Neurodevelopmental Disorder, Tic Disorder, Tourette Syndrome
Conditions
Keywords
symptom management, Application, parent, children with Tourette Syndrome
Brief summary
This study developed a Tourette Syndrome (TS) symptom management application (APP) to improve the care needs, sleep quality, anxiety, quality of life, and parenting relationship of parents of children with Tourette Syndrome.
Detailed description
Tourette syndrome (TS) is a common chronic neurodevelopmental disorder in children. Parents play critical roles in helping to manage their child's symptoms, leading to several issues associated with care needs and the parent-child interaction. This study adopted a randomized control study design. The investigators developed a TS symptom management APP based on symptom management theory and the relevant literature. The research subjects were parents of children with TS between 6 and 12 years old. The experimental group received TS symptom management APP intervention for four weeks. The experimental group recorded the patterns and treatments of tics at least twice a week and completed relevant readings on TS care information during these four weeks. The control group continued to receive outpatient verbal and paper health education guidance from healthcare providers. The participants in both groups were requested to complete the following questionnaires, including the care needs scale, WHOQOL-BREF, Pittsburgh Sleep Quality Index (Chinese version), Beck Anxiety Inventory (Chinese version), Parent-Child Relationship Quality Inventory, and the Yale Global Tic Severity Scale. These questionnaires were completed before the intervention and directly after the four-week intervention. The participants were completed again one month and three months after the intervention. To understand the users' satisfaction with this APP, only the participants in the experimental group were requested to complete the Inventory of Technology Acceptance Model when completing the questionnaires during the third posttest. The goal was to strengthen parents' symptom management ability and improve their psychosocial functions and children's disease severity.
Interventions
BEHAVIORALSymptom Management APP group
Based on symptom management theory and the relevant literature, the researcher designed a symptom management APP. The APP includes a symptom recording system, symptom management skills, and Tourette Syndrome knowledge information to facilitate parents' and children's joint learning.
OTHERhealth education instructions group
To receive outpatient verbal and paper health education guidance from healthcare providers.
Sponsors
Chang Gung Memorial Hospital
National Taipei University of Nursing and Health Sciences
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
SINGLE (Outcomes Assessor)
Eligibility
Sex/Gender
ALL
Age
20 Years to 60 Years
Healthy volunteers
Yes
Inclusion criteria
1. Parents of children between 6-12 years old who are diagnosed with Tourette Syndrome by pediatricians. 2. Parents who are the primary caregivers 3. Parents with normal cognitive functioning who can communicate in Mandarin.
Exclusion criteria
1\. Children with Tourette Syndrome who are suffering from intellectual disability or critical diseases.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Care needs scale for parents of children with Tourette Syndrome (CNS-PCTS) | Change from baseline degree of CNS-PCTS after intervention, 1 month and 3 months. | The CNS-PCTS contained 13 items, with a score range of 13 to 52. A higher CNS-PCTS score indicated that the parents required greater care needs. |
| Parent-Child Relationship Quality Inventory | Change from baseline degree of parent-child relationship quality inventory after intervention, 1 month and 3 months. | The parent-child relationship quality inventory contained 30 items, with a score range of 20 to 100. A higher parent-child relationship quality inventory indicated that the parents perceived greater parent-child relationship quality. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Beck Anxiety Inventory (Chinese version) | Change from baseline degree of Beck Anxiety Inventory (Chinese version) after intervention, 1 month and 3 months. | There are 21 items in the Beck Anxiety Inventory (Chinese version), which measures the severity of anxiety by subjects' self-report. |
| Short version of the World Health Organization Quality of Life (WHOQOL-BREF) | Change from baseline degree of WHOQOL-BREF after intervention, 1 month and 3 months. | The WHOQOL-BREF contained 28 items, with a score range of 28 to 140. A higher WHOQOL-BREF score indicated that the parents perceived a better quality of life. |
| Pittsburgh Sleep Quality Index (Chinese version) | Change from baseline degree of Pittsburgh Sleep Quality Index (Chinese version) after intervention, 1 month and 3 months. | The scoring range is 0-21; a total score above 5 represents poor sleep quality, a score below or equal to 5 means good sleep quality. |
| Yale Global Tic Severity Scale(YGTSS) | Change from baseline degree of YGTSS after intervention, 1 month and 3 months. | The Yale Global Tic Severity Scale will used in this research to evaluate adolescents' tic severity. The Yale Global Tic Severity Scale has a total score ranging from 0 to 100, with the high score indicating a higher tics severity. |
Countries
Taiwan
Contacts
Primary ContactMei-Yin Lee, PhD
Outcome results
None listed