolation and depressive symptoms will be invited to participate in the evaluation. Outcomes, measured at baseline, 3, 6 and 12 months, include loneliness, social isolation, depressive symptoms, social anxiety, goal attainment, wellbeing, quality of life and health care utilisation. A gender and age matched comparator group of 88 individuals will be recruited from outside the intervention local government area. Impact of the intervention on community service providers in the target region will be evaluated using mixed methods, where triangulation will be used to combine the qualitative and quantitative data using a deductive-simultaneous design. Changes in wellbeing and quality of life of community volunteers will also be measured. All groups will be interviewed to ascertain their experience and perceptions of the program. The economic evaluation will use a Social Return on Investment (SROI) approach, to include outcomes at the individual, community, and system levels. Implementation outcomes will consider Reach, Adoption, Feasibility, Acceptability, Appropriateness, Fidelity, and Sustainability of the intervention., Discussion: This study will provide a better understanding of the impacts of a community-wide social connection approach in older adults, the community and broader system., Clinical Trial Registration: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=385192; Identifier ACTRN12623000968673., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer AJ declared a shared affiliation with the author(s) ML to the handling editor at the time of review., (Copyright © 2024 Ogrin, Robinson, Rendell, Alrababah, Fineberg, Fiddes, Yerolemou, Lim, Engel and Lowthian.)

Background and Objective: Patients with heart failure experience high hospitalization. However, patients cannot recognize symptoms according to current approaches, which needs to be improved by new self-monitoring instruments and strategies. Thus, we aimed to assess a self-monitoring traffic light diary on outcomes of patients with heart failure., Methods: This was a single-blind, two-arm parallel group randomized controlled trial at the heart failure clinic of Tehran Heart Center (Tehran, Iran). Adult patients with a definitive diagnosis of heart failure with reduced ejection fraction (i.e., ejection fraction of less than 40 %), and New York Heart Association functional classes II-IV were included. A block-balanced randomization method was used to assign eligible subjects to the intervention or control group. Baseline data were collected before random allocation. Participants in the intervention group received a comprehensive intervention consisting of (1) self-care education by an Australian Heart Foundation booklet on heart failure, (2) regular self-monitoring of weight and shortness of breath at home, and (3) scheduled call follow-ups for three months. Patients in the control group received usual care. The primary outcome was heart failure self-care; the secondary outcomes were heart failure quality of life, knowledge, and all-cause hospitalization., Results: From June to August 2017, 68 patients were included in the study. The overall age of participants was 55 (13.6) years old, and 71 % of patients were male. A significant association between the intervention and self-care maintenance (β 5.1; 95 % CI 2.50 to 7.70, P < 0.001), self-care management (β 10.6; 95 % CI 6.50 to 14.8, P < 0.001), self-care confidence (β 8.0; 95 % CI 5.0 to 11.0, P < 0.001) and heart failure knowledge (β 1.7; 95 % CI 1.30, 2.04; P < 0.001) was found. However, there was no association between the intervention and quality of life (β 2.5; 95 % CI -0.79, 5.88, P 0.135) and hospitalization-free survival of the two groups (Log-Rank P 0.540)., Conclusion: A self-monitoring traffic light diary can improve self-care behaviors and heart failure knowledge in patients with heart failure with reduced ejection fraction., Rct Approval Id: Iranian Registry of Clinical Trials IRCT2017021032476N1., Study Protocol: PMCID: PMC6262204., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

In the residential aged care sector medication management has been identified as a major area of concern contributing to poor outcomes and quality of life for residents. Monitoring medication management in residential aged care in Australia has been highly reliant on small, internal audits. The introduction of electronic medication administration systems provides new opportunities to establish improved methods for ongoing, timely and efficient monitoring of a range of medication indicators, made more meaningful by linking medication data with resident characteristics and outcomes. Benchmarking contemporary medication indicators provides a further opportunity for improvement and is most effective when indicator data are adjusted to take account of confounding factors, such as residents' characteristics and health conditions. Roundtables provide a structure for sharing and discussing indicator data in a trusted and supportive environment and encourage the identification of strategies which may be effective in improving medication management. This paper describes a new project to establish, implement and evaluate a National Aged Care Medication Roundtable.

Background and Objectives: Little is known about elements of long-term care (LTC) that promote quality of life (QoL) for older Indigenous and First Nations peoples. This systematic review aimed to extend understanding of those deemed most important., Research Design and Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, systematic database and hand-searching were used to find published and unpublished qualitative studies and textual reports. A convergent integrated approach was used to synthesize data, according to the Joanna Briggs Institute methodology for mixed methods systematic reviews., Results: Included papers (11 qualitative; seven reports) explored views and experiences of Indigenous residents, families, and LTC staff from North America (8), South Africa (1), Norway (1), New Zealand (1), and Australia (7). Elements of care included: (a) codesigning and collaborating with Indigenous and First Nations communities and organizations to promote culturally safe care; (b) embedding trauma-informed care policies and practices, and staff training to deliver culturally safe services; (c) being respectful of individual needs, and upholding cultural, spiritual and religious beliefs, traditional activities and practices; (d) promoting connection to culture and sense of belonging through sustained connection with family, kin, and Indigenous and First Nations communities., Discussion and Implications: This review identifies elements or models of care that promote QoL for Indigenous and First Nations peoples in LTC. While included papers were mostly from the United States and Australia, the congruence of elements promoting QoL was evident across all population groups. Findings may be used to inform standards specific to the care of Indigenous and First Nations peoples., (© The Author(s) 2022. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Using three waves of data and tracing the same refugees over time, this paper shows that some factors associated with settlement experience are different from life satisfaction. Evidence shows that although settlement experience has not improved over time, life satisfaction of both male and female refugees has. The non-linear effect of age on life satisfaction disappears over time while that of settlement experience lingers on. Discrimination affects both male and female life satisfaction but is only a concern for females and the younger cohort's settlement experience. Psychological capital did not appear to moderate the discrimination effect, but this needs to be robustly examined further. Lastly, different support for refugees over time and a targeted focus on some groups is likely to be more effective than a blanket support policy. [ABSTRACT FROM AUTHOR]

Background: People with an acquired brain injury (ABI) find it challenging to use social media due to changes in their cognition and communication skills. Using social media can provide opportunities for positive connection, but there is a lack of interventions specifically designed to support safe and successful social media use after ABI. Aims: To investigate the outcomes of completing a social media skills intervention and identify barriers and facilitators for future implementation. Methods & Procedures: The study used a mixed‐methods, pre‐post‐intervention design. A total of 17 adults with an ABI were recruited. Participants completed an intervention that included a short self‐guided course about social media skills (social‐ABI‐lity course), and then participated in a private, moderated Facebook group over a 12‐week period (social‐ABI‐lity Facebook group). Data were collected over this period through observation of group activity and weekly surveys. They were also collected on social media use and quality of life at pre‐intervention, post‐intervention and after 3 months. Participants provided feedback on the experience of participating in the programme via a post‐intervention interview. Outcomes & Results: At post‐intervention, there were significant improvements in confidence in using Facebook (p = 0.002) and enjoyment of using Facebook to connect with others (p = 0.013). There was no significant change in reported quality of life, although participants described the multiple benefits of connection they perceived from involvement in the group. Observational data and feedback interviews were informative about the feasibility and acceptability of the intervention. Conclusions & Implications: This pilot study provided preliminary evidence that an intervention comprising a short, self‐guided training course and a private, moderated Facebook group improved outcomes for people with ABI. Key recommendations for future implementation include embedding active peer moderators within groups and taking an individualized approach to delivery of the intervention. WHAT THIS PAPER ADDS: What is already known on the subject: Research has documented the challenges that people with ABI experience in using social media, and the difficulty for rehabilitation clinicians in providing appropriate support in this field. What this paper adds to existing knowledge: This pilot study reports the outcomes of people with ABI completing a short, self‐guided social media skills course and participating in a private, moderated Facebook group. After the intervention, participants reported significantly increased confidence and enjoyment in using Facebook, described the benefits of connection found in the groups, and suggested potential improvements for future implementation. What are the potential or actual clinical implications of this work?: With the growing use of social media for connection and participation, there is a professional obligation to address social media communication skills in cognitive–communication rehabilitation for people with ABI. The findings of this study will inform interventions and future research to assist people with ABI to build their social media skills for communication, social support and a sense of connection. [ABSTRACT FROM AUTHOR]

This paper sets out the Collaborative Service Design Playbook, to guide planning, design, and implementation of co-created health services. Successful health service development and implementation is best guided by theoretically informed approaches; however, organisations often lack design and implementation know-how and have difficulty applying it. This study seeks to improve health service design and potential for scale-up by proposing a tool to guide an end-to-end process, drawing together service design, co-design, and implementation science; and exploring the tool's feasibility to establish a sustainable service solution developed with participants and experts that is scalable and sustainable. The Collaborative Service Design Playbook phases include, (1) Define the opportunity and initiatives, (2) Design the concept and prototype, (3) Deliver to scale and evaluate; and (4) Optimise to transform and sustain. This paper has implications for health marketing through providing an end-to-end approach with phased guidance for health service development, implementation, and scale up. [ABSTRACT FROM AUTHOR]

Introduction: Occupational therapy in residential aged care facilities (RACFs) can enhance residents' occupational engagement and wellbeing. However, industry reports suggest that occupational therapists in Australian RACFs have mostly provided physical therapies such as pain management via massage and not addressed residents' occupations. There is limited literature on what constitutes occupational therapists' practice in RACFs to inform policy and practice. The aim of this cross‐sectional survey was to explore practice patterns of occupational therapists working in Australian RACFs and influences on their practice. Methods: Occupational therapists working in Australian RACFs were invited from July 2019 to March 2020 to complete a self‐report online questionnaire via email and advertisements on industry websites, newsletters, and social media. The questionnaire asked therapists about their caseload, referrals, assessments, and interventions. Data were analysed descriptively and presented as frequencies and percentages. Results: A total of 214 occupational therapists completed the survey. Occupational therapists' daily practice largely focussed on pain management; other areas of practice included falls prevention, pressure care, and mobility. The Aged Care Funding Instrument in place at the time of the survey was identified as the leading factor influencing therapists' choice of assessments and interventions. Organisational policies and procedures were also perceived as key factors influencing occupational therapy practice. Conclusion: This paper highlights the influence of government funding and organisational policies in limiting occupational therapists' scope of practice and their ability to fully address the occupational needs of residents. Occupational therapists and the profession in general should be aware of factors in aged care funding models, and their application, that restrict occupational therapy practice and inhibit residents' function and advocate for change where needed. With the introduction of the Australian National Aged Care Classification funding model replacing Aged Care Funding Instrument, future research should explore potential changes to therapists practice following the implementation of the new funding model. [ABSTRACT FROM AUTHOR]

Introduction: The aim of this paper was to examine the client and psychosocial characteristics associated with polydrug use in patients with alcohol misuse as their primary drug of concern (PDC) seeking treatment from substance use treatment centres. Methods: Self‐report surveys were undertaken with clients attending 1 of 34 community‐based substance use treatment centres across Australia with alcohol as their PDC. Survey items included client's socio‐demographic characteristics, level of alcohol dependence, use of other drugs including tobacco, health and wellbeing factors including health‐related quality of life. The factors associated with polydrug use (alcohol use concurrent with at least one other drug) were examined. Results: In a sample of 1130 clients seeking treatment primarily for alcohol problems, 71% reported also using another drug. The most frequently used drug was tobacco (50%) followed by cannabis (21%) and benzodiazepines (15%). Excluding tobacco use, 35% of participants reported polydrug use. Factors associated with any polydrug use were younger age, lower education levels, lower levels of mental health related quality of life and housing risk (i.e., risk of eviction or experienced homelessness in past 4 weeks). When tobacco was excluded, factors associated with polydrug use were age, lower physical and mental health‐related quality of life, and housing risk. Discussion and Conclusions: Most adults seeking treatment for alcohol misuse as their PDC reported using another drug in addition to alcohol. Treatment services should be designed accordingly to maximise the likelihood of treatment engagement and success. [ABSTRACT FROM AUTHOR]

Introduction: Although there is a large proportion of people from culturally and linguistically diverse backgrounds within Australia, their rate of access to disability services is disproportionately low. This review aims to understand the service needs of people from culturally and linguistically diverse backgrounds with disability to facilitate engagement in meaningful occupations. Methods: Arksey and O'Malley's scoping review framework was employed. Ten databases were searched for Australian studies. A deductive content analysis framework was applied in the synthesis. Results: Fourteen papers were included. Themes that emerged include language and cultural needs and considerations, which highlights the need for information sharing to take account of intergenerational, intercultural and sociolinguistic differences. It also identified the need for improved training and skills of existing interpreters. Culturally competent and responsive services was another theme identified, which emphasised the need to enhance the workforces' understanding of cultural practices. There is also a strong call for a more culturally diverse workforce to reduce the use of some interpreters and to build a more culturally competent workforce. The last theme was responsive service delivery, which requires the governance to support the development of a nurturing trusting therapeutic relationship. Conclusions: Service providers should be trained on the inequities and intersectionality of this population. Further research is required to explore current disability policy in Australia with an intersectionality lens to ensure recommendations can be made to address barriers and ensure this population receives services in a manner that enhances their ability to engage in occupations meaningfully. [ABSTRACT FROM AUTHOR]

More people are working into older age, raising questions about how many hours they can work before their health becomes compromised. This paper models work-hour tipping points for mental health and vitality among older Australian workers aged 50–70 years. We use longitudinal data from the Household, Income and Labour Dynamics in Australia (HILDA) survey, 2005–2016 (about 44,900 observations), and bootstrapping Three Stage Least Squares (3SLS) estimation techniques to adjust for reverse and reciprocal relationships between wages, work hours and health. Our approach corrects for heteroscedasticity in the system equation error terms, and we estimate models on the relatively healthy older adults who have remained employed into older age. Among these older workers we observe weekly thresholds of 39–40 hours beyond which mental health and vitality decline. This average, however, hides variability in work-hour limits linked to overall health and occupation. Thus, weekly tipping points for blue- and pink-collar jobs are 7–9 hours lower compared to white-collar jobs, and even wider gaps (11 hours) are apparent for workers with poorer physical functioning, which becomes common as people age. Our modelling reveals that age is not the biggest limiting factor for how many hours older adults can work, rather their health and the types of jobs are critical, and likely widen the gap in who ages successfully or not. [ABSTRACT FROM AUTHOR]

Disability support systems have not consistently used family‐centered practices when supporting families of children with disability. Families have experienced structural and interpersonal barriers that have negatively impacted not only their child's quality of life, but also family quality of life (FQOL). The eight domains of QOL as defined by the International Association for the Scientific Study of Intellectual Disabilities [IASSID] are reflected in a family‐centered model of support developed for children and young people by Microboards Australia. The Microboards for Children [MB4C] model reflects best family centered practice based on principles that integrate well with recognised FQOL domains such as family relationships, support from other people and from disability‐related services, and leisure and enjoyment of life. The MB4C model aims to enhance families' knowledge, skills, confidence, and sense of wellbeing to support them develop a vision for an active, socially connected, and happy future with their child. The model consists of a structured network of formal and informal support to enhance not only their child or young person's personal relationships, social networks, and community inclusion but also to enable parents and siblings to access education, employment and to enjoy life in their community – all indicators of FQOL. In this paper we explore how these features of MB4C policies and practice align with family‐centered practice principles and with FQOL domains. We argue that the MB4C model provides an example of how FQOL may be enhanced by a holistic family‐centered disability service system that works in partnership with families with disability. [ABSTRACT FROM AUTHOR]

Objectives: Patient reported experience measures (PREMs) are tools often utilised in hospitals to support quality improvements and to provide objective feedback on care experiences. Less commonly PREMs can be used to support consumers choices in their hospital care. Little is known about the experience and views of the Australian consumer regarding PREMs nor the considerations these consumers have when they need to make decisions about attending hospital. This study aimed to explore consumer awareness of PREMs, consumer attitudes towards PREMs and the utility of PREMs as a decision-making tool in accessing hospital care. Methods: Qualitative study involving semi-structured interviews conducted over the phone. Participants (n = 40) were recruited from across Australia and purposively sampled according to key characteristics: holding private health insurance, > 30-years of age, may have accessed private hospital care in the past year, variety of educational and cultural backgrounds, and if urban or rural residing. Interviews were audio-recorded, transcribed, and analysed thematically. Results: Four overarching themes and six subthemes were identified from the data. Major findings were that prior awareness of PREMs was limited; however, many had filled in a PREM either for themselves or for someone they cared for following a hospital stay. Most respondents preferred to listen to experience of self or family/friends or the recommendation of their physician when choosing a hospital to attend. Participants appeared to be more interested in the treating clinician than the hospital with this clinician often dictating the hospital or hospital options. If provided choice in hospital, issues of additional costs, timeliness of treatment and location were important factors. Conclusion: While PREMs were considered a possible tool to assist in hospital decision-making process, previous hospital experiences, the doctor and knowing up-front cost are an overriding consideration for consumers when choosing their hospital. Consideration to format and presentation of PREMs data is needed to facilitate understanding and allow meaningful comparisons. Future research could examine the considerations of those consumers who primarily access public healthcare facilities and how to improve the utility of PREMs. [ABSTRACT FROM AUTHOR]

Chronic kidney disease (CKD) is a major cause of morbidity and mortality, contributing to approximately 20 000 deaths in 2021 in Australia. Importantly, progression of CKD can be substantially reduced if it is detected and treated early. Here we present the perspectives of a general practitioner (primary care physician), a nephrologist and a patient advocate on how the diagnosis and management of CKD in primary care could be improved. Early detection and treatment of CKD are impeded by limited patient awareness and knowledge, communication challenges between patients and doctors, and psychosocial issues, with these factors also interacting with, and exacerbating, each other. We make the following recommendations to help improve outcomes in patients with CKD: (1) identifying people at increased risk of CKD and ensuring they have a complete kidney health check (including estimated glomerular filtration rate, urine albumin-creatinine ratio and a blood pressure check) every 1−2 years; (2) using simple, nonconfrontational language and supportive resources to communicate with patients about kidney health; (3) implementing early treatment to slow the progression of CKD and avoid adverse cardiovascular disease outcomes; and (4) asking patient-orientated questions to support shared decision-making and empower patients to be active partners in their healthcare. We acknowledge that limited time is a major barrier to implementing these recommendations in primary care. Utilizing the expertise of the whole practice team, and adopting supportive technology to introduce efficiencies, are likely to be of benefit. By adopting these recommendations, we believe general practitioners have the opportunity to drive improved outcomes and quality of life for people living with CKD in Australia. [ABSTRACT FROM AUTHOR]

Introduction: We aim to report on the feasibility of establishment of the first paediatric cohort as part of the longitudinal database of the Australian Lupus Registry and Biobank (ALRB) and to describe the enrolment data with a focus on clinical characteristics, serological data, treatment strategies and patient/parent-reported outcome measures. Methods: All patients under the age of 18 years with a diagnosis of systemic lupus erythematosus (SLE) attending the paediatric rheumatology service of a single, tertiary hospital were identified. Patients were enrolled in the ALRB if they met ≥4/11 of the American College of Rheumatology (ACR) 1997 SLE classification criteria or the Systemic Lupus International Collaborating Clinics (SLICC) 2012 classification criteria. Enrolment data including demographics, clinical characteristics, serological profiles, disease activity and damage assessments were recorded. Peds-QL Rheumatology and General Modules were used to assess patient and parent-reported outcomes. Results: Twenty-seven patients were eligible for inclusion, with 26 patients (96%) consenting for enrolment. Twenty-five patients (92%) consented for biobanking. Twenty patients (77%) were female. The median age at enrolment was 16 years (interquartile range (IQR) 13.7, 17.4). The median disease duration from diagnosis was 3.2 years (IQR 1.4, 5.3). Sixteen patients (62%) had synovitis, 16 (62%) had cutaneous involvement, 4 (15%) had serositis, 17 (65%) had haematological involvement and 7 (27%) had renal involvement at enrolment. Nineteen patients (73%) were prescribed at least two disease-modifying anti-rheumatic medications (DMARDs). Hydroxychloroquine (n = 22, 85%) and mycophenolate mofetil (n = 9, 35%) were the most commonly prescribed DMARDs. The median SLEDAI-2K score was 2 (IQR 2, 4). Six patients (23%) had active disease (SLEDAI-2K ≥6) at enrolment. Three patients (11.5%) had reported damage using the SLICC/ACR Damage Index. Twenty-three children (88%) and eighteen parents (69%) completed the Paediatric Quality of Life Inventory. Quality of life scores reported across domains of physical, emotional, social and school functioning at enrolment were comparable to previously studied paediatric cohorts with SLE and other chronic diseases. Conclusion: We have established our centre as the first paediatric participating site of the ALRB, providing contemporary data on the clinical characteristics, serological profile and health-related quality of life outcomes of Australian children with SLE. Paediatric involvement with this national registry will provide a unique perspective for future clinical and scientific research. Collection of Australian-specific paediatric longitudinal data will also enable a broader understanding of SLE within a multicultural Australian population. [ABSTRACT FROM AUTHOR]

Background: There is little long-term causal evidence on the effect of physical activity on health-related quality of life. This study aimed to examine the associations between longitudinal patterns of physical activity over 15 years and health-related quality of life in both the physical and mental health domains, in a cohort of middle-aged Australian women. Methods and findings: We used data collected at 3-year intervals (1998 to 2019) from 11,336 participants in the Australian Longitudinal Study on Women's Health (ALSWH) (1946 to 1951 birth cohort). Primary outcomes were the physical (PCS) and mental health component summary (MCS) scores (range from 0 to 100; higher scores indicate higher perceived physical/mental health) from the SF-36 in 2019 (when women aged 68 to 73 years). Using target trial emulation to imitate a randomized controlled trial (RCT), we tested 2 interventions: (1) meeting the World Health Organization (WHO) physical activity guidelines consistently throughout the 15-year "exposure period" (2001 to 2016; when women aged 50–55 to 65–70 years; physical activity assessed every 3 years); and (2) not meeting the guidelines at the beginning of the exposure period but starting to first meet the guidelines at age 55, 60, or 65; against the control of not meeting the guidelines throughout the exposure period. Analysis controlled for confounding using marginal structural models which were adjusted for sociodemographic and health variables and conditions. Consistent adherence to guidelines during the exposure period (PCS: 46.93 [99.5% confidence interval [CI]: 46.32, 47.54]) and first starting to meet the guidelines at age 55 (PCS: 46.96 [99.5% CI: 45.53, 48.40]) were associated with three-point higher PCS (mean score difference: 3.0 [99.5% CI: 1.8, 4.1] and 3.0 [99.5% CI:1.2, 4.8]) than consistent non-adherence (PCS: 43.90 [99.5% CI: 42.79, 45.01]). We found a similar pattern for most SF-36 subscales but no significant effects of the interventions on MCS. The main limitations of the study were that it may not account for all underlying health conditions and/or other unmeasured or insufficiently measured confounders, the use of self-reported physical activity and that findings may not be generalizable to all mid-age women. Conclusions: Results from the emulated RCT suggest women should be active throughout mid-age, ideally increasing activity levels to meet the guidelines by age 55, to gain the most benefits for physical health in later life. Binh Nguyen and colleagues, use longitudinally collected data and target trial emulation methods to explore the impact of mid-life physical activity on the health outcomes of Australian women later in life. Author summary: Why was this study done?: ○ The evidence for an association between physical activity and health-related quality of life has been based primarily on cross-sectional studies and randomized controlled trials (RCTs) with short-term outcomes. ○ To date, few longitudinal studies have examined the associations between long-term patterns of physical activity and health-related quality of life, measured physical activity at more than one time point, and examined the causal effects of physical activity. What did the researchers do and find?: ○ We leveraged data on >11,000 women enrolled in the Australian Longitudinal Study on Women's Health (ALSWH) and applied targeted maximum likelihood estimation (TMLE) to emulate various target trials of physical adherence regimes and explore how physical activity in midlife impacts health outcomes in later life. ○ We found that consistent adherence to physical activity guidelines over 15 years was associated with better health-related quality of life in the physical health domain, especially physical functioning. ○ Meeting physical activity guidelines earlier in midlife and especially by age 55 resulted in better physical health-related quality of life outcomes in later life but the same impact on mental health domain outcomes was less evident. What do these findings mean?: ○ This study provides insights into the long-term effects of different patterns of physical activity during mid-age on later health-related quality of life in Australian women. ○ Combined with existing evidence, it contributes to the growing evidence concerning the benefits of maintaining or adopting an active lifestyle in mid-age. ○ The study presents an important message for public health which encourages women to be active throughout mid-age, even if they start meeting physical activity guidelines in their mid-50s, to gain the most benefits for physical health-related quality of life latterly. ○ Limitations of the study included reliance on self-reported physical activity, an inability to account for all contributing factors and findings may not be generalizable to all mid-age Australian women or to women outside of Australia. [ABSTRACT FROM AUTHOR]

Many autistic adults are likely to experience poor financial wellbeing and hardship due to unemployment and under-employment. Research in the general population demonstrates that subjective financial wellbeing—how people perceive their financial situation—influences quality of life. There is no research, however, examining the subjective financial wellbeing of autistic people. This study therefore aimed to (1) understand the subjective financial wellbeing of a sample of autistic adults living in Australia compared to a general Australian population sample and (2) identify the predictors of subjective financial wellbeing in this sample of autistic adults. To this end, 191 autistic adults aged 18–83 years (mean = 39.28, standard deviation = 11.74) completed an online survey about their economic status, financial wellbeing, financial behaviors, confidence in money management skills, and anxiety and depression symptoms. Almost half of our sample felt it was a struggle to make ends meet, whereas only one-third of the general Australian population felt this way. Similar to the general population, autistic people's income and their financial behaviors (specifically, saving and not borrowing for everyday expenses) predicted their sense of financial wellbeing. Our findings have implications for both research and practice. Researchers have found the way people feel about their financial situation is related to their quality of life. We know that many autistic people find it hard to find a job. And for those autistic people who have a job, they are often underpaid. Not having a job or being underpaid often means having low income. Having low income is likely to influence how autistic people feel about their financial situation. However, no research has looked at these issues for autistic people. This is the first study that helps us learn more about what autistic adults think about their financial situation. We looked at autistic people's thoughts on this issue compared to people from the general Australian population. We also looked at what things might impact how autistic people feel about their financial situation—which might be how much money they earn, what they do with that money, and their mental health. Many autistic adults felt they were struggling with financial wellbeing and this was connected both to the level of their income and how they said they managed their money. Those who were able to save and not borrow for everyday expenses reported feeling a greater sense of financial wellbeing. Concrete changes might help to improve autistic people's financial wellbeing. We need to investigate how we can help autistic people find and keep well-paying jobs. And we need to work out the best ways of equipping autistic people with the skills they need in financial matters. [ABSTRACT FROM AUTHOR]

Obesity can increase the risk of postoperative complications. Despite increased demand for patients living with obesity to lose weight prior to common surgical procedures, the impact of intentional weight loss on surgical outcomes is largely unknown. We aimed to conduct a pilot study to assess the feasibility of a full-scale randomised controlled trial (RCT) to examine the effect of preoperative dietitian-led Very Low Calorie Diet (VLCD) Clinic on surgical outcomes in gynaecology and general surgeries. Between August 2021 and January 2023, a convenience sample of adults living with obesity (BMI ≥ 30 kg/m2) awaiting gynaecology, laparoscopic cholecystectomy and ventral hernia repair procedures were randomised to dietitian-led VLCD (800–1000 kcal using meal replacements and allowed foods), or control (no dietary intervention), 2–12 weeks preoperatively. Primary outcome was feasibility (recruitment, adherence, safety, attendance, acceptability and quality of life (QoL)). Secondary outcomes were anthropometry and 30-d postoperative outcomes. Outcomes were analysed as intention-to-treat. Fifty-one participants were recruited (n 23 VLCD, n 28 control), mean 48 (sd 13) years, 86 % female, and mean BMI 35·8 (sd 4·6) kg/m2. Recruitment was disrupted by COVID-19, but other thresholds for feasibility were met for VLCD group: high adherence without unfavourable body composition change, high acceptability, improved pre/post QoL (22·1 ± 15 points, < 0·001), with greater reductions in weight (–5·5 kg VLCD v. −0·9 kg control, P < 0·05) waist circumference (–6·6 cm VLCD v. +0·6 control, P < 0·05) and fewer 30-d complications (n 4/21) than controls (n 8/22) (P > 0·05). The RCT study design was deemed feasible in a public hospital setting. The dietitian-led VLCD resulted in significant weight loss and waist circumference reduction compared with a control group, without unfavourable body composition change and improved QoL. [ABSTRACT FROM AUTHOR]

Structured health system-based programs, such as cardiac rehabilitation, may reduce the risk of recurrent stroke. This study aimed to co-design and evaluate a structured program of rehabilitation, developed based on insights from focus groups involving stroke survivors and health professionals. Conducted in Tasmania, Australia in 2019, the 7-week program comprised one hour of group exercise and one hour of education each week. Functional capacity (6 min walk test), fatigue, symptoms of depression (Patient Health Questionnaire), and lifestyle were assessed pre- and post-program, with a historical control group for comparison. Propensity score matching determined the average treatment effect (ATE) of the program. Key themes from the co-design focus groups included the need for coordinated care, improved psychosocial management, and including carers and peers in programs. Of the 23 people approached, 10 participants (70% men, mean age 67.4 ± 8.6 years) completed the program without adverse events. ATE analysis revealed improvements in functional capacity (139 m, 95% CI 44, 234) and fatigue (−5 units, 95% CI −9, −1), with a small improvement in symptoms of depression (−0.8 units, 95% CI −1.8, 0.2) compared to controls. The co-designed program demonstrated feasibility, acceptability, and positive outcomes, suggesting its potential to support stroke survivors. [ABSTRACT FROM AUTHOR]

Objective: Clarifying the distinctions between art-based creative activities in the domains of occupational therapy and art therapy in the context of stroke rehabilitation, while also describing the effects of art-based creative activities on stroke rehabilitation. Design: Scoping review. Data source: A systematic search was performed in nine databases (Web of Science, PubMed, EMBASE, Cochrane Library, CINAHL and four Chinese database) from their inception to December 2023. Review methods: The study included randomized and non-randomized controlled trials involving art-based creative activities, as well as qualitative research providing detailed intervention measures. The study focused on stroke patients, with primary outcomes related to patients' physiological recovery, psychological well-being, ADL, etc. Data extraction included information on intervention strategies and study results. Results: Seventeen studies were included, extracting six similarities and differences in creative activity between two domains. Creative activities were observed to have positive impacts on daily living activities, limb motor function, fine motor ability, and emotional well-being in stroke patients. Conclusion: Creative activities, whether in occupational therapy or art therapy, involve providing participants with tangible crafting materials for the creation of artistic works. Future stroke rehabilitation practices should tailor activities and intervention focus based on patients' rehabilitation needs, preferences, and cultural background. The current comprehensive analysis provides initial support for the potential positive role of creative activities in stroke rehabilitation, but further in-depth research is needed to confirm their effectiveness. [ABSTRACT FROM AUTHOR]

Background: Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report. Objectives: To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC). Methods: A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores. Results: Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective. Conclusion: Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care. [ABSTRACT FROM AUTHOR]

Background: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). Methods: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. Results: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. Conclusions: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. Systematic review pre-registration: PROSPERO [CRD42021244859]. [ABSTRACT FROM AUTHOR]

In this article, we explore the benefits of recognizing the impact of intersectionality on access to, and provision of, brain injury care in a First Nations context. While disadvantage and discrimination are often associated with the intersection of culture, gender, disability, and socioeconomic disadvantage, it is only when these factors are explored together that clinicians can really understand what people need to recover and thrive following acquired brain injury. In this article, we challenge speech-language pathologists to examine their own practices, to look beyond Western models of health and constraints of many current institutional models of care and ways of framing research, to acknowledge historical and ongoing colonizing influences, and to engage with community-led solutions. We provide a model of Aboriginal-led care, where intersection of discrimination and marginalization is minimized and the multiple components of the individual, carers/communication partners, and the environment become empowering factors instead. [ABSTRACT FROM AUTHOR]

Through a case study on Bribie Island in Queensland, Australia, this study investigates Naturally Occurring Retirement Communities (NORCs) as a viable alternative for ageing-in-place. Aim: The objectives were to investigate why older adults relocate to Bribie Island, how they perceive their living environment, and their future relocation intentions. Method: The research data were attained through semi-structured interviews with 21 Bribie Island residents, aged 65 and older. These data provided the basis for an in-depth understanding of the residents' perspectives and experiences, with respect to their community and living conditions. Results: The findings indicate that, overall, the participants expressed a high level of satisfaction with their current living environment; however, they also highlight areas for improvement, particularly the transportation and healthcare facilities. Significantly, most respondents confirmed their desire and intention to continue residing on the island. Conclusion: As exemplified by this Bribie Island case study, this study confirms that NORCs offer desirable settings for ageing-in-place. Recognizing the diversity and range of personal preferences, this study emphasizes the importance of ongoing research to develop responsive, inclusive, and supportive environments, to strategically improve the amenities within future NORCs. [ABSTRACT FROM AUTHOR]