Online training and support program (iSupport) for informal dementia caregivers: protocol for an intervention study in Portugal

Abstract

Background: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes. Methods: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an educationonly e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to selfadministered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-totreat (ITT) protocol. Discussion: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere.

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal

“…Future research with iSupport also includes a subsequent intervention study to determine the efficacy of the Portuguese version of iSupport in decreasing caregivers' burden as well as symptoms of depression and anxiety (Teles et al, 2020). In what concerns the effectiveness of culturally adapted vs. non-adapted interventions on clinical outcomes, the evidence from several systematic reviews and meta-analysis is mixed (Benish et al, 2011;Cabral & Smith, 2011;Chowdhary et al, 2014;Cuijpers et al, 2008;Griner & Smith, 2006;Hall et al, 2016;Hodge et al, 2010;Huey & Polo, 2008;van Loon et al, 2013), with effect sizes ranging from almost zero (e.g.…”

Effects of e-Health Training and Social Support Interventions for Informal Caregivers of People with Dementia—A Narrative Review

“…The methodology of these interventions ranges from programs based on chat groups with videos and teaching material [49] to web-based interventions with information modules, chats, and videoconferences with professionals and other ICs [33,[50][51][52][53][54][55][56][57][58][59]. One of these programs, developed by the WHO (iSupport), has been translated into several different languages to adapt it to different media and cultures [28,60].…”

User feedback and usability testing of an online training and support program for dementia carers

“…Finally, while findings from this study with respect to participants' willingness to use the program and anticipated benefits were encouraging, further research endeavours are needed. Future research includes collecting usage data (e.g., number of visits), and conducting an effectiveness study (see ( Teles et al, 2020d ) for the RCT protocol).…”