The Relationship Between Parents' Fatigue and Quality of Life

May 31, 2023 updated by: Ozgun Kaya Kara, Akdeniz University

The Relationship Between Parents' Fatigue and Quality of Life, and the Quality of Life and Participation of Children With Autism Spectrum Disorder

By comparing them to a healthy control group, this study aims to investigate the relationship between the participation of children with autism spectrum disorder (ASD) in home, school, and community environments and their parents' fatigue, depression, and quality of life, as well as the child's quality of life. There is no study that investigators are aware of that looks into the relationship between the fatigue and quality of life of parents of children with ASD and the quality of life and participation of children with ASD. This study hypothesizes that parents of children with ASD experience more fatigue and have a lower health-related quality of life than parents of healthy children.

Study Overview

Status

Completed

Conditions

Detailed Description

ASD is a neurodevelopmental disorder characterized by difficulties with social communication, limited and repetitive activities, and sensory sensitivity. The social, emotional, and behavioral issues that children with ASD face are a source of concern for their parents. Mental health issues such as stress, depression, and anxiety are common in these households. According to studies, mothers of children with ASD experience more stress and depression than mothers of children without ASD or mothers of children with other chronic disorders. Another aspect of having an ASD child that has an influence on health is fatigue. In terms of the health of parents of children with ASD, fatigue is often overlooked in study and practice. One of the study was investigated at the fatigue levels of 50 mothers of children with ASD who were between the ages of 2 and 5. Compared to mothers of healthy children, mothers of children with ASD reported higher fatigue, stress, worry, and depressive symptoms.

Participation in daily activities is critical for all children's healthy development, whether or not they have a disability. Participating in activities allows children to express themselves, find purpose, and improve their health. Exclusion and loneliness can arise from a child's inability to participate in normal childhood activities. This circumstance has a number of harmful consequences for the child. According to research, children with ASD participate in their home, school, and community surroundings at a considerably lower rate than their healthy peers, and this difference grows over time.

There is no study in the literature that examines the association between children with ASD's participation in home, school, and community environments, their parents' fatigue level, and the child's quality of life. As a result, the purpose of this research is to look at the relationship between ASD children's participation in home, school, and community settings and their parents' fatigue, depression, and quality of life, as well as the child's quality of life, by comparing them to a healthy control group.

Study Type

Observational

Enrollment (Actual)

103

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Turkey
      • Antalya, Turkey
        • Akdeniz University

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

2 years to 17 years (Child)

Accepts Healthy Volunteers

Yes

Sampling Method

Probability Sample

Study Population

Children with diagnosed Autism Spectrum Disorder and their health peers and their families

Description

Inclusion Criteria:

  • Diagnosis of Autism Spectrum Disorder and their parents
  • Aged at 2-17 years.
  • To be the native language Turkish

Exclusion Criteria:

  • Diagnosis of other neurologic disorder such as epilepsy, diabetes, congenital heart disease, brain trauma
  • Not to accept to attend the study

Inclusion criteria for control group:

  1. Ages at 2-18 years.
  2. Not having any psychiatric or neurological diagnosis.
  3. To be the native language Turkish.

Exclusion criteria for control group:

  1. Not agree to participate the study.
  2. To have received medical treatment for any neuropsychiatric disorder.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Experimental Group
Children with Autism Spectrum Disorder and their parents
Control Group
Health children and their parents

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Evaluation of fatigue
Time Frame: baseline
Fatigue Impact Scale is a multidimensional scale that measures the physical, cognitive, and social effects of fatigue. It consists of 40 items divided into 10 cognitive, 10 physical, and 20 social subscales. Each question is scored on a five-point Likert scale from 0 (no problem) to 4 (extreme problem). The maximum score is 160.
baseline
Evaluation of fatigue severity
Time Frame: Baseline
The Fatigue Severity Scale is one of the most commonly used scales to assess fatigue. There are nine questions. Each question is scored on a seven-point Likert scale from one to seven. The mean of nine questions is the scale value.The minimum score is 1 and maximum score is 7. Higher scores indicate more severe fatigue. Although there is no recommendation, it is usually considered that fatigue severity above 4 points is significant.
Baseline
Evaluation of Quality of Life of children
Time Frame: Baseline
Quality of Life in Autism Questionnaire-Parent Version is divided into 2 parts (A and B). Part A consists of 28 questions that assess parents' perceptions of their own life quality. Each question is scored on a five-point Likert scale from one (not at all) to five (very much). Part B assesses parents' perceptions of the severity of their child's autism-related difficulties with 20 questions. Each question is scored on a five-point Likert scale from one (not much of a problem for me) to five (very much of a problem for me). Higher scores indicate that a child's autism-related difficulties cause fewer problems for parents. The scale produces a score ranging from minimum 48 to maximum 240 score.
Baseline

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Evaluation of health
Time Frame: Baseline
Nottingham Health Profile assesses the physical, emotional, and health problems perceived by a person. It consists of 6 different subcategories such as energy, pain, physical mobility, sleep, emotional reactions, and social isolation, with 38 items. Nottingham Health Profile examines the current state of health, and the answers are binary (yes/no).The overall value is calculated by multiplying the intensity of the questions by the positive answer to each one. Minimum score is 0 and maximum score is 100.
Baseline
Evaluation of depression
Time Frame: Baseline
Beck Depression Inventory assesses characteristic attitudes and depression symptoms with 21 self-reported items. It takes about 10 minutes to finish the assessment. It is intended for people aged 13 and up. Beck Depression Inventory includes 21 questions. For each question, the lowest score is 0 and the maximum score is 3. The total score of all answers is evaluated as follows 0 to 9 points: "minimal depressive symptoms", 10 to 16 points: "mild depressive symptoms", 17 to 29 points: "moderate depressive symptoms", 20 to 63 points: "severe depressive symptoms".
Baseline
Evaluation of participation
Time Frame: Baseline
Participation and Environment- Children and Youth is a parent-reported questionnaire to assess participation and environmental factors in the home, at school, and within community settings. The participation sections included 10 activities in the home setting, five activities in the school setting and 10 in the community setting. For each activity, parents are asked to determine the participation frequency (how frequently has the child participated with eight options: daily to never); participation involvement (how involved the child is while participating in the activity rated on a five-point scale: very involved to minimally involved); and whether change is desired (do the parents want to see change in the child's participation in this type of activity: no or yes, with five different types of change). The minimum score is 0 and the maximum score is 100.
Baseline

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Akdeniz University

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

February 1, 2023

Primary Completion (Actual)

May 16, 2023

Study Completion (Actual)

May 30, 2023

Study Registration Dates

First Submitted

June 14, 2022

First Submitted That Met QC Criteria

June 14, 2022

First Posted (Actual)

June 16, 2022

Study Record Updates

Last Update Posted (Actual)

June 1, 2023

Last Update Submitted That Met QC Criteria

May 31, 2023

Last Verified

May 1, 2023

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 2019/288

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

IPD Plan Description

Results will be presented in the journal

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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