Psychosocial and Service Delivery Impacts of the COVID-19 Pandemic on Children With Respiratory Conditions, Their Parents and Their Health Care Providers.

The COVID-19 pandemic imposed widespread impacts on the health and well-being of children with respiratory challenges and their families, as well as on the health care system that supports them. An exploratory qualitative study was undertaken to examine how the pandemic impacted families' and health care providers' daily lives and experiences of care. Four youth, 12 parents and 7 health care providers participated in interviews via telephone or online technology. Content analysis of transcribed interviews revealed participant experiences, including initial responses to the pandemic, adjustment to pandemic shifts, and anticipation of the future. While deleterious physical health impacts were minimal for children with pre-existing respiratory conditions, their mental health was negatively impacted by the pandemic and related health protocols. Families and health care providers experienced strain, yet demonstrated resilience. Pandemic-related shifts profoundly impacted daily life at home, school, and work. Pediatric pandemic planning in clinical care is recommended to better address the needs of children with respiratory conditions and their families as well as pediatric health care providers.

An ecological systems model of employee experience in industry-led autism employment programmes.

LAY ABSTRACT: We asked 33 autistic adults from two industry-led employment programmes about their experiences in the programmes. These are programmes started by companies to recruit and support autistic people in work. We also asked about their workplace supports, relationships and how they thought the programme had impacted their life. Understanding the experiences of people in these industry-led employment programmes is important as the information can help to improve the programmes and participants' experiences. After reviewing the interviews, we found five themes that best described the employee's experience: (1) working involves multiple job tasks that evolve as the employment context changes; (2) relationships in the workplace are diverse and are influenced by the type of work participants do and the work environment; (3) workplace needs change as the autistic employees learn to navigate their work environment; (4) autistic employees develop a professional identity in the workplace as they master work and feel more integrated in the workplace; and (5) recommendations for the development of supportive workplace environments for autistic people. We explored the way that aspects of the two employment programmes (e.g. training) and factors outside the programme changed with time and contributed to the participant's experience. We developed a new model to capture individual and workplace factors that contribute to the experience of autistic people who participate in industry employment programmes.

Autistic Perspectives on Employment: A Scoping Review.

PURPOSE: Inclusive recruitment and employment of autistic adults has garnered recent attention in research and policy. To address a need to better understand the experiences of autistic adults in relation to paid employment, we asked the literature, what are the experiences of autistic individuals (from their perspectives) in competitive employment? METHODS: A scoping review was conducted to summarize and consolidate the findings across research to date. A systematic search and screen of the literature resulted in 32 relevant studies. FINDINGS: Key study characteristics, participant demographics, and thematic findings are shared, along with considerations and recommendations for future research and practice. Six key themes were described by autistic participants across the 32 studies: (1) accessibility of employment, (2) workplace relationships and communication, (3) role alignment, (4) sensory needs and/or mental health, (5) colleagues' knowledge and beliefs about autism, and (6) family and community context. CONCLUSION: It is anticipated that the results of this review will be beneficial for stakeholders engaging in discussions and decision-making across research and employment contexts.

The mediating role of caregiver hope in relations among caregivers' coping and emotional socialization beliefs in pediatric oncology.

The purpose of this study is to identify links between caregiver hope, caregiver coping behaviors, and caregivers' coaching versus dismissing emotion socialization (ES) beliefs in a pediatric cancer sample.Self-report measures.Caregivers (N = 183, 80.20% mothers; 58.5% white; 32.2% Hispanic) of youth undergoing cancer treatment (51.10% hematological malignancy, 15.30% brain or spinal [CNS] tumor, and 25.14% non-CNS solid tumor) for at least six weeks.We used a series of mediation models to examine links between caregivers' coping behaviors, hope, and ES beliefs.Caregivers' hope significantly mediated a positive relation between caregivers' coping and their emotion coaching beliefs, as well as an inverse relation between caregivers' maladaptive coping and their emotion dismissing beliefs.Enhancing caregivers' hope or adaptive coping may support caregivers' beliefs during the pediatric cancer experience.Our findings support future research to evaluate whether enhancing caregivers' hope or adaptive coping may help support evidence-based interventions that target ES beliefs and behaviors.

Facilitators and barriers in psychotherapy from the perspective of autistic adults: an enhanced critical incident study.

PURPOSE: A significant portion of autistic adults experience mental health challenges. Currently, the literature is incomplete when it comes to understanding the needs and preferences of autistic adults who receive therapy. This study elicited the perspectives of autistic adults, focusing on the facilitators, barriers and ways to enhance psychotherapy based on receiving this care for mental health problems. METHODS: Using the qualitative, exploratory approach of the Enhanced Critical Incident Technique, eight autistic adults took part in interviews. RESULTS: A total of 147 critical incidents were extracted from participant interviews and categories salient to therapeutic practice. The study identified key factors influencing therapy, such as trust and respect, practical approaches, client factors, structure of sessions, knowledge about autism, support for individualized needs, access to mental health services, and involvement of family/advocate. These factors were categorized into eight main areas relevant to therapeutic practice. CONCLUSIONS: Findings from this research reveal that psychotherapy with autistic adults is analogous to performing this work with non-autistic adults, in the sense that this work too entails elements of individually tailored treatment and the reliance on common therapeutic factors. There are also differences in this work that necessitate providers having foundational knowledge about autism. Learning directly from autistic adults' insights may help to improve upon the delivery of mental health care for autistic adults.

Mental Health Providers' Perspectives on What Helps and Hinders in Psychotherapy for Autistic Adults with Co-occurring Mental Health Problems.

Autistic adults experience disproportionate rates of co-occurring mental health problems. Psychotherapy has been recognized as an appropriate treatment approach, but evidence is limited. Researchers used a qualitative research paradigm to explore the experiences of mental health providers who provide psychotherapy to autistic adults. The Enhanced Critical Incident Technique was used to interview 13 mental health providers regarding perceptions of facilitating therapy with autistic adults. This research highlights challenges to providing psychotherapy to autistic adults while also illuminating ways that mental health providers have worked to ameliorate such challenges and create positive experiences in therapy. This research also contrasts therapy for autistic adults relative to the general population. Practice recommendations and suggestions for future research are offered.

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic.

BACKGROUND: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. METHODS: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. RESULTS: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. CONCLUSION: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.

Mobile Health Solutions for Prostate Cancer Diagnostics-A Systematic Review.

Prostate cancer, the most common cause of cancer in men in the UK and one of the most common around the world to date, has no consensus on screening. Multiple large-scale trials from around the world have produced conflicting outcomes in cancer-specific and overall mortality. A main part of the issue is the PSA test, which has a high degree of variability, making it challenging to set PSA thresholds, as well as limited specificity. Prostate cancer has a predisposition in men from black backgrounds, and outcomes are worse in men of lower socioeconomic groups. Mobile targeted case finding, focusing on high-risk groups, may be a solution to help those that most need it. The aim of this systematic review was to review the evidence for mobile testing for prostate cancer. A review of all mobile screening studies for prostate cancer was performed in accordance with the Cochrane guidelines and the PRISMA statement. Of the 629 unique studies screened, 6 were found to be eligible for the review. The studies dated from 1973 to 2017 and came from four different continents, with around 30,275 men being screened for prostate cancer. Detection rates varied from 0.6% in the earliest study to 8.2% in the latest study. The challenge of early diagnosis of potentially lethal prostate cancer remains an issue for developed and low- and middle-income countries alike. Although further studies are needed, mobile screening of a targeted population with streamlined investigation and referral pathways combined with raising awareness in those communities may help make the case for screening for prostate cancer.

Benefits of expanding behavioral health screening in a pediatric diabetes clinic to include anxiety and caregiver reports in youth 12 years and younger.

INTRODUCTION: Depression and anxiety among youth with Type 1 diabetes (T1D) are associated with poor diabetes management. Further guidance regarding psychosocial screening measures would benefit pediatric integrated care clinics. The purpose of this exploratory study was to examine whether screening for anxiety, assessing caregiver reports, and screening children 12 years old and younger could identify a larger percentage of youth who may benefit from behavioral health support compared to the standard approach of only screening youth 13 and older for depression. METHOD: Sixty-five youth 8-17 years old with T1D (N = 65; M = 13.2 years; 55.4% females) and their caregivers (75% mothers) completed validated self-report and proxy-report depression and anxiety screeners during routine clinic visits between 2019 and 2021. Twenty-seven youth aged 13-17 also completed a measure of diabetes-related distress. RESULTS: The standard approach of screening youth aged 13-17 for depression via self-report identified 25.6% of participants, whereas screening youth ages 8-17 for depression and anxiety via self- and proxy-reports identified 47.7%. Screening for depression/anxiety identified unique portions of youth independent of diabetes distress. DISCUSSION: Utilizing anxiety and proxy-report measures may identify youth likely to benefit from behavioral health support who are not identified when only a self-report depression measure is used in screening. Research should evaluate whether utilizing multiple measures and screening children under 13 years old improve detection and connection to care for youth experiencing difficulty managing diabetes. Early identification and intervention could subsequently mitigate the negative impacts of social-emotional difficulties on diabetes management. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Indigenous Autism in Canada: A Scoping Review.

Currently there is a severe lack of research on autism and Indigenous people in Canada. This scoping review explores this literature gap and assesses the same literature from an Indigenous perspective. Scoping reviews are an effective means to explore the literature in a specific area, in this case, autism and Indigenous people in Canada. We explored existing literature as it pertains to Indigenous populations and autism in Canada. To support this review, the Indigenous Quality Assessment Tool (QAT) was adapted to appraise the quality of literature. In total, there were a total of 212 articles identified of which 24 met the inclusion criteria: (1) some focus on autism, (2) a component specific to Indigenous people, and (3) specific to Canada. Of the 24 articles and reports, 15 were peer-reviewed and the rest considered grey literature. Most articles focused on program delivery with some literature using primary data (quantitative and/or qualitative). Overall, the quality of the research was appraised as poor, as determined by the QAT. Findings reaffirm the critical need for research that addresses autism in Indigenous communities within Canada and show the importance of having research done in full partnership with, or led by, Indigenous people.

Exploring the lived experience of patients and families who speak language other than English (LOE) for healthcare: developing a qualitative study.

BACKGROUND: Patients who use Languages other than English (LOE) for healthcare communication in an English-dominant region are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in pediatric hospitals. Despite the knowledge that individuals who speak LOE have worse health outcomes, they are often excluded from research studies on the basis of language and there is a paucity of data on ways to address these known disparities. Our work aims to address this gap by generating knowledge to improve health outcomes for children with illness and their families with LEP. BODY: We describe an approach to developing a study with individuals marginalized due to using LOE for healthcare communication, specifically using semi-structured qualitative interviews. The premise of this study is participatory research-our overall goal with this systematic inquiry is to, in collaboration with patients and families with LOE, set an agenda for creating actionable change to address the health information disparities these patients and families experience. In this paper we describe our overarching study design principles, a collaboration framework in working with different stakeholders and note important considerations for study design and execution. CONCLUSIONS: We have a significant opportunity to improve our engagement with marginalized populations. We also need to develop approaches to including patients and families with LOE in our research given the health disparities they experience. Further, understanding lived experience is critical to advancing efforts to address these well-known health disparities. Our process to develop a qualitative study protocol can serve as an example for engaging this patient population and can serve as a starting point for other groups who wish to develop similar research in this area. Providing high-quality care that meets the needs of marginalized and vulnerable populations is important to achieving an equitable, high-quality health care system. Children and families who use a Language other than English (LOE) in English dominant regions for healthcare have worse health outcomes including a significantly increased risk of experiencing adverse events, longer lengths of stay in hospital settings, and receiving more unnecessary tests and investigations. Despite this, these individuals are often excluded from research studies and the field of participatory research has yet to meaningfully involve them. This paper aims to describe an approach to conducting research with a marginalized population of children and families due to using a LOE. We detail protocol development for a qualitative study exploring the lived experiences of patients and families who use a LOE during hospitalization. We aim to share considerations when conducting research within this population of families with LOE. We highlight learning applied from the field of patient-partner and child and family-centred research and note specific considerations for those with LOE. Developing strong partnerships and adopting a common set of research principles and collaborative framework underlies our approach and initial learnings, which we hope spark additional work in this area.

Associations between hearing loss and clinical outcomes: population-based cohort study.

Background: Hearing loss (HL) is a leading cause of disability worldwide, but its clinical consequences and population burden have been incompletely studied. Methods: We did a retrospective population-based cohort study of 4,724,646 adults residing in Alberta between April 1, 2004 and March 31, 2019, of whom 152,766 (3.2%) had HL identified using administrative health data. We used administrative data to identify comorbidity and clinical outcomes, including death, myocardial infarction, stroke/transient ischemic attack, depression, dementia, placement in long-term care (LTC), hospitalization, emergency visits, pressure ulcers, adverse drug events and falls. We used Weibull survival models (binary outcomes) and negative binomial models (rate outcomes) to compare the likelihood of outcomes in those with vs without HL. We calculated population-attributable fractions to estimate the number of binary outcomes associated with HL. Findings: The age-sex-standardized prevalence of all 31 comorbidities at baseline was higher among participants with HL than those without. Over median follow-up of 14.4 y and after adjustment for potential confounders at baseline, participants with HL had higher rates of days in hospital (rate ratio 1.65, 95% CI 1.39, 1.97), falls (RR 1.72, 95% CI 1.59, 1.86), adverse drug events (RR 1.40, 95% CI 1.35, 1.45), and emergency visits (RR 1.21, 95% CI 1.14, 1.28) compared to those without, and higher adjusted hazards of death, myocardial infarction, stroke/transient ischemic attack, depression, heart failure, dementia, pressure ulcers and LTC placement. The estimated number of people with HL who required new LTC placement annually in Canada was 15,631, of which 1023 were attributable to HL. Corresponding estimates for new dementia among people with HL were 14,959 and 4350, and for stroke/TIA the estimates were 11,582 and 2242. Interpretation: HL is common, is often accompanied by substantial comorbidity, and is associated with significant increases in risk for a broad range of adverse clinical outcomes, some of which are potentially preventable. This high population health burden suggests that increased and coordinated investment is needed to improve the care of people with HL. Funding: Canadian Institutes of Health Research; David Freeze chair in health services research.

Robotic Arthroplasty Clinical and cost Effectiveness Randomised controlled trial (RACER-knee): a study protocol.

INTRODUCTION: Robotic-assisted knee replacement systems have been introduced to healthcare services worldwide in an effort to improve clinical outcomes for people, although high-quality evidence that they are clinically, or cost-effective remains sparse. Robotic-arm systems may improve surgical accuracy and could contribute to reduced pain, improved function and lower overall cost of total knee replacement (TKR) surgery. However, TKR with conventional instruments may be just as effective and may be quicker and cheaper. There is a need for a robust evaluation of this technology, including cost-effectiveness analyses using both within-trial and modelling approaches. This trial will compare robotic-assisted against conventional TKR to provide high-quality evidence on whether robotic-assisted knee replacement is beneficial to patients and cost-effective for healthcare systems. METHODS AND ANALYSIS: The Robotic Arthroplasty Clinical and cost Effectiveness Randomised controlled trial-Knee is a multicentre, participant-assessor blinded, randomised controlled trial to evaluate the clinical and cost-effectiveness of robotic-assisted TKR compared with TKR using conventional instruments. A total of 332 participants will be randomised (1:1) to provide 90% power for a 12-point difference in the primary outcome measure; the Forgotten Joint Score at 12 months postrandomisation. Allocation concealment will be achieved using computer-based randomisation performed on the day of surgery and methods for blinding will include sham incisions for marker clusters and blinded operation notes. The primary analysis will adhere to the intention-to-treat principle. Results will be reported in line with the Consolidated Standards of Reporting Trials statement. A parallel study will collect data on the learning effects associated with robotic-arm systems. ETHICS AND DISSEMINATION: The trial has been approved by an ethics committee for patient participation (East Midlands-Nottingham 2 Research Ethics Committee, 29 July 2020. NRES number: 20/EM/0159). All results from the study will be disseminated using peer-reviewed publications, presentations at international conferences, lay summaries and social media as appropriate. TRIAL REGISTRATION NUMBER: ISRCTN27624068.

Examining the experiences of pediatric mental health care providers during the early stage of the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic fundamentally impacted the way that mental health services were provided. In order to prevent the spread of infection, many new public health precautions, including mandated use of masks, quarantine and isolation, and closures of many in-person activities, were implemented. Public health mandates made it necessary for mental health services to immediately shift their mode of delivery, creating increased confusion and stress for mental health providers. The objective of this study is to understand the impact of pandemics on the clinical and personal lives of mental health providers working with children during the early months of the COVID-19 pandemic, March -June 2020. METHODS: Mental health providers (n = 98) were recruited using purposive sampling from a public health service in Canada. Using qualitative methods, semi-structured focus groups were conducted to understand the experiences of mental health service providers during the beginning of the COVID-19 pandemic. RESULTS: Data from the focus groups were analysed and three main themes emerged: (1) shift to virtual delivery and working from home; (2) concerns about working in person; (3) exhaustion and stress from working through the pandemic. DISCUSSION: This study gave voice to mental health providers as they provided continuity of care throughout the uncertain early months of the pandemic. The results provide insight into the impact times of crisis have on mental health providers, as well as provide practical considerations for the future in terms of supervision and feedback mechanisms to validate experiences.

New Zealand Youth Rugby Sevens: A Comparative Match Demands Study.

Rugby sevens has established itself on the world stage since its inclusion in the 2016 Olympics. Participation among New Zealand (NZ) youth has surged. Sevens games have specific high demands, but little is known about these competitive demands in regards to youth. Two NZ male youth squads (U15, n = 13; U19, n = 14) were monitored during a national sevens tournament. Microsensor technology captured heart rate (HR) and kinematic performance. The rating of perceived exertion (RPE) was collected for U15 matches only. U19 and U15 players ran 108 ± 11 and 116 ± 13 m·min-1 at an average speed (VAVG) of 6.5 ± 0.6 and 6.9 ± 0.8 km·h-1. Peak speeds (VPEAK) reached 33.7 km·h-1, and high-intensity running distance (HIRD) averaged 252 ± 102 m. U15 (44.3 ± 9.2 game-1) and U19 (39.4 ± 6.1 game-1) showed different sprint rates. U15 covered more moderate-velocity distance (20-80% VMAX) and less low-velocity distance (<20% VMAX). RPE was 13 ± 1 (U15). An average HR of 90.0 ± 3.9% HRMAX was recorded. Upwards of 57% of game time was played at >95% HRMAX. Youth sevens competition is specifically demanding. U15 can experience greater loads than older peers in rugby. Coaches can use this information to optimize players' physical development.

Development of an Empirically Derived Measure of Food Safety Culture in Restaurants.

A poor food safety culture has been described as an emerging risk factor for foodborne illness outbreaks, yet there has been little research on this topic in the retail food industry. The purpose of this study was to identify and validate conceptual domains around food safety culture and develop an assessment tool that can be used to assess food workers' perceptions of their restaurant's food safety culture. The study, conducted from March 2018 through March 2019, surveyed restaurant food workers for their level of agreement with 28 statements. We received 579 responses from 331 restaurants spread across eight different health department jurisdictions. Factor analysis and structural equation modeling supported a model composed of four primary constructs. The highest rated construct was Resource Availability (x¯=4.69, sd=0.57), which assessed the availability of resources to maintain good hand hygiene. The second highest rated construct was Employee Commitment (x¯=4.49, sd=0.62), which assessed workers' perceptions of their coworkers' commitment to food safety. The last two constructs were related to management. Leadership (x¯=4.28, sd=0.69) assessed the existence of food safety policies, training, and information sharing. Management Commitment (x¯=3.94, sd=1.05) assessed whether food safety was a priority in practice. Finally, the model revealed one higher-order construct, Worker Beliefs about Food Safety Culture (x¯=4.35, sd=0.53). The findings from this study can support efforts by the restaurant industry, food safety researchers, and health departments to examine the influence and effects of food safety culture within restaurants.

The pandemic and changes in early career researchers' career prospects, research and publishing practices.

INTRODUCTION: As part of the Harbnger-2 project, this study aimed to discover the impact of the COVID-19 pandemic on junior researchers' work-life, career prospects, research and publishing practices and networking. METHODS: An online international survey of 800 early career researchers (ECRs) was conducted in 2022. A questionnaire was developed based on three rounds of interviews and distributed using multiple channels including publishers, social media, and direct email to ECRs. RESULTS: The impact of the pandemic on career prospects, morale, job security, productivity, ability to network and collaborate, and quality and speed of peer review has on the whole been more negative than positive. A quarter of ECRs shifted their research focus to pandemic-related topics and half of those who did, benefited largely due to increased productivity and impact. The majority worked remotely/from home and more than two-thirds of those who did so benefitted from it. While virtual or hybrid conferences have been embraced by the majority of ECRs, around a third still preferred face-to-face only conferences. The use of library online platforms, Sci-Hub, ResearchGate, Google Scholar and smartphone to search and access full-text papers increased. ECRs prioritised journals with fast submission procedures for the publishing of their papers and spent more time on increasing the visibility of their research. Fees were a problem for publishing open access. CONCLUSION: Although, generally, the pandemic negatively impacted many aspects of ECRs' work-life, certain research areas and individuals benefited from being more appreciated and valued, and, in some cases, resulted in increased resources, better productivity and greater impact. Changes, such as the use of digital technologies and remote working created new opportunities for some ECRs. While continuing work flexibility and hybrid conferences might benefit some ECRs, institutions should also take measures to help those ECRs whose career and productivity have been adversely impacted.

Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study.

BACKGROUND: At present, little is known about the factors that contribute to the relatively low uptake of government-funded disability programs in Canada. AIM: Understand how parents/caregivers of Canadian youth with neurodevelopmental disability (NDD) experience the process of applying for and accessing disability programs. METHODS AND PROCEDURES: This mixed methods sequential explanatory study utilized two phases: an online survey (quantitative), followed by semi-structured interviews (qualitative). The quantitative phase gathered sociodemographic information and preliminary information about participant experiences applying for and accessing programs. The qualitative phase provided greater depth by asking participants to describe barriers and facilitators to program access. OUTCOMES AND RESULTS: 499 participants completed the online survey and 81 participants completed an interview. Analysis of survey data revealed that many participants are not accessing disability programs and experience difficulty when applying. Regression analyses revealed that factors relating to the process of applying and applicant/family attributes are significantly associated with program access. Inductive thematic analysis of interview data revealed four barriers and three facilitators to access. Integration of findings provided an overview of the multi-faceted journey to program access. CONCLUSIONS AND IMPLICATIONS: The results of this study highlight policy changes that are needed to ensure disability programs adequately support Canadian families.

Impacts of the COVID-19 Pandemic: Pan-Canadian Perspectives From Parents and Caregivers of Youth With Neurodevelopmental Disabilities.

INTRODUCTION: The COVID-19 pandemic brought unprecedented challenges for youth with neurodevelopmental disabilities (NDD) and their families. Although health measures were implemented to contain the COVID-19 virus, they disrupted public service, profoundly impacting youth and their families' access to services. This study sought to better understand the perspectives and experiences of parents and caregivers of youth with NDD across Canada in accessing services and their mental health needs during the pandemic. METHOD: The study used a qualitative research design in which we interviewed 40 parents and caregivers across Canada. RESULTS: The results enabled us to understand the impact of service disruptions in significant areas of life, including health, education, employment, and risk mitigation. DISCUSSION: Policymakers must consider a disability-inclusive lens during public health emergency planning and response to reduce the disproportionate impacts faced by youth with NDD and their families.