Purpose: This study aims to systematically identify items that measure commu-nicative participation from measurement instruments that measure (aspects of) communication and/or participation in children and adolescents (5–18 years old) with communication disorders, for developing an item bank. Method: A systematic literature search was performed in MEDLINE and Embase to search for patient-reported outcome measures (PROMs) or parent reports measuring aspects of communication and/or participation in children and adolescents. The individual items of the included measurement instruments were reviewed on whether they measure communicative participation. The items were then classified into one of the International Classification of Functioning, Disability and Health (ICF) for Children and Youth (World Health Organization, 2007) domains of activities and participation. Results: A total of 29 instruments were found, nine PROMs and 20 parent reports. One hundred forty-five items were identified that measure communica-tive participation. From these 145 items, 74 were retrieved from PROMs (51%), and 71 were retrieved from parent reports (49%). The majority of items were classified in ICF Domain 7, interpersonal interactions and relationships (73.8%), followed by Domain 8, major life areas (13.8%), and Domain 9, community, social, and civic life (8.3%). Only a few items were found in Domains 5 and 6, and none was found in Domains 1, 2, and 4. Conclusions: We identified 145 items potentially useful for developing an item bank addressing communicative participation in children and adolescents with communication disorders. However, item development in collaboration with the target population is needed to ensure that these items fully reflect the construct.
LINK
Purpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study with AYAs aged 14–25 years, diagnosed with ABI. The PedsQL™ Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL™4.0 Generic Core Scales were administered. Results: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (β 0.64, 95%CI 0.44, 0.85) and diminished QoL (β 0.87, 95%CI 0.72, 1.02). Conclusions: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL.
MULTIFILE
Background. A number of parenting programs, aimed at improving parenting competencies, have recently been adapted or designed with the use of online technologies. Although web-based services have been claimed to hold promise for parent support, a meta-analytic review of online parenting interventions is lacking. Method. A systematic review was undertaken of studies (n = 19), published between 2000 and 2010, that describe parenting programs of which the primary components were delivered online. Seven programs were adaptations of traditional, mostly evidencebased, parenting interventions, using the unique opportunities of internet technology. Twelve studies (with in total 54 outcomes, Ntot parents = 1,615 and Ntot children = 740) were included in a meta-analysis. Results. The meta-analysis showed a statistically signifi cant medium effect across parents outcomes (ES = 0.67; se = 0.25) and child outcomes (ES = 0.42; se = 0.15). Conclusions. The results of this review show that web-based parenting programs with new technologies offer opportunities for sharing social support, consulting professionals and training parental competencies. The metaanalytic results show that guided and self-guided online interventions can make a signifi cant positive contribution for parents and children. The relation with other metaanalyses in the domains of parent education and web-based interventions is discussed.
LINK
Digital technologies in public spaces have become more prescient, capable, and invisible. As a result, the need to explain and mediate these technologies has become more urgent. Current processes for designing digital trust interaction protocols, visual languages, and interfaces for the urban environment have been dominated by governing actors: policing, government, and tech-companies. When communities are involved in the design process, their participation is limited to formats these organisations prescribe. By default, these designs exclude the lived technological experiences of communities that use the built environment. The outcome is a lopsided appraisal of digital trust, and designs that are insufficiently transparent and equitable– and as a result, not understood and embraced by the communities who must use them. This design-research aims to develop prototypes that include how urban interactive technologies are ‘lived’ in the spaces where they are implemented. These experiences will be teased-out through site-specific aesthetic and performative actions, which in turn inform the design process. The envisioned contribution includes ways of ’doing’ to the field of situated design, and concrete prototypes for alternative digital trust protocols, visual languages, and interfaces. By flipping the current approach on its head, this research argues that the practical and ethical departure points for addressing digital ‘trust deficits’ are already within the diverse communities who use the built environment.
The clubfoot deformity is one of the most common congenital orthopaedic “conditions”. Worldwide approximately 100,000 children are born with unilateral or bilateral clubfoot every year. In the Netherlands the incidence is approximately 175 every year. This three dimensional deformity of the foot involves, equinus, varus, adductus, and cavus . Left untreated the clubfoot leads to deformity, functional disability and pain. Physical impairments of children with clubfoot might lead to limitations in activities and therefore impede a child’s participation. In clinical practice, the orthopaedic surgeon and physiotherapists are regularly consulted by (parents of) clubfoot patients for functional problems such as impaired walking and other daily activities. This does not only affect long-term and physical health of a child, it will also affect the development of social relationships and skills as well. Since walking is a main activity in children to be able to participate in daily life, our previous study (financially supported by SIA Raak Publiek) focussed on gait differences between children with clubfoot and controls. However, differences in gait characteristics do not necessarily lead to functional limitations and restricted participation. Therefore, providing insight in participation and a child’s performance in other activities than walking is necessary. Insight in a child’s participation will also indicate the functional outcome of the treatment, which on its turn could provide essential information concerning a possible relapse.. Early identification of a relapse is important since it could prevent the need for major surgical interventions. The occurrence of a relapse clubfoot will probably also lead to functional differences in the foot as well as problems during activity and participation. Therefore, the main focus of this study is the functional outcomes of physical activities and the characterisation of participation of children with clubfeet in daily activities of childhood.
