Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study

Abstract

Background Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. Objective This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). Methods A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. Results From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer’s wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. Conclusions The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Digital Adoption by an Organization Supporting Informal Caregivers During COVID-19 Pandemic Showing Impact on Service Use, Organizational Performance, and Carers’ Well-Being: Retrospective Population-Based Database Study With Embedded User Survey

“…Before the pandemic, researchers reported that the uptake of web-based services by older adults in the United Kingdom remained relatively low, despite their potential benefits [ 24 ]. A European examination of web-based services available to support informal carers also found a lack of reliability and usability [ 25 ]. A qualitative study of the views of caregivers on suitable technologies to assist their caregiving identified similar themes to this larger study, in particular that digital technology needs to be tailored to users’ needs in order to ensure adoption [ 26 ].…”

Construction of a Classifying Technology for Geriatric Emergency Care for Caregivers of the Elderly

“…Caregivers still need training and qualification with regard to technological resources and access to health sites. In the study by Papa et al (2020), who investigated the proportion of technological resources aimed at caregivers of the elderly with specific neurodegenerative diseases, only 17% included this group of professionals and most of the population of caregivers studied did not even have prior knowledge of any technological resource. Although the virtual scenario demonstrates greater accessibility to applications through smartphones, for example, resistance from some groups is noticeable.…”

Personalized Technological Support for Informal Caregivers of Older People with Dementia: A Co-Design Approach Involving Potential End Users and Healthcare Professionals in Three Focus Groups in Italy

“…In the co-design process, researchers and EUs work together to find the best solutions for developing the final product. Other authors [30] have confirmed that applications (apps) and websites could support ICs; but to develop good-quality online resources, these should be co-designed in collaboration with EUs, who also need to acquire the necessary digital skills to use such tools. When the process involves healthcare professionals (HPs) as well as ICs and PwD (who are both EUs), it creates an atmosphere of common and global knowledge about crucial aspects of living with dementia.…”