Living with tics: Nursing care of pediatric tourette syndrome.
Mei-Yin Lee
https://pubmed.ncbi.nlm.nih.gov/34710638Actively Recruiting
Phase Not Applicable
Age: 20Years - 60Years
All Genders
Healthy Volunteers
ID06613126
Constructing and Evaluating the Effectiveness of an Intelligent Interaction System for Symptom Management on the Care Needs and Related Factors of Children With Tourette Syndrome and Their Parents
Led by National Taipei University of Nursing and Health Sciences · Updated on 2024-10-03
180
Participants Needed
1
Research Sites
52 weeks
Total Duration
On this page
Sponsors
N
National Taipei University of Nursing and Health Sciences
Lead Sponsor
C
Chang Gung Memorial Hospital
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are evaluating a symptom management application designed to help parents of children aged 6 to 12 years with Tourette Syndrome (TS). The study aims to improve parental care needs, sleep quality, anxiety levels, quality of life, and the parent-child relationship. This randomized controlled trial compares the effects of the app with traditional outpatient verbal and paper health education guidance. Parents in the experimental group use the TS symptom management app for four weeks, recording their child's tic patterns and treatments at least twice weekly and completing educational readings on TS care. The control group continues receiving standard outpatient verbal and paper-based health education. Questionnaires assessing care needs, quality of life, sleep, anxiety, parent-child relationship, and tic severity are completed before, immediately after, and at one and three months post-intervention. The experimental group also completes a technology acceptance questionnaire during the final follow-up. Participants are asked to complete multiple questionnaires including the Care Needs Scale, WHO Quality of Life, Pittsburgh Sleep Quality Index, Beck Anxiety Inventory, Parent-Child Relationship Quality Inventory, and Yale Global Tic Severity Scale at specified intervals. The study measures changes from baseline to assess the app's impact on parental care abilities and children's symptom severity. The trial is sponsored by the National Taipei University of Nursing and Health Sciences and runs until July 2026.
CONDITIONS
Brief Title
Effectiveness of Symptom Management Application on Parental Care Ability of Children With Tourette Syndrome
Who Can Participate
Age: 20Years - 60Years
All Genders
Healthy Volunteers
Eligibility Criteria
You may qualify if you...
- Parents of children between 6 and 12 years old diagnosed with Tourette Syndrome by pediatricians
- Parents who are the primary caregivers
- Parents with normal cognitive functioning who can communicate in Mandarin
You will not qualify if you...
- Children with Tourette Syndrome who have intellectual disability
- Children with Tourette Syndrome who have critical diseases
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Treatment
Duration - 4 weeks
Participants in the experimental group use a symptom management app for Tourette Syndrome for four weeks, recording tic patterns and treatments at least twice a week and completing relevant readings. Participants in the control group receive outpatient verbal and paper health education guidance.
At least twice-weekly app interactions for the experimental group; outpatient guidance as scheduled for the control group
Follow-up
Duration - 3 months after intervention
Participants complete questionnaires immediately after the intervention, at one month, and at three months to assess care needs, quality of life, sleep quality, anxiety, parent-child relationship, and tic severity. The experimental group also completes a technology acceptance questionnaire at the three-month posttest.
3 visits (immediately post-intervention, 1 month, and 3 months post-intervention)
Trial Site Locations
Total: 1 location
1
Chang Gung Memorial Hospital
Taoyuan City, Taiwan, 333
Actively Recruiting
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Research Team
M
Mei-Yin Lee, PhD
How is the study designed?
Study Type
INTERVENTIONAL
Masking
SINGLE
Allocation
RANDOMIZED
Model
PARALLEL
Primary Purpose
HEALTH_SERVICES_RESEARCH
Number of Arms
2
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Published Research Related To This Trial
Psychosocial experiences in youth with Tourette syndrome: a systematic review and meta-synthesis.
Mei-Yin Lee, Huei-Shyong Wang, Chen-Jung Chen
https://pubmed.ncbi.nlm.nih.gov/38129352Parenting Interventions for Children with Tic Disorders: Professionals' Perspectives.
Gemma A L Evans, Anja Wittkowski, Hannah Butler...
https://pubmed.ncbi.nlm.nih.gov/27110085A qualitative exploration of the daily experiences and challenges faced by parents and caregivers of children with Tourette's syndrome.
Amanda K Ludlow, Rachel Brown, Joerg Schulz
https://pubmed.ncbi.nlm.nih.gov/27682339Practice guideline recommendations summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders.
Tamara Pringsheim, Michael S Okun, Kirsten Müller-Vahl...
https://pubmed.ncbi.nlm.nih.gov/31061208Academic, Interpersonal, Recreational, and Family Impairment in Children with Tourette Syndrome and Attention-Deficit/Hyperactivity Disorder.
Emily J Ricketts, Sara Beth Wolicki, Melissa L Danielson...
https://pubmed.ncbi.nlm.nih.gov/33385257