Turkish Version of Caregiver Difficulties Scale: a Study of Reliability and Validity
Condition: Cerebral Palsy; Caregiver Burnout
MeSH terms: Cerebral Palsy; Caregiver Burden
Study type: Observational

Summary: 
      As the life expectancy of individuals with Cerebral Palsy(CP) increases, their families'
      material, spiritual, physical and social difficulties increase, and in time, psychological
      and behavioral barriers occur in family members. While these barriers are increasing in
      developing countries, the whole family may be more vulnerable to the negative consequences of
      caring because of the limited availability of basic facilities for disabled people and the
      lack of temporary care services. The main aim of rehabilitation of individuals with CP is to
      improve their adaptive functions by increasing their postural control, locomotion and
      manipulative skills. Today, family-centered approaches for CP are known to be the most
      successful in terms of rehabilitation. Because the family is known to be of great importance
      in terms of active participation of the child in life. Therefore, while interdisciplinary
      treatments are in progress for the treatment of individuals, the success of rehabilitation is
      provided by interacting with the family, identifying their needs and problems and supporting
      them. There are many questionnaires developed to assess the difficulties experienced by the
      parents of individuals with CP. Of these, surveys adapted to Turkish are less common. The
      direct translation of the questionnaires into other languages does not guarantee its
      validity. If measures are to be used across cultures, it is known that the elements should
      not only be well translated linguistically, but also culturally adapted to maintain the
      content validity of the instrument across different cultures.
    

Detailed description: 
      Cerebral Palsy(CP) is a lifelong disability and 65-90% of these individuals have a normal
      lifespan. A multidisciplinary team approach is needed to evaluate and treat individuals with
      CP. This team varies according to the age, developmental level, severity of functional
      independence and participation in the society. However, according to the needs and dependency
      levels of individuals as well as team members, the family is at the center of the lives of
      these teams and their children. Depending on the limitations of their physical abilities,
      individuals with CP may need help from others in daily living activities (toilet, bath,
      mobilization, eating), although their limitations vary according to their clinical types.
      Therefore, CP can affect the lives of all family members. Today, it is known that especially
      the parents of individuals with CP experience widespread anxiety, financial problems,
      time-related pressures, and social-cultural activities. While some families adapt well,
      others may have difficulty coping and making various adjustments. This results in parents'
      life satisfaction, poor quality and deterioration of personal well-being. As a result of a
      study examining the quality of life; the importance of evaluating caregivers with reduced
      quality of life, potentially having physical, psychological or social problems. One of the
      effective ways of coping with the disabilities of a child with CP is to consider primary
      caregivers, especially mothers. Therefore, assessment of caregivers' responsibilities and
      their impact on health is a fundamental requirement of long-term care programs for children
      with disabilities. Paying special attention to caregivers can be achieved by using specific
      tools that determine their needs and, together with all family members, not only improve the
      quality of life of the child, but also accelerate the treatment of the child (9). It is
      necessary to assess the responsibilities of care in order to provide access to the necessary
      facilities by providing good support to the caregivers. This can only be achieved by having
      an appropriate scale of caregiver responsibilities (9). The use of questionnaires to assess
      caregivers is most common in developed countries. When the literature is examined, the scale
      called 'Caregiver Difficulties Scale (CDS) en which evaluates the responsibilities of the
      caregivers of the individuals with CP and covers the responsibilities in every aspect (10). A
      Turkish validity and reliability study of several questionnaires evaluating children with CP
      was conducted in Turkey (11). However, there is only one scale for Turkish validity and
      reliability studies on parental involvement (11). The aim of this study is to determine
      whether the Caregiver Difficulties Scale (CDS) is a valid and reliable tool by cultural
      adaptation.
    

Intervention name(s): Questionnaire
Intervention type(s): Other
Intervention description(s): Caregiver Difficulties Scale, Impact on Family Scale, WHOQOL-BREF Quality of Life Assessment, Nottingham Health Profile, Fatigue Severity Scale, Beck Depression Scale
Other intervention name(s): assesment
Observational model: Family-Based
Time perspective: Retrospective
Sampling method: Non-Probability Sample
Study population: 
        Parents of individuals with CP patients
      
Keywords: Caregiver Diffuculties Scale; reliability; validity; Turkish version