iSupport-Portugal

iSupport is a new support and training program for informal caregivers of people with dementia, made available over the internet. It was developed in 2017 by the World Health Organization (WHO), and this organization granted an exclusive license to the Institute of Biomedical Sciences Abel Salazar of the University of Porto (ICBAS-UP) to adapt the program to the Portuguese population. iSupport-Portugal is the result of such adaptation work, conducted by ICBAS and CINTESIS in partnership with the Alzheimer Portugal Association and, internationally, with the World Health Organization.

Informal caregivers of people living with dementia are often exposed to a variety of stressors and may see their physical and mental health negatively affected in care delivery. These caregivers are more likely to experience overload, as well as anxious and depressive symptoms when compared to both the general population and caregivers of people living with other chronic diseases.

iSupport is an online program designed by the World Health Organization (WHO) in 2017, with the purpose of offering education, skills training, and support to informal caregivers of people with dementia. The program consists of 23 sessions, spread over 5 modules, and the intervention plan can be customized according to the needs, preferences, and availability of the caregiver. It features interactive exercises with immediate feedback and the ability to register and monitor your mood over time. iSupport uses problem-solving techniques and strategies used in cognitive-behavioral interventions.

The iSupport-Portugal project aims at translation, cultural adaptation, usability evaluation, and effectiveness study of this innovative intervention program. The works are led by ICBAS-UP and CINTESIS, in partnership with the Alzheimer Portugal Association and, internationally, with the WHO Department of Mental Health and Psychoactive Substance Abuse.

The first phase of the iSupport-Portugal project (2018-2019) consists of conducting a study of translation and cultural adaptation of the program. The development of the Portuguese version takes place in five stages that include i. needs assessment; ii. translation of content by an official translator and review of the translation by health professionals; iii. cultural adaptation; iv. independent evaluation of the contents by a panel of experts; and v. verification of the fidelity of the adaptation process by WHO.

The second phase of the project (2019-2020) consists of the study of usability and the user experience with the iSupport-Portugal program.

The third and final phase (2020-2022) consists of the implementation of an intervention study that aims to determine the effectiveness of the Portuguese version of the iSupport program in reducing perceived burden, anxious and depressive symptoms, and in increasing quality of life, positive aspects of providing care and general self-efficacy, compared to a basic educational intervention (control condition) (ClinicalTrials.gov, NCT04104568, registered on September 26, 2019).

The conclusions of the iSupport-Portugal project will be relevant in the context of research, practice, and political/strategic decision making within the scope of support services for informal caregivers of people with dementia. The results will inform about the feasibility, acceptance, and effectiveness of a digital intervention program for this population, with unique characteristics in the national context and with purpose aligned with the Health Strategy in the Area of Dementia.

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48 months

Soraia Teles, Constança Paúl, Ana Margarida Ferreira, Milaydis Sosa Napolskij

https://www.isupport-portugal.pt/home

iSupport-Portugal is being evaluated for its effectiveness and, for that reason, registration on the platform is subject to an access code. At the moment, this code is only available to caregivers participating in the program’s effectiveness study.