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

Soraia Teles, Ana Ferreira, Katrin Seeher, Stéfanie Fréel, Constança Paúl, Soraia Teles, Ana Ferreira, Katrin Seeher, Stéfanie Fréel, Constança Paúl

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 education-only 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 self-administered 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-to-treat (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.

Trial registration: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.

Keywords: Informal caregivers (IC); Intervention study; Online training and support; People with dementia (PwD).

Conflict of interest statement

All authors declare that they have no competing interests or financial disclosures.

Figures

Fig. 1
Fig. 1
Participant selection flowchart
Fig. 2
Fig. 2
Overview of the iSupport online self-help training and support program structure and contents. Adapted from iSupport Adaptation and Implementation Guide (unpublished observations; Pot, 2018). For illustrative purposes the English version of module and lesson titles is presented

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