Psychological burden in spinal muscular atrophy patients and their families: a systematic review

Abstract

Abstract Background Spinal muscular atrophy (SMA) is an autosomal-recessive disorder that manifests in paralysis and skeletal muscle weaknesses. This neuromuscular problem is caused by degeneration of the spinal cord anterior horn cells. Main body of the abstract SMA leads to a decreased motoric function that affects patients’ daily activity and eventually induces the psychological burden. Given the increasing psychological burden of the patients and their families, this review summarizes the studies assessing the psychological burden of SMA patients and their families. We aimed to highlight the leading causes of their psychological burden. We systematically searched literature from the period 2011 to 2020 in two electronic databases by using the keywords “Spinal Muscular Atrophy”, “Psychology”, “Caregivers”, and “Burden”, then filtered it with the eligibility criteria and screened the abstract of the studies. By searching, screening, and filtering the studies, we included seven studies in this review. This review showed an increasing psychological burden in SMA patients, moreover for the parents. The dependency mainly causes the psychological burden since they eagerly struggle to achieve an everyday life. Conclusion Health professionals’ understanding capability regarding the mental condition of patients and their families is a potential aspect that can create better care. This review is encouraging for researchers and clinicians to have an enormous understanding of SMA.

Keywords

• Caregiver
• Family
• Psychological burden
• Spinal muscular atrophy