"…They were just treating her Symptom by Symptom": maternal experiences of having a child with spinal muscular atrophy in Ghana.

ABSTRACT:

Background

Children with Spinal Muscular Atrophy (SMA) face the challenges of a rare condition impacting their motor neurons, placing substantial caregiving burdens on their mothers. Despite being primary caregivers, mothers of children with SMA in Ghana often find their voices unheard, with restricted access to vital interventions like counselling, support groups, and respite care designed to aid them. This study aimed to explore the experiences of mothers caring for children with SMA in Ghana, where the diagnosis is often delayed and support systems are limited.

Methods

We conducted an interpretative phenomenological study with a purposive sample of seven mothers whose children, aged between 8 and 24 months, were diagnosed with Spinal Muscular Atrophy (SMA) and registered

SUBMITTER: Tawiah ED 

PROVIDER: S-EPMC11786418 | biostudies-literature | 2025 Feb

REPOSITORIES: biostudies-literature