The study included 17 informal caregivers of people living with MND, all of whom identified as white people. The sample was predominantly female (95%), aged 31–76 years (median: 53). Most (94%) cared for male recipients and had a direct familial tie, including wives (n = 10), daughters (n = 2), a sister, a husband, a granddaughter, and two women who were in a relationship with the patient.

Regarding marital status, 11 were married or in a relationship, 4 were widowed and 2 were single. Employment varied: 7 were employed, 3 self-employed, and 7 unemployed. 14 participants had children while caregiving.

Caregiving duration ranged from 7 months to 4 years (average: 2 years, 2 months). At data collection, 76.5% were still actively caregiving, while 23.5% had completed their role because of the care-recipient’s death.

Interviews were conducted online because of caregiving demands, with one held in person. Interviews lasted 45 to 90 min, were recorded digitally and transcribed verbatim.

A semi-structured format was used. The first section invited participants to share their caregiving experiences, from diagnosis to daily challenges, while the interviewer ensured focus and opportunity for emotional expression.

The second section addressed predefined topics such as emotional and physical burden, financial strain, social support, coping mechanisms and healthcare experiences. The guide was refined throughout to support comprehensive data collection. While it provided structure, interviews remained flexible to capture individual perspectives.

The analysis followed a systematic approach, beginning with familiarisation through re-reading transcripts and revisiting recordings. Braun and Clarke’s six-step thematic analysis method was applied (Braun & Clarke 2006). In the initial phase, we generated codes by identifying key concepts. These were grouped into broader themes, which were reviewed and refined through multiple analysis rounds. Redundant or irrelevant themes were discarded. In the final phase, themes were applied to the full dataset and validated by revisiting transcripts to ensure accurate representation of caregiver experiences. This process resulted in a refined set of themes presented in the final report.

Ethical clearance to conduct this study was obtained from the Psychology Departmental Ethics Screening Committee (DESC) and the Health Research Ethics Committee of Stellenbosch University (No. S23/04/089). Because of the study’s sensitive nature, ethical protocols ensured participant well-being and confidentiality. Distressed participants were offered immediate termination of interviews and referred to no-cost support services, including Lifeline and the South African Depression and Anxiety Group (SADAG). Follow-up support was provided when consented to. Participants were informed that pseudonyms would be used in all outputs, and detailed information was given regarding recording, transcription and data access procedures.

A notable challenge reported by informal caregivers was their limited understanding of MND, compounded by broader community ignorance. For many, the initial diagnosis brought confusion and uncertainty. Participants described the disease as very confusing and caregiving as new territory that they had to navigate with little preparation. Several stressed the absence of formal instruction, saying they themselves:

Most caregivers relied on trial and error to manage complex needs; only one had the rare chance to attend a workshop. This knowledge gap contributed significantly to emotional distress, with one caregiver describing the experience as:

Communication challenges with care recipients heightened feelings of isolation.

Beyond personal knowledge gaps, caregivers highlighted public misunderstanding of MND as a major obstacle.

One caregiver stated:

Another participant described difficulties with institutions, yet staff often failed to accommodate these limitations, explaining that:

Misidentification of MND as other, more familiar conditions, such as multiple sclerosis, further demonstrated the widespread lack of awareness and contributed to caregiver frustration.

Participants strongly emphasised the need for increased public and professional education regarding MND. These narratives illustrate not only the practical difficulties associated with caring for an individual with MND but also the urgent need for greater societal awareness, professional training and systemic support to meet the unique demands of MND caregiving.

Another challenge experienced by informal caregivers of individuals with MND in South Africa was the persistent issue of loadshedding. Loadshedding, often experienced in developing countries as a result of limitations in electricity generation capacity, involves scheduled power outages that disconnect large sections of the grid, leaving households without electricity for extended periods (Oluwasuji et al. 2020). For MND caregivers, this disruption posed life-threatening risks because of patients’ dependence on electricity-powered medical equipment. One such device is the bilevel positive airway pressure (BiPAP) machine, a non-invasive ventilation system essential for supporting the breathing of MND patients. During outages, BiPAP machines become inoperable, triggering intense anxiety and panic among caregivers. One caregiver recalled:

The psychological burden of these outages was considerable, leaving caregivers in a constant state of hypervigilance and fear. Even attempts to mitigate these risks by using inverters were often insufficient. One caregiver explained:

This unpredictability compounded psychological distress, forcing caregivers to manage both the physical consequences of outages and the ongoing emotional strain of being constantly on alert.

Caregivers unanimously felt that solar power was the only sustainable solution, offering reliable electricity and much-needed peace of mind amid the ongoing energy instability.

Caregivers of individuals with MND expressed deep frustration and emotional exhaustion over interactions with medical professionals. A common theme was a lack of empathy, guidance and understanding. Doctors were often described as blunt and uncommunicative, with little regard for the emotional impact of a terminal diagnosis. One caregiver recounted the doctor’s detached delivery:

Another likened the experience to being:

Such encounters heightened distress and isolation.

Nurses, too, were often untrained in MND care, adding to caregivers’ burdens. Participants described having to guide staff on basic procedures, such as preventing pressure sores or communicating with non-verbal patients.

One caregiver recalled a nurse asking her to spell ‘motor neuron’ to look it up online. Misperceptions about patients’ cognition were common, with staff sometimes treating patients as ‘stupid’, despite their being cognitively intact. One caregiver shared how her sister, unable to speak, mouthed that she was hungry, only for nurses to ‘laugh and walk away’. These dismissive and dehumanising interactions fostered mistrust.

In one instance, a caregiver’s concerns were dismissed until she reminded staff:

Another participant described the experience as ‘very robotic’ and lacking support, comfort and empathy.

Caregivers reported that MND profoundly disrupted spousal relationships, replacing emotional intimacy with clinical responsibility. Many described the painful shift from partner to caregiver, feeling ‘cut off’ and emotionally estranged. Fleeting moments of normalcy were overshadowed by caregiving demands:

Several participants noted that caregiving consumed their identity, creating role confusion and exhaustion. One explained:

Intimacy eroded under the weight of daily care tasks:

This burden extended to caregivers’ sense of self, with grief over lost interests and identities. One said:

Another added:

Former hobbies and self-care were sacrificed, leading to personal depletion:

Collectively, these accounts highlight the psychological burden of caregiving: loss of intimacy, identity erosion, and ongoing emotional and physical strain, compounded by limited support.

Informal caregivers experienced significant physical strain, mainly because of disrupted sleep and constant nighttime caregiving demands. Many described waking up hourly to assist with basic needs, leaving them exhausted during the day. One caregiver shared:

Balancing work and caregiving compounded this fatigue:

In addition to fatigue, caregivers experienced physical strain from lifting and assisting their loved ones, often leading to back and neck problems. One caregiver noted:

Poor posture over time aggravated these issues:

Some participants received medical warnings about potential long-term health impacts, including autoimmune diseases, because of a lack of rest. Despite this, finding time for self-care or medical attention was challenging. One caregiver explained:

While one male caregiver reported becoming fitter because of the physical demands, the overall toll on caregivers’ health and well-being was considerable. One concluded:

Caregivers of individuals with MND experienced significant social burden, marked by isolation, strained relationships and emotional fatigue. All participants reported a decline in social life because of caregiving demands.

Even brief moments of socialisation were overshadowed by guilt and anxiety. One caregiver shared:

While another said:

Many described increasing isolation, both practical and emotional. One participant explained:

Others withdrew socially for extended periods:

Time constraints and exhaustion left caregivers without energy or opportunity to engage socially.

Participants also expressed anxiety about emergencies occurring while away, stating:

Furthermore, asking others for help often provoked guilt:

Physical accessibility also posed challenges with:

Even when socialising was possible, caregivers noted strict time limits:

The combined effects of isolation, fatigue and strained relationships left caregivers feeling detached from their communities. One participant concluded:

Participants consistently reported severe financial strain following an MND diagnosis. All care recipients had been employed before diagnosis, and the resulting loss of income placed immense pressure on families. This burden was worsened by the high cost of essential equipment and ongoing medical expenses.

Caregivers highlighted the unaffordability of medication, described as ‘exorbitantly expensive’, alongside specialised equipment required for care. Financial strain was further compounded by emergency medical needs and limited medical aid coverage. One caregiver reflected:

Medical aid schemes in South Africa were widely seen as inadequate. Participants reported being denied funding for essential items and services, including communication devices and home-based care. One caregiver remarked sarcastically with frustration:

Participants also expressed a sense of abandonment by the healthcare system and called for policy reform to better support families affected by MND.

Caregivers of individuals with MND experienced a range of emotional burdens, including anxiety, depression, anger and guilt. Anxiety was constant, driven by fear and uncertainty. One caregiver stated:

Depression was also common, with caregivers describing persistent sadness and anticipatory grief:

Anger and frustration arose as caregivers grappled with life changes. One said:

While another admitted:

Though mentioned less often, guilt remained a burden. Some participants felt torn between caregiving and other roles:

Others questioned their adequacy:

Together, these reflections highlight the psychological toll of caregiving: chronic emotional strain, grief and inner turmoil, underscoring the need for greater emotional support.

Caregiving for individuals with MND is impacted by both the disease’s demands and caregivers’ personal and environmental circumstances. This study uses ‘circumstantial challenges’ to describe these burdens. Most participants were women with a median age of 53, similar to international findings (Conroy et al. 2021; Galvin et al. 2018). Younger caregivers balancing work and children reported higher stress, while older, often retired caregivers experienced less burden (Chiao, Wu & Hsiao 2015). Women described more emotional strain, reflecting previous research (Revenson et al. 2016). These factors compound the challenges of MND caregiving.

Limited knowledge about MND added to emotional and practical strain. Participants reported confusion about the disease, echoing international literature (Tang et al. 2021). The lack of accessible information in South Africa worsened this, highlighting the need for educational interventions (Alankaya & Karadakovan 2015). This knowledge gap led to self-doubt among caregivers, while poor community awareness created additional administrative challenges.

A unique challenge was loadshedding, previously unexplored in caregiving research. Power outages heightened anxiety, especially for those using power-dependent medical devices. This finding aligns with Bentley (2023) and Marchetti-Mercer (2023), who noted loadshedding’s psychological distress. This study extends those findings by showing caregivers’ fear of life-threatening risks during outages. Alternatives such as inverters were often unaffordable, underscoring the need for reliable power.

The objective burden of care includes tangible demands such as time, physical effort and financial costs (Jones 1996), which are central to the caregiving experience and linked to perceived burden (Gallant 2017). Schene, Tessler and Gamache (1994) identify four areas this burden manifests: (1) direct caregiving tasks, (2) indirect responsibilities, (3) managing emotional needs, and (4) daily life disruptions. This study’s findings reflect all four.

Physical strain was common, with caregivers reporting exhaustion, musculoskeletal pain and injuries, especially older women caring for larger male patients, consistent with MND’s higher male prevalence (Daude & Chowdhury 2017; Henning et al. 2021). Sleep deprivation and stress worsened these issues, with women more vulnerable than men (Revenson et al. 2016).

Social disruptions and indirect responsibilities were significant. Caregivers experienced isolation because of a lack of time and energy for social life, avoiding events because of guilt, a lack of enjoyment and mental preoccupation (Thrush & Hyder 2014), all of which indicate the impact of caregiving on physical and social well-being.

Financial strain was another major burden. Most caregivers lost income, with many leaving jobs for full-time care. Medical and equipment costs were high, compounded by limited welfare support and exclusion of MND from medical aid ‘dreaded disease’ lists, leaving caregivers unsupported (Malakoane et al. 2020; Statistics South Africa 2019).

Healthcare difficulties further compounded the objective burden. Caregivers described poor support from professionals at diagnosis and post-diagnosis (Aoun et al. 2016; O’Brien et al. 2011). Limited resources and high patient load in South Africa’s health system likely contribute to care gaps (Kipp et al. 2007). Untrained staff and occasional unprofessional conduct increased strain, with caregivers sometimes providing basic care themselves (Kisorio & Langley 2019). These findings highlight the urgent need for improved MND training, communication and empathy among healthcare providers to support patients and caregivers.

Subjective burden refers to caregivers’ personal evaluations of their circumstances and the perceived demands of caregiving (Liu, Heffernan & Tan 2020). Schene et al. (1994) describe subjective burden as distress, guilt, worry, shame and stigma, often triggered by caregiving’s physical and logistical demands. In this study, caregivers reported subjective burdens across daily life, encapsulated in three themes: loss of self and love, guilt, and emotional strain.

The first theme was a perceived loss of self and love, especially among spousal caregivers. Participants described sacrificing careers, social lives and interests, resulting in diminished identity. Nearly half of those in relationships noted reduced affection as roles shifted from partner to caregiver. This loss of intimacy led to emotional fatigue and loneliness (Oh, Kim & Chu 2021; Thrush & Hyder 2014). Though not a traditional sub-theme, this loss regularly triggered distress and relational strain, thereby justifying its inclusion.

Guilt also emerged as a prevalent emotional response. Caregivers stated that they felt guilty for prioritising their needs or comparing themselves to others. Guilt, as defined by Losada et al. (2010), arises from perceived failure to meet expectations. A lack of support intensified these feelings, increasing self-blame and exhaustion (Muro Pérez-Aradros et al. 2023). Evidence suggests that psycho-educational interventions that build confidence and knowledge may help reduce guilt and improve caregiver coping (Gallego-Alberto et al. 2021; Theißen et al. 2024).

The broader emotional impact included persistent worry, sadness and frustration, especially during diagnosis.

Notably, 88% experienced delayed diagnoses, higher than global averages, exacerbating distress and reducing trust in healthcare (Donaghy et al. 2008). Emotional strain remained high throughout the disease trajectory, with many caregivers describing symptoms of depression and psychological overwhelm (Soundy & Condon 2015; Trail et al. 2003). These needs were often overlooked, reinforcing what Adelman et al. (2014) call the ‘invisible patient’. Worry was linked to MND’s unpredictable progression (Flemming et al. 2020). Many caregivers also reported frustration with loss of autonomy, but often suppressed these feelings, intensifying distress.

A thorough understanding of subjective burden is key to effective intervention. Braithwaite (1992) argues that recognising internal experiences reveals stressors often overlooked by focusing on objective burden alone. Themes such as loss of self, guilt and emotional fatigue should inform support strategies addressing both visible and hidden aspects of caregiving.

This study addresses a gap in South African research by exploring adult informal caregivers of individuals with MND, a group often overlooked in favour of younger caregivers or high-income country populations. It provides local insights into caregivers’ emotional and practical challenges in a resource-limited context and lays a foundation for future intervention research. Using interviews enabled rich, nuanced data, enhancing the authenticity of participants’ accounts. However, the small, mostly female and racially homogenous sample limits generalisability. The demographic composition of the participants, predominantly white, female caregivers, likely reflects a more resource-advantaged subgroup within the broader South African context, which may have influenced the perspectives and challenges reported. Participants were self-selected, and most were from urban areas, which may not fully reflect the experiences of caregivers in rural regions.

As the study focused solely on the perspectives of informal caregivers, data from other relevant stakeholders, such as healthcare professionals, policymakers and individuals living with MND, were not collected. This limits the ability to capture a more holistic understanding of the caregiving experience.

The lack of local MND caregiving literature made contextualising findings challenging, and conducting interviews exclusively in English may have excluded some participants. Additionally, most interviews were conducted virtually, which, while necessary for accessibility, may have influenced participant comfort and the depth of responses.

Further studies, including quantitative research and formal needs assessments, are urgently needed to better support informal MND caregivers in South Africa. Given that this study was based on a small, relatively homogeneous sample of predominantly white, female caregivers, the recommendations below should be interpreted within this demographic context. The insights primarily reflect the experiences of caregivers with similar socio-economic and cultural backgrounds and therefore require validation across more diverse populations.

This study revealed significant emotional, financial and systemic burdens, including inadequate post-diagnostic support, lack of empathetic healthcare and high isolation. Findings highlight the need for psycho-educational interventions and accessible support groups to address caregivers’ distress and lack of guidance. To enhance the practical implementation of such initiatives, collaboration among key stakeholders, including the Department of Health, NGOs, professional training institutions and community-based organisations, is recommended.

Improved healthcare professional training is recommended to raise awareness and responsiveness, as poor communication and MND knowledge were common concerns. Community awareness initiatives are needed to reduce stigma and exclusion. However, these proposed interventions should be viewed as preliminary and most applicable to caregivers similar to those represented in this study. Broader research involving caregivers from varied racial, linguistic and socio-economic groups, as well as perspectives from other stakeholders, is essential to further refine and generalise these recommendations.

Furthermore, financial support, such as equipment subsidies and medical aid reforms, is essential to ease costs and employment sacrifices reported by many caregivers. Future policy work should consider the feasibility and equity implications of these recommendations across the diverse South African caregiving population.