title: Formal and informal support needs of young women with BRCA mutations.
abstract: This qualitative investigation aims to identify the salient support concerns of young women with BRCA mutations, a frequently understudied population with unique developmental, psychosocial, and family needs. Twenty-three unaffected BRCA gene alteration carriers aged 21 to 36 completed illness genograms and open-ended interviews. Transcripts were analyzed using the Listening Guide to highlight key themes, relationships, and meaning structures. Results reveal existing social support networks composed of family, partners, friends, and coworkers are often inadequate and formal services unavailable or underutilized. These findings suggest an important role for clinicians in reducing isolation, bolstering existing support networks, and designing innovative, targeted interventions that address the challenges specific to this age group. Interventions, such as the multifamily support group, should be integrated into genetic counseling protocols to mitigate the risk of distress.
authors.affiliation: New York University, New York, NY 10003, USA. awernerlin@nyu.edu
authors.forename: Allison
authors.initials: A
authors.lastname: Werner-Lin
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology; D001943:Breast Neoplasms / Q000235:genetics*; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006301:Health Services Needs and Demand; D006801:Humans; D017354:Point Mutation / Q000235:genetics*; D012944:Social Support; D011795:Surveys and Questionnaires