title: Getting what they need when they need it. Identifying barriers to information needs of family caregivers to manage dementia-related behavioral symptoms.
abstract: BACKGROUND
  Consumer health informatics (CHI) such as web-based applications may provide the platform for enabling the over 15 million family caregivers of patients with Alzheimer's Disease or related dementias the information they need when they need it to support behavioral symptom management. However, for CHI to be successful, it is necessary that it be designed to meet the specific information needs of family caregivers in the context in which caregiving occurs. A sociotechnical systems approach to CHI design can help to understand the contextual complexities of family caregiving and account for those complexities in the design of CHI for family caregivers.
  
  
  OBJECTIVE
  This study used a sociotechnical systems approach to identify barriers to meeting caregivers' information needs related to the management of dementia-related behavioral symptoms, and to derive design implications that overcome barriers for caregiver-focused web-based platforms. We have subsequently used these design implications to inform the development of a web-based platform, WeCareAdvisor,TM which provides caregivers with information and an algorithm by which to identify and manage behavioral symptoms for which they seek management strategies.
  
  
  METHODS
  We conducted 4 focus groups with family caregivers (N=26) in a Midwestern state. Qualitative content analysis of the data was guided by a sociotechnical systems framework.
  
  
  RESULTS
  We identified nine categories of barriers that family caregivers confront in obtaining needed information about behavioral symptom management from which we extrapolated design implications for a web-based platform. Based on interactions within the sociotechnical system, three critical information needs were identified: 1) timely access to information, 2) access to information that is tailored or specific to caregiver's needs and contexts, and 3) usable information that can directly inform how caregivers' manage behaviors.
  
  
  CONCLUSIONS
  The sociotechnical system framework is a useful approach for identifying information needs of family caregivers to inform design of web-based platforms that are user-centered.
authors.affiliation: Nicole E. Werner, Ph.D., Assistant Professor, Department of Industrial and Systems Engineering, Discovery Fellow, Living Environments Laboratory, Wisconsin Institute for Discovery, Affiliate Faculty, Center for Quality and Productivity Improvement, Affiliate Faculty, William S. Middleton Memorial VA Hospital, University of Wisconsin-Madison , 1513 University Avenue Madison, WI 53706, Phone: 608.890.2578, Fax: 608.262.8454, Email: nwerner3@wisc.edu.
authors.forename: Nicole E
authors.initials: NE
authors.lastname: Werner
authors.forename: Barbara
authors.initials: B
authors.lastname: Stanislawski
authors.forename: Katherine A
authors.initials: KA
authors.lastname: Marx
authors.forename: Daphne C
authors.initials: DC
authors.lastname: Watkins
authors.forename: Marissa
authors.initials: M
authors.lastname: Kobayashi
authors.forename: Helen
authors.initials: H
authors.lastname: Kales
authors.forename: Laura N
authors.initials: LN
authors.lastname: Gitlin
mesh_terms: D000328:Adult; D000368:Aged; D001526:Behavioral Symptoms; D017028:Caregivers; D003704:Dementia / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008490:Medical Informatics; D008875:Middle Aged; D020380:Needs Assessment; D055815:Young Adult
keywords: Alzheimer’s disease; Consumer health informatics; dementia; family caregivers; information seeking; sociotechnical aspects of information technology