Clinical trial NCT04037137: Turkish Version of Caregiver Difficulties Scale: a Study of Reliability and Validity
Official title: Turkish Version of Caregiver Difficulties Scale: a Study of Reliability and Validity
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Cerebral Palsy
Caregiver Burnout
Keywords: Caregiver Diffuculties Scale
reliability
validity
Turkish version
Lead sponsor: Sanko University
Sponsor class: OTHER
First posted: 2019-07-30
Enrollment: 80
Sex: ALL
Minimum age (years): 24
Maximum age (years): 70
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: FAMILY_BASED
Time perspective: RETROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Parents of individuals with CP patients

Brief 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.

Eligibility criteria: Inclusion Criteria:

* Parents of individuals with CP receiving active treatment in a Special Education and Rehabilitation Center reported from Guidance and Research Centers after being diagnosed from all 2 nd and 3 rd health institutions in Gaziantep
* be willing to participate in the study

Exclusion Criteria:

* Having any diagnosed psychological disorder

Primary outcomes:
measure: Change of Caregiver Diffuculties Scale (CDS)
timeFrame: first day and 2 weeks later
measure: Impact on family scale
timeFrame: First day
Secondary outcomes:
measure: Nottingham Health Profile
timeFrame: first day
measure: Fatigue Severity Scale
timeFrame: first day
measure: Beck Depression Scale
timeFrame: first day
measure: WHOQOL-BREF quality of life assessment
timeFrame: first day
Other outcomes:
Locations:
city: Gaziantep
country: Turkey
facility: Sanko University
state: Şehitkamil
Study officials:
affiliation: Sanko University
name: Hatice Adıgüzel, PhD cd.
role: PRINCIPAL_INVESTIGATOR
affiliation: Sanko University
name: İpek Katırcı Kirmaci, PhD cd.
role: PRINCIPAL_INVESTIGATOR
affiliation: Sanko University
name: Nevin Ergun, Prof.
role: PRINCIPAL_INVESTIGATOR
affiliation: Pamukkale University
name: Suat Erel, Prof.
role: PRINCIPAL_INVESTIGATOR
References: