메뉴 건너뛰기




Volumn 22, Issue 2, 2013, Pages 188-199

Young adults' experience of living with neurofibromatosis type 1

Author keywords

Adult; Concerns; Coping; Experience; Neurofibromatosis type 1; Psychosocial

Indexed keywords

ADOLESCENT; ADULT; COGNITION DISORDERS; COMPLICATION; FAMILY; FEMALE; HUMAN; HUMAN RELATION; MALE; MENTAL DISORDERS; NEUROFIBROMATOSIS; NORWAY; PATHOPHYSIOLOGY; PSYCHOLOGY; SELF CONCEPT; YOUNG ADULT; ARTICLE; COGNITIVE DEFECT; MENTAL DISEASE; PSYCHOLOGICAL ASPECT;

EID: 84879686408     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-012-9527-5     Document Type: Article
Times cited : (32)

References (33)
  • 2
    • 4043092755 scopus 로고    scopus 로고
    • Social skills of children with neurofibromatosis type 1
    • 15287247 10.1017/S0012162204000921
    • Barton, B.; & North, K. (2004). Social skills of children with neurofibromatosis type 1. Developmental Medicine and Child Neurology, 46, 553-563.
    • (2004) Developmental Medicine and Child Neurology , vol.46 , pp. 553-563
    • Barton, B.1    North, K.2
  • 3
    • 33344465645 scopus 로고    scopus 로고
    • Neurofibromatose de type 1. Troubles psychiatrique et alteration de la qualite de vie (in French)
    • 10.1016/S0755-4982(06)74570-5
    • Belzeaux, R.; & Lancon, C. (2006). Neurofibromatose de type 1. Troubles psychiatrique et alteration de la qualite de vie (in French). Presse Médicale, 35, 277-280.
    • (2006) Presse Médicale , vol.35 , pp. 277-280
    • Belzeaux, R.1    Lancon, C.2
  • 4
    • 0027303010 scopus 로고
    • Neurofibromatosis type 1 (NF1): Knowledge, experience, and reproductive decisions of affected patients and families
    • 8411029 10.1136/jmg.30.7.567 1:STN:280:DyaK2c%2Fhs1emsA%3D%3D
    • Benjamin, C. M.; Colley, A.; Donnai, D.; et al. (1993). Neurofibromatosis type 1 (NF1): knowledge, experience, and reproductive decisions of affected patients and families. Journal of Medical Genetics, 30, 567-574.
    • (1993) Journal of Medical Genetics , vol.30 , pp. 567-574
    • Benjamin, C.M.1    Colley, A.2    Donnai, D.3
  • 5
    • 84986678870 scopus 로고
    • The effectiveness of family interventions in the treatment of physical illness
    • 10.1111/j.1752-0606.1995.tb00178.x
    • Campbell, T. L.; & Patterson, J. M. (1995). The effectiveness of family interventions in the treatment of physical illness. Journal of Marital and Family Therapy, 21, 545-583.
    • (1995) Journal of Marital and Family Therapy , vol.21 , pp. 545-583
    • Campbell, T.L.1    Patterson, J.M.2
  • 6
    • 13844280979 scopus 로고    scopus 로고
    • Behavioural, academic and neuropsychological profile of normally gifted Neurofibromatosis type i children
    • 15634310 10.1111/j.1365-2788.2005.00660.x
    • Descheemaeker, M.-J.; Ghesquiere, P.; Symons, H.; Fryns, J. P.; & Legius, E. (2005). Behavioural, academic and neuropsychological profile of normally gifted Neurofibromatosis type I children. Journal of Intellectual Disability Research, 49, 33-46.
    • (2005) Journal of Intellectual Disability Research , vol.49 , pp. 33-46
    • Descheemaeker, M.-J.1    Ghesquiere, P.2    Symons, H.3    Fryns, J.P.4    Legius, E.5
  • 8
    • 33847680538 scopus 로고    scopus 로고
    • Neurofibromatosis 1 and neurofibromatosis 2: A twenty first century perspective
    • 17362838 10.1016/S1474-4422(07)70075-3 Review
    • Ferner, R. E. (2007). Neurofibromatosis 1 and neurofibromatosis 2: a twenty first century perspective. Lancet Neurology, 6, 340-351. Review.
    • (2007) Lancet Neurology , vol.6 , pp. 340-351
    • Ferner, R.E.1
  • 9
    • 0030966414 scopus 로고    scopus 로고
    • Type 1 neurofibromatosis: A descriptive analysis of the disorder in 1728 patients
    • 9128932 10.1002/(SICI)1096-8628(19970516)70:2<138: AID-AJMG7>3.0.CO;2-U 1:STN:280:DyaK2s3nsFSgug%3D%3D
    • Friedman, J. M.; & Birch, P. H. (1997). Type 1 neurofibromatosis: a descriptive analysis of the disorder in 1728 patients. American Journal of Medical Genetics, 70, 138-143.
    • (1997) American Journal of Medical Genetics , vol.70 , pp. 138-143
    • Friedman, J.M.1    Birch, P.H.2
  • 12
    • 33748159785 scopus 로고    scopus 로고
    • Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1
    • Graf, A.; Landolt, M.A.; Mori, A.C.; & Boltshauser, E. (2006). Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1. The Journal of Pediatrics, 348-353.
    • (2006) The Journal of Pediatrics , pp. 348-353
    • Graf, A.1    Landolt M., .A.2    Mori A., .C.3    Boltshauser, E.4
  • 15
    • 0030890187 scopus 로고    scopus 로고
    • Suicide as an outcome for mental disorders. A meta-analysis (abstract)
    • 10.1192/bjp.170.3.205 1:STN:280:DyaK2sznt12ksA%3D%3D
    • Harris, E. C.; & Barraclough, B. (1997). Suicide as an outcome for mental disorders. A meta-analysis (abstract). The British Journal of Psychiatry: the Journal of Mental Science, 170(4), 205-228.
    • (1997) The British Journal of Psychiatry: The Journal of Mental Science , vol.170 , Issue.4 , pp. 205-228
    • Harris, E.C.1    Barraclough, B.2
  • 17
    • 0024456038 scopus 로고
    • A genetic study of von Recklinghausen neurofibromatosis in south east Wales. Prevalence, fitness, mutation rate, and effect of parental transmission on severity
    • 2511318 10.1136/jmg.26.11.704 1:STN:280:DyaK3c%2FmsVCmsA%3D%3D
    • Huson, S. M.; Compston, D. A. S.; Clark, P.; & Harper, P. S. (1989). A genetic study of von Recklinghausen neurofibromatosis in south east Wales. Prevalence, fitness, mutation rate, and effect of parental transmission on severity. Journal of Medical Genetics, 26, 704-711.
    • (1989) Journal of Medical Genetics , vol.26 , pp. 704-711
    • Huson, S.M.1    Compston, D.A.S.2    Clark, P.3    Harper, P.S.4
  • 19
    • 84879695441 scopus 로고    scopus 로고
    • Parental effects from participation in an intensified multimodal programme of habilitation for children with cerebral palsy
    • Lerdal, B.; Sørensen, K.; Vestrheim, I.E.; & Skranes, J. (2011). Parental effects from participation in an intensified multimodal programme of habilitation for children with cerebral palsy. Scandinavian Journal of Disability Research, 1-10.
    • (2011) Scandinavian Journal of Disability Research , pp. 1-10
    • Lerdal, B.1    Sørensen, K.2    Vestrheim I., .E.3    Skranes, J.4
  • 20
    • 76649083556 scopus 로고    scopus 로고
    • Invisible impairments: Dilemmas of concealment and disclosure
    • 10.1080/15017410701391567
    • Lingsom, S. (2008). Invisible impairments: dilemmas of concealment and disclosure. Scandinavian Journal of Disability Research, 10(1), 2-16.
    • (2008) Scandinavian Journal of Disability Research , vol.10 , Issue.1 , pp. 2-16
    • Lingsom, S.1
  • 22
    • 79956296069 scopus 로고    scopus 로고
    • Parents' and children's communication about genetic risk: A qualitative study, learning from families' experience
    • 21326287 10.1038/ejhg.2010.258
    • Metcalfe, A.; Plumridge, G.; Coad, J.; Shanks, A.; & Gill, P. (2011). Parents' and children's communication about genetic risk: a qualitative study, learning from families' experience. European Journal of Human Genetics, 19, 640-646.
    • (2011) European Journal of Human Genetics , vol.19 , pp. 640-646
    • Metcalfe, A.1    Plumridge, G.2    Coad, J.3    Shanks, A.4    Gill, P.5
  • 23
    • 0036700297 scopus 로고    scopus 로고
    • Cognitive deficits in neurofibromatosis 1
    • 12403559 10.1177/088307380201700811
    • North, K.; Hyman, S.; & Barton, B. (2002). Cognitive deficits in neurofibromatosis 1. Journal of Child Neurology, 17, 605-612.
    • (2002) Journal of Child Neurology , vol.17 , pp. 605-612
    • North, K.1    Hyman, S.2    Barton, B.3
  • 24
    • 0007694434 scopus 로고    scopus 로고
    • The creation of theory: A recent application of the grounded theory method
    • Pandit, N. R. (1996). The creation of theory: a recent application of the grounded theory method. The Qualitative Report, 2(4).
    • (1996) The Qualitative Report , vol.2 , Issue.4
    • Pandit, N.R.1
  • 25
    • 34548150770 scopus 로고    scopus 로고
    • Neurofibromatosis type 1 in genetic counseling practice: Recommendations of the national society of genetic counselors
    • 17636453 10.1007/s10897-007-9101-8
    • Radtke, H. B.; Sebold, C. D.; Allison, C.; Haidle, J. L.; & Schneider, G. (2007). Neurofibromatosis type 1 in genetic counseling practice: recommendations of the national society of genetic counselors. Journal of Genetic Counseling, 16, 387-407.
    • (2007) Journal of Genetic Counseling , vol.16 , pp. 387-407
    • Radtke, H.B.1    Sebold, C.D.2    Allison, C.3    Haidle, J.L.4    Schneider, G.5
  • 26
  • 27
    • 41849150000 scopus 로고    scopus 로고
    • Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1
    • 17905803 10.1093/jpepsy/jsm077
    • Reiter-Purtill, J.; Schorry, E. K.; Lovell, A.; Vannatta, K.; Gerhardt, C. A.; & Noll, R. B. (2008). Parental distress, family functioning, and social support in families with and without a child with neurofibromatosis 1. Journal of Pediatric Psychology, 33, 422-434.
    • (2008) Journal of Pediatric Psychology , vol.33 , pp. 422-434
    • Reiter-Purtill, J.1    Schorry, E.K.2    Lovell, A.3    Vannatta, K.4    Gerhardt, C.A.5    Noll, R.B.6
  • 28
    • 4644320457 scopus 로고    scopus 로고
    • Perception of disease severity in adolescents diagnosed with neurofibromatosis type 1
    • 15450543
    • Sebold, C. D.; Lovell, A.; Hopkin, R.; Noll, R. B.; & Schorry, E. K. (2004). Perception of disease severity in adolescents diagnosed with neurofibromatosis type 1. Journal of Adolescent Health, 35, 297-302.
    • (2004) Journal of Adolescent Health , vol.35 , pp. 297-302
    • Sebold, C.D.1    Lovell, A.2    Hopkin, R.3    Noll, R.B.4    Schorry, E.K.5
  • 29
    • 85013686283 scopus 로고    scopus 로고
    • The significance of ICT in disabled youth's negotiations
    • 10.1080/15017410902830587
    • Söderström, S. (2009). The significance of ICT in disabled youth's negotiations. Scandinavian Journal of Disability Research, 11(2), 131-144.
    • (2009) Scandinavian Journal of Disability Research , vol.11 , Issue.2 , pp. 131-144
    • Söderström, S.1
  • 30
    • 0031954202 scopus 로고    scopus 로고
    • Psychosocial adaptation in adolescents and young adults with Marfan syndrome: An exploratory study
    • 9610804 10.1136/jmg.35.5.405
    • Tongerloo, A. V.; & De Paepe, A. (1998). Psychosocial adaptation in adolescents and young adults with Marfan syndrome: an exploratory study. Journal of Medical Genetics, 35, 405-409.
    • (1998) Journal of Medical Genetics , vol.35 , pp. 405-409
    • Tongerloo, A.V.1    De Paepe, A.2
  • 31
    • 0031984571 scopus 로고    scopus 로고
    • Effects of pediatric chronic physical disorders on child and family adjustment
    • 9534085 10.1017/S0021963097001741 1:STN:280:DyaK1c7psFGluw%3D%3D
    • Wallander, J. L.; & Varni, J. W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29-46.
    • (1998) Journal of Child Psychology and Psychiatry , vol.39 , pp. 29-46
    • Wallander, J.L.1    Varni, J.W.2
  • 32
    • 0035170448 scopus 로고    scopus 로고
    • Quality-of-life impairment in neurofibromatosis type 1. A cross-sectional study of 128 cases
    • 11708944 1:STN:280:DC%2BD3MnoslGrsw%3D%3D
    • Wolkenstein, P.; Zeller, J.; Revuz, J.; Ecosse, E.; & Leplege, A. (2001). Quality-of-life impairment in neurofibromatosis type 1. A cross-sectional study of 128 cases. Archives of Dermatology, 137, 1421-1425.
    • (2001) Archives of Dermatology , vol.137 , pp. 1421-1425
    • Wolkenstein, P.1    Zeller, J.2    Revuz, J.3    Ecosse, E.4    Leplege, A.5
  • 33
    • 0344096547 scopus 로고    scopus 로고
    • A psychiatric 12-year follow-up of adult patients with neurofibromatosis type1
    • 10094241 10.1016/S0022-3956(98)00052-1
    • Zöller, M. E.; & Rembeck, B. (1999). A psychiatric 12-year follow-up of adult patients with neurofibromatosis type1. Journal of Psychiatric Research, 33(1), 63-68.
    • (1999) Journal of Psychiatric Research , vol.33 , Issue.1 , pp. 63-68
    • Zöller, M.E.1    Rembeck, B.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.