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
• Status: Completed
• 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
• 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
• 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.

Related Conditions & MeSH terms

• COVID-19
• Neuromuscular Diseases

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