Tradução e adaptação da escala “Dementia quality of life scale for older family carers – DQOL-OC” para o contexto brasileiro

Abstract

As a result of the rise in the population longevity, the prevalence of the diseases that commonly affect older people, such as the dementia syndromes, tends to increase. People with dementia require long-term care, which is mostly provided by family members. Family caregivers often do not have the necessary training to provide care, which may impact their physical, emotional and social weel-being, which may compromisse their quality of life (QoL). Contemporary family arrangements have led to an increase in the number of older people who assume the role of caregivers. Assessing and implementing effective strategies to increase the QoL of older family caregivers is therefore paramount. Age- and dementia-specific QoL scales for use with older caregivers are necessary to validly and reliably measure the QoL of these individuals. With this purpose, the Dementia Quality of Life Scale for Older Family Carers (DQoL-OC) was firstly developed and validated in the United Kingdom by Oliveira et al. (2018). Translating and culturally adaptating such scale for use in Brazil is important to provide a relevant measure for use by health professionals in clinical and research practice, as well as by the older caregivers themselves to assess their QoL. OBJECTIVE: To translate and culturally adaptat the DQoL-OC in Brazil. METHODS: This was a methodological study conducted in five sequential phases, as per recommended by Beaton, Guillemin and Ferraz (2000): initial translation, synthesis of translations, back translation, review by an expert committee and pre-test of DQoL-OC. All ethical procedures were respected (approval n. 2.291.487). The study was reported into two academic papers, which aimed to: 1. Identify in the literature and describe the psychometric characteristics of the specific QoL instruments for use with family caregivers of people with dementia which had been developed (or translated and culturally adapted) and validated for use in Brazil; and 2. Translate and culturally adapt the DQoL-OC for use in Brazil. RESULTS: In the systematic review of the literature, only two studies reporting the cross-cultural adaptation and validation of a single, two-version QoL instrument for use with both family carers (CQOL) and people with Alzheimer’s Disease (QOL-AD) were identified. In the translation and adaptation of the DQoL-OC in Brazil, two translators independently conducted the translation of the DQoL-OC from English into Portuguese. A consensual version was established, which was then back translated into English by a third translator whose mother tongue was British English. Subsequently, the translated versions of the DQoL-OC were reviwed by an expert panel composed of seven specialists who had extensive knowledge in QoL, caregivers, older people and dementia. The Content Validity Index (CVI) was calculated for all of the items of the DQoL-OC, of which 5.3% showed insufficient CVI (< 0.78 - 2 items) and were revised. Finally, the pre-test stage was conducted with 20 caregivers to assess the clarity and relevance of the items. The caregivers suggested modification in 21 items to help improve the clarity and understanding of the Brazilian version of the DQoL-OC. CONCLUSION: The Brazilian version of DQoL-OC was translated and culturally adapted for use 9 in Brazil. Further research is necessary to establish the validity and reliability of this tool in a Brazilian sample of Brazilian oldfer family caregivers of people with dementia.