메뉴 건너뛰기




Volumn 18, Issue 5, 2014, Pages 476-492

Experiential knowledge of disability, impairment and illness: The reproductive decisions of families genetically at risk

Author keywords

bioethics; chronic illness and disability; experiential knowledge; genetics; spinal muscular atrophy

Indexed keywords

ATTITUDE TO HEALTH; DECISION MAKING; FEMALE; GENETIC PREDISPOSITION; GENETICS; GREAT BRITAIN; HUMAN; INTERVIEW; MALE; PSYCHOLOGY; REPRODUCTIVE BEHAVIOR; RISK FACTOR; SPINAL MUSCULAR ATROPHY;

EID: 84905177030     PISSN: 13634593     EISSN: 14617196     Source Type: Journal    
DOI: 10.1177/1363459313507588     Document Type: Article
Times cited : (12)

References (53)
  • 1
    • 0001815110 scopus 로고    scopus 로고
    • Lock MKaufert P, ed. Cambridge: Cambridge University Press
    • Abel K,Browner CPragmatic Women and Body Politics. Lock MKaufert P, ed. Cambridge: Cambridge University Press; 1998:310-326.
    • (1998) Pragmatic Women and Body Politics , pp. 310-326
    • Abel, K.1    Browner, C.2
  • 5
    • 78650169455 scopus 로고    scopus 로고
    • Accessing the field: Disability and the research process
    • Brown L,Boardman F.Accessing the field: Disability and the research process.Social Science & Medicine. 2011;72 (1): 23-30.
    • (2011) Social Science & Medicine , vol.72 , Issue.1 , pp. 23-30
    • Brown, L.1    Boardman, F.2
  • 7
    • 33644923866 scopus 로고    scopus 로고
    • Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home
    • Carnevale FA,Alexander E,Davis M, et al.Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home.Pediatrics. 2006;117 (1): e48-e60.
    • (2006) Pediatrics , vol.117 , Issue.1
    • Carnevale, F.A.1    Alexander, E.2    Davis, M.3
  • 8
    • 0033407743 scopus 로고    scopus 로고
    • Differences, conflations and foundations: The limits to 'accurate' theoretical representation of disabled people's experience
    • Corker M.Differences, conflations and foundations: The limits to 'accurate' theoretical representation of disabled people's experience.Disability & Society. 1999;14 (5): 627-642.
    • (1999) Disability & Society , vol.14 , Issue.5 , pp. 627-642
    • Corker, M.1
  • 10
    • 22644439208 scopus 로고    scopus 로고
    • Physical complaints in ageing persons with spinal muscular atrophy
    • De Groot I,De Witte L.Physical complaints in ageing persons with spinal muscular atrophy.Journal of Rehabilitation Medicine. 2005;37:258-262.
    • (2005) Journal of Rehabilitation Medicine , vol.37 , pp. 258-262
    • de Groot, I.1    de Witte, L.2
  • 11
    • 0035998805 scopus 로고    scopus 로고
    • Private tragedy in social context? Reflections on disability, illness and suffering
    • De Wolfe P.Private tragedy in social context? Reflections on disability, illness and suffering.Disability & Society. 2002;17 (3): 255-267.
    • (2002) Disability & Society , vol.17 , Issue.3 , pp. 255-267
    • de Wolfe, P.1
  • 12
    • 21344461203 scopus 로고    scopus 로고
    • Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease
    • Downing C.Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease.Journal of Genetic Counseling. 2005;14 (3): 219-234.
    • (2005) Journal of Genetic Counseling , vol.14 , Issue.3 , pp. 219-234
    • Downing, C.1
  • 13
    • 0031663165 scopus 로고    scopus 로고
    • Pre-implantation genetic diagnosis of spinal muscular atrophy
    • Dreesen J,Bras M,de Die-Smulders C, et al.Pre-implantation genetic diagnosis of spinal muscular atrophy.Molecular Human Reproduction. 1998;4 (9): 881-885.
    • (1998) Molecular Human Reproduction , vol.4 , Issue.9 , pp. 881-885
    • Dreesen, J.1    Bras, M.2    de Die-Smulders, C.3
  • 14
    • 0026271910 scopus 로고
    • Editorial: Chaos in the classification of the spinal muscular atrophies of childhood
    • Dubowitz V.Editorial: Chaos in the classification of the spinal muscular atrophies of childhood.Neuromuscular Disorders. 1991;1 (2): 77-80.
    • (1991) Neuromuscular Disorders , vol.1 , Issue.2 , pp. 77-80
    • Dubowitz, V.1
  • 15
    • 0002428443 scopus 로고
    • Disorders of the lower motor neuron: The spinal muscular atrophies
    • In: DubowitzV (ed.). 2nd ed.London: NB Saunders Company Ltd.Dubowitz V, ed. London: NB Saunders Company Ltd
    • Dubowitz VMuscle Disorders in Childhood. 1995) Disorders of the lower motor neuron: The spinal muscular atrophies. In: DubowitzV (ed.) Muscle Disorders in Childhood. 2nd ed.London: NB Saunders Company Ltd, pp. 325-367.Dubowitz V, ed. London: NB Saunders Company Ltd; 1995:325-367.
    • (1995) Muscle Disorders in Childhood , pp. 325-367
    • Dubowitz, V.1
  • 16
    • 58849087509 scopus 로고    scopus 로고
    • Ramblings in the history of spinal muscular atrophy
    • Dubowitz V.Ramblings in the history of spinal muscular atrophy.Neuromuscular Disorders. 2008;19 (1): 69-73.
    • (2008) Neuromuscular Disorders , vol.19 , Issue.1 , pp. 69-73
    • Dubowitz, V.1
  • 17
    • 41449084590 scopus 로고    scopus 로고
    • The influence of experiential knowledge on prenatal screening and testing decisions
    • Etchegary H,Potter B,Howley H, et al.The influence of experiential knowledge on prenatal screening and testing decisions.Genetic Testing. 2008;12 (1): 115-124.
    • (2008) Genetic Testing , vol.12 , Issue.1 , pp. 115-124
    • Etchegary, H.1    Potter, B.2    Howley, H.3
  • 18
    • 0025342498 scopus 로고
    • A child with Cystic Fibrosis: II. Subsequent family planning decisions, reproduction and use of prenatal diagnosis
    • Evers-Kiebooms G,Denayer L,Van Den Berghe H.A child with Cystic Fibrosis: II. Subsequent family planning decisions, reproduction and use of prenatal diagnosis.Clinical Genetics. 1990;37:207-215.
    • (1990) Clinical Genetics , vol.37 , pp. 207-215
    • Evers-Kiebooms, G.1    Denayer, L.2    van Den Berghe, H.3
  • 19
    • 84861432127 scopus 로고    scopus 로고
    • Imagined futures: How experiential knowledge of disability affects parents decision making about fetal abnormality
    • France E,Locock L,Hunt K, et al.Imagined futures: How experiential knowledge of disability affects parents decision making about fetal abnormality.Health Expectations. 2011;15 (2): 139-156.
    • (2011) Health Expectations , vol.15 , Issue.2 , pp. 139-156
    • France, E.1    Locock, L.2    Hunt, K.3
  • 22
    • 37249053409 scopus 로고    scopus 로고
    • The impact of ethical beliefs on decisions about prenatal screening tests: Searching for justification
    • García E,Timmermans D,Van Leeuwen E.The impact of ethical beliefs on decisions about prenatal screening tests: Searching for justification.Social Science & Medicine. 2008;66:753-764.
    • (2008) Social Science & Medicine , vol.66 , pp. 753-764
    • García, E.1    Timmermans, D.2    van Leeuwen, E.3
  • 27
    • 0031503164 scopus 로고    scopus 로고
    • The social model and the disappearing body: Towards a sociology of impairment
    • Hughes B,Paterson K.The social model and the disappearing body: Towards a sociology of impairment.Disability & Society. 1997;12 (3): 325-340.
    • (1997) Disability & Society , vol.12 , Issue.3 , pp. 325-340
    • Hughes, B.1    Paterson, K.2
  • 28
    • 84905174898 scopus 로고    scopus 로고
    • Jennifer Trust for Spinal Muscular Atrophy (JTSMA) Available at
    • Jennifer Trust for Spinal Muscular Atrophy (JTSMA) (2012) Available at: http://www.jtsma.org.uk/accessed 01/05/13.
    • (2012)
  • 29
    • 0031525244 scopus 로고    scopus 로고
    • Disabled women and reproductive rights
    • Kallianes V,Rubenfeld P.Disabled women and reproductive rights.Disability & Society. 1997;12 (2): 203-221.
    • (1997) Disability & Society , vol.12 , Issue.2 , pp. 203-221
    • Kallianes, V.1    Rubenfeld, P.2
  • 30
    • 0036128893 scopus 로고    scopus 로고
    • Feelings associated with being a carrier and characteristics of reproductive decision making in women known to be carriers of X-linked conditions
    • Kay E,Kingston H.Feelings associated with being a carrier and characteristics of reproductive decision making in women known to be carriers of X-linked conditions.Journal of Health Psychology. 2002;7 (2): 169-181.
    • (2002) Journal of Health Psychology , vol.7 , Issue.2 , pp. 169-181
    • Kay, E.1    Kingston, H.2
  • 31
    • 0032916138 scopus 로고    scopus 로고
    • Attitudes toward Cystic Fibrosis carrier and prenatal testing and utilization of carrier testing among relatives of individuals with Cystic Fibrosis
    • Lafayette D,Abuelo D,Passero MA, et al.Attitudes toward Cystic Fibrosis carrier and prenatal testing and utilization of carrier testing among relatives of individuals with Cystic Fibrosis.Journal of Genetic Counseling. 1999;8 (1): 17-36.
    • (1999) Journal of Genetic Counseling , vol.8 , Issue.1 , pp. 17-36
    • Lafayette, D.1    Abuelo, D.2    Passero, M.A.3
  • 32
    • 54049115900 scopus 로고    scopus 로고
    • Understanding the experience of living with spinal muscular atrophy: A qualitative description
    • Lamb C,Peden A.Understanding the experience of living with spinal muscular atrophy: A qualitative description.The Journal of Neuroscience Nursing. 2008;40 (4): 250-256.
    • (2008) The Journal of Neuroscience Nursing , vol.40 , Issue.4 , pp. 250-256
    • Lamb, C.1    Peden, A.2
  • 33
    • 0035083252 scopus 로고    scopus 로고
    • Contemplating selective reproduction: The subjective appraisal of parenting a child with a disability
    • Lawson K.Contemplating selective reproduction: The subjective appraisal of parenting a child with a disability.Journal of Reproductive and Infant Psychology. 2001;19 (1): 73-82.
    • (2001) Journal of Reproductive and Infant Psychology , vol.19 , Issue.1 , pp. 73-82
    • Lawson, K.1
  • 34
    • 0004245266 scopus 로고
    • Chicago, IL and London: The University of Chicago Press
    • Leder DThe Absent Body. Chicago, IL and London: The University of Chicago Press; 1990:182-194.
    • (1990) The Absent Body , pp. 182-194
    • Leder, D.1
  • 35
    • 0343168434 scopus 로고
    • Overall C, ed. Toronto, ON, Canada: The Women's Press
    • Lippman AThe Future of Human Reproduction. Overall C, ed. Toronto, ON, Canada: The Women's Press; 1989:182-194.
    • (1989) The Future of Human Reproduction , pp. 182-194
    • Lippman, A.1
  • 36
    • 0025913958 scopus 로고
    • Prenatal genetic testing and screening: Constructing needs and reinforcing inequities
    • Lippman A.Prenatal genetic testing and screening: Constructing needs and reinforcing inequities.American Journal of Law & Medicine. 1991;7 (1-2): 15-52.
    • (1991) American Journal of Law & Medicine , vol.7 , Issue.1-2 , pp. 15-52
    • Lippman, A.1
  • 37
    • 77955868855 scopus 로고    scopus 로고
    • Interrogating the dynamics between power, knowledge and pregnant bodies in amniocentesis decision making
    • Markens S,Browner C,Mabel Preloran H.Interrogating the dynamics between power, knowledge and pregnant bodies in amniocentesis decision making.Sociology of Health & Illness. 2010;32 (1): 37-56.
    • (2010) Sociology of Health & Illness , vol.32 , Issue.1 , pp. 37-56
    • Markens, S.1    Browner, C.2    Mabel Preloran, H.3
  • 38
    • 0033015696 scopus 로고    scopus 로고
    • Because of the risks: How pregnant US women account for refusing prenatal screening
    • Markens S,Browner C,Press N.Because of the risks: How pregnant US women account for refusing prenatal screening.Social Science & Medicine. 1999;49 (3): 359-369.
    • (1999) Social Science & Medicine , vol.49 , Issue.3 , pp. 359-369
    • Markens, S.1    Browner, C.2    Press, N.3
  • 40
    • 0034257442 scopus 로고    scopus 로고
    • Disability, impairment or illness? The relevance of the social model of disability to the study of mental disorder
    • Mulvany J.Disability, impairment or illness? The relevance of the social model of disability to the study of mental disorder.Sociology of Health & Illness. 2000;22 (5): 582-601.
    • (2000) Sociology of Health & Illness , vol.22 , Issue.5 , pp. 582-601
    • Mulvany, J.1
  • 42
    • 0033462096 scopus 로고    scopus 로고
    • Disability studies and phenomenology: The carnal politics of everyday life
    • Paterson K,Hughes B.Disability studies and phenomenology: The carnal politics of everyday life.Disability & Society. 1999;14 (5): 597-610.
    • (1999) Disability & Society , vol.14 , Issue.5 , pp. 597-610
    • Paterson, K.1    Hughes, B.2
  • 43
    • 0030803565 scopus 로고    scopus 로고
    • Why women say yes to prenatal diagnosis
    • Press N,Browner C.Why women say yes to prenatal diagnosis.Social Science & Medicine. 1997;45 (7): 979-989.
    • (1997) Social Science & Medicine , vol.45 , Issue.7 , pp. 979-989
    • Press, N.1    Browner, C.2
  • 44
    • 0036023479 scopus 로고    scopus 로고
    • Negotiating psycho-emotional dimensions of disability and their influence on identity constructions
    • Reeve D.Negotiating psycho-emotional dimensions of disability and their influence on identity constructions.Disability & Society. 2002;17 (5): 493-508.
    • (2002) Disability & Society , vol.17 , Issue.5 , pp. 493-508
    • Reeve, D.1
  • 46
    • 48249104007 scopus 로고    scopus 로고
    • How is disability understood?
    • Thomas C.How is disability understood?.Disability & Society. 2004;19 (6): 563-568.
    • (2004) Disability & Society , vol.19 , Issue.6 , pp. 563-568
    • Thomas, C.1
  • 47
    • 77954742049 scopus 로고    scopus 로고
    • Parental perspectives on caring for a child with chronic kidney disease: An in-depth interview study
    • Tong A,Lowe A,Sainsbury P, et al.Parental perspectives on caring for a child with chronic kidney disease: An in-depth interview study.Child: Care, Health and Development. 2010;36 (4): 549-557.
    • (2010) Child: Care, Health and Development , vol.36 , Issue.4 , pp. 549-557
    • Tong, A.1    Lowe, A.2    Sainsbury, P.3
  • 48
    • 0036781251 scopus 로고    scopus 로고
    • Psychopathology and familial stress: Comparison of boys with Fragile X syndrome and spinal muscular atrophy
    • Von Gontard A,Backes M,Laufersweiler-Plass C, et al.Psychopathology and familial stress: Comparison of boys with Fragile X syndrome and spinal muscular atrophy.Journal of Child Psychology and Psychiatry. 2002;43 (7): 949-957.
    • (2002) Journal of Child Psychology and Psychiatry , vol.43 , Issue.7 , pp. 949-957
    • von Gontard, A.1    Backes, M.2    Laufersweiler-Plass, C.3
  • 49
    • 0036023484 scopus 로고    scopus 로고
    • Well I know this is going to sound very strange to you, but I don't see myself as a disabled person: Identity and disability
    • Watson N.Well I know this is going to sound very strange to you, but I don't see myself as a disabled person: Identity and disability.Disability & Society. 2002;17 (5): 509-527.
    • (2002) Disability & Society , vol.17 , Issue.5 , pp. 509-527
    • Watson, N.1
  • 50
    • 0026633748 scopus 로고
    • Attitudes toward the prenatal diagnosis of Cystic Fibrosis: Factors influencing decision making amongst affected families
    • Wertz D,Janes S,Rosenfeld J, et al.Attitudes toward the prenatal diagnosis of Cystic Fibrosis: Factors influencing decision making amongst affected families.American Journal of Human Genetics. 1992;50 (5): 1077-1085.
    • (1992) American Journal of Human Genetics , vol.50 , Issue.5 , pp. 1077-1085
    • Wertz, D.1    Janes, S.2    Rosenfeld, J.3
  • 51
    • 0002053963 scopus 로고    scopus 로고
    • The vicissitudes of embodiment across the chronic illness trajectory
    • Williams SJ.The vicissitudes of embodiment across the chronic illness trajectory.Body & Society. 1996;2 (2): 23-47.
    • (1996) Body & Society , vol.2 , Issue.2 , pp. 23-47
    • Williams, S.J.1
  • 52
    • 0034007548 scopus 로고    scopus 로고
    • Mutation update: An update of the mutation spectrum of the survival motor neuron gene (SMN1) in autosomal recessive spinal muscular atrophy (SMA)
    • Wirth B.Mutation update: An update of the mutation spectrum of the survival motor neuron gene (SMN1) in autosomal recessive spinal muscular atrophy (SMA).Human Mutation. 2000;15 (3): 228-237.
    • (2000) Human Mutation , vol.15 , Issue.3 , pp. 228-237
    • Wirth, B.1
  • 53
    • 84866145707 scopus 로고    scopus 로고
    • How families of children with complex care needs participate in everyday life
    • Woodgate RL,Edwards M,Ripat J.How families of children with complex care needs participate in everyday life.Social Science & Medicine. 2012;75 (10): 1912-1920.
    • (2012) Social Science & Medicine , vol.75 , Issue.10 , pp. 1912-1920
    • Woodgate, R.L.1    Edwards, M.2    Ripat, J.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.