Caregivers during prolonged hospital stays in pediatrics: care strategies and public policiesAbstract
This research analyzed the effects of the care process on caregivers during long-term hospitalizations in a pediatric unit of an university hospital in Rio de Janeiro, Brazil. Thematic oral history interviews were used, supported by the theoretical concept of life narratives. The results were evaluated university using a hermeneutic-dialectical approach, synthesized into the following analytical categories: Child and Adolescent Illness and Changes in the Life Dynamics of Caregivers and Family; Impacts of Prolonged Hospitalizations on Family Income; The Relational Dimension of Care; Leisure and Self-Care for Living and Caring. The theoretical-analytical categories were multiple family arrangements; racial and sexual division of labor; decolonial feminism; care as a social right; and health care from a broader perspective. Women are the primary caregivers of patients with prolonged hospital stays in pediatrics, and they often abandon their own plans to live for the sake of their dependents. They seek survival strategies and institutional responses. The current National Care Policy (Brazil, 2024), along with other policies and interlinked with the struggle for a more just society, can be considered a way to seek recognition of the dignity of these caregivers.
Key words:
Right to care; Health policy; Caregivers in pediatrics; Racial and sexual division of labor
Resumo
A pesquisa analisou os efeitos do processo de cuidado em acompanhantes nas internações de longa permanência numa unidade pediátrica de um hospital universitário no Rio de Janeiro, Brasil. Utilizou-se a entrevista em história oral temática empregada com o apoio teórico do conceito de narrativas de vida. Os resultados foram avaliados pela abordagem hermenêutica-dialética, sintetizadas nas categoriais de análise: Adoecimento da Criança e do Adolescente e Mudanças na Dinâmica de Vida das Cuidadoras e Família; Impactos das Internações Prolongadas na Renda Familiar; A Dimensão Relacional do Cuidado; Lazer e Autocuidado para viver e cuidar. As categorias teórico-analíticas foram: múltiplos arranjos familiares; divisão racial e sexual do trabalho; feminismo decolonial; o cuidado como um direito social e cuidado em saúde numa perspectiva ampliada. As mulheres são as principais acompanhantes dos usuários em internações prolongadas na pediatria, e abandonam seus planos para viver em prol de seus dependentes. Elas buscam estratégias de sobrevivência e respostas institucionais. A atual Política Nacional de Cuidados no país (Brasil, 2024), junto com outras políticas e articulada à luta por uma sociedade mais justa, pode ser considerada uma forma reconhecimento da dignidade destas cuidadoras.
Palavras-chave:
Direito ao cuidado; Política de saúde; Cuidadoras na pediatria; Divisão racial e sexual do trabalho
Resumen
Esta investigación analizó los efectos del proceso de atención en los cuidadores durante hospitalizaciones prolongadas en una unidad pediátrica de un hospital universitario en Río de Janeiro, Brasil. Se utilizaron entrevistas temáticas de historia oral, apoyadas en el concepto teórico de narrativas de vida. Los resultados se evaluaron mediante un enfoque hermenéutico-dialéctico, sintetizado en las siguientes categorías analíticas: Enfermedades en ninõs y en adolescentes y cambios en la dinámica de vida de los cuidadores y su familia; Impactos de las hospitalizaciones prolongadas en los ingresos familiares; La dimensión relacional del cuidado; Ocio y autocuidado para vivir y cuidar. Las categorías teórico-analíticas fueron: arreglos familiares múltiples; división racial y sexual del trabajo; feminismo decolonial; el cuidado como derecho social; y la atención de la salud desde una perspectiva más amplia. Las mujeres son las principales cuidadoras de pacientes con estancias hospitalarias prolongadas en pediatría, y a menudo abandonan sus propios planes de vida por el bien de sus dependientes. Buscan estrategias de supervivencia y respuestas institucionales. La actual Política Nacional de Cuidados (Brasil, 2024), junto con otras políticas y articulada con la lucha por una sociedad más justa, puede considerarse una forma de reconocimiento de la dignidad de estos cuidadores.
Palabras clave:
Derecho al cuidado; Política de salud; Cuidadores en pediatría; División racial y sexual del trabajo
Introduction
Care is infused by social determinants that influence the possibilities and limits of individuals’ lives and choices. Despite the advances achieved by contemporary Western societies, such as women’s suffrage, the recognition of diverse families (same-sex marriage and civil unions, for example), increased participation of women in the labor market, and leadership positions, among other achievements, in Brazilian social relations are still built and conditioned by the dominant values of the bourgeois nuclear family model. In this model, women are primarily responsible for care in the domestic sphere (feeding, cleaning, child development and education, care for the elderly and sick or disabled)1.
The lack of remuneration for care work in the domestic sphere is essential for maintaining the current mode of production. Family groups with financial means acquire human resources and tools in the market to carry out the care process for their members, while the poorest depend on emergency and targeted public policies2.
Poor, black women, with little access to formal literacy, are the most heavily impacted by the imposition of care work and its strategic invisibility. Many women change their life routines and even give up future prospects because they are forced to dedicate themselves entirely to caregiving and household chores. This is the case for most mothers, companions, and caregivers of children and adolescents in long-term hospitalizations. Since the institutionalization of the Unified Health System (SUS), from a legal standpoint, all citizens have been guaranteed access to a network of services that should consider one’s health condition in its entirety through humanized care, which includes adequate, respectful, and dignified embracement3. However, there are still significant gaps and shortcomings in the effective availability of health services at different levels of care, as well as in the interaction with other public policies, which are essential aspects for comprehensive care4.
A milestone was achieved in the field of public policy with the institutionalization of the National Care Policy5. It represents a normative advance by explicitly stating intersectionality as a guideline, indicating that the right to care requires social and gender co-responsibility, considering the intersectional inequalities that permeate people’s lives. However, its effectiveness depends on the State’s ability to coordinate sectors and policies, produce intersectional data, and address the historical asymmetries that particularly affect Black women, Indigenous people, and impoverished populations in care work, who are subject to inequalities produced simultaneously by gender, race, ethnicity, class, territory of life, among others6,7.
The notion of care cannot be summarized solely in technical procedures (moderate and hard technologies) and static at a single level of attention8. The care process is developed continuously and materialized in the living relationship between subjects-users, family members, and professionals. In addition to the knowledge of the latter and the necessary technologies, it also includes the knowledge, desires, and needs of the users and their social support network. These articulated perspectives can reject the dominance of biomedical knowledge, seeking precisely the opposite: interaction between people, producing “effects of polyphony”9. As Almeida states10: “[...] there are many dimensions of care in the field of health, implying everything from more general principles that would demarcate paradigm shifts in care to the rearrangement of ethical-political conduct of professionals in the production of health care”10 (p.187).
In the processes of illness in children and adolescents, the organization of a treatment plan and care process involves the entire family group, especially the primary caregivers, who are most often female. The diagnosis of complex and rare chronic diseases mobilizes changes in the relationships and trajectories of users and their support network. Considering the principle of comprehensiveness and the rejection of the hospital-centric ideal of care, it is necessary to construct a care plan that includes actions aimed at the user being treated, as well as their legal guardians and caregivers. Both users and their companions need to be supported in this illness process, with initiatives from the health units that attend to the cases as well as through formalized public policies, given that:
The costs of chronic conditions are not limited to the investment in medications, supplies, and technological resources to be used in treatment: they reach values that the family will have to bear, related to medical services, the revision of social roles, or work limitations that the patient may present11 (p.30).
Regarding the role of women as caregivers, Canesqui and Separavich12 claim that:
the choice does not simply depend on individual will or decision, but also on responding to obligations and moral duties to the family, which assign women duties to care for the sick, the health of their members, the elderly, and children, regardless of personal choices12 (p.328).
In this light, the illness of children and adolescents imposes the need for a “personal reconstruction” of caregivers, which includes changes in habits, abandonment of projects or professional positions, and the establishment of new relationships. When the death of these individuals occurs, especially children, it is common for them to feel as if they have no prospects, having to rearrange their life trajectory and find new meaning for their lives12,13. Therefore, analyzing the place of family groups and their care trajectories in prolonged hospitalizations is essential in order to inspire reflections on the organization of public policies anchored in the intersectional perspective, along with their consolidation in the face of the challenges experienced by those who perform the work of caregivers/companions in long-term hospitalizations.
Hence, this article presents the partial results of a study conducted with caregivers of children and adolescents hospitalized due to chronic and rare diseases at the Martagão Gesteira Institute of Childcare and Pediatrics (Instituto de Puericultura e Pediatria Martagão Gesteira - IPPMG). Our discussion focuses how these caregivers, all women, experience hospitalization and organize their daily lives inside and outside the hospital.
Method
This study was conducted at IPPMG, a pediatric hospital of the Federal University of Rio de Janeiro (UFRJ), whose patients are admitted through the state regulation system. Six of the seven wards were included, excluding the short-term hospitalization ward. After approval from the Research Ethics Committees of ENSP/Fiocruz (CAEE: 73882323.2.0000.5240) and IPPMG/UFRJ (CAEE: 73882323.2.3001.5264), 12 caregivers of children and adolescents with complex chronic diseases (various rare syndromes, such as chronic kidney disease, microcephaly, hydrocephalus, and severe chronic encephalopathy), which involve the need for specialized care and technological dependence14, and who had been hospitalized for a month or more, were interviewed. All of them had care recorded in their medical records by the Social Service team. The theoretical saturation strategy15 was used to determine the number of interviewees.
Developed in 2024, over a 6-month period, with an average duration of 35 minutes, the interviews were based on the thematic oral history method16 and life narratives12,17, with the support of a semi-structured script whose questions addressed the profile and experiences of the caregivers in the exercise of care during hospital stays and the repercussions of this on family, work, and social life. Narratives in the field of health allow for a more effective approach between the actors involved in the dialogical process, recognizing their protagonism and listening to their voice17.
The interviews were conducted in the Social Service room, a space chosen by the women, as it is a room known for its comfort, privacy, and confidentiality, in addition to providing an environment different from the wards. All agreed to the recording of their accounts and signed the Informed Consent Form. The participants were identified by flower names; the hospitalized children and adolescents received cartoon and superhero names; and the professionals, relatives, or other people mentioned were assigned letters of the alphabet.
The analysis of the results was based on a hermeneutic-dialectical approach17, which allows the collaborating narrator to be heard and interpreted within their socio-historical context. Initially, successive floating readings of the interview transcripts were conducted, followed by in-depth readings, which allowed for the formulation of units of analysis discussed in light of authors with a comprehensive, socio-political, and intersectional view of care1,2,5,6,8,18-23. The units of analysis, developed below, are: 1) Hospitalization of Children and Adolescents and Changes in the life dynamics of caregivers and family; 2) Impacts of Prolonged Hospitalizations on Family Income; 3) The Relational Dimension of Care; and 4) Leisure and Self-Care for Living and Caring.
Results and discussion
Characterization of the interviews: elements of the racialization of care
As shown in Chart 1, all interviewees are women, mothers of hospitalized children and adolescents. Two identify as black, five as brown, and five as white; they are of varying ages. Only one reported complete higher education, while the majority have only complete high school.
Among the 12 interviewees, black and brown women did not hold significant positions in the labor market, when active, nor did they report having higher education. This result is consistent with the concept of the sexual, social, and racial division of labor, typical of the Brazilian reality, a result of its history of slavery. This debate, within the horizon of intersectionality, shows that care work is racialized and directed towards the most impoverished women, configuring itself as a perspective imposed since birth. In the case of black women, the intersection between gender, race, and class is maintained in the execution of domestic and care work, which denotes a condition established and demarcated by coloniality-a logic of power that reproduces exploitation and violence even after the formal end of the colonial period1.
All but three of the interviewees are single mothers (female single-parent family). In many cases, the father has no emotional bond with the hospitalized child, nor does he offer financial assistance. Domingos Jr. and Fontes24 highlight that these family configurations, although not homogeneous, make up socioeconomic indicators of the most vulnerable, whose families usually have a woman as the main head of household, who is generally black, with a low or no income, a low educational level, among other vulnerabilities.
It was observed that the units of analysis of the narratives intertwine, as all the themes involve situations that demarcate the subjects’ experience in that care trajectory, during different periods, as well as the changes in routine caused by the illness of children and adolescents. This perspective is consistent with the hermeneutic-dialectical approach that considers the historical context and the social relations in which the subjects are inserted.
Hospitalization of Children and Adolescents and Changes in the Life Dynamics of Caregivers and Families
Before being admitted to IPPMG/UFRJ, the mothers went through several hospitals in the public health system, without success in obtaining a diagnosis or an adequate care plan. This experience brought them more anguish, insecurity, and stress. Families with more favorable financial situations turned to the private market to assist in the diagnosis and care of their children. However, when they were unsuccessful, they found the necessary answer at IPPMG. Those who had no income relied only on the social protection offered by targeted and emergency programs, such as the Family Grant (Programa Bolsa Família - PBF), the Continuous Benefit Payment provided by the Social Assistance Policy (Benefício de Prestação Continuada disponibilizados pela Política de Assistência Social - BPC), and sporadic assistance from NGOs, which does not meet their concrete survival needs, as commented by Silva25.
Regarding the search for the private system, it is important to make a brief comment on the power of advertising and seduction of this sector, despite its ineffectiveness in offering comprehensive care and assistance to complex cases with high technological dependence26,27. Despite important limitations pointed out by the interviewees, the universality of the SUS materialized in their case, indicating its strength and the importance of public investments.
The change in family routine, caused by the illness of children and adolescents, occurred mainly in relation to mothers. They are almost always the only caregivers and, when they take turns, it is with another woman from the family or social network. When they refer to fathers as caregivers for their children, most of the time they consider that they are “helping”, and not fulfilling a paternal responsibility.
Observing that caregiving sacrifices and overburdens caregivers, we turn to Andrade18 who states: “the activity of caregiving is relational, as it requires responsibility, commitment, sacrifice, and involves time and effort to meet people’s needs, such as physical and psychological aspects”18 (p.174). Thus, the performance of domestic tasks and childcare, regardless of the space in which they occur, is naturalized, attributed to women as an obligation inherent to the female gender18 (p.174).
Consistent with the literature, the narratives show that mothers organize their routines according to the lives of their children and, in cases where these children are in prolonged hospitalizations, the daily lives of those responsible become even more restricted and compromised by the caregiving process, which must be reconciled with household chores. As a result, the experience of caregivers is overburdened, consisting of an eternal quest to reconcile the multiple roles they need to perform28-31. In this context, some women feel their lives are interrupted and end up giving up their personal interests to focus exclusively on childcare, confining themselves, along with them, to the hospital. Consequently, fatigue and physical and mental exhaustion are quite common32. Here, we identify another mark of coloniality, since, in addition to gender, we observe the racial marker-the majority of single mothers, without employment ties, and solely responsible for the care of the home and children, are precisely black or brown women.
In cases where parents live together as a couple, the man is the main provider, the one who has the opportunity to enter the job market, so that the act of caregiving in the hospital only occurs sporadically and collaboratively, such as during visiting hours. However, when these fathers make some effort in caring for their children and in household chores, they are labeled as those who “don’t know how to do” housework, with the mothers taking on these tasks and the fathers only acting as “supporters”. This situation demonstrates the social naturalization of women as responsible for care work31. At the same time, only the husband’s paid work is recognized as work, which is another mark of the normalization of caregiving as an obligation of women, without any kind of reciprocation or restitution.
The changes in the lives of families included their homes. Possible hospital discharge involves the need to adapt the home to the needs of children and adolescents after hospitalization, or to move to a different property. This is because some homes lacked formalized electrical wiring, which could pose a life-threatening risk to the technology-dependent child; or they had inadequate features (ramps, small, moldy rooms, etc.); or they were located in high-risk areas, where many teams refuse to provide care for fear of urban violence.
The caregivers appear tired, overwhelmed, and physically and mentally ill, as they have no choice but to “live” the treatment process of their children, living in the hospital and having to obey the rules of this space. They live with different people, adjusting to the roles of caregivers, now with the formalities and norms of the hospital environment. When they need to leave the side of their hospitalized children, even if to resolve some formal issues related to their treatment, many feel guilty for leaving them “alone”. It should be emphasized that having a caregiver is a right, not an obligation, especially since each family group has its own unique characteristics, so that some users do not have the possibility of constant accompaniment. According to Agostini et al. 29: “part of this overload includes the demands that indicate requirements regarding a supposed exclusive dedication of mothers to care, marked by the invisibility of the moral notion of obligation”29 (p.3).”
According to Pasquale Molinier33, care, or concern for others, represents an area of conflict, whether in salaried work (care and assistance professionals) or in domestic work, which has historically been distributed quite unequally, with a female overload. In the contemporary debate, the author proposes a new perspective on work, care, and society, which requires new theoretical and political stances. She argues that it is essential to include care work on the political agenda, especially in the field of care economics, with a budget allocated to enable the agendas of caregivers, since they are impacted in various spheres of their lives and remain unassisted by public actions that legitimize them and guarantee their well-being throughout this journey.
Based on the dynamics of intersectional decolonial feminism, debates began to emerge about the complexity of social relations and the need to recognize care work as work in itself, which demands time and produces physical and psychological strain for those who perform it. Therefore, the care process should be understood as a shared responsibility among the State, the family, and civil society, relying on public policies that support caregivers throughout this journey2.
Impact of Prolonged Hospital Stays on Family Income
Some women have had to leave formal jobs or undergo evaluations by their superiors to balance their formal work hours with caring for their children in the hospital. As a result, many have opted to work independently, without formal employment contracts, while others remain unemployed. Consequently, all lose rights, especially social security rights. Referring to another situation in the lives of caregivers-the birth of their children-Ribeiro2 states that the right to maternity and paternity leave with equal periods for mothers and fathers is one of the plausible demands for the formulation of public policies aimed at caregivers. However, Ana A. Camarano34 considers:
Undoubtedly, maternity, paternity, and parental leave, as well as leave to care for family members with health problems and differentiated work schedules for the primary family caregiver, are important, but they do not eliminate the need for services, such as daycare, formal home care, daycare centers, long-term care facilities for the elderly […]34 (p.531).
In this debate, it is also important to note, as Federici27 states, that even if women have formal positions in the labor market, domestic chores (double shift) still continues to be their responsibility. There is an incentive for them to perform home-based work, because, by organizing their activities in their homes, they end up “legitimizing” the invisibility of the double shift; they spend time and energy, which “undermines the effort of workers to unionize and ends up lowering wages to the minimum wage”27 (p.227).
Many families have only the BPC, related to the health condition of the sick, child as a source of income, since legally it is not permitted to accumulate this benefit with the PBF. The social service of IPPMG offers guidance on the BPC registration process for family members who have difficulty accessing digital platforms, but it does not offer its own form of care. The hospitalized children have complex chronic diagnoses, some in palliative care, so the probability of death is latent. Therefore, a double tension of intense suffering is observed: the loss of the child and, simultaneously, the loss of the benefit related to his/her illness. This situation demonstrates the need for a deeper re-signification of the existence of these caregivers and triggers the debate that Social Assistance Policies should go beyond monetary distribution to also include programs that motivate and assist the autonomy of beneficiaries, with proposals linked to various other public policies. Acácia’s narrative exemplifies the difficulty experienced by caregivers:
She receives a benefit for herself, Mulan, and we are left without care. We can’t work, because if we do, we lose the child’s benefit. And how are we supposed to take care of our other children? It’s like the Bolsa Família program; whoever receives the benefit later has their Bolsa Família cut off... but the benefit is for children with health problems, and what about our other children? How are we supposed to take care of them? You understand? I think this should have been reviewed, at least for us mothers who live off the child’s benefit [...].
Specifically regarding families with members suffering from complex, life-threatening chronic illnesses, whose family income is comprised exclusively of the BPC, the need for discussion about the continuity of this social protection is clear. It is essential to create legal measures so that the financial assistance benefit is not cut off upon the death of the applicant, or that it is maintained for a more reasonable and satisfactory period for the primary caregivers, allowing them time to recover from grief and reorganize their professional and financial lives-areas of life profoundly affected by the need for care work. It is argued that such a measure should be included in the National Care Policy5 in order to recognize caregivers (generally women with low levels of education, without a history of insertion into the formal labor market, and single mothers) in the process of their dependents’ illness. Most of the interviewees do not understand what a public policy is and what it is for. Few have considered the need for public policies to support mothers who had to leave their jobs and change their routines to dedicate themselves to childcare. The majority of patients refer to caregiving as something they naturally do for their children, especially those who are hospitalized. Their statements reveal a belief that they, and only they, have the obligation to care for their children. Given these findings, it is important to note that there are no patient groups, family associations, or other organizations within the hospital dedicated to reflecting on and claiming rights.
The relational dimension of care
Some interviewees address the care provided by the hospital staff to caregivers, highlighting some conflicting relationships. Listening to them, we conclude that professionals need a unique perspective regarding the users and their family groups who are cared for in-hospital units. This perception must consider that the lives of these individuals are not limited to the experiences of the moment of hospitalization. In addition to the time dedicated to caring for hospitalized children, there is employment, income, other family members, inadequate housing, and other concerns that demand action and care.
Caregivers often violate certain hospital rules, such as the prohibition of meetings among themselves for beauty treatments within the wards, or time limits for visits. This generates conflicts that are accentuated when, by learning many technical care procedures, they negatively evaluate the work of nurses, as we observe in the excerpt below:
It’s about diligence. Doing things at the right time. And doing them right, right? Not always doing them unwillingly, like many professionals here do. For example, it’s… it’s time for him to administer salbutamol, and they’re going to do it and don’t aspirate him beforehand… what good will that do? To me, that’s not being careful (Tulipa).
Duarte and Moreira35 claim that a dialogical and communicational perspective should be adopted among the actors involved in the care process. In this logic, professionals should not only inform caregivers of technical terms, but they should also build, along with them, networks of relationships based on dialogue and qualified listening.
For Merhy8, it is necessary to carry out a critical dialectical analysis of the social and economic context, together with the dynamics of work and the micropolitics of work in hospital units, especially to reflect on cases of conflicts and disputes between professionals, users, and their families. The precariousness of working conditions and the excess of demands can contribute to the establishment of uncaring attitudes among professionals. These professionals may also be expressing defenses (not always conscious) against the inevitable wear and tear and suffering of working in the field of health, a suffering that, when not processed in collective reflection processes among workers, often leads to illness or behaviors of indifference, contempt, distancing, and even violence towards users and family members36.
Similarly, when analyzing the tensions between caregivers and the professionals with whom they interact most directly and frequently (generally from the nursing staff), we need to consider that the latter are not (only) representatives of the hospital, but (also) people who belong to the working class, embedded in the complexities and transformations of contemporary social relations. Therefore, they could be allies in the struggle for policies and actions that go beyond hospital care and require intersectoral responses, such as sanitation, electricity supply, income supplementation, among others.
Biroli19 associates the naturalization of the onerous care work performed by women with the observation that, in general, they have shown little engagement and insufficient critical reflection on access to resources through effective political participation. Women who are part of more financially privileged family groups can resort to care services and the apparatus provided by the market, which allows them to pursue plans based on their personal desires and perspectives. However, for those who are impoverished and depend on public policies, often fragmented and emergency-based, as well as on multiple work shifts to ensure their survival and that of their dependents, the only option is to fight for spaces of interaction, to have their voices heard, and for their demands to be incorporated into more consistent policies. Nevertheless, the majority of the interviewees belong to the group of impoverished women, the main or sole caregivers of their children and homes, which hinders political participation in the fight for rights.
It was also observed that attempts at social participation are thwarted, as the interviews showed that their knowledge and needs are often not considered, since the hospital environment remains strongly hierarchical and rather impermeable to the political participation of lay actors in decision-making processes regarding the organization of care. However, we believe that caregivers can organize themselves, constituting themselves as more active ‘social actors’, taking advantage of already established spaces, such as ombudsman offices, disobeying some rules and creating new forms of interaction by recognizing communicative niches in the hospital or in the public health sphere20. Although they do not refer to political actions, there are examples that show some possibilities of association between caregivers and a creative use of hospital space. They report that they make friends with other caregivers, with whom they go out to “have a snack in the hospital cafeteria” or in the surrounding area and come together to talk about their children and life, to rest, and to exchange caregiving, such as “doing their nails or hair”, even if they need to hide in the bathroom to do so.
Without diminishing the importance of social participation, we reiterate that hospital management must consider that care takes place in a relational space, permeated by technologies, but also by subjective positions, demands, knowledge, potentialities, and limitations of all subjects involved-professionals, users, and family members who participate in a network of conversations that supports care20-23.
In social institutions, such as health units, there is a history of hierarchical asymmetries, which can only be addressed through critical action that understands health beyond biomedical diagnosis37. However, without denying such asymmetries, Gastão W. S. Campos23 emphasizes that, even when involved in rigid power systems, subjects always retain their references and resources, not only technical, but also cultural and subjective, and can thus resist (albeit limitedly) the alienation and often violent processes. Below, we present some strategies that families have developed to maintain some degree of self-care and sociability, even while immersed in the hospital setting and the responsibility of caring for their children.
Leisure and Self-Care for Living and Taking Care
The reduction in family income and lack of time impact the performance of leisure and self-care activities for some interviewees who, overwhelmed by the process of illness and caring for their dependents, are unable to dedicate themselves to these dimensions of life. Most caregivers state that they practice self-care not with the intention of improving their own well-being, but to remain well and healthy in order to care for their children. According to them, caring consists of maintaining an attentive and affectionate presence with the one who needs them the most, as Amarílis illustrates:
[...] people think that caring is about giving baths, food. But for me it’s about showing affection, showing affection is about paying attention to details, you’re there for what the child or any other person needs, a matter of support, of showing: “Look, I’m really here” [...].
Certain of the centrality of their responsibilities, even when called upon to talk about self-care, they prioritize comments about the care given to the hospitalized child or the family. Some stated that they understood that, to cope with life in the hospital, they needed to take care of themselves by resting at home and spending time with their other children and husband, or by continuing to take vitamins. However, they emphasized that they were unable to take care of other aspects of their health, such as diet, physical activity, or beauty. Furthermore, they argued that the possibility of leisure and self-care is linked to the financial situation of the families, which deteriorates with everything involved in the illness of their children.
All stated that the hospital offers few, or no, activities aimed at the self-care of caregivers. They cited the recent implementation of music therapy for caregivers as a good initiative, but they emphasized that it only happened after they complained extensively about the lack of activities in the hospital. They clarified that, most of the time, events are only held on commemorative dates, such as Mother’s Day. On these occasions, the hospital offers beauty and massage services. It is the caregivers’ own initiatives that seem to have a more frequent impact on self-care and relaxation, as Bromélia comments:
I go outside, smoke my cigarette, call my son, then go back upstairs [laughs]. Then at the beach, we buy a Guarana soda. Everyone gets together to buy snacks, then we have a beer, but that’s rare. Then we go home, someone comes to stay over [...]. I hang out more with the people from here. When you’re in a hospital bed, you really see that you don’t have any friends, you know? And here everyone’s in the same boat, you know? Here it’s God for us and for each other, because… and our family out there, right? They’re the only ones who stay by our side.
It is important to note that, as other studies show34, although they do not recognize a sense of belonging to the hospital and feel deeply affected by the routine of hospitalization, the women reported that they made friends with other caregivers, mothers who care for their children during hospitalizations and in other areas of the health field. As a result, they end up developing strong bonds and sharing their leisure time in the hospital’s surroundings, which: “[…] contributes to the establishment of support and affection, capable of supporting them in the hospitalization experience”11 (p.168). It was therefore observed that a support network is built among the caregivers who are experiencing the same trajectory.
Final considerations
The hermeneutic method allowed us to understand the suffering inherent in the health condition of the caregivers’ children in a way that is situated within the concrete and sociocultural conditions of their lives. It became evident that, due to structural inequalities-being women, poor, and mostly black-they need to be supported by public policies. Thus, a broad view of care and a qualified listening to the needs and demands of caregivers requires the recognition of their rights, along with specific, humanizing, and intersectoral policies, considering the intersectionality of their condition.
The understanding of the (inter)subjective and structural dimensions of caregivers’ suffering was possible through the construction of narratives. These were the result of a process in which the women, when questioned and listened to with interest and sensitivity, constructed a chain of meaning for their lived experience, attributing to it a space-time that inserted them into history, which allowed them not only to share but also to identify sociocultural and material aspects that involve the possibilities, limits, and determinations of living and caring.
In a country like Brazil, with high indicators of socio-economic inequalities38,39, with a history of racism and colonialism, and where intersectionality shows how the interaction of factors, such as gender, race, ethnicity, age, disability, social class, among others, impacts the lives of these women caregivers, it is necessary to invest in policies that bring more equity, combat discrimination, and provide answers to demands that should be recognized as legitimate social rights.
The current National Care Policy (Brazil, 2024) can be considered, along with other policies and interlinked with the struggle for a more just society, a way to seek recognition of the dignity of these caregivers and all those who suffer from these conditions.
References
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» https://tradingeconomics.com/brazil/gini-index-wb-data
The data sources adopted in the research are indicated in the article’s body.
