Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs.

ABSTRACT:

Background

Spinal muscular atrophy (SMA) is a rare degenerative neuromuscular disease, mostly occurring in infants and children, leading to muscle wasting and weakness, and premature death. Due to new developments of multiple disease-modifying treatments within the last years, the interest of research in patients affected by SMA increased steadily. However, the psychosocial situation of parents as informal caregivers is still rarely addressed.

Objectives

This review aims to highlight quantitative and qualitative data about the psychosocial situation, caregiver burden, and needs of parents as informal caregivers for children and adolescents with SMA.

Methods

A systematic literature review was performed including quantitative and qualitative original studies focusing on

SUBMITTER: Brandt M 

PROVIDER: S-EPMC9295422 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature