ArticleJournal of genetic counseling2009
Genetic risk communication: experiences of adolescent girls and young women from families with fragile X syndrome.
Article in Journal of genetic counseling, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed, 41 citations in OpenAlex.
- Parent perspectives on disclosing a pediatric neurofibromatosis type 1 diagnosis.Journal of genetic counseling · 2023Article
- Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy.BMC pediatrics · 2022Article
- Parents' perspectives, experiences, and need for support when communicating with their children about the psychiatric manifestations of 22q11.2 deletion syndrome (22q11DS).Journal of community genetics · 2022Article
- Men with an FMR1 premutation and their health education needs.Journal of genetic counseling · 2021Article
- The Process of Disclosure: Mothers' Experiences of Communicating X-Linked Carrier Risk Information to At-Risk Daughters.Journal of genetic counseling · 2018Article
- Talking with Children About Adult-Onset Hereditary Cancer Risk: A Developmental Approach for Parents.Journal of genetic counseling · 2018Article
- Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families.Journal of genetic counseling · 2017Article
- Family Communication and Cascade Testing for Fragile X Syndrome.Journal of genetic counseling · 2016Article
- Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.European journal of human genetics : EJHG · 2016Article
- Experience with genetic counseling: the adolescent perspective.Journal of genetic counseling · 2016Article
- Exploring the Discussion of Risk of Sudden Cardiac Death.Pediatric cardiology · 2016Article
- Parental Communication and Experiences and Knowledge of Adolescent Siblings of Children with 22q11.2 Deletion Syndrome.Journal of genetic counseling · 2015Article
- A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders.Journal of intellectual disability research : JIDR · 2015Article
- "How should I tell my child?" Disclosing the diagnosis of sex chromosome aneuploidies.Journal of genetic counseling · 2015Article
- Developmental and behavioral pediatricians' attitudes toward screening for fragile X.American journal on intellectual and developmental disabilities · 2013Article
- Assessment of parental disclosure of a 22q11.2 deletion syndrome diagnosis and implications for clinicians.Journal of genetic counseling · 2012Article
- Influence of genetic risk information on parental role identity in adolescent girls and young women from families with fragile X syndrome.Journal of genetic counseling · 2012Article
- Parents' communication with siblings of children affected by an inherited genetic condition.Journal of genetic counseling · 2011Article
- Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.European journal of human genetics : EJHG · 2011Article
- Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.Journal of genetic counseling · 2011Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
Abstract
Little is known about how and what genetic risk information parents communicate to their children and even less is known about what children hear and remember. To address this void, we explored how genetic risk information was learned, what information was given and who primarily provided information to adolescent girls and young adult women in families with fragile X syndrome. We explored three levels of risk knowledge: learning that fragile X syndrome was an inherited disorder, that they could be a carrier, and for those who had been tested, actual carrier status. These data were collected as part of a study that also explored adolescent self concept and age preferences about when to inform about genetic risk. Those findings have been presented separately. The purpose of this paper is to present the communication data. Using a multi-group cross-sectional design this study focused on girls ages 14-25 years from families previously diagnosed with fragile X syndrome, 1) who knew they were carriers (n = 20), 2) noncarriers (n = 18), or 3) at-risk to be carriers (n = 15). For all three stages of information the majority of the study participants were informed by a family member. We identified three different communication styles: open, sought information, and indirect. The content of the remembered conversations varied based on the stage of genetic risk information being disclosed as well as the girls' knowledge of her own carrier status. Girls who had been tested and knew their actual carrier status were more likely to report an open communication pattern than girls who knew only that they were at-risk.
Indexed as
Identifiers
What OpenQuestion holds
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.