Skip to main content
OpenTrials
Completed

NCT Number: NCT05771727

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

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.

Completed

Looking for future studies?

Notify Me

Key information

Conditions

Neuromuscular Diseases Nervous System Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

Hacettepe University

Ankara, 06680, Turkey (Türkiye)

About this study

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).

Who can participate

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Survey

Other

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).

Primary outcomes

  1. The questionnaire which created by the researchers

    Time frame: 30 minutes

    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.

Secondary outcomes

  1. Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9)

    Time frame: 5 minutes

    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.

Sponsors and collaborators

Lead sponsor

Hacettepe University

Other

Registry information

Important dates

Study start
2021
Primary completion
2021
Study completion
2021
First posted
Mar 16, 2023
Registry last updated
Mar 16, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Related clinical trials

Published trials that share one or more normalized conditions with this study.