Development of the Huntington disease family concerns and strategies survey from focus group data.
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.
Williams
Janet K
JK
College of Nursing, University of Iowa, Iowa City, IA 52242, USA. janet-williams@uiowa.edu
Barnette
J Jackson
JJ
Reed
David
D
Sousa
Valmi D
VD
Schutte
Debra L
DL
McGonigal-Kenney
Meghan
M
Jarmon
Lori
L
Phillips
Emily
E
Tripp-Reimer
Toni
T
Paulsen
Jane S
JS
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
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