Objective:The objective of this scoping review is threefold: (1) to describe outcomes of and determinants for physical functioning in pediatric intensive care unit (PICU) survivors evaluated during and/or after their PICU stay, (2) to provide an overview how physical functioning and its associated determinants in this population are reported, measured and classified in accordance with the International classification of Functioning, Disability and Health-Children and Youth framework (ICF-CY) components and (3) to synthesize key gaps in knowledge and research and clinical recommendations related to our review questions.Introduction:Optimal physical functioning in children is of major importance in their developmental trajectories and for the prevention and recovery of health problems across lifespan. PICU children are at high risk of poor physical functioning during and after critical illness. A recent overview of the literature, concerning evaluation of physical functioning in PICU survivors according to the ICF-CY components, is lacking. Inclusion criteria:This review includes empirical studies reporting outcomes and determinants of physical functioning in PICU survivors evaluated during and/or after PICU stay. All English language studies reporting empirical data will be included with no restrictions set on the types of study designs used.Methods:This review will be conducted in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) statement. To locate studies eligible for inclusion, the electronic databases Pubmed, EMBASE, CINAHL and Cochrane Library will be searched from the earliest records to October 2019. Study selection will be performed by two independent reviewers. Covidence software will be used to screen titles and abstracts as well as the full-text of included studies. Data extraction will be conducted using a customized form. The extracted data will be presented in diagrammatic or tabular form with an accompanying narrative summary.
DOCUMENT
Enhancing communication performance skills may help children with Down Syndrome (DS) to expand their opportunities for participation in daily life. It is a clinical challenge for speech-language pathologists (SLP) to disentangle various mechanisms that contribute to the language and communication problems that children with DS encounter. Without clarity of different levels of functioning, appropriate interventions may be poorly conceived or improperly implemented. In the present study, the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY) framework was used to classify contributing factors to communication performance in a multiple case study of six young children with DS. Within a comprehensive assessment, we identified individual and environmental facilitators and barriers, leading to an integrative profile of communication performance (IPCP) for each child. Whereas these six children shared a developmental, and/or expressive vocabulary age and/or level of communicative intent, the children faced similar but also unique personal and environmental factors that play an important role in their communication performance. Our data reveal that a combination of different factors may lead to the same language outcomes and vice versa, based on a unique pattern of interdependency of ICF-CY domains. Planning SLP interventions for enhancing communication performance in children with DS should therefore be based on a comprehensive view on the competences and limitations of every individual child and its significant communication partners. This evaluation should address facilitators and barriers in body functions, structures, activities, participation and environment, with a specific focus on individual strengths. The ICF-CY provides a useful framework for constructing an IPCP that serves this purpose.
DOCUMENT
AIM: To synthesize the evidence about the characteristics (frequency, intensity, time, type) and effects of physical rehabilitation interventions on functional recovery and performance in daily functioning in children and young people with acquired brain injury (ABI), including traumatic brain injuries (TBI) and non-TBI, during the subacute rehabilitation phase.METHOD: Using scoping review methodology, a systematic literature search was performed using four databases. Articles were screened by title and abstract and data from eligible studies were extracted for synthesis.RESULTS: Nine of 3009 studies were included. The results demonstrated a variety of intervention characteristics: frequency varied between 1 and 7 days per week; time of intervention varied between 25 minutes and 6 hours a day; intervention types were specified in seven studies; and none of the included studies reported details of intensity of intervention. All studies reported positive results on the International Classification of Functioning, Disability and Health: Children and Youth (ICF-CY) levels of body function and activities after the intervention period, with study designs of included studies being cohort studies without concurrent controls (n=7) or case reports (n=2).INTERPRETATION: Inconsistency in results hampers generalizability to guide clinical practice. Physical interventions during subacute rehabilitation have potential to improve functional recovery with intervention characteristics as an important factor influencing its effectiveness. Future well-designed studies are indicated to gain knowledge and optimize rehabilitation practice in paediatric ABI and high-quality research including outcomes across all ICF-CY domains is needed.
DOCUMENT
Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.
MULTIFILE
This PhD research explores how speech and language therapists (SLTs) can enhance the communicative participation of children with developmental language disorder (DLD) through shared decision-making with parents and a strong focus on the child's personal and environmental context. The work is grounded in the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY) framework (WHO, 2007), and focuses on four key concepts: DLD, communicative participation, shared decision-making, and contextual factors.
MULTIFILE
(Inter)nationaal is er discussie over de vraag of auditieve verwerkingsproblemen (AVP) gezien moeten worden als een unieke klinische diagnose en over de meest geschikte diagnostisering en verwijzing van kinderen in deze doelgroep. Binnen de Nederlandse Audiologische Centra (AC) wordt mede hierdoor verschillend omgegaan met kinderen met zogenaamde onverklaarde luisterproblemen.Het doel van het huidige document is om professionals handvatten te bieden bij het identificeren, diagnosticeren en behandelen van kinderen met luisterproblemen. Het ‘Dutch Position Statement Kinderen met Luisterproblemen’ is ontwikkeld op basis van het huidige wetenschappelijke bewijs omtrent luisterproblemen en op basis van bijeenkomsten gehouden met professionals. Over de volgende 9 statements is consensus bereikt onder professionals van de Nederlandse Audiologische Centra:Definitie:(1) De doelgroep ‘kinderen met luisterproblemen’ is geen unieke en aantoonbare klinische entiteit.(2) De problemen van kinderen met luisterproblemen zijn multimodaal.(3) De symptomen die kinderen met luisterproblemen vertonen kunnen ook voorkomen bij kinderen met andere ontwikkelingsstoornissen, zoals AD(H)D, TOS, dyslexie en leerstoornissen.Signalering en verwijzing:(4) Na signalering van luisterproblemen kan worden doorverwezen naar een multidisciplinair centrum.Diagnostiek:(5) Bij het diagnosticeren van een kind met luisterproblemen zijn minimaal een klinisch- fysicus audioloog, logopedist en gedragswetenschapper betrokken.(6) Luisterproblemen worden in eerste instantie in kaart gebracht met behulp van een anamnese (hulpvraag centraal) en indien beschikbaar een gevalideerde vragenlijst.(7) Bij kinderen met luisterproblemen wordt naast het toon- en spraakaudiogram altijd een spraak-in-ruis test afgenomen.(8) De diagnostische procedure bij luisterproblemen start vanuit een breed ontwikkelingsperspectief.Behandeling:(9) Bij kinderen met luisterproblemen is de interventie gericht op de hulpvraag en staat het handelingsgericht werken centraal.Dit document informeert professionals in Nederland, die te maken hebben met kinderen die worden aangemeld met klachten met betrekking tot het luisteren bij een goed perifeer gehoor over het huidige beschikbare bewijs en over het gezamenlijke standpunt hierover in Nederland.
DOCUMENT
Binnen het Raak Pro project ‘Praten kan ik niet …, maar communiceren wil ik wel’ hebben we onderzoek gedaan naar het gebruik van Communicatie Ondersteunende Hulpmiddelen (COH) bij kinderen/jongeren met ernstige communicatieve en meervoudige beperkingen. Het ging om kinderen/jongeren die niet, nauwelijks of zeer slecht verstaanbaar spreken vanwege hun meervoudige beperkingen. We onderzochten hoe zij en mensen in hun omgeving, bijvoorbeeld ouders, leraren en/of behandelaars geholpen konden worden bij het zoeken, selecteren en inzetten van de best passende en meest adequate hulpmiddelen om de communicatie van het kind/de jongere te ondersteunen en verder te ontwikkelen. Goede, optimaal aangepaste hulmiddelen, methoden en technieken voor communicatieondersteuning vergroten de mogelijkheden en kansen van deze kinderen en jongeren om meer (zelf)redzaam te worden, meer regie te hebben over eigen kwaliteit van leven en meer succesvol deel te nemen aan verschillende activiteiten in allerlei sociale en maatschappelijke contexten: thuis, op school, in dagbesteding of werk en in de vrije tijd. Hiervoor is een Routekaart ontwikkeld. Onderdeel van de Routekaart is het proces van assessment waarin onderzocht wordt welke barrières/functioneringsproblemen het kind/de jongere ervaart bij het communiceren met anderen; wat zijn/haar behoeften en wensen zijn wat betreft het communiceren en welke mogelijkheden de persoon heeft om, eventueel met behulp van een COH, te kunnen communiceren in alledaagse levenssituaties.
DOCUMENT
Background: Shared decision-making is one key element of interprofessional collaboration. Communication is often considered to be the main reason for inefficient or ineffective collaboration. Little is known about group dynamics in the process of shared decision-making in a team with professionals, including the patient or their parent. This study aimed to evaluate just that. Methods: Simulation-based training was provided for groups of medical and allied health profession students from universities across the globe. In an overt ethnographic research design, passive observations were made to ensure careful observations and accurate reporting. The training offered the context to directly experience the behaviors and interactions of a group of people. Results: Overall, 39 different goals were defined in different orders of prioritizing and with different time frames or intervention ideas. Shared decision-making was lacking, and groups chose to convince the parents when a conflict arose. Group dynamics made parents verbally agree with professionals, although their non-verbal communication was not in congruence with that. Conclusions: The outcome and goalsetting of an interprofessional meeting are highly influenced by group dynamics. The vision, structure, process, and results of the meeting are affected by multiple inter- or intrapersonal factors.
DOCUMENT
Background: Concepts such as participation and environment may differ across cultures. Consequently, to use a measure like the Participation and Environment Measure for Children and Youth (PEM-CY) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The aim of this study was to cross-culturally translate and adapt the PEM-CY into German as it is used in Germany, Austria and Switzerland. Methods: Fifteen parents of children and adolescents with disabilities from three German speaking countries participated in three rounds of think-aloud interviews. We followed the procedure of cultural equivalence guidelines including two additional steps. Data was analyzed by content analysis using semantic, idiomatic, experiential and conceptual equivalence. Results: Results show adaptations mainly focused on experiential and conceptual equivalence, with conceptual equivalence being the most challenging to reach. Examples of experiential equivalence included adapting the examples of activities in the PEM-CY to reflect those typical in German speaking countries. Conceptual equivalence mainly addressed aspects of “involvement” and “environment” of children and adolescents and was reached through adaptations such as enhanced instructions and structures, and additional definitions. Conclusions: This study presents a cross-cultural translation and adaptation process to develop a German version of the PEM-CY that is suitable for Germany, Austria and Switzerland. Using a modified cultural adaptation process, a culturally adapted version of PEM-CY (German) is now available for research, practice and further validation.
DOCUMENT
