Translation and cultural adaptation of the Positive Aspects of Caregiving Scale for caregivers of people living with dementia in Brazilian context: a methodological study.

BACKGROUND: The Positive Aspects of Caregiving (PAC) scale is used to assess psychosocial benefits provided to caregivers by the task of caring. The PAC scale consists of nine items, assessed using a five-point Likert scale, with higher values indicating greater positive perceptions and gains from the caregiving experience. OBJECTIVE: To translate and culturally adapt the PAC scale for informal Brazilian caregivers of people with dementia. DESIGN AND SETTING: A methodological study was conducted at the Federal University of São Carlos. METHODS: The following stages were carried out: Translation; Synthesis of the translations; Back-translation; Evaluation by an experts' committee; and Pre-test. RESULTS: Two independent professionals translated the PAC scale. The consensus version was obtained by merging both translations, which were back-translated into English by a third translator. The expert committee comprised three specialists in the area and project researchers. All scale items presented a Content Validity Index of 1 (CVI = 1.0), and thus remained in the pre-final version of the instrument. The instrument was pre-tested with seven caregivers of people with dementia, the majority of whom were women (57.1%), with a degree of kinship corresponding to sons/daughters (57.1%) and an average age of 55.2 (± 4.1) years. The caregivers considered it clear and understandable and made no suggestions for changes. CONCLUSION: The PAC scale was translated and culturally adapted for use by informal caregivers of people with dementia in Brazil. However, a psychometric analysis of the instrument is necessary to provide normative data for this population group.

Translation and cultural adaptation of the Positive Aspects of Caregiving Scale for caregivers of people living with dementia in Brazilian context: a methodological study

ABSTRACT BACKGROUND: The Positive Aspects of Caregiving (PAC) scale is used to assess psychosocial benefits provided to caregivers by the task of caring. The PAC scale consists of nine items, assessed using a five-point Likert scale, with higher values indicating greater positive perceptions and gains from the caregiving experience. OBJECTIVE: To translate and culturally adapt the PAC scale for informal Brazilian caregivers of people with dementia. DESIGN AND SETTING: A methodological study was conducted at the Federal University of São Carlos. METHODS: The following stages were carried out: Translation; Synthesis of the translations; Back-translation; Evaluation by an experts' committee; and Pre-test. RESULTS: Two independent professionals translated the PAC scale. The consensus version was obtained by merging both translations, which were back-translated into English by a third translator. The expert committee comprised three specialists in the area and project researchers. All scale items presented a Content Validity Index of 1 (CVI = 1.0), and thus remained in the pre-final version of the instrument. The instrument was pre-tested with seven caregivers of people with dementia, the majority of whom were women (57.1%), with a degree of kinship corresponding to sons/daughters (57.1%) and an average age of 55.2 (± 4.1) years. The caregivers considered it clear and understandable and made no suggestions for changes. CONCLUSION: The PAC scale was translated and culturally adapted for use by informal caregivers of people with dementia in Brazil. However, a psychometric analysis of the instrument is necessary to provide normative data for this population group.

Sense of mastery in caregivers of people living with dementia: translation and cultural adaptation of the Pearlin Mastery Scale / Senso de domínio de cuidadores de pessoas que vivem com demência: tradução e adaptação cultural da Pearlin Mastery Scale

ABSTRACT The sense of mastery is conceptualized as a positive aspect of care targeted at people living with dementia, a coping mechanism to reduce burden, and may represent a protective factor for caregivers' mental and physical health. Objective: To translate and culturally adapt the Pearlin Mastery Scale for Brazil. Methods: A methodological study was conducted at the Federal University of São Carlos in which the initial translation stages were followed; synthesis; back-translation; review by the committee of judges by analyzing the Content Validity Index (CVI); and test of the pre-final version. Results: Two specialists translated the scale into Brazilian Portuguese and defined a consensus version with the researchers. Subsequently, another two specialists back-translated the consensus version, which was reviewed by three judges who are PhDs in the area, considering all scale items as very equivalent (CVI=1.0), and maintaining them in the pre-final version of the instrument. This was tested in a first group of caregivers for them to point out adjustments. The suggestions were accepted by modifying three items and, afterward, the scale was tested in a second group, which did not present difficulties answering the instrument. Conclusion: The Pearlin Mastery Scale was translated and culturally adapted for Brazil, showing equivalence. However, future psychometric analyses of the instrument are required to make it available for use in this population.

RESUMO O senso de domínio é conceituado como um aspecto positivo do cuidado voltado às pessoas que vivem com demência, um mecanismo de enfrentamento para reduzir a sobrecarga e que pode representar um fator protetor para a saúde mental e física do cuidador. Objetivo: Traduzir e adaptar culturalmente a Pearlin Mastery Scale para o Brasil. Métodos: Estudo metodológico conduzido na Universidade Federal de São Carlos, em que foram seguidas as etapas de tradução inicial; síntese; retrotradução; revisão pelo comitê de juízes pela análise do Índice de Validade de Conteúdo (IVC); e teste da versão pré-final. Resultados: Dois especialistas traduziram a escala para o português brasileiro e definiram uma versão consensual com os pesquisadores. Posteriormente, outros dois especialistas retrotraduziram a versão consensual, que foi revisada por três juízes doutores na área, considerando todos os itens da escala como muito equivalentes (IVC=1,0), mantendo-os na versão pré-final do instrumento. Esta foi testada em um primeiro grupo de cuidadores, a fim de se apontarem adequações. As sugestões foram acatadas mediante a modificação de três itens e, depois, a escala foi testada em um segundo grupo, o qual não apresentou dificuldades em responder ao instrumento. Conclusão: A Pearlin Mastery Scale foi traduzida e adaptada culturalmente para o Brasil, demonstrando equivalência. Entretanto, análises psicométricas futuras do instrumento são necessárias para disponibilizá-lo para uso entre essa população.

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.

Efficacy of iSupport-Brasil for unpaid caregivers of people living with dementia: protocol for a randomized and controlled clinical trial / Eficácia do iSupport-Brasil para cuidadores informais de pessoas que vivem com demência: protocolo de um ensaio clínico randomizado e controlado

ABSTRACT. 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.

RESUMO. 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.

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.

Entender e envolver: avaliando dois objetivos de um programa para cuidadores de idosos com Alzheimer / Comprehend and collaborate: evaluating two objectives of a program for caregivers of people with Alzheimer's disease / Comprender y colaborar: evaluando dos objetivos de un programa para cuidadores de ancianos con Alzheimer

Intervenções efetivas são necessárias para ajudar familiares que cuidam de idosos com doença de Alzheimer (DA) a manejarem as dificuldades que surgem nessa situação. Neste estudo, foram avaliados dois objetivos de uma intervenção psicoeducativa, que visavam ajudar cuidadores familiares a: (a) entender formas construtivas de agir e (b) envolver o idoso com DA em atividades cotidianas. Participaram do programa 15 cuidadoras, que responderam um instrumento de conhecimentos e outro sobre comportamentos do idoso, em três momentos. Foram observados resultados significativos na aprendizagem de conceitos (t(13)=9,048; p<0,001; d=2,42) e em sua retenção, quando se comparou o follow-up com o pré-teste (t(10)=6,431; p<0,001; d=1,95). O uso de estratégias novas para contornar dificuldades dos idosos também foi mantido, um ano depois do término da intervenção. Assim, esse programa apresentou efeitos positivos para os cuidadores.

Effective interventions are needed to help caregivers who assist elderly people with Alzheimer's disease (AD) to manage the difficulties that arise. In this study, two objectives of a psychoeducational program were evaluated and aimed at helping family caregivers to: (a) comprehend constructive ways to act, and (b) involve the person with AD in everyday activities. Fifteen caregivers participated in the program, answering a knowledge-based test and a questionnaire about behavior problems the person with AD was presenting, at three time-points. The results indicated significant impacts on learning new concepts (t(13)=9.048, p<.001, d=2.42) and the retention of these concepts, when the follow-up and the pre-test scores were compared (t(10)=6.431, p<.001, d=1.95). In addition, the use of new strategies to manage the elderly person's problem behaviors was maintained, one year later. Thus, this program had positive effects on the caregivers.

Intervenciones efectivas son necesarias para ayudar familiares que cuidan de ancianos con enfermedad de Alzheimer (EA) a manejar las dificultades que surgen. En este estudio, se evaluaron dos objetivos de una intervención psicoeducativa, que pretendían ayudar a los cuidadores familiares a: (a) entender formas constructivas de actuar y (b) involucrar al anciano con EA en actividades cotidianas. Participaron del programa 15 cuidadoras, que respondieron un instrumento de conocimientos y otro sobre comportamientos del anciano, en tres momentos. Se observaron resultados significativos en el aprendizaje de conceptos (t(13)=9,048; p<0,001; d=2,42) y en su retención, comparando el seguimiento con el momento antes de la intervención (t(10)=6,431; p<0,001; d=1,95). El uso de estrategias nuevas para controlar las dificultades de los ancianos también se mantuvo, un año después del término de la intervención. Así, este programa presentó efectos positivos para los cuidadores.