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

J Psychosoc Oncol. Mar-Apr 2019;37(2):178-193. doi: 10.1080/07347332.2018.1543376. Epub 2018 Dec 28.


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.

Keywords: Li-Fraumeni syndrome; coping; couples; family; hereditary cancer; qualitative.

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Aged
  • Female
  • Humans
  • Interpersonal Relations*
  • Li-Fraumeni Syndrome / diagnosis
  • Li-Fraumeni Syndrome / psychology*
  • Male
  • Mass Screening / psychology*
  • Middle Aged
  • Psychological Distress
  • Qualitative Research
  • Spouses / psychology*
  • Spouses / statistics & numerical data
  • Uncertainty*
  • Young Adult