Background: iSupport is an online program developed by the World Health Organization to provide education, skills training, and social support to informal carers of persons with dementia. This pilot study examines the feasibility of the protocol for a main effectiveness trial of iSupport-Portugal and explores how the intervention and control arms compare over time on well-being outcomes.Methods: A mixed-methods experimental parallel between-group design with two arms is followed. Participants were recruited nationwide, by referral or advertising, through the National Alzheimer’s Association. Inclusion criteria are being Portuguese adults, providing e-consent, providing unpaid care to someone with dementia for at least 6 months, experiencing relevant scores on burden (≥ 21 on ZBI) or depression or anxiety (≥ 8 on HADS), and using webpages autonomously. Participants were consecutively randomized to receive iSupport-Portugal or an education-only e-book and were not blinded to group assignment. Data were collected online with self-administered instruments, at baseline, 3 and 6 months after. Outcomes comprise caregiver burden, depression, anxiety, QoL, positive aspects of caregiving, and self-efficacy. Generalized estimating equations were used to estimate group, time, and group-by-time effects. Intervention engagement data were extracted from iSupport’s platform. Semi-structured interviews were conducted.Results: Forty-two participants were allocated to the intervention (N = 21) and control (N = 21) arms. Participation (78.1%) and retention rates (73.8%) were fair. More carers in the control arm completed the study (N = 20, 95.2%) than in the intervention arm (N = 11; 52.4%) (χ² = 9.98,p = .002). Non-completers were younger, spent less time caring, and scored higher on anxiety. Among carers in the intervention arm, the average attendance rate was of 53.7%. At post-test 38.9% of participants still used iSupport; the remainder participants interrupted use within 2 weeks (Mdn). For per-protocol analyses, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2 = 6.17,p = .046) and for environmental QoL (Waldχ² = 7.06,p = .029). Those effects were not observed in intention-to-treat analyses adjusted for age. Interviewees from the intervention arm (N = 12) reported positive results of iSupport on knowledge and on experiencing positive feelings. No adverse effects were reported.Conclusions: This study provides information for a forthcoming full-scale effectiveness trial, as on the acceptability and potential results of iSupport-Portugal. iSupport is suggested as a relevant resource for Portuguese carers.Trial registration: ClinicalTrials.gov,NCT04104568. 26/09/2019.

EHealth interventions have been explored to provide convenient support and training to informal dementia carers. Design and usability issues may however hinder user acceptance of Web-based interventions. iSupport is an online program developed by World Health Organization (WHO) to support informal dementia carers. This study gathers user-feedback and evaluates the usability of the European-Portuguese version of iSupport. A mixed-methods study was conducted. Two focus groups discussions (n = 15) and 15 usability test sessions were conducted with carers and health/social support professionals to collect data on user satisfaction and requirements on the program's contents and Web interface. The usability testing protocol comprised pre/post-test surveys, a structured interview and observation of task performance in the Web platform. Content analysis of text data was performed by two independent coders. Success rates were superior to 80% for most tasks. An average score of 89.5 on the System Usability Scale demonstrated an excellent perception of the program's usability. The program was perceived as trustworthy, and participants were globally satisfied with its aesthetics and easiness of use. Feedback and personalization were valued functional requirements, while no consensus was found for mood self-assessment or professional/peer interaction features. Lessons were considered culturally fit, thematically pertinent, and comprehensive. Suggestions for improvement were wide-ranging from program's layout to accessibility, usability, functional requirements, content format and lessons' themes. This study derives user requirements for an evidence-based program for dementia carers. Both the study findings and usability assessment methodology can be imported to the development of similar programs worldwide.

Background: Informal caregivers of people with dementia often struggle with several stressors, and their mental and physical health can be negatively affected by providing care. iSupport is an online self-help programme designed by the World Health Organization to provide education, skills training, and support to those caregivers. Purpose: This paper describes the development of an adapted version of iSupport to the Portuguese culture. We present the adaptation process, methods used and results for the country-specific version. Methods: The adaptation of iSupport was operationalised in five steps: needs assessment; content translation by an authorised translator and technical accuracy check by health professionals; cultural adaptation; independent appraisal of contents by an expert panel; and fidelity check by programme authors. Results: Findings indicated the adjustments needed in the original iSupport contents. Overall, 323 text excerpts were proposed to adaptation, comprising semantic and conceptual equivalence of expressions, and adjustments to cultural habits, customs, traditions, local resources, and practices. The expert panel identified the need to reformulate definitions, designations, recommendations, and case studies to fine-tune the original contents to local knowledge and practices. Most adaptations were considered to be in line with the core concepts of the original programme. Conclusions: iSupport is an innovative tool capturing the attention of several organisations around the world interested in translating, adapting, and using the programme. This paper is the first describing the methodological approach for culturally adapting iSupport, constituting an essential resource for those aiming to replicate the process or culturally adapting evidence-based interventions. Tailoring iSupport to the Portuguese context was critical to accommodate the cultural experiences of the target group as well as the knowledge, theoretical approaches, and practices of local professionals. The European-Portuguese version of iSupport introduces the adjustments needed to implement a useful new intervention programme aimed at minimising the psychological distress of Portuguese caregivers.

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.

Informal dementia caregivers are at greater risk of experiencing physical and mental health issues as compared to the general population. Internet-based resources may provide accessible opportunities to backing informal dementia caregivers by addressing their information and support needs. This cross-sectional study aims to characterize the use of dementia and caregiving-related internet resources by caregivers and identify variables associated with such use. Primary data were collected through a web-based survey (N= 158). Linear regression models were used to assess the associations of predisposing, enabling, and need variables with the frequency of using the internet for caregiving-related purposes. Most caregivers (93%) have ever used the internet to gather general information about dementia. The frequency of using internet resources was, however, moderate. The multivariable linear regression model suggests that being younger (β = −0.110,p= 0.009), not having a source of support to provide care (β = −2.554,p= 0.012), having used a face-to-face psychosocial intervention at some point (β = 2.731,p= 0.003), being employed (β = 2.558,p= 0.013), and appraising one's own physical health negatively (vs. appraising it as similar; β = 3.591,p< 0.001), are associated with a higher frequency of using caregiving-related internet resources. Our findings confirmed the association of age and perceived health status with caregiving-related internet use reported in other studies. The role of enabling variables as lifetime access to psychosocial interventions and having a usual source of support to provide care was a new addition. This study informs the design and deployment of information and support to dementia caregivers.