Promoting Resilience in Direct Support Professionals of Adults With Intellectual and Developmental Disabilities: A Qualitative Descriptive Study.

The direct support professional (DSP) workforce shortage crisis has reached untenable levels during the COVID-19 pandemic as DSPs rapidly exit the workforce. To gain a better understanding of factors that contribute to DSP resilience during stressful and challenging times, we interviewed 10 DSPs identified by colleagues as resilient to elicit strategies to promote DSP resilience. Our content analysis revealed nine distinct strategies: (a) communication; (b) self-worth and recognition; (c) authentic, equitable relationships; (d) embracing change and learning; (e) establishing and maintaining boundaries; (f) cultivating an intentional mindset; (g) self-care; (h) spirituality/"the bigger picture"; and (i) a daily practice of humor and fun.

Zihinsel Yetersizli?i Olan 0-18 Ya? Aras? ?ocuk ve Ad?lesanlar?n Ebeveynlerinin A??ya Kar?? Tutumlar? Attitudes of the Parents of Children and Adolescents Aged 0-18 with Intellectual Disability to Vaccine

Objective: Studies have shown that individuals with disabilities participate in routine immunization programs less than individuals without any disabilities. This study was carried out to explore the attitudes of parents of children and adolescents aged 0-18 years with an intellectual disability towards vaccination before the COVID-19 pandemic.Material and Methods: This descriptive study was conducted with the parents of 94 children and adolescents aged 0-18 years who were educated in a special training center in Izmir. Socio-demographic Questionnaire and Attitudes towards Vaccination Scale were used as data collection tools for the study. Attitudes towards Vaccine Scale has been developed by Cvjetkovic et al. Ethics approval was obtained from the Izmir Katip celebi University Non-Invasive Clinical Research Ethics Committee, and institutional approval was obtained from the institution administration. Results:The rate of parents who stated that they believed that vaccines had serious side effects was 73.4%. The rate of families who had never been vaccinated and thought that the vaccines were ineffective was 14.9%. The parents' total ATVS median score was 43 and they displayed a moderately positive attitude. Those who believed that "vaccines have serious side effects" had the lowest median ATVS score (p< 0.005). Median ATVS scores of fully vaccinated parents were higher than those of the parents who did not have any vaccinations and who had incomplete vaccination, and they displayed a more positive attitude (p< 0.005). According to the parents' sources of information, ATVS scores were compared (p< 0.005), and the median ATVS scores of those who received information from healthcare personnel were higher than those of the parents who received information from other sources (p< 0.005). Conclusion: In this study, while 14.9% of the parents of children and adolescents with intellectual disabilities reported that they did not get their children vaccinated, 85.1% got their children vaccinated. Children and adolescents with intellectual disabilities have higher health risks due to various reasons such as the inadequacy of health protection and improvement programs, and therefore, they should be among the priority groups in immunization.

It's not all doom and gloom: What the pandemic has taught us about digitally inclusive practices that support people with learning disabilities to access and use technologies

Background: The aim of this study was to examine whether and how people with learning disabilities were being supported to use technologies to keep connected and stay well during the pandemic. Methods: Thirty‐eight people in a range of support roles were interviewed about their experiences of trying to support people with learning disabilities to use technologies during the pandemic with a particular focus on the difficulties experienced by learning disabilities and the practices that supporters developed to try to overcome these difficulties. Findings: Findings revealed examples of digital exclusion, where people with learning disabilities were not able to use technology. The three main barriers to digital inclusion were cost, access and environment. The findings also revealed examples of digital inclusion, where those in support roles worked to overcome these barriers. These digitally inclusive support practices can be characterised as 'possibility focused'. Possibility focused support has four key components: creativity, resilience, risk‐management and shared decision‐making. Conclusion: The pandemic has shown us that it is important to support people with learning disabilities to use technologies. It is important that we learn from the experiences of those supporters who helped people with learning disabilities access and use technologies during the pandemic, so that digitally inclusive support practice is shared more widely and more people with learning disabilities are supported to be digitally included beyond the pandemic. Accessible summary: During the pandemic when we had to stay at home, being able to use technology to keep connected with friends and family was very important.I wanted to find out if people with learning disabilities were getting the support they needed to use technology during the pandemic.I asked 38 'supporters' about their experiences of trying to help people with learning disabilities use technology during the pandemic.I found that there were three main barriers to using technology: cost, access and environment.I also found examples where 'supporters' had been able to help people with learning disabilities overcome these barriers and use technologies.

A Catholic Christian understanding of autism spectrum disorder and grief within the funeral setting

Attending the funeral of a loved one offers bereaved individuals the opportunity to say goodbye to the deceased, providing closure to the grieving loved one and concretizing the deceased's death. Within the Catholic-Christian tradition, the funeral rite is seen as an act of worship, a part of the more powerful story of salvation. Within this belief system, the funeral rite represents the deceased loved one's soul returning to God in the afterlife. It is a way to thank God for the endless mercy He has shown His children on Earth. Under the helpful guidance and expertise of funeral directors, funeral proceedings allow family and friends to grieve the loss of their loved one, surrounded by a community of prayer and support, which can provide a step toward healing. However, certain groups of individuals are commonly deprived of the opportunity to participate in or attend the funeral of a loved one. People in the autism community can fall into this category, as their grief is often disenfranchised. Their experience of disenfranchised grief can be problematic, as excluding these individuals from the funeral service may impact their grief and mourning process. Because grief reactions within people with autism are understudied, little is known as how to adequately address the needs of these individuals at the funeral of a loved one. Also, many funeral directors do not receive formal training on how to work with people with autism. Thus, they may not be aware of the extra support that individuals with autism may need when attending a funeral service.Therefore, through the lens of Catholic-Christian integration, this dissertation seeks to examine how grief manifests within people with autism more fully. Specifically, this dissertation examines the role that funeral attendance may play in their grief processes. Moreover, using archival data from a pilot study, a training program for funeral directors will be examined for its effectiveness. Furthermore, interview data from professionals in the field of autism and grief will be analyzed and discussed. Combining a thorough literature review of the topic with data from professionals in the field, this dissertation aims to better understand how grief manifests within this population, specifically as it relates to funeral attendance. Throughout the dissertation, the need for grief studies and interventions within the autism community will be highlighted, especially during this time of increased death and subsequent grief and mourning due to the COVID-19 pandemic. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

The remarkable journey of one female individual with ornithine transcarbamylase deficiency diagnosed post-mortem.

Urea cycle disorders (UCDs) comprise a group of inborn errors of metabolism with impaired ammonia clearance and an incidence of ~1:35 000 individuals. First described in the 1970s, the diagnosis and management of these disorders has evolved dramatically. We report on a 59-year-old woman with a UCD who contributed to advances in the understanding and treatment of this group of disorders. This individual was diagnosed with carbamoyl phosphate synthetase 1 deficiency based on a biochemical assay under a research context predating genetic sequencing, treated longitudinally as having this metabolic disorder, and was among the first participants to trial UCD pharmaceutical therapies. She ultimately succumbed to a SARS-CoV-2 infection while maintaining unexpectedly normal ammonium levels. Postmortem genetic testing revealed ornithine transcarbamylase deficiency. This individual's contributions to the field of UCDs is discussed herein.

Attitudes of the Parents of Children and Adolescents Aged 0-18 with Intellectual Disability to Vaccine

Objective: Studies have shown that individuals with disabilities participate in routine immunization programs less than individuals without any disabilities. This study was carried out to explore the attitudes of parents of children and adolescents aged 0-18 years with an intellectual disability towards vaccination before the COVID-19 pandemic. Material(s) and Method(s): This descriptive study was conducted with the parents of 94 children and adolescents aged 0-18 years who were educated in a special training center in Izmir. Socio-demographic Questionnaire and Attitudes towards Vaccination Scale were used as data collection tools for the study. Attitudes towards Vaccine Scale has been developed by Cvjetkovic et al. Ethics approval was obtained from the Izmir Katip Celebi University Non-Invasive Clinical Research Ethics Committee, and institutional approval was obtained from the institution administration. Result(s): The rate of parents who stated that they believed that vaccines had serious side effects was 73.4%. The rate of families who had never been vaccinated and thought that the vaccines were ineffective was 14.9%. The parents' total ATVS median score was 43 and they displayed a moderately positive attitude. Those who believed that "vaccines have serious side effects" had the lowest median ATVS score (p< 0.005). Median ATVS scores of fully vaccinated parents were higher than those of the parents who did not have any vaccinations and who had incomplete vaccination, and they displayed a more positive attitude (p< 0.005). According to the parents' sources of information, ATVS scores were compared (p< 0.005), and the median ATVS scores of those who received information from healthcare personnel were higher than those of the parents who received information from other sources (p< 0.005). Conclusion(s): In this study, while 14.9% of the parents of children and adolescents with intellectual disabilities reported that they did not get their children vaccinated, 85.1% got their children vaccinated. Children and adolescents with intellectual disabilities have higher health risks due to various reasons such as the inadequacy of health protection and improvement programs, and therefore, they should be among the priority groups in immunization.Copyright © 2023 by Pediatric Infectious Diseases and Immunization Society.

Using Gamification to Motivate Students with Simple-Moderate Intellectual Disabilities

By the spread of COVID-19, the entire world shifted suddenly to e-learning including schools. This study aims to find ways to enjoy teaching. Gamification in education refers to the introduction of game elements in non-game environment. A case study was adopted for this study as a qualitative approach to investigate the possibility of improving motivation. The study was conducted in the first and second semester of the 2020/2021. The sample consists of (6) participants of pre-services teachers studying in special education course for 15 weeks. Data were collected through semi-structured interviews. The result of the interview showed that there is a clear desire among the students to succeed during learning using game elements. Their desire is very clear and higher. Most of them became active during their learning. They enjoyed learning in gamified learning environment. The researchers recommended that the Ministry of Education should train teachers to employ game elements to motivate their students. © 2023 The Author(s).

The Assessment of Intelligence: What is Behind Us, Before Us and Ahead of Us

Scholars struggle to define intelligence, despite over a century of research on this topic. The definition of intelligence, and consequently its utility, depends on the theoretical orientation of the clinician or researcher. In this chapter, we briefly review the origins and development of intelligence testing and current theories of intelligence. We adopt a clinical neuropsychological perspective and explore the clinical applications of intellectual assessment today, as guided by the extant literature. We challenge the notion that intelligence exists as a unified construct that can be defined by a single score, and we explore the implications and limitations through a cultural lens. Finally, we discuss the future of intellectual assessment in the COVID-era and beyond. © 2022 Elsevier Ltd. All rights reserved

International Nursing Actions to Reduce Health Inequities Faced by People with Intellectual andDevelopmental Disability

The impact of the COVID-19 pandemic highlighted health inequities for people with intellectual and developmental disability (PWIDD). It was alsothe stimulus for an international group of nurse researchers with shared expertise and experience to create a Global IDD Nursing Collaboratory. Acollaboratory is a networked environment or "center without walls” where interaction oriented to common research areas occur without regard tophysical location. The overarching goal of this Global Nursing Collaboratory is to assure the highest quality of life for PWIDD across the lifespan.Applying their unique skills and expertise, nurses working across health and social contexts are often the bridge over the healthcare gapsencountered by PWIDD. This paper describes the potential practice, education, and research contributions nurses can make to reduce healthinequities experienced by PWIDD. We will examine how we talk about disability, the impact of the current COVID 19 crisis, and our educationalsystems which in some countries leave nurses and other health professionals ill prepared to meet the unique needs of this population We willdescribe the context, access issues, and health service organizations for and with PWIDD across countries to equip nurses with basic knowledge ofhealth care for PWIDD and energize meaningful improvement in delivery of this care. Importantly, we offer action steps for all nurses towardreducing stigma and health inequities related to living with an intellectual and developmental disability (IDD). © 2022,Online Journal of Issues in Nursing. All Rights Reserved.

An update of the reported effects of the COVID-19 pandemic on person with intellectual disability and their carers: a scoping review.

BACKGROUND: The effects of the COVID-19 pandemic has been felt by all groups in society and people with intellectual disability are especially vulnerable due to underlying conditions/health problems, multi-morbidity, limitations in understanding, frailty and social circumstances. This places people with intellectual disability, their families and carers at increased risk of stress and in need of support. OBJECTIVE: To update and chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability, their families and carers reported within the research in 2021. METHODS: A scoping review of research published in 2021 across 7 databases. RESULTS: 84 studies met the inclusion criteria, and the findings highlight people with intellectual disability are at a greater risk to COVID-19 health outcomes due to underlying health concerns and access issues. The effects of COVID-19 can be seen from a personal, social and health perspective for people with intellectual disability, their carers and families. However, COVID-19 did have some unanticipated benefits such as: less demand on time, greater opportunity to engage with people of value and building resilience. CONCLUSIONS: COVID-19 presents many challenges but for people with intellectual disability compounding existing obstacles encountered in access issues, service provision and supports available. There is a need to identify and describe the experiences of people with intellectual disability, their families and carers in the medium-long term during COVID-19. Greater supports and evidence of effective interventions to promote health, deliver services and support individual with intellectual disability is needed as there is little evidence of clinical care for people with intellectual disability during COVID-19.

During pandemics the perspectives of people with intellectual disability, their carers and service providers are central to addressing systemic health care inequalities and poor-quality person-centred care.Greater collaboration is needed to learn from pandemics in terms of health and social care policy improvements.There remains a need for large scale studies that are representative of the broad spectrum of the intellectual disability population and examine Long-COVID in this group of people.

Exploring Turkish parents' lived experiences on online science lessons of their children with mild intellectual disability amid the COVID-19 pandemic.

Background: The purpose of this qualitative study was to explore Turkish parents' lived experiences on online science lessons of their children with mild intellectual disability amid COVID-19 pandemic. Method: This study used the phenomenological qualitative research design. Participants in this study were 16 parents, who have children with mild intellectual disability and participated in one-on-one semi-structured phone calls. Interview data were thematically analyzed. Result: Five overarching themes were found: (1) parents' general experiences on online science lessons, (2) advantages of online science lessons, (3) disadvantages of online science lessons, (4) barriers in online science lessons, and (5) parents' recommendations for online science lessons. Conclusion: The results revealed that the majority of parents agreed on the school closure policy due to the COVID-19 pandemic, but were not satisfied with the online science lessons, and focused on the disadvantages of online science lessons for their children with mild intellectual disability.

Standing up for Myself (STORM): Adapting and piloting a web-delivered psychosocial group intervention for people with intellectual disabilities.

BACKGROUND: Our STORM intervention was developed for people (16 +) with intellectual disabilities to enhance their capacity to manage and resist stigma. The current study describes the adaptation of STORM for (synchronous) on-line delivery in the context of the Covid-19 pandemic. AIMS: To adapt the manualised face-to-face STORM group intervention for delivery via web-based meeting platforms and to conduct an initial pilot study to consider its acceptability and feasibility. METHODS AND PROCEDURES: The 5-session STORM intervention was carefully adapted for online delivery. In a pilot study with four community groups (N = 22), outcome, health economics and attendance data were collected, and fidelity of delivery assessed. Focus groups with participants, and interviews with facilitators provided data on acceptability and feasibility. OUTCOMES AND RESULTS: The intervention was adapted with minimal changes to the content required. In the pilot study, 95% of participants were retained at follow-up, 91% attended at least three of the five sessions. Outcome measure completion and fidelity were excellent, and facilitators reported implementation to be feasible. The intervention was reported to be acceptable by participants. CONCLUSIONS AND IMPLICATIONS: When provided with the necessary resources and support, people with intellectual disabilities participate actively in web-delivered group interventions.

Innovating Therapies for Down Syndrome: An International Virtual Conference of the T21 Research Society.

Research focused on Down syndrome continued to gain momentum in the last several years and is advancing our understanding of how trisomy 21 (T21) modifies molecular and cellular processes. The Trisomy 21 Research Society (T21RS) is the premier scientific organization for researchers and clinicians studying Down syndrome. During the COVID pandemic, T21RS held its first virtual conference program, sponsored by the University of California at Irvine, on June 8-10, 2021 and brought together 342 scientists, families, and industry representatives from over 25 countries to share the latest discoveries on underlying cellular and molecular mechanisms of T21, cognitive and behavioral changes, and comorbidities associated with Down syndrome, including Alzheimer's disease and Regression Disorder. Presentations of 91 cutting-edge abstracts reflecting neuroscience, neurology, model systems, psychology, biomarkers, and molecular and pharmacological therapeutic approaches demonstrate the compelling interest and continuing advancement toward innovating biomarkers and therapies aimed at ameliorating health conditions associated with T21.

GenIDA: an international participatory database to gain knowledge on health issues related to genetic forms of neurodevelopmental disorders.

Intellectual disability with or without manifestations of autism and/or epilepsy affects 1-2% of the population, and it is estimated that more than 30-50% of these cases have a single genetic cause. More than 1000 genes and recurrent chromosomal abnormalities are involved in these genetic forms of neurodevelopmental disorders, which often remain insufficiently described in terms of clinical spectrum, associated medical problems, etc., due to their rarity and the often-limited number of patients' phenotypes reported. GenIDA is an international online participatory database that aims to better characterise the clinical manifestations and natural histories of these rare diseases. Clinical information is reported by parents of affected individuals using a structured questionnaire exploring physical parameters, cognitive and behavioural aspects, the presence or absence of neurological disorders or problems affecting major physiological functions, as well as autonomy and quality of life. This strengthens the implication in research of the concerned families. GenIDA aims to construct international cohorts of significant size of individuals affected by a given condition. As of July 2022, GenIDA counts some 1545 documented patient records from over 60 nationalities and collaborates with clinicians and researchers around the world who have access to the anonymized data collected to generate new, medically meaningful information to improve patient care. We present the GenIDA database here, together with an overview of the possibilities it offers to affected individuals, their families, and professionals in charge of the management of genetic forms of neurodevelopmental disorders. Finally, case studies of cohorts will illustrate the usefulness of GenIDA.

Editorial: An international showcase

Accessible summary: After the consultation with people with learning disabilities, the topic of health inequalities was chosen for the 2024 special issue.The lives of people with learning disabilities around the world was also of interest to people so we have made this the theme of this issue. There are papers from the Czech Republic, Hong Kong, Belgium, Chile and Iceland.We also have papers about life in the COVID‐19 pandemic.

A survey on the use of remote consultation for people with intellectual disability: The experience of community intellectual disability teams

Since COVID-19, remote consultation (by telephone and video) has become widespread. This study investigated the experience of using remote consultation in Specialist Intellectual Disability Community services. A total of 126 health staff working across eight Specialist Intellectual Disability Community teams in the NHS Health Board of Greater Glasgow and Clyde were asked to complete a short Likert-scale survey about remote consultation. There were 61 (48%) respondents from a range of disciplines. Overall, respondents were positive about remote consultation but found it was often inadequate to complete a full patient assessment. Moving forwards, respondents wanted around 60% of all consultations to remain face-to-face. It was significantly more difficult to engage and communicate with patients with more severe levels of disability. Remote consultation has been successful, but there is still a need for face-to-face assessment in intellectual disability services, particularly when working with people with more severe levels of disability.

Living and dying well with dementia

Many people with intellectual disability, particularly those with Down syndrome, are at increased risk for Alzheimer's disease. Recent findings suggest that while onset may be at an earlier age and more rapid in early dementia stages, there is often a long late stage where decisions about end-of-life care and dying well must be supported. For the individual and caregivers, later stages of dementia can be complicated by lack of understanding and preparedness by both generic palliative care and intellectual disability services. The COVID-19 pandemic has posed significant challenges for staff and family, and many have struggled with moral distress as they feel forced to act in a manner contrary to their own care beliefs. Three case studies with reflective questions about caring for people with Down syndrome and dementia are offered, one from the COVID-19 period. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Use of do-not-resuscitate orders

Use of patient/health proxy authorised do-not-resuscitate (DNR) or do-not-attempt-resuscitation (DNAR) orders is widespread in palliative, hospice and hospital-based chronic illness care. Such orders often reflect self-determination, avoidance of futile care and quality of dying principles. Reports during COVID-19 of physicians writing DNR/DNAR orders for people with intellectual disabilities at rates higher than the general population amplify past concerns about the value placed on their lives. Yet, absence of a DNR/DNAR or processes to permit one when someone cannot consent may result in painful and unnecessary prolongation of life. This chapter considers rationales for DNR/DNAR orders, use among people with intellectual disabilities, advance care planning, protocols when an individual is unable to consent and strategies for oversight of DNR/DNAR orders. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Doing and talking: People with intellectual disabilities' handling of challenges of remote communication

This article is about the challenge of communication via smartphones and tablets by people with intellectual disabilities (ID). We will give special attention to persons that struggle with verbal communication. One of our co-researchers, the fourth author, has a severe ID. She cannot read, write or use voice assisted technology in any functional manner. As a result of many years of collaboration, and the need for solutions in connection with the challenges with COVID-19, she and her family have developed ways of remote communication that can be mastered both by the person with an ID and the majority (those without similar disabilities). We call it doing and talking. Successful remote communication not only depends on technology and how to use it, but also on communication strategies that both work for the person with an ID and the majority. It is often the case that people with ID are expected to learn the skills necessary to adapt to the majority. We will show that success is just as much a question of the majority learning new skills and strategies that can make real inclusion and collaboration possible. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Challenges of parents with children with intellectual and neurodevelopmental disorders during COVID-19: Experiences and their impact on mental health

Parents of children with intellectual and neurodevelopmental disorders are a highly burdened group that faces additional challenges during the COVID-19 pandemic. In this study, parents of children with intellectual and neurodevelopmental disorders (N = 600) living in Canada participated in a cross-sectional online survey. More than 96% of the parents reported facing additional challenges due to the pandemic. COVID-19-related stressors correlated with poorer mental and physical health. Parents who reported a higher amount of COVID-19-related stressors also reported more post-traumatic stress disorder (PTSD) symptoms. Resuming and implementing new services for children with intellectual and neurodevelopmental disorders and their parents will be key in alleviating the challenges for those parents.