Awareness Levels of Caregivers of Disabled Children

Completed

• Conditions: Cerebral Palsy; Disabilities Multiple; Down Syndrome; Spina Bifida; Caregiver Burden; Muscular Dystrophy
• Interventions: Other: All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness

• Registration Number: NCT05228405
• Lead Sponsor: Kahramanmaras Sutcu Imam University

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.

Detailed Description

Parents spare more time for the care and health of their disabled children, limited time spent with other family members, families do not have much information about their children's disabilities after the diagnosis of disability, limited life in children's vision, hearing, speech, mental and physical activities, functional losses this increases the difficulties. Self-care problems such as sleeping, eating, drooling, inactivity and dressing skills in children with CP, difficulties experienced by children with mental disabilities in making friends and acting independently, problems in going to school, financial losses during the creation of an environment and environment suitable for their disability, frequently They face many difficulties such as adaptation problems and behavioral problems, and the perspective that society has formed against them due to their differences in body characteristics. As the life span of people with disabilities increases, the financial, moral, physical and social difficulties of their families increase, and over time, psychological and behavioral barriers occur in family members. These barriers are increasing in developing countries. Social support is one of the most important factors that facilitate successful adaptation to the presence of a child with a disability and reduce the level of stress they feel in their lives. Social support refers to the help an individual receives from other people. It can be defined as information that enables a person to have the belief that they are loved, valued, accepted and part of an interpersonal support network. Individuals can receive social support from their spouse, family and friends, as well as from leisure activities, recreational activities, community programs, and professionals and institutions. Social support or the perception of social support plays an important role in maintaining the mental health of families. Studies on social support show that as social support of individuals with disabled children increases, their psychological symptoms, hopelessness levels, depressive symptoms and stress levels decrease; revealed that their adjustment and well-being increased. Küçükahmet stated that the institutions in that society have an impact on the upbringing and development of children in every society and that one of these institutions is the family.Today, it is known that family-centered approaches are the most successful in terms of rehabilitation of individuals with disabilities. Because it is known that the family is of great importance in terms of ensuring the active participation of the child in life. Therefore, while interdisciplinary treatments continue for the treatment of individuals, the success of rehabilitation depends on interacting with the family, identifying and supporting their needs and problems. For this reason, with this study, it is planned to investigate whether the parents know enough about the physiotherapy program applied to their children, what level of knowledge they have about their children's disease, and whether their disabled children participate in sports activities. The aim of this study is to measure the level of awareness of parents with disabled children about disease, physiotherapy and sports.

Study Timeline

• Study Start: 2019-04-15
• Primary Completion: 2019-08-01
• Study Completion: 2019-08-15
• Study First Submitted: 2022-01-23
• Status Verified: 2022-02
• Study First Submitted QC: 2022-02-03
• Last Update Submitted: 2022-02-03
• Study First Posted: 2022-02-08
• Last Update Posted: 2022-02-08

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 56

Inclusion Criteria

• 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

Exclusion Criteria

• Parent has any diagnosed mental illness

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
1/caregivers of disabled children	All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness	1/Caregivers of disabled children will be assessed by the questionnaire of the Disease, Physiotherapy and Sports Awareness

Primary Outcome Measures

Name	Time	Method
Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for cerebral palsy)	first day of assessment	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.
Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for muscular dystrophy)	first day of assessment	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.
Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for spina bifida)	first day of assessment	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.
Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for down syndrome)	first day of assessment	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.

Trial Locations

Locations (1)

Kahramanmaras Sutcu Imam University; 🇹🇷 Kahramanmaras, Turkey