ArticleJournal of psychosocial oncology
Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.
Article in Journal of psychosocial oncology. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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Who cites it
18 citing papers in PubMed.
- 'I told them they had to get tested, and they did': social influence among siblings with Li-Fraumeni syndrome.Psychology & health · 2026Article
- Digital Health Tools Embedded in a Cancer Genetics Clinic: Observational Study.JMIR formative research · 2026Observational
- Clinical Heterogeneity of aCase reports in genetics · 2026Article
- Psychosocial burdens and unmet supportive care needs of partners and relatives of individuals with Li-Fraumeni syndrome: A mixed-methods study.Journal of genetic counseling · 2025Article
- Navigating disclosure in new romantic partnerships as an adolescent or young adult with Li-Fraumeni syndrome.Familial cancer · 2025Article
- A "rotating menu" of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study.SSM. Qualitative research in health · 2024Article
- The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis.JMIR infodemiology · 2024Article
- Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease.Familial cancer · 2023Article
- Who Should Have Multigene Germline Testing for Hereditary Cancer?Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2022Article
- Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care.Patient education and counseling · 2022Article
- Health Behavior and Cancer Prevention among Adults with Li-Fraumeni Syndrome and Relatives in Germany-A Cohort Description.Current oncology (Toronto, Ont.) · 2022Article
- Utility of interim blood tests for cancer screening in Li-Fraumeni syndrome.Familial cancer · 2022Article
- Cancer incidence, patterns, and genotype-phenotype associations in individuals with pathogenic or likely pathogenic germline TP53 variants: an observational cohort study.The Lancet. Oncology · 2021Observational
- Family Identity and Roles in the Context of Li-Fraumeni Syndrome: "No One's Like Us Mutants".Health & social work · 2021Article
- Specifications of the ACMG/AMP variant interpretation guidelines for germline TP53 variants.Human mutation · 2021Article
- Case Report: Identification of a Novel Pathogenic GermlineFrontiers in genetics · 2021Article
- Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.Family process · 2020Article
- [Update on Li-Fraumeni syndrome].Der Pathologe · 2019Review
Corrections and comments
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Authors and funding
12 authors.
Funding
Abstract
purposeLi-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
methodsTwenty-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.
findingsCouples 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.
interpretationOptimally, 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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