Clinical Trial Details
— Status: Recruiting
Administrative data
| NCT number |
NCT05871931 |
| Other study ID # |
MERSINU-ZYD-01 |
| Secondary ID |
|
| Status |
Recruiting |
| Phase |
N/A
|
| First received |
|
| Last updated |
|
| Start date |
May 5, 2023 |
| Est. completion date |
June 2024 |
Study information
| Verified date |
October 2023 |
| Source |
Mersin University |
| Contact |
Zahide Gül YAZGI DEMIR, Master |
| Phone |
+90 507 373 50 55 |
| Email |
zhde.yzgi[@]gmail.com |
| Is FDA regulated |
No |
| Health authority |
|
| Study type |
Interventional
|
Clinical Trial Summary
The goal of this clinical trial is to examine the effect of Tidal Model-based psychiatric
nursing approach on internalized stigma and psychological well-being in mothers of children
diagnosed with ASD. The main question[s] it aims to answer are:
[Is the Tidal Model-based psychiatric nursing approach effective on the internalized stigma
of mothers with children diagnosed with ASD?] [Is the Tidal Model-based psychiatric nursing
approach effective on the psychological well-being of mothers with children diagnosed with
ASD?]
Data will be collected through scale forms and face-to-face individual interviews. Within the
scope of the pre-test application, data will be collected from all mothers in the sample
group using the "Personal Information Form", "Parents' Internalized Stigma in Mental Illness
Scale" and "Psychological Well-Being Scale". Face-to-face individual interviews will be
conducted with each individual in the intervention group in line with the Tidal Model-based
psychiatric nursing approach.
The researchers will compare the experimental group and the control group to see whether the
Tidal Model-based psychiatric nursing approach applied to mothers with children diagnosed
with ASD has an effect on internalized stigma and psychological well-being.
Description:
Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder characterized by
obsessive and repetitive behavior patterns and inadequacies in social interaction and
communication, with symptoms usually appearing before the age of three in early development.
It has been reported that the global prevalence of ASD has increased in recent years, and an
estimated one in 100 children worldwide is diagnosed with ASD. After the diagnosis of autism,
parents experience a difficult and stressful process and face various problems. In the
current literature, parents of children diagnosed with ASD experience higher levels of
stress, depression and anxiety compared to parents of children with normal development, and
have lower levels of family adjustment, marital satisfaction and psychological well-being,
they are more likely to divorce and have a lower quality of life. In addition, studies have
shown that the parents of children diagnosed with ASD have financial difficulties, they feel
feelings such as helplessness, inadequacy, and rejection, they are worried about their
children's future and safety, and they are in terms of physical injuries during anger
tantrums. It is reported that they are at risk and have difficulties in accessing services
for their children.
Another important difficulty experienced by parents is that they have to isolate themselves
from society due to negative reactions from the environment regarding social acceptance and
social support. Studies have shown that parents of children with autism are exposed to
stigma. Parents state that they are held responsible for their children's situation and
behaviors, they are judged and criticized for thinking that they are inadequate in
controlling and disciplining their children, and therefore they feel shame, and they are
exposed to reactive-harassing words and gazes in public spaces. In parallel, parents state
that socialization is difficult due to their children's compulsive behaviors and difficulties
in social interactions and emphasize that they experience social isolation. As a matter of
fact, in a study, mothers who have children with ASD state that most people condemn the
child's behavior and attribute the reason for these behaviors to parents being bad parents,
and therefore they do not go out of the house with their children and they feel socially
isolated. In addition, it has been reported that stigma has negative effects on parents'
mental health and care experience, and social stigma is associated with depression, anxiety,
and caregiving burden.
Parents of children diagnosed with ASD as a result of social stigma may be affected by
stigmatizing thoughts and attitudes towards them and internalize this stigmatization.
Internalized stigma can be defined as the adoption of the stigmatizing views and attitudes of
the society by the individual. Internalization of stigma; It causes a decrease in
self-esteem, deterioration in social cohesion, the formation of feelings of inadequacy, guilt
and shame, and self-isolation and avoidance behavior. In the literature, it is stated that
internalized stigmatization is common in caregivers of children diagnosed with ASD. In a
study conducted with 230 parents with children with autism, it was reported that 192 (83.5%)
of the parents internalized stigma. In another study conducted with mothers of children
diagnosed with ASD, the level of internalized stigma of mothers was found to be moderate. In
addition, studies conducted with parents of children with autism indicate that internalized
stigma has negative effects on the psychological health of parents. In a study conducted by
Öz et al. (2020) with mothers of children diagnosed with ASD, a positive relationship was
found between the perception of internalized stigma and symptoms of depression and anxiety,
and it was determined that quality of life decreased as the perception of internalization
increased. Wong et al. (2016) found a positive relationship between internalized stigma and
psychological distress in their study with parents of children diagnosed with ASD. In another
study conducted with caregivers of children with ASD, intellectual disability and physical
disability, higher levels of internalized stigma were associated with lower subjective
well-being in caregivers of children with ASD when compared to caregivers of children with
mental and physical disabilities. has been demonstrated. In addition, another study reported
that internalized stigmatization negatively affects psychological well-being of parents.
As can be seen, taking care of a child with a neurodevelopmental disorder such as ASD can be
a burden for parents and parents may have to face many difficulties while managing the care
process. The psychological difficulties experienced can negatively affect the psychological
well-being of parents. Psychological well-being is expressed as the pursuit of meaningful
goals, the development and maintenance of positive relationships with others,
self-realization, personal development and efforts to find meaning in life when faced with
existential difficulties. The psychological well-being of the parents of children with autism
is effective in reducing the burden of care, increasing the skills of caregivers, improving
the quality of life, developing healthy coping methods, maintaining a functional family
structure and optimizing the care of the child. Therefore, considering the impact of parental
mental health on the care and family functioning of the child with autism, it becomes
extremely important to empower parents, protect and improve mental health.
As a result, it is essential that mental health professionals provide holistic and
comprehensive care to the parents of the child diagnosed with ASD in a multidisciplinary
approach, support them in coping with the problems they experience, and engage in activities
to maintain a functional family structure. When the literature is examined, it is seen that
the primary caregivers of children with ASD are mostly mothers, mothers are more interested
in the care of their children and spend time compared to fathers . Studies have also shown
that mothers of children with ASD experience higher levels of parenting stress, psychological
distress, depression and anxiety, and have a lower quality of life compared to fathers. In
this context, considering the possibility of mothers to be affected more psychologically and
the traditional family structure in Turkey, psychiatric nurses, who are an important member
of the mental health team, intervene to strengthen the mothers of children with ASD and to
maintain their psychological well-being, both in individual and community mental health. of
importance to. Considering the possible negative effects of internalized stigma on maternal
mental health and the negative consequences of psychosocial problems on psychological
well-being, it is extremely important that psychiatric nurses engage in intervention studies
that address internalized stigma and psychological well-being. When the literature is
examined, no intervention study has been found that examines two cases based on the nursing
model for mothers of children diagnosed with ASD. For this reason, in this study, a
psychiatric nursing approach based on the Tidal Model, which accepts that each individual is
a unique individual, offers individual care and is a recovery-oriented approach will be
applied. In the model, life is likened to a journey and it is stated that the individual may
encounter various crises in this life journey, and the focus of care is to provide the
support that the individual will need to help them continue their life journey in the fight
against these crises. In addition, the concept of empowerment is at the center of the care
process in the model, emphasizing the importance of the individual discovering his/her
personal story, solving problems, revealing and using personal resources. In this context, it
is appropriate to apply the Tidal Model-based psychiatric nursing approach to this sample
group, considering that each mother's experience is unique as each child diagnosed with ASD
is unique, the psychosocial problems experienced by the mothers, and the mothers' need for
psychosocial support, empowerment and protection of mental health. is thought to be. In
addition, internalized stigma negatively affects psychological well-being, while
psychological well-being is a multidimensional concept that includes dimensions such as
personal development, self-acceptance, life purpose, positive relationships with others,
environmental dominance, and autonomy and the Tidal Model supports personal development. It
is predicted that this model-based psychiatric nursing approach will contribute positively to
the improvement of the mental health status of mothers, as it emphasizes the value of making
sense of one's own life story and experiences, and reveals the importance of the individual's
use of existing resources and problem-solving capacity.
