Designing and Evaluating IT Applications for Informal Caregivers: Scoping Review (Preprint)
Authors: Premanandan Shweta , Ahmad Awais , Cajander Åsa , Ågerfalk Pär , van Gemert-Pijnen Lisette 
Published: October 2024

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. 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, this review aimed to inform the development of more effective and user-centered IT solutions that truly support caregivers’ needs.

OBJECTIVE

The purpose of this study was to conduct a scoping review to outline design recommendations for IT applications gathered from informal caregivers. In addition, this study presents evaluations of the use of IT applications by informal caregivers.

METHODS

A five-step scoping review methodology was used to map relevant literature in the following manner: (1) research question identification, (2) relevant study identification, (3) selection of pertinent studies for review, (4) data charting from the selected literature, and (5) summarization and reporting of results. A structured search was conducted across the PubMed, Scopus, IEEE Xplore Digital Library, Web of Science, and ACM Digital Library databases. In addition, reference list hand searches and keyword searches in Google Scholar were undertaken. The 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 the data. Conflicts were resolved through discussion, with a third reviewer consulted if consensus could not be attained. Thematic analysis was used to analyze the data.

RESULTS

A total of 82 articles were selected for the scoping review—44 (54%) related to design and 39 (48%) related to evaluation of IT applications. Six overarching themes emerged related to designing IT applications: information access, support systems, streamlining care-related tasks, fostering informal caregivers’ well-being, communication with formal health care professionals, and task support. Furthermore, 3 broad themes emerged related to the evaluation of IT applications for informal caregivers: facilitators of using IT applications, barriers to 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 6 key design themes and 3 evaluation themes, offering valuable insights for future development in this field. These findings provide a road map for enhancing user-centric IT solutions in informal caregiver support technologies.

INTERNATIONAL REGISTERED REPORT

RR2-10.2196/47650