Investigation of Parents' Anxiety Level and Health Related Quality of Life in Different Types of Physical Disabilities

NCT ID: NCT04035967

Last Updated: 2019-07-29

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 91 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2017-05-01
• Study Completion Date: 2019-05-01

Brief Summary

Disability brings many psychosocial problems in society. The effects of the health of a disabled child on the psychological health and quality of life of the family are inevitable. It has been shown that families with disabled children are exposed to chronic stress, have communication problems and social isolation between parents, and have to spend extra time for the care of children. It is reported in the literature that parents with mentally or physically handicapped children are more stressed and have higher levels of anxiety than parents without children with disabilities. Since activity limitations, participation restrictions, and social and physical barriers are different in each disability group, caregivers may be affected differently. Comparing the quality of life of caregivers of different disability groups and guiding the family in line with the results obtained is important for public health.As the time spent on care may vary in different types of disability, families' levels of distress and anxiety may also be different.There are no studies in the literature comparing the anxiety level of the parents of the individuals with Muscular Dystrophy (MD), Spina Bifida (SB), Cerebral Palsy (SP) and Down Syndrome (DS), which have a very important place in the permanent disability groups, by evaluating the family effect levels and health-related quality of life. . For this reason, this study was planned to investigate the quality of life, anxiety, level of disease and social effects of mothers with different physical disabilities.

Detailed Description

Disability is a life-long condition that involves different care needs and includes many psychosocial problems. Having a disabled child is for all family members; creates stress. In the studies, it was found that mothers with disabled children were more stressed and their anxiety levels were higher. There are many disabled people in Turkey and researches related to the caregiver, although there is not enough research on these people. Since activity limitations, participation restrictions and social and physical barriers are different in each disability group, caregivers' influences may also be different. Comparing the quality of life of caregivers of different disability groups and guiding the family in line with the results obtained is important for public health. It is known that the mothers of children with physical disabilities have more symptoms of depression depending on the functional levels of the children. The severity of depression was also found to be higher in people with physical disabilities than other disability groups. In addition, it has been shown that there is a positive relationship between the time spent on care of the child and the level of strain of caregivers. As the time spent on care may vary in different types of disability, families' levels of distress and anxiety may also be different. This is the rehabilitation services; In addition to the physiotherapy applied to physically disabled individuals, it is thought that the social needs of caregivers should be determined and met.In the literature, there are no studies comparing the effects of disease, anxiety levels and quality of life of parents with Muscular Dystrophy (MD), Spina Bifida (SB), Cerebral Palsy (SP) and Down Syndrome (DS). This study was planned to investigate the quality of life, anxiety level, family effects and social effects of the mothers with different physical disabilities.

Conditions

Cerebral Palsy; Down Syndrome; Spina Bifida; Muscular Dystrophy; Parents

Study Design

• Observational Model Type: FAMILY_BASED
• Study Time Perspective: RETROSPECTIVE

Interventions

Questionnaire

Impact on Family Scale (IPFAM), WeeFIM Pediatric Functional Independence Measurement, Nottingham Health Profile. State-Trait Anxiety Inven¬tory (STAI-I and STAI-II), PEDI (Pediatric Evaulation of Disability Inventory)

Intervention Type: OTHER

Other Intervention Names

assesment

Eligibility Criteria

Inclusion Criteria

• Literate mothers with physical disabilities or healthy children between the ages of 4 and 16, without any known functional and psychological problems
• Literate mothers aged 4-16 years with healthy children, without any known functional and psychological problems
• Signed informed consent form

Exclusion Criteria

• Mothers of 20 healthy children will be included. with the children who have multiple disabilities
• Mothers of 20 healthy children will be included. with the children who have severe / moderate mental impairment
• Mothers of 20 healthy children will be included. with the children who have Down's syndrome or autism

• Minimum Eligible Age: 24 Years
• Maximum Eligible Age: 70 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Sanko University

OTHER

Sponsor Role: lead

Responsible Party

Hatice Adıgüzel

Principal Investigator

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Hatice Adıgüzel

Role: PRINCIPAL_INVESTIGATOR

Sanko University

Bülent Elbasan, Ass. Prof.

Role: PRINCIPAL_INVESTIGATOR

Gazi University

Nevin Ergun, Prof.

Role: PRINCIPAL_INVESTIGATOR

Sanko University

Locations

Sanko University

Gaziantep, Şehitkamil, Turkey (Türkiye)

Countries

Turkey (Türkiye)

Other Identifiers

SankoUni

Identifier Type: -

Identifier Source: org_study_id