Parent Perspectives of the Dyslexia Diagnosis Process
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A child who experiences difficulty learning how to read goes through many struggles and exhibits a myriad of symptoms and emotions. This response affects not only the individual child, but greatly impacts the entire family. Watching as your child struggles to learn how to read and not being able to help them can be a devastating feeling. Receiving the news that your child has dyslexia may trigger feelings of frustration, fear, sadness, or helplessness. Additionally, ongoing needs for advocacy, support, effective interventions, and appropriate accommodations for a child with dyslexia can cause continued family stress. A multidisciplinary team of researchers with a shared interest in this issue, representing the fields of school psychology, literacy education, educational diagnostics, special education, and counseling came together to investigate parents’ experiences and perspectives regarding their child’s diagnosis and treatment of dyslexia. The findings from this research study provide insights into the lived experiences of the children and their families with dyslexia; including those who suspect a reading problem, those who are currently going through the assessment process, or those who have already received a diagnosis of dyslexia. From preliminary data analyses, we will present some significant findings gleaned from data collected from this under-researched population. Far-reaching outcomes from this research study include providing valuable information to the fields of education, special education, and dyslexia intervention.
Topic: This research investigation reports parental perspectives of the experiences families undergo as a result of their children’s difficulties in learning how to read. The findings from this national research project are shared in hopes of helping families and educational professionals who support children with dyslexia and related disorders. | Data Collection Methodology: Recruitment for the mixed methodology study was completed electronically through a Qualtrics survey link which was shared with prospective participants through varied electronic platforms. Participants gave their informed consent on the first page of the survey and then screener questions were used to identify only parents of children ages 4-22 with difficulties in learning to read. If a participant met the specific inclusion criteria for the study, they were then prompted to respond to the survey questions. Data was collected from across the United States from a total of 659 parents of children with suspected or diagnosed dyslexia. The research team qualitatively analyzed participants’ responses regarding their experiences throughout the diagnosis process and verified the responses through quantitative data analysis of participants’ satisfaction with and stress related to the dyslexia diagnosis process. | Expected Findings: We will report parents' perspectives of their experiences surrounding dyslexia assessment and diagnosis, from initial concern to evaluation results. We will also share conclusions regarding how seeking assessment and undergoing the diagnostic process has impacted the child and their family. Findings reveal that several significant lifestyle changes may occur throughout the process - from initial parent uncertainty during evaluation and identification procedures to increased parental concern surrounding instructional needs for children diagnosed with dyslexia. Some of these lifestyle changes included significant travel time to and from tutoring or private schools, familial relocation in order for the child to receive appropriate treatment for dyslexia, change in schools, adjustments to parental expectations, and notable financial impact. Additional findings highlight the positive impact of advocacy for students with dyslexia. This support can occur before, during, or after the diagnosis process and can be implemented by parents, teachers, school counselors, diagnosticians, or psychologists.