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Volumn 18, Issue 2, 2010, Pages 83-99

Development of the Huntington disease family concerns and strategies survey from focus group data

Author keywords

Family; Focus group; Health management; Huntington's disease

Indexed keywords

ADULT; AGED; CANADA; CLINICAL TRIAL; FAMILY; FEMALE; HUMAN; HUNTINGTON CHOREA; INFORMATION PROCESSING; MALE; MIDDLE AGED; MULTICENTER STUDY; NURSING; PSYCHOLOGY; QUESTIONNAIRE; UNITED STATES; VALIDATION STUDY;

EID: 77955596723     PISSN: 10613749     EISSN: None     Source Type: Journal    
DOI: 10.1891/1061-3749.18.2.83     Document Type: Article
Times cited : (11)

References (55)
  • 1
    • 77955597271 scopus 로고    scopus 로고
    • A measure to assess the impact of Huntington's disease on the quality of life of spousal carers
    • Aubeeluck, A., & Buchanan, H. (2006). A measure to assess the impact of Huntington's disease on the quality of life of spousal carers. British Journal of Neuroscience Nursing, 2(2), 88-95.
    • (2006) British Journal of Neuroscience Nursing , vol.2 , Issue.2 , pp. 88-95
    • Aubeeluck, A.1    Buchanan, H.2
  • 2
    • 0035942320 scopus 로고    scopus 로고
    • Retest effects and cognitive decline in longitudinal follow-up of patients with early HD
    • Bachoud-Levi, A. C., Maison, P., Bartolomeo, P., Boisse, M. F., Dalla Barba, G., Ergis, A. M., et al. (2001). Retest effects and cognitive decline in longitudinal follow-up of patients with early HD. Neurology, 56, 1052-1058.
    • (2001) Neurology , vol.56 , pp. 1052-1058
    • Bachoud-Levi, A.C.1    Maison, P.2    Bartolomeo, P.3    Boisse, M.F.4    Dalla Barba, G.5    Ergis, A.M.6
  • 3
    • 0033194940 scopus 로고    scopus 로고
    • Development and psychometric testing of the Bakas caregiving outcomes scale
    • Bakas, T., & Champion, V. (1999). Development and psychometric testing of the Bakas caregiving outcomes scale. Nursing Research, 48(5), 250-259.
    • (1999) Nursing Research , vol.48 , Issue.5 , pp. 250-259
    • Bakas, T.1    Champion, V.2
  • 4
    • 29144485926 scopus 로고    scopus 로고
    • ScoreRel CI: Software for computation of confidence intervals for commonly used score reliability coefficients
    • Barnette, J. J. (2005). ScoreRel CI: Software for computation of confidence intervals for commonly used score reliability coefficients. Educational and Psychological Measurement, 65, 980-983.
    • (2005) Educational and Psychological Measurement , vol.65 , pp. 980-983
    • Barnette, J.J.1
  • 5
    • 0033926497 scopus 로고    scopus 로고
    • United Kingdom experience with presymptomatic testing of individuals with 25% risk for Huntington's disease
    • Benjamin, C. M., & Lashwood, A. (2000). United Kingdom experience with presymptomatic testing of individuals with 25% risk for Huntington's disease. Clinical Genetics, 58, 41-49.
    • (2000) Clinical Genetics , vol.58 , pp. 41-49
    • Benjamin, C.M.1    Lashwood, A.2
  • 7
    • 0028022712 scopus 로고
    • Psychological costs and benefits of predictive testing for Huntington's disease
    • Codori A. M., & Brandt, J. (1994). Psychological costs and benefits of predictive testing for Huntington's disease. American Journal of Medical Genetics, 54(3), 174-184.
    • (1994) American Journal of Medical Genetics , vol.54 , Issue.3 , pp. 174-184
    • Codori, A.M.1    Brandt, J.2
  • 9
    • 25144481551 scopus 로고    scopus 로고
    • Development and validation of the needs inventory for caregivers of the hospitalized elderly
    • Cummings, S. M., Kelly, T., Holland, T. P., & Peterson-Hazan, S. (1998). Development and validation of the needs inventory for caregivers of the hospitalized elderly. Research on Social Work Practice, 8(1), 120-132.
    • (1998) Research on Social Work Practice , vol.8 , Issue.1 , pp. 120-132
    • Cummings, S.M.1    Kelly, T.2    Holland, T.P.3    Peterson-Hazan, S.4
  • 10
    • 0030670601 scopus 로고    scopus 로고
    • The caregiver activity survey (CAS): Development and validation of a new measure for caregivers of persons with Alzheimer's disease
    • Davis, K. L., Marin, D. B., Kane, R., Patrick, D., Peskind, E. R., Raskind, M. A., et al. (1997). The caregiver activity survey (CAS): Development and validation of a new measure for caregivers of persons with Alzheimer's disease. International Journal of Geriatric Psychiatry, 12, 978-988.
    • (1997) International Journal of Geriatric Psychiatry , vol.12 , pp. 978-988
    • Davis, K.L.1    Marin, D.B.2    Kane, R.3    Patrick, D.4    Peskind, E.R.5    Raskind, M.A.6
  • 13
    • 0037490199 scopus 로고    scopus 로고
    • Cognitive interviewing: Verbal data in the design and pretesting of questionnaires
    • Drennan, J. (2003). Cognitive interviewing: Verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing, 42(1), 57-63.
    • (2003) Journal of Advanced Nursing , vol.42 , Issue.1 , pp. 57-63
    • Drennan, J.1
  • 15
    • 34447316702 scopus 로고    scopus 로고
    • Genetics of Alzheimer's disease
    • Ertekin-Taner, N. (2007). Genetics of Alzheimer's disease. Neurology Clinics, 25(3), 611-667.
    • (2007) Neurology Clinics , vol.25 , Issue.3 , pp. 611-667
    • Ertekin-Taner, N.1
  • 17
    • 4944254013 scopus 로고    scopus 로고
    • Qualitative methods and development of clinical assessment tools
    • Gilgun, J. F. (2004). Qualitative methods and development of clinical assessment tools. Qualitative Health Research, 14(7), 1008-1019.
    • (2004) Qualitative Health Research , vol.14 , Issue.7 , pp. 1008-1019
    • Gilgun, J.F.1
  • 18
    • 0031154925 scopus 로고    scopus 로고
    • Selection and use of content experts for instrument development
    • Grant, J. S., & Davis, L. O. (1997). Selection and use of content experts for instrument development. Research in Nursing and Health, 20, 269-274.
    • (1997) Research in Nursing and Health , vol.20 , pp. 269-274
    • Grant, J.S.1    Davis, L.O.2
  • 19
    • 33749260289 scopus 로고    scopus 로고
    • A framework for the study of self-and family management of chronic conditions
    • Grey, M., Knafl, K., & McCorkle, R. (2006). A framework for the study of self-and family management of chronic conditions. Nursing Outlook, 54, 278-286.
    • (2006) Nursing Outlook , vol.54 , pp. 278-286
    • Grey, M.1    Knafl, K.2    McCorkle, R.3
  • 20
    • 33751250197 scopus 로고    scopus 로고
    • Genetics of familial and sporadic amytrophic lateral sclerosis
    • Gros-Louis, F., Gaspar, C., & Rouleau, G. A. (2006). Genetics of familial and sporadic amytrophic lateral sclerosis. Biochimica et Biophysica Acta, 1762(11-12), 956-972.
    • (2006) Biochimica et Biophysica Acta , vol.1762 , Issue.11-12 , pp. 956-972
    • Gros-Louis, F.1    Gaspar, C.2    Rouleau, G.A.3
  • 23
    • 0027480960 scopus 로고
    • A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes
    • Huntington's Disease Research Collaborative Group
    • Huntington's Disease Research Collaborative Group. (1993). A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell, 72, 971-983.
    • (1993) Cell , vol.72 , pp. 971-983
  • 24
    • 0024676578 scopus 로고
    • Caregiving hassles scale: Assessing the daily hassles of caring for a family member with dementia
    • Kinney, J. M., & Stephens, M. A. P. (1989). Caregiving hassles scale: Assessing the daily hassles of caring for a family member with dementia. The Gerontologist, 29(3), 328-332.
    • (1989) The Gerontologist , vol.29 , Issue.3 , pp. 328-332
    • Kinney, J.M.1    Stephens, M.A.P.2
  • 26
    • 33644823143 scopus 로고    scopus 로고
    • Uncommon dementia and the carer's perspective
    • LoGiudice, D., & Hassett, A. (2005). Uncommon dementia and the carer's perspective. International Psychogeriatrics, 17(Suppl.), S223-S231.
    • (2005) International Psychogeriatrics , vol.17 , Issue.SUPPL
    • LoGiudice, D.1    Hassett, A.2
  • 27
    • 0022970868 scopus 로고
    • Determination and quantification of content validity
    • Lynn, M. R. (1986). Determination and quantification of content validity. Nursing Research, 35, 382-385.
    • (1986) Nursing Research , vol.35 , pp. 382-385
    • Lynn, M.R.1
  • 30
    • 84958907452 scopus 로고
    • Caregiving and the experience of subjective and objective burden
    • Montgomery, R. J. V., Bonyea, J. G., & Hooyman, N. R. (1985). Caregiving and the experience of subjective and objective burden. Family Relations, 34, 19-26.
    • (1985) Family Relations , vol.34 , pp. 19-26
    • Montgomery, R.J.V.1    Bonyea, J.G.2    Hooyman, N.R.3
  • 31
    • 0033051689 scopus 로고    scopus 로고
    • Measuring both negative and positive reactions to giving care to cancer patients: Psychometric qualities of the Caregiver Reaction Assessment (CRA)
    • Nijboer, C., Triemstra, M., Tempelaar, R., Sanderman, R., & vandenBos, G. A. M. (1999). Measuring both negative and positive reactions to giving care to cancer patients: Psychometric qualities of the Caregiver Reaction Assessment (CRA). Social Science and Medicine, 48, 1259-1269.
    • (1999) Social Science and Medicine , vol.48 , pp. 1259-1269
    • Nijboer, C.1    Triemstra, M.2    Tempelaar, R.3    Sanderman, R.4    vandenBos, G.A.M.5
  • 32
    • 0024785449 scopus 로고
    • Application of a multidimensional Caregiver Burden Inventory
    • Novak, M., & Guest, C. (1989). Application of a multidimensional Caregiver Burden Inventory. Gerontologist, 29, 798-803.
    • (1989) Gerontologist , vol.29 , pp. 798-803
    • Novak, M.1    Guest, C.2
  • 34
    • 33644843402 scopus 로고    scopus 로고
    • Cognitive changes in Huntington's disease
    • Paulsen, J. S., & Conybeare, R. A. 2005. Cognitive changes in Huntington's disease. Advances in Neurology, 96, 209-225.
    • (2005) Advances in Neurology , vol.96 , pp. 209-225
    • Paulsen, J.S.1    Conybeare, R.A.2
  • 35
    • 0031151167 scopus 로고    scopus 로고
    • Development and testing of a measure of perceived caregiver rewards in adults
    • Picot, S. J. F., Youngblut, J. A., & Zeller, R. (1997). Development and testing of a measure of perceived caregiver rewards in adults. Journal of Nursing Measurement, 5(1), 33-52.
    • (1997) Journal of Nursing Measurement , vol.5 , Issue.1 , pp. 33-52
    • Picot, S.J.F.1    Youngblut, J.A.2    Zeller, R.3
  • 37
    • 0029007707 scopus 로고
    • Exploration of the effects of predictive testing for Huntington disease on intimate relationships
    • Quaid, K. A., & Wesson M. K. (1995). Exploration of the effects of predictive testing for Huntington disease on intimate relationships. American Journal of Medical Genetics, 57(1), 46-51.
    • (1995) American Journal of Medical Genetics , vol.57 , Issue.1 , pp. 46-51
    • Quaid, K.A.1    Wesson, M.K.2
  • 38
    • 0020585425 scopus 로고
    • Validation of a Caregiver Strain Index
    • Robinson, B. C. (1983) Validation of a Caregiver Strain Index. Journal of Gerontology, 38(3), 344-348.
    • (1983) Journal of Gerontology , vol.38 , Issue.3 , pp. 344-348
    • Robinson, B.C.1
  • 39
    • 16244422307 scopus 로고    scopus 로고
    • Toward a biopsychosocial model for 21st century genetics
    • Rolland, J. S., & Williams, J. K. (2006). Toward a biopsychosocial model for 21st century genetics. Family Process, 44(1), 2-24.
    • (2006) Family Process , vol.44 , Issue.1 , pp. 2-24
    • Rolland, J.S.1    Williams, J.K.2
  • 41
    • 0034241415 scopus 로고    scopus 로고
    • Whatever happened to qualitative description?
    • Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing and Health, 23(4), 334-340.
    • (2000) Research in Nursing and Health , vol.23 , Issue.4 , pp. 334-340
    • Sandelowski, M.1
  • 42
    • 0031863380 scopus 로고    scopus 로고
    • Multidimensional measures of caregiver burden: A replication and extension of the caregiver burden inventory
    • Schwiebert, V. L., Gieordano, F., Zhang, G., & Sealander, K. (1998). Multidimensional measures of caregiver burden: A replication and extension of the caregiver burden inventory. Journal of Mental Health and Aging, 4(1), 47-57.
    • (1998) Journal of Mental Health and Aging , vol.4 , Issue.1 , pp. 47-57
    • Schwiebert, V.L.1    Gieordano, F.2    Zhang, G.3    Sealander, K.4
  • 43
    • 0033194542 scopus 로고    scopus 로고
    • Development and testing of the Family Caregiving Consequences Inventory for home nursing assessment in Taiwan
    • Shyu, Y. L., Lee, H., & Chen, M. (1999). Development and testing of the Family Caregiving Consequences Inventory for home nursing assessment in Taiwan. Journal of Advanced Nursing, 30(3), 646-654.
    • (1999) Journal of Advanced Nursing , vol.30 , Issue.3 , pp. 646-654
    • Shyu, Y.L.1    Lee, H.2    Chen, M.3
  • 44
    • 0033989352 scopus 로고    scopus 로고
    • Impact of genetic testing for Huntington disease on the family system
    • Sobel, S. K., & Cowan, D. B. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90(1), 49-59.
    • (2000) American Journal of Medical Genetics , vol.90 , Issue.1 , pp. 49-59
    • Sobel, S.K.1    Cowan, D.B.2
  • 45
    • 77952935260 scopus 로고    scopus 로고
    • A new scale to measure a family member's perception of community health care services for persons with Huntington disease
    • Sousa, V., Williams, J. K., Barnette, J. J., & Reed, D. A new scale to measure a family member's perception of community health care services for persons with Huntington disease. Journal of Evaluation and Clinical Practice, 16(3), 470-475.
    • Journal of Evaluation and Clinical Practice , vol.16 , Issue.3 , pp. 470-475
    • Sousa, V.1    Williams, J.K.2    Barnette, J.J.3    Reed, D.4
  • 46
    • 34447096609 scopus 로고    scopus 로고
    • Clinical, genetic, and pathologic characteristics of patients with Frontotemporal dementia and progranulin mutations
    • Van Deerlin, V. M., Wood, E. M., Moore, P., Yuan, W., Forman, M. S., Clark, C. M., et al. (2007). Clinical, genetic, and pathologic characteristics of patients with Frontotemporal dementia and progranulin mutations Archives of Neurology, 64(8), 1148-1153.
    • (2007) Archives of Neurology , vol.64 , Issue.8 , pp. 1148-1153
    • Van Deerlin, V.M.1    Wood, E.M.2    Moore, P.3    Yuan, W.4    Forman, M.S.5    Clark, C.M.6
  • 49
    • 0036779765 scopus 로고    scopus 로고
    • Capturing the insights of family caregivers: Survey item generation with a coupled interview/focus group process
    • Wackerbarth, S. B., Streams, M. E., & Smith, M. K. (2002). Capturing the insights of family caregivers: Survey item generation with a coupled interview/focus group process. Qualitative Health Research, 12(8), 1141-1154.
    • (2002) Qualitative Health Research , vol.12 , Issue.8 , pp. 1141-1154
    • Wackerbarth, S.B.1    Streams, M.E.2    Smith, M.K.3
  • 50
    • 0642370967 scopus 로고    scopus 로고
    • Using focus groups to develop culturally relevant instruments
    • Willgerodt, M. A. (2003). Using focus groups to develop culturally relevant instruments. Western Journal of Nursing Research, 25(7), 798-814.
    • (2003) Western Journal of Nursing Research , vol.25 , Issue.7 , pp. 798-814
    • Willgerodt, M.A.1
  • 51
    • 46249104711 scopus 로고    scopus 로고
    • I'm like you: Establishing, confirming and contesting common ground in focus groups with Huntington disease caregivers
    • Williams, J. K., & Ayres, L. (2007). I'm like you: Establishing, confirming and contesting common ground in focus groups with Huntington disease caregivers. Journal of Research in Nursing, 12(6), 655-664.
    • (2007) Journal of Research in Nursing , vol.12 , Issue.6 , pp. 655-664
    • Williams, J.K.1    Ayres, L.2


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