The Effect of Transition to Adulthood Education Program on Family Quality of Life and Perceived Stress Level

The Effect of Transition to Adulthood Education Program Given to Mothers of Children With Intellectual Disability on Family Quality of Life and Perceived Stress Level

Negative emotions experienced during life processes and the burden of caregiving affect the quality of life of parents. It has been found that parents who care for their children with intellectual disability (ID) for a long time have difficulties in coping with stress and their quality of life is adversely affected. However, families play a key role in maintaining the care of their children with ID, so it is very important that parents are supported in the matters they need.

Study Overview

• Status: Completed
• Conditions: Intellectual Disability
• Intervention / Treatment: Other: Transition to Adulthood Education Program

Detailed Description

Mothers are generally the people who take on a large part of the burden of care for their children with intellectual disability (ID) in the family and are most affected by the negativities brought by the conditions. Providing support to mothers for the care and future planning of their children who have just passed into adult life and for their future planning is important both in terms of maintaining family well-being and creating positive effects in the lives of individuals with mental disabilities.

With this study, it is aimed to increase the quality of life of mothers and to reduce perceived stress levels with the training (YEGEP) modules to be given for the changing care needs of individuals with ID who have reached adulthood or are in transition. In addition, it is expected that the health risks of young adults with ID will be determined at an early stage, and their health will be improved and protected.

• Study Type: Interventional
• Enrollment (Actual): 33
• Phase: Not Applicable

Contacts and Locations

Study Locations

• Turkey
  • Istanbul, Turkey
    • Koc University

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: Yes

Description

Inclusion Criteria:

• Whose child is registered with the disability center,
• Have a young adult child between the ages of 20 and 35 with moderate and severe mental disabilities,
• Speaking Turkish and literate Turkish,
• Not visually and speech impaired,
• Mothers who volunteered to participate in the study will be included.

Exclusion Criteria:

• Mothers who did not volunteer to participate in the study and were illiterate in Turkish were not included in the study.

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: Single

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Experimental: YEGEP group/Intervention; Mothers will be informed about the program and invited to work. In the phone call, information will be given about the purpose, duration, requirements and volunteering of the study. The planned training schedule will be applied to these mothers.	Other: Transition to Adulthood Education Program; YEGEP was developed by the authors based on the information in the literature, based on the needs of mothers of children who have reached adulthood or are going through. Three training modules are planned in line with current requirements. Education will also be supported by audio-visual and written materials. It is planned that the trainings, which will last for 3 weeks in total, for 1 hour a week for each group, in the form of 3 sessions of 1 hour with these contents, will be held at a disabled center. Titles of training modules: Developmental Period Characteristics of Young Adults with Intellectual Disabilities (Transition to Adulthood, Future Planning / Social Life (employment, peers, etc.); Protecting and Sustaining the Health of Young Adult with Intellectual Disabilities; Coping with Stress; Other Names: There is no other intervention
No Intervention: Control group; Annual care trainings are given to parents at the disabled center where the study will be conducted. There is no similar practice to these mothers on the same dates. place in the control group

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Personal Information Form	The personal information form consists of various socio-demographic questions about the participant and the mentally handicapped child, such as gender, age and educational status.	All mothers will be asked to fill in 1 hour before the training.
Beach Center Family Quality of Life (BCFQOL) Scale	The scale, developed by University of Kansas Beach Center on Family and Disability (2006) (Beach Center on Disability at the University of Kansas in partnership with families, 2006) and adapted into Turkish by Meral et al. (2012), consists of 25 questions, five sub-dimensions and 5 It is a data collection tool consisting of likert-type responses. The scale aims to determine the quality of life of families with children with special needs.	Immediately after the training is completed (average of 5 minutes), mothers will be asked to complete this scale.
Beach Center Family Quality of Life (BCFQOL) Scale	The scale, developed by University of Kansas Beach Center on Family and Disability (2006) (Beach Center on Disability at the University of Kansas in partnership with families, 2006) and adapted into Turkish by Meral et al. (2012), consists of 25 questions, five sub-dimensions and 5 It is a data collection tool consisting of likert-type responses. The scale aims to determine the quality of life of families with children with special needs.	One month after the training is completed, mothers will be asked to complete this scale to evaluate the effectiveness of the training.
Perceived Stress Scale	The scale developed by Cohen, Kamarck, and Mermelstein (1983) to measure how individuals evaluate stressful life events as unpredictable, uncontrollable and difficult to cope with in the last month consists of 10 items.	Immediately after the training is completed (average of 5 minutes), mothers will be asked to complete this scale.
Perceived Stress Scale	The scale developed by Cohen, Kamarck, and Mermelstein (1983) to measure how individuals evaluate stressful life events as unpredictable, uncontrollable and difficult to cope with in the last month consists of 10 items.	Immediately afteImmediately after the training is completed (average of 5 minutes), mothers will be asked to complete this scale.r the training is completed (average of 5 minutes), mothers will be asked to complete this scale.

Collaborators and Investigators

• Sponsor: Koç University

Study record dates

Study Major Dates

• Study Start (Actual): January 1, 2023
• Primary Completion (Actual): August 1, 2023
• Study Completion (Actual): September 1, 2023

Study Registration Dates

• First Submitted: October 17, 2022
• First Submitted That Met QC Criteria: October 17, 2022
• First Posted (Actual): October 20, 2022

Study Record Updates

• Last Update Posted (Estimated): January 11, 2024
• Last Update Submitted That Met QC Criteria: January 10, 2024
• Last Verified: January 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Nervous System Diseases; Neurologic Manifestations; Neurobehavioral Manifestations; Neurodevelopmental Disorders; Intellectual Disability
• Other Study ID Numbers: Eyşan Umac

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No