Abstract

The objective is to analyze the factors associated with the worsening of the self-rated health (SRH) of Brazilian women who live with elderly people with functional dependence (EFD) during the first wave of COVID-19. ConVid - Behavior Research was used as a data source. For the analysis, the group of women who lived with EFD was compared with those who lived with the elderly without any dependence. Hierarchical prevalence ratio (PR) models were estimated to test the associations between sociodemographic characteristics, changes in income, routine activities and health in the pandemic, with the outcome of worsening SRH. This worsening was more frequent in the group of women living with EFD. After adjusting for hierarchical factors, being black (PR=0.76; 95%CI 0.60-0.96) and having a per capita income lower than minimum wage (PR=0.78; 95%CI 0.64- 0.96) were shown to be protective factors for SRH worsening among EFD co-residents. Indisposition, emergence/worsening of back problems, affected sleep, poor SRH, feeling loneliness and difficulty in carrying out routine activities during the pandemic were positively associated factors. The study demonstrates that living with EFD was associated with a worsening in the health status of Brazilian women during the pandemic, especially among those of higher social status.

Key words:
Caregivers; Frail Elderly; COVID-19

Introduction

The COVID-19 pandemic threatens survival¹1 Barbosa IR, Galvão MHR, Souza TA, Gomes SM, Medeiros AA, Lima KC. Incidência e mortalidade por COVID-19 na população idosa brasileira e sua relação com indicadores contextuais: um estudo ecológico. Rev Bras Geriatr Gerontol 2020; 23(1):e200171. and quality of life²2 Romero DE, Muzy J, Damacena GN, Souza NA, Almeida WS, Szwarcwald CL, Malta DC, Barros MBA, Souza Júnior PRB, Azevedo LO, Gracie R, Pina MF, Lima MG, Machado ÍE, Gomes CS, Werneck AO, Silva DRP. Idosos no contexto da pandemia da COVID-19 no Brasil: efeitos nas condições de saúde, renda e trabalho. Cad Saude Publica 2021; 37(3):e00216620. for older adults. Those who live with reduced strength, resistance, and physiological function, in a fragile situation, due to multiple causes are exposed to an even greater risk of developing severe forms of the disease³3 Hewitt J, Carter B, Vilches-Moraga A, Quinn TJ, Braude P, Verduri A, Pearce L, Stechman M, Short R, Price A, Collins JT, Bruce E, Einarsson A, Rickard F, Mitchell E, Holloway M, Hesford J, Barlow-Pay F, Clini E, Myint PK, Moug SJ, McCarthy K; COPE Study Collaborators. The effect of frailty on survival in patients with COVID-19 (COPE): a multicentre, European, observational cohort study. Lancet Public Health 2020; 5(8):e444-e451.. Physical proximity as an infecting factor⁴4 Aquino EML, Silveira IH, Pescarini JM, Aquino R, Souza-Filho JA, Rocha AS, Ferreira A, Victor A, Teixeira C, Machado DB, Paixão E, Alves FJO, Pilecco F, Menezes G, Gabrielli L, Leite L, Almeida MCC, Ortelan N, Fernandes QHRF, Ortiz RJF, Palmeira RN, Junior EPP, Aragão E, Souza LEPF, Netto MB, Teixeira MG, Barreto ML, Ichihara MY, Lima RTRS. Medidas de distanciamento social no controle da pandemia de COVID-19: potenciais impactos e desafios no Brasil. Cien Saude Colet 2020; 25(Supl. 1):2423-2446. and the rapid virus spread required that the care provided to the frail elderly population be intensified⁵5 Lightfoot E, Moone RP. Caregiving in Times of Uncertainty: Helping Adult Children of Aging Parents Find Support during the COVID-19 Outbreak. J Gerontol Soc Work 2020; 63(6-7):542-552., especially in the first pandemic wave, when limited knowledge of the disease required greater caution⁶6 World Health Organization (WHO). WHO Director-General's opening remarks at the media briefing on COVID-19-11 March 2020 [Internet]. 2020 [cited 12 jan 2021]. Available from: https://www.who.int/director-general/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---11-march-2020.
https://www.who.int/director-general/spe... .

The guidelines of international health organizations to reduce physical contact between people entailed challenges for family members who live with older adults who depend on care, such as i) the fear of infecting the most vulnerable family member⁷7 Schimmenti A, Billieux J, Starcevic V. The four horsemen of fear: An integrated model of understanding fear experiences during the COVID-19 pandemic. Clinical Neuropsychiatry 2020; 17(2):41.; ii) loss of support from helpers outside the home⁸8 Archer J, Reiboldt W, Claver M, Fay J. Caregiving in Quarantine: Evaluating the Impact of the Covid-19 Pandemic on Adult Child Informal Caregivers of a Parent. Gerontol Geriatr Med 2021; 7:2333721421990150.^,99 Romero DE, Maia LR, Muzy J, Andrade N, Szwarcwald CL, Groisman D, Souza Júnior PRB. O cuidado domiciliar de idosos com dependência funcional no Brasil: desigualdades e desafios no contexto da primeira onda da pandemia de COVID-19. Cad Saude Publica 2022; 38:e00216821.; iii) the difficulty of accessing essential goods when adopting isolation at home¹⁰10 Ribeiro AP, Moraes CL, Sousa ER, Giacomin K. O que fazer para cuidar das pessoas idosas e evitar as violências em época de pandemia? Abrasco GT Violencia Saude 2020; (n. esp.):1-5. and the lack of material resources in a setting of economic crisis¹¹11 Bennet MR, Zhang Y, Yeandle S. Caring and COVID-19: hunger and mental wellbeing. Sheffield: CIRCLE, University of Sheffield; 2020.; iv) the increasing family conflicts¹²12 Larson ME, Chavez JV, Behar-Zusman V. Family functioning in an international sample of households reporting adult caregiving during the COVID-19 pandemic. Families Systems Health 2021; 39(4):609-617.; v) cognitive decline¹³13 Noguchi T, Kubo Y, Hayashi T, Tomiyama N, Ochi A, Hayashi H. Social Isolation and Self-Reported Cognitive Decline Among Older Adults in Japan: A Longitudinal Study in the COVID-19 Pandemic. J Am Med Dir Assoc 2021; 22(7):1352-1356.e2. and deteriorating functionality¹⁴14 Machado CLF, Pinto RS, Brusco CM, Cadore EL, Radaelli R. COVID-19 pandemic is an urgent time for older people to practice resistance exercise at home. Exp Gerontol 2020; 141:111101. of older adults, due to social distancing and other stressors mentioned earlier.

The care of older adults who require help to perform activities of daily living (functional dependents¹⁵15 Organização Mundial da Saúde (OMS). CIF: classificação internacional de funcionalidade, incapacidade e saúde. São Paulo: Editora da Universidade de São Paulo; 2003.) has been a Public Health concern¹⁶16 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2019; 52(Supl. 2):9s.^,1717 Lima-Costa MF, Peixoto SV, Malta DC, Szwarcwald CL, Mambrini JVM. Cuidado informal e remunerado aos idosos no Brasil (Pesquisa Nacional de Saúde, 2013). Rev Saude Publica 2017; 51(Supl. 1):6s. since before the pandemic, and this is because, in general, care demands a significant amount of time, dedication, and resources from caregivers¹⁸18 Pereira MG, Carvalho H. Qualidade de vida, sobrecarga, suporte social, ajustamento conjugal e morbilidade psicológica em cuidadores de idosos com dependência funcional. Temas Psicol 2012; 20(2):369-384.. In the family, those living with a dependent relative or friend are often concerned about the possibility of medical emergencies. They employ too much physical effort with care-related activities, their sleep and finances are affected, and they are exposed to several other factors affecting the quality of life¹⁹19 Hearson B, McClement S, McMillan DE, Harlos M. Sleeping with One Eye Open: The Sleep experience of Family Members Providing Palliative Care at Home. J Palliat Care 2011; 27(2):69-78.^,2020 Washington KT, Oliver DP, Smith JB, McCrae CS, Balchandani SM, Demiris G. Sleep Problems, Anxiety, and Global Self-Rated Health Among Hospice Family Caregivers. Am J Hosp Palliat Care 2018; 35(2):244-249..

There is evidence of worse Self-Assessed Health (SAH) of family caregivers of functionally-dependent older adults (FDOA)²¹21 von Känel R, Mausbach BT, Dimsdale JE, Ziegler MG, Mills PJ, Allison MA, Patterson TL, Ancoli-Israel S, Grant I. Refining caregiver vulnerability for clinical practice: determinants of self-rated health in spousal dementia caregivers. BMC Geriatr 2019; 19(1):18.^,2222 Xian M, Xu L. Social support and self-rated health among caregivers of people with dementia: The mediating role of caregiving burden. Dementia 2020; 19(8):2621-2636. and, less frequently, the effect on the health of family members who live with FDOA, regardless of being the primary caregiver²³23 Abdollahpour I, Nedjat S, Noroozian M, Salimi Y, Majdzadeh R. Caregiver Burden: The Strongest Predictor of Self-Rated Health in Caregivers of Patients with Dementia. J Geriatr Psychiatry Neurol 2014; 27(3):172-180.. While cannot be used for health assessments at a clinical level, the SAH can simultaneously measure physical, social, and mental aspects of health²⁴24 Burström B, Fredlund P. Self rated health: Is it as good a predictor of subsequent mortality among adults in lower as well as in higher social classes? J Epidemiol Community Health 2001; 55(11):836-840.. As a result, it has been recognized as a predictor of mortality²⁵25 McGee DL, Liao Y, Cao G, Cooper RS. Self-reported health status and mortality in a multiethnic US cohort. Am J Epidemiol 1999; 149(1):41-46., morbidity²⁶26 Vyas S, Kumaranayake L. Constructing socio-economic status indices: how to use principal components analysis. Health Policy Plan 2006; 21(6):459-468., future health problems²⁵25 McGee DL, Liao Y, Cao G, Cooper RS. Self-reported health status and mortality in a multiethnic US cohort. Am J Epidemiol 1999; 149(1):41-46., and quality of life²⁷27 Fayers PM, Sprangers MA. Understanding self-rated health. Lancet 2002; 359(9302):187-188..

Exposure to the negative effects related to the care of FDOA family members occurs unevenly between economic and social groups¹⁶16 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2019; 52(Supl. 2):9s.^,2828 José JS. A divisão dos cuidados sociais prestados a pessoas idosas: complexidades, desigualdades e preferências. Sociol Problemas Praticas 2012; 69:63-85.

29 Villalobos Dintrans P. Informal caregivers in Chile: the equity dimension of an invisible burden. Health Policy Planning 2019; 34(10):792-799.

30 Ceccon RF, Vieira LJES, Brasil CCP, Soares KG, Portes VM, Garcia Júnior CAS, Schneider IJC, Carioca AAF. Envelhecimento e dependência no Brasil: características sociodemográficas e assistenciais de idosos e cuidadores. Cien Saude Colet 2021; 26(1):17-26.^-3131 Campos PFS. Cuidadoras negras do Brasil. actacientifica 2014; 21(3):11-20.. There is evidence that lower-income strata²⁸28 José JS. A divisão dos cuidados sociais prestados a pessoas idosas: complexidades, desigualdades e preferências. Sociol Problemas Praticas 2012; 69:63-85. and black people³¹31 Campos PFS. Cuidadoras negras do Brasil. actacientifica 2014; 21(3):11-20. are more susceptible to such effects. However, the most referenced family care inequality concerns gender, since care responsibilities fall more heavily on women¹⁶16 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2019; 52(Supl. 2):9s.^,2828 José JS. A divisão dos cuidados sociais prestados a pessoas idosas: complexidades, desigualdades e preferências. Sociol Problemas Praticas 2012; 69:63-85.

29 Villalobos Dintrans P. Informal caregivers in Chile: the equity dimension of an invisible burden. Health Policy Planning 2019; 34(10):792-799.^-3030 Ceccon RF, Vieira LJES, Brasil CCP, Soares KG, Portes VM, Garcia Júnior CAS, Schneider IJC, Carioca AAF. Envelhecimento e dependência no Brasil: características sociodemográficas e assistenciais de idosos e cuidadores. Cien Saude Colet 2021; 26(1):17-26.. In Brazil, research based on the Longitudinal Study of Elderly Health (ELSI-Brasil) conducted from 2015 to 2016¹⁶16 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2019; 52(Supl. 2):9s. revealed that around 72.1% of the FDOA’s primary caregivers are female family members. Such inequalities are due to the historical conformation of the care culture that is permeated with strongly hierarchical relationships and has become invisible and undervalued³¹31 Campos PFS. Cuidadoras negras do Brasil. actacientifica 2014; 21(3):11-20.^,3232 Okin SM. Gênero, o público e o privado. Rev Estud Fem 2008; 16:305-332..

Available adequate social support can mitigate the burden and adverse effects of care for family members living with FDOA³³33 del-Pino-Casado R, Frías-Osuna A, Palomino-Moral PA, Ruzafa-Martínez M, Ramos-Morcillo AJ. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One 2018; 13(1):e0189874., especially in humanitarian emergencies, such as a pandemic⁸8 Archer J, Reiboldt W, Claver M, Fay J. Caregiving in Quarantine: Evaluating the Impact of the Covid-19 Pandemic on Adult Child Informal Caregivers of a Parent. Gerontol Geriatr Med 2021; 7:2333721421990150.. However, the lack of social support networks for care is a striking feature of Brazil³⁴34 Camarano AA. Cuidados para a população idosa e seus cuidadores: demandas e alternativas. Nota Tecnica Ipea 2020; 64:20., although the Federal Constitution provides that care for older adults is a shared responsibility between family, society, and the State (Article 230). Through the results of the ELSI-Brasil (2015-2016), Giacomin et al.¹⁶16 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2019; 52(Supl. 2):9s. shows that 94% of the FDOA in the country are cared for by a family member.

Evidence of the escalating care burden among family members living with FDOA during the pandemic in Brazil was shown in a study by Romero et al.⁹9 Romero DE, Maia LR, Muzy J, Andrade N, Szwarcwald CL, Groisman D, Souza Júnior PRB. O cuidado domiciliar de idosos com dependência funcional no Brasil: desigualdades e desafios no contexto da primeira onda da pandemia de COVID-19. Cad Saude Publica 2022; 38:e00216821.. However, few studies have analyzed the quality of life and health of female FDOA relatives during the pandemic, given that they are still the main ones responsible for home care¹⁶16 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2019; 52(Supl. 2):9s..

Given the abovementioned, this article aims to analyze the deterioration of the Self-Assessed Health of women living with FDOA during the first COVID-19 pandemic wave, considering sociodemographic characteristics and associated contextual changes.

Methods

Data source and sample

ConVid - Behavioral Research is a cross-sectional health survey conducted nationwide during the first stage of the pandemic, from April 24 to May 24, 2020, under the coordination of the Oswaldo Cruz Foundation. Survey data were collected through a virtual self-completion questionnaire via cell phone or computer with internet access. The National Research Ethics Committee (CONEP) approved the project on April 19, 2020, under Opinion No. 3.980.277. Inclusion criteria for participation in the survey were being 18 or older at the time of completion and residing in the Brazilian territory. Post-stratification procedures were performed to obtain a representative sample of the population. Sampling was carried out using the “virtual snowball” method, ultimately reaching 45,161 people. More details are available in the publication on the methods³⁵35 Szwarcwald CL, Souza-Júnior PRB, Damacena GN, Malta DC, Barros MBA, Romero DE, Almeida WS, Azevedo LO, Machado ÍE, Lima MG, Werneck AO, Silva DRP, Gomes CS, Ferreira APS, Gracie R, Pina MF. ConVid - Pesquisa de Comportamentos pela Internet durante a pandemia de COVID-19 no Brasil: concepção e metodologia de aplicação. Cad Saude Publica 2021; 37(3):268320..

Three inclusion criteria were used for the present study: being female, living with at least one older adult, and living in households with at least two people. We intended to exclude cases of older adults living alone with this last criterion. In the end, we selected 7,914 participants.

Variables

As an analysis strategy, we compared women living with FDOA with those living with functionally independent older adults (FIOA). We identified people residing with older adults from the question: “How many residents are older adults (60 years old or older)?”. We identified people residing with FDOA from the positive answer to the question: “Do any of the older adults residing in the household need help to perform activities of daily living, such as eating, dressing, going to the bathroom, moving around the house, or having a bath?” (Yes or No). The others were considered FIOA co-residents.

The study outcome was the deteriorated SAH during the COVID-19 pandemic, obtained from the question: “Do you think the pandemic caused changes in your health?” (Improved; remained the same; got a little worse; got a lot worse). The response options “it got a little worse” and “it got a lot worse” were considered for the outcome. The deteriorated SAH was used as a proxy indicator of changes in the respondents’ health status and quality of life.

The variables included for the analysis of factors associated with the outcome were divided into three groups: (1) sociodemographic, (2) socioeconomic changes and changes in routine activities during the pandemic, and (3) the effect of the pandemic on health.

(1) Sociodemographic variables: Ethnicity/skin color was categorized as white or black, the latter comprising those who self-declared themselves to be black or brown. People who answered yellow or indigenous corresponded to 1% of the sample and were not considered for the analysis of this variable. Age was categorized into two groups, those under 60 and those aged 60 and over. We obtained the per capita household income in minimum wages (MW) from the question: “What was the total household income before the start of the new coronavirus pandemic?”. The answer to this question was divided by the total number of household members and classified into “less than 1 MW” and “1 MW and over”. The household density variable was defined based on the question: “What is the number of residents in your household?”, grouped into the categories “living with one person” or “living with two people and over”.

(2) Variables regarding the socioeconomic changes and changes in routine activities during the pandemic: The change in the level of difficulty in performing routine activities was obtained through the question: “What was your difficulty level in performing routine activities during the pandemic?”, categorized as “very difficult” (very much) and “not very difficult” (no difficulty, a little, and moderate). The impact of the pandemic on income was obtained from the question: “How did the pandemic affect the household’s income?”, which was categorized as “very much affected” (decreased a lot) or “not very much affected” (did not decrease or decreased slightly). Changes in domestic work were obtained from the question: “Did the pandemic affect/modify the amount and type of your domestic work?” categorized into “did not increase much” (it remained the same, decreased and increased) and “increased a lot” (increased).

(3) Variables on the effects of the pandemic on health: Poor mood was obtained from the combination of two questions, namely: “How often did you feel sad or depressed during the pandemic?” and “How often did you feel anxious or nervous during the pandemic?”. Those who answered “often” or “always” to at least one of the questions were categorized as “often/always”, and those who answered “never” or “rarely” to both were categorized as “never or rarely”. The feeling of loneliness was obtained from the question: “How often did you feel isolated from your family or close friends during the pandemic?”, categorized as “never or rarely” (never or rarely) and “often/always” (often or always). We obtained the pandemic’s impact on sleep from the question: “Did the pandemic affect the quality of your sleep?”, categorized as “did not affect” (did not affect, I continue to sleep well, or I continued to have the same sleep problems) and in “deteriorated during the pandemic” (I started having sleep problems or I already had sleep problems and they got a lot worse). The following question was used to assess the general state of health: “In general, how do you rate your health?”, categorized as “excellent or good” (excellent or good) and “fair to very poor” (moderate, poor, or extremely poor). The onset or deterioration of the back problem was obtained from the questions “Did you start to have back or back pain with the changes in your usual activities During the pandemic?”, categorized as “no” (no) and “yes” (yes, a little or yes, a lot) and “Did changes in your usual activities affect back pain during the pandemic?”, categorized into “deteriorated” (increased a little or increased a lot) and “did not deteriorate” (remained the same or decreased).

Analysis

The proportion of women living with FDOA and FIOA and the percentage distribution of these groups were estimated, according to sociodemographic variables and variables regarding socioeconomic changes, changes in routine activities during the pandemic, and the effects of the pandemic on health (Table 1). Table 2 shows the prevalence of deteriorated SAH among women living with FDOA and FIOA, according to the same variables in Table 1. We calculated the 95% confidence intervals and the independence test between rows and columns (Pearson chi-square) for all estimates.

We estimated the crude bivariate prevalence ratio (PR) of the deteriorated SAH account, according to women living with FDOA or not (FIOA), controlled by age (Table 3), to analyze the factors associated with deteriorated SAH during the pandemic.

Then, three-stage PR hierarchical models were calculated for women living with FDOA (Table 4) and FIOA (Table 5). In the first stage, we considered sociodemographic variables; in the second stage, the variables of socioeconomic changes and routine activities in the pandemic; in the third stage, the variables of the effect of the pandemic on health.

The models were realized using Poisson regression with robust variance, a 95% confidence interval, and a significance level of 5% (or 0.05). Using variables in the three-stage model that were not significant in the bivariate model aimed to identify the variation in the relationship of these variables with the outcome and with factors intrinsic to the pandemic.

Analyses were performed using the SPSS 21 statistical package, considering the sample weight obtained for sample calibration.

Results

Concerning adult women living with older adults, 9.3% (95%CI 8.7-9.9) lived with an FDOA. Most of those living with FIOA were under 60 (66.2%; 95%CI 62.8-69.6) and received less than one MW (59.2%; 95%CI 55.4-63.0). More than 80% lived with two or more people at home (81.4%; 95%CI 78.6-84.2) (Table 1).

With the onset of the pandemic, approximately 22% of women living with FDOA found it exceedingly difficult to perform routine activities (21.9%; 95%CI 18.9-24.9). The proportion was slightly lower (18.3%; 95%CI 17.4-19.2) among those living with independent older adults. One-third of women living with FDOA had their income greatly affected during the pandemic (34.0%; 95%CI 30.6-37.4), a value higher than that of women living with FIOA (27.0%; 95%CI 26.0-28.0).

The constantly poor mood had a higher proportion among women living with FDOA (67.8%; 95%CI 64.4-71.2) than those living with FIOA (59.1%; 95%CI 58.0-60.2). The feeling of loneliness was similar between the groups of women analyzed. Deteriorated sleep affected more women living with FDOA (58.7%; 95%CI 55.1-62.3) than those living with FIOA (46.2%; 95%CI 45.0-47.4).

The sharp increase in domestic work (79.0%; 95%CI 76.0-82.0) was also more frequent among women living with FDOA than in those who did not (65.8%; 95%CI 64.7-66.9). Likewise, the proportion of women with regular to extremely poor SAH was higher among those living with FDOA (45.9%; 95%CI 42.3-49.5) than those who did not (FIOA) (29.7%;95%CI 28.6-30.8). The back problem got worse or started to affect 67.1% of the women living with FDOA (95%CI 63.7-70.5) and 49.7% of those living with FIOA (95%CI 48.5-50, 9) (Table 1).

The prevalence of deteriorated SAH among women living with FDOA or FIOA, according to sociodemographic characteristics and contextual changes due to the pandemic, is shown in Table 2. Approximately 40.3% (95%CI 36.7-43.9) of those living with FDOA had a worse perception of their health with the pandemic, whereas this percentage was 29.6% (95%CI 28.5-30.7) among those living with FIOA.

In general, a higher prevalence of deteriorated SAH was found in the group of people living with FDOA. The prevalence of deteriorated SAH among women living with FDOA was higher among those who had great difficulty carrying out routine activities (69.7%; 95%CI 52.3-82.8), with income greatly affected during the pandemic (65.2%; 95%CI 59.3-71.2), increased domestic work (44.4%; 95%CI 40.4-48.5), frequent poor mood (48.3%; 95%CI 43.9-52.8), deteriorated sleep (57.9%; 95%CI 53.2-62.6), fair to extremely poor SAH (60.4%; 95%CI 55.1-65.7), and who started to have or had a deteriorated pre-existing back problem (54.0%; 95%CI 49.5-58.4) (Table 2).

All the variables were significantly associated with the prevalence of reported deteriorated SAH (Table 2) among those living only with FIOA.

Based on the results presented in the bivariate prevalence ratio model (Table 3), we observed that sociodemographic characteristics were associated with deteriorated SAH among women living with FIOA, but were not associated among women living with FIOA. Among those living with an FIOA, being under 60 (PR=1.67; 95%CI 1.06-1.40), black (PR=1.31; 95%CI 1.21-1.41), and having less than one MW per capita household income (PR=1.20; 95%CI 1.10-1.30) were characteristics associated with the outcome. The health of those living in more densely populated households was less impacted (PR=0.82; 95%CI 0.76-0.89).

The increased difficulty in carrying out daily activities and harm to income and health conditions in the pandemic were strongly associated with deteriorated SAH in both groups analyzed, except for loneliness, which was associated among females living with FDOA.

The most associated variables among women living with FDOA, against those living with FIOA, were the deterioration or onset of a back problem (PR=4.92; 95%CI 3.32-7.29 and PR=2.01; 95%CI 1.85-2.19, respectively), highly-affected income (PR=2.43; 95%CI 2.02-2.92 and PR=1.28; 95%CI 1.18-1, 38, respectively), the difficulty in performing routine activities (PR=2.12; 95%CI 1.80-2.51 and PR=1.78; 95%CI 1.65-1.92, respectively) and the increase in domestic work (PR=1.65; 95%CI 1.22-2.22 and PR=1.50; 95%CI 1.37-1.64, respectively).

The variables of poor mood, affected sleep, and SAH were more strongly associated among those living with FIOA than those living with FDOA.

Table 4 shows the results of the hierarchical model for the group of women living with FDOA. Two sociodemographic variables that were not associated in the first stage of the model started to show an association when considering the changes brought about by the pandemic, namely ethnicity/skin color (from the second stage) and per capita household income in MW (in the last stage). Being black (PR=0.76; 95%CI 0.60-0.96) and having less than 1 MW per capita income (PR=0.78; 95%CI 0.64-0.96) were inversely associated with deteriorated SAH.

Increased domestic work during the pandemic, which was not associated in stage two of the model, was inversely associated (PR=0.77; 95%CI 0.60-0.98) when controlling for the effects of the pandemic on health. The factors most associated with the outcome were poor mood (PR=2.91; 95%CI 1.64-5.14), deteriorated or onset of back problems (PR=1.95; 95%CI 1.24-3.06), affected sleep (PR=1.73; 95%CI 1.32-2.27) and SAH (PR=1.71; 95%CI 1.39-2.11). Feeling isolated, having great difficulty performing daily activities, and income greatly affected by the pandemic were associated, albeit weakly (less than 1.5). Age and household density were not associated with the outcome.

Table 5 shows the results of the hierarchical model for women living with FIOA. All variables were associated in the first and second stages of the model. The association with per capita household income and difficulty performing routine activities lost significance when considering the effects of the pandemic on health (stage three). Moreover, the income greatly affected by the pandemic reversed the direction of the association. The factors most associated with the outcome in the last stage of the model were SAH (PR=2.42; 95%CI 2.22-2.63), poor mood (PR=1.98; 95%CI 1.73-2.27), and affected sleep (PR=1.67; 95%CI 1.51-1.85). The other variables showed weaker associations (PR<1.5).

Discussion

Analyzing the quality of life and health of the principal caregivers and all women living with FDOA is one of the contributions of this article. However, we should consider that the exclusive selection of female respondents makes the role of care central in the analysis of the findings, given that mostly women assume such functions in the domestic space³⁶36 Hirata H. O trabalho de cuidado. SUR 2016; 13(24):53-64.. The few studies that analyzed the effects of living with FDOA showed a high prevalence of depression or anxiety among co-residents³⁷37 Malik MK, Jacob K. Psychological morbidity among co-residents of older people in rural South India: Prevalence and risk factors. Int J Soc Psychiatry 2015; 61(2):183-187.^,3838 Honyashiki M, Ferri CP, Acosta D, Guerra M, Huang Y, Jacob KS, Llibre-Rodrigues JJ, Salas A, Sosa AL, Williams J, Prince MJ. Chronic diseases among older people and co-resident psychological morbidity: a 10/66 Dementia Research Group population-based survey. Int Psychogeriatr 2011; 23(9):1489-1501.. This unequal association was demonstrated in a study conducted in India, which reported that poor, illiterate women with paid employment and FDOA’s spouses were even more susceptible to manifest such symptoms³⁷37 Malik MK, Jacob K. Psychological morbidity among co-residents of older people in rural South India: Prevalence and risk factors. Int J Soc Psychiatry 2015; 61(2):183-187..

This study showed that women living with FDOA had worse socioeconomic conditions and had more frequent negative impacts on their daily lives, health conditions, and income during the pandemic than those living with FIOA. Regarding the results of the hierarchical models, we observed that, except for frequent loneliness, the variables related to the effects of the pandemic on health had the strongest associations with deteriorated SAH between the two groups.

The socioeconomic factors associated with deteriorated SAH followed the patterns of inequality most commonly reported in the literature³⁹39 Romero D, Maia L, Castanheira D. Desigualdade em saúde no século XXI: Conceitos, Evidências e políticas públicas. In: Mattos FAM, Hallak Neto J, Silveira FG, organizadores. Desigualdades: visões do Brasil e do mundo. São Paulo: Hucitec; 2022. among those living with FIOA. Black and poorer women were more vulnerable to the deterioration of their health and quality of life during the pandemic. However, the association with income lost significance when considering the effects of the pandemic on health. These findings corroborate the study by Szwarcwald et al.⁴⁰40 Szwarcwald CL, Damacena GN, Barros MBA, Malta DC, Souza Júnior PRB, Azevedo LO, Machado ÍE, Lima MG, Romero D, Gomes CS, Werneck AO, Silva DRPD, Gracie R, Pina MF. Factors affecting Brazilians' self-rated health during the COVID-19 pandemic. Cad Saude Publica 2021; 37(3):e00182720. on the adult Brazilian population in general.

Socioeconomic inequality in the deteriorated SAH was only identified among women living with FDOA when considering the effects of factors intrinsic to the pandemic. Controlling for such factors, we observed that white and higher-income women had more often a worse self-perception of their health. While outside the expected pattern, this result is similar to the study that evaluated the increased burden of care by family members living with FDOA in Brazil, which showed that those most affected in the first wave of the pandemic were men with higher incomes and white⁹9 Romero DE, Maia LR, Muzy J, Andrade N, Szwarcwald CL, Groisman D, Souza Júnior PRB. O cuidado domiciliar de idosos com dependência funcional no Brasil: desigualdades e desafios no contexto da primeira onda da pandemia de COVID-19. Cad Saude Publica 2022; 38:e00216821..

Some hypotheses could explain the unusual behavior of socioeconomic factors associated with deteriorated SAH in the population of women living with FDOA during the pandemic. Regarding ethnicity/skin color, we should consider that the historical construction of care culture naturalized the role of Black women as caregivers in the domestic environment⁴¹41 Menezes CR, Sá Neto CE, Ferreira T. Branca cansada, preta morta: Apontamentos sobre o trabalho doméstico e de cuidados e o contexto de pandemia de COVID-19. Rev Feminismos 2020; 8(3):190-207.. Slavery and structural racism conditioned Black women to care for their families and white families⁴²42 Davis AY. Women, race & class. Repr. London: Women's Press; 1991.. Thus, it is reasonable to infer that the “care crisis” did not start with the pandemic for Black women. In turn, white women, especially those with higher incomes, started to assume more care responsibilities with the onset of the pandemic⁴³43 Romero DE, Santana D, Borges P, Marques A, Castanheira D, Rodrigues JM, Sabbadini L. Prevalência, fatores associados e limitações relacionados ao problema crônico de coluna entre adultos e idosos no Brasil. Cad Saude Publica 2018; 34(2):e00012817..

The greater coverage of the Family Health Strategy (ESF) among the poorest populations⁴⁴44 Giovanella L, Bousquat A, Schenkman S, Almeida PF, Sardinha LMV, Vieira MLFP. Cobertura da Estratégia Saúde da Família no Brasil: o que nos mostram as Pesquisas Nacionais de Saúde 2013 e 2019. Cien Saude Colet 2021; 26(Supl. 1):2543-2556. may also have impacted the quality of life during the pandemic. The ESF is a frequent gateway for COVID-19 cases and led in some cases standardized social actions in the territory to support the social distancing of its users, established routines for home delivery of medicines and team-territory communication strategies via the internet and telephone for access to information, monitoring sick people, and care continuity. It also partially maintained routine services, such as home visits⁴⁵45 Frota AC, Barreto ICHC, Carvalho ALB, Ouverney ALM, Andrade LOM, Machado NMS. Vínculo longitudinal da Estratégia Saúde da Família na linha de frente da pandemia da Covid-19. Saude Debate 2022; 46:131-151.. However, it should be considered that the deterioration of the model compromised the ESF’s ability to act during the pandemic since the 2017 National Primary Care Policy⁴⁶46 Giovanella L, Franco CM, Almeida PF. Política Nacional de Atenção Básica: para onde vamos? Cien Saude Colet 2020; 25(4):1475-1482. and the new PHC financing model⁴⁷47 Mendes Á, Melo MA, Carnut L. Análise crítica sobre a implantação do novo modelo de alocação dos recursos federais para atenção primária à saúde: operacionalismo e improvisos. Cad Saude Publica 2022; 38:e00164621..

This study showed that lower income levels were more frequent among female adults living with FDOA than those living with FIOA. The high demand for time, money, and loss of opportunities in the labor market²⁸28 José JS. A divisão dos cuidados sociais prestados a pessoas idosas: complexidades, desigualdades e preferências. Sociol Problemas Praticas 2012; 69:63-85. are plausible explanations for the socioeconomic disadvantages of the analyzed population. On the other hand, the more significant impact of the pandemic on the income of those residing with FDOA exacerbated the disadvantages of this group. Although the variable impact of the pandemic on income was not associated with the outcome, income is a known predictor of quality of life and health, either by facilitating access to life’s material needs or the possibility of obtaining adequate nutrition and housing⁴⁸48 Martikainen P, Adda J, Ferrie JE, Davey Smith G, Marmot M. Effects of income and wealth on GHQ depression and poor self rated health in white collar women and men in the Whitehall II study. J Epidemiol Community Health 2003; 57(9):718-723.. The economic fragility of family caregivers in the pandemic has also been evidenced in international studies¹¹11 Bennet MR, Zhang Y, Yeandle S. Caring and COVID-19: hunger and mental wellbeing. Sheffield: CIRCLE, University of Sheffield; 2020.^,4949 Beach SR, Schulz R, Donovan H, Rosland AM. Family Caregiving During the COVID-19 Pandemic. Gerontologist 2021; 61(5):650-660.. Thus, it is essential to implement policies that guarantee income security for this population, especially in health emergencies⁴⁹49 Beach SR, Schulz R, Donovan H, Rosland AM. Family Caregiving During the COVID-19 Pandemic. Gerontologist 2021; 61(5):650-660..

Both deteriorated SAH (in the sense of change), and the general self-perception of health was worse among women living with FDOA. This finding aligns with the literature, which attributes the causes of worse self-perceived health^50,51 to tiredness, stress, and overload of caregivers.

Worse sleep quality was a characteristic associated with deteriorated SAH in both analyzed groups, findings consistent with a study focused on the Brazilian adult population in general⁴⁰40 Szwarcwald CL, Damacena GN, Barros MBA, Malta DC, Souza Júnior PRB, Azevedo LO, Machado ÍE, Lima MG, Romero D, Gomes CS, Werneck AO, Silva DRPD, Gracie R, Pina MF. Factors affecting Brazilians' self-rated health during the COVID-19 pandemic. Cad Saude Publica 2021; 37(3):e00182720.. However, worse sleep quality was more prevalent among women residing with FDOA, which can be explained by care work overload⁹9 Romero DE, Maia LR, Muzy J, Andrade N, Szwarcwald CL, Groisman D, Souza Júnior PRB. O cuidado domiciliar de idosos com dependência funcional no Brasil: desigualdades e desafios no contexto da primeira onda da pandemia de COVID-19. Cad Saude Publica 2022; 38:e00216821. and the significant deterioration of socioeconomic and health conditions in this group.

Back problems are one of the leading causes of loss of quality of life⁵²52 Hoy D, Brooks P, Blyth F, Buchbinder R. The Epidemiology of low back pain. Best Pract Res Clin Rheumatol 2010; 24(6):769-781.. They are strongly associated with self-perceived health⁴³43 Romero DE, Santana D, Borges P, Marques A, Castanheira D, Rodrigues JM, Sabbadini L. Prevalência, fatores associados e limitações relacionados ao problema crônico de coluna entre adultos e idosos no Brasil. Cad Saude Publica 2018; 34(2):e00012817., which explains the strong association with the outcome, evidenced in both groups. However, the prevalence of onset/deteriorated back problems was also more significant among women living with FDOA, possibly due to the increased care⁹9 Romero DE, Maia LR, Muzy J, Andrade N, Szwarcwald CL, Groisman D, Souza Júnior PRB. O cuidado domiciliar de idosos com dependência funcional no Brasil: desigualdades e desafios no contexto da primeira onda da pandemia de COVID-19. Cad Saude Publica 2022; 38:e00216821. and domestic work workload. Studies have shown that both types of work (domestic⁵³53 Dahlberg R, Karlqvist L, Bildt C, Nykvist K. Do work technique and musculoskeletal symptoms differ between men and women performing the same type of work tasks? Appl Ergon 2004; 35(6):521-529. and care⁵⁴54 Suzuki K, Tamakoshi K, Sakakibara H. Caregiving activities closely associated with the development of low-back pain among female family caregivers. J Clin Nurs 2016; 25(15-16):2156-2167.) are associated with back problems, which occur, in general, because these activities demand long working hours, often performed in inappropriate postures and with repetitive movements⁵⁵55 Habib RR, El Zein K, Hojeij S. Hard work at home: musculoskeletal pain among female homemakers. Ergonomics 2012; 55(2):201-211..

The bad mood during the pandemic was the characteristic most associated with the deteriorated SAH among women living with FDOA, besides being more prevalent among them. Because it is a subjective measure, the SAH is directly influenced by the emotional conditions of individuals²⁰20 Washington KT, Oliver DP, Smith JB, McCrae CS, Balchandani SM, Demiris G. Sleep Problems, Anxiety, and Global Self-Rated Health Among Hospice Family Caregivers. Am J Hosp Palliat Care 2018; 35(2):244-249.^,2727 Fayers PM, Sprangers MA. Understanding self-rated health. Lancet 2002; 359(9302):187-188.. The burden of care⁸8 Archer J, Reiboldt W, Claver M, Fay J. Caregiving in Quarantine: Evaluating the Impact of the Covid-19 Pandemic on Adult Child Informal Caregivers of a Parent. Gerontol Geriatr Med 2021; 7:2333721421990150.^,99 Romero DE, Maia LR, Muzy J, Andrade N, Szwarcwald CL, Groisman D, Souza Júnior PRB. O cuidado domiciliar de idosos com dependência funcional no Brasil: desigualdades e desafios no contexto da primeira onda da pandemia de COVID-19. Cad Saude Publica 2022; 38:e00216821. and the fear of infecting a more vulnerable family member⁷7 Schimmenti A, Billieux J, Starcevic V. The four horsemen of fear: An integrated model of understanding fear experiences during the COVID-19 pandemic. Clinical Neuropsychiatry 2020; 17(2):41. are possible explanations for the worse emotional state of those living with FDOA.

Given the observed situation, the need to improve public policies that support family members living with the FDOA is evident. Camarano³⁴34 Camarano AA. Cuidados para a população idosa e seus cuidadores: demandas e alternativas. Nota Tecnica Ipea 2020; 64:20. points out intersectoral policies that could support FDOA family care, such as financial support for caregivers, the inclusion of caregivers in the social security system due to the impact of the older adult’s death on household income, care qualification, and providing a formal caregiver regularly.

Study limitations must be considered. An online survey may have biased the sample, selecting those with better socioeconomic conditions, access to digital media, and higher schooling. However, the large number and weighting of the sample mitigated this limitation. Another limitation is assuming that only one respondent from each household participated in the survey. Nevertheless, the results show that the analysis was sensitive enough to point out the worst conditions in the quality of life and health of women living with FDOA during the pandemic.

References

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