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Abstract

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.
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... The fact that caregiving is mainly assumed by women (mostly spouses, but also daughters) is consistent with previous studies [2]. Gender differences in informal caregiving may be related to the existing culture, where women internalize the role of caregiving [37] and are more willing than men to leave work to be able to take on caregiving tasks. Not only are mostly women who assume caregiving more often, but they also experience the impact of caregiving differently. ...
... Furthermore, it highlights the importance of access to respite care for CG's stroke survivors and the need for improvements in work-life balance policies. Considering the heterogeneity among CG, it should incorporate the gender perspective to tailor recourses to the differential needs of men and women [37,38]. ...
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Purpose We aimed to describe the intensity of care and its consequences on informal caregivers of stroke survivors according to the degree of care receivers’ functional dependence for activities of daily living; and to identify the factors associated with caregivers’ care-related quality of life. Methods Cross-sectional analysis of prospective data collected in a cost-utility study alongside the RACECAT trial in Catalonia (Spain). One-hundred and thirty-two care receiver-caregiver pairs were interviewed six months after stroke. Functional dependence for activities of daily living was measured with the Barthel index. We assessed caregivers care-related quality of life with the CarerQoL, which measures seven dimensions of subjective burden (CarerQoL-7D) and a happiness score (CarerQoL-VAS). We evaluated the association between characteristics of informal caregivers, characteristics of care receivers, and intensity of care, and the caregiver’s care-related quality of life (subjective burden and happiness) in a hypothesized model using a structural equation model. Results Of the 132 caregivers, 74,2% were women with an average age of 59.4 ± 12.5 years. The 56.8% of them were spouses. The care intensity ranged from a mean of 24h/week for mild to 40h/week for severe dependence. Most caregivers (76.3%) were satisfied with their task, regardless of dependence, but showed increasing problems in caring for severely dependent persons. Being a woman (coeff. -0.23; 95%CI: -0.40, -0.07), spending more time in care tasks (coeff -0.37; -0.53, -0.21) and care receiver need of constant supervision (coeff 0.31; -0.47, -0.14) were associated with higher burden of care, irrespective of the degree of dependence. Caregiver burden (coeff 0.46; 0.30–0.61) and care receiver anxiety or depression (coeff -0.19; -0.34, -0.03) were associated with lower caregiver happiness. Conclusions The findings suggest the importance of developing mainly two types of support interventions for caregivers: respite and psychosocial support. Especially for women with high caring burden and/or caring for persons with high levels of anxiety or depression.
... Not all elderly people are dependent, although obviously ageing does increase situations of dependency (Casado-Mejía & Ruiz-Arias, 2016;Del Río-Lozano et al., 2013). Many elderly people play an active socio-family role, very often in caregiving, an essential economic activity that is fundamental to the maintenance of life (Colliére, 1999). ...
... Gender roles have been shown to have a profound and comprehensive impact on women's health (Valls-Llobet, 2001). By this, we mean the set of expectations that patriarchal society establishes about behaviours, where the feminization of care is taken for granted as women are considered natural caregivers (Del Río-Lozano et al., 2013;Horsfall & Dempsey, 2015). ...
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In this study, we explored the impact of caregiving in quality of life and health perceptions and outlined the profile of grandparent caregivers in Andalusia (Spain) in terms of a range of sociodemographic variables related to the care of their grandchildren. A sample of 171 participants (21.6% men) completed the Health-related Quality of Life (HRQoL) questionnaire and another ad hoc one providing sociodemographic and caregiving data. We studied the relationships between these variables and HRQoL using ANOVA, chi-square and Multiple Linear Regression. We found a mainly female profile for the care of grandchildren and interesting relationships for the physical and mental components of HRQoL. Some relationships were marked by gender: caregiving for pleasure was more often the motive for men while by imposition was more common among women. We discuss the impact of caregiving on health according to the Self-Determination Theory and suggest practical implications derived from the main findings.
... This gendered division of caregiving tasks aligns with cultural stereotypes prevalent in Andalusian society [23,24]. However, when considering the standard deviation, most tasks tend to be perceived as gender neutral. ...
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Background/Objectives: This study aims to examine the impact of the caregiving role on quality of life, perceived burden, gender dissonance, and self-stigma among male caregivers of individuals with multiple sclerosis (MS) in Andalusia, Spain. Methods: A total of 44 male caregivers participated, completing questionnaires on sociodemographic and functional characteristics of the persons with MS (PwMS) they cared for. Measures included the Caregiving Tasks in Multiple Sclerosis Scale (CTiMSS), the Zarit Burden Interview (ZBI), quality of life (WHOQOL-BREF), gender perception, and self-stigma. Data analysis employed ANOVA and regression analyses to assess the relationship between perceived burden and quality of life. Results: Male caregivers experienced significant burden, particularly in instrumental and social-practical caregiving tasks, with a mean score of 23.9 on the ZBI. Perceived burden was inversely related to quality of life, notably impacting physical and psychological health. Sixteen percent of caregivers reported cognitive self-stigma, though without affective or behavioral manifestations. Gender dissonance was observed, as men often perceived certain caregiving tasks as feminine; however, many integrated this role within their masculine identity. Conclusions: Male caregivers of PwMS face the dual burden of caregiving demands and traditional gender expectations. While gender dissonance and low levels of self-stigma were observed, most caregivers adapted by integrating caregiving into their identity. These findings highlight the need for tailored interventions to address their unique challenges and enhance their well-being.
... For daughters or daughters-in-law, it appeared that the assumed cultural values of caring for each other did not always apply in the carer's situation. This gendered caring can put significant strain on carers to comply with their responsibilities within their own family as well as in their family-in-law (del-Pino-Casado et al., 2012;del Río-Lozano et al., 2013;Tannenbaum et al., 2016). This is especially worrisome in light of Williams et al.'s (2017) findings, which showed that women experienced more physical health issues when providing informal care. ...
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Highlights • This study used an approach combining intersectionality and epistemic (in)justice. • Generating theoretical and practical insight in lived experiences of migrant carers. • Carers face racialization and silencing, impacting their health and wellbeing. • Care organizations should put diversity-response policies into practice. • Dialogue to address discrimination in care networks should be emphasized. Abstract This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.
... The CUIDAR-SE study, although primarily quantitative in nature, recognizes the value of incorporating qualitative methodologies to delve deeper into the impact of crises and social norms on caregiving. Past endeavors by the research team have involved the use of qualitative methods within this domain [45]. This experience underscores the team's commitment to continuing this methodological integration in future studies, with the aim of augmenting the findings of the CUIDAR-SE investigation and mitigating this methodological limitation. ...
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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
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Objective The purpose of this study was to explore experiences of family and professional caregivers of persons with dementia in order to design a tailored community-based support programme. Design A two-stage study was deployed. First, qualitative research draws on three focus groups. Two of these comprised family caregivers and the third was made up of care provision professionals. Thematic content analysis was conducted by interpretative description for applied practice. Second, an experience-based codesign methodology was applied to design a tailored support programme in accordance with carers’ demands and contextual realities. Setting and study period Rural region in Catalonia, at northeast of Spain. March–June 2019. Participants We interviewed 12 family caregivers and 8 primary care providers. Results 10 main themes were identified: caregivers’ feelings, repercussions of caregiving in caregivers’ lives, education about dementia and caring skills, education about time management and self-care, caregivers’ needs to receive more information and training, improved patients’ follow-up and social assistance and more psychologic support. Finally, three themes related to caregivers’ demands: social services resources, multidisciplinary approach programmes and support from other caregivers. From these results, a multicomponent, professionally led community-based intervention was designed. The main components were the following: education and caring skills, professional psychological support, and social and community resources. Conclusion This study allowed the design of a multicomponent support intervention for family caregivers of persons with dementia aimed at reducing their burden and improving their quality of life in ways consistent with their actual needs and the available local resources.
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Family members living with and caring for a relative diagnosed with schizophrenia may experience severe challenges that can result in secondary stress and influence various life domains. This article is based on a study which aimed to explore and describe the lived experiences of these family members. The study applied a qualitative research approach with phenomenology as the strategy of inquiry. The study implemented voluntary snowball sampling to select participants for the study. Data collection consisted of unstructured interviews followed by thematic analysis to establish the findings of the research. These findings specified the challenges experienced by family members caring for a relative with schizophrenia. The findings also indicated the social support and social work interventions which can mitigate or prevent the adverse effects when family members care for a relative diagnosed with schizophrenia. Effective and comprehensive social work services, which are family sensitive and inclusive, are imperative. Active engagement with both the family carer(s) and relative diagnosed with schizophrenia can contribute to minimising these adverse effects. Keywords: carers, deinstitutionalisation, family members, mental health, schizophrenia, social work
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This integrative review aims to understand how family caregivers think about caring for a disabled person. The quest for the studies was performed in the databases Scopus, Web of Science, PsycInfo, INDEXPSI; LILACS and, SciELO. The period that comprises the last ten years of research has been stipulated (2010-2020). After applying the inclusion and exclusion criteria, 19 articles were selected. Data analysis was categorized into five major subjects: (a) Caring and its emotional, psychological, physical, behavioral, and social implications; (b) Caring as solitude; (c) Caring and its practical demands; (d) Caring and coping strategies; (e) Disability caring and representation. The results showed that caring is understood according to the culture and beliefs about the disability, in addition it causes different types of implications for family caregivers, such as discrimination, anxiety, depression, loneliness and, financial difficulties.
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Care has appeared as a new dimension of social reality and research field, until not so long ago invisible. Feminist theory has identified the complex social practices it is made of as well as the ethics of responsibility which underpin it, all of it, according to gilligan, constructed through the long process of women’s socialization. When men become involved in care, its female specificity is challenged and new questions on gender identity arise. On the other hand the dichotomous character of gender is discussed by authors like Fausto-Esterling or Butler; not just women but also men are problematised. If in the forties of the past century Simone de Beauvoir goes ahead sociological constructivism when she asks how is a woman made, at the beginning of the 21st it makes sense to ask what is a man. El cuidado de las personas emerge como un nuevo ámbito de la realidad y campo de conocimiento, hasta ahora invisible. Desde la teoría feminista se identifican las prácticas sociales complejas en que consiste, así como la ética de la responsabilidad en que se sustenta, construida, según Gilligan, a lo largo del proceso de socialización femenino. Al incorporarse los hombres al cuidado se replantea la especificidad femenina de tal actividad y se abren nuevos interrogantes acerca de la identidad de género. Por otra parte, el carácter dicotómico del género se pone en cuestión desde la perspectiva de autores como Fausto-Esterling o Butler, problematizando no solo lo femenino sino también lo masculino. Si en los años cuarenta del pasado siglo Simone de Beauvoir se adelanta al constructivismo sociológico preguntándose cómo se hace una mujer, a comienzos del siglo XXI cobra sentido preguntarse qué es un hombre.
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Tras analizar la naturaleza y las consecuencias pasadas y presentes de la globalización, el artículo se concentra en los territorios locales. Éstos son considerados como espacios sociales que constituyen unos ámbitos o escenarios especialmente adecuados para analizar la materialización en ellos de lo global o glocalización. A partir de la tendencia evolutiva de dichos territorios, desde el localismo hacia su creciente glocalización, se trata de explicar sus dinámicas sociales. Dichas dinámicas, conceptuadas por el autor como desterritorialización y reterritorialización, están estrechamente vinculadas a cambios en las expectativas y en las posiciones de poder y/o de influencia de los respectivos grupos sociales o clases que configuran o son configurados por los territorios locales, a la vez que suelen implicar reestructuraciones de las funciones socioeconómicas de los territorios y resignificaciones simbólico-culturales de los mismos. After analyzing the nature, and the past and present impact of globalization, the article focuses on local territories. These are viewed as social spaces that constitute realms or scenarios especially appropriate to examine the implementation of the global, or glocalization. From the evolutionary paths of these territories, from localism to growing glocalization, the author sets out to explain their social dynamics. These are conceived as deterritorialization and reterritorialization, processes which are closely linked to changes in expectations and in positions of power and/or influence of the respective social groups or classes configuring and/or configured by local territories, and which at the same time entail a restructuring of socio-economic functions of the territories and their symbolic and cultural resignifications.
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Objective To analyze one part of the social benefit derived from non-professional (informal) caregivers by analyzing the hypothetical amount of resources that would need to be invested if informal care were substituted by formal care.
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La prestación de servicios de carácter informal a personas discapacitadas y otros dependientes no es ciega a la cuestión de género. La utilización de la Encuesta de Discapacidad, Autonomía personal y situaciones de Dependencia (EDAD 2008) permite el análisis de consecuencias que para unas y para otros tiene el desempeño de estas tareas. En este trabajo se analiza a las personas que prestan cuidados a personas discapacitadas en España, con el objetivo de poner de manifiesto cómo esta atención condiciona distintos ámbitos de la vida de mujeres y hombres, y lo hace de forma diferenciada. Para alcanzar este objetivo se han empleado tanto análisis descriptivos como técnicas econométricas (análisis multivariante). Los resultados permiten afirmar que existe una fuerte feminización de las tareas de cuidado, lo que incide tanto en la esfera pública de las mujeres, pues condiciona sus oportunidades sociales y laborales, como su esfera privada, pues afecta a sus condiciones de vida, con los costes directos e indirectos que esto conlleva.
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The purpose of this research was to examine the profi les of those who provide informal care to disabled people. Among other issues we assess how care giving for disabled people constraints labor market opportunities of caregivers, particularly for women. To this aim the paper has followed two alternative econometric strategies to model the likelihood of being working and the amount of time devoted to care-giving, by those providing it. First, we considered the two decisions as independent from each other (i.e. we assumed the number of hours of care is exogenous -does not depend- on the probability of working in the labor market and vice versa). Thus we estimate two separate equations, the fi rst to estimate the correlation between the number of hours of care provided to the disabled by the informal caregiver against a set of variables that potentially could condition on this (by Ordinary Least Squares, OLS); and the second to determine the effect of some factors on the probability that the caregiver combines this activity with the participation in the labor market -using a Probit regression procedure-.
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Background. With an aging population and public policies that limit accessible and affordable formal care services, informal caregivers, largely women, will continue bearing the overwhelming responsibility for home and long-term care services provision. Objectives. This study examined gender differences among informal caregivers in caregiving activities, intensity, challenges, and coping strategies and assessed the differential effects of caregiving on their physical and emotional well-being. Research Design. Cross-sectional study conducted between May and September 1998. Subjects. Telephone interviews were conducted with a randomly selected, nationally representative sample of 1002 informal caregivers. Measures. Caregivers’ sociodemographic, and physical and emotional health characteristics; caregiving type and intensity; formal care support; difficulty with care provision; unmet needs; coping strategies; and the care recipients’ health and relationship with caregiver were examined between the genders using descriptive and multivariate analyses. Results. Compared with men caregivers, women caregivers were significantly more likely to be 65 years of age or older, black, married, better educated, unemployed, and primary caregivers; provide more intensive and complex care; have difficulty with care provision and balancing caregiving with other family and employment responsibilities; suffer from poorer emotional health secondary to caregiving; and cope with caregiving responsibilities by forgoing respite participation and engaging in increased religious activities. Conclusions. Informal caregivers, particularly women, are under considerable stress to provide a large volume of care with little support from formal caregivers. Program planners, policy makers, and formal care providers must act together to provide accessible, affordable, and innovative support services and programs that reduce family caregiving strain.