Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study.

ABSTRACT:

Background

Spinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families.

Objectives

The aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®).

Methods

We conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zo

SUBMITTER: Brandt M 

PROVIDER: S-EPMC11488358 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature