Feeding and swallowing disorders, hereafter referred to as dysphagia, are common in infants and children with CHDs, with the highest reported prevalence in neonates (83%) Reference McGrattan, McGhee and DeToma1 and young infants (84%). Reference Pereira, Firpo and Gasparin2 Dysphagia may contribute to respiratory illness, poor weight gain, longer hospital stays, and increased stress for caregivers. Reference Hehir, Cooper, Walters and Ghanayem3 The stress experienced by caregivers is related to their concerns about the safety of their child’s swallowing and the increased risk of illness; nutritional concerns; the impact of dysphagia on the family; increased demands of caretaking related to time, physical well-being, and specific activities related to feeding; financial strain; and social isolation. Reference Banhara, Farinha and Bom4–Reference Garro, Thurman, Kerwin and Ducette7
Increased stress and reduced quality of life for caregivers of infants and children with CHD are well described. Reference Golfenshtein, Hanlon, Deatrick and Medoff-Cooper8–Reference Lefton-Greif, Okelo and Wright13 Parents of children with CHD report higher levels of stress than caregivers of healthy children and children with other chronic medical conditions, Reference Hatzmann, Heymans, Ferrer-i-Carbonell, van Praag and Grootenhuis14 and lower quality of life than parents of children with other medical conditions. Reference Lawoko and Soares9 Caregivers of infants and children with CHD and dysphagia carry a double burden of stress—the stress associated with having a child with a serious medical condition, and the stress of caring for a child with dysphagia. Dysphagia has been described as the greatest stressor for parents caring for their child with CHD after surgery and discharge from hospital, and has been reported as a greater concern than cardiac-specific issues by some parents. Reference Tregay, Brown and Crowe15
Caregivers’ quality of life is affected by the demands of caregiving on physical health and psychological well-being, social isolation, financial difficulties, and family functioning. Reference Lawoko and Soares9,Reference Davis and Gavidia-Payne16–Reference Raina, O’Donnell and Rosenbaum17 The time needed to care for a child with a chronic medical condition results in physical stress for the caregiver (e.g., inadequate sleep) and impacts relationships within the family and in social relationships. Financial strain may occur because of expenses related to healthcare and difficulties retaining employment while caring full-time for a child with a chronic medical condition. Reference Lawoko and Soares9,Reference Davis and Gavidia-Payne16 Furthermore, healthcare models have changed, and healthcare professionals expect parents to take more responsibility in caring for their child with chronic medical issues at home. Reference Hatzmann, Heymans, Ferrer-i-Carbonell, van Praag and Grootenhuis14 Thus, parents’ coping strategies influence their own quality of life and their ability to fulfil caring requirements for their child.
Healthcare professionals need to assess and support parents’ coping as part of comprehensive family-centred care to ensure the best outcome for the child and family. Understanding their child’s medical condition and becoming an expert on their child has been reported as an important coping mechanism for parents of children with CHD and/or dysphagia. Reference Garro, Thurman, Kerwin and Ducette7,Reference Lumsden, Smith and Wittkowski10,Reference Sira, Desai, Sullivan and Hannon11,Reference Garro18 Other coping resources include peer-to-peer support, family, social support, spirituality, and clear communication with the healthcare professional team, and for those with dysphagia, having a plan to address their child’s feeding difficulties. Reference Garro, Thurman, Kerwin and Ducette7,Reference Garro18 Individuals use different approaches to respond to stress, and strategies for coping may be problem- or emotion-focused. Reference Dalir, Heydari, Kareshki and Manzari19 Problem-focused coping strategies include finding practical solutions, such as making changes to the physical environment, obtaining more information or researching solutions, and trialling practical options. Emotion-focused strategies involve adapting perspectives, having discussions, and building relationships. Reference Sira, Desai, Sullivan and Hannon11
In low-middle income contexts, relatively little is known about caregivers’ perceptions and experiences of the burden of care and support needs for their child with CHD and dysphagia. This information is vital to inform and improve holistic healthcare practice. Thus, this study aimed to describe the burden of care and support needs identified by parents of children with CHD and dysphagia in a single centre in South Africa.
Materials and methods
Study design
A qualitative design was used involving semi-structured interviews with parents of children with CHD and dysphagia to explore their self-identified burden of care and support needs, and their suggestions for the type of support that would be helpful for parents. Semi-structured interviews allowed the researchers to guide the discussion using main questions and probes, while also documenting additional information volunteered by participants.
Ethics approval was obtained from the University of Cape Town Faculty of Health Sciences’ Human Research Ethics Committee (HREC: 038/2019) and permission was obtained from the necessary hospital committees and departments to conduct the study. Participants provided their informed written consent prior to the interviews.
Participants and setting
Purposive sampling was used to identify potential participants from the Cardiology and Speech-Language Therapy department records at a tertiary hospital in the Western Cape, South Africa. Parents of children aged two to four years with CHD and a history of dysphagia documented before the age of 2 years were invited to participate. The children were being managed at the research site and the families were invited to participate when they attended follow-up appointments at the hospital.
Spoken and written information regarding the study was provided in the parents’ preferred language of English, Afrikaans, or isiXhosa, the predominant languages of the region. The final sample included seven participants who met the inclusion criteria and provided informed consent.
Data collection
The semi-structured interview guide included questions related to the following main themes: description of the child’s dysphagia and the impact of dysphagia on the caregiver and family; intervention provided to the child and the caregiver’s involvement in the intervention; support provided to the caregiver with regard to dysphagia; support needs that parents experienced and that may have impacted on their ability to cope with their child’s dysphagia; and recommendations by the caregiver regarding support that they would have appreciated and, therefore, suggest be included as part of family-centred care for infants and children with CHD in future.
The interview questions were translated into Afrikaans and isiXhosa by first-language speakers, followed by back translation by additional first-language speakers. Interviews were conducted in participants’ preferred languages by members of the research team, and took place at the hospital, with an average duration of 40 minutes per interview. Each participant was assigned a unique ID number to ensure anonymity, and all data were securely stored.
The audio-recorded interviews were transcribed verbatim, and where necessary translated into English for further analysis. Trustworthiness was addressed through member checking immediately post-interview by summarising the main points; written notes and consultation with the research team regarding the coding; and theoretical triangulation through consulting available literature.
Data analysis
Content analysis followed the steps described by Elo and Kyngäs Reference Elo and Kyngäs20 and Erlingsson and Brysiewicz. Reference Erlingsson and Brysiewicz21 The transcribed interviews were read multiple times so that the primary investigator was immersed in and familiar with the content. Coding was completed by identifying meaning units, condensing the meaning units, and then grouping them into codes. The codes were grouped into categories and subcategories to provide information to address the research aim.
Results
Seven caregiver participants, all mothers, were interviewed: three Afrikaans-speaking, three isiXhosa-speaking, and one English-speaking. The participants demonstrated a clear understanding of their child’s dysphagia and the intervention provided. Table 1 provides a summary of the participants’ descriptions of their child’s dysphagia, mostly related to aspiration risk and poor growth, with the associated interventions. All participants identified the speech-language therapist and dietician as the professionals providing ongoing intervention for their child’s dysphagia.
Table 1. Summary of participants
NGT = nasogastric tube; PEG = percutaneous endoscopic gastrostomy; SLT = speech-language therapist; SW = social worker.
Participants described the impact of their child’s dysphagia on themselves and their families, and the support they received. The following subcategories were identified: “worry,” “burden of care,” “emotional responses,” and “acceptance and coping.” The mothers reported that while they accepted and coped with their child’s dysphagia, they also experienced the impact of these difficulties, which resulted in worry about their child’s health, safety, and general well-being; an increased burden of care, particularly for the primary caregiver; and emotional responses.
The intervention and support participants received were described in terms of the following subcategories: “profession-specific intervention”; “access to professionals”; “information and training”; “support”; and the “caregiver as a team member.” Profession-specific intervention focused on speech-language therapy and dietetic intervention related to managing the dysphagia at home while reviewing and revising management strategies as the child’s abilities changed. Participants were able to access professionals through in-person consultations and telephonic contact. Most participants indicated that they had received professional support, and two mentioned support from family members, specifically in caring for their child’s special feeding needs. The participants received information and training about their child’s dysphagia and management and had opportunities to ask questions and receive more information. They felt part of the team and were able to contribute to decision-making regarding their child’s dysphagia.
These results are summarised in Table 2.
Table 2. Summary of findings: impact of dysphagia and support
PEG = percutaneous endoscopic gastrostomy; SLT = speech-language therapist.
Participants shared suggestions for additional support they would have liked to receive. Only one participant volunteered a suggestion—that of having a “caregiving break,” although she also said she probably would not want to be away from her child if given that opportunity. Participants were provided with suggestions for additional support options, such as support groups, individual consultation sessions, virtual support, psychological counselling, and education, information and training. All the participants who responded to this question (6/7) indicated that they would have liked a parent support group facilitated by a speech-language therapist, and ongoing individual face-to-face sessions with the speech-language therapist. Many liked the idea of a parent WhatsApp group or mobile app for messaging the speech-language therapist. However, they did not want the messaging to replace the in-person engagement, but rather as an additional option for “back-up” support.
X01: I always attend a face-to-face support group but I am happy for the WhatsApp one but I don’t want to totally rely on that. I want them to see how the child is improving. Looking at the child is not enough. I don’t have a scale at home so… maybe the child is dropping [weight]. They will see when the weight is dropping.
Another participant explained that having contact with other parents through an in-person facilitated parent support group and a WhatsApp group with other parents would have been helpful:
X02: It is something I didn’t get but if it was there I would have chosen it because I had a feeling like I was the only one having a child with this problem. If I had met other parents I would have known that there are other parents with kids with the same problem and I would have seen the way they feed their kids. When you are alone, [you are] overthinking but when you are chatting to other parents on WhatsApp you stop thinking. I would choose WhatsApp and face-to-face.
Another participant explained the benefit of being able to check in via WhatsApp when resources are limited.
E01: I would like to talk to them on WhatsApp… Sometimes I don’t have money to come here for transport… I’d like both [face-to-face and telephonic/ WhatsApp check-in].
Discussion
Worry and anxiety contribute to increased stress for caregivers, and together with the burden of care, lead to reduced quality of life for caregivers of chronically ill children. Reference Lawoko and Soares9,Reference Hatzmann, Heymans, Ferrer-i-Carbonell, van Praag and Grootenhuis14 These findings also apply to caregivers of children with CHD and dysphagia, Reference Denniss, Sholler, Costa, Winlaw and Kasparian22,Reference Enrione, Thomlison and Rubin23 and are supported by our findings in the South African context. Caring for a child with CHD and dysphagia places parents under significant stress. They care for a child with a serious medical condition, and in addition, cope with the challenges of dysphagia. It is critically important to identify ways to support caregivers, both in general and in the South African context in particular. Our findings detail the impact of dysphagia in children with CHD on caregivers, including worry, burden of care, emotional impact, and acceptance and coping.
Anxiety about their child’s weight gain and the risk of swallowing safely was a common theme. The strong link between weight gain and feeding means weight gain is often considered a measure of successful feeding. Parents consider feeding their responsibility, and inadequate weight gain can lead to feelings of incompetence. Reference Tregay, Brown and Crowe15 Weight gain is often especially emphasised for infants and children with CHD because of the need to gain weight for future surgeries. Caregivers worry about their child’s swallowing safety, which may lead them to become hypervigilant—as noted by a participant who reported having to constantly watch her child. This hypervigilance is not unique to caregivers of children with dysphagia and has also been reported as a coping mechanism for parents of children with CHD. Reference Lumsden, Smith and Wittkowski10
The constant caregiving responsibility was identified as a main contributor to the burden of care experienced by participants. A lack of help with caring for their child, and specifically for assisting with feeding, was highlighted. This burden has been noted in other studies of children with dysphagia Reference Didehbani, Kelly, Austin and Wiechmann6,Reference Hewetson and Singh24,Reference Tan, Cocks and Claessen25 and gastrostomies. Reference Enrione, Thomlison and Rubin23 Not being able to share the caregiving burden is common in the care of children with chronic illness, and the primary caregiver—typically the mother—often carries this load alone. Reference Banhara, Farinha and Bom4 In addition to the physical and emotional toll of caring for a child with chronic illness, primary caregivers’ lives are impacted by reduced work and social opportunities, and the impact on the rest of the family. Reference Banhara, Farinha and Bom4,Reference Simione, Dartley and Cooper‐Vince26
Parents of children with dysphagia experience emotions related to their child’s feeding difficulties and the associated interventions, such as tube feeding, Reference Tregay, Brown and Crowe15,Reference Pars and Soyer27 feelings of inadequacy associated with their child’s feeding difficulties, Reference Craig, Scambler and Spitz28,Reference Greer, Gulotta, Masler and Laud29 and the negative impact of the dysphagia on the family. Reference Enrione, Thomlison and Rubin23 These feelings were clearly articulated by the participants in this study, notably by one participant who gave up work to care for her child following gastrostomy tube placement. Participants also reported that others were not willing or able to feed the child or that they did not trust others to do so. The emotional impact of the child’s feeding difficulties was felt by the entire family.
The participants considered that they were able to cope with their child’s feeding difficulties and the intervention strategies they needed to implement to manage the dysphagia. This suggests they use a problem-focused approach to coping with the practical aspects of their child’s feeding difficulty Reference Sira, Desai, Sullivan and Hannon11,Reference Garro18 by implementing intervention strategies recommended by their healthcare professional. Participants reported acceptance of the current situation and hope for change in the future, indicating that they also engaged in emotion-focused coping strategies by adopting a positive outlook. Reference Banhara, Farinha and Bom4,Reference Sira, Desai, Sullivan and Hannon11 Acceptance of a child’s feeding difficulties is considered a facilitator for improved outcomes for the child. Reference Simione, Dartley and Cooper‐Vince26
Caregivers reported that intervention from healthcare professionals and easy access to those professionals contributed to their coping, along with information and training, and professional and informal support. Caregiver stress associated with dysphagia may be reduced, and outcomes improved, by having access to knowledgeable healthcare professionals and receiving intervention for dysphagia from them (with a clear feeding plan). Reference Tan, Cocks and Claessen25,Reference Simione, Dartley and Cooper‐Vince26,Reference Greer, Gulotta, Masler and Laud29 The participants in this study all reported access to the relevant healthcare professionals both in-person and by telephone, and the clinicians evaluated the child’s progress and intervention at every visit, fostering feelings of progress. The participants also felt part of the decision-making team and comfortable asking questions, essential aspects for optimising the care for children with dysphagia. Having a clear understanding of the child’s medical condition and the interventions provided has been identified as a coping strategy for parents of chronically ill children, reducing caregiver stress. Reference Sira, Desai, Sullivan and Hannon11,Reference Garro18
The participants in our study received information and training regarding dysphagia and intervention strategies from their treating healthcare professionals. Nonetheless, the use of additional resources, such as videos that caregivers can watch again at home and share with other family members as suggested by Neille and Selikson, Reference Neille and Selikson30 may enhance caregiver support in the future. Pars and Soyer Reference Pars and Soyer27 demonstrated a reduction in caregiver stress after completing a training programme for home gastrostomy feeding before discharge from hospital.
Support from family and social networks benefits caregivers and can reduce their feelings of stress and isolation. Reference Lumsden, Smith and Wittkowski10,Reference Sira, Desai, Sullivan and Hannon11,Reference Simione, Dartley and Cooper‐Vince26,Reference Neille and Selikson30 These aspects seemed limited in our participants’ experience, with only two reporting support from close family members (husband and mother, respectively). This was surprising given that family and community support are generally considered integral to child-rearing in the (South) African context. Reference Mokhutso31
Linking with parents of children with the same difficulties as a form of peer-to-peer support has been reported as beneficial in studies of caregivers of children with CHD and caregivers of children with dysphagia. Reference Banhara, Farinha and Bom4,Reference Sira, Desai, Sullivan and Hannon11,Reference Garro18,Reference Denniss, Sholler, Costa, Winlaw and Kasparian22,Reference Tan, Cocks and Claessen25,Reference Simione, Dartley and Cooper‐Vince26 When asked about additional support that they would have liked, our participants reported that they would have valued a facilitated parent support group where they could share their experiences with other caregivers facing similar difficulties. Current research and feedback from participants suggest that this intervention should be implemented as standard of care. The participants considered that access to healthcare professionals and other parents via a mobile format, such as WhatsApp, would be “nice to have.” They did not want this support to replace the face-to-face consultations with professionals, but felt it would be an additional valuable support. In-person consultations with healthcare professionals were seen as reassuring and beneficial, despite the cost to attend such sessions—a relevant point to note in low-middle income settings.
WhatsApp groups or other forms of social media and messaging hold great potential for facilitating communication between healthcare professionals and parents. However, speech-language therapists and dieticians already face heavy workloads and may struggle to be available at all times in these forums. It would be important, if such approaches are adopted, to ensure that clear boundaries and expectations exist for all parties. Ultimately healthcare professionals may encourage more experienced parents to drive such initiatives and support newer members of the group, stepping back to facilitate peer-to-peer support and only getting involved when specifically called upon.
This is the first study to explore caregiver perceptions, challenges, and experiences in caring for children with dysphagia and CHD in the South African context. Although many of the findings are similar to those of other studies that have described the impact of dysphagia on caregivers and families, the insights gained from our sample are important for understanding caregiver needs of a specific population in a particular setting, and for service planning and development. At the same time, the study was limited by the small sample of participants at one hospital in South Africa, and thus, generalisation of the findings to caregivers in other settings should be made with caution.
Conclusion
The participants in this study provided their perspectives on the impact of their child’s dysphagia, the support they received, and additional support that they felt would have been helpful. Results were similar to previous reports in different settings. Caring for a child with CHD and dysphagia has a great impact on families. The mothers in this study described their experiences of worry, emotional responses, acceptance and coping, and their considerable burden of care. Alongside these challenges, they felt well-supported and included by the healthcare team and that they had sufficient access to healthcare professionals. Caregivers appreciated face-to-face consultations with healthcare professionals but also highlighted the potential value of a parent peer-support group and app-based messaging groups to help reduce stress and improve caregiver coping skills and quality of life.
Acknowledgements
We thank Michelle Pascoe, PhD, for editing a draft of this manuscript.
Financial support
None.
Competing interests
None.
Ethical standards
The authors assert that all procedures contributing to this work comply with the ethical standards of the Helsinki Declaration, as revised in 2013. Ethics approval was obtained from the University of Cape Town Faculty of Health Sciences’ Human Research Ethics Committee (HREC: 038/2019) and permission was obtained from the necessary hospital committees and departments to conduct the study.
Open access
