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Volumn 158 A, Issue 2, 2012, Pages 373-383

"Did you find that out in time?": New life trajectories of parents who choose to continue a pregnancy where a genetic disorder is diagnosed or likely

Author keywords

Attitudes; Continuing pregnancy; Disability; Genetic diagnosis; Parents; Prenatal diagnosis; Qualitative research; Trajectory

Indexed keywords

ADULT; AMNIOCENTESIS; ARTICLE; BONE DYSPLASIA; CHROMOSOME ABERRATION; CLINICAL ARTICLE; COPING BEHAVIOR; CYSTIC FIBROSIS; DOWN SYNDROME; EXPLORATORY RESEARCH; FEMALE; GENETIC DISORDER; HEALTH CARE PERSONNEL; HUMAN; INTERVIEW; KNOWLEDGE; MALE; MARKER CHROMOSOME; PARENTAL ATTITUDE; PARENTAL BEHAVIOR; PATIENT DECISION MAKING; PREGNANCY; PRENATAL DIAGNOSIS; PRENATAL SCREENING; PRIORITY JOURNAL; QUALITATIVE RESEARCH; SOCIAL ASPECT; SOCIAL SUPPORT; SPINAL MUSCULAR ATROPHY; THEMATIC ANALYSIS;

EID: 84856215822     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.34399     Document Type: Article
Times cited : (28)

References (55)
  • 1
    • 0035374389 scopus 로고    scopus 로고
    • An exploration of midwives' and obstetricians' knowledge of genetic screening in pregnancy and their perception of appropriate counseling'
    • Bramwell R, Carter D. 2001. An exploration of midwives' and obstetricians' knowledge of genetic screening in pregnancy and their perception of appropriate counseling'. Midwifery 17: 133-141.
    • (2001) Midwifery , vol.17 , pp. 133-141
    • Bramwell, R.1    Carter, D.2
  • 2
    • 33745018274 scopus 로고
    • Flashbulb memories
    • Brown R, Kulik J. 1977. Flashbulb memories. Cognition 5: 73-99.
    • (1977) Cognition , vol.5 , pp. 73-99
    • Brown, R.1    Kulik, J.2
  • 3
    • 0032964496 scopus 로고    scopus 로고
    • Male partners' role in Latinas' amniocentesis decisions
    • Browner CH, Preloran MH. 1999. Male partners' role in Latinas' amniocentesis decisions. J Genet Couns 8: 85-108.
    • (1999) J Genet Couns , vol.8 , pp. 85-108
    • Browner, C.H.1    Preloran, M.H.2
  • 4
    • 21544463420 scopus 로고    scopus 로고
    • Experiences of prenatal diagnosis of spina bifida or hydrocephalus in parents who decide to continue with their pregnancy
    • Chaplin J, Schweitzer R, Perkoulidis S. 2005. Experiences of prenatal diagnosis of spina bifida or hydrocephalus in parents who decide to continue with their pregnancy. J Genet Couns 14: 151-162.
    • (2005) J Genet Couns , vol.14 , pp. 151-162
    • Chaplin, J.1    Schweitzer, R.2    Perkoulidis, S.3
  • 6
    • 0034092696 scopus 로고    scopus 로고
    • Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities
    • Chen EA, Schiffman JF. 2000. Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities. J Genet Couns 9: 137-152.
    • (2000) J Genet Couns , vol.9 , pp. 137-152
    • Chen, E.A.1    Schiffman, J.F.2
  • 9
    • 46749123591 scopus 로고    scopus 로고
    • Attitudes toward the acceptability of reasons for pregnancy termination due to fetal abnormalities among prenatal care providers and consumers in Israel
    • Dery AM, Carmi R, Vardi IS. 2008. Attitudes toward the acceptability of reasons for pregnancy termination due to fetal abnormalities among prenatal care providers and consumers in Israel. Prenat Diagn 28: 518-524.
    • (2008) Prenat Diagn , vol.28 , pp. 518-524
    • Dery, A.M.1    Carmi, R.2    Vardi, I.S.3
  • 10
    • 84856221969 scopus 로고
    • The genome project. Origins and developments
    • Fischer P, Klose S, editors. Munich Germany: R. Piper GmbH & Co
    • Dulbecco R. 1995. The genome project. Origins and developments. In: Fischer P, Klose S, editors. The diagnostic challenge-The human genome. Vol. Munich Germany: R. Piper GmbH & Co.
    • (1995) The diagnostic challenge-The human genome. Vol
    • Dulbecco, R.1
  • 11
    • 0023617827 scopus 로고
    • Parental perceptions of the burden of genetic disease
    • Ekwo EE, Kim J, Gosselink CA. 1987. Parental perceptions of the burden of genetic disease. Am J Med Genet 28: 955-963.
    • (1987) Am J Med Genet , vol.28 , pp. 955-963
    • Ekwo, E.E.1    Kim, J.2    Gosselink, C.A.3
  • 12
    • 0037400995 scopus 로고    scopus 로고
    • Post-diagnostic abortion in Germany: Reproduction gone awry, again?
    • Erikson SL. 2003. Post-diagnostic abortion in Germany: Reproduction gone awry, again? Soc Sci Med 56: 1987-2001.
    • (2003) Soc Sci Med , vol.56 , pp. 1987-2001
    • Erikson, S.L.1
  • 13
    • 0033452444 scopus 로고    scopus 로고
    • Never again joy without sorrow: The effect on parents of a child with ataxia-telangiectasia
    • Fanos JH, Mackintosh MA. 1999. Never again joy without sorrow: The effect on parents of a child with ataxia-telangiectasia. Am J Med Genet 87: 413-419.
    • (1999) Am J Med Genet , vol.87 , pp. 413-419
    • Fanos, J.H.1    Mackintosh, M.A.2
  • 14
    • 67650255310 scopus 로고    scopus 로고
    • Is the non-respect of ethical principles by health professionals during first-trimester sonographic Down syndrome screening damaging to patient autonomy?
    • Favre R, Guige V, Weingertner A-S, Vayssière C, Kohler K, Nisand I, Hervé C, Moutel G. 2009. Is the non-respect of ethical principles by health professionals during first-trimester sonographic Down syndrome screening damaging to patient autonomy? Ultrasound Obstet Gynecol 34: 25-32.
    • (2009) Ultrasound Obstet Gynecol , vol.34 , pp. 25-32
    • Favre, R.1    Guige, V.2    Weingertner, A.-S.3    Vayssière, C.4    Kohler, K.5    Nisand, I.6    Hervé, C.7    Moutel, G.8
  • 15
    • 84937378857 scopus 로고    scopus 로고
    • Exploring resilience from a parent's perspective: A qualitative study of six resilient mothers of children with an intellectual disability
    • Gardner J, Harmon T. 2002. Exploring resilience from a parent's perspective: A qualitative study of six resilient mothers of children with an intellectual disability. Aust Soc Work 55: 60-68.
    • (2002) Aust Soc Work , vol.55 , pp. 60-68
    • Gardner, J.1    Harmon, T.2
  • 16
    • 0036733293 scopus 로고    scopus 로고
    • Ethical decision-making in prenatal diagnosis and termination of pregnancy: A qualitative survey among physicians and midwives
    • Garel M, Gosme-Seguret S, Kaminski M, Cuttini M. 2002. Ethical decision-making in prenatal diagnosis and termination of pregnancy: A qualitative survey among physicians and midwives. Prenat Diagn 22: 811-817.
    • (2002) Prenat Diagn , vol.22 , pp. 811-817
    • Garel, M.1    Gosme-Seguret, S.2    Kaminski, M.3    Cuttini, M.4
  • 18
    • 0141457239 scopus 로고    scopus 로고
    • Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature
    • Hill V, Sahhar M, Aitken M, Savarirayan R, Metcalfe S. 2003. Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature. Am J Med Genet Part A 122A: 100-107.
    • (2003) Am J Med Genet Part A , vol.122 A , pp. 100-107
    • Hill, V.1    Sahhar, M.2    Aitken, M.3    Savarirayan, R.4    Metcalfe, S.5
  • 19
    • 21544458035 scopus 로고    scopus 로고
    • A practical account of autonomy: Why genetic counseling is especially well suited to the facilitation of informed autonomous decision making
    • Hodgson J, Spriggs M. 2005. A practical account of autonomy: Why genetic counseling is especially well suited to the facilitation of informed autonomous decision making. J Genet Couns 14: 89-97.
    • (2005) J Genet Couns , vol.14 , pp. 89-97
    • Hodgson, J.1    Spriggs, M.2
  • 20
    • 0034021601 scopus 로고    scopus 로고
    • To use or not to use: Male partners' perspectives on decision making about prenatal diagnosis
    • Kenen R, Smith ACM, Watkins C, Zuber-Pittore C. 2000. To use or not to use: Male partners' perspectives on decision making about prenatal diagnosis. J Genet Couns 9: 33-45.
    • (2000) J Genet Couns , vol.9 , pp. 33-45
    • Kenen, R.1    Smith, A.C.M.2    Watkins, C.3    Zuber-Pittore, C.4
  • 25
    • 3543050191 scopus 로고    scopus 로고
    • Genetic counselors' experiences with paternal involvement in prenatal genetic counseling sessions: An exploratory investigation
    • Lafans RS, McCarthy Veach P, LeRoy BS. 2003. Genetic counselors' experiences with paternal involvement in prenatal genetic counseling sessions: An exploratory investigation. J Genet Couns 12: 219-241.
    • (2003) J Genet Couns , vol.12 , pp. 219-241
    • Lafans, R.S.1    McCarthy Veach, P.2    LeRoy, B.S.3
  • 26
    • 58749087879 scopus 로고    scopus 로고
    • Recasting hope: A process of adaptation following fetal anomaly diagnosis
    • Lalor JG, Begley CM, Galavan E. 2009. Recasting hope: A process of adaptation following fetal anomaly diagnosis. Soc Sci Med 68: 462-472.
    • (2009) Soc Sci Med , vol.68 , pp. 462-472
    • Lalor, J.G.1    Begley, C.M.2    Galavan, E.3
  • 27
    • 33847077233 scopus 로고    scopus 로고
    • Unexpected diagnosis of fetal abnormality: Women's encounters with caregivers
    • Lalor JG, Devane D, Begley CM. 2007. Unexpected diagnosis of fetal abnormality: Women's encounters with caregivers. Birth 34: 80-88.
    • (2007) Birth , vol.34 , pp. 80-88
    • Lalor, J.G.1    Devane, D.2    Begley, C.M.3
  • 28
    • 0037217078 scopus 로고    scopus 로고
    • Perceptions of deservedness of social aid as a function of prenatal diagnostic testing
    • Lawson KL. 2003. Perceptions of deservedness of social aid as a function of prenatal diagnostic testing. J Appl Psychol 33: 76-90.
    • (2003) J Appl Psychol , vol.33 , pp. 76-90
    • Lawson, K.L.1
  • 29
    • 28044464003 scopus 로고    scopus 로고
    • The parents' journey: Continuing a pregnancy after a diagnosis of Patau's syndrome
    • Locock L, Crawford J. 2005. The parents' journey: Continuing a pregnancy after a diagnosis of Patau's syndrome. Br Med J 331: 1186-1189.
    • (2005) Br Med J , vol.331 , pp. 1186-1189
    • Locock, L.1    Crawford, J.2
  • 30
    • 32044459959 scopus 로고    scopus 로고
    • 'Just a bystander'? Men's place in the process of fetal screening and diagnosis
    • Locock L, Alexander J. 2006. 'Just a bystander'? Men's place in the process of fetal screening and diagnosis. Soc Sci Med 62: 1349-1359.
    • (2006) Soc Sci Med , vol.62 , pp. 1349-1359
    • Locock, L.1    Alexander, J.2
  • 31
    • 0032883373 scopus 로고    scopus 로고
    • Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review
    • Mansfield C, Hopfer S, Marteau TM. 1999. Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review. Prenat Diagn 19: 808-812.
    • (1999) Prenat Diagn , vol.19 , pp. 808-812
    • Mansfield, C.1    Hopfer, S.2    Marteau, T.M.3
  • 32
    • 0027988079 scopus 로고
    • Counseling following diagnosis of fetal abnormality: The differing approaches of obstetricians, clinical geneticists, and genetic nurses
    • Marteau TM, Drake H, Bobrow M. 1994. Counseling following diagnosis of fetal abnormality: The differing approaches of obstetricians, clinical geneticists, and genetic nurses. J Med Genet 31: 864-867.
    • (1994) J Med Genet , vol.31 , pp. 864-867
    • Marteau, T.M.1    Drake, H.2    Bobrow, M.3
  • 33
    • 0028899903 scopus 로고
    • Attributions for disability: The influence of genetic screening
    • Marteau TM, Drake H. 1995. Attributions for disability: The influence of genetic screening. Soc Sci Med 40: 1127-1132.
    • (1995) Soc Sci Med , vol.40 , pp. 1127-1132
    • Marteau, T.M.1    Drake, H.2
  • 34
    • 34247502273 scopus 로고    scopus 로고
    • Pregnancy interrupted: Loss of a desired pregnancy after diagnosis of fetal anomaly
    • McCoyd JLM. 2007. Pregnancy interrupted: Loss of a desired pregnancy after diagnosis of fetal anomaly. J Psychosom Obstet Gynecol 28: 37-48.
    • (2007) J Psychosom Obstet Gynecol , vol.28 , pp. 37-48
    • McCoyd, J.L.M.1
  • 35
    • 0032231301 scopus 로고    scopus 로고
    • Attitudes of deaf adults toward genetic testing for hereditary deafness
    • Middleton A, Hewison J, Mueller RF. 1998. Attitudes of deaf adults toward genetic testing for hereditary deafness. Am J Hum Genet 63: 1175-1180.
    • (1998) Am J Hum Genet , vol.63 , pp. 1175-1180
    • Middleton, A.1    Hewison, J.2    Mueller, R.F.3
  • 37
    • 48449101861 scopus 로고    scopus 로고
    • A qualitative description of receiving a diagnosis of clefting in the prenatal or postnatal period
    • Nusbaum R, Grub RE, Losee JE, Weidman C, Ford MD, Marazita ML. 2008. A qualitative description of receiving a diagnosis of clefting in the prenatal or postnatal period. J Genet Couns 17: 336-350.
    • (2008) J Genet Couns , vol.17 , pp. 336-350
    • Nusbaum, R.1    Grub, R.E.2    Losee, J.E.3    Weidman, C.4    Ford, M.D.5    Marazita, M.L.6
  • 38
    • 0037222951 scopus 로고    scopus 로고
    • Disability rights critique of prenatal genetic testing: Reflections and recommendations
    • Parens E, Asch A. 2003. Disability rights critique of prenatal genetic testing: Reflections and recommendations. Ment Retard Dev Disabil Res Rev 9: 40-47.
    • (2003) Ment Retard Dev Disabil Res Rev , vol.9 , pp. 40-47
    • Parens, E.1    Asch, A.2
  • 39
    • 0031740409 scopus 로고    scopus 로고
    • Continuation of pregnancy following the diagnosis of a fetal sex chromosome abnormality: A study of parents' counseling needs and experiences
    • Petrucelli N, Walker M, Schorry E. 1998. Continuation of pregnancy following the diagnosis of a fetal sex chromosome abnormality: A study of parents' counseling needs and experiences. J Genet Couns 7: 401-415.
    • (1998) J Genet Couns , vol.7 , pp. 401-415
    • Petrucelli, N.1    Walker, M.2    Schorry, E.3
  • 40
    • 0021813585 scopus 로고
    • Parent interview findings regarding the impact of cystic fibrosis on families
    • Phillips S, Bohannon WE, Gayton WF, Friedman SB. 1985. Parent interview findings regarding the impact of cystic fibrosis on families. J Dev Behav Pediatr 6: 122-127.
    • (1985) J Dev Behav Pediatr , vol.6 , pp. 122-127
    • Phillips, S.1    Bohannon, W.E.2    Gayton, W.F.3    Friedman, S.B.4
  • 41
    • 33947390489 scopus 로고    scopus 로고
    • Parental decisions to abort or continue a pregnancy following prenatal diagnosis of chromosomal abnormalities in a setting where termination of pregnancy is not legally available
    • Quadrelli R, Quadrelli A, Mechoso B, Laufer M, Jaumandreu C, Vaglio A. 2007. Parental decisions to abort or continue a pregnancy following prenatal diagnosis of chromosomal abnormalities in a setting where termination of pregnancy is not legally available. Prenat Diagn 27: 228-232.
    • (2007) Prenat Diagn , vol.27 , pp. 228-232
    • Quadrelli, R.1    Quadrelli, A.2    Mechoso, B.3    Laufer, M.4    Jaumandreu, C.5    Vaglio, A.6
  • 42
    • 0027932424 scopus 로고
    • First diagnosis of severe mental and physical disability: A study of doctor-parent communication
    • Quine L, Rutter DR. 1994. First diagnosis of severe mental and physical disability: A study of doctor-parent communication. J Child Psychol Psychiatry 35: 1273-1287.
    • (1994) J Child Psychol Psychiatry , vol.35 , pp. 1273-1287
    • Quine, L.1    Rutter, D.R.2
  • 43
    • 33644699330 scopus 로고    scopus 로고
    • The quest for the perfect baby: Why do Israeli women seek prenatal genetic testing?
    • Remennick L. 2006. The quest for the perfect baby: Why do Israeli women seek prenatal genetic testing? Sociol Health Illness 28: 21-53.
    • (2006) Sociol Health Illness , vol.28 , pp. 21-53
    • Remennick, L.1
  • 45
    • 0030056911 scopus 로고    scopus 로고
    • Healing fictions": Stories of choosing in the aftermath of the detection of fetal anomalies
    • Sandelowski M, Corson Jones L. 1996. "Healing fictions": Stories of choosing in the aftermath of the detection of fetal anomalies. Soc Sci Med 42: 353-361.
    • (1996) Soc Sci Med , vol.42 , pp. 353-361
    • Sandelowski, M.1    Corson Jones, L.2
  • 46
    • 84856226329 scopus 로고    scopus 로고
    • Arguing about genetics and disability
    • Shakespeare T. 2000. Arguing about genetics and disability. Interaction 13: 11-14.
    • (2000) Interaction , vol.13 , pp. 11-14
    • Shakespeare, T.1
  • 47
    • 4544238927 scopus 로고    scopus 로고
    • Prenatal diagnosis, pregnancy terminations and prevalence of Down syndrome in Atlantla
    • Siffel C, Correa A, Cragan J, Alverson CJ. 2004. Prenatal diagnosis, pregnancy terminations and prevalence of Down syndrome in Atlantla. Birth Defects Res (Part A) 70: 565-571.
    • (2004) Birth Defects Res (Part A) , vol.70 , pp. 565-571
    • Siffel, C.1    Correa, A.2    Cragan, J.3    Alverson, C.J.4
  • 48
    • 14644444221 scopus 로고    scopus 로고
    • Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers
    • Skotko BG. 2005. Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers. Am J Obstet Gynecol 192: 670-677.
    • (2005) Am J Obstet Gynecol , vol.192 , pp. 670-677
    • Skotko, B.G.1
  • 49
    • 36248973566 scopus 로고    scopus 로고
    • Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory
    • Starks H, Brown Trinidad S. 2007. Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res 17: 1372-1380.
    • (2007) Qual Health Res , vol.17 , pp. 1372-1380
    • Starks, H.1    Brown Trinidad, S.2
  • 50
    • 0036085178 scopus 로고    scopus 로고
    • Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss
    • Stern SJ, Arnos KS, Murrelle L, Welch KO, Nance WE, Pandya A. 2002. Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss. J Med Genet 39: 449-453.
    • (2002) J Med Genet , vol.39 , pp. 449-453
    • Stern, S.J.1    Arnos, K.S.2    Murrelle, L.3    Welch, K.O.4    Nance, W.E.5    Pandya, A.6
  • 52
    • 0004098272 scopus 로고    scopus 로고
    • 2nd edition. New York: The Guilford Press.
    • Walsh F. 2006. Strengthening family resilience, 2nd edition. New York: The Guilford Press. p 4-8.
    • (2006) Strengthening family resilience , pp. 4-8
    • Walsh, F.1
  • 54
    • 56049126818 scopus 로고    scopus 로고
    • Making teams work in conducting grounded theory
    • Bryant A, Charmaz K, editors. Los Angeles: Sage.
    • Wiener C. 2007. Making teams work in conducting grounded theory. In: Bryant A, Charmaz K, editors. The Sage handbook of grounded theory. Los Angeles: Sage. pp 293-310.
    • (2007) The Sage handbook of grounded theory , pp. 293-310
    • Wiener, C.1
  • 55
    • 80051990294 scopus 로고    scopus 로고
    • Prenatal and postnatal diagnosis of infant disability: Breaking the news to mothers
    • Wright JA. 2008. Prenatal and postnatal diagnosis of infant disability: Breaking the news to mothers. J Perinat Educ 17: 27-32.
    • (2008) J Perinat Educ , vol.17 , pp. 27-32
    • Wright, J.A.1


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