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

NCT ID: NCT05771727

Last Updated: 2023-03-16

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

134 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-07-01

Study Completion Date

2021-10-01

Brief Summary

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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

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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).

Conditions

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Neuromuscular Diseases

Study Design

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Observational Model Type

FAMILY_BASED

Study Time Perspective

PROSPECTIVE

Study Groups

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Parents of children with pediatric neuromuscular diseases

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

survey

Intervention Type 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).

Interventions

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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).

Intervention Type OTHER

Eligibility Criteria

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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.
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Hacettepe University

OTHER

Sponsor Role lead

Responsible Party

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Merve Bora

Physiotherapist

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Hacettepe University

Ankara, , Turkey (Türkiye)

Site Status

Countries

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Turkey (Türkiye)

Other Identifiers

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GO 21/722

Identifier Type: -

Identifier Source: org_study_id

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