Adaptation, testing, and use of the "iSupport for Dementia" program in different countries: a systematic review.

The World Health Organization developed the "iSupport for Dementia" program for family caregivers of people with dementia. Objective: To explore studies on adaptation, randomized clinical trial protocols, and preliminary results of iSupport by unpaid caregivers of people living with dementia in different countries. Methods: Systematic review. Results: Ten cultural adaptation studies, eight randomized clinical trial protocols, and two preliminary results were included. Adaptation studies showed adjustments in terminology, design, and additional resources. Clinical trial protocols included burden as the primary outcome, and baseline, three months of intervention, and follow-up after six months. Studies with preliminary results found positive effects on the mental health and well-being of caregivers after using the program. Conclusion: iSupport is an online program of the World Health Organization in response to dementia in implementation in different countries.

A Organização Mundial da Saúde desenvolveu o programa "iSupport for Dementia" para cuidadores familiares de pessoas com demência. Objetivo: Explorar estudos sobre adaptação, protocolos de ensaio clínico randomizado e resultados preliminares do "iSupport" por cuidadores não remunerados de pessoas que vivem com demência em diferentes países. Métodos: Revisão sistemática. Resultados: Foram incluídos dez estudos de adaptação cultural, oito protocolos de Ensaio Clínico Randomizado e dois resultados preliminares. Os estudos de adaptação apresentaram os ajustes nas terminologias, design e recursos adicionais. Os protocolos de ensaio clínico incluíram a sobrecarga como desfecho primário, e com linha de base, três meses de intervenção e acompanhamento após seis meses. Os estudos com resultados preliminares encontraram efeitos positivos na saúde mental e bem-estar dos cuidadores após o uso do programa. Conclusão: O iSupport é um programa online da Organização Mundial da Saúde em resposta à demência na implantação em diferentes países.

Efficacy of iSupport-Brasil for unpaid caregivers of people living with dementia: protocol for a randomized and controlled clinical trial.

Unpaid caregivers of people living with dementia tend to suffer mental health problems as a result of the negative effects associated with the care tasks. Thus, psychosocial interventions for this population group are necessary. iSupport is an online support program for caregivers that was created by the World Health Organization. Objective: To describe the design of a randomized clinical trial to measure the efficacy of the iSupport-Brasil version on caregivers' mental health and well-being. Methods: The participants will be randomized into Intervention Group (IG) (n=195) and Control Group (CG) (n=195). For three months, the IG will access the iSupport-Brasil platform, the CG will enter the electronic page of the Brazilian Alzheimer's Association, and both groups will be emailed the preliminary version of the "Guia de cuidados para a pessoa idosa" e-book (a guide to providing care to the elderly) from the Ministry of Health. The data will be collected at three moments: baseline, and three and six months after the beginning of the intervention. Results: It is expected that it will be possible to provide diverse validity evidence about iSupport-Brasil as an online and free intervention alternative, as a preventive means and as a way to promote mental health among caregivers of people living with dementia. Conclusion: Through the evaluation protocol of this randomized clinical trial on the effects of the iSupport-Brasil program, it may become a reference for countries that plan to adapt and improve the iSupport program using digital health solutions.

Cuidadores informais de pessoas que vivem com demência tendem a sofrer problemas de saúde mental como resultado dos efeitos negativos associados às tarefas de cuidado. Assim, intervenções psicossociais para essa população são necessárias. O iSupport é um programa de apoio online para cuidadores criado pela Organização Mundial da Saúde. Objetivo: Descrever o desenho de um ensaio clínico randomizado para medir a eficácia da versão iSupport-Brasil na saúde mental e no bem-estar de cuidadores. Métodos: Os participantes serão randomizados em Grupo Intervenção (GI) (n=195) e Grupo Controle (GC) (n=195). Durante três meses, o GI acessará a plataforma iSupport-Brasil, o CG entrará na página eletrônica da Associação Brasileira de Alzheimer e ambos os grupos receberão por e-mail a versão preliminar do e-book Guia de cuidados para a pessoa idosa, do Ministério da Saúde. Os dados serão coletados em três momentos: linha de base, três e seis meses após o início da intervenção. Resultados: Espera-se que seja possível fornecer diversas evidências sobre os efeitos do iSupport-Brasil como alternativa de intervenção online e gratuita, de forma a promover a saúde mental entre os cuidadores de pessoas que vivem com demência. Conclusão: O protocolo de avaliação deste ensaio clínico randomizado sobre os efeitos do programa iSupport-Brasil pode se tornar uma referência para os países que planejam adaptar e melhorar esta intervenção, usando soluções digitais de saúde.

ISupport-Brasil: Preliminary results of the usability and acceptability assessment by caregivers of people who have dementia.

Objective: To assess usability and acceptability of iSupport-Brasil (iSupport-BR) to virtually support family caregivers of people who have dementia. Materials and methods: In the first stage, nine caregivers/former caregivers assessed the interface of the platform that hosts iSupport-BR. In the second stage, 10 caregivers assessed acceptability of the platform and answered the System Usability Scale (SUS), which varies from 0 to 100 points. A descriptive analysis of the quantitative data was performed, as well as a thematic analysis on the open questions. All the ethical aspects were respected. Results: The results of the first stage indicated a user-friendly interface of the system and relevant content of the program, with 55.6 and 77.8% of the participants assigning the maximum grade to these questions, respectively. Of the five possible points, the system's mean score was 3.7. In Stage 2, 80% of the caregivers rated the program as very useful and 100% would recommend it to other caregivers. Perception of the program's usability by the SUS scale was excellent (M = 86.5 ± 11.5). Conclusion: This research allowed elaborating the final version of iSupport-BR, considering usability and acceptability of the platform and the program for computers/notebooks, being a pioneer in evaluating it for use in smartphones. Future research studies will have to assess the effects of iSupport-BR on the caregivers' mental health.

Usability and acceptability of internet-based interventions for family carers of people living with dementia: systematic review.

Objectives: Internet-based interventions can help carers of people living with dementia to cope with care-related challenges and can help improve their wellbeing. This systematic review aimed at investigating the criteria of usability and acceptability of self-guided internet-based interventions for family carers of people living with dementia. Method: Searches were conducted on PubMed, Virtual Health Library Regional Portal (Americas), MEDLINE, PsycINFO, Scopus, and Cochrane. Studies published up to December 2019, in English, Portuguese, or Spanish, were eligible. We followed the definition/criteria from ISO ISO-9241-11 for usability (efficiency, effectiveness, and satisfaction) and acceptability (barriers for using and utility). Methodological quality was evaluated using specific tools according to each study design. Results: Ten studies were included, all of which had high methodological quality. Carers of people living with dementia indicated that internet-based interventions were mostly effective, efficient, and satisfactory. They considered these to be informative, relevant, and functional, highlighting the utility and intention of using the resource in the future. The high heterogeneity in the terms and methods used to evaluate usability and acceptability hindered cross-study comparisons, however internet-based interventions were considered useful and acceptable by most carers. Conclusion: Future research should consider expanding the criteria of usability and acceptability to better reflect the needs of this population.