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Items: 14

1.

Spirituality, Illness Unpredictability, and Math Anxiety Effects on Negative Affect and Affect-Management Coping for Individuals Diagnosed with Alpha-1 Antitrypsin Deficiency.

Worthington AK, Parrott RL, Smith RA.

Health Commun. 2017 Jan 6:1-9. doi: 10.1080/10410236.2016.1266576. [Epub ahead of print]

PMID:
28059573
2.

Known unknowns: buildingĀ an ethics of uncertainty into genomic medicine.

Newson AJ, Leonard SJ, Hall A, Gaff CL.

BMC Med Genomics. 2016 Sep 1;9(1):57. doi: 10.1186/s12920-016-0219-0.

3.

Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases.

Krabbenborg L, Vissers LE, Schieving J, Kleefstra T, Kamsteeg EJ, Veltman JA, Willemsen MA, Van der Burg S.

J Genet Couns. 2016 Dec;25(6):1207-1214. Epub 2016 Apr 20.

4.

Variants of unknown significance on chromosomal microarray analysis: parental perspectives.

Jez S, Martin M, South S, Vanzo R, Rothwell E.

J Community Genet. 2015 Oct;6(4):343-9. doi: 10.1007/s12687-015-0218-4. Epub 2015 Feb 10.

5.

A qualitative exploration of mothers' and fathers' experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis.

Bourke E, Snow P, Herlihy A, Amor D, Metcalfe S.

Eur J Hum Genet. 2014 Jan;22(1):18-24. doi: 10.1038/ejhg.2013.102. Epub 2013 May 22.

6.

"Nothing is absolute in life": understanding uncertainty in the context of psychiatric genetic counseling from the perspective of those with serious mental illness.

Hippman C, Lohn Z, Ringrose A, Inglis A, Cheek J, Austin JC.

J Genet Couns. 2013 Oct;22(5):625-32. doi: 10.1007/s10897-013-9594-2. Epub 2013 Apr 21.

7.

"What does it mean?": uncertainties in understanding results of chromosomal microarray testing.

Reiff M, Bernhardt BA, Mulchandani S, Soucier D, Cornell D, Pyeritz RE, Spinner NB.

Genet Med. 2012 Feb;14(2):250-8. doi: 10.1038/gim.2011.52. Epub 2012 Jan 5.

8.

Caregiver and adult patient perspectives on the importance of a diagnosis of 22q11.2 deletion syndrome.

Costain G, Chow EW, Ray PN, Bassett AS.

J Intellect Disabil Res. 2012 Jun;56(6):641-51. doi: 10.1111/j.1365-2788.2011.01510.x. Epub 2011 Dec 6.

9.

The role of hope in adaptation to uncertainty: the experience of caregivers of children with Down syndrome.

Truitt M, Biesecker B, Capone G, Bailey T, Erby L.

Patient Educ Couns. 2012 May;87(2):233-8. doi: 10.1016/j.pec.2011.08.015. Epub 2011 Sep 21.

10.

What's at stake? Genetic information from the perspective of people with epilepsy and their family members.

Shostak S, Zarhin D, Ottman R.

Soc Sci Med. 2011 Sep;73(5):645-54. doi: 10.1016/j.socscimed.2011.06.043. Epub 2011 Jul 23.

11.

Narrating disability, narrating religious practice: reconciliation and fragile X syndrome.

Michie M, Skinner D.

Intellect Dev Disabil. 2010 Apr;48(2):99-111. doi: 10.1352/1934-9556-48.2.99.

12.

When the cystic fibrosis label does not fit: a modified uncertainty theory.

Tluczek A, Chevalier McKechnie A, Lynam PA.

Qual Health Res. 2010 Feb;20(2):209-23. doi: 10.1177/1049732309356285.

13.

Policy considerations in designing a fragile X population screening program.

Ross LF, Acharya K.

Genet Med. 2008 Oct;10(10):711-3. doi: 10.1097/GIM.0b013e3181889457. No abstract available.

14.

Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening.

Bailey DB Jr, Armstrong FD, Kemper AR, Skinner D, Warren SF.

J Pediatr Psychol. 2009 Jul;34(6):648-61. doi: 10.1093/jpepsy/jsn032. Epub 2008 Mar 30.

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