Awareness Levels of Caregivers of Disabled Children

NCT05228405 | Completed

• 1 other identifier: KSU5
• Study Type: observational
• Target: 56
• Locations: 1 country
• Sites: 1

Brief Summary

Disability-or apology; It is the inability or incompleteness of individuals to fulfill their roles in life, such as age, gender, culture, social and psychological factors, due to their inadequacies. Disability is not only a mental or physical health problem, but also a social problem. Having a disabled child and the type of disability present various difficulties to parents in the course of life. The difficulties in the care and education of these children are based on psychological, physical, social, economic and cultural realities.Families with diseases such as Cerebral Palsy (SP), Spina Bifida (SB), Muscular Dystrophy (MD), Down Syndrome (DS) are among them. Having a disabled child in the community can affect families in different ways. Every step of the education of disabled children (purpose, principle, education plan, game, school and family duties, etc.) is important for the disabled individual, family, teacher and society.

Conditions

Cerebral Palsy; Caregiver Burden; Disabilities Multiple; Muscular Dystrophy; Down Syndrome; Spina Bifida

Keywords

awareness, caregiver, disabled, physiotherapy, sports

Outcome Measures

Primary Outcomes (4)

• Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for cerebral palsy)

  All of the caregivers of the different disabled children will be assessed by the Questionnaire of Disease, Physiotherapy and Sports Awareness(QODPSA). There are questions for the parents of the children of the cerebral palsy. This questionnaire has only one correct answer. Survey questions are multiple choice. The content of the survey questions; consists of diseases, physiotherapy and sports. Higher scores on this scale indicate better awareness levels.

  first day of assessment

• Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for muscular dystrophy)

  All of the caregivers of the different disabled children will be assessed by the Questionnaire of Disease, Physiotherapy and Sports Awareness(QODPSA). There are questions for the parents of the children of the muscular dystrophy in this questionnaire. This questionnaire has only one correct answer. Every survey questions are multiple choice. The questionnaire consists of diseases, physiotherapy and sports. Higher scores on this scale indicate better awareness levels.

  first day of assessment

• Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for spina bifida)

  All of the caregivers of the different disabled children will be assessed by the Questionnaire of Disease, Physiotherapy and Sports Awareness(QODPSA). There are questions for the parents of the children of the spina bifida in this questionnaire. This questionnaire has only one correct answer. Every survey questions are multiple choice. The questionnaire consists of diseases, physiotherapy and sports. Higher scores on this scale indicate better awareness levels.

  first day of assessment

• Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for down syndrome)

  All of the caregivers of the different disabled children will be assessed by the Questionnaire of Disease, Physiotherapy and Sports Awareness(QODPSA). There are questions for the parents of the children of the down syndrome in this questionnaire. This questionnaire has only one correct answer. Every survey questions are multiple choice. The questionnaire consists of diseases, physiotherapy and sports. Higher scores on this scale indicate better awareness levels.

  first day of assessment

Study Arms (1)

1/caregivers of disabled children

1/Caregivers of disabled children will be assessed by the questionnaire of the Disease, Physiotherapy and Sports Awareness

Other: All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness

Interventions

All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness OTHER

All of the different type of disabled children's caregivers (cerebral palsy, muscular dystrophy, spina bifida and down syndrome) will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness

Also known as: scale

1/caregivers of disabled children

Eligibility Criteria

• Age: 4 Years - 20 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Probability Sample

Study Population

Caregivers of children with GMFCS Level (Gross Motor Function Classification System) 1-4, aged 4-20, with Cerebral Palsy (SP), Spina Bifida (SB), Down syndrome (DS) and Muscular Dystrophy (MD) diseases

You may qualify if:

• Caregivers of children with GMFCS Level (Gross Motor Function Classification System) 1-4, aged 4-20, with Cerebral Palsy (SP), Spina Bifida (SB), Down syndrome (DS) and Muscular Dystrophy (MD) diseases
• Voluntary participating parents who live in Gaziantep and have a child with one of the selected disease groups

You may not qualify if:

• Parent has any diagnosed mental illness

Sponsors & Collaborators

• Kahramanmaras Sutcu Imam University: lead

Study Sites (1)

Kahramanmaras Sutcu Imam University

Kahramanmaraş, 46100, Turkey (Türkiye)

Location

MeSH Terms

Conditions

Cerebral Palsy; Caregiver Burden; Muscular Dystrophies; Down Syndrome; Spinal Dysraphism

Interventions

Physical Therapy Modalities; Weights and Measures

Condition Hierarchy (Ancestors)

Brain Damage, Chronic; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Stress, Psychological; Behavioral Symptoms; Behavior; Muscular Disorders, Atrophic; Muscular Diseases; Musculoskeletal Diseases; Neuromuscular Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Intellectual Disability; Neurobehavioral Manifestations; Neurologic Manifestations; Abnormalities, Multiple; Congenital Abnormalities; Chromosome Disorders; Neural Tube Defects; Nervous System Malformations

Intervention Hierarchy (Ancestors)

Therapeutics; Rehabilitation; Investigative Techniques

Study Officials

• hatice adıgüzel, PhD

  Kahramanmaras Sutcu Imam University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Proffessor

Study Record Dates

• First Submitted: January 23, 2022
• First Posted: February 8, 2022
• Study Start: April 15, 2019
• Primary Completion: August 1, 2019
• Study Completion: August 15, 2019
• Last Updated: February 8, 2022

Record last verified: 2022-02

Data Sharing

• IPD Sharing: Will not share

Locations

TU (1)