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NCT05771727 Clinical Trial

Impact of Covid-19 Pandemic on Children With Neuromuscular Disease and Their Parents in Turkey: Parent Perspective

Neuromuscular Diseases Clinical Trial

Official title:
Impact of Covid-19 Pandemic on Children With Neuromuscular Disease and Their Parents in Turkey: Parent Perspective

Clinical Trial Details — Status: Completed

Administrative data
NCT number NCT05771727
Other study ID # GO 21/722
Secondary ID
Status Completed
Phase
First received
Last updated
Start date July 1, 2021
Est. completion date October 1, 2021

Study information
Verified date March 2023
Source Hacettepe University
Contact n/a
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

Parents of children with neuromuscular disease have been already at risk of depression, anxiety and burden. Additionally, the daily lives of children with neuromuscular disease and their parents have been significantly affected by the COVID-19 pandemic. Therefore, this study investigated parents' perspective on the effect of the COVID-19 pandemic on children with neuromuscular diseases and themselves.

Description:

The 55-item survey created by the researchers was applied online to determine the psychological and physical effects of COVID-19 on neuromuscular patients and their families. This survey also included the Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9).

Recruitment information / eligibility
Status Completed
Enrollment 134
Est. completion date October 1, 2021
Est. primary completion date August 1, 2021
Accepts healthy volunteers
Gender All
Age group N/A and older
Eligibility Inclusion Criteria: - taking care for a child with NMD whose age was between 0-18 years, - having the ability to read and write Turkish language, - having access to phone or e-mail, - being volunteer. Exclusion Criteria: - having a child who have an additional diagnosis besides NMD and taking care of any other person in the family.

Study Design

Related Conditions & MeSH terms

Intervention

Other:
• survey
The 55-item survey created by the researchers was applied online to determine the psychological and physical effects of COVID-19 on neuromuscular patients and their families. This survey also included the Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9).

Locations
Country Name City State
Turkey Hacettepe University Ankara

Sponsors (1)
Lead Sponsor Collaborator
Hacettepe University

Country where clinical trial is conducted

Turkey, 

Outcome
Type Measure Description Time frame Safety issue
Primary The questionnaire which created by the researchers The 55-item survey created by the researchers was applied online to determine the psychological and physical effects of COVID-19 on neuromuscular patients and their families. 30 minutes
Secondary Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9) This scale consists of 9 items and has a scoring system between 1-10 for each item which is chosen by the caregiver. According to the CCLS-9 scale, the lowest anxiety, stress or burden of the caregiver scored as 1 while the highest level was 10. 5 minutes
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