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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT05771727

Enrollment

134

Registered

2023-03-16

Start date

2021-07-01

Completion date

2021-10-01

Last updated

2023-03-16

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Neuromuscular Diseases

Brief 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.

Detailed 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).

Interventions

OTHERsurvey

Study design

Observational model

FAMILY_BASED

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

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.

Design outcomes

Primary

Measure	Time frame	Description
The questionnaire which created by the researchers	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

Measure	Time frame	Description
Content of the 9-Item Caregiver COVID-19 Limitations Scale (CCLS-9)	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.

Countries

Turkey (Türkiye)

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026