This article presents a review of the design methods and techniques that have been used to involve children with special educational needs and/or disabilities (SEND) in the technology design process. Situating the work within the established child-computer interaction research sub-field of participatory design, we examine the progress that has been made in relation to the participation of this specific child population. An extensive review of the literature in this area has been undertaken and we describe the different roles, responsibilities and activities that have been undertaken by both the child and adult participants within previous technology design projects. We also highlight the different types of outcome from this previous work involving children with SEND, exploring the impact the children's participation has had on both the resulting technology as well as the impact on the child participants themselves. Finally we conclude this review with a set of reporting recommendations for technology designers and researchers aiming to involve this population in future technology design projects.
Many individuals with neurological problems or anatomical abnormalities of the jaw, lips or oral cavity may drool, which can impact on health and quality of life. A thorough evaluation of the patient's history, examination of the oral region by a speech pathologist and, in individuals over 3 years, a dental examination is warranted. Questionnaires with established validity such as the Drooling Impact Scale are useful assessment tools. A hierarchical approach to treatment is taken from least invasive therapies, such as speech pathology, to more invasive, such as injection of botulinum neurotoxin type-A (BoNT-A) into the salivary glands (parotid and submandibular). The wishes of the individual and their carer are crucial considerations in determining the suitability of the intervention for the patient. In the presence of dysphagia and cerebral palsy (CP), careful assessment is required prior to the injection of BoNT-A. Favourable responses to intervention include a reduction in the secretion of saliva and in drooling, as well as psychosocial improvements. BoNT-A is usually well tolerated, although potential side effects should be discussed with the patient and carer.
AIM To describe the development and clinimetric properties of a new scale to evaluate changes in the impact of drooling in children with developmental disabilities.METHOD After examining the properties of potential items, 10 items were retained for inclusion in the final Drooling Impact Scale. The clinimetric properties of the scale were evaluated using data from two convenience samples of children attending a saliva-control clinic: a stable group (n=31, 22 males, nine females; mean age 10y 7mo, SD 4y 5mo, range 3y 6mo-18y 3mo; cerebral palsy [CP] n=17, intellectual disability n=10; non-ambulatory n=13, nonverbal n=12) and an intervention group (n=49, 29 males, 20 females; mean age 11y, SD 3y 6mo, range 3y 4mo-16y 10mo; CP n=31, intellectual disability n=15; non-ambulatory n=27, nonverbal n=28). To assess validity, changes in scores on the Drooling Impact Scale over time were compared with a carer's global rating of change using Pearson's correlations and t-tests. A concordance correlation coefficient was used to compute the level of agreement between assessments 1 month apart in stable children. Effect size, standardized response mean, Guyatt responsiveness statistic, and an unpaired t-test were used to estimate responsiveness. RESULTSThe correlation between the global rating and change in Drooling Impact Scale scores was 0.69 (p<0.001). The concordance correlation coefficient was 0.85. An effect size of 1.8, standardized response mean of 1.5, Guyatt responsiveness statistic of 1.4, and mean group difference of 23.5 (95% confidence interval 17.4-29.6) were obtained.
Aim To establish a prevalence estimate for drooling and explore factors associated with drooling in a population sample of children with cerebral palsy (CP) aged 7 to 14 years living in Victoria, Australia. Method A self‐report questionnaire was used to collect data on drooling from parents of children born between 1996 and 2001, and registered with the Victorian Cerebral Palsy Register. Results A total of 385 children (231 males, 154 females; mean age 10y 9mo [SD 1y 7mo], range 8–14y) were studied. The clinical type and distribution of CP were spastic (341), ataxic (16), dyskinetic (17), hypotonic (10), and unknown (1). Distribution in Gross Motor Function Classification System (GMFCS) levels was I (103), II (98), III (52), IV (63), V (61), and unknown (8). After adjustment for topographical pattern of motor impairment and GMFCS level, 40% were reported to have experienced drooling between 4 years of age and the time of completing the questionnaire. A significantly higher prevalence of drooling was found in children with poor gross motor function and in those with more severe presentations of CP, including poor head control, difficulty with eating, and inability to sustain lip closure (p<0.001 for each). Drooling was shown to be significantly associated with both intellectual disability and epilepsy in this group of children (p<0.001 for both). Interpretation With a prevalence of 40%, drooling is an important comorbidity in CP. It was considered severe in 15% of children. Poor oromotor function was associated with drooling and could be the target of interventions for this under‐researched problem.
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