Psychosocial functioning in parents of mps iii patients

Thesis Abstract

Abstract
Mucopolysaccharidosis type III (MPS III), also known as Sanfilippo syndrome, is a rare genetic disorder characterized by the body's inability to break down large sugar molecules called glycosaminoglycans. This results in the accumulation of these molecules in cells, leading to progressive damage throughout the body, including the brain. Parents of children with MPS III face significant challenges in caring for their affected child due to the severe and progressive nature of the disease. The psychosocial functioning of parents of MPS III patients is an important area of study as it can have a profound impact on both the well-being of the parents themselves and the quality of care provided to the affected child. Research indicates that parents of children with chronic and life-limiting conditions often experience high levels of stress, anxiety, depression, and social isolation. These challenges can be further exacerbated in the case of MPS III due to the progressive nature of the disease and the complex care needs of affected children. Studies examining the psychosocial functioning of parents of MPS III patients have found that many parents experience significant levels of emotional distress, including symptoms of anxiety and depression. These parents also report high levels of caregiving burden, as caring for a child with MPS III can be physically and emotionally demanding. In addition, parents may experience feelings of grief and loss as they come to terms with the impact of the disease on their child's development and future. Social support has been identified as a key factor in mitigating the psychosocial challenges faced by parents of MPS III patients. Access to support from healthcare professionals, family members, and other parents of children with MPS III can help parents cope with the emotional and practical demands of caring for an affected child. Interventions aimed at enhancing social support and providing psychological support to parents may help improve their overall well-being and ability to cope with the challenges of caring for a child with MPS III. In conclusion, the psychosocial functioning of parents of MPS III patients is a complex and important area of study that warrants further research and the development of targeted interventions to support parents in their caregiving role. By understanding the unique challenges faced by these parents, healthcare professionals can better support them in providing the best possible care for their affected child.