Lived Experiences of Primary Caregivers of Children with Dyslexia: A Phenomenological Study

Background: Caregivers play an important role in children's development. Therefore, they need to recognize the learning difficulties that their children face and support them to ensure learning gains and prevent secondary complications. Nevertheless, supporting a child with a learning disability can be challenging for caregivers in many ways. This study investigated caregivers' knowledge of dyslexia, their challenges when raising children with dyslexia, and the support they seek to raise such children. Methods: Ten individual in-depth interviews (IDIs) and four focus group discussions (FGDs) were conducted among 30 caregivers in Sri Lanka. Initial codes were generated using open coding from the transcripts, leading to sub-themes and themes. Results: Thematic analysis revealed a lack of knowledge of dyslexia-type difficulties among caregivers and in society, giving rise to misconceptions, leading to labeling and abuse of children. Caregivers feel emotionally pressured, helpless, stressed, and depressed in bringing up children with dyslexia, creating family disputes. Further, as a family, they have a sense of rejection and discrimination from school and society. Caregivers receive insufficient support from the education and health sectors due to multiple complexities such as myths, misbeliefs, inadequate knowledge and skills, unavailability of resources, and inaccessibility to services. Conclusions: Caregivers and families of children with learning disabilities demand more attention to improve their mental health and family harmony, which in turn improves children's educational and health status. Sri Lankan health, educational, and social services should be optimized to reach the families of children with dyslexia-type difficulties.