136P Medical treatment of children with spinal muscular atrophy - An investigation of parents' experiences of hopes, worries and need for rehabilitation for their child

• Published in: Neuromuscular disorders : NMD 2024-10, Vol.43, p.104441, Article 104441.34
• Main Authors: Handberg, C., Werlauff, U., Drivsholm, P., Lorenzen, S., Mahoney, A.
• Format: Article
• Language: English
• ISSN: 0960-8966
• DOI: 10.1016/j.nmd.2024.07.043

In Denmark, newborn screening was introduced at the beginning of 2023, and per July 2023 the Medical Council recommended medical treatment of SMA for children, young people, and adults up to and including 25 years of age who meet the inclusion criteria in the treatment guidelines. The medical advances give both children, parents and health professionals hope for a new life with SMA. The children receive treatment at the pediatric departments at university hospitals in Denmark and most of them are referred to the Danish National Rehabilitation Centre for Neuromuscular Diseases (RCFM) where they and their families receive guidance and advice from rehabilitation specialists. There is currently scant knowledge about how parents of a child with SMA type 1, 2 or 3 experience their child's illness, their contact with health professionals, and their needs for information and advice on the medical treatments and its effect. The aim of the project is to gain knowledge about how Danish parents whose children with SMA have been offered medical treatment handle hopes and worries in relation to disease progression. And to investigate the families’ needs for information, advice, and rehabilitation initiatives. The study was designed as a qualitative interview study guided by the interpretive description methodology and Joyce Travelbee's theory of interpersonal aspects such as suffering, meaning, hope and communication. The method was semi-structured couple interviews with parents of children with SMA type 1, 2 and 3 aged 14 and younger. In all, 41 couples with children registered at RCFM were invited to participate. Nineteen couples (38 parents) accepted the invitation. The analysis is ongoing, and the results will be presented on the conference poster.