title: Development of the Huntington disease family concerns and strategies survey from focus group data.
abstract: Health concerns and management strategies among families of young and middle-age adults with Huntington's disease (HD) are unknown. This study developed and tested psychometric properties of the Huntington Disease Family Concerns and Strategies Survey (HDFCSS). Focus group data from 91 adult family members were used to develop content. Content analysis yielded four domains that were transferred into Personal, Person With HD, Community Health Care Services, and Strategies scales. Focus group data, expert validation, and cognitive interviews demonstrated survey content validity. Cronbach's alpha internal consistency coefficients for the scales were 0.83 or above. The measure can be used to generate reliable and valid data to identify adult family members' health-related concerns and management strategies for themselves and persons with HD.
authors.affiliation: College of Nursing, University of Iowa, Iowa City, IA 52242, USA. janet-williams@uiowa.edu
authors.forename: Janet K
authors.initials: JK
authors.lastname: Williams
authors.forename: J Jackson
authors.initials: JJ
authors.lastname: Barnette
authors.forename: David
authors.initials: D
authors.lastname: Reed
authors.forename: Valmi D
authors.initials: VD
authors.lastname: Sousa
authors.forename: Debra L
authors.initials: DL
authors.lastname: Schutte
authors.forename: Meghan
authors.initials: M
authors.lastname: McGonigal-Kenney
authors.forename: Lori
authors.initials: L
authors.lastname: Jarmon
authors.forename: Emily
authors.initials: E
authors.lastname: Phillips
authors.forename: Toni
authors.initials: T
authors.lastname: Tripp-Reimer
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
mesh_terms: D000328:Adult; D000368:Aged; D002170:Canada; D005190:Family / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D006816:Huntington Disease / Q000451:nursing* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D014481:United States
references.citation: Nurs Outlook. 2006 Sep-Oct;54(5):278-86
references.pmid: 17027605
references.citation: J Adv Nurs. 2003 Apr;42(1):57-63
references.pmid: 12641812
references.citation: Am J Alzheimers Dis Other Demen. 2003 Jan-Feb;18(1):39-48
references.pmid: 12613133
references.citation: Am J Med Genet. 1994 Sep 15;54(3):174-84
references.pmid: 7810575
references.citation: J Adv Nurs. 1999 Sep;30(3):646-54
references.pmid: 10499222
references.citation: Res Nurs Health. 1997 Jun;20(3):269-74
references.pmid: 9179180
references.citation: Gerontologist. 1989 Jun;29(3):328-32
references.pmid: 2759453
references.citation: West J Nurs Res. 2003 Nov;25(7):798-814
references.pmid: 14596180
references.citation: J Nurs Meas. 1997 Summer;5(1):33-52
references.pmid: 9505468
references.citation: Nurs Res. 1999 Sep-Oct;48(5):250-9
references.pmid: 10494909
references.citation: Qual Health Res. 2002 Oct;12(8):1141-54
references.pmid: 12365593
references.citation: J Gerontol. 1983 May;38(3):344-8
references.pmid: 6841931
references.citation: Res Nurs Health. 2007 Apr;30(2):224-34
references.pmid: 17380524
references.citation: J Adv Nurs. 2009 Apr;65(4):789-98
references.pmid: 19228233
references.citation: J Clin Exp Neuropsychol. 2007 May;29(4):365-76
references.pmid: 17497560
references.citation: Clin Genet. 2000 Jul;58(1):41-9
references.pmid: 10945660
references.citation: Am J Med Genet. 2000 Jun 12;96(3):353-9
references.pmid: 10898914
references.citation: Am J Med Genet. 2000 Jan 3;90(1):49-59
references.pmid: 10602118
references.citation: Qual Health Res. 2004 Sep;14(7):1008-19
references.pmid: 15296669
references.citation: Am J Med Genet. 1995 May 22;57(1):46-51
references.pmid: 7645597
references.citation: Fam Process. 2005 Mar;44(1):3-24
references.pmid: 15807075
references.citation: Am J Med Genet B Neuropsychiatr Genet. 2007 Jul 5;144B(5):636-41
references.pmid: 17219384
references.citation: Res Nurs Health. 2000 Aug;23(4):334-40
references.pmid: 10940958
references.citation: Neuropsychiatry Neuropsychol Behav Neurol. 2001 Oct-Dec;14(4):219-26
references.pmid: 11725215
references.citation: Neurol Clin. 2007 Aug;25(3):611-67, v
references.pmid: 17659183
references.citation: Int Psychogeriatr. 2005;17 Suppl 1:S223-31
references.pmid: 16240492
references.citation: Eur J Hum Genet. 2005 Sep;13(9):1077-85
references.pmid: 15999117
references.citation: Arch Neurol. 2007 Aug;64(8):1148-53
references.pmid: 17698705
references.citation: Soc Sci Med. 1999 May;48(9):1259-69
references.pmid: 10220024
references.citation: Neurology. 2001 Apr 24;56(8):1052-8
references.pmid: 11320178
references.citation: Biochim Biophys Acta. 2006 Nov-Dec;1762(11-12):956-72
references.pmid: 16503123
references.citation: Adv Neurol. 2005;96:209-25
references.pmid: 16385769
references.citation: Cell. 1993 Mar 26;72(6):971-83
references.pmid: 8458085
references.citation: Cogn Behav Neurol. 2007 Sep;20(3):149-56
references.pmid: 17846513
references.citation: Gerontologist. 1989 Dec;29(6):798-803
references.pmid: 2516000
references.citation: Nurs Res. 1986 Nov-Dec;35(6):382-5
references.pmid: 3640358
references.citation: Gerontologist. 1991 Feb;31(1):76-83
references.pmid: 2007478
references.citation: J Eval Clin Pract. 2010 Jun;16(3):470-5
references.pmid: 20337834
references.citation: Int J Geriatr Psychiatry. 1997 Oct;12(10):978-88
references.pmid: 9395929