Adaptação cultural e validação da escala para medir la habilidad de cuidado de cuidadores familiares de personas con enfermedad crónica para o contexto brasileiro

Abstract

INTRODUCTION: Family caregivers of people with chronic diseases often experience life changes, which may impact on their ability to provide care. In this context, knowing the skills of the caregivers is relevant, aiming to help it through assistance actions and improving the quality of care provided, besides their quality of life. In 2008, the researcher Lucy Barrera Ortiz created and validated the first version of the instrument “Habilidad de cuidado de cuidadores familiares de personas con enfermedad crónica” and in 2014 the author made available the second version of the instrument, after testing the psychometric properties of it and named it “Escala para medir la habilidad de cuidado de cuidadores familiares de personas con enfermedad crónica”. The author authorized us to do the process of translation, adaptation and validation of the scale in Brazil. The process began in 2016 and the stages of cultural adaptation and validation of the scale were developed in this master's research from 2017. OBJECTIVE: To adapt and validate the “Escala para medir la habilidad de cuidado de cuidadores familiares de personas con enfermedad crónica” to the Brazilian context". METHODS: This is a methodological study that followed the steps recommended by Beaton et al. (2000). The process happened with the stages of translation, synthesis of translations, back-translation, reviewed by a committee of experts and pre-testing. After its cultural adaptation, the Brazilian version was titled “Escala para medir a habilidade de cuidado de cuidadores familiares de pessoas com doença crônica” (Escala HCCF-DC) and then were analyzed the psychometric properties of reliability (internal consistency) and validity (convergent and discriminant) of the same. All ethical precepts have been respected (Opinion No. 1,435,698). In the present research, three articles derived from the study will be presented, which specifically aimed to: 1. Identify in the literature instruments that measure the care ability of the family caregiver of people with chronic disease; 2. To translate and culturally adapt the “Escala para medir a habilidade de cuidado de cuidadores familiares de pessoas com doença crônica” for the Brazilian context; 3. Evaluate the reliability and construct validity of the Brazilian version of the HCCF-DC Scale. RESULTS: In the systematic review of the literature, we found three instruments to measure family caregiver care ability: Caring Ability Inventory, Habilidad de cuidado de cuidadores familiares de personas con enfermedad crónica and Home Health Care Competence Instrument "GCPC-UN-CPC. In the process of cultural adaptation of the “Escala para la medir a habilidad de cuidado de cuidadores familiares de personas con enfermedad crónica”, all items of the scale were reviewed by a committee composed of seven specialists, in which the content validity index (IVC) ) of 1.00 in 41 items, IVC = 0.86 in three items and IVC = 0.71 in four items. After the adequacy of the seven items, the pre-test was applied to 14 family caregivers of people with chronic kidney disease (CKD), adjusting the verb tense of the items to the present indicative, to facilitate the understanding of the items by the population target, reaching the final version of the HCCF-DC Scale. This version was tested for its internal consistency and construct validity. It was observed good reliability of the domains and total of the scale, with Cronbach's alpha ≥ 0,70. In addition, the scale presented discriminative capacity of caregivers' care ability according to the quality of life (worse and better) and the presence of anxious and depressive symptoms. In addition, we hypothesized the relationship between the scale measure with domains of another instrument to measure care ability (Caregivers' Skill Inventory) and overload and dependence for instrumental activities of the family's daily life, thus indicating validity of the convergent and discriminant construct of the HCCF-DC Scale when applied to 107 family caregivers of people with CKD on hemodialysis. CONCLUSION: The HCCF-DC Scale demonstrated reliability and validity of a convergent and discriminant construct when applied to family caregivers of people with CKD. Further research is recommended to verify the psychometric performance of the scale in Brazil, as well as other instruments of measurement of the ability of care found in the literature review, thus consolidating their reliability and validity. In addition, there is a need to broaden the knowledge about the caregiver's ability to care in Brazil and in the world, as well as related aspects.