Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study

Abstract

Background:The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024.Objective: Analyze the gender differences in health and quality of life indicators of informal caregivers residing in two Spanish autonomous communities (Granada, Andalusia and Gipuzkoa, Basque Country) and its evolution over time, in relation with the characteristics of caregivers, the caregiving situation, and support received. Methods:The CUIDAR-SE study employs a longitudinal, multicenter design across three phases, tracking health and quality of life indicators among informal caregivers. Utilizing a questionnaire adapted to the Spanish context that employs validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects.Results: Funding for the CUIDAR-SE study was in three phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemicrelated challenges. As of March 2024, 1,294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases.Conclusions: This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of health impacts of caregiving in Spain. The incorporation of gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain.