Authors:
Soraia Teles
1
;
2
;
Constança Paúl
2
;
1
;
João Viana
3
;
2
;
Alberto Freitas
3
;
2
;
Sara Alves
2
;
4
;
Óscar Ribeiro
2
;
5
and
Ana Ferreira
2
;
3
Affiliations:
1
Department of Behavioral Sciences, School of Medicine and Biomedical Sciences University of Porto (ICBAS-UP), Rua de Jorge Viterbo Ferreira, 228, 4050-313 Porto, Portugal
;
2
RISE-Health, Rua Dr. Plácido da Costa, 4200-450, Porto, Portugal
;
3
Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS), Faculty of Medicine of the University of Porto, Rua Dr. Plácido da Costa, 4200-450, Porto, Portugal
;
4
Santa Casa de Misericórdia de Riba D’Ave/CIDIFAD - Centro de Investigação, Diagnóstico, Formação e Acompanhamento das Demências, Tv. Conde de Riba de Ave, 4765-288 Riba d'Ave, Portugal
;
5
Department of Education and Psychology, University of Aveiro, 3810-198, Aveiro, Portugal
Keyword(s):
Dementia, Informal Caregivers, eHealth Intervention, Remote Measurement Tool.
Abstract:
eHealth programmes are increasingly explored to improve access to training and support for informal caregivers of people with dementia (PwD). iSupport-Portugal is an eHealth programme for these caregivers, culturally adapted from the World Health Organization's original iSupport. iSupport-Portugal is the only version being explored internationally as a remote measurement tool (RMT) to collect sociodemographic, health and psychosocial data on care dyads. The aim of this paper is to discuss the challenges and lessons learned in the deployment of iSupport-Portugal. Four studies were conducted, including a mixed-methods cross-sectional study of informal dementia caregivers' attitudes and needs towards eHealth interventions (N=157), a usability study (N=17), a pilot randomised controlled trial (N=42), and an ongoing prospective cohort study (N=173). Insights and recommendations are provided on user uptake of eHealth interventions and user-centred approaches, ethics and data privacy consid
erations, study design for usability and effectiveness evaluation, and the use of platform data for research. This paper provides insights relevant to researchers, developers, and designers involved in implementing digital solutions for caregivers of PwD and other audiences. To realise the full potential of eHealth interventions and RMTs, it is imperative to establish guidelines that address the ethical, technological, and methodological complexities of the field.
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