Clinical Trial Details
— Status: Completed
Administrative data
NCT number |
NCT05693662 |
Other study ID # |
MCENGIZ |
Secondary ID |
|
Status |
Completed |
Phase |
N/A
|
First received |
|
Last updated |
|
Start date |
February 1, 2023 |
Est. completion date |
March 5, 2024 |
Study information
Verified date |
June 2024 |
Source |
Ataturk University |
Contact |
n/a |
Is FDA regulated |
No |
Health authority |
|
Study type |
Interventional
|
Clinical Trial Summary
Autistic Spectrum Disorder (ASD) is an important public health problem in our country as well
as all over the world. The physical, psychological, social and economic problems and mood
disorders experienced by the parents of these children can negatively affect not only
themselves, but also the effectiveness of the intervention and treatment programs applied to
the children. Therefore, many mindfulness-based intervention programs aim to improve stress
reduction, resilience and well-being in parents.
In this study, it is aimed to evaluate the effect of mindfulness-based self-compassion
training given to parents of children with ASD on stress, resilience and well-being. The
research will be carried out with the parents of children aged 7-12 years who applied to the
Child and Adolescent Psychiatry Outpatient Clinic of Atatürk University Health Research and
Application Center located in Erzurum city center between December 2022 and October 2024 and
diagnosed with ASD. The sample of the study was determined by G-power analysis. With the
power analysis, it was calculated that at least 68 parents should be included in the sample,
in the calculation made at the level of α=0.05, the effect size of 150, 153 (d=0.8) and the
power of the study to be 90%. Therefore, the sample size of this study is planned to be 68.
In the collection of research data, an introductory information form containing the
socio-demographic data of the child with ASD and the parent, prepared by the researcher in
line with the literature, Parental Stress Scale (SIDS), Psychological Resilience Scale for
Adults, Warwick-Edinburgh Mental Well-Being Scale, Self-Compassion Scale Short Form (SSS-F),
Conscious Awareness Scale (CIFI) will be used.
Description:
Autism spectrum disorder (ASD) is a developmental disability that can cause a wide variety of
difficulties in social interaction, communication, and behavior. ASD is defined in the 5th
Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as the presence
of limited and repetitive behaviors, interests, or activity patterns with the emergence of
permanent impairments in social interaction (American Psychiatric Association, 2013). Autism
spectrum disorder (ASD) is a lifelong pervasive neurodevelopmental disorder reported to occur
in 1 (approximately 2.3%) of 44 8-year-old children in the United States (Alyami et al.,
2022; CDC, 2022; Vasilopoulou). and Nisbet, 2016).
Symptoms of ASD vary greatly depending on the child's developmental level and chronological
age, and may include a number of behavioral symptoms such as hyperactivity, impulsivity,
aggression, self-harming behavior, tantrums, and delayed toilet training (Neff & Faso, 2015;
Duarte et al. ., 2005). Supporting children with ASD is often complex, requiring
multidisciplinary teamwork and continuity of care (Kohane et al. 2012; Lee et al. 2015).
Parents of children with ASD must manage many aspects of caregiving that can be challenging
and overwhelming (Bekhet et al., 2012). It has been reported that parents of autistic
children experience lower quality of life, more depression, and more pessimism about the
future than parents of children with normal development and parents of children with other
developmental disabilities (Cappe et al., 2011; Johnson et al., 2011). The number of
published studies on the impact of ASD on parents has increased over the past two decades. In
a meta-analysis study, it was found that parents of autistic children have higher levels of
parenting stress than parents of normally developing children or parents of children with
other disabilities (for example, Down syndrome, cerebral palsy, intellectual disability)
(Hayes & Watson, 2008). 2013). Severe behavioral symptoms in a child with ASD have been
associated with parenting stress, increased depression and anxiety symptoms (Cachia et al.,
2016; Junior et al., 2016), and general psychological distress (Keenan et al., 2016). Stigma
in social interaction affects well-being and stress in parents caring for a child with ASD
(Chan & Lam, 2017; Kinnear et al., 2016; Mak & Kwok, 2010). In addition, it was stated that
the well-being of parents was positively affected by social support (Werner & Shulman, 2013).
The severity of a child's autism symptoms and behaviors has consistently been found to be one
of the strongest predictors of parental stress (Davis & Carter, 2008; Ingersoll & Hambrick,
2011; Lyons et al., 2010; Hall & Graff, 2012). Children with ASD usually develop anger,
aggression, self-harm, tantrums, and repetitive behaviors that are described by parents as
destructive, unpredictable, and difficult to manage (Ludlow et al. 2011). Since parents
cannot "control" their children due to these situations, they are thought to be misbehaving
by strangers and may receive condemnation and disapproval. Parents experience shame due to
this situation (Mak & Kwok, 2010; Neff & Faso, 2015).
In a study, it was determined that parenting stress levels should be considered when
designing early education interventions for children with ASD. Helping parents of children
with ASD reduce their stress levels enables the child to achieve greater gains in
time-intensive early education intervention programs (Osborne et al., 2008). Unless parents
successfully cope with important stressors and effectively manage mental health problems, the
expected effect of behavioral therapies for their children may be low (Osborne et al., 2008),
and behavioral problems may increase in children due to parental stress (Lecavalier et al. et
al., 2006 ; McGrath, 2013 ; Neece et al., 2012). Self-compassion, which includes being kind
to oneself in difficult times, recognizing the common nature of human suffering, and being
consciously aware of negative thoughts and emotions, is cited as one of the factors that can
be an important coping strategy. Self-compassion includes being open and sensitive to one's
emotions in the face of one's own negative experiences, a willingness to reduce the pain
arising from these experiences, and approaching oneself with compassion. Self-compassion has
three different components: self-compassion, shared experience of humanity, and conscious
awareness (Neff, 2003). The "self-compassion" dimension of self-compassion shows the
potential of a person to approach one's negative feelings, thoughts, actions or impulses in a
forgiving, empathetic, sensitive and patient manner (Gilbert & Irons, 2005).The "common
experience of humanity" dimension of self-compassion requires knowing that being human brings
with it limited power and that everyone can have flaws and deficiencies. The third dimension
of self-compassion, "conscious awareness", includes being able to pay attention to the very
moment one is in, clearly and consciously, being aware of and accepting whatever is happening
at that moment. Besides being mindful, it is also very important to be able to pay attention
to the present moment with compassionate and friendly attention. Mindfulness includes the
ability to name and observe the emotions and thoughts one has at the moment, rather than
reacting impulsively. In order for an individual to show self-compassion, he must first be
aware of his pain (Neff & Tirch, 2013). Awareness requires acknowledging the reality of
experiences rather than escaping painful feelings. Therefore, mindfulness is an inevitable
component of self-compassion and helps with emotion regulation. Emotion regulation; Being
aware of the emotion, intensity and duration of feeling the emotion in the face of negative
life experiences (Thompson, 1994). In other words, conscious awareness; It is to be able to
provide balanced control of emotions without allowing the individual to accept his painful
feelings, but without allowing these feelings to create anxiety in him (Neff, 2003).
In a study conducted with parents of children with ASD, it has been shown that parental
stress and well-being are affected by self-compassion (Neff & Faso, 2015; Wong et al., 2016).
In a recent study on Mindfulness-Based Stress Reduction (MBSR) and Self-Compassion (SC)
training for parents of children with ASD, it was reported that the education applied in
parents reduced stress and anxiety and increased their awareness of attention (Rojas-Torres,
2021).
In the literature, international studies on Awareness-Based Self-Compassion training on
stress reduction in parents of children with ASD are limited (Rojas-Torres, 2021).
International studies on increasing resilience and well-being of Mindfulness-Based
Self-Compassion training have not been found. When national surveys were examined, no study
was found on the use of Mindfulness-Based Self-Compassion training to reduce stress, increase
resilience and well-being. Considering the stress situations experienced by the parents of
children with ASD, it is thought that the practice of Awareness-Based Self-Compassion
training, as an evidence-based practice, is important for parents regarding stress,
resilience and well-being.