Self-regulation in Barth syndrome: a qualitative perspective of adolescents, adults and parents in the U.K.
Aidan SearleGeorgia HerbertLucy DabnerColin G StewardMichaela DaminGuido PielesPublished in: Orphanet journal of rare diseases (2021)
The findings support previous quantitative work demonstrating that children and parents tend to share a coherent view of BS. However, there is a need for greater awareness from others within the wider context of social and employment networks to minimise adverse implications for future life choices.