Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 19, 2024
Date Accepted: Sep 10, 2024
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Designing and Evaluating IT Applications for Informal Caregivers: Scoping Review
ABSTRACT
Background:
Informal caregivers, often family members or friends, play a crucial role in supporting individuals with chronic illnesses, disabilities, or age-related needs. However, the demands of caregiving can be overwhelming, leading to stress, burnout, and negative impacts on caregivers' well-being. Information technology (IT) applications have emerged as potential solutions to support informal caregivers, but their design and evaluation often lack a comprehensive understanding of caregivers' needs and preferences. By understanding caregivers' perspectives on these issues, the review aims to inform the development of more effective and user-centered IT solutions that truly support their needs.
Objective:
The purpose of this study was to conduct a scoping review to outline the design recommendations for IT applications gathered from informal caregivers. Additionally, the study presented the evaluations of the use of IT applications by informal caregivers.
Methods:
A 5-step scoping review methodology was utilized to map relevant literature in the following manner: (1) research question identification, (2) relevant studies identification, (3) selection of pertinent studies for review, (4) data charting from selected literature, and (5) summarization and reporting of results. A structured search was conducted across PubMed, Scopus, IEEE Digital Library, Web of Science, and ACM Digital Library databases. Additionally, reference list hand searches and keyword searches in Google Scholar were also undertaken. Inclusion criteria comprised research articles (journal and conference) focusing on IT applications tailored for informal caregivers, primarily qualitative studies. Two reviewers independently identified articles for review and extracted data. Conflicts were resolved through discussion, with a third reviewer consulted if consensus could not be attained. Thematic analysis was employed to analyze this data.
Results:
A total of 82 articles were selected for the scoping review – 44 related to design and 38 for evaluation of IT applications. Six overarching themes emerged related to designing IT applications, namely – information access, support systems, streamlining care related tasks, fostering informal caregiver’s wellbeing, communication with formal health care professionals and task support. Furthermore, three broad themes emerged related to the evaluation of IT applications for informal caregivers namely – facilitators for using IT applications, barriers for using IT applications and suggestions for improving IT applications for informal caregivers.
Conclusions:
To our knowledge, this is the first study to map the literature on the design and evaluation of IT applications for informal caregivers. This scoping review outlines current practices and recommendations for designing and evaluating the use of IT applications for informal caregivers. It identifies six key design themes and three evaluation themes, offering valuable insights for future development in this field. These findings provide a roadmap for enhancing user-centric IT solutions in informal caregiver support technologies.
Citation
