Introduction

How do care mobilities and other contextual factors influence the dynamics of hospital-based informal caregiving (HIC)? Globally, extensive research has been conducted on the roles and practices of informal caregivers (ICs) within both formal healthcare systems and general care provision settings [1–4]. In Africa, and various low-and-middle income settings, ICs play crucial roles in supporting relatives and friends experiencing ill-health. Their lived experiences encompass a range of tasks and responsibilities, extensively documented in scholarly literature [5,6]. The burdens and challenges faced by ICs can be particularly pronounced when providing care to hospitalized individuals [7,8].

However, extant studies have done little to explore the contextual factors influencing informal caregiving in hospital settings. This article aims to address this gap by investigating the role of care mobilities and other contextual factors that drive the involvement of relatives in hospital-based informal caregiving (HIC). Specifically, this study examines how relatives of inpatients engage in HIC, providing informal care while remaining in or around a healthcare facility. For the purpose of this study, migrating informal caregivers are a sub-population of ICs who travel far away from their place of residence to support the care of inpatients while stationed in/around health facilities.

Informal caregiving is an essential component of the global healthcare system [9]. The World Health Organisation (WHO) describes an IC as “any person without formal health training who is not employed by the hospital facility and is onsite in the capacity as ‘carer’ or ‘guardian’ of a person known to them who is admitted to the facility as a patient” [10]. Informal caregivers (ICs) play a vital role in supporting patients, particularly in Africa, where the majority are women [11], they are integral to Universal Health Coverage efforts, providing invaluable labor to health systems [12].

In numerous African settings, ICs persist in their supportive roles, influenced by a multitude of complex and interconnected factors [13]. These factors include both intrinsic (dispositional) and extrinsic (external) elements. Intrinsic factors stem from the caregivers’ internal motivations, driven further by personal ability, values and beliefs [1]. Extrinsic factors arise from external influences such as familial obligations, cultural influences, severity of ailment of the care recipient, poverty and health systems dysfunctions. For example, cultural precepts prescribe a feeling of obligation to act as an IC as entrenched in the principles of reciprocity, responsibility and selfless affection [2,14].

ICs face significant challenges and burdens, with studies consistently reporting high levels of caregiver burden, vulnerability to depression, and adverse impacts on physical, emotional, and general health [14–16]. These challenges are exacerbated by factors such as recurrent hospitalization, treatment uncertainties, prolonged caregiving, and reduced patient capabilities [17]. Additionally, the economic burden is considerable, particularly for young caregivers who are in their most economically active years [17].

Providing informal care to inpatients presents additional challenges. The hospital environment’s strict rules may conflict with the consistent presence and involvement of relatives [18,19]. ICs provide diverse assistance, including personal and medical care, often performing specialized tasks such as handling samples and assisting with mobility [20,21]. These responsibilities can adversely affect ICs’ social, financial, and health aspects [22]. Furthermore, inadequate funding, infrastructure deficits, staff shortages, and a lack of patient-centered care exacerbate the challenges within the hospitalization structure [23, 24].

In Low- and middle-income countries like Nigeria, where familial networks often serve as the primary source of support for individuals facing health challenges, informal caregivers (ICs) play a vital role in complementing formal healthcare services. However, the role of ICs within hospital settings remains underexplored, particularly regarding the influence of care mobilities, the movement of patients, caregivers, and resources within and across healthcare systems on HIC practices.

Nigeria, the most populous nation in Africa, is divided into six geo-political zones: South East, South West, South South, North East, North Central, and North West, and operates as a political federation with 36 states comprising multiple ethnic groups. Although Nigeria’s health system has developed over time, it remains fragile, inequitable, and inefficient. It consists of a complex mixed system where private hospitals operate in a free market, and public hospitals are under government control. The private sector delivers approximately 60% of healthcare services, whereas the public sector accounts for 40%. However, the public health sector is nearing collapse due to inefficiencies, poor infrastructure, and insufficient resources [25].

Responsibility for healthcare is divided among local, state, and federal governments, which oversee primary, secondary, and tertiary care, respectively. However, there is a lack of coordination among these levels due to overlapping responsibilities. The primary healthcare (PHC) system, meant to be the backbone of Nigeria’s health system, has struggled to provide essential services due to inadequate funding, deteriorating infrastructure, poor governance, subpar service delivery, and low performance among health workers [25,26]. Patients often have to pay out-of-pocket for medications and provide their own meals during hospital stays due to inadequate funding and resource allocation within the healthcare system [25]. This financial burden is compounded by a severe shortage of healthcare workers, which results in high patient-to-doctor ratios and limited access to specialized care, particularly in rural areas [27]. Rural-urban disparities further exacerbate these challenges, with urban centers typically having better-equipped facilities and more healthcare professionals compared to rural regions. These systemic issues necessitate the reliance on informal caregivers (ICs) who travel significant distances to support their hospitalized relatives, often becoming “resident caregivers” within hospital premises. This reliance is influenced by cultural expectations and the inadequacies of the formal healthcare system, making the role of ICs crucial yet underexplored in the context of hospital-based informal caregiving (HIC). Understanding the healthcare system’s dynamics is essential to comprehensively studying how care mobilities and other contextual factors shape the practices and challenges of HIC in Nigeria.

Despite the prevalence of informal caregiving, explanations for the occurrence and persistence of hospital-based informal caregiving are often limited, particularly regarding the critical significance of informal care-related mobilities. Care mobilities play a crucial role in providing a comprehensive understanding of informal caregiving in hospitalization situations. These mobilities entail leaving one’s home and traveling to support family members who need to access healthcare [28,29].

On one hand, individuals residing close to healthcare facilities are less likely to require hospitalization compared to those living farther away [30]. Conversely, referred patients often seek tertiary healthcare outside their state or province of residence [31]. Consequently, informal caregivers (ICs) engage in trans-localism by undertaking intra- and inter-district/state level travels to assist sick relatives in the hospital [28,32]. Due to the costs of daily commuting and their economic circumstances, ICs often travel long distances and become “resident caregivers” by residing within hospital premises [28]. Understanding the role of care mobilities in the practice of hospital-based informal caregiving (HIC) is therefore essential for comprehensively studying informal caregiving dynamics. Although hospital-based informal caregiving is widespread, the underlying ‘care mobilities’ from trans-local journeys to extended on-site stays remain largely unexplored, revealing critical social, economic, and emotional forces that shape both the practice and sustainability of this form of care.

In this paper, our objective is to develop a comprehensive understanding of hospital-based informal caregiving (HIC) in low- and middle-income countries, drawing from data collected at a Nigerian tertiary health facility. We aim to explore the significance of care mobilities in shaping HIC practices. Specifically, we seek to demonstrate how care mobilities, alongside other dynamics within the hospital and healthcare systems, contribute to the conditions conducive to HIC. The subsequent sections of this paper outline the methodology employed in our study, present the findings, and engage in a discussion and analysis of these findings. Finally, we conclude with insights gleaned from our research.

Materials and methods

Participant selection

Four categories of participants were included in the study: informal caregivers, inpatients, hospital staff, and ad-hoc/paid caregivers. Informal and ad-hoc/paid caregivers and inpatients were selected across wards with well-established inpatient services. Hospital staff were drawn based on their relevance for the research, including health workers, management staff, security guards and health assistants (see Table 1).

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Table 1. Study population by distribution of interviewees and average interview duration.

https://doi.org/10.1371/journal.pone.0327198.t001

The participants were selected using a combination of purposive, snowball, quota, and convenience sampling methods. We used purposive sampling to identify the relevant units in the hospital. The identification of more than half of the informal caregivers was purposively conducted, while the rest were relatives who were available and are willing to participate in the study. We initially approached caregivers within and around hospital wards to inquire about their presence and subsequently introduced and invited them to voluntarily participate in the study. In the case of the 15 inpatients, we obtained necessary ethical and hospital approvals as well as patient consent before approaching and recruiting them using a purposive technique. Consent was obtained through both oral and written methods, and it was recorded; while there were no formal witnesses. Nurses identified inpatients that were fit to participate and were present during the consent process. Quota sampling was utilized to ensure diversity within the study population: most informal caregivers were women but we ensured that male caregivers were included, and maintained an age balance to capture young, middle aged and elderly caregivers. The snowball technique helped us achieve paired sampling of participants, with 9 informal caregivers providing connection with their in-patients. The technique also proved beneficial in identifying relevant staff spread across units and departments within the hospital. Additionally, convenience sampling was employed to select participants based on inclusion criteria, availability, and willingness to participate. Using a combination of sampling methods ensured the complementarity of strengths to cover for the blind-spots of a singular method. For example, snowballing’s strength in caregiver-inpatient identification helped us understand the nuances experiences of informal caregivers as shaped by the prognosis and conditions of their in-patients. This further buttressed the quota and purposive sampling methods, ensuring that diversity of conditions were covered. All interviews were conducted face-to-face.

To be eligible for inclusion in the study, hospital staff were required to be formally employed at the health facility, while ad-hoc caregivers were qualified based on their affiliation and role as paid carers. They were conveniently sampled based on scheduled appointments and availability in the hospital premises. Inpatients were included if they were currently admitted and receiving care in any of the inpatient wards, had an on-site informal caregiver who had traveled from outside the city to provide support, were able to communicate effectively, and were subjectively deemed healthy enough to participate based on assessment and permission from the nurse on duty.

Furthermore, informal caregivers were eligible if their usual residence was located outside the city where the hospital is situated, they were attending to an inpatient who had been admitted for three days or more, resided or had resided in or around the healthcare facility during data collection, were of any gender, and aged 13 and above. In total, 75 participants were interviewed. (see Table 1).

Results

This section presents evidence showing the role of care mobilities and other contextual factors in hospital-based informal caregiving (HIC) in Nigeria (see Fig 1). Care mobilities, encompassing various forms of movements and routines, play a pivotal role in shaping the presence and activities of informal caregivers (ICs) within tertiary health facilities. This section presents the findings of our study, organized into two overarching themes: care mobilities and associated contexts of hospital-based informal caregiving (HIC). The first theme, care mobilities, explores the physical and logistical movements undertaken by informal caregivers (ICs) before hospitalization including long-distance travel and during hospitalization involving routine micro-mobilities within the hospital environment. The second theme, associated contexts, delves into the multifaceted drivers of HIC, categorized into individual, institutional, and cross-cutting dimensions.

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Fig 1. Hospital-based informal caregiving framework.

https://doi.org/10.1371/journal.pone.0327198.g001

At the individual level, we examine how emotional connections, the clinical status of patients, and financial constraints shape caregivers’ involvement. The institutional context highlights policy contradictions and the co-optive task-shifting practices that normalize ICs’ roles despite formal exclusion. Finally, the cross-cutting context reveals how cultural norms and therapeutic holism intersect to reinforce the expectation of informal caregiving. The presentation of these themes is followed by a profound discourse on how they shape specifically, how mobilities influence caregivers’ activities, and more generally, HIC in (south-west) Nigeria.

Discussion

This article investigates the impact of care mobilities, as well as other contextual factors, on why and how relatives of inpatients engage in hospital-based informal caregiving. It introduces an innovative framework of caregiving mobilities to understand HIC by shedding light on the shared experience of care-seeking journeys undertaken by patients seeking specialized treatment in Nigerian tertiary health facilities. Care mobilities and the notion of distance embedded within it goes beyond accessibility to healthcare facilities [38] and the choice of patients and their ICs [39]. It also highlights the rural-urban divide that have become prominent in health accessibility conversations in low- and middle-income countries [40,41].

Currently, migration health and public and population health research rarely adopt the mobilities lens nor do they pay attention to ICs who often accompany the sick on their journey to find solution to ill-health. This study filles in the gap by introducing an innovative framework that bridges mobilities studies with health systems research, offering a novel lens to examine care-seeking dynamics in low-resource settings. By highlighting the “mobile condition of care-seeking”, this framework reveals how the physical, social, and economic journeys of patients and their informal caregivers (ICs) shape health outcomes and system functionality. Its novelty lies in challenging fixed ideas of healthcare access by showing how care moves across households, communities, and institutions within health systems. This approach uncovers critical, yet understudied, actors like ICs, whose labour and sacrifices sustain care processes but remain marginalized in policy.

At the centre of this framework is the redefinition of “distance” as a collective burden. While geographic barriers to healthcare in low- and middle-income countries (LMICs) are well-documented [42], what is rarely represented is how distance is vicariously experienced by ICs through financial strain, emotional stress, and physical exhaustion. The article shows how distance is equally a problem for family members who experience the negative consequences of distance while remaining marginal to the health system structure. This implies that there is the need to integrate the experiences of ICs into health policies and interventions, as their emotional, social, and economic burdens are deeply tied to the accessibility and quality of care for the patients they support. This calls for a more comprehensive approach that addresses the broader implications of care mobilities in health systems research.

Further, findings also draw attention to the structure of informality that shapes care provision in an under-resourced setting. Here, the formal care practice of the hospital and the everyday standard operating procedure that healthcare staff work by depended a lot on the presence of ICs [11]. The presence and activities of ICs immensely shapes this informality which creates a distinct social world in the hospital setting considerably characterized by complex relationships between staff and ICs [43]. The presence of ICs was assumed and expected when a patient is brought in and admitted to the wards. Strikingly, however, the entrenched practice of the NSSOP did not translate to a qualitative inclusion of ICs in the health facility. Rather, ICs remained excluded as the norm of “patient-exclusivity” characterizes institutional disposition [13]. Patience-exclusivity made the policy that prohibited the presence of ICs reasonable and valid. It is also within the logic of this institutional disposition that the hospital seemingly invisibilize ICs, despite their visible presence in the healthcare facility always. Here, another tension is revealed between the norm of patient exclusivity and narrative of therapeutic holism which paradoxically also functions to facilitate the co-optive incorporation of ICs in an Africa tertiary health facility. These dynamics reveal the need for a more inclusive approach to healthcare that acknowledges and integrates the vital role of ICs in the provision of care.

Relatedly, the practice of NSSOP is suggestive of the problems arising from co-optive task shifting as part of an oppressive health systems transition that is underway in Africa [1]. While recognising the ongoing crisis of staff shortage and the usefulness of engaging ICs to fill the vacuum in some ways, the existing operation of task-shifting is worth reassessing. When a management staff says, they give “responsibilities” and “delegate” to ICs, they are redefining the domain of duties within a system in which the bureaucracy inherent in everyday operation of the hospital creates diverse opportunities for routine tasks. The tasks so created are such that those formally employed staff are unable to perform them alone and effectively without the contribution of ICs. Interestingly, the World Health Organisation (2008) describes task-shifting as the process of rationally delegating tasks to “less specialised health workers” with shorter training and fewer qualifications to improve access to healthcare services. However, the role being performed by ICs in Nigeria tertiary health facility is an example of this delegation, although most of them lack formal care training in the sense intended by the WHO. The ICs involved in HIC often assumed their roles suddenly and unprepared.

Moreover, by paying attention to how nurses interact and engage the labors of caregivers of inpatients, we can begin to understand the utility/use mode of incorporation of family caregivers in African public health facilities. Although many relatives of inpatients may assist loved ones on accounts of what Sahlins [44] called “generalized reciprocity”, the utilization of the labor in the health facility was normalized, and ICs have limited power to determine how their labor is utilized. While not expecting anything from their sick loved ones, the formal caregivers often activate and de-activate the labor of ICs at will. Formal health workers may dismiss and mobilize the labors of family caregivers, and determine whether they are wanted or not wanted as desired. In short, ICs have little or no power to challenge formally employed staff, and have become a path of least resistance exploited to sustain a dysfunctional health system. This evidence further contributes to our understanding of the undercurrents of unequal power between ICs and health workers in African public health systems [45,46].

Meanwhile, the constraining of ICs to hang around as supported by the notion of “absence equals abandonment” ignores the changing pattern of social relations in many African societies today, where increasingly people are moving towards individualism and small families – away from communalism and extended family structure [47, 48]. This norm also ignores the damaging economics of presence on poor people who mostly attend such public hospitals; people who mostly work in the informal economy as day-to-day earners [49–51]. When stuck in the hospital, they risk losing livelihoods and income. They are also unlikely to be able to afford the catastrophic expenses associated with supporting the hospitalization care of sick relatives [52–54]. This highlights the need for a more flexible and economically sensitive approach to caregiving in public hospitals, one that recognizes the social and financial constraints ICs face and offers alternatives that do not jeopardize their livelihoods. An example of this could be the introduction of caregiver stipends or compensation which has been documented in Canada and the United Kingdom [55].

This explanatory framework underscores the importance of relational sociological theories in healthcare, particularly concerning informal caregiving, including social capital, network and health inequalities theories [56–59]. For example, the framework aligns with Coleman’s social capital theory by highlighting the significance of relationships between and among actors, rather than focusing solely on individual attributes. It suggests that support from relatives is influenced by social capital within families and communities, especially strong intergenerational ties and trust, which can facilitate support during hospitalization, despite potential challenges. We can advance similar perspective in relation to network theory [60]. The notion of care mobilities also shows how health services access and distance-related issues worsens health inequalities, particularly for ICs and inpatients from lower socioeconomic backgrounds. Due to the necessities of care mobilities, they may have less flexibility in taking time off from work, arranging transportation, or accessing information about the patient’s condition. Our framework, therefore, reiterates that policies that address the root causes of health inequalities, such as income inequality and social exclusion, can empower relatives to provide optimal support to their loved ones during hospitalization.

This study’s findings demand concrete policy interventions addressing the exploitative power dynamics between healthcare workers (HCWs) and Informal Caregivers (ICs), who endure the collective burden of distance through financial strain, emotional stress, and physical exhaustion while remaining marginal within the system. To improve support for informal caregivers (ICs) and address healthcare inequities, three targeted policy actions are recommended. First, the government should prioritize investments in healthcare infrastructure and expand mobile and community-based primary health services in rural and underserved urban areas. For example, deploying mobile clinics or community health workers can reduce travel burdens and increase service uptake. Second, healthcare institutions must adopt patient- and caregiver centered models of care by formally recognizing the caregiving role of ICs in treatment planning. This includes integrating culturally relevant practices and training healthcare professionals in culturally competent communication and care delivery. Third, financial protection mechanisms should be introduced to reduce out-of-pocket expenses for ICs. These could include means-tested subsidies, community-based health insurance, and voucher systems to cover hospitalization, medications, and transport.

These policy actions must be grounded in partnerships among federal and state governments, health agencies, NGOs, and local communities to ensure they are contextually appropriate and sustainable.

Conclusion

The role of informal caregivers remains pivotal within the healthcare landscape of low-resource settings. This is particularly important in the context of hospitalization care, where patients often travel long distances to access specialized treatment in urban tertiary health facilities. Understanding the factors that shape the involvement of these caregivers is crucial for optimizing patient care outcomes. This study offers empirically-informed insights and a framework that go beyond the traditional understanding of the culture of care in African societies.

Our findings present different opportunities for further research. First, there is a need for more in-depth qualitative and quantitative studies to explore the lived experiences of ICs across different cultural and geographical contexts within Africa. Such research could provide a more nuanced understanding of the socio-economic and emotional burdens faced by ICs and how these vary across different settings. Additionally, future studies could investigate the feasibility of interventions such as caregiver stipends, community-based care programs, and training for healthcare professionals on culturally competent care in Africa.

Second, the concept of care mobilities warrants further exploration, particularly in relation to its impact on health outcomes and the sustainability of health systems. Research could examine how care mobilities intersect with other determinants of health, such as gender, socio-economic status, and urban-rural disparities, to shape access to and quality of care. Comparative studies across different countries could also shed light on how care mobilities operate in diverse health systems and what lessons can be learned from successful models in other regions.

Third, the role of technology in mitigating the challenges of care mobilities and supporting ICs should be explored. For instance, telemedicine and mobile health applications could potentially reduce the need for physical travel to healthcare facilities and provide remote support for ICs. Research could assess the feasibility, acceptability, and impact of such technologies in low-resource settings.

Finally, there is a need for policy-oriented research that evaluates the implementation and impact of healthcare reforms aimed at integrating ICs into the formal health system. This could include studies on the development of national caregiver support policies, the establishment of caregiver training programs, and the creation of financial mechanisms to alleviate the economic burden on ICs. Such research would be crucial in informing evidence-based policies that promote the well-being of both patients and their caregivers.

Moving forward, it is imperative for future research to broaden the scope of investigation into hospital-based informal caregiving across diverse African contexts. Additionally, comparative studies exploring how the findings from this research may translate to non-African settings could provide valuable insights. Furthermore, there is a need for deeper exploration into the experiences of hospitalized patients who lack familial support within health systems where the role of informal caregivers is deeply ingrained. By exploring these areas, we can advance understanding on the complexities surrounding informal caregiving in resource-limited health systems settings.

Supporting information