Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.
J Psychosoc Oncol
; 37(2): 178-193, 2019.
Article
in En
| MEDLINE
| ID: mdl-30591002
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. RESEARCHAPPROACH:
Constructivist grounded theory and anticipatory loss frameworks guided design and analysis. SAMPLE ANDMETHODS:
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.Key words
Full text:
1
Database:
MEDLINE
Main subject:
Adaptation, Psychological
/
Mass Screening
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Li-Fraumeni Syndrome
/
Spouses
/
Uncertainty
/
Interpersonal Relations
Type of study:
Diagnostic_studies
/
Prognostic_studies
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Qualitative_research
/
Screening_studies
Limits:
Adult
/
Aged
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Female
/
Humans
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Male
/
Middle aged
Language:
En
Journal:
J Psychosoc Oncol
Year:
2019
Type:
Article
Affiliation country:
United States