Investigation of Parents' Anxiety Level and Health Related Quality of Life in Different Types of Physical Disabilities
Condition: Cerebral Palsy; Down Syndrome; Spina Bifida; Muscular Dystrophy; Parents
MeSH terms: Muscular Dystrophies; Cerebral Palsy; Down Syndrome; Spinal Dysraphism
Study type: Observational

Summary: 
      Disability brings many psychosocial problems in society. The effects of the health of a
      disabled child on the psychological health and quality of life of the family are inevitable.
      It has been shown that families with disabled children are exposed to chronic stress, have
      communication problems and social isolation between parents, and have to spend extra time for
      the care of children. It is reported in the literature that parents with mentally or
      physically handicapped children are more stressed and have higher levels of anxiety than
      parents without children with disabilities. Since activity limitations, participation
      restrictions, and social and physical barriers are different in each disability group,
      caregivers may be affected differently. Comparing the quality of life of caregivers of
      different disability groups and guiding the family in line with the results obtained is
      important for public health.As the time spent on care may vary in different types of
      disability, families' levels of distress and anxiety may also be different.There are no
      studies in the literature comparing the anxiety level of the parents of the individuals with
      Muscular Dystrophy (MD), Spina Bifida (SB), Cerebral Palsy (SP) and Down Syndrome (DS), which
      have a very important place in the permanent disability groups, by evaluating the family
      effect levels and health-related quality of life. . For this reason, this study was planned
      to investigate the quality of life, anxiety, level of disease and social effects of mothers
      with different physical disabilities.
    

Detailed description: 
      Disability is a life-long condition that involves different care needs and includes many
      psychosocial problems. Having a disabled child is for all family members; creates stress. In
      the studies, it was found that mothers with disabled children were more stressed and their
      anxiety levels were higher. There are many disabled people in Turkey and researches related
      to the caregiver, although there is not enough research on these people. Since activity
      limitations, participation restrictions and social and physical barriers are different in
      each disability group, caregivers' influences may also be different. Comparing the quality of
      life of caregivers of different disability groups and guiding the family in line with the
      results obtained is important for public health. It is known that the mothers of children
      with physical disabilities have more symptoms of depression depending on the functional
      levels of the children. The severity of depression was also found to be higher in people with
      physical disabilities than other disability groups. In addition, it has been shown that there
      is a positive relationship between the time spent on care of the child and the level of
      strain of caregivers. As the time spent on care may vary in different types of disability,
      families' levels of distress and anxiety may also be different. This is the rehabilitation
      services; In addition to the physiotherapy applied to physically disabled individuals, it is
      thought that the social needs of caregivers should be determined and met.In the literature,
      there are no studies comparing the effects of disease, anxiety levels and quality of life of
      parents with Muscular Dystrophy (MD), Spina Bifida (SB), Cerebral Palsy (SP) and Down
      Syndrome (DS). This study was planned to investigate the quality of life, anxiety level,
      family effects and social effects of the mothers with different physical disabilities.
    

Intervention name(s): Questionnaire
Intervention type(s): Other
Intervention description(s): Impact on Family Scale (IPFAM), WeeFIM Pediatric Functional Independence Measurement, Nottingham Health Profile. State-Trait Anxiety Inven¬tory (STAI-I and STAI-II), PEDI (Pediatric Evaulation of Disability Inventory)
Other intervention name(s): assesment
Observational model: Family-Based
Time perspective: Retrospective
Sampling method: Probability Sample
Study population: 
        Mothers of 80 cerebral palsy (SP), spina bifida (SP), muscular dystrophy (Duchenne muscular
        dystrophy (DMD), spinal muscular atrophy (SMA), Becker Muscular Dystrophy (BMD), Down
        Syndrome will be included.Also mothers of 20 healthy children will be included.
      
Keywords: Physical Disabilities; Anxiety Level; Health Related Quality of Life; Parents'; cerebral palsy