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Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.
Young, Jennifer L; Pantaleao, Ashley; Zaspel, Lori; Bayer, Jessica; Peters, June A; Khincha, Payal P; Bremer, Renee C; Loud, Jennifer T; Greene, Mark H; Achatz, Maria Isabel; Savage, Sharon A; Werner-Lin, Allison.
Affiliation
  • Young JL; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Pantaleao A; b Family Science Department, School of Public Health , University of Maryland , College Park , Maryland , USA.
  • Zaspel L; b Family Science Department, School of Public Health , University of Maryland , College Park , Maryland , USA.
  • Bayer J; c School of Social Policy and Practice , University of Pennsylvania , Philadelphia , Pennsylvania , USA.
  • Peters JA; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Khincha PP; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Bremer RC; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Loud JT; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Greene MH; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Achatz MI; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Savage SA; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
  • Werner-Lin A; a Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics , National Cancer Institute , Rockville , Maryland , USA.
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. 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.
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Full text: 1 Database: MEDLINE Main subject: Adaptation, Psychological / Mass Screening / Li-Fraumeni Syndrome / Spouses / Uncertainty / Interpersonal Relations Type of study: Diagnostic_studies / Prognostic_studies / Qualitative_research / Screening_studies Limits: Adult / Aged / Female / Humans / Male / Middle aged Language: En Journal: J Psychosoc Oncol Year: 2019 Type: Article Affiliation country: United States
Fulltext
Add to My VHL
Print
XML
PubMed Links
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Full text: 1 Database: MEDLINE Main subject: Adaptation, Psychological / Mass Screening / Li-Fraumeni Syndrome / Spouses / Uncertainty / Interpersonal Relations Type of study: Diagnostic_studies / Prognostic_studies / Qualitative_research / Screening_studies Limits: Adult / Aged / Female / Humans / Male / Middle aged Language: En Journal: J Psychosoc Oncol Year: 2019 Type: Article Affiliation country: United States