Lived experiences among families of children with spinal muscular atrophy

Abstract

Spinal Muscular Atrophy (SMA) is one of the rare diseases in Ghana, but little is known regarding its challenges and how it impacts families caring for those children. This research provided an understanding of the lived experiences of families in Ghana with children who have been diagnosed with SMA. Seven families, each having a child diagnosed with SMA, were purposively selected and interviewed using a semi-structured guide. The interpretative phenomenological analysis method was utilised to explore the challenges and experiences these family’s encounter. The findings revealed the complex physical, psychological, and social challenges families face when caring for a child with SMA. These experiences included grief, stress, aches, isolation, hopelessness, regrets, and financial burdens. It was also found that some family dynamics and relationships were affected. These families demonstrated remarkable coping mechanisms in adapting to the demands of SMA. These strategies encompassed seeking social support, finding hope through information seeking, and adopting positive reframing techniques. Most families had their religiosity negatively impacted while their spirituality remained intact as they held on to hope for better days. Understanding the lived experiences of families with children diagnosed with SMA can inform healthcare professionals, support organisations, and policymakers in creating more tailored and effective interventions.