Determining Dysphagia Awareness in Caregivers

Study Overview
=================
Brief Summary
-----------------
Genetic, neuromuscular, gastrointestinal, cardiorespiratory diseases and congenital abnormalities can cause dysphagia in children (1, 2). Various symptoms such as coughing during or after feeding, vomiting, recurrent lung infections, inability to gaining weight, difficulty in oromotor control, nasal regurgitation, and prolonged feeding time can be seen in children whose growth and development are affected due to dysphagia (3). The primary aim of dysphagia rehabilitation is; gaining a child's age-appropriate nutritional experience by ensuring safe swallowing; supporting growth and development (1). Rehabilitation consists of active or passive oral motor exercises, sensory training, thickened fluids, positioning and their combinations (4, 5). The caregiver is one of the most important partners of the rehabilitation program and should apply feding modifications and positioning for safe swallowing during each feeding. In addition, the exercise approaches recommended by the health personnel should be performed in order to improve the swallowing function at certain times of the day (5). According to a study in patients with neurologenic caregivers' failure to comply with dysphagia strategies; chest infections, aspiration pneumonia, prolongation of hospital stay, and adverse clinical outcomes resulting in death (6). Therefore, the role of caregivers is very important in the perisistence and success of rehabilitation is great. The level of knowledge and awareness of the caregiver directly affects the rehabilitation effectiveness. The knowledge and awareness of the caregiver directly affects the effectiveness of rehabilitation, as it is the caregiver who is most interested and spends time with the child. The caregiver, who has knowledge about dysphagia, symptoms and management, will give the necessary importance to rehabilitation and will be more aware of the child's existing condition. Thus, communication with health personnel will be strengthened, effectiveness of rehabilitation will increase. The aim of this study; to determine the level of knowledge of the caregiver about dysphagias and symptoms.

Official Title
-----------------
Determining Pediatric Dysphagia Awareness in Caregivers

Conditions
-----------------
Caregiver Awareness About Dysphagia

Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Persons who provided primary care for children younger than 18 years with dysphagia Exclusion Criteria: Doesn't accept to participate to study

Ages Eligible for Study
-----------------
Minimum Age: 20 Years
Maximum Age: 60 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| caregivers<br>Person who provided primary care for children younger than 18 years with swallowing disorders. | |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Determination of Caregiver Awareness: | In order to determine the awareness of dysphagia in caregivers will be asked 6 questions follows. The caregiver will be rate their own level of knowledge on a scale of 1-10. The physiotherapist who made the evaluation will score the caregiver's knowledge level between 1 and 10 in line with the answers. Caregiver Awareness of Swallowing Disorder Symptoms In order to determine the awareness of the caregiver about the symptoms of swallowing disorders, 10 questions will be asked to the caregiver. The participant will answer each question as yes or no. In addition, the physiotherapist who made the assessment will observe the child during normal feeding and will answer the same questions asked to the participant as yes or no. The difference between the scores of the physiotherapist and caregiver will be used to determine the awareness of the caregiver. | 1 hour | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Demographic Information about caregiver | Age, gender, occupation, education level, family status, and duration of care for a child with swallowing disorder will be recorded. | 1 hour | 
| Child's Demographic Information | The child's age, gender, diagnosis, other accompanying diseases, nutritional status (oral, non-oral) will be recorded. | 1 hour | 
| Evaluation of Dysphagia | Pediatric Eating Assessment Tool (PEDI-EAT-10) will be used to determine dysphagia severity and risk of aspiration. PEDI-EAT-10 is a questionnaire consisting of 10 questions answered by caregivers. It scores between 0-40, an increase in the score indicates an increase in the severity of swallowing disorder. (7) | 1 hour | 
| Chewing Function: | Karaduman Chewing Performance Scale (KCPS) developed by developed by Arslan et al., chewing function is classified at 5 different levels between 0 - 4 (Level 0= normal chewing function, Level 4= The child cannot bite and chew)(8). | 1 hour | 
| Drooling: | Drooling intensity and frequency scale (DSFS) is a valid method used in children. Drooling intensity is examined at 5 levels and drooling frequency is examined at 4 different levels (9). | 1 hour | 
| Tongue Trust: | The tongue trust rating scale (TTRS), developed by Arslan et al., classifies the tongue thrust reflex severity between 0 and 3 according to the position of the tongue at rest (Level 0= no tongue trust, Level 3= severe tongue trust)(10). | 1 hour | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
caregiver, awareness, dysphagia, children