Qualidade de Vida e Iniciativas Governamentais de apoio a cuidadores familiares de pessoas dependentes de cuidado

Abstract

Introduction: Changes in the demographic, nutritional and epidemiological characteristics of the Brazilian population have provided an increase in the occurrence of diseases and injuries of non-communicable diseases that, when do not cause the death of their carriers, generate disabling sequelae and injuries, making them dependent on care. In general, these people´s care is the responsibility of a family member, whose quality of life (QoL) is deeply affected, also leading to illness. Objective: To analyze the factors related to the QoL of family caregivers and governmental initiatives support to families of people dependent on care. Methods: This thesis is linked to the project “Factors associated with changes in the quality of life of family caregivers of care-dependent individuals – a mixed method study ". This is a longitudinal study, started in 2016, that involves multiple approaches (qualitative, literature review and quantitative), carried out with a restricted population group of family caregivers and their dependents, linked to two Primary Health Care services in the municipality of Belo Horizonte, Minas Gerais, Brazil. The thesis was developed in three correlated stages: (1) qualitative study; (2) literature review; and (3) longitudinal study. The qualitative study was carried out with a sample of 25 family caregivers, drawn from the baseline, aiming to understand the sociocultural factors that contribute to the QoL of these people. For this purpose, recorded interviews were carried out through home visits from October 2016 to March 2017, in which a script with eight open questions related to the process of caregiving was used. The interviews were transcribed and analyzed using the data analysis technique contents. The literature review was carried out with the objective of identifying governmental initiatives support to family caregivers existing in the countries of South America. The searches were carried out on PubMed and Virtual Health Library portals and on the official websites of the governments of the South American countries. The total of 19 publications were found, 16 governmental and three scientific, which were analyzed and categorized according to the type of support offered to the family caregiver. The longitudinal study was carried out with 135 family caregivers (losses: n = 4), aiming to estimate the determinants of the decrease in QoL of these people. For such, home visits were carried out from December 2021 to July 2022, in which the same baseline instruments were applied (Barthel Index, WHOQOL-bref and questionnaires for sociodemographic characterization, life habits and health status of caregiver and dependent). The outcome variable was ‘the decrease in QoL' of the family caregiver, which originated from the difference between the level of QoL in the baseline and follow-up stage. Data analysis was performed using the technique of multiple Poisson regression at a statistical significance level of 5%. Results: Step 1 – Qualitative study: study participants reported different sociocultural factors that contributed to their QoL. These factors were divided into three main categories: 1) The impact of sociocultural constructs on the care process; 2) Self-care and its nuances: old challenges for caregivers; and 3) State and caregivers: challenges and possibilities. Step 2 – Literature review: there are government initiatives related to the theme, however, there is no specific legislation in force to support family caregivers. Step 3 – Longitudinal study: eight factors independently associated with decrease in the QoL of the family caregiver, among them, four of protection (religion, physical activity, shared care, sleeping time) and four of risk (hospitalization of the dependent in the last twelve months, worsening of the dependency level, age of the caregiver, time in the role of caregiver) were identified. Conclusions: Most factors related to the QoL of family caregivers are likely to have an intervention, however, there are no specific government initiatives to support these people in Brazil and other countries in South America. Therefore, it is necessary to develop programs and public policies to support family caregivers to protect and promote their health and QoL, preserving, still, the functionality of the families.