Adaptação cultural e validação da “Pearlin Mastery Scale” para o português do Brasil e avaliação da eficácia do programa iSupport-Brasil sobre o senso de domínio em cuidadores não remunerados de pessoas que vivem com demência

Abstract

The sense of mastery is conceptualized as a positive aspect of caregiving, serving as a coping mechanism to reduce caregiver burden and potentially acting as a protective factor for the mental and physical health of individuals caring for people with dementia. The Pearlin Mastery Scale (PMS) is a unidimensional tool that measures the level of individual mastery but lacks validation for use in Brazil. Translating, adapting, and analyzing evidence of validity for this scale are essential steps in assessing the effects of interventions and support programs for caregivers in Brazil, such as iSupport for Dementia, an online support program that provides self-guided education for unpaid caregivers of people living with dementia, aiming to improve the well-being and mental health of this population. Objective: To translate, culturally adapt and validate the Pearlin Mastery Scale for use in Brazil and to verify the effect of iSupport-Brazil on the sense of mastery in unpaid caregivers of people living with dementia. Three articles address the specific objective of this thesis: (1) to translate and culturally adapt the PMS for use in Brazil; (2) to analyze validity evidence for the Brazilian version of the PMS; and (3) to examine the effect of iSupport-Brazil on the sense of mastery among unpaid caregivers of people living with dementia. Methods: A methodological study was conducted following steps that included initial translation, synthesis, back-translation, expert panel review using the Content Validity Index (CVI), and testing the pre-final version of the PMS (1). Evidence of internal structure validity was examined through confirmatory factor analysis (CFA), reliability testing, and criterion validity assessment (2). Additionally, a randomized controlled trial (RCT) was conducted with 404 participants equally randomized into intervention (IG - iSupport-Brazil) and control groups (CG - educational website and e-book). Outcomes were measured by sense of mastery using the PMS, and symptoms of depression and anxiety using the Hospital Anxiety and Depression Scale, at baseline (pre-test), post-intervention (three months after baseline/post-test), and follow-up (six months after baseline). Intention-to-treat (ITT) and per-protocol (PP) analyses were performed to compare groups and time points (within-group) and to assess between-group differences in changes (deltas) (3). All ethical principles were observed. Results: The scale was translated and back-translated by experts, reviewed by doctoral-level judges, and tested with caregivers, with adjustments made to three items based on initial feedback (1). The final version demonstrated good reliability (Cronbach’s alpha=0.75) and significant correlations with burden (p=-0.56), depression (p=-0.57), anxiety (p=-0.57), and quality of life (p=0.64) (2). In the RCT, no significant differences were observed between groups regarding sociodemographic characteristics. Among the 187 post-test participants, the intervention group showed a reduction in depressive symptoms and anxiety, as well as an increase in sense of mastery at follow-up. ITT and PP models did not indicate significant covariance effects (3). Conclusion: The PMS was translated and culturally adapted for Brazil, demonstrating equivalence. Evidence of validity for the Brazilian version of the scale was found based on internal structure, reliability, and correlations with theoretically related constructs, indicating its suitability for use with caregivers of individuals living with dementia. Moreover, the iSupport-Brazil program showed potential to enhance caregivers' sense of mastery following its use. However, there is no evidence that the intervention shows a significant difference between groups regarding its effects on the measure.