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Volumn 7, Issue 3, 2011, Pages 225-238

Healthcare experiences of families affected by Huntington disease: Need for improved care

Author keywords

Genetics; healthcare; Huntington disease; qualitative research; social services

Indexed keywords

ADULT; ARTICLE; CANADA; CAREGIVER SUPPORT; CLINICAL ARTICLE; CONTROLLED STUDY; FEMALE; FOLLOW UP; FRUSTRATION; GENERAL PRACTITIONER; HEALTH CARE; HEALTH CARE ACCESS; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HEALTH CARE QUALITY; HEALTH EDUCATION; HEALTH SERVICE; HUMAN; HUNTINGTON CHOREA; MALE; PERSONAL EXPERIENCE; RISK; SEMI STRUCTURED INTERVIEW;

EID: 80052630481     PISSN: 17423953     EISSN: 17459206     Source Type: Journal    
DOI: 10.1177/1742395311403637     Document Type: Article
Times cited : (26)

References (44)
  • 1
    • 0042978831 scopus 로고    scopus 로고
    • Genetics and genomics in practice: The continuum from genetic disease to genetic information in health and disease
    • DOI 10.1097/01.GIM.0000076977.90682.A5
    • Khoury M. Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease. Genet Med 2003 ; 5: 261-268. (Pubitemid 37020858)
    • (2003) Genetics in Medicine , vol.5 , Issue.4 , pp. 261-268
    • Khoury, M.J.1
  • 2
    • 33644894202 scopus 로고    scopus 로고
    • The challenge of developing evidence-based genetics health care in practice
    • DOI 10.1007/s10689-005-2576-2
    • Wilson B. The challenge of developing evidence-based genetics health care in practice. Fam Cancer 2006 ; 5: 55-59. (Pubitemid 43384320)
    • (2006) Familial Cancer , vol.5 , Issue.1 , pp. 55-59
    • Wilson, B.J.1
  • 3
    • 20444374342 scopus 로고    scopus 로고
    • ACCE: A model process for evaluating data on emerging genetic tests
    • Khoury M, Little J, Burke W (eds) New York: Oxford University Press
    • Haddow J. and Palomaki G. ACCE: a model process for evaluating data on emerging genetic tests. In: Khoury M, Little J, Burke W (eds) Human Genome Epidemiology. New York: Oxford University Press, 2004, pp. 89-102.
    • (2004) Human Genome Epidemiology , pp. 89-102
    • Haddow, J.1    Palomaki, G.2
  • 4
    • 72549093007 scopus 로고    scopus 로고
    • National Coalition for Health Professional Education in Genetics (NCHPEG), accessed December 5, 2010
    • National Coalition for Health Professional Education in Genetics (NCHPEG), 'Core competencies in genetics for health professionals', http://www.nchpeg.org/ ( 2007, accessed December 5, 2010 )
    • (2007) Core Competencies in Genetics for Health Professionals
  • 6
    • 38149036642 scopus 로고    scopus 로고
    • A systematic review of perceived risks, psychological and behavioral impacts of genetic testing
    • Heshka J., Palleschi C., Howley H., Wilson B. and Wells P. A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med 2008 ; 10: 19-32.
    • (2008) Genet Med , vol.10 , pp. 19-32
    • Heshka, J.1    Palleschi, C.2    Howley, H.3    Wilson, B.4    Wells, P.5
  • 8
    • 0028470671 scopus 로고
    • Guidelines for the molecular genetics predictive test in Huntington disease
    • International Huntington Association and the World Federation of Neurology Research group on Huntington's Chorea
    • International Huntington Association and the World Federation of Neurology Research group on Huntington's Chorea. Guidelines for the molecular genetics predictive test in Huntington disease. J Med Genet 1994 ; 31: 555-599.
    • (1994) J Med Genet , vol.31 , pp. 555-599
  • 9
    • 0842327450 scopus 로고    scopus 로고
    • Technical Standards and Guidelines for Huntington Disease Testing
    • DOI 10.1097/01.GIM.0000106165.74751.15
    • Potter N., Spector E. and Prior T. Technical standards and guidelines for Huntington Disease testing. Genet Med 2004 ; 6: 61-65. (Pubitemid 38175981)
    • (2004) Genetics in Medicine , vol.6 , Issue.1 , pp. 61-65
    • Potter, N.T.1    Spector, E.B.2    Prior, T.W.3
  • 10
    • 77449112546 scopus 로고    scopus 로고
    • Huntington disease: Families' experiences of healthcare services
    • Skirton H., Williams J., Jackson-Barnette J. and Paulsen J. Huntington disease: families' experiences of healthcare services. J Adv Nurs 2010 ; 66: 500-510.
    • (2010) J Adv Nurs , vol.66 , pp. 500-510
    • Skirton, H.1    Williams, J.2    Jackson-Barnette, J.3    Paulsen, J.4
  • 11
    • 44649113000 scopus 로고    scopus 로고
    • Huntington's disease. Part 3: Family aspects of HD
    • Aubeeluck A. and Moskowitz C. Huntington's disease. Part 3: family aspects of HD. Br J Nurs 2008 ; 17: 328-331.
    • (2008) Br J Nurs , vol.17 , pp. 328-331
    • Aubeeluck, A.1    Moskowitz, C.2
  • 12
    • 0029450379 scopus 로고
    • The experiences of family members of persons with Huntington disease
    • Semple O. The experiences of family members of persons with Huntington disease. Perspect 1995 ; 19: 4-10.
    • (1995) Perspect , vol.19 , pp. 4-10
    • Semple, O.1
  • 13
    • 0034640679 scopus 로고    scopus 로고
    • Psychosocial impact of predictive testing for Huntington disease on support persons
    • Williams J., Schutte D., Holkup P., Evers C. and Muilenburg A. Psychosocial impact of predictive testing for Huntington disease on support persons. Am J Med Genet B 2000 ; 96: 353-359.
    • (2000) Am J Med Genet B , vol.96 , pp. 353-359
    • Williams, J.1    Schutte, D.2    Holkup, P.3    Evers, C.4    Muilenburg, A.5
  • 14
    • 33847683050 scopus 로고    scopus 로고
    • Predictive testing for Huntington's disease
    • DOI 10.1016/j.brainresbull.2006.10.023, PII S0361923006003297
    • Tibben A. Predictive testing for Huntington's disease. Brain Res Bull 2007 ; 72: 165-171. (Pubitemid 46367464)
    • (2007) Brain Research Bulletin , vol.72 , Issue.2-3 SPEC. ISS. , pp. 165-171
    • Tibben, A.1
  • 15
    • 0014242658 scopus 로고
    • Social aspects of Huntington's chorea
    • Hans M. and Gilmore T. Social aspects of Huntington's chorea. Br J Psychiatry 1968 ; 114: 93-98.
    • (1968) Br J Psychiatry , vol.114 , pp. 93-98
    • Hans, M.1    Gilmore, T.2
  • 16
    • 0031584044 scopus 로고    scopus 로고
    • Using research to develop care for patients with Huntington's disease
    • Skirton H. and Glendinning N. Using research to develop care for patients with Huntington's disease. Br J Nurs 1997 ; 6: 83-90.
    • (1997) Br J Nurs , vol.6 , pp. 83-90
    • Skirton, H.1    Glendinning, N.2
  • 17
    • 2942639683 scopus 로고    scopus 로고
    • Living with Huntington's disease: Need for supportive care
    • DOI 10.1111/j.1442-2018.2004.00183.x
    • Dawson S., Kristjanson L., Toye C. and Flett P. Living with Huntington's disease: need for supportive care. Nurs Health Sci 2004 ; 6: 123-130. (Pubitemid 38765251)
    • (2004) Nursing and Health Sciences , vol.6 , Issue.2 , pp. 123-130
    • Dwason, S.1    Kristjanson, L.2    Toye, C.M.3    Flett, P.4
  • 18
    • 44949131027 scopus 로고    scopus 로고
    • Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting
    • Soltysiak B., Gardiner P. and Skirton H. Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting. J Clin Nurs 2008 ; 17: 226-234.
    • (2008) J Clin Nurs , vol.17 , pp. 226-234
    • Soltysiak, B.1    Gardiner, P.2    Skirton, H.3
  • 19
    • 77952935260 scopus 로고    scopus 로고
    • A new scale to measure family members' perception of community health care services for persons with Huntington disease
    • Sousa V., Williams J., Barnette J. and Reed D. A new scale to measure family members' perception of community health care services for persons with Huntington disease. J Eval Clin Practice 2010 ; 16: 470-475.
    • (2010) J Eval Clin Practice , vol.16 , pp. 470-475
    • Sousa, V.1    Williams, J.2    Barnette, J.3    Reed, D.4
  • 21
    • 26844503740 scopus 로고    scopus 로고
    • Clinical genetics issues encountered by family physicians
    • Acheson L., Stange K. and Zyzanksi S. Clinical genetics issues encountered by family physicians. Genet Med 2005 ; 7: 501-507.
    • (2005) Genet Med , vol.7 , pp. 501-507
    • Acheson, L.1    Stange, K.2    Zyzanksi, S.3
  • 22
    • 0042905739 scopus 로고    scopus 로고
    • Barriers to the provision of genetic services by primary care physicians: A systematic review of the literature
    • DOI 10.1097/01.GIM.0000055201.16487.61
    • Suther S. and Goodson P. Barriers to the provision of genetic services by primary care physicians: A systematic review of the literature. Genet Med 2003 ; 5: 70-76. (Pubitemid 36992615)
    • (2003) Genetics in Medicine , vol.5 , Issue.2 , pp. 70-76
    • Suther, S.1    Goodson, P.2
  • 24
    • 44149127496 scopus 로고    scopus 로고
    • Health care utilization in Canada: Twenty five years of evidence
    • Curtis C. and MacMinn W. Health care utilization in Canada: twenty five years of evidence. Can Pub Policy 2008 ; 34: 65-88.
    • (2008) Can Pub Policy , vol.34 , pp. 65-88
    • Curtis, C.1    MacMinn, W.2
  • 25
    • 69749107097 scopus 로고    scopus 로고
    • Reasons for self-reported unmet healthcare needs in Canada: A population-based provincial comparison
    • Sibley L. and Glazier R. Reasons for self-reported unmet healthcare needs in Canada: a population-based provincial comparison. Healthcare Pol 2009 ; 5: 87-101.
    • (2009) Healthcare Pol , vol.5 , pp. 87-101
    • Sibley, L.1    Glazier, R.2
  • 26
    • 0034241415 scopus 로고    scopus 로고
    • Whatever happened to qualitative description?
    • Sandelowski M. Whatever happened to qualitative description? Res Nurs Health 2000 ; 23: 334-340.
    • (2000) Res Nurs Health , vol.23 , pp. 334-340
    • Sandelowski, M.1
  • 31
    • 47949103529 scopus 로고    scopus 로고
    • Survey of community-based programs serving US families with Huntington's disease: Perceived barriers and facilitators in the residential placement process
    • Lechich A. and Lovecky D. Survey of community-based programs serving US families with Huntington's disease: perceived barriers and facilitators in the residential placement process. Care Manage J 2008 ; 9: 65-74.
    • (2008) Care Manage J , vol.9 , pp. 65-74
    • Lechich, A.1    Lovecky, D.2
  • 32
    • 33846325824 scopus 로고    scopus 로고
    • Educating health-care professionals about genetics and genomics
    • Guttmacher A., Porteous M. and McInerney D. Educating health-care professionals about genetics and genomics. Nat Rev Genet 2007 ; 8: 151-156.
    • (2007) Nat Rev Genet , vol.8 , pp. 151-156
    • Guttmacher, A.1    Porteous, M.2    McInerney, D.3
  • 33
    • 0035962319 scopus 로고    scopus 로고
    • The challenge of integrating genetic medicine into primary care
    • Emery J. and Hayflick S. The challenge of integrating genetic medicine into primary care. BMJ 2001 ; 322: 1027-1030. (Pubitemid 32391838)
    • (2001) British Medical Journal , vol.322 , Issue.7293 , pp. 1027-1030
    • Emery, J.1    Hayflick, S.2
  • 35
    • 66249104344 scopus 로고    scopus 로고
    • Long term outcomes of the ''Genetics in Primary Care'' faculty development initiative
    • Laberge AM, Fryer-Edwards K., Kyler P., et al. Long term outcomes of the ''Genetics in Primary Care'' faculty development initiative. Fam Med 2009 ; 41: 266-270.
    • (2009) Fam Med , vol.41 , pp. 266-270
    • Laberge, A.M.1    Fryer-Edwards, K.2    Kyler, P.3
  • 36
    • 0038014099 scopus 로고    scopus 로고
    • Integration of genetics into clinical teaching in medical school education
    • DOI 10.1097/00125817-200211001-00007
    • Korf B. Integration of genetics into clinical teaching in medical school education. Genet Med 2002 ; 4: 33S - 38S. (Pubitemid 44133567)
    • (2002) Genetics in Medicine , vol.4 , Issue.6 SUPPL.
    • Korf, B.R.1
  • 37
    • 35848955917 scopus 로고    scopus 로고
    • The impact of a genetics education program on physicians' knowledge and genetic counseling referral patterns
    • DOI 10.1080/01421590701477373, PII 783688594
    • Clyman J., Nazir F., Tarolli S., et al. The impact of a genetics education program on physicians' knowledge and genetic counseling referral patterns. Med Teach 2007 ; 29: e143 - e150. (Pubitemid 350056041)
    • (2007) Medical Teacher , vol.29 , Issue.6
    • Clyman, J.C.1    Nazir, F.2    Tarolli, S.3    Black, E.4    Lombardi, R.Q.5    Higgins, J.J.6
  • 38
    • 73249147469 scopus 로고    scopus 로고
    • The Genetics Education Project: Changing primary care providers' knowledge, attitudes and confidence in delivering genetics services
    • Carroll J., Rideout A., Wilson B., Allanson J., Blaine SM, Esplen MJ, et al. The Genetics Education Project: changing primary care providers' knowledge, attitudes and confidence in delivering genetics services. Can Fam Physician 2009 ; 55: e92 - e99.
    • (2009) Can Fam Physician , vol.55
    • Carroll, J.1    Rideout, A.2    Wilson, B.3    Allanson, J.4    Blaine, S.M.5    Esplen, M.J.6
  • 40
    • 34248213013 scopus 로고    scopus 로고
    • Implementing telehealth to support medical practice in rural/remote regions: What are the conditions for success?
    • Gagnon M., Duplantie J., Fortin J. and Landry R. Implementing telehealth to support medical practice in rural/remote regions: what are the conditions for success? Implement Sci 2006 ; 1: 18-24.
    • (2006) Implement Sci , vol.1 , pp. 18-24
    • Gagnon, M.1    Duplantie, J.2    Fortin, J.3    Landry, R.4
  • 41
    • 70549087997 scopus 로고    scopus 로고
    • A balancing act-telehealth cancer genetics and practitioners' experiences of a triadic consultation
    • Zilliacus E., Meiser B., Lobb E., Barlow-Stewart K. and Tucker K. A balancing act-telehealth cancer genetics and practitioners' experiences of a triadic consultation. J Genet Counsel 2009 ; 18: 598-605.
    • (2009) J Genet Counsel , vol.18 , pp. 598-605
    • Zilliacus, E.1    Meiser, B.2    Lobb, E.3    Barlow-Stewart, K.4    Tucker, K.5
  • 42
    • 1642329097 scopus 로고    scopus 로고
    • Adverse Effects of Predictive Testing for Huntington Disease Underestimated: Long-Term Effects 7-10 Years after the Test
    • DOI 10.1037/0278-6133.23.2.189
    • Timman R., Roos R., Maat-Kievit K. and Tibben A. Adverse effects of predictive testing for Huntington disease underestimated: long-term effects 7-10 years after the test. Health Psych 2004 ; 23: 189-197. (Pubitemid 38365278)
    • (2004) Health Psychology , vol.23 , Issue.2 , pp. 189-197
    • Timman, R.1    Roos, R.2    Maat-Kievit, A.3    Tibben, A.4
  • 43
    • 33846672993 scopus 로고    scopus 로고
    • Young people's experiences of growing up in a family affected by Huntington's disease
    • DOI 10.1111/j.1399-0004.2006.00702.x
    • Forrest Keenan K., Miedzybrodzka Z., van Teijlingen E., McKee L. and Simpson S. Young people's experiences of growing up in a family affected by Huntington disease. Clin Genet 2007 ; 71: 120-129. (Pubitemid 46189215)
    • (2007) Clinical Genetics , vol.71 , Issue.2 , pp. 120-129
    • Keenan, K.F.1    Miedzybrodzka, Z.2    Van Teijlingen, E.3    McKee, L.4    Simpson, S.A.5
  • 44
    • 70349776551 scopus 로고    scopus 로고
    • Caregiving by teens for family members with Huntington disease
    • Williams J., Ayres L., Specht J., Sparbel K. and Klimek M. Caregiving by teens for family members with Huntington disease. J Fam Nurs 2009 ; 15: 273-294.
    • (2009) J Fam Nurs , vol.15 , pp. 273-294
    • Williams, J.1    Ayres, L.2    Specht, J.3    Sparbel, K.4    Klimek, M.5


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.