ArticleJournal of genetic counseling2016
Easing the Burden: Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li-Fraumeni Syndrome.
Article in Journal of genetic counseling, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.
- Baseline Surveillance in Li-Fraumeni Syndrome Using Whole-Body Magnetic Resonance Imaging: A Meta-analysis.JAMA oncology · 2017Pooled it
- Chatbot Intervention and Cancer Risk Knowledge in Adolescents and Young Adults With Cancer Predisposition: A Randomized Clinical Trial.JAMA network open · 2026Trial
- Psychosocial morbidity in TP53 mutation carriers: is whole-body cancer screening beneficial?Familial cancer · 2017Trial
- Concerns about the consequences of cancer predisposition and relationships with quality of life in young adults with Li-Fraumeni syndrome.European journal of human genetics : EJHG · 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
- Health-related quality of life and fear of progression in individuals with Li-Fraumeni syndrome.Journal of genetic counseling · 2025Article
- The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis.JMIR infodemiology · 2024Article
- Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care.Patient education and counseling · 2022Article
- Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body.Social science & medicine (1982) · 2022Article
- 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
- Quantification of Discordant Variant Interpretations in a Large Family-Based Study of Li-Fraumeni Syndrome.JCO precision oncology · 2021Article
- Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.Family process · 2020Article
- Waiting and "weighted down": the challenge of anticipatory loss for individuals and families with Li-Fraumeni Syndrome.Familial cancer · 2020Article
- Prevalence of Cancer at Baseline Screening in the National Cancer Institute Li-Fraumeni Syndrome Cohort.JAMA oncology · 2017Article
- The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
- Li-Fraumeni Syndrome.Journal of the advanced practitioner in oncologyReview
- Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.Journal of psychosocial oncologyArticle
Corrections and comments
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Authors and funding
6 authors at 4 institutions in 1 country.
Funding
Abstract
This study presents findings of a mixed-method descriptive exploration of the role of friends and spirituality/religiosity in easing the burden of families with the rare inherited disorder, Li-Fraumeni Syndrome (LFS). LFS is caused by germline mutations in the TP53 gene and is associated with very high lifetime risk of developing one or more malignancies. During the first clinical visit we assessed several types of social support among a subset of study participants (N = 66) using an established interactive research tool called the Colored Eco-Genetic Relationship Map (CEGRM). We performed both quantitative and qualitative analyses of social relationships with LFS family members and close non-kin. Distress scores (N = 59) were mostly low normal, with some outliers. We found that reported friendships varied widely, that the friendships were often deep and enduring, and were important sources of informational, tangible, emotional and spiritual support. Confidantes tended to be best friends and/or spouses. Organized religion was important in selected families, typically from mainstream traditions. However, a number of people identified themselves as "spiritual" and reported spiritual and humanist explorations. Our results shed preliminary light on how some people in families with LFS cope in the face of tremendous medical, social and emotional challenges.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.