Self-regulation in Barth syndrome: a qualitative perspective of adolescents, adults and parents in the U.K.

ABSTRACT:

Background

Barth syndrome (BS) is a life-threatening genetic disease caused by abnormal lipids in the mitochondria of cells and mostly affects young males. Those living with BS have severe exercise intolerance, lethargy and fatigue due to muscle disease which affect their daily life. Previous research suggests a need for qualitative exploration of self-regulation in BS and the inter-personal processes at play in family life. Therefore this study aimed to explore self-regulation and coping strategies and inter-personal responses in individuals and families affected by Barth syndrome. A multi-perspective qualitative study based on face to face, semi-structured, in-depth interviews with 11 participants (9-27 years, mean 15 years) with BS and/or their parents participating in a randomi

SUBMITTER: Searle A 

PROVIDER: S-EPMC8482682 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature