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Behavioral Sciences (Basel, Switzerland) Apr 2024Children and adolescents with intellectual disabilities (ID) often encounter difficulties with narrative skills. Yet, there is a lack of research focusing on how to... (Review)
Review
Children and adolescents with intellectual disabilities (ID) often encounter difficulties with narrative skills. Yet, there is a lack of research focusing on how to assess these skills in this population. This study offers an overview of the tools used for assessing oral narrative skills in children and adolescents with ID, addressing key questions about common assessment tools, their characteristics, and reported evidence. A systematic review was conducted of the literature published between 2010 and 2023 in the PsycINFO, ERIC, Education, and Psychology databases. An initial 1176 studies were reviewed by abstract, of which 485 were read in full text, leading to the selection and analysis of 22 studies. Most of the identified tools involve analyzing language samples obtained using wordless picture story books. Three common tools are emphasized. Studies have primarily identified inter-rater reliability and test-criterion evidence for validity. The main tools and their characteristics are discussed in depth to aid readers in discerning suitable options for research or practical applications. The importance of reporting diverse sources of evidence for validity and reliability within this population is highlighted.
PubMed: 38667104
DOI: 10.3390/bs14040308 -
Epilepsy & Behavior : E&B Jun 2024To estimate the prevalence of epilepsy and febrile seizures and their association with genotype, i.e., 15q11-q13 deletions, uniparental chromosome 15 disomy (UPD) and... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
To estimate the prevalence of epilepsy and febrile seizures and their association with genotype, i.e., 15q11-q13 deletions, uniparental chromosome 15 disomy (UPD) and other mutations, in the population with Prader-Willi syndrome (PWS).
METHODS
A systematic search of Medline, Scopus, Web of Science and the Cochrane Library was conducted. Studies estimating the prevalence of seizures, epilepsy and febrile seizures in the PWS population were included. Meta-analyses of the prevalence of epilepsy and febrile seizures and their association with genotype using the prevalence ratio (PR) were performed.
RESULTS
Fifteen studies were included. The prevalence of epilepsy was 0.11 (0.07, 0.15), similar to the prevalence of febrile seizures, with a prevalence of 0.09 (0.05, 0.13). The comparison "deletion vs. UPD" had a PR of 2.03 (0.90, 4.57) and 3.76 (1.54, 9.18) for epilepsy and febrile seizures.
CONCLUSIONS
The prevalence of seizure disorders in PWS is higher than in the general population. In addition, deletions in 15q11-q13 may be associated with a higher risk of seizure disorders. Therefore, active screening for seizure disorders in PWS should improve the lives of these people. In addition, genotype could be used to stratify risk, even for epilepsy, although more studies or larger sample sizes are needed.
Topics: Humans; Prader-Willi Syndrome; Epilepsy; Prevalence; Genotype; Chromosomes, Human, Pair 15
PubMed: 38663143
DOI: 10.1016/j.yebeh.2024.109803 -
Clinical Psychology Review Jun 2024We report a review examining the psychological wellbeing of parents of children with Down syndrome (DS) relative to that of parents of typically developing (TD)... (Meta-Analysis)
Meta-Analysis Review
We report a review examining the psychological wellbeing of parents of children with Down syndrome (DS) relative to that of parents of typically developing (TD) children. A systematic search identified 57 relevant studies, which were synthesised meta-analytically. Relative to their counterparts with TD children, mothers and fathers of children with DS reported higher levels of parenting stress (mothers: g = 0.57, 95% CI [0.33, 0.81]; fathers: g = 0.40, [0.24, 0.56]), depressive symptoms (mothers: g = 0.42, [0.23, 0.61]; fathers: g = 0.25, [0.02, 0.48]) and psychological distress (mothers: g = 0.45, [0.30, 0.60]; fathers: g = 0.63, [0.26, 0.99]). Small effects were found for anxiety for mothers (g = 0.16, [0.03, 0.29]), with no differences for fathers (g = 0.03, [-0.25, 0.32]). No group differences were found for positive impact of parenting (mothers: g = -0.09, [-0.25, 0.07]; fathers: g = -0.04, [-0.30, 0.22]), while evidence concerning other positive wellbeing outcomes was limited. No significant moderating effects of child age range, country income level, or group differences in parental education level were identified, but limited subgroup analyses were possible. Raising a child with DS may be associated with elevated stress, depressive symptoms, and psychological distress for mothers and fathers. However, levels of parenting reward appear equivalent to those experienced by parents raising TD children.
Topics: Humans; Down Syndrome; Parenting; Stress, Psychological; Child; Parents; Depression; Anxiety; Adult; Psychological Distress
PubMed: 38652972
DOI: 10.1016/j.cpr.2024.102426 -
Age and Ageing Apr 2024Delirium is most often reported as present or absent. Patients with symptoms falling short of the diagnostic criteria for delirium fall into 'no delirium' or 'control'...
OBJECTIVES
Delirium is most often reported as present or absent. Patients with symptoms falling short of the diagnostic criteria for delirium fall into 'no delirium' or 'control' groups. This binary classification neglects individual symptoms and may be hindering identification of the pathophysiology underlying delirium. This systematic review investigates which individual symptoms of delirium are reported by studies of postoperative delirium in adults.
METHODS
Medline, EMBASE and Web of Science databases were searched on 03 June 2021 and 06 April 2023. Two reviewers independently examined titles and abstracts. Each paper was screened in duplicate and conflicting decisions settled by consensus discussion. Data were extracted, qualitatively synthesised and narratively reported. All included studies were quality assessed.
RESULTS
These searches yielded 4,367 results. After title and abstract screening, 694 full-text studies were reviewed, and 62 deemed eligible for inclusion. This review details 11,377 patients including 2,049 patients with delirium. In total, 78 differently described delirium symptoms were reported. The most reported symptoms were inattention (N = 29), disorientation (N = 27), psychomotor agitation/retardation (N = 22), hallucination (N = 22) and memory impairment (N = 18). Notably, psychomotor agitation and hallucinations are not listed in the current Diagnostic and Statistical Manual for Mental Disorders-5-Text Revision delirium definition.
CONCLUSIONS
The 78 symptoms reported in this systematic review cover domains of attention, awareness, disorientation and other cognitive changes. There is a lack of standardisation of terms, and many recorded symptoms are synonyms of each other. This systematic review provides a library of individual delirium symptoms, which may be used to inform future reporting.
Topics: Humans; Delirium; Psychomotor Agitation
PubMed: 38640126
DOI: 10.1093/ageing/afae077 -
The Cochrane Database of Systematic... Apr 2024Bronchopulmonary dysplasia (BPD) remains an important complication of prematurity. Pulmonary inflammation plays a central role in the pathogenesis of BPD, explaining the... (Review)
Review
BACKGROUND
Bronchopulmonary dysplasia (BPD) remains an important complication of prematurity. Pulmonary inflammation plays a central role in the pathogenesis of BPD, explaining the rationale for investigating postnatal corticosteroids. Multiple systematic reviews (SRs) have summarised the evidence from numerous randomised controlled trials (RCTs) investigating different aspects of administrating postnatal corticosteroids. Besides beneficial effects on the outcome of death or BPD, potential short- and long-term harms have been reported.
OBJECTIVES
The primary objective of this overview was to summarise and appraise the evidence from SRs regarding the efficacy and safety of postnatal corticosteroids in preterm infants at risk of developing BPD.
METHODS
We searched the Cochrane Database of Systematic Reviews, MEDLINE, Embase, CINAHL, and Epistemonikos for SRs in April 2023. We included all SRs assessing any form of postnatal corticosteroid administration in preterm populations with the objective of ameliorating pulmonary disease. All regimens and comparisons were included. Two review authors independently checked the eligibility of the SRs comparing corticosteroids with placebo, and corticosteroids with different routes of administration and regimens. The included outcomes, considered key drivers in the decision to administer postnatal corticosteroids, were the composite outcome of death or BPD at 36 weeks' postmenstrual age (PMA), its individual components, long-term neurodevelopmental sequelae, sepsis, and gastrointestinal tract perforation. We independently assessed the methodological quality of the included SRs by using AMSTAR 2 (A Measurement Tool to Assess Systematic Reviews) and ROBIS (Risk Of Bias In Systematic reviews) tools. We assessed the certainty of the evidence using GRADE. We provided a narrative description of the characteristics, methodological quality, and results of the included SRs.
MAIN RESULTS
We included nine SRs (seven Cochrane, two non-Cochrane) containing 87 RCTs, 1 follow-up study, and 9419 preterm infants, investigating the effects of postnatal corticosteroids to prevent or treat BPD. The quality of the included SRs according to AMSTAR 2 varied from high to critically low. Risk of bias according to ROBIS was low. The certainty of the evidence according to GRADE ranged from very low to moderate. Early initiated systemic dexamethasone (< seven days after birth) likely has a beneficial effect on death or BPD at 36 weeks' PMA (risk ratio (RR) 0.88, 95% confidence interval (CI) 0.81 to 0.95; number needed to treat for an additional beneficial outcome (NNTB) 16, 95% CI 10 to 41; I = 39%; 17 studies; 2791 infants; moderate-certainty evidence) and on BPD at 36 weeks' PMA (RR 0.72, 95% CI 0.63 to 0.82; NNTB 13, 95% CI 9 to 21; I = 39%; 17 studies; 2791 infants; moderate-certainty evidence). Early initiated systemic hydrocortisone may also have a beneficial effect on death or BPD at 36 weeks' PMA (RR 0.90, 95% CI 0.82 to 0.99; NNTB 18, 95% CI 9 to 594; I = 43%; 9 studies; 1376 infants; low-certainty evidence). However, these benefits are likely accompanied by harmful effects like cerebral palsy or neurosensory disability (dexamethasone) or gastrointestinal perforation (both dexamethasone and hydrocortisone). Late initiated systemic dexamethasone (≥ seven days after birth) may have a beneficial effect on death or BPD at 36 weeks' PMA (RR 0.75, 95% CI 0.67 to 0.84; NNTB 5, 95% CI 4 to 9; I = 61%; 12 studies; 553 infants; low-certainty evidence), mostly contributed to by a beneficial effect on BPD at 36 weeks' PMA (RR 0.76, 95% CI 0.66 to 0.87; NNTB 6, 95% CI 4 to 13; I = 14%; 12 studies; 553 infants; low-certainty evidence). No harmful side effects were shown in the outcomes chosen as key drivers to the decision to start or withhold late systemic dexamethasone. No effects, either beneficial or harmful, were found in the subgroup meta-analyses of late hydrocortisone studies. Early initiated inhaled corticosteroids probably have a beneficial effect on death and BPD at 36 weeks' PMA (RR 0.86, 95% CI 0.75 to 0.99; NNTB 19, 95% CI not applicable; I = 0%; 6 studies; 1285 infants; moderate-certainty evidence), with no apparent adverse effects shown in the SRs. In contrast, late initiated inhaled corticosteroids do not appear to have any benefits or harms. Endotracheal instillation of corticosteroids (budesonide) with surfactant as a carrier likely has a beneficial effect on death or BPD at 36 weeks' PMA (RR 0.60, 95% CI 0.49 to 0.74; NNTB 4, 95% CI 3 to 6; I = 0%; 2 studies; 381 infants; moderate-certainty evidence) and on BPD at 36 weeks' PMA. No evidence of harmful effects was found. There was little evidence for effects of different starting doses or timing of systemic corticosteroids on death or BPD at 36 weeks' PMA, but potential adverse effects were observed for some comparisons. Lowering the dose might result in a more unfavourable balance of benefits and harms. Moderately early initiated systemic corticosteroids, compared with early systemic corticosteroids, may result in a higher incidence of BPD at 36 weeks' PMA. Pulse dosing instead of continuous dosing may have a negative effect on death and BPD at 36 weeks' PMA. We found no differences for the comparisons of inhaled versus systemic corticosteroids.
AUTHORS' CONCLUSIONS
This overview summarises the evidence of nine SRs investigating the effect of postnatal corticosteroids in preterm infants at risk for BPD. Late initiated (≥ seven days after birth) systemic administration of dexamethasone is considered an effective intervention to reduce the risk of BPD in infants with a high risk profile for BPD, based on a favourable balance between benefits and harms. Endotracheal instillation of corticosteroids (budesonide) with surfactant as a carrier is a promising intervention, based on the beneficial effect on desirable outcomes without (so far) negative side effects. Pending results of ongoing large, multicentre RCTs investigating both short- and long-term effects, endotracheal instillation of corticosteroids (budesonide) with surfactant as a carrier is not appropriate for clinical practice at present. Early initiated (< seven days after birth) systemic dexamethasone and hydrocortisone and late initiated (≥ seven days after birth) hydrocortisone are considered ineffective interventions, because of an unfavourable balance between benefits and harms. No conclusions are possible regarding early and late inhaled corticosteroids, as more research is needed.
Topics: Infant, Newborn; Infant; Humans; Glucocorticoids; Bronchopulmonary Dysplasia; Anti-Inflammatory Agents; Hydrocortisone; Dexamethasone; Systematic Reviews as Topic; Budesonide; Surface-Active Agents
PubMed: 38597338
DOI: 10.1002/14651858.CD013271.pub2 -
Frontiers in Psychology 2024This bibliometric study scrutinizes the corpus of scientific output within the Web of Science pertaining to familial satisfaction among parents raising children with...
This bibliometric study scrutinizes the corpus of scientific output within the Web of Science pertaining to familial satisfaction among parents raising children with intellectual disabilities, focusing specifically on the milieu of educational inclusion. The analysis discerns a discernible ascension in scholarly interest in this domain, encapsulating 77 papers emanating from 75 journals, incorporating an aggregate of 3,497 cited references. Our investigation delineated 354 researchers across 39 nations, underscoring the transnational purview of this scholarly endeavor. The United States emerged as the pre-eminent contributor, with Canada and the United Kingdom following suit. Collaboration on an international scale was notably led by the US, with the UK and Australia trailing in tandem. Prominent institutions were identified for their scholarly output; the University of Kansas led with four papers, followed closely by Monash University, University of California Los Angeles, and University of California Riverside, each contributing three papers. Of particular note, the University of Kansas accrued 250 global citations (TGCS). A total of 75 journals were encompassed in this study. The Journal of Intellectual Disability Research emerged as the vanguard with four published papers, closely trailed by Child Care Health and Development and Exceptional Children. Notably, the latter boasted the highest impact factor (JCR = 4.09; Q1). In summation, this review proffers a meticulous and expansive overview of extant scholarship concerning the experiences of families rearing children with disabilities within the inclusive education framework.
PubMed: 38586293
DOI: 10.3389/fpsyg.2024.1335168 -
BMC Geriatrics Apr 2024Apart from both China and the Philippines continuing to be exposed to and affected by different climate-induced hazards, in particular floods and typhoons, they are also...
BACKGROUND
Apart from both China and the Philippines continuing to be exposed to and affected by different climate-induced hazards, in particular floods and typhoons, they are also reported to be witnessing rapid ageing populations of 60 years and older. As such, this systematic review synthesized the existing evidence about the impacts aggravated by floods and typhoons on the geriatric disabling health of older Chinese and Filipinos, respectively.
METHODS
Four (4) electronic databases were systematically searched to identify eligible studies published between 2000 and early 2023. This process had to confirm the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PRISMA), as well as the standard protocol registered with PROSPERO (CRD42023420549).
RESULTS
Out of 317 and 216 initial records retrieved for China and the Philippines, respectively, 27 (China) and 25 (Philippines) studies were eligible for final review. The disabling conditions they reported to affect the health of older adults were grouped into 4 categories: cognitive and intellectual, physical, chronic and terminal illnesses, and mental and psychological, with the latter identified as the most prevalent condition to affect older Chinese and Filipinos. On a sub-category level, posttraumatic stress disorder (PTSD) was the most common condition reported in 27 flood-related studies in China, while injuries and wounds prevailed in the Philippines, according to 25 typhoon-related studies.
CONCLUSION
The increasing occurrence of extreme climate hazards, especially floods and typhoons in China and the Philippines, respectively, impacted the health of their older adults with various disabling effects or conditions. Therefore, this calls for appropriate geriatric-informed interventions in the context of climate change and rapidly ageing settings beyond China and the Philippines to others that are also prone to floods and typhoons.
Topics: Aged; Humans; Aging; Asian People; China; Cyclonic Storms; Floods; Philippines; Health Status; Geriatric Assessment
PubMed: 38580910
DOI: 10.1186/s12877-024-04855-z -
Journal of Intellectual Disabilities :... Apr 2024Inclusive education remains a challenge to be embraced by the national educational system, and this challenge becomes even more pronounced when considering the access... (Review)
Review
Inclusive education remains a challenge to be embraced by the national educational system, and this challenge becomes even more pronounced when considering the access and participation of young individuals with intellectual disabilities (ID) in higher education. The present systematic review aims to delve into the scientific literature addressing the theme of the presence of students with ID in Spanish university classrooms. To achieve this, a thorough examination of 34 scientific articles published between 2012 and 2022 was conducted across the databases of Dialnet, RedALyC, SCOPUS, Web of Science, and Google Scholar. Through the analysis of the selected studies, a research trend regarding the inclusion of students with ID in Spanish universities is identified, and the results are summarized. These results indicate a disparity between the increasing response of Spanish universities to students with ID and the limited production of scientific literature on the subject. The review concludes by emphasizing the need to promote high-quality inclusive research processes within the university environment, with a focus on accessibility and equal opportunities for young individuals with ID in higher education.
PubMed: 38574375
DOI: 10.1177/17446295241246035 -
Heliyon Apr 2024Family-Centered Care (FCC) is an approach to healthcare planning, delivery and evaluation, based on beneficial partnerships between health professionals, patients and...
BACKGROUND
Family-Centered Care (FCC) is an approach to healthcare planning, delivery and evaluation, based on beneficial partnerships between health professionals, patients and families. FCC may be particularly relevant for families with children with intellectual disability (ID), given their needs of continuum care.
OBJECTIVE
To identify which components of the FCC are practiced and which health outcomes are considered effective in families with children with ID.
METHOD
A systematic review guided by the PRISMA STATEMENT 2020 approach and the STROBE reporting guidelines was performed on specific databases through the EBSCOhost Web platform: MEDLINE , CINAHL PLUS , Academic Search Complete and Psychology and Behavioral Sciences Collection. Peer-reviewed articles published in English or Portuguese languages from 2018 to September 2023 were retrieved. Methodological quality was established using the Quality Assessment Tool for Observational, Cohort and Cross-Sectional Studies - NHLBI, NIH.
RESULTS
Ten studies met the eligibility criteria and were synthetized. The results revealed nine components, reflecting the way FCC was developed: shared decision-making; family education; respect for culture; family engagement; recognition of the family's needs, characteristics and interests; specialized care support; social and emotional support; family functionality; and family seen as a unit. The health outcomes demonstrate effective gains in improving children's health through family satisfaction with health services. Also achieved psychological and social benefits, with improved family well-being and quality of life, favoring family empowerment.
CONCLUSIONS
The evidence suggests that FCC components involves an effective partnership between the family and health professionals as the main key in developing care plans, as well as the experience that the family unit brings to the delivery of care. FCC approach include all family members as decision-makers, providing emotional, physical and instrumental levels of support. Health outcomes emerged in three strands; for children with ID, families and health services.
PubMed: 38560242
DOI: 10.1016/j.heliyon.2024.e28241 -
Intellectual and Developmental... Apr 2024The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the...
The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of adults with IDD receiving long-term services and supports. Results of this review describe current outcomes for adults with IDD who receive long-term services and supports and can be used to inform program evaluation, policy development, and future research.
Topics: Adult; Humans; Developmental Disabilities; Intellectual Disability; Program Evaluation; Quality of Life
PubMed: 38545817
DOI: 10.1352/1934-9556-62.2.137