The master's thesis examines the experiences of parents of children with Duchenne muscular dystrophy and the challenges and needs families face when including their children in the educational system. It focuses on parents’ experiences, their collaboration with professionals, and the educational accommodations and forms of support they identify as essential for successful inclusion in the school environment.
The theoretical part defines Duchenne muscular dystrophy as a rare, progressive disease and presents its characteristics, course, diagnosis, and treatment. It also addresses the psychosocial aspects of the condition, including cognitive, behavioral, and social characteristics of children, as well as the impact of the disease on quality of life. Particular attention is given to the child’s family, especially coping with the diagnosis, the impact of the disease on family life, and parental burden. Furthermore, the thesis discusses the inclusion of children in the educational process, the importance of educational accommodations, and collaboration between parents and professionals.
The research is based on a qualitative approach. Data were collected through semi-structured interviews with five mothers of children with Duchenne muscular dystrophy enrolled in different educational programs and analyzed using thematic analysis, with themes developed inductively from the data. The results show that receiving the diagnosis represents a highly emotionally demanding process for parents, accompanied by uncertainty, feelings of helplessness, and a need for clear information. In the later period, family life becomes largely adjusted to the disease, which is reflected in changes in daily organization and increased psychological burden. In the educational context, key challenges include children’s fatigue, the progressive nature of the disease, the need for individualized educational accommodations, and uneven access to support. Important factors also include professionals’ understanding of the disease, the quality of communication, and parental involvement in planning support.
The findings can contribute to a better understanding of the situation of families of children with Duchenne muscular dystrophy and highlight gaps between recommendations and practice. They emphasize the importance of timely, continuous, and individualized support, as well as the need to strengthen collaboration between the healthcare and educational systems.
|
