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.

Objectives 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.