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

Jennifer L. Young*, Ashley Pantaleao, Lori Zaspel, Jessica Bayer, June A. Peters, Payal P. Khincha, Renee C. Bremer, Jennifer T. Loud, Mark H. Greene, Maria Isabel Achatz, Sharon A. Savage, Allison Werner-Lin

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

19 Scopus citations


Purpose: 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, yet some strategies may inadvertently increase disconnection. Implications: Mental health support is critical for both partners coping with LFS, together and separately.

Original languageEnglish (US)
Pages (from-to)178-193
Number of pages16
JournalJournal of Psychosocial Oncology
Issue number2
StatePublished - Mar 4 2019


  • Li-Fraumeni syndrome
  • coping
  • couples
  • family
  • hereditary cancer
  • qualitative

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Oncology
  • Applied Psychology


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