The education of learners with CHARGE syndrome

Deuce, Gail

doi:10.1111/1467-8578.12183

Cited by 8 publications

(7 citation statements)

References 13 publications

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“…This is not surprising given that communication is one of the key affected areas of development in MSI (Aitken, 2001; Hodges et al, 2019); central to the curriculum of the PMLD group (Goldbart and Ware, 2015) and key area of work with the MDVI group (McLinden, 2012). Inclusion in mainstream schools was the focus of only 1 study (Kamenopoulou, 2012) and 3 studies included both special and mainstream environments (Miller, 2001; Lacey, 2001; Deuce, 2017). This is in stark contrast with research (and practice) from the US that has paid far more attention to interventions related to mainstream placement (see, for example, Mar and Sall, 1995).…”

Section: Discussion and Limitationsmentioning

confidence: 99%

Multi–sensory impairment: convenient label or recipe for confusion? A scoping review of research conducted in England (2001‐20)

Kamenopoulou

Ali

Ockelford

2021

Research in Spec Educ Needs

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In England, the term ‘multi‐sensory impairment’ (MSI) has come to overlap with other labels, which is problematic for both research and practice. We undertook a scoping review of empirical studies conducted in England over the past 20 years on MSI and overlapping labels. We designed and used a review protocol and combined multiple searching methods, including repeated database searches, manual searching of journals and expert recommendations. We identified 29 studies that met the criteria for inclusion in the review, and we analysed these according to three themes: (1) terminology used, (2) topic explored, and (3) methodology adopted. We found that terminology was varied and poorly defined, with a lot of overlap between key terms that were used sometimes interchangeably. Moreover, studies varied in the level of transparency provided when methodology was reported. Finally, there was a dearth of research into inclusion in mainstream schools and research gathering learners’ voices. Implications for future research include the need for: (1) identification of factors that have led to overlapping terminology, (2) greater transparency in how the methodologies used in the field are reported, and (3) more evidence, especially from research on strategies in settings that promote inclusion, and research that includes learners’ voices.

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Section: Discussion and Limitationsmentioning

confidence: 99%

Multi–sensory impairment: convenient label or recipe for confusion? A scoping review of research conducted in England (2001‐20)

Kamenopoulou

Ali

Ockelford

2021

Research in Spec Educ Needs

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“…Second, synthesis of the CS literature was hampered by the large number of idiosyncratic descriptions used. For example, the 60% prevalence of ‘increased levels of stress and anxiety’ [ 49 ] and 35% incidence of ‘often seemed anxious’ [ 69 ] could not be reliably pooled with the 37% and 45% prevalence of anxiety diagnosis reported by Blake et al [ 18 ] and Hartshorne et al [ 17 ] respectively. Anxiety is a multifaceted construct that requires a fine-grained appraisal to facilitate meta-synthesis.…”

Section: Limitationsmentioning

confidence: 99%

Phenotypic characteristics and variability in CHARGE syndrome: a PRISMA compliant systematic review and meta-analysis

Thomas

Waite

Williams

et al. 2022

J Neurodevelop Disord

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Background CHARGE syndrome (OMIM #214800) is a phenotypically complex genetic condition characterised by multi-system, multi-sensory impairments. Behavioural, psychological, cognitive and sleep difficulties are not well delineated and are likely associated with biopsychosocial factors. Methods This meta-analysis investigated the prevalence of clinical features, physical characteristics and conditions, behavioural, psychological, cognitive and sleep characteristics in CHARGE syndrome, and statistically evaluated directional associations between these characteristics. Pooled prevalence estimates were calculated using reliable, prespecified quality weighting criteria, and meta-regression was conducted to identify associations between characteristics. Results Of the 42 eligible studies, data could be extracted for 1675 participants. Prevalence estimates were highest for developmental delay (84%), intellectual disability (64%), aggressive behaviour (48%), self-injurious behaviour (44%) and sleep difficulties (45%). Meta-regression indicated significant associations between intellectual disability and choanal atresia, intellectual disability and inner ear anomalies, sleep difficulties and growth deficiency, and sleep difficulties and gross motor difficulties. Conclusions Our comprehensive review of clinical features, behavioural, psychological, cognitive and physical characteristics, conditions and comorbidities in CHARGE syndrome provides an empirically based foundation to further research and practice.

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“…Približno 90% osoba sa ovim sindromom ima kompleksna oštećenja čula vida i čula sluha i probleme sa ravnotežom. Prateći činilac je telesna invalidnost koja uzrokuje dugotrajno zadržavanje u ležećem položaju, potrebu za dodatnom podrškom prilikom sedenja i stajanja, nedostatak svesti o šemi sopstvenog tela, teškoće u organizaciji i koordinaciji pokreta [12]. Samostalno hodanje kod dece sa CHARGE sindromom je najčešće odloženo do treće, a u nekim slučajevima i do četvrte godine života, karakteriše ih brzo zamaranje, kao i teškoće u području egzekutivnih funkcija, senzorne obrade i senzomotoričke integracije [13,14,15].…”

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“…Opisana multisenzorna oštećenja ograničavaju osobu u procesu prikupljanja, tumačenja i interpretacije informacija, tako da je prilagođavanje okruženja način da se neke teškoće prevaziđu. Osobe sa CHARGE sindromom imaju rano iskustvo sa prisustvom bola i izraženu vulnerabilnost na stresogene činioce i izlaganje naporu [12] što može da se odrazi na njihovo ponašanje, koje u nekim slučajevima karakterišu agresivni ispadi i ljutnja. Komunikaciona i senzorna ograničenja i skoro stalno prisustvo bola takođe su mogući uzroci neprilagođenih oblika ponašanja koje ova deca ispoljavaju [9].…”

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“…Jedinstvene odlike dece sa CHARGE sindromom i niska incidenca su, uslovno rečeno, ograničavajući faktori u procesu kreiranja plana podrške i individualnog obrazovnog plana jer, s jedne strane, zahteva detaljno razmatranje potreba svakog deteta i porodice, a s druge strane, retki su nastavnici koji imaju iskustvo u radu sa njima. Rezultati jednog novijeg istraživanja pokazuju da su transdisciplinarni pristup u proceni potencijala i metode koje se koriste u radu sa slepogluvom decom, uz uvažavanje razlika između njih i dece sa CHARGE sindromom, najbolji izbor [12]. Detaljnija istraživanja o obrazovnim potencijalima i potrebama dece sa CHARGE sindromom, na čije bi rezultate praktičari mogu da se oslone prilikom planiranja rehabilitacije i obrazovnog rada sa njima, veoma su retka.…”

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Charge syndrome: Clinical characteristics and elements of treatment

Jablan¹,

Vučinić²,

Stanimirov³

et al. 2019

Timočki medicinski glasnik

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Sažetak: U radu su prikazane osnovne karakteristike dece sa CHARGE sindromom koji u novije vreme predstavlja jedan od uzroka višestruke ometenosti i kongenitalne slepogluvoće. Opisana je klinička slika i varijacije vezane za stanje vida i sluha. Višestruke kongenitalne anomalije uzrok su teške kliničke slike kod ove dece, tako da zdravstvena briga veoma često ima prioritet u odnosu na obrazovanje. Socijalno neprihvatljivi oblici ponašanja često im predstavljaju prepreku za učenje, ostvarivanje komunikacije, građenje prijateljstava sa vršnjacima i funkcionisanje u svakodnevnom životu. Smatra se da su u radu sa ovom decom najefikasniji pristupi koji se koriste u radu sa slepogluvom decom, strukturirano podučavanje i uspostavljanje rutine. Ključne reči: CHARGE sindromi, višestruka ometenost, kongenitalna slepogluvoća, ponašanje, tretman, obrazovanje Summary: The paper presents the basic characteristics of children with CARGE syndrome, which in recent times has been one of the most common causes of congenital blindness and deafness. Clinical picture and variations related to vision and hearing status are described. Multiple congenital anomalies cause severe clinical picture in these children, so health care often takes priority over education. Socially unacceptable behavior are often a barrier to learning, establishing communication, building friendships with peers and functioning in daily life. The most effective approaches used in working with blind and deaf children, structured teaching, and establishing a routine are considered to be the most effective approaches to working with these children.

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The education of learners with CHARGE syndrome

Cited by 8 publications

References 13 publications

Multi–sensory impairment: convenient label or recipe for confusion? A scoping review of research conducted in England (2001‐20)

Multi–sensory impairment: convenient label or recipe for confusion? A scoping review of research conducted in England (2001‐20)

Phenotypic characteristics and variability in CHARGE syndrome: a PRISMA compliant systematic review and meta-analysis

Charge syndrome: Clinical characteristics and elements of treatment

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