Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy

Abstract

Spinal muscular atrophy (SMA) is a neurodegenerative disorder that is characterized by progressive weakness, respiratory insufficiency, and dysphagia. Due to symptom burden and disease progress, its care management and impact on daily life can severely burden the families of affected children. The objectives of this study are (1) to explore the health care experiences and (2) to investigate the psychosocial needs of the parents of children with SMA. In total, 29 parents of patients with SMA participated in our study. All children received supportive therapy (e.g., physiotherapy) and most were dependent on medical equipment. Parents perceived the health care positively regarding team quality, communication and access to medical care. An assessment of the impact of the child’s health on the family (e.g., stressors, burden, consequences) is not routinely integrated into care. On average, parents reported low to medium levels of psychosocial needs. Due to the complex health care needs of SMA patients, the health care experiences of parents can provide relevant information on care delivery. To enhance the inclusion of psychosocial and emotional issues, as well as family impact, into routine health care, health care providers should be sensitive towards parental needs for consistency in the health care team and emotional aspects and, if applicable, address them proactively.

The socioeconomic burden of spinal muscular atrophy in Saudi Arabia: a cross-sectional pilot study

“…The varying severity of SMA has significant impacts on patients and their families, leading to financial strain, psychological challenges, sleep disturbances, and social limitations ( 17 , 18 ). Comprehensive support mechanisms are needed, including psychological counseling, legal advice, genetic counseling, and family planning.…”