Clinical trial NCT05422261: The Relationship Between Parents' Fatigue and Quality of Life
Official title: The Relationship Between Parents' Fatigue and Quality of Life, and the Quality of Life and Participation of Children With Autism Spectrum Disorder
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Autism Spectrum Disorder
Keywords: Autism Spectrum Disorder
Quality of life
Participation
Depression
Lead sponsor: Akdeniz University
Sponsor class: OTHER
First posted: 2022-06-16
Enrollment: 103
Sex: ALL
Minimum age (years): 2
Maximum age (years): 17
Standard ages: CHILD
Accepts healthy volunteers: yes
Observational model: CASE_CONTROL
Time perspective: CROSS_SECTIONAL
Sampling method: PROBABILITY_SAMPLE
Study population: Children with diagnosed Autism Spectrum Disorder and their health peers and their families

Brief summary: 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.

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.

Eligibility criteria: 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.

Primary outcomes:
measure: Evaluation of fatigue
timeFrame: baseline
measure: Evaluation of fatigue severity
timeFrame: Baseline
measure: Evaluation of Quality of Life of children
timeFrame: Baseline
Secondary outcomes:
measure: Evaluation of health
timeFrame: Baseline
measure: Evaluation of depression
timeFrame: Baseline
measure: Evaluation of participation
timeFrame: Baseline
Other outcomes:
Locations:
city: Antalya
country: Turkey
facility: Akdeniz University
Study officials:
References:
citation: Battle DE. Diagnostic and Statistical Manual of Mental Disorders (DSM). Codas. 2013;25(2):191-2. doi: 10.1590/s2317-17822013000200017. No abstract available.
citation: Lecavalier L, Leone S, Wiltz J. The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. J Intellect Disabil Res. 2006 Mar;50(Pt 3):172-83. doi: 10.1111/j.1365-2788.2005.00732.x.
citation: Cohrs AC, Leslie DL. Depression in Parents of Children Diagnosed with Autism Spectrum Disorder: A Claims-Based Analysis. J Autism Dev Disord. 2017 May;47(5):1416-1422. doi: 10.1007/s10803-017-3063-y.
citation: Hayes SA, Watson SL. The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013 Mar;43(3):629-42. doi: 10.1007/s10803-012-1604-y.
citation: Higgins DJ, Bailey SR, Pearce JC. Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism. 2005 May;9(2):125-37. doi: 10.1177/1362361305051403.
citation: Giallo R, Wood CE, Jellett R, Porter R. Fatigue, wellbeing and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism. 2013 Jul;17(4):465-80. doi: 10.1177/1362361311416830. Epub 2011 Jul 25.
citation: Seymour M, Wood C, Giallo R, Jellett R. Fatigue, stress and coping in mothers of children with an autism spectrum disorder. J Autism Dev Disord. 2013 Jul;43(7):1547-54. doi: 10.1007/s10803-012-1701-y.
citation: King G, Law M, King S, Rosenbaum P, Kertoy MK, Young NL. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr. 2003;23(1):63-90.
citation: Simpson K, Adams D, Bruck S, Keen D. Investigating the participation of children on the autism spectrum across home, school, and community: A longitudinal study. Child Care Health Dev. 2019 Sep;45(5):681-687. doi: 10.1111/cch.12679. Epub 2019 May 20.
citation: Egilson ST, Jakobsdottir G, Olafsdottir LB. Parent perspectives on home participation of high-functioning children with autism spectrum disorder compared with a matched group of children without autism spectrum disorder. Autism. 2018 Jul;22(5):560-570. doi: 10.1177/1362361316685555. Epub 2017 Apr 21.
citation: Taheri A, Perry A, Minnes P. Examining the social participation of children and adolescents with Intellectual Disabilities and Autism Spectrum Disorder in relation to peers. J Intellect Disabil Res. 2016 May;60(5):435-43. doi: 10.1111/jir.12289.