Multiple Sclerosis and COVID-19: Health and healthcare access, health information and consumer co-created strategies for future access at times of crisis.

BACKGROUND: Persons with multiple sclerosis (MS) need regular access to medical services for optimal health outcomes. During the COVID-19 crisis, evidence indicated some detrimental health changes in persons with MS. Maintaining access to healthcare providers and healthcare information may minimise detrimental health changes during times of crisis. In Australia, there is limited evidence of consultation with people who have chronic health conditions or disabilities regarding government decisions to restrict healthcare access and in the provision of health guidance during the COVID-19 crisis. Yet, there are good examples of government consultation with other minority populations in Australia, leading to beneficial outcomes. OBJECTIVE: To identify MS community members' (persons with MS carers, advocates, healthcare providers) concerns about the health and healthcare access of persons with MS, during the second year of the COVID-19 pandemic and to collaborate with consumers in the MS community to co-create strategies to improve future access and health information provision at times of crisis. METHOD: We undertook a consumer-co-created mixed-method study in the second year of the COVID-19 pandemic to identify healthcare access needs for MS. We presented results to our stakeholder group to identify support needs during crises. Persons with MS and care providers in the MS community completed an online survey and online interviews, and the stakeholder group participated in a stakeholder workshop. RESULTS: Forty-four people participated in surveys, 33 completed interviews, and seven stakeholders participated in the stakeholder workshops. Three themes were identified from the surveys and interviews: health concerns, accessing healthcare services and communication sources. Healthcare providers (76.9 % of persons with MS and 77.8 % of care providers) and websites specific to the pandemic (76.9 % of persons with MS and 83.3 % of care providers) were identified by most survey respondents as preferred information sources during the COVID-19 crisis. Consultation with stakeholders resulted in the co-creation of strategies directed at communication, health, and lifestyle, as well as policies and protocols to address the needs of the MS community during crises. CONCLUSION: We listened to persons with MS and care providers to identify strategies to support health-communication, -access, and -lifestyle during crises. Consumer-created strategies are directed at national and local health advocacy organisations and governments. They are relevant for the coordinated healthcare planning of persons with chronic health conditions and disabilities during crises, such as those experienced by persons with MS.

A pioneering EMR-embedded digital health literacy tool reveals healthcare disparities for diverse older adults.

BACKGROUND: The COVID-19 pandemic transformed healthcare delivery with the rapid adoption of telehealth and digital technologies to access healthcare. Interventions are needed to ensure that older people in underserved communities do not face new technology-driven healthcare disparities. This article describes pioneering electronic medical record (EMR) embedded tools to assess and support each diverse patient's digital health literacy. METHODS: We designed and validated a rapid EMR-embedded Digital Health Engagement Tool (DHET) to assess each patient's digital literacy in English and Spanish. We built a separate, EMR-generated auto-scoring function to assess patient use of telehealth and healthcare navigation as recorded within the EMR. Combined, the tools created a complete digital literacy assessment for each patient. We then deployed the tools to conduct a pilot study to elucidate disparities. RESULTS: A total of 112 ethnic/racial diverse older patients were enrolled (mean age was 78, ranging from 57 to 96) years (SD = 8.04). The female participants were 72.3%. Among the participants, non-Hispanic Whites were 47.3%; Hispanic 25.0%; non-Hispanic Asian 19.6%; non-Hispanic others (including multi-race and non-Hispanic Black/African Americans) 8.0%. Digital literacy disparities were revealed for older adults, particularly those over 70 years old, female gender, and those reporting relying on a helper. CONCLUSION: New EMR-embedded tools enable healthcare systems to assess the ability of patients to navigate and utilize EMR capabilities, such as video telehealth appointments, messaging providers, reviewing labs/radiology reports, and requesting prescriptions. The study identified significant challenges for older patients in navigating EMRs and calls for healthcare systems to better support patient learning.

Trajectory of adjustment difficulties following disaster: 10-year longitudinal cohort study.

BACKGROUND: Although much is known about psychopathology such as post-traumatic stress disorder (PTSD) and depression following bushfire (also known as wildfire), little is known about prevalence, trajectory and impacts for those experiencing general adjustment difficulties following exposure to these now-common events. AIMS: This was an exploratory analysis of a large cohort study that examined the prevalence, trajectory and risk factors of probable adjustment disorder over a 10-year period following bushfire exposure. METHOD: The Beyond Bushfires study assessed individuals exposed to a large and deadly bushfire across three time points spanning 10 years. Self-report survey data from participants from areas with moderate and high levels of fire-affectedness were analysed: n = 802 participants at Wave 1 (3-4 years post-fires), n = 596 at Wave 2 (5 years post-fires) and n = 436 at Wave 3 (10 years post-fires). Surveys indexed fire-related experiences and post-fire stressors, and comprised the six-item Kessler Psychological Distress Scale (probable adjustment disorder index), four-item Posttraumatic Stress Disorder Checklist (probable fire-related PTSD) and nine-item Patient Health Questionnaire (probable major depressive episode). RESULTS: Prevalence of probable adjustment disorder was 16% (Wave 1), 15% (Wave 2) and 19% (Wave 3). Probable adjustment disorder at 3-4 years post-fires predicted a five-fold increase in risk for escalating to severe psychiatric disorder (i.e. probable fire-related PTSD/major depressive episode) at 10 years post-fires, and was associated with post-fire income and relationship stressors. CONCLUSIONS: Adjustment difficulties are prevalent post-disaster, many of which are maintained and exacerbated over time, resulting in increased risk for later disorder and adaptation difficulties. Psychosocial interventions supporting survivors with adjustment difficulties may prevent progression to more severe disorder.

Priority populations' experiences of isolation, quarantine and distancing for COVID-19: protocol for a longitudinal cohort study (Optimise Study).

INTRODUCTION: Longitudinal studies can provide timely and accurate information to evaluate and inform COVID-19 control and mitigation strategies and future pandemic preparedness. The Optimise Study is a multidisciplinary research platform established in the Australian state of Victoria in September 2020 to collect epidemiological, social, psychological and behavioural data from priority populations. It aims to understand changing public attitudes, behaviours and experiences of COVID-19 and inform epidemic modelling and support responsive government policy. METHODS AND ANALYSIS: This protocol paper describes the data collection procedures for the Optimise Study, an ongoing longitudinal cohort of ~1000 Victorian adults and their social networks. Participants are recruited using snowball sampling with a set of seeds and two waves of snowball recruitment. Seeds are purposively selected from priority groups, including recent COVID-19 cases and close contacts and people at heightened risk of infection and/or adverse outcomes of COVID-19 infection and/or public health measures. Participants complete a schedule of monthly quantitative surveys and daily diaries for up to 24 months, plus additional surveys annually for up to 48 months. Cohort participants are recruited for qualitative interviews at key time points to enable in-depth exploration of people's lived experiences. Separately, community representatives are invited to participate in community engagement groups, which review and interpret research findings to inform policy and practice recommendations. ETHICS AND DISSEMINATION: The Optimise longitudinal cohort and qualitative interviews are approved by the Alfred Hospital Human Research Ethics Committee (# 333/20). The Optimise Study CEG is approved by the La Trobe University Human Ethics Committee (# HEC20532). All participants provide informed verbal consent to enter the cohort, with additional consent provided prior to any of the sub studies. Study findings will be disseminated through public website (https://optimisecovid.com.au/study-findings/) and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05323799.

Individual and community experiences of posttraumatic growth after disaster: 10 years after the Australian Black Saturday bushfires.

OBJECTIVE: To understand longer-term posttraumatic growth (PTG) and how this is associated with individual and community bushfire experiences. METHOD: Survey data (n = 391) from the Beyond Bushfires and the 10-year Beyond Bushfires studies were analyzed. Multilevel modeling examined relationships between basic individual demographics, bushfire exposure, and community-level variables at 3-4 years after the fires, and PTG at 10 years using the short form of the PTG Inventory. RESULTS: Ten years after these Australian bushfires, being female, experiencing higher degrees of property loss, and stronger individual sense of community were the factors associated with PTG. Approximately 12% of the variance observed in PTG scores was attributable to differences in PTG across communities. Individuals from medium and high bushfire-affected communities reported significantly higher PTG relative to those in low bushfire-affected communities. While there was evidence of community differences in PTG, and individuals' own sense of community was positively and significantly associated with increased PTG, community-level cohesion scores were not found to be significantly related to PTG (although the trend was in the expected direction). CONCLUSIONS: PTG is evident in longer-term disaster recovery. While PTG appears to vary across communities, the findings suggest that it is an individual's own sense of community (rather than community-level cohesion) that is most closely related to this longer-term growth following a bushfire event. While PTG is currently understood as an outcome of individual-level perceptions, community-level experiences shape the potential for positive transformations to occur after disasters and warrant further investigation. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

COVID-19 disaster recovery capitals: A conceptual framework to guide holistic and strengths-based support strategies.

ISSUE ADDRESSED: The COVID-19 pandemic bears many similarities to other disasters such as bushfires, earthquakes and floods. It also has distinctive features including its prolonged and recurrent nature and the social isolation induced by pandemic responses. Existing conceptual frameworks previously applied to the study of disaster, such as the Recovery Capitals Framework (RCF), may be useful in understanding experiences of the COVID-19 pandemic and in guiding agencies and governments tasked with supporting communities. METHODS: This paper presents an analysis of interviews conducted with residents of the Australian state of Victoria in 2020-2021. The RCF was used to analyse how participant experiences and well-being were influenced by seven forms of capital-social, human, natural, financial, built, cultural and political-with particular focus on the interactions between these capitals. RESULTS: Social capital featured most prominently in participants' accounts, yet the analysis revealed important interactions between social and other capitals that shaped their pandemic experiences. The RCF supported a strengths-based and holistic analysis while also revealing how inequities and challenges were compounded in some cases. CONCLUSIONS: Findings can be leveraged to develop effective and innovative strategies to support well-being and disrupt patterns of compounding inequity. Applying the RCF in the context of COVID-19 can help to link pandemic research with research from a wide range of disasters. SO WHAT?: In an increasingly complex global landscape of cascading and intersecting disasters including pandemics, flexible and nuanced conceptual approaches such as the RCF can generate valuable insights with practical implications for health promotion efforts.

Sleep disturbances and interrelationship between persons with dementia and family caregivers: The lived experiences of Korean American Dyads.

BACKGROUND: Little research has investigated sleep quality in dyadic interrelationships between persons with dementia (PWD) and family caregivers, particularly among immigrant ethnic minorities, such as Korean Americans. PURPOSE: The study aimed to describe lived experiences of sleep disturbances and sleep interrelationships between Korean American PWD and their family caregivers. METHODS: A descriptive qualitative design used semi-structured interviews with cohabitating PWD-caregiver dyads. RESULTS: Eleven Korean American dyads participated (PWD mean age: 82.7, SD=2.3; caregivers mean age: 69.1, SD=10.2). Major themes included (1) linked sleep disturbances between PWD and caregivers, (2) interrelationship in dyads, (3) language challenges within and outside the dyads, and (4) strategies that improve sleep quality for dyads. CONCLUSION: Findings demonstrated bidirectional influences in dyadic sleep disturbances, where caregiving reciprocally impacted PWD sleep as part of an interactional unit. Communication barriers and limited community resources posed challenges for these dyads. Future sleep interventions should consider culturally competent, dyadic approaches.

Resident Synovial Macrophages in Synovial Fluid: Implications for Immunoregulation in Infectious and Inflammatory Arthritis.

Objectives: Resident synovial macrophages (RSM) provide immune sequestration of the joint space and are likely involved in initiation and perpetuation of the joint-specific immune response. We sought to identify RSM in synovial fluid (SF) and demonstrate migratory ability, in additional to functional changes that may perpetuate a chronic inflammatory response within joint spaces. Methods: We recruited human patients presenting with undifferentiated arthritis in multiple clinical settings. We used flow cytometry to identify mononuclear cells in peripheral blood and SF. We used a novel transwell migration assay with human ex-vivo synovium obtained intra-operatively to validate flow cytometry findings. We used single cell RNA-sequencing (scRNA-seq) to further identify macrophage/monocyte subsets. ELISA was used to evaluate the bone-resorption potential of SF. Results: We were able to identify a rare population of CD14dim, OPG+, ZO-1+ cells consistent with RSM in SF via flow cytometry. These cells were relatively enriched in the SF during infectious processes, but absolutely decreased compared to healthy controls. Similar putative RSM were identified using ex vivo migration assays when MCP-1 and LPS were used as migratory stimulus. scRNA-seq revealed a population consistent with RSM transcriptionally related to CD56+ cytotoxic dendritic cells and IDO+ M2 macrophages. Conclusion: We identified a rare cell population consistent with RSM, indicating these cells are likely migratory and able to initiate or coordinate both acute (septic) or chronic (autoimmune or inflammatory) arthritis. RSM analysis via scRNA-seq indicated these cells are M2 skewed, capable of antigen presentation, and have consistent functions in both septic and inflammatory arthritis.

Qualitative differences in perspective on children's quality of life between children with cerebral palsy and their parents.

BACKGROUND: Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child's life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children's and adults' definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child and parent interviews were analysed separately using constructivist grounded theory methods and then findings were integrated to examine similarities and differences. RESULTS: All participants sought child inclusion in social activities, education, and recreation, requiring negotiation, adaptations, and advocacy. Five conceptual categories emerged from child interviews: socialising, play, negotiating limitations, self-identity, and developing agency. This reflected an individual model of QOL supporting child development goals. Parent interview findings revealed concepts related to child-specific QOL (day-to-day functioning and enabling child goals), as well as parent and family functioning concepts aligned to models of "family QOL", embracing impacts of family relationships and the interdependence of QOL among family members. CONCLUSIONS: This study identified similarities and differences in child and parent perceptions of QOL for the child with CP. Children provided insights into the importance of play and peer support, and their developing self-identity and sense of agency. Self-directed free play, especially, was identified by children but not parents as a central everyday activity promoting wellbeing and social inclusion. Parents discussed family functioning and aspects outside of child sight, such as managing time and financial resources. Relying on parents' perspective alone to model child QOL misses valuable information that children contribute. Equally, child report alone misses parent experiences that directly influence child QOL. There is value in incorporating family QOL into parent reports while developing a conceptually separate child self-report QOL instrument.

Health Support for At-Risk Older Adults during COVID-19.

Older adults are highly susceptible to COVID-19 infection and at the highest risk for severe disease and death. Yet, older adults lacked access to accurate and easy-to-use COVID-19 information and support early in the pandemic. This prospective, experimental cohort study sought to examine whether older adults could be engaged during the pandemic through a community partner and if a low-touch intervention, designed with health literacy best practices, could positively impact COVID-19 knowledge, mitigation behaviors, telehealth/doctor visits, exercise, and loneliness. A senior resource kit was distributed to older adults sheltering at home through food assistance program agents from October 2020 to February 2021; the kit was developed using health literacy best practices. Simple random assignment was used to divide program participants into treatment and control groups. Both groups received senior kits, but the treatment group also received telephonic health coaching. The primary outcome was COVID-19 knowledge and mitigation behaviors as derived from self-reported surveys at baseline and after four months. Secondary outcomes included a telehealth or doctor visit, exercise frequency, and a loneliness score (3-Item Loneliness Scale). Health literacy was assessed using the BRIEF screening tool. Ninety-eight older adults consented to participate in the study and 87 completed the study (88.7% completion rate). Participants had moderate clinical risk, one-third preferred the Spanish language, and 52% were categorized as having inadequate or marginal health literacy. Significant changes were found for increasing COVID-19 mitigation behaviors and the frequency of exercise across the cohort, but not for COVID-19 knowledge, telehealth visits, or decreasing loneliness. Conclusions: Partnering with a trusted entity in the community is a feasible and important strategy to reach older adults during a lockdown and provide them with easy-to-read health information and resources. If the time horizon had been longer, improvements in other outcome variables may have been achieved.

I know what you did last summer: a cross-sectional study of personal COVID-19 risk reduction strategies used by Victorian adults, December 2021-January 2022.

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.

Implementation Challenges for a Multisite Advance Care Planning Pragmatic Trial: Lessons Learned.

BACKGROUND/PROBLEM: Advance care planning (ACP) pragmatic trials are needed. PROPOSED SOLUTION: We determined key system-level activities to implement ACP interventions for a cluster-randomized pragmatic trial. We identified patients with serious illness from 50 primary care clinics across three University of California health systems using a validated algorithm. If patients lacked documented ACP within the last 3 years, they were eligible for an intervention: (Arm 1) an advance directive (AD); (Arm 2) AD + PREPAREforYourCare.org; (Arm 3) AD + PREPARE + lay health navigator outreach. Triggered by an appointment, we mailed and sent interventions through automated electronic health record (EHR) messaging. We collaborated with patients/caregivers, clinicians, payors, and national/health system leader advisors. We are currently finalizing 24 months follow-up data. OUTCOMES/METHODS: We used the Consolidated Framework for Implementation Research (CFIR) and Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) frameworks to track secular trends and implementation efforts. KEY MESSAGE/RESULTS: Required multisite, system-level activities: 1) obtaining leadership, legal/privacy, and EHR approvals; 2) standardizing ACP documentation; 3) providing clinician education; 3) validating an automated serious illness identification algorithm; 4) standardizing ACP messaging with input from over 100 key advisors; 5) monitoring secular trends (e.g., COVID); and 6) standardizing ACP workflows (e.g., scanned ADs). Of 8707 patients with serious illness, 6883 were eligible for an intervention. Across all arms, 99% received the mailed intervention, 78.3% had an active patient portal (64.2% opened intervention), and 90.5% of arm three patients (n = 2243) received navigator outreach. LESSONS LEARNED: Implementing a multisite health system-wide ACP program and pragmatic trial, with automated EHR-based cohort identification and intervention delivery, requires a high level of multidisciplinary key advisor engagement, standardization, and monitoring. These activities provide guidance for the implementation of other large-scale, population-based ACP efforts.

Inclusion of Cultural and Linguistic Diversity in COVID-19 Public Health Research: Research Design Adaptations to Seek Different Perspectives in Victoria, Australia.

Participation of people from culturally and linguistically diverse (CALD) communities in public health research is often limited by challenges with recruitment, retention and second-language data collection. Consequently, people from CALD communities are at risk of their needs being marginalised in public health interventions. This paper presents intrinsic case analyses of two studies which were adapted to increase the cultural competence of research processes. Both cases were part of the Optimise study, a major mixed methods research study in Australia which provided evidence to inform the Victorian state government's decision-making about COVID-19 public health measures. Case study 1 involved the core Optimise longitudinal cohort study and Case study 2 was the CARE Victorian representative survey, an Optimise sub-study. Both case studies engaged cultural advisors and bilingual staff to adjust the survey measures and research processes to suit target CALD communities. Reflexive processes provided insights into the strengths and weaknesses of the inclusive strategies. Selected survey results are provided, demonstrating variation across CALD communities and in comparison to participants who reported speaking English at home. While in most cases a gradient of disadvantage was evident for CALD communities, some patterns were unexpected. The case studies demonstrate the challenge and value of investing in culturally competent research processes to ensure research guiding policy captures a spectrum of experiences and perspectives.

Maternal infection causes dysfunctional BCR signaling in male offspring due to aberrant Xist expression.

Infections during pregnancy with pathogens such as helminths correlate with altered immune responses to common childhood immunizations. However, the molecular mechanisms that underlie this remain unknown. Using our murine model of maternal schistosomiasis, when immunized, males from infected mothers had a lower frequency of antigen-specific germinal center B cells and downregulation of transcripts downstream of BCR signaling compared to males from uninfected mothers. This is driven by a reduction in developing B cell populations within the bone marrow of pups from infected mothers. Males from infected mothers were impacted to a greater extent than their female littermate counterparts. We found this defect to be caused by aberrant expression of the long non-coding RNA Xist in males leading to dysregulated Igα expression on developing B cells. This, for the first time, links dysfunctional BCR signaling with Xist expression, while also proposing a detrimental function for Xist expression in males.

Telephone Outreach Enhances Recruitment of Underrepresented Seriously Ill Patients for an Advance Care Planning Pragmatic Trial.

BACKGROUND: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. OBJECTIVE: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. DESIGN: Retrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. MAIN MEASURES: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). RESULTS: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). CONCLUSIONS: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.

Children and young people's experiences of living with rare diseases: An integrative review.

PROBLEM: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives. ELIGIBILITY CRITERIA: An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language. SAMPLE: Eight primary sources met the inclusion criteria. RESULTS: Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges. CONCLUSIONS: The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness. IMPLICATIONS FOR PRACTICE: To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.

An intervention to improve the self-efficacy of key workers to support parental wellbeing at an early childhood intervention service in Australia: a stepped wedged randomized cluster trial.

PURPOSE: It is well documented parents of children who have a disability are at an increased risk of poor mental health and wellbeing. A capacity building program designed to build key worker self-efficacy to support the mental health of parents accessing early childhood intervention services (ECIS) for their child was trialled. MATERIALS AND METHODS: A stepped-wedge cluster randomised trial design was utilised to deliver and evaluate a 12-month intervention program, comprising tailored professional development, resource development and sustainability measures. The repeated measurements on individuals in six clusters over three follow-up periods were analysed using linear mixed models. Comparison of the control and new program statistical means (adjusted for period effects) were assessed with an F test. RESULTS: Key workers reported increased confidence to talk to parents about their own wellbeing (d = 0.51, F(1, 51.8) = 4.28, p = 0.044) and knowledge of parental mental wellbeing improved (p = 0.006). A reduction in staff sick leave partially offset the cost of the intervention. CONCLUSIONS: A multi-pronged intervention targeted at key workers was found to be an effective way to ensure parental wellbeing is supported at an ECIS in Australia. TRIAL REGISTRATION: ACTRN12617001530314Implications for RehabilitationThere are implications for the development of children whose parents are experiencing high stress and poor mental health, whereby parents of children with disability or developmental delays are at increased risk.Findings from this study support the recommendation that a key worker is provided to holistically support families who access Early Childhood Intervention Services to aid in reducing poor parental wellbeing and child outcomes.Improved confidence to support and initiate conversations regarding parental wellbeing by key workers, in combination with support from management and the organisation to undertake this as part of their role, is a positive finding from this intervention study.

The impact of the Australian Black Summer Bushfires and the COVID-19 pandemic on wellbeing in persons with multiple sclerosis; preparation for future and ongoing crises.

PURPOSE: The Australian multiple sclerosis (MS) community experienced two recent major crises, widespread bushfires and the COVID 19 pandemic. We aimed to understand the needs of persons with MS during times of crisis. MATERIALS AND METHODS: A consumer-directed mixed-method study. We included an online survey, semi-structured interviews, and a workshop with persons with MS, carers, healthcare professionals, and disability advocates. Data were collected via: (1) 176 people completing online surveys to identify crisis concerns and communications, (2) 29 people completing online interviews on bushfire and pandemic impact, and (3) 13 people participating in a crises-priorities workshop. Descriptive data were calculated for survey response, and a general inductive analytical approach was taken with interview and workshop responses. RESULTS: The most significant concerns were bushfire smoke exposure and disease-modifying-medication and susceptibility to COVID-19 (66% and 63% mean concern score, respectively). Interviews indicated crises experiences from the bushfires, and the pandemic overlapped respective of changes in mood and symptom stability. For bushfires, a need for future preparations, and for the pandemic, the benefits of social restrictions, disclosing personal health information and increased care burden were important. CONCLUSIONS: Multiple crises challenged the MS community but offered lessons for healthcare in future crises. Continued progress in centralised crisis information, with considered use of telehealth and rural healthcare support, is needed.Implications for rehabilitationThe MS community showed high concerns for the effect of toxic smoke from the 2019/2020 Australian bushfires and, separately, for the disease-modifying-medication and susceptibility to COVID-19.The MS community placed priority on a crisis management plan for individuals.Reduced social activity due to restrictions was beneficial for MS symptom self-awareness and may help overall fatigue management.Healthcare system preparation must prepare to alleviate increased carer workload at times of crisis.

The Effectiveness of Language-Specific Personal Care Education on Improving the Knowledge and Skills of Vietnamese American In-Home Supportive Service Caregivers.

BACKGROUND: In-Home Supportive-Services (IHSS) caregivers provide personal care assistance to low-income older adults. According to the California Social Service Department, 20.2% of IHSS caregivers spoke Vietnamese in one county. The purpose of this project was to improve the knowledge and skills among these Vietnamese American caregivers by providing a language-specific and culturally appropriate education on personal care. METHODS: The project used a pre- and post-test design. Under the guidance of nursing faculty, four Vietnamese-speaking nursing students provided a 2-hr educational program on personal care (e.g., bathing, oral care) to registered Vietnamese IHSS caregivers. A pre- and post-survey was conducted. RESULTS: Overall, 55 caregivers completed the surveys. The surveys showed significant increases in confidence in knowledge and skills related to personal care topics (all ps < .001). CONCLUSION: The findings demonstrated that the cultural and language-specific education was effective in increasing knowledge and confidence of Vietnamese IHSS caregivers related to personal care for older adults.