Review and selection of online resources for carers of frail adults or older people in five european countries: Mixed-methods study

Roberta Papa, Areti Efthymiou, Giovanni Lamura, Flavia Piccinini, Giulia Onorati, Evridiki Papastavrou, Theologia Tsitsi, Giulia Casu, Licia Boccaletti, Alessandra Manattini, Rita Seneca, Carlos Vaz De Carvalho, Rita Durão, Francesco Barbabella, Frida Andréasson, Lennart Magnusson, Elizabeth Hanson

Research output: Contribution to journalReview articlepeer-review

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.

Original languageEnglish
Article numbere14618
JournalJMIR mHealth and uHealth
Volume8
Issue number6
DOIs
Publication statusPublished - Jun 2020

Keywords

  • Informal carers
  • Mobile apps
  • Reliability
  • Usability
  • Websites

ASJC Scopus subject areas

  • Health Informatics

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