Parents' perceptions of genetics services for congenital heart disease: The role of demographic, clinical, and psychological factors in determining service attendance

Genetics in Medicine

Volumn 16, Issue 6, 2014, Pages 460-468

  Kasparian, Nadine A ^a,c   Fidock, Blake ^a   Sholler, Gary F ^b,c   Camphausen, Christoph ^d   Murphy, David N ^d   Cooper, Stephen G ^b,d   Kaul, Ritik ^a   Jones, Owen ^d   Winlaw, David S ^b,c   Kirk, Edwin P E ^d  

^a UNIVERSITY OF NEW SOUTH WALES   (Australia)

^b CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^c UNIVERSITY OF SYDNEY   (Australia)

^d SYDNEY CHILDREN'S HOSPITAL   (Australia)

Author keywords

causal attributions; congenital heart disease; genetic counseling; genetics services; health services; psychological stress

Indexed keywords

ADULT; ANXIETY; ARTICLE; AUSTRALIA; CAUSAL ATTRIBUTION; CLINICAL GENETICS; CONGENITAL HEART DISEASE; DEPRESSION; DEPRESSION ANXIETY STRESS SCALE; FEMALE; GENETIC SERVICE; HEREDITY; HUMAN; MAJOR CLINICAL STUDY; MALE; PARENTAL ATTITUDE; PRENATAL DIAGNOSIS; PSYCHOLOGICAL ASPECT; STRESS; ATTITUDE TO HEALTH; CHILD HEALTH CARE; CHILD WELFARE; GENETICS; HEALTH CARE SURVEY; HEART DEFECTS, CONGENITAL; MIDDLE AGED; PARENT; PATIENT PARTICIPATION; PERCEPTION; PREGNANCY; PRESCHOOL CHILD; PSYCHOLOGY; RISK; SOCIOECONOMICS;

ADULT; ATTITUDE TO HEALTH; CHILD HEALTH SERVICES; CHILD WELFARE; CHILD, PRESCHOOL; FEMALE; GENETIC SERVICES; HEALTH CARE SURVEYS; HEART DEFECTS, CONGENITAL; HUMANS; MALE; MIDDLE AGED; ODDS RATIO; PARENTS; PATIENT PARTICIPATION; PERCEPTION; PREGNANCY; SOCIOECONOMIC FACTORS;

EID: 84902077315     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2013.169     Document Type: Article

References (38)

1. Begg S, Vos T, Barker B, Stevenson C, Stanley L, Lopez A. The Burden of Diseaseand Injury in Australia 2003. AIHM: Canberra, 2007.
2. Kasparian N. When hearts and minds meet: a psychological perspective on fetalcardiac diagnosis. Infant Mental Health J 2010;32:104.
3. Majnemer A, Limperopoulos C, Shevell M, Rohlicek C, Rosenblatt B,Tchervenkov C. Health and well-being of children with congenital cardiacmalformations, and their families, following open-heart surgery. Cardiol Young2006;16:157-164.
4. Sohr-Preston SL, Scaramella LV. Implications of timing of maternal depressivesymptoms for early cognitive and language development. Clin Child FamPsychol Rev 2006;9:65-83.
5. Yagi H, Furutani Y, Hamada H, et al. Role of TBX1 in human del22q11.2syndrome. Lancet 2003;362:1366-1373.
6. Kirk EP, Sunde M, Costa MW, et al. Mutations in cardiac T-box factor gene TBX20are associated with diverse cardiac pathologies, including defects of septationand valvulogenesis and cardiomyopathy. Am J Hum Genet 2007;81:280-291.
7. Pierpont ME, Basson CT, Benson DW Jr, et al.; American Heart AssociationCongenital Cardiac Defects Committee, Council on Cardiovascular Disease inthe Young. Genetic basis for congenital heart defects: current knowledge: ascientific statement from the American Heart Association Congenital CardiacDefects Committee, Council on Cardiovascular Disease in the Young: endorsedby the American Academy of Pediatrics. Circulation 2007;115:3015-3038.
8. Burn J, Goodship J. Congenital heart disease. In: Rimoin DL, Connor JM,Pyeritz RE, Korf BR (eds). Emery and Rimoin's Principles and Practice of MedicalGenetics, 4th edn. Churchill Livingstone: London, 2002:1239-1326.
9. Williamson EM. A family study of atrial septal defect. J Med Genet 1969;6:255-265.
10. Burn J, Brennan P, Little J, et al. Recurrence risks in offspring of adults with majorheart defects: results from first cohort of British collaborative study. Lancet1998;351:311-316.
11. McBride KL, Pignatelli R, Lewin M, et al. Inheritance analysis of congenital leftventricular outflow tract obstruction malformations: segregation, multiplexrelative risk, and heritability. Am J Med Genet A 2005;134A:180-186.
12. Nora JJ, Nora AH. Maternal transmission of congenital heart diseases: newrecurrence risk figures and the questions of cytoplasmic inheritance andvulnerability to teratogens. Am J Cardiol 1987;59:459-463.
13. Glynn A, Collins V, Halliday J. Utilization of genetic counseling after diagnosis ofa birth defect-trends over time and variables associated with utilization. GenetMed 2009;11:287-293.
14. Glynn A, Saya S, Halliday J. Use and non-use of genetic counseling afterdiagnosis of a birth defect. Am J Med Genet A 2012;158A:559-566.
15. Sikkens EH, de Walle HE, Reefhuis J, van Tintelen JP, van Essen AJ. Referral forgenetic counseling after the birth of a child with a congenital anomaly in theNorthern Netherlands. Am J Med Genet 2002;112:133-137.
16. Forrester MB, Merz RD. Genetic counseling utilization by families withoffspring affected by birth defects, Hawaii, 1986-2003. Am J Med Genet2007;143A:1045-1052.
17. Shiloh S, Ben-Sinai R, Keinan G. Effects of controllability, predictability, andinformation-seeking style on interest in predictive genetic testing. Pers SocPsychol Bull 1999;25:1187-1195.
18. Australian Bureau of Statistics. Survey of Income and Housing. 2007-08 http://www.abs.gov.au/ausstats/abs@nsf/1020492cfcd63696ca2568a1002477b5/ 5f4bb49c975c64c9ca256d6b00827adb!OpenDocument. Accessed 12 February2010.
19. Jenkins KJ, Gauvreau K, Newburger JW, Spray TL, Moller JH, Iezzoni LI.Consensus-based method for risk adjustment for surgery for congenital heartdisease. J Thorac Cardiovasc Surg 2002;123:110-118.
20. Crawford J, Cayley C, Lovibond PF, Wilson PH, Hartley C. Percentile norms andaccompanying interval estimates from an Australian general adult populationsample for self-report mood scales (BAI, BDI, CRSD, CES-D, DASS, DASS-21,STAI-X, STAI-Y, SRDS, and SRAS). Aust Psychol 2011;46:3-14.
21. Lovibond PF, Lovibond SH. The structure of negative emotional states:comparison of the Depression Anxiety Stress Scales (DASS) with the BeckDepression and Anxiety Inventories. Behav Res Ther 1995;33:335-343.
22. Weiss D, Marmar C. The impact of event scale-revised. Assessing PsychologicalTrauma and PTSD. 1997:399-411.
23. Boer KR, van Ruler O, van Emmerik AA, et al.; Dutch Peritonitis Study Group.Factors associated with posttraumatic stress symptoms in a prospectivecohort of patients after abdominal sepsis: a nomogram. Intensive Care Med2008;34:664-674.
24. Creamer M, Bell R, Failla S. Psychometric properties of the Impact of Event Scale-Revised. Behav Res Ther 2003;41:1489-1496.
25. Miller SM. Monitoring and blunting: validation of a questionnaire to assessstyles of information seeking under threat. J Pers Soc Psychol 1987;52:345-353.
26. Miller SM. Monitoring and blunting of threatening information: cognitiveinterference and facilitation in the coping process. In: Sarason I, Pierce G,Sarason B (eds). Cognitive Interference: Theories, Methods, and Findings.Lawrence Erlbaum Associates: Hillsdale, NJ, England, 1996:175-190.
27. Howell DC. Statistical Methods for Psychology. Duxbury Press: Belmont, CA,1987.
28. Peduzzi P, Concato J, Kemper E, Holford TR, Feinstein AR. A simulation study ofthe number of events per variable in logistic regression analysis. J Clin Epidemiol1996;49:1373-1379.
29. Collins V, Halliday J, Kahler S, Williamson R. Parents' experiences with geneticcounseling after the birth of a baby with a genetic disorder: an exploratorystudy. J Genet Couns 2001;10:53-72.
30. Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ. Genetic testing formelanoma risk: a prospective cohort study of uptake and outcomes amongAustralian families. Genet Med 2009;11:265-278.
31. Sholler GF, Kasparian NA, Pye VE, Cole AD, Winlaw DS. Fetal and post-nataldiagnosis of major congenital heart disease: implications for medical andpsychological care in the current era. J Paediatr Child Health 2011;47:717-722.
32. Sivarajan V, Penny DJ, Filan P, Brizard C, Shekerdemian LS. Impact of antenataldiagnosis of hypoplastic left heart syndrome on the clinical presentationand surgical outcomes: the Australian experience. J Paediatr Child Health2009;45:112-117.
33. Blyth M, Howe D, Gnanapragasam J, Wellesley D. The hidden mortality oftransposition of the great arteries and survival advantage provided by prenataldiagnosis. BJOG 2008;115:1096-1100.
34. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety Stress Scales.Psychology Foundation: Sydney, 1995.
35. Edhborg M, Seimyr L, Lundh W, Widström AM. Fussy child-difficult parenthood?Comparisons between families with a 'depressed' mother and non-depressedmother 2 months postpartum. J Reprod Infant Psychol 2000;18:225-238.
36. Marteau T, Senior V. Illness representations after the human genome project:the perceived role of genes in causing illness. In: Petrie K, Weinman J (eds).Perceptions of Illness and Treatment: Current Psychological Research andImplications. Ilarwood Academic Press: Amsterdam, 1997:241-264.
37. Kelley H. Causal schemata and the attribution process. In: Jones E, Kanouse D,Kelley H, Nisbett R, Valins S, Weiner B (eds). Attribution: Perceiving the Causesof Behaviour. General Learing Press: Morristown, NJ, 1971.
38. Senior V, Marteau TM, Weinman J. Impact of genetic testing on causal modelsof heart disease and arthritis: an analogue study. Psychol Health 2000;14:1077-1088.