PCR139 'We Have Conversations That Other Couples Don ′t Have to Have:' A Qualitative Study of the Impact of Caregiving in Friedreich Ataxia (FA)

In FA, a rare neuromuscular disease characterized by impaired motor function and speech, caregiving is typically required. A recent review of caregivers in rare inherited diseases identified gaps in understanding 1) mediators of burden, and 2) how impacts differ between parental and spousal caregivers. We sought to understand caregiver experiences in FA, and how impacts vary by caregiver type.

Source: Value in Health - December 1, 2023 Category: International Medicine & Public Health Authors: S. Szabo, A. Bever, D. Lynch, G. Vasco, P. Giunti, J. Vallortigara, I. Tomazos Source Type: research