Clinical Trial Details
— Status: Completed
Administrative data
NCT number |
NCT04037137 |
Other study ID # |
Sanko M |
Secondary ID |
|
Status |
Completed |
Phase |
|
First received |
|
Last updated |
|
Start date |
August 1, 2019 |
Est. completion date |
March 26, 2021 |
Study information
Verified date |
April 2021 |
Source |
Sanko University |
Contact |
n/a |
Is FDA regulated |
No |
Health authority |
|
Study type |
Observational
|
Clinical Trial 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.
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.