Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.

ABSTRACT: Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles a

SUBMITTER: Pantaleao A 

PROVIDER: S-EPMC7434614 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature