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How do young people with a hereditary cancer predisposition syndrome understand and experience cancer survivorship? "With Li‐Fraumeni syndrome, it's just an intermission".
- Published in:
- Psycho-Oncology, 2023, v. 32, n. 3, p. 375, doi. 10.1002/pon.6080
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- Publication type:
- Article
Health professionals' practice for young people with, or at risk of, Li–Fraumeni syndrome: An Australasian survey.
- Published in:
- Journal of Genetic Counseling, 2020, v. 29, n. 5, p. 737, doi. 10.1002/jgc4.1199
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- Publication type:
- Article
Correction to: Talking with Children about Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.
- Published in:
- Journal of Genetic Counseling, 2018, v. 27, n. 6, p. 1523, doi. 10.1007/s10897-018-0282-0
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- Publication type:
- Article
Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.
- Published in:
- Journal of Genetic Counseling, 2018, v. 27, n. 3, p. 533, doi. 10.1007/s10897-017-0191-7
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- Publication type:
- Article
Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations.
- Published in:
- Family Process, 2020, v. 59, n. 4, p. 1648, doi. 10.1111/famp.12497
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- Publication type:
- Article
Danger Zones: Risk Perceptions of Young Women From Families With Hereditary Breast and Ovarian Cancer.
- Published in:
- Family Process, 2007, v. 46, n. 3, p. 335, doi. 10.1111/j.1545-5300.2007.00215.x
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- Publication type:
- Article
Holding Parents So They Can Hold Their Children: Grief Work with Surviving Spouses to Support Parentally Bereaved Children.
- Published in:
- Omega: Journal of Death & Dying, 2012, v. 66, n. 1, p. 1
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- Publication type:
- Article
Growing Up with Grief: Revisiting the Death of a Parent Over the Life Course.
- Published in:
- Omega: Journal of Death & Dying, 2011, v. 63, n. 3, p. 271, doi. 10.2190/OM.63.3.e
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- Publication type:
- Article
Gratitude, protective buffering, and cognitive dissonance: How families respond to pediatric whole exome sequencing in the absence of actionable results.
- Published in:
- American Journal of Medical Genetics. Part A, 2018, v. 176, n. 3, p. 578, doi. 10.1002/ajmg.a.38613
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- Publication type:
- Article
' They Can't Find Anything Wrong with Him, Yet': Mothers' experiences of parenting an infant with a prenatally diagnosed copy number variant (CNV).
- Published in:
- American Journal of Medical Genetics. Part A, 2017, v. 173, n. 2, p. 444, doi. 10.1002/ajmg.a.38042
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- Publication type:
- Article
Reproduction and Genetic Responsibility: An Interpretive Description of Reproductive Decision-Making for Young People With Li-Fraumeni Syndrome.
- Published in:
- Qualitative Health Research, 2022, v. 32, n. 1, p. 168, doi. 10.1177/10497323211046240
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- Publication type:
- Article
Couple’s Narratives of Communion and Isolation Following Abnormal Prenatal Microarray Testing Results.
- Published in:
- Qualitative Health Research, 2016, v. 26, n. 14, p. 1975, doi. 10.1177/1049732315603367
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- Publication type:
- Article
In Their Own Words: Treating Very Young <i>BRCA1/2</i> Mutation-Positive Women with Care and Caution.
- Published in:
- PLoS ONE, 2014, v. 9, n. 2, p. 1, doi. 10.1371/journal.pone.0087696
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- Publication type:
- Article
A Systematic Review of How Young People Live with Inherited Disease: What Can We Learn for Li-Fraumeni Syndrome?
- Published in:
- Journal of Adolescent & Young Adult Oncology, 2018, v. 7, n. 5, p. 525, doi. 10.1089/jayao.2018.0028
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- Publication type:
- Article
'Something Extra on Chromosome 5': Parents' Understanding of Positive Prenatal Chromosomal Microarray Analysis (CMA) Results.
- Published in:
- Journal of Genetic Counseling, 2016, v. 25, n. 5, p. 1116, doi. 10.1007/s10897-016-9943-z
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- Publication type:
- Article
Balancing Genetics (Science) and Counseling (Art) in Prenatal Chromosomal Microarray Testing.
- Published in:
- Journal of Genetic Counseling, 2016, v. 25, n. 5, p. 855, doi. 10.1007/s10897-016-9966-5
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- Publication type:
- Article
A Survey of Genetic Counselors About the Needs of 18-25 Year Olds from Families with Hereditary Breast and Ovarian Cancer Syndrome.
- Published in:
- Journal of Genetic Counseling, 2015, v. 24, n. 1, p. 78, doi. 10.1007/s10897-014-9739-y
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- Publication type:
- Article
A Multi-Case Report of the Pathways To and Through Genetic Testing and Cancer Risk Management for BRCA Mutation-Positive Women Aged 18-25.
- Published in:
- Journal of Genetic Counseling, 2013, v. 22, n. 1, p. 27, doi. 10.1007/s10897-012-9521-y
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- Publication type:
- Article
Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation.
- Published in:
- American Journal of Critical Care, 2022, v. 31, n. 3, p. 230, doi. 10.4037/ajcc2022294
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- Publication type:
- Article
Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable.
- Published in:
- Hastings Center Report, 2019, v. 49, p. S61, doi. 10.1002/hast.1018
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- Publication type:
- Article
Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable.
- Published in:
- Hastings Center Report, 2019, v. 49, p. S61, doi. 10.1002/hast.1018
- By:
- Publication type:
- Article
That eagle covering me: transitioning and connected autonomy for emerging adults with cystinosis.
- Published in:
- Pediatric Nephrology, 2015, v. 30, n. 2, p. 281, doi. 10.1007/s00467-014-2921-5
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- Publication type:
- Article
An Observational Study of Children’s Involvement in Informed Consent for Exome Sequencing Research.
- Published in:
- Journal of Empirical Research on Human Research Ethics, 2017, v. 12, n. 1, p. 6, doi. 10.1177/1556264616674096
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- Publication type:
- Article
Waiting and "weighted down": the challenge of anticipatory loss for individuals and families with Li-Fraumeni Syndrome.
- Published in:
- Familial Cancer, 2020, v. 19, n. 3, p. 259, doi. 10.1007/s10689-020-00173-6
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- Publication type:
- Article
‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24.
- Published in:
- 2012
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- Publication type:
- Journal Article
‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24.
- Published in:
- Health: An Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, 2012, v. 16, n. 6, p. 636, doi. 10.1177/1363459312442420
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- Publication type:
- Article
Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.
- Published in:
- 2012
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- Publication type:
- journal article
Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations.
- Published in:
- Cancer (0008543X), 2012, v. 118, n. 24, p. 6270, doi. 10.1002/cncr.27695
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- Publication type:
- Article
Benefits and burdens of risk management for young people with inherited cancer: A focus on Li-Fraumeni syndrome.
- Published in:
- Australian Journal of General Practice, 2021, v. 50, n. 8, p. 538, doi. 10.31128/ajgp-04-21-5954
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- Publication type:
- Article
Diet and physical activity behaviors: how are they related to illness perceptions, coping, and health-related quality of life in young people with hereditary cancer syndromes?
- Published in:
- Journal of Behavioral Medicine, 2024, v. 47, n. 4, p. 707, doi. 10.1007/s10865-024-00489-z
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- Publication type:
- Article
Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.
- Published in:
- Journal of Family Nursing, 2019, v. 25, n. 1, p. 28, doi. 10.1177/1074840718815844
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- Publication type:
- Article
Family Identity and Roles in the Context of Li-Fraumeni Syndrome: "No One's Like Us Mutants".
- Published in:
- Health & Social Work, 2021, v. 46, n. 4, p. 299, doi. 10.1093/hsw/hlab032
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- Publication type:
- Article
Leadership, Literacy, and Translational Expertise in Genomics: Challenges and Opportunities for Social Work.
- Published in:
- Health & Social Work, 2016, v. 41, n. 3, p. e52, doi. 10.1093/hsw/hlw022
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- Publication type:
- Article
There’s No Place Like Home: Preparing Children for Geographical and Relational Attachment Disruptions Following Parental Death to Cancer.
- Published in:
- 2010
- By:
- Publication type:
- Case Study