Dataset Information

A feasibility study demonstrating that independence, quality of life, and adaptive behavioral skills can improve in children with Down syndrome after using assistive technology.

ABSTRACT: Enhancing independence and quality of life are key modifiable outcomes that are short- and long-term goals for children with Down syndrome and for their parents. Here we report the outcome of a 4-week feasibility study in a cohort of 26 children with Down Syndrome, 7-17 years old, who used an assistive technology approach that incorporated smart device software and step-by-step pictures (the MapHabit System). Parents reported improvements in children's activities of daily living, quality of life, and independence. They recommended this technology to other families. This report and its findings underscore the feasibility of using assistive technology in children with Down syndrome within home and family settings. A limiting factor is whether participants who did not complete the study, and thus were not included in analyses, might have impacted the study outcomes. The current findings that assistive technology can be used successfully and effectively in family and home settings set the stage for more informative systematic studies using assistive technology for this population. Trial registration: The clinical trial is registered with ClinicalTrials.gov Registration number: NCT05343468.

SUBMITTER: White K

PROVIDER: S-EPMC10208506 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A feasibility study demonstrating that independence, quality of life, and adaptive behavioral skills can improve in children with Down syndrome after using assistive technology.

White Kaylin K Han Samuel S SS Britton Angela A Hendrix James J

PloS one 20230524 5

Enhancing independence and quality of life are key modifiable outcomes that are short- and long-term goals for children with Down syndrome and for their parents. Here we report the outcome of a 4-week feasibility study in a cohort of 26 children with Down Syndrome, 7-17 years old, who used an assistive technology approach that incorporated smart device software and step-by-step pictures (the MapHabit System). Parents reported improvements in children's activities of daily living, quality of life ...[more]

PMID: 37224142

Similar Datasets

Project description:BackgroundMobile health (mHealth) apps using novel visual mapping assistive technology can allow users to develop personalized maps that aid people living with cognitive impairment in the recall of steps needed to independently complete activities of daily living (ADLs), such as bathing, toileting, and dressing.ObjectiveThis study aims to determine the feasibility and preliminary impact of an mHealth assistive technology app providing guidance to aid individuals living with cognitive impairment in the recall of steps to independently complete ADLs.MethodsA total of 14 Veterans (mean age 65 SD 9.5 years; 14/14, 100% male; 10/14, 71.4% Black) and 8 non-Veterans (mean age 78, SD 10.3 years; 5/8, 62.5% male; 8/8, 100% Black) were recruited and enrolled from the Department of Veterans Affairs (VA) and non-VA cognitive care clinics. A visual mapping software program, MapHabit, was used to generate a series of personalized visual map templates focused on ADLs created within the MapHabit app. The visual maps were accessed through a tablet device. A 19-item exit questionnaire was administered to the participants to assess perceived improvement in their functional ability after using the MapHabit system for 3 months.ResultsA total of 13 (93%) VA clinic participants and 8 (100%) non-VA clinic participants completed the 3-month study. Baseline cognitive testing indicated impaired to significantly impaired cognitive function. After 3 months of using the MapHabit system, VA clinic participants reported perceived improvement in social engagement (P=.01) and performance of ADLs (P=.05) compared to the baseline, whereas non-VA clinic participants reported improvements in the performance of ADLs (P=.02), mood (P=.04), social engagement (P=.02), and memory (P=.02). All study participants reported they would recommend the MapHabit system to a colleague, and 85% (11/14) of VA and 100% (8/8) of non-VA clinic participants reported a willingness to participate in a future study.ConclusionsOlder VA and non-VA clinic participants with cognitive impairment were willing to use an mHealth app to assist with the completion of ADLs, and they reported positive preliminary effects. A larger study is warranted to assess the efficacy in the setting of a randomized controlled trial.

Project description:BackgroundDown syndrome (DS) is the most common congenital neurodevelopmental disorder, present in about 1 in every 700 live births. Despite its prevalence, literature exploring the neurobiology underlying DS and how this neurobiology is related to behavior is limited. This study fills this gap by examining cortical volumes and behavioral correlates in school-age children with DS.MethodsSchool-age children (mean = 9.7 years ± 1.1) underwent comprehensive assessments, including cognitive and adaptive assessments, as well as an MRI scan without the use of sedation. Children with DS (n = 35) were compared to available samples of typically developing (TD; n = 80) and ASD children (n = 29). ANOVAs were conducted to compare groups on cognitive and adaptive assessments. ANCOVAs (covarying for age, sex, and total cerebral volume; TCV) compared cortical brain volumes between groups. Correlations between behavioral metrics and cortical and cerebellar volumes (separately for gray (GM) and white matter (WM)) were conducted separately by group.ResultsAs expected, children with DS had significantly lower cognitive skills compared to ASD and TD children. Daily Living adaptive skills were comparable between ASD children and children with DS, and both groups scored lower than TD children. Children with DS exhibited a smaller TCV compared to ASD and TD children. Additionally, when controlling for TCV, age, and sex, children with DS had significantly smaller total GM and tissue volumes. Cerebellum volumes were significantly correlated with Daily Living adaptive behaviors in the DS group only.ConclusionsDespite children with DS exhibiting lower cognitive skills and smaller brain volume overall than children with ASD, their deficits in Socialization and Daily Living adaptive skills are comparable. Differences in lobar volumes (e.g., Right Frontal GM/WM, Left Frontal WM, and Left and Right Temporal WM) were observed above and beyond overall differences in total volume. The correlation between cerebellum volumes and Daily Living adaptive behaviors in the DS group provides a novel area to explore in future research.

Project description:BackgroundThe World Health Organization claimed that measuring outcomes is necessary to understand the benefits of assistive technology (AT) and create evidence-based policies and systems to ensure universal access to it. In clinical practice, there is an increasing need for standardized methods to track AT interventions using outcome assessments.ObjectiveThis review provides an overview of the available outcome measures that can be used at the follow-up stage of any AT intervention and integrated into daily clinical or service practice.MethodsWe systematically searched for original manuscripts regarding available and used AT outcome measures by searching for titles and abstracts in the PubMed, Scopus, and Web of Science databases up to March 2023.ResultsWe analyzed 955 articles, of which 50 (5.2%) were included in the review. Within these, 53 instruments have been mentioned and used to provide an AT outcome assessment. The most widely used tool is the Quebec User Evaluation of Satisfaction with Assistive Technology, followed by the Psychosocial Impact of Assistive Technology Scale. Moreover, the identified measures addressed 8 AT outcome domains: functional efficacy, satisfaction, psychosocial impact, caregiver burden, quality of life, participation, confidence, and usability. The AT category Assistive products for activities and participation relating to personal mobility and transportation was the most involved in the reviewed articles.ConclusionsAmong the 53 cited instruments, only 17 (32%) scales were designed to evaluate specifically assistive devices. Moreover, 64% (34/53) of the instruments were only mentioned once to denote poor uniformity and concordance in the instruments to be used, limiting the possibility of comparing the results of studies. This work could represent a good guide for promoting the use of validated AT outcome measures in clinical practice that can be helpful to AT assessment teams in their everyday activities and the improvement of clinical practice.

Project description:BackgroundThe COVID-19 pandemic has had a major impact on families' daily routines and psychosocial well-being, and technology has played a key role in providing socially distanced health care services.ObjectiveThe first objective of this paper was to describe the content and delivery of a single-session, internet-based cognitive behavioral therapy (iCBT) intervention, which has been developed to help parents cope with children's anxiety and manage daily situations with their children. The second objective was to report user adherence and satisfaction among the first participants who completed the intervention.MethodsThe Let's Cope Together intervention has been developed by our research group. It combines evidence-based CBT elements, such as psychoeducation and skills to manage anxiety, with parent training programs that strengthen how parents interact with their child and handle daily situations. A pre-post design was used to examine user satisfaction and the skills the parents learned. Participants were recruited using advertisements, media activity, day care centers, and schools and asked about background characteristics, emotional symptoms, and parenting practices before they underwent the iCBT. After they completed the 7 themes, they were asked what new parenting skills they had learned from the iCBT and how satisfied they were with the program.ResultsOf the 602 participants who filled in the baseline survey, 196 (32.6%) completed the program's 7 themes, and 189 (31.4%) completed the postintervention survey. Most (138/189, 73.0%) of the participants who completed the postintervention survey were satisfied with the program and had learned skills that eased both their anxiety (141/189, 74.6%) and their children's anxiety (157/189, 83.1%). The majority (157/189, 83.1%) reported that they learned how to organize their daily routines better, and just over one-half (100/189, 53.0%) reported that the program improved how they planned each day with their children.ConclusionsThe single-session iCBT helped parents to face the psychological demands of the COVID-19 pandemic. Future studies should determine how the participation rate and adherence can be optimized in digital, universal interventions. This will help to determine what kinds of programs should be developed, including their content and delivery.

Dataset Information

A feasibility study demonstrating that independence, quality of life, and adaptive behavioral skills can improve in children with Down syndrome after using assistive technology.

Publications

A feasibility study demonstrating that independence, quality of life, and adaptive behavioral skills can improve in children with Down syndrome after using assistive technology.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets