Cerebral PalsycaregiversNCT05228405
Awareness Levels of Caregivers of Disabled Children
An observational study of Cerebral Palsy and Caregiver Burden, run by Kahramanmaras Sutcu Imam University at 1 site in Turkey (Türkiye).
Trial 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. Read more about this study
- Who is it for?
- Ages 4 to 20 years
- Conditions the study is for
- Cerebral Palsy, Caregiver Burden, Disabilities Multiple
- What is being tested?
- All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness
- How many people
- 56 participants
- Where
- 1 siteTurkey (Türkiye)
- Study dates
- 15 Apr 2019to 15 Aug 2019
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 4 to 20 years
- All sexes
- No healthy volunteers
- Child, Adult
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
Who may be able to join
- 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
Who cannot join
- Parent has any diagnosed mental illness
Trial locations and contacts
1 site in 1 country.
Turkey (Türkiye)1 site
Kahramanmaras Sutcu Imam University
Kahramanmaraş, 46100
About this study
Official title: Awareness Levels of Caregivers of Disabled Children About Children's Illness, Physiotherapy and Sports Activities
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.
Read the 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.
- Conditions
- Cerebral Palsy, Caregiver Burden, Disabilities Multiple, Muscular Dystrophy, Down Syndrome, Spina Bifida
- Being tested
- All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness
- Keywords
- awareness, caregiver, disabled, physiotherapy, sports
- Medical subject headings
- Cerebral Palsy, Caregiver Burden, Muscular Dystrophies, Down Syndrome, Spinal Dysraphism
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports AwarenessOther
Also called scale
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
| Study group | Role | What they receive |
|---|---|---|
| 1/caregivers of disabled children | 1/Caregivers of disabled children will be assessed by the questionnaire of the Disease, Physiotherapy and Sports Awareness Receives: Other: All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: 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.
Measured: 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.
Measured: 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.
Measured: first day of assessment
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted8 Feb 2022
- Study start15 Apr 2019
- Primary completion1 Aug 2019
- Study completion15 Aug 2019
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Cerebral PalsyStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Family based
- Time perspective
- Prospective
- Enrolment
- 56 participants (actual)
Sponsor and investigators
- Lead sponsor
- Kahramanmaras Sutcu Imam University
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Hatice Adiguzel, Kahramanmaras Sutcu Imam University
- Investigators
- hatice adıgüzel, PhD, Principal investigator, Kahramanmaras Sutcu Imam University
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05228405
- Sponsor's protocol ID
- KSU5
- Acronym
- caregivers
- Status last verified
- Feb 2022
- First submitted
- 23 Jan 2022
- Last updated
- 8 Feb 2022
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 8 Feb 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Awareness Levels of Caregivers of Disabled Children About Children's Illness, Physiotherapy and Sports Activities
- ClinicalTrials.gov ID
- NCT05228405
- Acronym / sponsor ID
- caregivers / KSU5
- Conditions
- Cerebral Palsy, Caregiver Burden, Disabilities Multiple, Muscular Dystrophy, Down Syndrome, Spina Bifida
- Keywords
- awareness, caregiver, disabled, physiotherapy, sports
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 56 participants (actual)
- Lead sponsor
- Kahramanmaras Sutcu Imam UniversityUniversity, hospital or other
- Study start
- 15 Apr 2019 (actual)
- Primary completion
- 1 Aug 2019 (actual)
- Study completion
- 15 Aug 2019 (actual)
- First posted
- 8 Feb 2022 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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 design
- Observational model
- Family based
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| 1/caregivers of disabled children | – | Other: All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness1/Caregivers of disabled children will be assessed by the questionnaire of the Disease, Physiotherapy and Sports Awareness |
Who may qualify
- Ages
- 4 to 20 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
- 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
Key inclusion criteria (2 listed)
- 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
Key exclusion criteria (1 listed)
- Parent has any diagnosed mental illness
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports AwarenessAlso: scaleAll 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 | Other | 1/caregivers of disabled children |
Primary outcome
Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for cerebral palsy)
Time frame: 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)
Time frame: 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)
Time frame: 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)
Time frame: 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.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 8 Feb 2022.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
hatice adıgüzel, PhD principal investigator
Kahramanmaras Sutcu Imam University
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Cerebral Palsy and Caregiver Burden, run by Kahramanmaras Sutcu Imam University at 1 site in Turkey (Türkiye).
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 8 Feb 2022. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Turkey (Türkiye). Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Questionnaire of Disease, Physiotherapy and Sports Awareness (QODPSA) (for cerebral palsy) (time frame: first day of assessment). The study lists 4 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 8 Feb 2022.