The Caregiver's Burden in Cerebral Palsy
Condition: Cerebral Palsy
MeSH terms: Cerebral Palsy; Caregiver Burden
Study type: Observational

Summary: 
      Cerebral palsy (CP) results from damage to the developing brain of the fetus or infant. These
      non-progressive lesions cause a set of permanent movement and posture disorders, responsible
      for activity limitations. These disorders are often accompanied by sensory, perceptual,
      cognitive impairments, communication and behavioral disorders, and sometimes epilepsy and/or
      secondary musculoskeletal problems. It is the leading cause of motor disability in childhood
      and affects 200 newborns per year in Belgium.

      Cerebral palsy affects two to three people in every 1,000 of the world's population. The
      prevalence, incidence and most common causes have varied over time due to significant changes
      in obstetric care and pediatric care. In 75% of all cases of cerebral palsy, the lesions
      occurred before childbirth.

      The population of adults diagnosed with cerebral palsy is increasing as the survival rate of
      children born with a disability increases. This population requires adapted and expert care
      services for the continuous monitoring and management of their condition. In addition, the
      development of additional health problems in adulthood increases the need for permanent
      access to care structures. Adults with CP have a higher rate of chronic health problems
      (ischemic heart disease) and a deterioration in their functional status. They would also have
      difficulty having a social and professional life which negatively impacts their quality of
      life.

      A large number of adults with CP cannot access appropriate care or medico-social structures.
      This results in a significant involvement of caregivers (family environment or close
      entourage).

      The role of caregiver is at the origin of a significant physical and psychological burden,
      whether for underage patients or adult patients. The study of this burden is well known in
      certain neurological pathologies (head trauma, multiple sclerosis, brain tumors). In the
      field of cerebral palsy, a study showed that the primary caregivers of children with CP had
      higher levels of psychological and physical disorders than the control group studied
      (caregivers of healthy children).

      Currently, there are very few studies assessing the burden of caregivers of adults with
      cerebral palsy. The objective of this study is to analyze, through various specific
      questionnaires, the quality of life and the presence of depressive symptoms linked to the
      burden of caregivers of adults and children with cerebral palsy, taking into account
      socio-economic and environmental data.
    


Intervention name(s): Questionnaire
Intervention type(s): Other
Intervention description(s): Questionnaires in French on the quality of life, the burden of caregiving and a screening for depressive symptoms, completed during specific interviews.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Healthy subjects, aged 18 to 75, caring for relatives of adults and children with cerebral
        palsy, with a good understanding of the French language.