Literature DB >> 29383546

Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.

Allison Werner-Lin1, Shana L Merrill2, Amanda C Brandt3, Rachel E Barnett, Ellen T Matloff.   

Abstract

Families often express difficulty to their providers and request guidance regarding the task of communicating with children about potential adult-onset inherited cancer risks. This disclosure is often complicated by the parent's ongoing adjustment to their mutation status, guilt at potential transmission of the mutation to the child, concern over inciting distress in children, and the varied capacities of children in the home to understand genetic information. Providers often do not have adequate resources to support or facilitate disclosure of genetic test results to children. Optimally, communication about inherited cancer risk is an open, ongoing process within the family. We recommend that parents tailor conversations to the child's developmental, cognitive, emotional, and behavioral abilities to support comprehension. Based on well-established theories of child development, empirical research on family communication of hereditary cancer risk, and clinical counseling experience, we offer recommendations for parental disclosure of genetic risk to children, case examples with critical discussion of relevant topics, common child questions with sample scripted responses, and additional printed and online resources.

Entities:  

Keywords:  Cancer genetic counseling; Children; Family communication; Health communication; Hereditary breast and ovarian cancer syndrome; Lynch syndrome

Mesh:

Year:  2018        PMID: 29383546     DOI: 10.1007/s10897-017-0191-7

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  33 in total

1.  Emerging adulthood. A theory of development from the late teens through the twenties.

Authors:  J J Arnett
Journal:  Am Psychol       Date:  2000-05

Review 2.  Genetic dilemmas and the child's right to an open future.

Authors:  D S Davis
Journal:  Hastings Cent Rep       Date:  1997 Mar-Apr       Impact factor: 2.683

3.  Implications of Internet availability of genomic information for public health practice.

Authors:  B W Hesse; N K Arora; M J Khoury
Journal:  Public Health Genomics       Date:  2012-04-04       Impact factor: 2.000

4.  Health first, genetics second: exploring families' experiences of communicating genetic information.

Authors:  Laura E Forrest; Lisette Curnow; Martin B Delatycki; Loane Skene; Maryanne Aitken
Journal:  Eur J Hum Genet       Date:  2008-05-21       Impact factor: 4.246

5.  Social learning theory and the Health Belief Model.

Authors:  I M Rosenstock; V J Strecher; M H Becker
Journal:  Health Educ Q       Date:  1988

6.  Parents' communication with siblings of children affected by an inherited genetic condition.

Authors:  Gillian Plumridge; Alison Metcalfe; Jane Coad; Paramjit Gill
Journal:  J Genet Couns       Date:  2011-04-19       Impact factor: 2.537

7.  Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome.

Authors:  Allyn McConkie-Rosell; Elizabeth Melvin Heise; Gail A Spiridigliozzi
Journal:  J Genet Couns       Date:  2009-03-11       Impact factor: 2.537

8.  Learning of your parent's BRCA mutation during adolescence or early adulthood: a study of offspring experiences.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Kimberly Pawlowski; Comfort N Ibe; Shelly A Cummings; Fay Hlubocky; Olufunmilayo I Olopade; Christopher K Daugherty
Journal:  Psychooncology       Date:  2009-02       Impact factor: 3.894

9.  How often do BRCA mutation carriers tell their young children of the family's risk for cancer? A study of parental disclosure of BRCA mutations to minors and young adults.

Authors:  Angela R Bradbury; James J Dignam; Comfort N Ibe; Sogyong L Auh; Fay J Hlubocky; Shelly A Cummings; Melody White; Olufunmilayo I Olopade; Christopher K Daugherty
Journal:  J Clin Oncol       Date:  2007-08-20       Impact factor: 44.544

10.  How should risk be communicated to children: a cross-sectional study comparing different formats of probability information.

Authors:  Fiona Ulph; Ellen Townsend; Cris Glazebrook
Journal:  BMC Med Inform Decis Mak       Date:  2009-06-05       Impact factor: 2.796

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  6 in total

1.  Correction to: Talking with Children about Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.

Authors:  Allison Werner-Lin; Shana L Merrill; Amanda C Brandt; Rachel E Barnett; Ellen T Matloff
Journal:  J Genet Couns       Date:  2018-12       Impact factor: 2.537

2.  Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.

Authors:  Kelsey Stuttgen; Allison McCague; Juli Bollinger; Rachel Dvoskin; Debra Mathews
Journal:  J Genet Couns       Date:  2020-07-23       Impact factor: 2.537

Review 3.  Cancer Genetic Counseling-Current Practice and Future Challenges.

Authors:  Jaclyn Schienda; Jill Stopfer
Journal:  Cold Spring Harb Perspect Med       Date:  2020-06-01       Impact factor: 5.159

4.  When to break the news and whose responsibility is it? A cross-sectional qualitative study of health professionals' views regarding disclosure of BRCA genetic cancer risk.

Authors:  Alison Luk Young; Phyllis N Butow; Katherine M Tucker; Claire E Wakefield; Emma Healey; Rachel Williams
Journal:  BMJ Open       Date:  2020-02-25       Impact factor: 2.692

Review 5.  Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review.

Authors:  Pedro Gomes; Giada Pietrabissa; Eunice R Silva; João Silva; Paula Mena Matos; Maria Emília Costa; Vanessa Bertuzzi; Eliana Silva; Maria Carolina Neves; Célia M D Sales
Journal:  Int J Environ Res Public Health       Date:  2022-01-30       Impact factor: 3.390

6.  "I'm walking on eggshells": challenges faced by mothers with breast cancer in interacting with adolescent daughters.

Authors:  Pingting Zhu; Qiaoying Ji; Xinyi Liu; Ting Xu; Qiwei Wu; Yuejuan Wang; Xu Gao; Ziheng Zhou
Journal:  BMC Womens Health       Date:  2022-09-20       Impact factor: 2.742

  6 in total

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