Turkish Version of Caregiver Difficulties Scale: a Study of Reliability and Validity

NCT04037137 | Completed

• 1 other identifier: Sanko M
• Study Type: observational
• Target: 80
• Locations: 1 country
• Sites: 1

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.

Conditions

Cerebral Palsy; Caregiver Burnout

Keywords

Caregiver Diffuculties Scale; reliability; validity; Turkish version

Outcome Measures

Primary Outcomes (2)

• Change of Caregiver Diffuculties Scale (CDS)

  CDS is a self-administered questionnaire designed to be completed by the principal caregiver of the child with Cerebral palsy.The 4 subscales of CDS and the corresponding items are as follows.Concerns for the child, Impact on self, Support for caregiving, Support for caregiving.There is no definite cut off threshold for CDS; the total CDS score can be used to get an idea about the level of burden experienced by the caregivers, a higher score indicating a higher level of burden.CDS shows that a high CDS score (above 42) is predictive of caregiver psychological problems. Therefore, CDS is also useful as a potential screening tool for identification of caregivers who are at risk of psychological problems such as stress, depression and anxiety.After the second application,the consistency and problems of the CDS questionnaire were reviewed.

  first day and 2 weeks later

• Impact on family scale

  The original objective of the Impact on Family Scale is to assess the effect of a child's illness or health condition on the family. All items had astandard four-point scale ranging from strongly agree to strongly disagree.The four factors measured General Negative Impact (11 items), Disruption of Social Relations (nine items), Coping (four items), and Financial Impact (three items).Items are scored on a Likert scale.A low score indicates a higher impact of the chronic disease on the parents. Scores are calculated as percentages according to the highest scores of each part, using inverse proportion computing.

  First day

Secondary Outcomes (4)

• Nottingham Health Profile

  first day

• Fatigue Severity Scale

  first day

• Beck Depression Scale

  first day

• WHOQOL-BREF quality of life assessment

  first day

Interventions

Questionnaire OTHER

Caregiver Difficulties Scale, Impact on Family Scale, WHOQOL-BREF Quality of Life Assessment, Nottingham Health Profile, Fatigue Severity Scale, Beck Depression Scale

Also known as: assesment

Eligibility Criteria

• Age: 24 Years - 70 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Parents of individuals with CP patients

You may qualify if:

• 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

You may not qualify if:

• Having any diagnosed psychological disorder

Sponsors & Collaborators

• Sanko University: lead

Study Sites (1)

Sanko University

Gaziantep, Şehitkamil, 27090, Turkey (Türkiye)

Location

MeSH Terms

Conditions

Cerebral Palsy; Caregiver Burden

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Brain Damage, Chronic; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Stress, Psychological; Behavioral Symptoms; Behavior

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Hatice Adıgüzel, PhD cd.

  Sanko University

  PRINCIPAL INVESTIGATOR

• İpek Katırcı Kirmaci, PhD cd.

  Sanko University

  PRINCIPAL INVESTIGATOR

• Nevin Ergun, Prof.

  Sanko University

  PRINCIPAL INVESTIGATOR

• Suat Erel, Prof.

  Pamukkale University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Msc PhD. cd. Lecturer

Study Record Dates

• First Submitted: July 23, 2019
• First Posted: July 30, 2019
• Study Start: August 1, 2019
• Primary Completion: March 26, 2021
• Study Completion: March 26, 2021
• Last Updated: April 13, 2021

Record last verified: 2021-04

Locations

TU (1)