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Appl Clin Inform 2017; 08(01): 191-205
DOI: 10.4338/ACI-2016-07-RA-0122
Research Article
Schattauer GmbH

Getting what they need when they need it

Identifying barriers to information needs of family caregivers to manage dementia-related behavioral symptoms
Nicole E. Werner
1  Department of Industrial and Systems Engineering, College of Engineering, University of Wisconsin-Madison, Madison, Wisconsin
2  Center for Quality and Productivity Improvement, College of Engineering, University of Wisconsin-Madison, Madison, Wisconsin
3  Wisconsin Institute for Discovery, University of Wisconsin-Madison, Madison, Wisconsin
,
Barbara Stanislawski
4  Department of Psychiatry, University of Michigan
,
Katherine A. Marx
5  School of Nursing, Johns Hopkins University
6  Center for Innovative Care in Aging, Johns Hopkins University
,
Daphne C. Watkins
4  Department of Psychiatry, University of Michigan
,
Marissa Kobayashi
5  School of Nursing, Johns Hopkins University
6  Center for Innovative Care in Aging, Johns Hopkins University
,
Helen Kales
4  Department of Psychiatry, University of Michigan
,
Laura N. Gitlin
4  Department of Psychiatry, University of Michigan
5  School of Nursing, Johns Hopkins University
7  Department of Psychiatry (Joint Appointment), Johns Hopkins School of Medicine
› Author Affiliations Funding This research was supported by funding from the National Institutes of Health (NIH Grant #5R01NR014200-03). The funders had no role in any of the following activities: design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.
Further Information

Publication History

Received: 24 July 2016

Accepted: 09 February 2016

Publication Date:
20 December 2017 (online)

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Summary

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. Objectives: This study used a sociotechnical systems approach to identify barriers to meeting care-givers’ 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.

Keywords

Consumer health informatics - family caregivers - dementia - Alzheimer’s disease - sociotechnical aspects of information technology - information seeking