Introduction

Severe mental disorders(SMDs), including depressive disorders, schizophrenia and bipolar disorders, are chronic and counted among the top 20 disabling disorders [1,2]. They affect an estimated 4% of the adult population and contribute significantly to the global burden of disease, representing a major source of morbidity and disability worldwide [3,4]. In South Africa, SMDs account for approximately 26.1% of all reported mental health conditions [5]. While the exact prevalence of mental health disorders in Mpumalanga remains unclear, the province is reported to have one of the highest rates of mental health disorders in South Africa [6]. A profile of common causes of mental illnesses in Mpumalanga, a predominantly rural province, indicates that most patients are diagnosed with bipolar disorder, schizophrenia, major depressive disorder, and substance-induced psychosis [7]. Factors such as limited access to mental health services, socioeconomic challenges, and rural healthcare disparities may contribute to the high burden of serious mental disorders, making the province a relevant site for this study [6].

Globally, the growing burden of mental disorders has been overcome by persistent challenges, and one prominent challenge is the treatment gap between the need and provision of mental health services [8]. In high-income countries, about a third of the population with mental disorders receive treatment, but in LMICs, less than 5% of people with mental disorders receive treatment [9,10]. In South Africa, it is estimated that only 27% of individuals with SMDs receive treatment, with the dehumanising state of mental health services in rural areas often attributed to structural and systemic issues such as limited funding, poor policy implementation, and lack of infrastructure, limited institutional support, and staff shortages [11–13]. In a deinstitutionalised mental health system, the inadequate access to mental health services calls for informal caregivers to become key role players in the recovery of persons with mental disorders, particularly for those with SMDs who often require long-term care and management [14,15]. The role of being an informal caregiver is often occupied by family, friends, neighbours, or a good Samaritan, who are not remunerated for providing care, and who provide continuous care to a person with a SMD [16,17].

Informal caregivers are responsible for meeting the daily needs of the person with SMD, including financial support; providing emotional support; dealing with disruptive behaviour; monitoring their mental state; supervising medication; and identifying early warning signs of relapse and deterioration [15,18,19]. Dealing with the caregiving responsibilities has been linked to severe psychological distress and existential concerns among the informal caregivers [20]. Previous studies conducted in high-income countries and low and middle-income countries established that caring for persons with chronic conditions such as SMDs is a formidable task that has been linked with increased financial, emotional and physical burdens [16,21]. Various factors have been identified as contributing to these burdens. These include caregivers’ anticipation of negative health outcomes, grief over the lost potential of the care recipient, emotional distress from witnessing their loved ones’ suffering, as well as feelings of resentment, disappointment, and guilt arising from their perceived inability to alter the course of the illness [21–23]. The experience of burden, along with watching the care recipients go through the pain of dealing with their mental disorders, is likely to awaken existential death anxiety, which is brought about by the caregiver’s own fear of death and dying [21].

According to Yalom [24], humans possess a unique awareness of their own mortality, living with the understanding that death is an unavoidable part of existence. Death anxiety has been described as a multidimensional emotional response that emerges when individuals reflect on the reality of death, whether their own or that of others [25]. From an existential viewpoint, the awareness of life’s finitude profoundly influences how people construct meaning and confront uncertainty. For informal caregivers, ongoing exposure to a loved one’s mental or physical suffering may intensify this awareness, evoking distress related to both the potential loss of the care recipient and their own mortality [26]. This experience, conceptualised as existential death anxiety, represents a form of existential distress rooted in concerns about meaning, continuity, and the limits of human existence [26].

A study by Thakkar [27] reveals that parents of adult children with high and complex needs often face the question of what will happen to their children when they are dead. The concerns relate to whether their adult children would receive adequate care when they are no longer there to care for and advocate for them [27]. Dealing with this question is worrisome [27] as caregivers are confronted with the existential reality of their death and mortality. This has been shown to lead to increased levels of depression, hopelessness, powerlessness, and anxiety, which threaten the physical, emotional, and psychological well-being of caregivers [21,28,29].

Understanding the existential concerns is important for developing strategies for supporting the health and well-being of the informal caregivers of persons with SMDs. These concerns relate to deeper questions of meaning, purpose, and uncertainty about the future, which often underlie the emotional and psychological strain of caregiving. By recognising and addressing these issues, support strategies can help caregivers build resilience, find meaning in their roles, and cope more effectively with the ongoing demands of caring for a person with a severe mental disorder. Currently, limited studies report on the existential concerns, such as death anxiety, affecting informal caregivers in mental health. This study aims to address this gap by reporting on the existential crises experienced by informal caregivers of persons with SMDs in rural South Africa.

Materials and methods

Results

The informal caregiver sample was predominantly female (75%), with nearly half over 65 years (47.1%) and a third between 40 and 65 years (33.3%). Caregiving experience ranged from 5 to 20 years, with half providing care for 1–8 hours daily and 41.7% engaged for 19–24 hours per day (Table 1) [37]. Most caregivers (50%) were pensioners, while 33.3% were unemployed, with a household income of less than ZAR 5,000 ($274) per month. The people with severe mental disorders were mostly male (66.7%), primarily aged 30–39 years (41.7%), and unmarried (75%), with secondary-level education (75%). Most (58.5%) were unemployed and receiving a disability grant, clinically stable (83.3%), and over half were diagnosed with schizophrenia (58.3%) (Table 2) [37].

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Table 1. Demographic characteristics of informal caregivers of persons with SMDs (n = 12).

https://doi.org/10.1371/journal.pmen.0000288.t001

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Table 2. Demographic characteristics of the people with severe mental disorders (n = 12).

https://doi.org/10.1371/journal.pmen.0000288.t002

The following themes were identified: Navigating the challenges and distress of caregiving, and caregivers’ experience of existential anxiety. Each theme comprises sub-themes providing a multifaceted and detailed breakdown of the findings.

Discussion

This study aimed to explore the lived experiences of informal caregivers of persons with SMDs. The findings revealed two main themes, namely navigating the challenges and distress of caregiving and their experience of existential death anxiety while occupying the caregiving role. The theme of navigating the challenges and distress of caregiving had three sub-themes that highlighted the sense of responsibility and accountability the informal caregivers have towards ensuring the health and well-being of the people with SMDs, meeting their physical needs, and enabling their participation in daily occupations. The two sub-themes of caregivers’ experience of existential death anxiety were fear for the future of people with SMDs if the caregiver died, and concerns about the unpredictability of their mental conditions and their ability to earn a living in the future. In these themes and sub-themes, the experiences of informal caregivers were characterised by fear, persistent worry, despair, and feelings of powerlessness, reflecting the tension between the demands of caregiving, their sense of responsibility and ownership over the care of people with SMDs, and their need to protect and ensure the well-being of their care recipients.

Most informal caregivers (41.7%) in this study are in their late adulthood, while many others are in middle adulthood (33.3%). The majority are parents of people with SMDs (66.7%), while a notable proportion are siblings (33.3%). These relationships, together with caregivers’ stage of life, may predispose them to experiencing psychological distress related to their sense of responsibility. The informal caregivers perceived their sense of responsibility and accountability towards meeting the needs of the people with SMDs, which appeared to be driven by their fear, the need to be protective of the well-being of their care recipients, and their powerlessness brought on by their existential death anxiety. Erikson’s [38] human development theory classifies middle adulthood as a stage of generativity versus stagnation that is characterised by the need to give to and assume responsibility for others. For parents, generativity is achieved by successfully nurturing their children’s growth and development to help them become capable and contributing members of society. Successfully achieving generativity is therefore linked with life satisfaction and psychological well-being [39]. Parents of people with SMDs are the primary source of care and support for their children, despite age, and as a result, active parenting does not end even when the care recipients reach adulthood. Subsequently, the prolonged care required by people with SMDs is often accompanied by strain that threatens the caregivers’ psychological well-being [40]. An important finding from this study is that a notable proportion of caregivers were siblings (33.3%). While parents often assume caregiving responsibilities due to cultural expectations and family roles, siblings may take on this responsibility either as co-caregivers or as primary caregivers when parents are aging, unavailable, or deceased. Unlike parental caregivers, siblings are frequently in the midst of their productive life stages, balancing employment, child-rearing, and other familial responsibilities alongside their caregiving responsibilities [41,42]. This could result in a dual burden, which could increase the risk of emotional distress, financial strain, and role conflict. Vukeya et al. [41] reported that siblings of people with SMDs in rural South Africa experienced caregiving as overwhelming and emotionally destabilising, with an intense need for structured support. Similarly, Young and Flannigan [42], highlighted that siblings faced significant financial strain, stigma, and uncertainty about their future when caring for a brother or sister with mental illness. These findings align with the experiences of the caregivers in our study, highlighting the unique challenges they face in balancing caregiving with their own developmental and social responsibilities. This, therefore underscores the importance of providing targeted support and interventions, particularly in low-resource settings such as rural South Africa.

In this study, most care recipients (66.7%) are in early adulthood, and some (33.3%) are in middle adulthood. While many were considered to be relatively stable, i.e., not showing any positive psychiatric symptoms, they still displayed dependency towards their informal caregivers. As a result, the informal caregivers feel a sense of responsibility to ensure the health and well-being of the people with SMDs and to meet their needs. Consequently, fulfilling these responsibilities results in psychological distress due to the sense of responsibility arising from the caregivers’ knowledge of the functional limitations of the people with SMDs leads to fear, worry, and feelings of powerlessness when they face their own mortality. According to Erikson, generativity is characterised by the psychological “need to be needed”, and therefore, the role of caregiving can be related to higher perceptions of generativity [43]. The caregivers in this study expressed a sense of responsibility towards the people with SMDs, and they often identified themselves as the sole person suitable for fulfilling the role of caregiving. While assuming ownership of their caregiving duties can result in satisfaction for caregivers and promote the well-being of the people with SMDs [44], it can also be detrimental to caregivers’ psychological well-being. For some caregivers in this study, fulfilling the role of caregiving is obligatory and means dealing with financial strain and protecting both the care recipient and other members of the family, which eventually leads to self-sacrifice. This self-sacrifice leads informal caregivers to sacrifice the little money they have to meet the financial needs of the people with SMDs to protect them from exploitation by the community. According to Van Nistelrooy [44], the act of self-sacrifice tends to be inherent in the caregiving role because caregivers are faced with a constant need to sacrifice their time, finances, relationships, and at times, their employment to help improve and protect the well-being of their care recipients [45]. The limited autonomy in caregiving can leave caregivers feeling constrained by external circumstances, reducing their sense of agency in managing both the care recipient’s needs and their own well-being [46]. Consequently, occupying the caregiving role predisposes participants to a state of powerlessness, which likely leads to feelings of stagnation. These findings are similar to those of Jönsson [47], who found that caregivers of people with mental disorders experience worry and powerlessness while fulfilling their caregiving responsibilities.

The experience of existential death anxiety expressed by the informal caregivers in this study is expected because most (41.7%) are in late adulthood. Late adulthood is the last stage of life, and individuals in this stage are confronted with the reality of death and their mortality. Erikson identifies late adulthood as a stage of ego integrity versus despair [48]. Despair surfaces when older individuals are confronted with stressful life situations [49]. The demands of caregiving, such as being the sole provider of care for their adult children, dealing with financial strain, dealing with the functional limitations of their care recipients, and the unpredictability of SMDs, trigger a state of despair among caregivers. Consequently, caregivers experience an existential crisis brought on by their concerns that the person with SMD will suffer when the caregivers’ care ceases in the event of their death. Most care recipients (58.3%) in this study developed schizophrenia in early adulthood and are unmarried. Although they are in their productive stages of life, these people with severe mental disorders remain dependent on the care and structure provided by their caregivers to function in their environment. This is because schizophrenia is a chronic mental disorder characterised by psychosis and unpredictable, hostile, or risky behaviour with long-term functional limitations [50,51]. It is therefore understandable that the informal caregivers in this study expressed fear regarding the unpredictability of the conditions of people with SMDs, anticipated future relapses despite stability on treatment, and concerns about their ability to earn a living in the future. Given the chronic nature of schizophrenia, those diagnosed tend to be susceptible to relapses even while on treatment [35]. In fact, the relapse rate of schizophrenia is estimated to range between 50% and 92% globally [52]. It is therefore a serious concern that care for these people with SMDs relies on the elderly, who are themselves a vulnerable population. In addition to coping with a decline in their own health, they must bear the stressful demands of caregiving, which poses a threat to their psychological well-being [37]. Findings from this study suggest that stress among the elderly population may act as a predisposing or precipitating factor for despair [49], which can be attributed to the existential crisis experienced by the caregivers.

Most of the informal caregivers in this study are the sole providers of care for the people with SMDs, and their concerns about the continuity of care in the event of their death highlight issues related to succession planning for caregiving in rural South Africa. A study by Thakkar [27] on succession planning for adult children with disabilities revealed that caregivers often avoid future planning for their care recipients because they find this topic overwhelming. This is largely because they are forced to deal with the inevitability of their own mortality and deal with the anxieties of relinquishing their responsibilities to others, which may mean an end to their caregiving role [27,53]. The caregivers in this study identified themselves as ‘the only person fit to provide quality care’, highlighting a lack of confidence in the other family members’ ability to provide quality care for the people with SMDs. This perception appeared to stem from a deep sense of responsibility, emotional investment, and a sense of ownership over the care of the care recipient, as well as mistrust regarding financial issues and decision-making within the family. Caregivers expressed concern that other family members might not prioritise the care recipient’s well-being to the same extent or might lack the patience, understanding, and commitment required to manage the complex demands of caregiving. These reflections reveal how feelings of mistrust and ownership shape caregivers’ reluctance to delegate care and underscore the relevance of succession planning in such contexts. Nonetheless, the potential consequences of the absence of a succession plan remain significant and cannot be overlooked. In the event that the primary caregiver dies or ceases to provide care, the absence of a succession plan can lead to crises and emotional trauma for everyone involved, and cause unexpected dilemmas for other members of the family who may be ill-equipped to occupy this role [54]. In rural South Africa, where there is a limited institutional care for people with SMDs [53,54], the death of a primary caregiver may pose a serious risk for recurrent relapses and even homelessness. A study by Moyo et al. [55] conducted in South Africa reports that the death of a parent is a risk factor for homelessness among mentally ill persons.

Succession planning with clear action steps is necessary to ensure continuity of care for people with SMDs in the future. This may involve structured family meetings facilitated by mental health professionals, such as social workers or community-based mental health professionals, to support discussions about future care arrangements, clarify caregiving roles, and document responsibilities that the family has agreed to. Incorporating succession planning into discharge and follow-up processes could help families prepare for the delegation and transition of caregiving responsibilities. Training for community-based mental health professionals can help them facilitate these conversations, given the emotional and relational challenges that often accompany caregiving.

The continued stigma surrounding mental illness in communities remains a serious problem with substantial consequences for people with SMDs and their caregivers [56]. As highlighted in the findings of this study, conflicts with and exploitation by members of the community were reported to contribute to the strain of caregiving. This indicates that caregivers’ preoccupation with their care recipients’ well-being extends beyond the immediate demands of caregiving to concerns about the potential worsening of social conflicts, exploitation, and stigma in the community in the event of their death. The findings of this study are similar to those of previous studies conducted in rural South Africa and rural Canada that report that exploiting people with SMDs is common in rural and remote areas [56,57]. The families of people with SMDs are often blamed for the behaviour of their family members with mental illness and endure exploitation from community members who demand payment for damages caused by the care recipients [56,57]. These findings suggest that the ill-treatment that the caregivers witness their care recipients experience from the community heightens their preoccupation with concerns over the well-being of people with SMDs in the event of their death. This broader context amplifies the existential death anxiety experienced by caregivers, as they anticipate the challenges their care recipients may face and the potential disruption in care, reinforcing the intensity of their sense of responsibility and the weight of their caregiving role.

Conclusion

The findings of this study highlight the presence of existential crises among the informal caregivers, as evidenced in the distress and existential death anxiety established in this study. The challenges experienced by informal caregivers of persons with SMDs are multidimensional; therefore, interventions aimed at alleviating caregiver burden require multisectoral collaboration between the health sector, social development, local government, and community organisations. This requires immediate attention, as strategies for the care and support of informal caregivers should be developed and implemented to enable them to cope with the demands of caregiving.

Such strategies may include psychoeducation and support group interventions to enhance caregivers’ knowledge, provide peer support, and reduce feelings of isolation. Mindfulness-based approaches can be incorporated to help caregivers manage stress and emotional distress, while empowerment-focused programmes can strengthen caregivers’ confidence and agency in navigating their roles. Collectively, these strategies should equip informal caregivers with the knowledge and skills to support people with SMDs in structuring and performing daily activities, thereby facilitating the care recipients’ independence and reducing caregiver burden. Furthermore, caregivers should be empowered to take an active role in the planning and delivery of mental health services to ensure their appropriateness and sustainability, while also promoting caregivers’ own health and well-being.

On the policy level, the findings call for integration of caregiver support into national health frameworks, the needs of the caregivers including existential concerns, should be formally recognised in national mental health policies. Providing fee-free mental health services and integrating caregiver support into healthcare plans can reduce economic and psychological burdens that contribute to distress [58,59]. Policymakers should include informal caregivers as key stakeholders, particularly in low-resourced settings like rural South Africa, to ensure resources and services address the needs of both care recipients and caregivers. Adequate budgeting is essential to support effective implementation. There is a need for structured family-based interventions and succession planning, where family interventions, which can be facilitated by community-based mental health professionals, can clarify caregiving roles, document future care plans, and reduce anxiety about care continuity. Training of these mental health professionals should be provided to guide these discussions sensitively, considering the emotional and relational complexities involved. Participatory and task-shifting approaches, such as involving caregivers in the development of intervention programmes and policy can enhance agency and reduce feelings of helplessness. Task-shifting, where trained lay or mid-level workers such as community health workers deliver caregiver-oriented services, can help improve access and support within communities while also addressing the existential death anxiety experienced by caregivers. By providing guidance, emotional support, and tangible assistance, these workers can help caregivers manage fears about the continuity of care, reduce feelings of helplessness, and promote a sense of security regarding the well-being of their care recipients. Respite services and caregiver support programmes, including psychoeducation, support groups, mindfulness, and empowerment, can help reduce stress and prevent emotional exhaustion. In LMICs, formalising these services through policy development and implementation is essential to ensure sustainable, accessible, and equitable support. Embedding caregiver-focused interventions into national mental health strategies and allocating resources for their delivery can help address the multidimensional burdens caregivers face, including economic, emotional, and existential challenges such as death anxiety. Reducing stigma and improving access to community-based mental health services can reduce caregivers’ emotional and practical burdens, including existential death anxiety linked to concerns about care continuity. Policies should prioritise anti-stigma campaigns and integrate caregiver-focused mental health support into national and local health frameworks. Adequate financial and human resource allocation is essential to ensure caregivers receive appropriate support and that the needs of care recipients are met.

Given the exploratory nature of this qualitative study, future quantitative research is needed to measure the prevalence, intensity, and predictors of existential death anxiety among informal caregivers of people with SMDs. Such studies would enable generalisation of findings to broader rural South African populations. Studies should investigate succession planning and the role this plays in ensuring continuity of care following the death of the primary caregiver in mental health. Focus should also be directed towards investigating stigma reduction programmes to help reduce stigma towards people with SMDs and their caregivers.

Acknowledgments

We wish to acknowledge the informal caregivers in this study who were willing to share their caregiving experiences.