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Journal of Psychosocial Oncology Volume 37, 2019 - Issue 2: Innovations and Real World Applications in Relationship Research in Cancer; Guest editors: Dr. Hoda Badr and Dr. Jennifer Reese
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Original Articles

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

Jennifer L. YoungClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA; ;Family Science Department, School of Public Health, University of Maryland, College Park, Maryland, USA; Correspondence[email protected]
, PhD, LGMFT,
Ashley PantaleaoFamily Science Department, School of Public Health, University of Maryland, College Park, Maryland, USA;
, MA,
Lori ZaspelSchool of Social Policy and Practice, University of Pennsylvania, Philadelphia, Pennsylvania, USA
, MS,
Jessica BayerClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
,
June A. PetersClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
, MS,
Payal P. KhinchaClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
,
Renee C. BremerClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
, MS,
Jennifer T. LoudClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
, RN, CRNP, DNP,
Mark H. GreeneClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
, MD,
Maria Isabel AchatzClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
, MD, MSc, PhD,
Sharon A. SavageClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA;
, MD &
Allison Werner-LinClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland, USA; ;School of Social Policy and Practice, University of Pennsylvania, Philadelphia, Pennsylvania, USA
, PhD, AM, EdM, LCSW show all
Pages 178-193 | Published online: 28 Dec 2018
 
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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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