ArticleJournal of pediatric nursing2009
Information management in families who have a child with a genetic condition.
Article in Journal of pediatric nursing, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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
19 citing papers in PubMed.
- Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait.Computers, informatics, nursing : CIN · 2022Trial
- Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.Journal of genetic counseling · 2016Trial
- Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.Nursing researchTrial
- Finding acceptance: How adolescents and young adults with Klinefelter Syndrome navigate identity, disclosure, and support.Journal of genetic counseling · 2025Article
- Verbesserung der interdisziplinären Zusammenarbeit zwischen den Fachgebieten Kinder- und Jugendpsychiatrie, und -psychotherapie sowie Humangenetik - Anregungen aus kinder- und jugendpsychiatrischer Sicht.Medizinische Genetik : Mitteilungsblatt des Berufsverbandes Medizinische Genetik e.V · 2025Article
- Parent perspectives on disclosing a pediatric neurofibromatosis type 1 diagnosis.Journal of genetic counseling · 2023Article
- CHOICES for sickle cell reproductive health: A protocol of a randomized preconception intervention model for a single gene disorder.PloS one · 2023Article
- Misdiagnosis of trisomy 13 and trisomy 18 is more common than anticipated.American journal of medical genetics. Part A · 2022Article
- Characteristics associated with the perceived likelihood to become parents among young adults with sickle cell disease or sickle cell trait in the USA.Journal of genetic counseling · 2022Article
- Genomic Health Literacy Interventions in Pediatrics: Scoping Review.Journal of medical Internet research · 2021Article
- Sickle Cell Education: A Survey of Antenatal Healthcare Givers.The American journal of tropical medicine and hygiene · 2019Article
- Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families.Journal of genetic counseling · 2017Article
- Genetic Information-Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes.Journal of genetic counseling · 2015Article
- "How should I tell my child?" Disclosing the diagnosis of sex chromosome aneuploidies.Journal of genetic counseling · 2015Article
- Evaluation of the SCKnowIQ tool and reproductive CHOICES intervention among young adults with sickle cell disease or sickle cell trait.Clinical nursing research · 2014Article
- Assessment of parental disclosure of a 22q11.2 deletion syndrome diagnosis and implications for clinicians.Journal of genetic counseling · 2012Article
- Sickle cell disease: an opportunity for palliative care across the life span.The Nursing clinics of North America · 2010Article
- Health care professionals' views of sharing information with families who have a child with a genetic condition.Journal of genetic counseling · 2010Article
- Parental perceptions of the outcome and meaning of normalization.Research in nursing & health · 2010Article
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.
Funding
Abstract
In families with children with genetic conditions, information management may influence how parents view their child; their reproductive decision making; and how, when, what, and why they communicate about the condition to other family members. The purpose of this study was to identify unique patterns of information management and to explore the relationship between these patterns and individual and family characteristics and functioning. The sample was composed of 142 parents in 86 families in which a child had a single-gene condition. Four distinct information management patterns were identified that varied in the parents' understanding of the genetic aspects of the condition: accurate understanding-open (35%, n = 30), accurate understanding-selective (24%, n = 21), discrepant understanding (15%, n = 13), and confused understanding (26%, n = 22). In two patterns, accurate understanding-open and accurate understanding-selective (59%), parents had an accurate understanding of the genetic aspects of the condition, and the patterns were differentiated from one another by parents' views about sharing information. In the discrepant understanding pattern, which included only two-parent families, one parent had an accurate understanding and one parent a confused understanding of the genetic aspects of the condition. In the confused understanding pattern, parents had an inaccurate understanding of one or more of the genetic aspects of the condition. Statistically significant differences were found between information management patterns and parents' education, family annual income, and health insurance coverage. These information management patterns reflect how parents access, interpret, and convey genetic information and can influence the effectiveness of health care providers' interactions with these families.
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Registered trials
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