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

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: This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. METHODS: The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses 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 3 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 pandemic-related challenges. As of March 2024, a total of 1294 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 the health impacts of caregiving in Spain. The incorporation of a 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. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58440.

Changes in Caregiver Personal Support Networks: Gender Differences and Effects on Health (CUIDAR-SE Study).

Technological changes have led to important advances in medical diagnoses and treatments that prolong the informal care process. Support from the personal network of informal caregivers is an undervalued resource and the changes that have occurred over time are unknown. The aim of this study was to analyze the changes in personal network support among informal caregivers and to examine the effect of these changes on self-perceived caregiver health, with a focus on differences between men and women and caregivers with high and low levels of burden We also investigated caregiver perceptions and explanations of changes to their support network (losses and additions and no change). Using a mixed-methods approach, data were obtained from 32 caregivers that were intentionally selected in Spain, who were interviewed twice with a one-year interval. In the quantitative phase, personal networks analysis was performed with Egonet software, which obtained data on the composition and functional content in social support from 1600 personal relationships (25 alters for each ego in the two waves). In the qualitative phase, semi-structured interviews were conducted in the two waves with a guide in order to explore the changes in informal support resources over time. The selected men with high levels of burden pointed out a loss of network support with more discouraging reports compared with the low-burden male caregivers. Furthermore, the selected women with low burden levels mentioned losses too; however, their reports were more positive. Women reported improved health, especially those with low burden scores in the first wave and those who did not lose support. Caregivers with a high initial burden and who lost support reported worse health, particularly men and women with a strong sense of duty toward care. Social support from personal networks is important for caregiver health and its effects are influenced by gender roles. Our findings could help by improving the relational and social capital of informal caregivers and adapting them to the new needs of formal home care systems.

Health, Work, and Social Problems in Spanish Informal Caregivers: Does Gender Matter? (The CUIDAR-SE Study).

(1) Background: The aim of this study was (i) to analyze problems faced by informal caregivers in three areas of their life: health, work and finances, and family and social relationships, (ii) to investigate the main determinants of these problems, and (iii) to explore differences between men and women. (2) Methods: The study population consisted of people aged ≥18 years living in a family home who were providing unpaid care to a dependent person in the same or another home and who were registered as caregivers with the Primary Health Care District of Granada or the Provincial Council of Gipuzkoa. Several logistic regression models were built to analyze the likelihood of caregivers experiencing health, work-related, or social problems as a result of their caregiving responsibilities. (3) Results: Informal female caregivers were more likely to experience problems attributed to caregiving than their male counterparts, particularly in the areas of health and work. Additional factors associated with an increased likelihood of problems were low perceived social support, performance of ungratifying tasks, and fewer years as a caregiver. (4) Conclusions: Informal caregivers in Spain face significant problems as a result of their caregiving duties, and the impact on men and women is different. Policies and interventions to mitigate the negative effects of unpaid caregiving should incorporate differential strategies to meet the specific needs of male and female caregivers in different caregiving contexts.

[Caregiving and the COVID-19 pandemic from a gender perspective]. / Cuidados y abordaje de la pandemia de COVID-19 con enfoque de género.

In the current pandemic situation, the literature urges to consider the gender approach to avoid deepening existing inequalities, as already happened in previous epidemics. This field note aims to describe an experience of application of gender analysis to the impact of the pandemic on the public health, carried out by the students and teachers of the Diploma of Gender and Health of the Andalusian School of Public Health-University of Granada. The activity consisted of a review of the literature on caregiving and its impact on health in the context of health crisis, a gender analysis of information and shared reflection and debate. The debate was grouped into around five reflections, in which the care was putted in the center. Every reflection was linked to the need to incorporate the gender approach in measures and specific actions.

[Personal support networks and informal care: differences by sex and place? (CUIDAR-SE II study)]. / Redes personales de apoyo y cuidado informal: ¿diferencias por sexo y territorio? (estudio CUIDAR-SE II).

OBJECTIVE: To compare the composition and functionality of social support of personal networks of caregivers of Granada and Gipuzkoa (Spain) according to sex and province. METHOD: Cross-sectional study with personal network analysis methodology. A sample of 66 caregivers segmented by sex in each province was selected. We collected variables of composition, functional and relational content in social support of 1,650 personal relationships of the networks studied. The EgoNet software was used for the collection, analysis and graphic representation of the networks. The association of the characteristics of the network with sex (of the caregivers and those who make up their networks) was measured, using Chi-square. The links within the networks were analyzed. RESULTS: The networks of caregivers in Granada are more feminized than those in Gipuzkoa. The women of Gipuzkoa have less familiar networks than those of Granada and with a greater number of relationships among the people who support them. They also have more support from men than women in all the tasks analyzed, except in attention to the disease. In both provinces, male caregivers show in their networks more women who help in specific care tasks than men. Only in activities outside the home in Granada there are more men who help than women (76.1% vs. 57%; p=0.026). CONCLUSION: Gender differences between provinces can be seen in the composition of the networks and in the way in which men and women receive and offer support in care.

[Gender inequalities in authorship of the main Spanish medical journals in 2017]. / Desigualdades de género en la autoría de las principales revistas médicas españolas durante el año 2017.

INTRODUCTION: Some studies have shown a lower female participation in scientific publications. The objective of this study is to analyse the gender inequalities in the main Spanish journals of medical publications. MATERIAL AND METHOD: Cross-sectional study of the main Spanish medical journals classified by SCImago Journal & Country Ranking (n=24) and their publications (n=3.375), during the year 2017. Women/men ratio in authorship was calculated for all journals and types of papers. Bivariate analyses were developed with the type of article as the dependent variable, and gender, institution, and country of the first and last authors as the independent variables. Logistic regression models were performed to calculate adjusted odds ratios (aOR) and their 95% confidence intervals (95% CI) of the types of papers according to authorship gender, institution, and country. The statistical program used was R. RESULTS: The total number of authors was 16,252 (44.2% women, 53.9% men, and 1.9% non-identified gender). Women represented 46% of the first authors and 33.5% of the last ones. Women were the first authors of Editorials less often than men (aOR 0.39; 95% CI 0.30-0.51), but more often in Originals (aOR 1.55; 95% CI 1.33-1.80). Women were the last authors with less frequency in all types of papers, especially in Editorials (aOR 0.50; 95% CI 0.35-0.70). The women/men ratio in authorship was less than 0.80 in 10 of 26 journals analysed (41.7%). CONCLUSIONS: These results show the gender inequalities in the authorship of the main Spanish medical journals in 2017, especially as first authors and Editorials.

[Multilevel analysis of global scientific production on parenthood, human development and gender equality]. / Análisis multinivel de la producción científica mundial sobre paternidad, desarrollo humano e igualdad de género.

OBJECTIVE: To compare worldwide differences in scientific production on fatherhood and motherhood (quantity, start time and evolution over time), to determine the international geographic distribution of articles on fatherhood, and, to examine the relationship between the human development index (HDI), the global gender gap index (GGGI), and the number of articles on fatherhood. METHOD: Descriptive analysis of articles on fatherhood and motherhood from the Scopus database 1788-2016, and longitudinal analysis 2006-2015 of the relationship between scientific production on fatherhood, the HDI and the GGGI, by means of a multilevel model with Poisson distribution and extra-Poisson parameter. RESULTS: We observed four times fewer articles on fatherhood than on motherhood. Articles on fatherhood were developed later than those on motherhood, and most (85%) were published in the last two decades, when they increased more than articles on motherhood. We identified geographical inequalities, with North America, Europe and Oceania leading the way. There is a statistically significant relationship between the increase in the HDI and the GGGI in world countries, and the increase in the articles on fatherhood. CONCLUSIONS: Socially built knowledge around fatherhood and motherhood is unequal. It is essential to develop non-parcelled, undivided and non- reductionist knowledge in the reproductive field. It is necessary to make men visible as fathers in the scientific sphere, to break gender stereotypes, and to incorporate childrearing co-responsibility in social policies and practices as a matter of right.

Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study.

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

The economic value of time of informal care and its determinants (The CUIDARSE Study).

OBJECTIVE: The main aims of this paper are to analyse the monetary value of informal care time using different techniques and to identify significant variables associated with the number of caregiving hours. DATA AND METHODS: A multicentre study in two Spanish regions in adult caregivers was conducted. A total sample of 604 people was available. A multivariate analysis was performed to identify the variables associated with the number of hours of caregiving time. In the monetary valuation of informal care provided, three approaches were used: replacement cost method, opportunity cost and contingent valuation (willingness to pay and willingness to accept). RESULTS: The main determinants of the amount of time of informal care provided were age, gender, the level of care receiver´s dependence and the professional care services received (at home and out of home). The value estimated for informal care time ranges from EUROS 80,247 (replacement cost method) to EUROS 14,325 (willingness to pay), with intermediate values of EUROS 27,140 and EUROS 29,343 (opportunity cost and willingness to accept, respectively). Several sensitivity analyses were performed over the base cases, confirming the previous results. CONCLUSIONS: Time of informal care represents a great social value, regardless of the applied technique. However, the results can differ strongly depending on the technique chosen. Therefore, the choice of technique of valuation is not neutral. Among the determinants of informal care time, the professional care received at home has a complementary character to informal care, while the formal care outside the home has a substitute character.

[Gender inequalities in the impacts of informal elderly caregiving in Gipuzkoa: CUIDAR-SE study]. / Desigualdades de género en los impactos del cuidado informal de mayores dependientes en Gipuzkoa: Estudio CUIDAR-SE.

OBJECTIVE: The provision of informal care determines the existence of health inequalities, as well as gender inequalities, because of women being the most frequent caregivers. The objectives of this study were to characterize the informal caregivers of elderly dependents in Gipuzkoa, to know the impact of caring on health and health related quality of life (HRQoL), and to explain the relationship between sex and consequences attributable to care. METHODS: Cross-sectional study analyzing health (self-perceived health and GHQ-12) and HRQoL (EQ-5D-5L) data of 123 women and 103 men who took care of a dependent elderly and participated in the first wave of the CUIDAR-SE study in Gipuzkoa. A descriptive study was performed, and a logistic regression analysis was carried out to examine the association between sex and the consequences attributable to care. RESULTS: Women and men were over 60 years old, married, with primary education or less, and took care of their parents mainly. Women presented worse perceived health (46.3% vs 32.0%) and mental health (23.3% vs 13.9%), and more problems in the dimensions of anxiety/depression (35.0% vs 21.4%) and pain/discomfort (52.8% vs 31.1%) of EQ-5D-5L.The regression model showed greater risk of fatigue (OR = 2.83; 95% CI:1.53-5.24) and burden (OR = 1.87; 95% CI: 1.06-3.29) among women than among men. CONCLUSIONS: There are gender inequalities in the provision of informal care to dependent elderly people in Gipuzkoa, with women having a greater impact on their health and HRQoL than men. Considering the organization of care in this province, it will be necessary to design improvement actions more suited to the needs of caregivers.

OBJETIVO: La prestación de cuidados informales determina la existencia de desigualdades en salud, a las cuales se suman las desigualdades de género por el papel mayoritario de las mujeres en dicha prestación. Los objetivos de este estudio fueron caracterizar a la población cuidadora informal de mayores dependientes en Gipuzkoa, conocer los impactos de cuidar sobre la salud y la calidad de vida relacionada con la salud (CVRS), y explicar la relación entre el sexo y las consecuencias atribuibles al cuidado. METODOS: Estudio transversal en el que se analizaron datos de salud (salud percibida y GHQ-12) y CVRS (EQ-5D-5L) de 123 mujeres y 103 hombres cuidadores de mayores dependientes que participaron en la primera oleada del estudio CUIDAR-SE en Gipuzkoa. Se realizó un estudio descriptivo, y un análisis de regresión logística para examinar la asociación entre el sexo y las consecuencias del cuidado. RESULTADOS: Mujeres y hombres tenían más de 60 años, estaban casadas/os, tenían educación primaria o inferior, y cuidaban a sus progenitores fundamentalmente. Las mujeres presentaban peor salud percibida (46,3% vs 32,0%) y mental (23,3% vs 13,9%), y más problemas en las dimensiones de ansiedad/depresión (35,0% vs 21,4%) y dolor/malestar (52,8% vs 31,1%) de laEQ-5D-5L. El modelo de regresión mostró mayor riesgo de cansancio (OR=2,83; IC95%:1,53-5,24) y sobrecarga (OR=1,87; IC95%:1,06-3,29) en mujeres que en hombres. CONCLUSIONES: Existen desigualdades de género en la provisión de cuidados informales a mayores dependientes en Gipuzkoa, mostrando las mujeres un mayor impacto en su salud y CVRS que los hombres. Considerando la organización del cuidado en esta provincia, será necesario el diseño de acciones de mejora más adecuadas a las necesidades de las personas cuidadoras.

Gender Differences in Social Support Received by Informal Caregivers: A Personal Network Analysis Approach.

Social support is an important predictor of the health of a population. Few studies have analyzed the influence of caregivers' personal networks from a gender perspective. The aim of this study was to analyze the composition, structure, and function of informal caregiver support networks and to examine gender differences. It also aimed to explore the association between different network characteristics and self-perceived health among caregivers. We performed a social network analysis study using a convenience sample of 25 female and 25 male caregivers. A descriptive analysis of the caregivers and bivariate analyses for associations with self-perceived health were performed. The structural metrics analyzed were density; degree centrality mean; betweenness centrality mean; and number of cliques, components, and isolates. The variability observed in the structure of the networks was not explained by gender. Some significant differences between men and women were observed for network composition and function. Women received help mainly from women with a similar profile to them. Men's networks were broader and more diverse and they had more help from outside family circles, although these outcomes were not statistically significant. Our results indicate the need to develop strategies that do not reinforce traditional gender roles, but rather encourage a greater sharing of responsibility among all parties.

Health-related quality of life in Spanish informal caregivers: gender differences and support received.

PURPOSE: We analyzed gender differences in health-related quality of life (HRQoL) and associated factors between informal male and female caregivers in Spain. It is important because of growing rates of dependent people and dwindling public resources. METHODS: We conducted a cross-sectional study of 610 informal caregivers (265 male and 345 female) using an ad hoc structured questionnaire. We performed a descriptive analysis and used multivariate logistic regression to analyze the risk of poor HRQoL, measured with the EQ-5D-5L, according to caregiver sex, sociodemographic characteristics of caregivers and dependents, caregiving circumstances, and support received. RESULTS: Male caregivers were older than women were, and cared more often for their partners. More women used family caregiving allowance (FCA), respite care services, and counseling services, while more men used paid help, home help, and other forms of instrumental help. Women had worse HRQoL than men, particularly in the pain/discomfort dimension. In addition to older age and poor previous health, caring for a partner (OR = 2.379), for a person with major dependence (OR = 1.917), low social class (OR = 1.634), and low social support (OR = 2.311) were factors associated with poor HRQoL. Receiving FCA was associated with better HRQoL (OR = 0.319). Controlling for all these variables, women had 131% more odds than men to have poor HRQoL. CONCLUSIONS: Male and female caregivers in Spain differ in received support and how their HRQoL is affected. These differences are important to design interventions to promote more equitable sharing of care responsibilities and better caregiver health.

[Gender inequalities in research in public health and epidemiology in Spain (2007-2014)]. / Desigualdades de género en la investigación en salud pública y epidemiología en España (2007-2014).

OBJECTIVE: To analyse gender inequalities in research on public health and epidemiology in Spain for the period 2007-2014. METHOD: A descriptive study was conducted by sex of leadership positions in the Centre for Biomedical Research Network (CIBER), especially in the subject area of epidemiology and public health (CIBERESP) in 2014; scientific societies of public health (SESPAS) and epidemiology (SEE) 2009-2014; research projects requested (13,320) and financed (4,699), and monetary amounts of calls for Strategic Action in Health (AES), 2007-2013. RESULTS: Women were clearly under-represented in positions of leadership and in research excellence in public health (CIBER), with a predominance of men in decision-making positions. Although research projects led by women in AES increased slightly between 2007 and 2013, among proposed projects this figure was less than 50%, with the exception of the public health commission. The gender gap was even greater in funded projects. Projects led by men were more likely to be funded, representing 29% in public health. There was also a persistence of horizontal gender segregation in positions of scientific recognition in the SESPAS and SEE Congresses. CONCLUSIONS: The overrepresentation of male leaders in public health research in Spain can be understood as an indicator and a consequence of androcentrism in scientific societies and professional groups. This sexist situation threatens the existence of innovative products and services from a gender perspective that respond to the needs and demands of society as a whole. More women are needed in research incorporating this perspective.

Gender identity in informal care: impact on health in Spanish caregivers.

We examined the influence of gender identity on men's and women's perceptions of assuming the caregiver role to identify different coping strategies and the effects on caregiver health and quality of life. The study, performed in Andalusia, Spain, was based on a sociological analysis of the narratives produced during semistructured interviews with primary informal caregivers (16 men and 16 women) of different profiles. We observed a cultural assumption that women should assume the caregiver role and found that women shouldered the bulk of caregiving responsibilities and did not usually seek support. This might explain the high prevalence of chronic health disorders, stress, anxiety, depression, neglect of health, and social isolation we observed among women caregivers. Because the caregiver role was not socially imposed on men in our setting, men caregivers adopted a flexible attitude and tended to seek external support before their health and quality of life were seriously affected.

Performing masculinity, influencing health: a qualitative mixed-methods study of young Spanish men.

BACKGROUND: The literature shows how gender mandates contribute to differences in exposure and vulnerability to certain health risk factors. This paper presents the results of a study developed in the south of Spain, where research aimed at understanding men from a gender perspective is still limited. OBJECTIVE: The aim of this paper is to explore the lay perceptions and meanings ascribed to the idea of masculinity, identifying ways in which gender displays are related to health. DESIGN: The study is based on a mixed-methods data collection strategy typical of qualitative research. We performed a qualitative content analysis focused on manifest and latent content. RESULTS: Our analysis showed that the relationship between masculinity and health was mainly defined with regard to behavioural explanations with an evident performative meaning. With regard to issues such as driving, the use of recreational drugs, aggressive behaviour, sexuality, and body image, important connections were established between manhood acts and health outcomes. Different ways of understanding and performing the male identity also emerged from the results. The findings revealed the implications of these aspects in the processes of change in the identity codes of men and women. CONCLUSIONS: The study provides insights into how the category 'man' is highly dependent on collective practices and performative acts. Consideration of how males perform manhood acts might be required in guidance on the development of programmes and policies aimed at addressing gender inequalities in health in a particular local context.