Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence

AbstractPurpose: Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples’ coping with LFS-related burdens.Research approach: Constructivist grounded theory and anticipatory loss frameworks guided design and analysis.Sample and methods: Twenty-six individuals enrolled in the NCI LFS Family Study completed semi-structured interviews with their partner during annual screening visits. An interdisciplinary team completed open and focused coding to identify patterns of coping and adaptation.Findings: Couples described living with ambiguous danger, a state of chronic apprehension resulting from LFS-associated uncertainties. Most couples communicated openly and alternated shouldering the burden, while others engaged in protective buffering to shield each other from distress and sustain the appearance of normalcy.Interpretation: Optimally, coping reduces shared psychosocial distress, y...