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

Jennifer L. Young; Ashley Pantaleao; Lori Zaspel; Jessica Bayer; June A. Peters; Payal P. Khincha; Renee C. Bremer; Jennifer T. Loud; Mark H. Greene; Maria Isabel Achatz; Sharon A. Savage; Allison Werner-Lin

doi:10.1080/07347332.2018.1543376

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

Jennifer L. Young^*, Ashley Pantaleao, Lori Zaspel, Jessica Bayer, June A. Peters, Payal P. Khincha, Renee C. Bremer, Jennifer T. Loud, Mark H. Greene, Maria Isabel Achatz, Sharon A. Savage, Allison Werner-Lin

^*Corresponding author for this work

Medical Social Sciences

Research output: Contribution to journal › Article › peer-review

17 Scopus citations

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.

Original language	English (US)
Pages (from-to)	178-193
Number of pages	16
Journal	Journal of Psychosocial Oncology
Volume	37
Issue number	2
DOIs	https://doi.org/10.1080/07347332.2018.1543376
State	Published - Mar 4 2019

Keywords

coping
couples
family
hereditary cancer
Li-Fraumeni syndrome
qualitative

ASJC Scopus subject areas

Oncology
Applied Psychology
Psychiatry and Mental health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1080/07347332.2018.1543376

Cite this

Young, J. L., Pantaleao, A., Zaspel, L., Bayer, J., Peters, J. A., Khincha, P. P., Bremer, R. C., Loud, J. T., Greene, M. H., Achatz, M. I., Savage, S. A., & Werner-Lin, A. (2019). Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence. Journal of Psychosocial Oncology, 37(2), 178-193. https://doi.org/10.1080/07347332.2018.1543376

@article{7f5f441422bd43ac8ed5f135cbf75882,

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

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{\textquoteright} 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 = "coping, couples, family, hereditary cancer, Li-Fraumeni syndrome, qualitative",

author = "Young, {Jennifer L.} and Ashley Pantaleao and Lori Zaspel and Jessica Bayer and Peters, {June A.} and Khincha, {Payal P.} and Bremer, {Renee C.} and Loud, {Jennifer T.} and Greene, {Mark H.} and Achatz, {Maria Isabel} and Savage, {Sharon A.} and Allison Werner-Lin",

note = "Publisher Copyright: {\textcopyright} 2018, {\textcopyright} 2018 Taylor & Francis Group, LLC.",

year = "2019",

month = mar,

day = "4",

doi = "10.1080/07347332.2018.1543376",

language = "English (US)",

volume = "37",

pages = "178--193",

journal = "Journal of Psychosocial Oncology",

issn = "0734-7332",

publisher = "Routledge",

number = "2",

}

Young, JL, Pantaleao, A, Zaspel, L, Bayer, J, Peters, JA, Khincha, PP, Bremer, RC, Loud, JT, Greene, MH, Achatz, MI, Savage, SA & Werner-Lin, A 2019, 'Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence', Journal of Psychosocial Oncology, vol. 37, no. 2, pp. 178-193. https://doi.org/10.1080/07347332.2018.1543376

TY - JOUR

T1 - Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome

T2 - Connection versus independence

AU - Young, Jennifer L.

AU - Pantaleao, Ashley

AU - Zaspel, Lori

AU - Bayer, Jessica

AU - Peters, June A.

AU - Khincha, Payal P.

AU - Bremer, Renee C.

AU - Loud, Jennifer T.

AU - Greene, Mark H.

AU - Achatz, Maria Isabel

AU - Savage, Sharon A.

AU - Werner-Lin, Allison

PY - 2019/3/4

Y1 - 2019/3/4

N2 - 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.

AB - 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.

KW - coping

KW - couples

KW - family

KW - hereditary cancer

KW - Li-Fraumeni syndrome

KW - qualitative

UR - http://www.scopus.com/inward/record.url?scp=85059473495&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85059473495&partnerID=8YFLogxK

U2 - 10.1080/07347332.2018.1543376

DO - 10.1080/07347332.2018.1543376

M3 - Article

C2 - 30591002

AN - SCOPUS:85059473495

VL - 37

SP - 178

EP - 193

JO - Journal of Psychosocial Oncology

JF - Journal of Psychosocial Oncology

SN - 0734-7332

IS - 2

ER -

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

Abstract

Keywords

ASJC Scopus subject areas

UN SDGs

Access to Document

Other files and links

Fingerprint

Cite this