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.
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.
Authors: Ashley Pantaleao; Jennifer L Young; Norman B Epstein; Mae Carlson; Renée C Bremer; Payal P Khincha; June A Peters; Mark H Greene; Kevin Roy; Maria Isabel Achatz; Sharon A Savage; Allison Werner-Lin Journal: Fam Process Date: 2019-10-24
Authors: Kelvin César de Andrade; Payal P Khincha; Jessica N Hatton; Megan N Frone; Talia Wegman-Ostrosky; Phuong L Mai; Ana F Best; Sharon A Savage Journal: Lancet Oncol Date: 2021-11-12 Impact factor: 41.316
Authors: Catherine Wilsnack; Jennifer L Young; Shana L Merrill; Victoria Groner; Jennifer T Loud; Renee C Bremer; Mark H Greene; Payal P Khincha; Allison Werner-Lin Journal: Health Soc Work Date: 2021-11-16
Authors: Cristina Fortuno; Kristy Lee; Magali Olivier; Tina Pesaran; Phuong L Mai; Kelvin C de Andrade; Laura D Attardi; Stephanie Crowley; D Gareth Evans; Bing-Jian Feng; Ann K M Foreman; Megan N Frone; Robert Huether; Paul A James; Kelly McGoldrick; Jessica Mester; Bryce A Seifert; Thomas P Slavin; Leora Witkowski; Liying Zhang; Sharon E Plon; Amanda B Spurdle; Sharon A Savage Journal: Hum Mutat Date: 2020-12-25 Impact factor: 4.700
Authors: Leatrisse Oba; Ana F Best; Phuong L Mai; Maria Isabel Achatz; Paul S Albert; Sharon A Savage; Payal P Khincha Journal: Fam Cancer Date: 2021-06-02 Impact factor: 2.446