Abstract
Background: Children with cerebral palsy (CP) often experience feeding and/or swallowing difficulties (FSD), which are lifelong, necessitating long-term care by caregivers, particularly in resource-constrained contexts like South Africa. This ongoing responsibility can lead to burden and reduced quality of life (QoL) for the caregiver and child. Exploring caregivers’ experiences is required for planning and implementation of effective support services.
Objectives: The study aimed to explore the experiences of caregivers of children with CP who have FSD, regarding the burden, QoL and support needs.
Method: A qualitative case study design was used, involving eight mothers of children aged 2–8 years, recruited from a hospital-based CP clinic. Participants (aged 25–42 years) engaged in semi-structured telephonic interviews conducted in English and isiXhosa. Thematic analysis was conducted to generate themes and sub-themes.
Results: Thematic analysis yielded seven main themes: Worry; Feeding is everything; Identified support needs; What helps me cope?; Cost of caregiving; Hopeful caregiving and Shortfalls of healthcare system and society, reflecting emotional strain, the centrality of feeding, specific support requirements, caregiver resilience, multifaceted burden and hope.
Conclusion: Caregiver burden and QoL are closely linked and shaped by the emotional, physical, social and financial demands of caregiving. While caregivers described their unmet support needs, they also identified positive aspects of caregiving, including a sense of purpose and connection with their child.
Contribution: The findings offer insight into caregiver experiences in South Africa and underscore the need for tailored, contextually relevant interventions to improve caregiver well-being and child outcomes.
Keywords: cerebral palsy; caregiver burden; feeding difficulties; swallowing difficulties; quality of life; support needs; South Africa; low- and middle-income countries.
Introduction
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.
Research methods and design
Study design
A qualitative, descriptive case study design was employed to explore caregivers’ experiences, providing a nuanced, context-specific understanding of their lived experiences that may be less accessible through quantitative approaches (Flick, 2018). This design enabled rich, detailed accounts within a defined setting.
Study population and sampling strategy
The ‘case’ involved eight caregivers of children with CP attending an established CP clinic service within the Cape Metropole of Cape Town, South Africa. Participants were the primary caregivers of children (aged 0–12 years) with CP and FSD. Purposive and convenience sampling were used to recruit information-rich participants relevant to the study’s aim. Because of coronavirus disease 2019 (COVID-19) restrictions, potential participants were identified by the resident speech-language therapist, and with their permission, contacted telephonically by the researcher, with the assistance of the research assistant who acted as an isiXhosa interpreter where necessary. Information sessions were conducted telephonically in participants’ preferred language. Thereafter, potential participants were sent a photograph of the consent script for review, as not all had access to email. Once the participants were satisfied with the information provided and had had their questions answered, those who were willing to participate provided consent, which was recorded. A convenient time was scheduled for the interview.
Description of participants
All participants were mothers aged 25–42 years (mean = 29.25), caring for children aged 2–8 years (mean = 4.63). Six children were male. Feeding methods varied: five oral, one percutaneous endoscopic gastrostomy (PEG) and two mixed oral and PEG. Participant demographics are summarised in Table 1.
| TABLE 1: Demographic description of participants. |
Data collection
An interview guide was developed using seven open-ended questions, aligned with Krueger’s (2015) structure and informed by the Feeding/Swallowing Impact Survey (Lefton-Greif et al., 2014). Four interviews were conducted in English by the researcher and four in isiXhosa by the assistant, with the researcher present. Disruptions because of signal loss were managed with summary prompts upon reconnection. Interviews were audio-recorded for transcription. Summaries of the interview data were confirmed with participants at the end of each interview.
Data analysis
Thematic analysis was employed to identify and interpret patterns within the data, enabling the development of key themes and sub-themes related to caregivers’ experiences (Gray, 2018). Audio-recorded interviews were anonymised and transcribed by the researcher and isiXhosa assistant, who also translated isiXhosa transcripts into English. The researcher engaged in data familiarisation through repeated reading (Flick, 2018; Gray, 2018). Transcripts were independently reviewed by the researcher and supervisor for accuracy. Manual coding was undertaken by the researcher using colour highlighting to identify emerging ideas. Related codes were grouped into meaning units, then organised into sub-themes and themes. The researcher and supervisor collaboratively mapped codes into thematically coherent categories, with supporting participant quotations tabulated to enhance trustworthiness. Data and themes were revisited to ensure accuracy and faithful representation of caregivers’ experiences. Themes were reviewed by the research co-supervisor, independent of the coding process, to confirm alignment with the data and core concepts (Gray, 2018). Themes were refined and named to reflect their conceptual meaning.
Trustworthiness was established through credibility, transferability and confirmability (Patton, 2015). Credibility was supported by pilot testing the interview guide and informal member checking during interview summaries (Gray, 2018). Interviews were transcribed verbatim and independently reviewed by the researcher and supervisor. Analyst triangulation and advocacy–adversary analysis (Patton, 2015) were used to enhance credibility through collaborative theme validation. Data source triangulation through cross-checking the consistency of data across interviews and frequent debriefing sessions helped mitigate bias and refine interpretations (Flick, 2018). A consistent set of interview questions supported transferability. While the findings are context-specific, the detailed methodology enables replication in other settings. Finally, reflexivity was maintained via a journal and regular supervisory meetings to reflect on positionality and potential bias (Flick, 2018). Audio recordings and direct quotes ensured that findings were supported by participant data.
Ethical considerations
Ethics approval was granted on 02 April 2020 by the University of Cape Town Faculty of Health Sciences’ Human Research Ethics Committee (HREC 097/2020), with specific amendments to adhere to COVID-19 regulations and restrictions. The study was registered with the National Health Research Database (WC_202009_056), and permission was obtained from the research site. The study adhered to the ethical principles outlined in the Declaration of Helsinki (World Medical Association [WMA], 2025). Ethical research conduct was ensured by upholding the principles of autonomy through informed consent; confidentiality and anonymity by using participant codes and removing identifying information; non-maleficence and beneficence – there was no risk of physical harm to the participants and counselling support was available on site if needed and justice in equal and fair opportunity for inclusion in the study.
Results
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.
Theme 1: Worry
Caring for a child with CP and FSD generates significant worry for mothers. Key concerns included swallowing safety, growth, nutrition, sickness, death and the child’s future QoL. Caregivers expressed heightened concern over feeding, particularly the risk of choking (Table 2).
| TABLE 2: Theme 1: Worry – participant quotes. |
Theme 2: Feeding is everything
Caregivers underscored the dominant role of feeding in their lives, noting its time-consuming nature, the child’s dependence and the emotional and physical demands of feeding tasks (Table 3).
| TABLE 3: Theme 2: Feeding is everything – participant quotes. |
Theme 3: Identified support needs
Caregivers identified several unmet support needs that, if met, could reduce caregiver burden and improve QoL. The caregivers emphasised the need for clearer information and guidance from healthcare professionals, regular professional contact and reassurance and social support. Table 4 summarises the relevant subthemes.
| TABLE 4: Theme 3: Identified support needs – participant quotes. |
Theme 4: What helps me cope?
Despite unmet needs, caregivers were able to identify several available intrinsic and extrinsic supports that facilitated their capacity to cope. A social support network, self-taught coping strategies, religion and spirituality and practical support from the healthcare system were the most posited coping facilitators. Although participants identified a lack of mother-to-mother support, relationship-specific support from family, friends, neighbours, healthcare professionals and their community was valued and provided relief for caregivers (Table 5).
| TABLE 5: Theme 4: What helps me cope? – participant quotes. |
Theme 5: Cost of caregiving
The ‘cost of caregiving’ included financial, emotional and social sacrifices, with caregivers detailing the impact of being a caregiver of a child with CP and chronic FSD on their employment status, financial stability, physical and emotional health and social participation. Table 6 outlines the associated subthemes and illustrative quotations for this theme.
| TABLE 6: Theme 5: Cost of caregiving – participant quotes. |
Theme 6: Hopeful caregiving
Despite challenges, caregivers felt a deep sense of hope and connection as they observed positive changes, established realistic goals and maintained a future-focused outlook. Many attributed the positive changes in their child and their relationship to their caregiving efforts (Table 7).
| TABLE 7: Theme 6: Hopeful caregiving – participant quotes. |
Theme 7: Shortfalls of healthcare system and society
The participants noted barriers related to the access and quality of healthcare services exacerbated by the COVID-19 pandemic, social support, infrastructure and a lack of disability awareness (Table 8).
| TABLE 8: Theme 7: Shortfalls of healthcare system and society – participant quotes. |
Discussion
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).
Limitations
While this qualitative study offers rich insights, it also has limitations. The purposive sampling technique and case study design limit the ability to generalise findings to a broader caregiver population. Additionally, because of COVID-19 restrictions, data collection shifted from focus groups to telephonic interviews, which, while safe, meant that participants’ nonverbal cues could not be observed and rapport building was reduced.
Clinical implications
The findings underscore the importance of incorporating caregivers’ experiences in healthcare research to understand the impact of caregiving on their QoL and to guide the development of sustainable interventions. Healthcare professionals, particularly speech-language therapists, should consider combined interventions that address both the child’s feeding needs and the caregiver’s well-being. A family-centred approach is essential, offering culturally relevant materials and access to appropriate support networks. In LMICs, socioeconomic barriers may hinder the effectiveness of support services, suggesting a need for collaboration between healthcare professionals, caregivers, government bodies and non-government organisations. The insights from this study, particularly in the context of LMICs like South Africa, are valuable for informing targeted interventions aimed at improving the caregiving experience. Future studies could further build on these findings to enhance support for caregivers of children with CP and FSD.
Conclusion
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.
Acknowledgements
This article includes content that overlaps with research originally conducted as part of Raquel Lewis née Le Roux’s master’s dissertation titled ‘Caregivers’ perceptions of caregiver burden, quality of life and support needs in caring for a child with cerebral palsy with feeding and/or swallowing difficulties within the context of the Western Cape, South Africa’, submitted to the Faculty of Health Sciences, University of Cape Town in 2023. The thesis was supervised by Vivienne Norman and co-supervised by Michal Harty. Portions of the data, analysis and/or discussion have been revised, updated and adapted for journal publication. The original thesis is publicly available at: https://open.uct.ac.za/items/8afbdf2a-9628-4b04-bd93-9b14efb4edd1. The author affirms that this submission complies with ethical standards for secondary publication, and appropriate acknowledgement has been made of the original work.
The authors acknowledge Michelle Pascoe, Ph.D., for editing a draft of this manuscript.
Competing interests
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article. The author, M.H., serves as an editorial board member of this journal. The peer review process for this submission was handled independently, and the author had no involvement in the editorial decision-making process for this manuscript. The author has no other competing interests to declare.
Authors’ contributions
R.L., M.H. and V.N. conceptualised the study and methodology. R.L. undertook the analysis and investigation and wrote the first draft of the manuscript. V.N. was the primary supervisor who assisted with analysis, project administration, data curation, resources, review and editing. M.H. was the co-supervisor who reviewed and edited the final manuscript. All authors contributed to the article, discussed the results, and approved the final version for submission and publication.
Funding information
Raquel Lewis née Le Roux received partial funding in 2022 from the University of Cape Town Faculty of Health Sciences’ Postgraduate Training Grant.
Data availability
The authors confirm that the data supporting the findings of this study are available within the article.
Disclaimer
The views and opinions expressed in this article are those of the authors and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.
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