Awareness Levels of Caregivers of Disabled Children
Condition: Cerebral Palsy; Caregiver Burden; Disabilities Multiple; Muscular Dystrophy; Down Syndrome; Spina Bifida
MeSH terms: Muscular Dystrophies; Cerebral Palsy; Down Syndrome; Spinal Dysraphism; Caregiver Burden
Study type: Observational

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.
    

Intervention name(s): All of the disabled children's caregivers will answer the Questionnaire of Disease, Physiotherapy and Sports Awareness
Intervention type(s): Other
Intervention description(s): 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
Other intervention name(s): scale
Observational model: Family-Based
Time perspective: Prospective
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
      
Keywords: awareness, caregiver, disabled, physiotherapy, sports