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

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

Author information

1
a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
2
b Family Science Department, School of Public Health , University of Maryland , College Park , Maryland , USA.
3
c School of Social Policy and Practice , University of Pennsylvania , Philadelphia , Pennsylvania , USA.

Abstract

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

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