Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.

Quality of Educational Programs for Elementary School-Age Students With Autism.

The purpose of this study was to assess the quality of educational programs for school-aged children with autism in the United States. Investigators completed the Autism Program Environment Quality Rating Systems-Preschool/Elementary (APERS-PE) in 60 elementary schools enrolling children with autism. The mean total rating scores were near the midpoint rating, indicating schools were providing educational program environments classified as adequate but not of high quality. Domains of the APERS-PE reflecting structural quality tended to be significantly above average and domains reflecting process quality tended to be significantly below average. With a few exceptions, inclusive and special education program did not differ significantly in total program quality ratings and reflected the same pattern of domain quality ratings.

Employing Evidence-Based Practices for Children with Autism in Elementary Schools.

The purpose of this study was to test the efficacy of a comprehensive program model originally developed by the National Professional Development Center on Autism Spectrum Disorder (NPDC). Sixty elementary schools with 486 participants were randomly assigned to an NPDC and services as usual condition (SAU). Significantly greater changes in program quality occurred in the inclusive NPDC programs as compared with the SAU schools. Teachers in NPDC schools reported using more evidence-based practices (EBPs) and implemented EBPs with significantly greater fidelity than teachers in SAU schools. Autistic students in NPDC schools had significantly higher total attainment of educational goals than students in SAU schools, and the two groups made equivalent progress on standardized assessment outcomes across the school year.

Disseminating Information on Evidence-Based Practices for Children and Youth with Autism Spectrum Disorder: AFIRM.

Comprehensive reviews of the research literature have identified that focused intervention practices for children and youth with autism spectrum disorder have evidence of producing positive developmental and learning outcomes. The Autism Focused Intervention Resources and Modules (AFIRM) project has translated evidence-based practices identified by Wong et al. (Journal of Autism and Developmental Disorders 45(7):1951-1966, 2015) into online learning modules. The purpose of this paper is to describe (1) the process for translating the research literature into practical information that practitioners can use, (2) its dissemination through a freely accessible website, (3) the use of the modules by over 64,500 users located in the United States and abroad, (4) knowledge gained as a result of completing the modules, and (5) consumers' evaluations of modules usefulness and relevance.

Assessing Quality of Program Environments for Children and Youth with Autism: Autism Program Environment Rating Scale (APERS).

The purpose of this study was to examine the psychometric properties of the Autism Program Environment Rating Scale (APERS), an instrument designed to assess quality of program environments for students with autism spectrum disorder. Data sets from two samples of public school programs that provided services to children and youth with autism spectrum disorder were utilized. Cronbach alpha analyses indicated high coefficients of internal consistency for the total APERS and moderate levels for item domains for the first data set, which was replicated with the second data set. A factor analysis of the first data set indicated that all domain scores loaded on one main factor, in alignment with the conceptual model, with this finding being replicated in the second data set. Also, the APERS was sensitive to changes resulting from a professional development program designed to promote program quality.

Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder: A Comprehensive Review.

The purpose of this study was to identify evidenced-based, focused intervention practices for children and youth with autism spectrum disorder. This study was an extension and elaboration of a previous evidence-based practice review reported by Odom et al. (Prev Sch Fail 54:275-282, 2010b, doi: 10.1080/10459881003785506 ). In the current study, a computer search initially yielded 29,105 articles, and the subsequent screening and evaluation process found 456 studies to meet inclusion and methodological criteria. From this set of research studies, the authors found 27 focused intervention practices that met the criteria for evidence-based practice (EBP). Six new EBPs were identified in this review, and one EBP from the previous review was removed. The authors discuss implications for current practices and future research.

Sleep paralysis and folklore.

Sleep paralysis is a relatively new term to describe what for hundreds of years many believed to be a visitation by a malevolent creature which attacked its victims as they slept. The first clinical description of sleep paralysis was published in 1664 in a Dutch physician's case histories, where it was referred to as, 'Incubus or the Night-Mare [sic]'. In 1977, it was discovered more than 100 previously healthy people from various South East Asian communities had died mysteriously in their sleep. The individuals affected were dying at a rate of 92/100,000 from Sudden Unexplained Nocturnal Death Syndrome. No underlying cause was ever found, only that subsequent studies revealed a high rate of sleep paralysis and belief in the dab tsog (nightmare spirit) amongst members of the community. The nightmare/succubus is descended from Lilith. The earliest reference to Lilith is found in the Sumerian King list of 2400 BC known as Lilitu or she-demon, she bore children from her nocturnal unions with men. In other derivations, she was Adam's first wife who rather than 'obey' became a demon that preyed on women during childbirth. In modern Middle Eastern maternity wards, some women still wear amulets for protection. Today, clinical cause of these disturbances is sleep paralysis due to the unsuitable timing of REM sleep. During the 'Nightmare' episode, the sleeper becomes partially conscious during REM cycle, leaving the individual in a state between dream and wakefulness. For some, culture and the tradition of the nightmare is explanation enough.

Long-term quality-of-life outcome after mesh sacrocolpopexy for vaginal vault prolapse.

OBJECTIVE: To evaluate the long-term outcome of mesh sacrocolpopexy (MSC, which aims to restore normal pelvic floor anatomy to alleviate prolapse related symptoms) and its effect on patient's quality of life, as women with vaginal vault prolapse commonly have various pelvic floor symptoms that can affect urinary, rectal and sexual function. PATIENTS AND METHODS: From January 2000 to June 2006, consecutive patients with confirmed stage 2-4 vaginal vault prolapse subsequently had a MSC. Detailed telephone interviews using the Cleveland Clinic Short Form-20 Pelvic Floor Distress Inventory (PFDI) questionnaire, with Urinary Distress Inventory (UDI), Pelvic Organ Prolapse Distress Inventory (POPDI) and Colorectal-Anal Distress Inventory (CRADI) subscales was completed by all patients to assess symptoms before and after MSC, improvement in sexual function and overall satisfaction. RESULTS: In all, 21 patients had abdominal MSC; the median (range) follow-up was 52.2 (21-99) months. Total PFDI scores were significantly better after MSC (mean 44.0/300) than before (mean 113.9/300; P < 0.001). Analysis of the subscale scores showed that all patients reported a significant improvement of symptoms in the POPDI category (P < 0.001). CRADI subscale scores showed no significant change after MSC (before, mean 7.43/100 vs after 8.47/100; P = 0.542). There was an improvement of urinary symptoms on the UDI subscale after MSC but it was not statistically significant (P = 0.08). Analysis of score differences over time after MSC showed an insignificant decreasing slope (P = 0.227), suggesting long-term stability of symptoms after surgery; 90% of patients reported a significant improvement in sexual function and excellent long-term overall satisfaction with MSC. CONCLUSION: Our results suggest that MSC is a safe and effective surgical option for treating vaginal vault prolapse, providing symptom improvement and stability in the long term.

Intranuclear aggregation of nonexpanded ataxin-3 in marinesco bodies of the nonhuman primate substantia nigra.

Marinesco bodies (MB) are intranuclear inclusion bodies predominantly found in melanin-pigmented neurons of the substantia nigra. MB are demonstrable not only in humans but also in nonhuman primates. In the present study MB of aged rhesus monkeys (Macaca mulatta; n = 15; mean age 16 years) and aged baboons (Papio anubis; n = 13; mean age 25 years) were examined immunohistochemically. MB were found to be immunoreactive for ubiquitin, a protein involved in initiation of proteasome-mediated proteolysis. We also demonstrate that MB in monkeys are intensely immunoreactive for the protein ataxin-3 as detected by using two monoclonal anti-ataxin-3 antibodies (1H9 and 2B6). The abnormally expanded form of this polyglutamine protein is known to be causally involved in spinocerebellar ataxia type 3 or Machado-Joseph disease. The monoclonal antibody 1C2 was employed to examine whether ataxin-3 in MB in monkeys contains such an abnormally expanded polyglutamine stretch. MB were consistently 1C2-immunonegative, indicating that they are composed of normal wild-type ataxin-3. In conclusion MB in nonhuman primates permit experimental examination of mechanisms involved in transnuclear localization, intranuclear aggregation, and ubiquitination of nonexpanded polyglutamine proteins.

Pallido-nigral spheroids in nonhuman primates: accumulation of heat shock proteins in astroglial processes.

Alpha-B crystallin, ubiquitin and heat shock protein 27 (hsp27) belong to a class of proteins that are overexpressed in response to pathological conditions associated with increased cellular stress. In the present study, brain sections of old rhesus monkeys ( Macaca mulatta; n=10; mean age, 29.4 years) and baboons ( Papio anubis; n=8; mean age, 18.3 years) were examined for ubiquitin, alpha-B crystallin and hsp27-immunopositive structures. In both species, immunoreactive spheroid-like bodies were found in the globus pallidus and in the substantia nigra, pars reticulata. These structures frequently were associated with abnormally swollen cellular processes. To further clarify the origin of the pallido-nigral spheroids, single- and double-immunostaining was performed for hsp27, alpha-B crystallin and the astroglial marker glial fibrillary acidic protein (GFAP) as well as for neuronal markers against neurofilament and dendritic microtubule-associated protein 2. Confocal microscopic analysis demonstrated that spheroids were localized in swollen astroglial processes, whereas they were not seen in neuronal structures. Thus, pallido-nigral spheroids can be classified as astroglial accumulations of heat shock proteins. Further investigations of these structures may provide information pertinent to our understanding of astroglial heat shock protein inclusions developing in degenerative human brain diseases.