Advances in global child health have led to reductions in child mortality. However, they have also contributed to a rising prevalence of childhood disability, particularly in low- and middle-income countries (LMICs) (Nannan et al., 2019). Cerebral palsy (CP), a non-progressive disorder of movement and posture caused by early brain damage (Bax et al., 2005), remains the most common cause of childhood disability worldwide (Oskoui et al., 2013). In South Africa, estimates suggest a higher prevalence than in high-income countries (Maphumulo & Bhengu, 2019).

Conventional healthcare responses to CP are shaped by the biomedical model, focusing narrowly on physical impairments (Leite et al., 2021). In contrast, social and family-centred models, such as the World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF), advocate for broader, context-sensitive approaches that consider the environmental and familial impact of disability (Abdel Malek et al., 2020). Cerebral palsy is a lifelong disability requiring healthcare resources and continuing care (Sewell et al., 2014). In many cases, children with CP experience associated impairments, such as feeding and/or swallowing difficulties (FSD). These difficulties are prevalent in children with CP, ranging between 37% and 99%, with increased risk in those with severe motor impairment (Goday et al., 2019; Speyer et al., 2019). The consequences of FSD include malnutrition, dehydration, aspiration pneumonia, respiratory complications and increased hospitalisation risk (Blackmore et al., 2018; Damrongmanee et al., 2021), as well as disruptions to family dynamics, increased caregiver stress and a potentially negative impact on both the child’s and caregiver’s quality of life (QoL) (Greer et al., 2008; Lefton-Greif et al., 2024; Liu et al., 2020).

Feeding and/or swallowing difficulties significantly heighten caregiver burden by complicating basic caregiving tasks and increasing psychological, emotional, physical, social and financial strain (Davis et al., 2010; Sewell et al., 2014), resulting in negative health and QoL consequences. For example, caregivers are advised by healthcare professionals to incorporate modified diets, such as thickening feeds, or feeding techniques, such as positional changes and lateral feeding, to ensure feeding and swallowing safety. Such modifications and techniques require effort and preparation and are generally time consuming and challenging to put into practice (Davis et al., 2010). In addition, the financial cost of specialised foods, supplements, and assistive devices may exhaust the caregiver’s financial resources (Okada et al., 2022). Feeding-related responsibilities further limit caregivers’ engagement in social or professional activities and often lead to internalised stigma and feelings of guilt, especially when non-oral feeding methods such as gastrostomy are introduced (Morrow et al., 2008; Petersen et al., 2006). The demands and responsibilities associated with FSD are all-encompassing for caregivers, who are simultaneously balancing other personal, family and professional obligations (Murphy et al., 2007).

Caregivers assume intense home-based care responsibilities (Davis et al., 2010; Pretorius & Steadman, 2017), and the caregiver’s QoL may be significantly compromised by the cumulative effect of caregiving demands, emotional stress and limited social participation (Polack et al., 2018). The quality of caregiver relationships with partners, extended family, peers and healthcare professionals has a marked influence on coping and self-perception (Hewetson & Singh, 2009; Morrow et al., 2008). Yet, in many cases, caregivers report feeling disempowered by interactions with health professionals, who may discount caregivers’ knowledge or reinforce shame (Hartley et al., 2005). While some caregivers find personal growth, advocacy skills and emotional resilience through caregiving (Bailey & Harrist, 2017), overall caregiver QoL remains fragile, especially in resource-constrained settings where support structures are limited or inaccessible (Pretorius & Steadman, 2017).

The caregiving experience in LMICs is mostly understood based on insights derived from studies in high-income countries. However, many challenges and stressors are unique to caregivers in LMICs (Lefton-Greif et al., 2024). Structural barriers such as food scarcity, inaccessible transportation and insufficient rehabilitation services in LMICs exacerbate the burden on caregivers (Dambi et al., 2015; Thrush & Hyder, 2014). A study examining the caregiving experience of mothers of children with CP in Zimbabwe, identified that the physical burden of caregiving is exacerbated in such contexts because of the lack of adapted transport services and assistive devices (Dambi et al., 2015). Consequently, mothers resort to the conventional method of carrying their child on their back for transporting and transferring purposes, raising the risk of back pain and injury. Thus, caregivers in LMICs face a significant and neglected burden in physical, psychological, social, financial and time domains (Thrush & Hyder, 2014).

Well-structured, multicomponent psychosocial interventions enhance caregiver competence, self-efficacy and coping capacity (Reinhard et al., 2008). However, access is frequently hindered in LMICs because of infrastructural, linguistic, financial and sociocultural barriers (Pretorius & Steadman, 2017). Peer-support and community-based programmes – such as South Africa’s Malamulele Onward and Uganda’s Akwenda CP programme – have emerged as locally grounded solutions with the potential to improve caregiver QoL and knowledge, particularly around feeding practices (Saloojee et al., 2021; Zuurmond et al., 2019). Complementary online and telephonic interventions also hold promise for increasing accessibility, though technological limitations in LMICs may be challenging (Taylor et al., 2021). Social networks and respite services are valuable protective factors against caregiver burnout yet are limited in LMICs (Moriwaki et al., 2022; Pretorius & Steadman, 2017). Financial aid (e.g., care dependency grants) is often inadequate or inaccessible, further exacerbating caregiver burden in LMICs (Vadivelan et al., 2020).

Given that caregiver well-being is closely linked to the quality of care and overall well-being of the child, a nuanced understanding of caregiver burden – particularly in relation to FSD – is essential for developing contextually appropriate and caregiver-sensitive interventions (Lefton-Greif et al., 2024). Caregiver perspectives, particularly in resource-constrained settings, remain underexplored despite being central to managing FSD and ensuring successful feeding interventions (Dambi et al., 2015; Pretorius & Steadman, 2017). This study therefore sought to address this gap by exploring caregivers’ experiences of caregiver burden, QoL and support needs in caring for a child with CP who has FSD within the context of the Western Cape, South Africa.

Seven main themes emerged from the data analysis: Worry, Feeding is everything, Identified support needs, What helps me cope?, Cost of caregiving, Hopeful caregiving and Shortfalls of the healthcare system and society (Le Roux, 2023). These themes, along with their corresponding sub-themes, are presented in Figure 1.

The study identified several main themes in caregivers’ perceptions of burden, QoL and support. The themes of Worry, Feeding is everything, Identified support needs, What helps me cope?, Cost of caregiving, Hopeful caregiving and Shortfalls of healthcare system and society demonstrated that caring for a child with CP who also has FSD has a significant impact on the lives of caregivers. The themes and sub-themes highlight the tension between the needs of the child and those of the caregiver, where the child’s well-being often conflicts with that of the caregiver. These findings emphasise the importance of a shift towards a family-centred approach and the use of frameworks like the ICF, which address both the child’s and the caregiver’s needs (Abdel Malek et al., 2020), as caregivers often require care as much as the children they care for (Reinhard et al., 2008).

The study found a mirroring of themes, where certain aspects of caregiving both helped and hindered caregivers’ ability to cope. For example, support from family, friends, community members and healthcare professionals was crucial in coping with caregiving tasks. However, caregivers also experienced loneliness, limited respite and strained relationships. This duality supports the assertion that while social support networks can mitigate caregiver burden and improve QoL (Taylor et al., 2021), caregiving also leads to isolation and reduced QoL (Davis et al., 2010). A similar duality was observed in the support received from the healthcare system. Positive interactions, such as receiving nutritional supplements and specialised seating, alleviated some of the caregivers’ physical and financial burdens. However, negative encounters with inconsistent service provision increased caregivers’ burden and challenges, reflecting the findings of Morrow et al. (2008), where caregivers reported both beneficial and unsatisfactory healthcare experiences. The themes illustrated the multifaceted strain of caregiving, as identified by Liu et al. (2020), encompassing emotional, social, physical and financial stressors. The combination of these challenges underscores the complexity of caregiver burden.

The theme of Worry captured the emotional strain caregivers felt regarding feeding-related tasks and potential adverse consequences of FSD. Caregivers’ worry appeared chronic, stemming from concerns of choking, inadequate nutrition and aspiration. These feeding-related anxieties have been recognised in other studies as significant sources of caregiver stress, negatively affecting their QoL (Jones et al., 2018; Polack et al., 2018; Taylor et al., 2021). The challenge of ensuring the child’s safety and well-being while meeting their nutritional needs led to feelings of self-doubt, echoing previous findings where caregivers questioned their competence (Greer et al., 2008; Hewetson & Singh, 2009).

Feeding is everything emphasised the centrality of feeding in caregivers’ daily lives, where time and effort were devoted to nourishment, leaving little room for socialisation or work. This aligns with Taylor et al.’s (2021) concept of a ‘child-centred world’, where caregivers’ lives revolve around feeding-related activities. Time constraints were a major concern, with caregivers needing to be patient and focused on their child’s comfort. Notably, the time burden of caregiving was similar regardless of whether the child was fed orally or via a tube, an unexpected finding considering the assumption that tube feeding might be less time consuming. This could be explained by factors such as the time required for training, maintaining the feeding site and addressing the child’s tolerance of the feeds, as proposed by Sleigh (2005).

The Cost of caregiving theme underscores the negative impact on caregivers’ well-being, with emotional strain, depression and anxiety frequently reported as a result of the responsibilities of caring for a child with CP and FSD. These feelings, consistent with previous research, correlate with a decline in caregiver QoL (Gugała, 2021). Social strain also emerged as a significant challenge, with caregivers experiencing isolation because of limited opportunities for social participation, which further exacerbated depressive symptoms (Polack et al., 2018; Zuurmond et al., 2019). The physical burden, particularly related to the musculoskeletal pain associated with long feeding sessions, and the financial strain, primarily because of caregivers leaving employment to provide full-time care, reflect a broader theme of caregiver burden (Dambi et al., 2015; Sleigh, 2005; Taylor et al., 2021). Financial strain was compounded by costs for specialised foods and transport, emphasising the heightened difficulty in LMICs where resources are limited.

Participants identified a need for information and education from healthcare professionals on how to manage their child’s FSD, in the form of paper-based documents and practical training and coaching. This highlights the importance of interventions that enhance caregiver competence and confidence in providing care, as a means of reducing caregiver burden and increasing coping ability (Reinhard et al., 2008). The caregivers also reported a need for social support in the form of support groups and counselling, particularly mother-to-mother support groups. Caregivers perceived specific value in connecting with other mothers caring for children with CP and FSD, as they may benefit from the understanding and validation not found in other groups. Psycho-educational interventions that make the caregiver the main recipient of support may help to reduce burden and improve QoL (Reinhard et al., 2008). These findings are significant as they indicate that while the burden faced by caregivers of children with FSD has been recognised in the literature, it has not resulted in a shift in management approaches.

The impact of the COVID-19 pandemic exacerbated these challenges by increasing caregivers’ responsibilities and limiting access to healthcare and emotional support. Healthcare systems need to develop remote and accessible interventions to support caregivers during crises (McKinney et al., 2021). Despite these adversities, caregivers displayed resilience through coping strategies, balancing both problem- and emotion-focused approaches to manage the caregiving burden.

Finally, while caregiving was associated with significant challenges, the theme Hopeful caregiving revealed that caregivers also found purpose and fulfilment in their role, contributing to positive QoL outcomes. This reflects findings from previous research that caregiving can lead to personal growth and redefined priorities (Bailey & Harrist, 2017; Cohen et al., 2002).

Caregiver burden and QoL are intertwined and shaped by the complex emotional, physical, social and financial demands of caregiving. Caregivers expressed a range of unmet support needs, highlighting the need for targeted, context-specific interventions to improve their well-being. Despite the challenges, caregivers also identified positive aspects of caregiving, including a sense of purpose and connection with their child. This study contributes valuable insights into caregiver experiences in a LMIC context.