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

Hacettepe University

Status: Completed

Conditions: Neuromuscular Diseases

Treatments: Other: survey

Study type: Observational

Funder types: Other

Identifiers

NCT05771727

GO 21/722

Details and patient eligibility

About

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.

Full 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).

Enrollment: 134 patients

Sex: All

Volunteers: No Healthy Volunteers

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.

Trial design

134 participants in 1 patient group

Parents of children with pediatric neuromuscular diseases

Description:

Parents of a total of 169 children with pediatric neuromuscular diseases, including 63 Duchnenne Muscular Dystrophy, 53 Spinal Muscular Atrophy and 18 other pediatric neuromuscular diseases (Congenital Muscular Dystrophy, Hereditary Motor and Sensory Neuropathy, Becker Muscular Dystrophy, Limb-Girdle Muscular Dystrophy, etc.) were included in the study

Treatment:

Other: survey