Each year in the United States, roughly 40,000 children are born with CHD and approximately one-third of those children will eventually undergo corrective surgery. Reference Hill, Tey and Jung1 While children and their caregivers experience many challenges after congenital heart surgery, feeding difficulties are exceptionally common. Reference Kogon, Ramaswamy and Todd2 Feeding difficulties are often multifactorial and may be related to the sequelae of CHD, surgical complications, effects of prolonged hospitalisation, associated comorbidities, or many other factors. Reference Brown, Ridout and Pagel3 Roughly half of infants who undergo heart surgery in the first month of life will require alternative enteral feeding strategies at the time of their hospital discharge to achieve adequate nutrition and growth goals. Reference Hill, Tey and Jung1,Reference Kogon, Ramaswamy and Todd2,Reference Sables-Baus, Kaufman and Cook4–Reference Medoff-Cooper and Irving6 Unsurprisingly, feeding difficulties have often been identified by families as the leading cause of non-cardiac morbidity in the early post-operative period and a significant source of caregiver stress. Reference Hartman and Medoff-Cooper7–Reference Wray, Ridout and Jones9 Parents have described feeding a medically complex child after heart surgery to be a time-consuming and anxiety-inducing endeavour. Reference Tregay, Brown and Crowe8–Reference Medoff-Cooper, Naim and Torowicz10 Providing adequate education and support for caregivers is one avenue to not only improve post-operative nutrition and growth of the child but also mitigate parental stress. Reference Medoff-Cooper, Naim and Torowicz10
While several studies Reference Hartman and Medoff-Cooper7,Reference Wray, Ridout and Jones9,Reference Woolf-King, Arnold and Weiss11 have sought to describe the overall experience of caregivers after hospital discharge, few have been dedicated to the specific topic of managing feeding difficulties. As such, insight into the magnitude of the impact that feeding challenges can have on a caregiver’s well-being is lacking. Reference Hill, Tey and Jung1,Reference Hartman and Medoff-Cooper7,Reference Wray, Ridout and Jones9 Further investigation into this unique experience could inform strategies to help these families cope with and overcome the challenges associated with feeding a child after heart surgery and possibly mitigate long-term detrimental outcomes (e.g., feeding tube dependence). Reference Tregay, Brown and Crowe8,Reference Wray, Ridout and Jones9 Perspectives gained through this study will serve as the first stage of a larger study intended to develop and pilot test a specific intervention strategy for families managing feeding difficulties after heart surgery.
Specific Aims:
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1. What is the impact (physical/emotional/financial) of caring for a child with feeding difficulties?
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2. What barriers are faced (personal/system-based) when managing the child’s feeding difficulties?
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3. What do caregivers identify as beneficial support mechanisms within the healthcare system and beyond?
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4. What is the ideal healthcare delivery system from the caregiver’s perspective?
Materials and methods
Study design
This mixed-methods study combined a phenomenological qualitative method via caregiver interviews with qualitative survey responses. Through semi-structured interviews, researchers explored predefined topics while allowing the caregiver to elaborate and generate ideas throughout the discussion. All interviews were conducted via telephone to reduce the burden of time and travel on the caregiver and to allow equal access to participants residing far from our institution. Caregivers were interviewed within four months of hospital discharge following congenital heart surgery. At the time of the interview, caregivers completed the Feeding/Swallowing Impact Survey, a validated instrument that measures the impact of feeding/swallowing disorders on the caregiver’s health-related quality of life. Reference Lefton-Greif, Okelo and Wright12
Participant recruitment
Purposive sampling recruited caregivers of children treated at a tertiary care children’s hospital. Eligible participants were selected from the institution’s cardiothoracic surgery patient discharge log. Inclusion criteria included: primary caregiver of a child ≤ 18 years of age who underwent congenital heart surgery, was discharged home with alternative enteral feeding access (nasogastric, nasojejunal, or gastrostomy tube) between April and October 2022, and who continued to have alternative feeding access at the time of study enrolment. Eligible participants were contacted by phone by the trained research coordinator (SM) within 4 months of hospital discharge and invited to participate. Participant enrolment occurred from May to December 2022. At the time of initial contact, the research coordinator discussed the study’s specific aims and the voluntary nature of participation, and informed consent was obtained verbally.
Data collection
Socio-demographic data were obtained through review of the electronic health record and/or caregiver self-reporting. Caregiver socio-demographics included caregiver role, preferred language, and distance from residence to the tertiary care hospital. Children’s demographics included age and method of feeding at time of discharge, insurance status, parent-reported race, and medical comorbidities.
Interviews were conducted by one of two female researchers (EW & CP) trained in qualitative research and interview techniques. Interviewers were uninvolved in the patient’s medical care to reduce researcher bias and encourage caregiver candour. Caregivers requiring language translation services were interviewed by a professional translator. Prior to beginning the interview, caregivers were reminded of the study aims, verbal consent for an audio-recorded interview was confirmed and the interviewers administered the Feeding/Swallowing Impact Survey. Interview duration was <60 minutes. Interviewers used a semi-structured interview guide (Supplementary Figure S1) developed by Nikhila Raol that underwent pilot testing in simulated interviews and subsequent refinement throughout the study. Interviewers recorded field notes during and after interviews. Audio recordings of the interviews were transcribed verbatim using Descript, a professional transcription software (Descript, Inc. Version 52.1.0, 2022). Auto-generated transcripts were manually compared to the audio files, edited for textual accuracy, and anonymized through the removal of patient identifiers. Participant enrolment concluded upon achievement of thematic saturation, defined by the point at which new interviews failed to generate novel codes or information and future interviews would be unlikely to yield new themes. Reference Hennink and Kaiser13
Analysis
Qualitative data analysis was performed using a hybrid of inductive and deductive methods to honour the study’s specific aims while allowing for a broad exploration of topics. Interview transcripts were coded and queried using NVivo, a software designed to facilitate the management and analysis of qualitative data (QRS NVivo Version 12, 2019). Using consensus coding, an initial sample of three interviews was inductively coded by three separate analysts who worked independently (EW, CP, SM). Each individual coder developed their own unique codes and codebook. After a rigorous team review of the three codebooks, it was determined there was strong inter-coder consistency across the codebooks. Despite minor differences in code nomenclature, all three codebooks had similar patterns and overarching themes. A composite codebook was created by EW and approved by the team. The three initial interviews underwent consensus coding again, with deductive coding done individually by one of two analysts (EW or CP) using the composite codebook. The coding was compared using Nvivo Coding Comparison Queries, in which the percentage agreement of the codes between the two coders ranged from 80.0–100%. This demonstrated strong inter-coder agreement. Of the remaining interviews, four randomly selected interviews underwent consensus coding by two separate analysts, and their codes were again queried in Nvivo to ensure continued concordance between the analysts. The remainder of the interviews underwent split coding by a single coder, which was reviewed by other authors to ensure the coding stayed true to the codebook. The codebook was a dynamic document that was updated and refined to accommodate additional codes and themes identified in successive interviews. The team frequently returned to the transcripts for content familiarisation. At adjudication meetings that occurred at various time points throughout the project, transcript coding and thematic analysis were reviewed by the entire research team and colleagues outside the project to confirm consistency and check biases. Any discrepancies were discussed by the team and adjudicated by NR. Quantitative analysis of survey responses was performed through Nvivo queries and Microsoft Excel (version 16.71).
Results
Descriptive
In total, 22 eligible families were contacted for study enrolment, of which 21 families agreed to enrol in the study. Of the 21 families enrolled, 15 families were successfully interviewed. Three families could not be reached after consenting, two families’ children no longer had feeding difficulties at the time of interview, and one family’s child expired prior to the scheduled interview. Of the 15 interviews, two were conducted with mother-father dyads and 13 were with the mother alone, for a total of 17 caregivers interviewed. The families were socio-demographically diverse (Table 1). The average age of the child at the time of discharge was 3.5 months (range = 0.75–8 months). Interviews were conducted an average of 66 days after hospital discharge (range = 36–136 days).
Table 1. Caregiver and child demographic data.
GERD=gastroesophageal reflux disease; NG=nasogastric; NJ=nasojejunal.
Δchild may have more than one condition.
+e.g., laryngomalacia and subglottic stenosis.
*e.g., pulmonary hypertension and chronic lung disease.
Part I: qualitative
The data are presented in four broad categories, with corresponding themes that emerged from the data (Fig. 1). These include (1) psychosocial impact on caregivers; (2) barriers to care; (3) support mechanisms for caregivers; and (4) change proposals for ideal health care delivery. Major themes, subthemes, codes, and representative quotations for each category are presented in Table 2. Themes are further discussed below.
Figure 1. Major themes, subthemes, and change proposals that emerged from the interviews.
Table 2. Major themes of interview content.
Psychosocial impact on caregivers
A major theme that emerged from the discussions was the emotional toll experienced by caregivers. Caregivers shared a multitude of emotions (Table 2), but most reported feeling overwhelmed and worried. Parents often felt overwhelmed by the demands of caring for their child, noting sleep deprivation and a time-intensive feeding schedule as common contributing factors. Additionally, most caregivers described feeling regularly overcome with worry. These worries most frequently included the current and future health of their child, the adequacy with which they were managing their child’s feeding difficulties, and an overall feeling of uncertainty. In reference to the emotional distress they experienced, caregivers frequently desired increased mental health support and resources from their child’s healthcare team.
Though caregivers had many concerns about their child’s overall care, feeding difficulties were frequently cited as the most challenging aspect of care. Feeding tube specific concerns, including learning how to manage and replace a feeding tube at home, were common themes. Other common themes included fears that their child was not receiving adequate nutrition, breathing concerns while feeding, loss of feeding skills, development of oral aversion, and a desire for their child to feed like a “normal” baby.
In many cases, the impact of feeding difficulties affected not only the caregivers but the entire family. When caregivers had other children at home, they reported difficulty managing their child’s feeding problems while also tending to the siblings. Protective factors when caring for multiple children at home included having a partner or extended family to assist in the care of other children.
Many caregivers commented that the demands of their child’s time-intensive feeding schedule necessitated extended time away from work with consequent financial strain. While some families were able to share childcare with nearby extended families, others struggled to find childcare that could accommodate their child’s complex needs.
Barriers to care
Caregivers experienced many barriers when managing their child’s feeding, both at a personal level and at the level of the healthcare system (Table 2). While most parents expressed appreciation for the healthcare providers that taught them how to manage their child’s feeding issues, many still felt apprehensive about their level of education in the early period after hospital discharge.
Some parents noted feeling a disconnect with their child’s providers, feeling as if they were not on the same page about their child’s care. At times, this interfered with getting their child appointments with specialists. Other times, parents were left wanting more from their providers.
Barriers to care exist at the level of the healthcare system as well. Some caregivers noted issues with insurance covering specific providers or essential feeding equipment, all of which interfered with providing the best care for their child. Numerous parents expressed frustration with the medical supply companies, recounting frequent struggles to get the correct supplies at the correct time. Another common sentiment was the lack of specialists located near the family’s residence. Multiple families reported travelling more than an hour to get their children to their various weekly appointments.
Support mechanisms
When describing the emotional impact and complex care requirements of their children, caregivers commonly identified various support mechanisms that were essential to their success (Table 2). These mechanisms fall into three general types: community support; support from healthcare providers; and supporting oneself through coping mechanisms. One common remark was that caring for a medically complex child “takes a village” that requires support from families, communities, and parent-support groups. Many caregivers also expressed gratitude for their healthcare providers who offered medical advice, guidance, care coordination, and emotional support. Finally, caregivers shared their personal methods of coping and how they learned to care for themselves during a stressful time. Common coping mechanisms included journaling, professional counselling, prayer, and finding comfort in knowledge through education about their child’s illness.
Change proposals for ideal healthcare delivery
Caregivers provided many ideas to improve their experience of managing their child’s feeding difficulties. Proposals addressed three key areas for improvement: easing their transition home, combatting caregiver distress, and improving the tube weaning process (Fig. 1).
Part II: qualitative
The Feeding/Swallowing Impact Survey scores were collected from 14 of the 15 interviews; the survey was not completed at the time of one interview in error and subsequent attempts to reach the caregiver were unsuccessful. The caregivers’ subsection and total scores were dichotomised to two groups, low (n = 7) or high (n = 7), whether the score was less than or greater than the median score.
Select demographic variables were associated with a higher total survey score (Fig. 2). Caregivers more likely to be in the high score group included those whose children were discharged at age <2 months or with a nasogastric tube. The caregiver’s preferred language, distance from hospital, or insurance type did not appear to influence score group distribution.
Figure 2. Comparison of caregiver Feeding/Swallowing Impact Survey (FS-IS) score groups (high or low) to specific variables. Top: Caregiver total score distribution per child demographic variables. Bottom left: Comparison of total Feeding/Swallowing Impact Survey score to frequency of codes in interview transcripts. Bottom right: Comparison of Feeding/Swallowing Impact Survey subsection score to frequency of codes in interview transcripts.
The frequency of specific codes used during an interview was compared to the associated total survey score (Fig. 2). Codes that were associated with a low total survey score included access to community and familial support, care coordination, parent-support groups, and speech therapy. The low score group had fewer codes associated with negative emotions (e.g., fearful, helpless) and more codes associated with positive emotions (e.g., hopeful, managing well).
The frequency of codes used during an interview was then compared to the Feeding/Swallowing Impact Survey subsection section score to assess for concordance. For the survey subsection that assesses “carrying out daily activities,” codes that related to strain on their familial, job-related, and financial responsibilities were seen more frequently in the high subsection score group. For the subsection that assessed “problems worrying,” the high and low score groups had a similar number of codes related to caregiver worry and anxiety. Finally, for the subsection that assesses “problems feeding my child,” the two score groups had a similar number of codes that related to caregiver education.
Discussion
This mixed-methods study aimed to further elucidate the caregiver experience of managing a child’s feeding difficulties after heart surgery. Consistent with previous studies, Reference Hartman and Medoff-Cooper7–Reference Wray, Ridout and Jones9 the parents in this study regularly reported that managing their child’s feeding was one of the most arduous aspects of their child’s care. Specifically, these caregivers shared important insights regarding the psychosocial impacts, barriers to care, and crucial support mechanisms.
Caregivers in this study emphasised the psychosocial impact of managing their child’s feeding difficulties. The emotional toll of feeling constantly worried, uncertain, and sleep-deprived was a common theme in this group of caregivers. Parents of children with CHD are at an increased risk for developing mental health problems, especially in the immediate post-operative period. Reference Woolf-King, Anger and Arnold14 Many parents in this study expressed a desire for improved access to mental health support to cope with the emotional stress. Woolf-King et al. reported that parents and providers felt that integration of mental health services into the child’s cardiac care would be a valuable tool to support both children and parents. Reference Woolf-King, Arnold and Weiss11 Our caregivers offered further suggestions to reduce the physical and emotional stress. They advocated for better access to home health aides and respite care, both of which are unmet needs identified by many families of children with special health care requirements. Reference Kuo, Cohen and Agrawal15 Increasing access to such resources would benefit these caregivers who work tirelessly to support their children.
Identifying those caregivers who are at highest risk for negative mental health effects could help healthcare providers recognise when to offer supplemental resources. Survey tools such as the Feeding/Swallowing Impact Survey are a quick and simple method to identify such caregivers. This study found that caregivers who took home a child younger than two months or a child with a nasogastric tube had higher Feeding/Swallowing Impact Survey scores, suggesting that these caregivers' health-related quality of life was impacted to a greater degree. While all caregivers in this sample struggled with worry, regardless of their Feeding/Swallowing Impact Survey score, those with higher scores utilised and desired professional mental health resources at a higher rate than those with low scores. This suggests that this specific survey may assist in risk-stratifying caregivers, but further investigation into a more comprehensive screening tool that identifies those in need of additional resources would be valuable.
Because feeding difficulties are one the greatest sources of stress for caregivers of children with CHD, Reference Hartman and Medoff-Cooper7–Reference Wray, Ridout and Jones9 ensuring that parents are equipped to manage their child’s feeding at home is essential. Parents in this study often felt apprehensive about feeding their children in the early period after hospital discharge. They expressed a desire for more in-hospital education to ease their transition to home. The greatest areas of uncertainty involved the process of replacing the feeding tube, handling urgent feeding questions, and best practices to advance the feeding skills of their child. Those parents who recounted robust education from providers prior to hospital discharge felt the most comfortable with feeding once home, but many still experienced some anxiety early on. Previous studies report similar findings, with parents feeling universal discomfort with feeding tubes at home, despite skills training during hospital admission. Reference Hartman and Medoff-Cooper7,Reference March16 Creating stronger skills training for parents while their child is in the hospital would be a worthwhile venture.
Augmenting parental education was one of many change proposals suggested by this group of caregivers. Several proposals addressed logistical improvements, such as increased portability of feeding equipment and increased access to care for those living far from the tertiary care hospital. Healthcare providers may consider utilising Telehealth strategies for on-demand access to educational resources or live chats with healthcare providers. Such strategies have been shown to not only reduce parental anxiety and depression Reference Zhang, Lei and Liu17 but also improve parental care ability and nutritional status of the child after hospital discharge following congenital heart surgery. Reference Zhang, Lei and Liu18
Satisfactory nutrition and growth are enduring issues for many children with CHD. Children < 2 years old with CHD are at an increased risk of acute and chronic malnutrition. Reference Toole, Toole and Kyle19 Maurer et al. found that 22% of children who underwent neonatal congenital heart surgery met criteria for a feeding disorder at 2 years of age. Reference Maurer, Latal and Geissmann20 Many of our caregivers feared that their child would develop long-term dependence on a feeding tube. Oftentimes, these parents reported that the lack of a concrete plan for tube weaning after discharge contributed to this fear. Slater and colleagues reported that when parents are given early tube weaning goals and education, they had lower levels of anxiety. Reference Slater, Spader and Fridgen21 Development of tube weaning programmes involving a multidisciplinary approach with early intervention from feeding therapists is recommended to accomplish safe and swift feeding tube removal. Reference Slater, Spader and Fridgen21 Moreover, standardised nutritional programmes with outpatient surveillance and interventions have been shown to improve growth patterns in CHD infants to resemble growth of healthy infants. Reference Medoff-Cooper and Ravishankar22 Offering parents strong nutritional programmes and a plan for tube removal after discharge could help alleviate the stress of uncertainty on caregivers while improving the child’s nutritional outcome.
There are several limitations of this study to consider when interpreting the findings. All participants were selected from a single academic institution that utilises a multidisciplinary approach to feeding difficulties, limiting the generalizability of the average caregiver experience across institutions. Caregivers were interviewed soon after hospital discharge, so their concerns, anxieties, and barriers may change once they are further from hospital discharge. All but two interviews were conducted with only the mother present, which may limit the breadth of perspectives obtained. While this sample was demographically diverse, further investigation into the experience of fathers and parents with different geographics, cultural backgrounds, and family structures is important. Caregivers included in this study may have self-selected as caregivers possessing the emotional bandwidth to share their experience, thus limiting the breadth of experiences obtained. Though caregiver candour was encouraged, some caregivers may have been hesitant to admit the severity of the impact. As such, this sample could underestimate the severity of the impact felt by all caregivers. Within this type of qualitative research, the process of coding and thematic analysis is susceptible to subjectivity. However, every effort was made by the entire research team to reduce subjectivity of individual team members. This sample was relatively small but was consistent with a systematic review demonstrating that thematic saturation is often obtained after 9–17 interviews. Reference Hennink and Kaiser13
Conclusions
This investigation of the caregiver experience offers valuable insights into the specific psychosocial challenges faced by this group and provides actionable ideas for improved provision of care. These caregivers reported that managing a child’s feeding difficulties after heart surgery can be a challenging and overwhelming task that requires significant dedication of time, patience, emotional resilience, and support from one’s community and healthcare team. The knowledge gleaned from the accounts of these caregivers can be used to advance the family-centred, multidisciplinary approach to feeding difficulties after heart surgery that minimises caregiver burden. While this study focuses on a paediatric cardiology patient population, many of the findings may be applicable to caregivers managing feeding difficulties in other patient populations. Future directions for this study include developing and pilot testing a single-centre, multidisciplinary management intervention for post-congenital heart surgery feeding difficulties. Outcome measures will include assessing feasibility and fidelity of the intervention, caregiver survey scores, and healthcare utilisation.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S104795112300361X.
Acknowledgements
The authors thank Jane Lowers, PhD, MPA for her mentorship. We express sincere gratitude to the caregivers who generously shared their experiences and the dedicated healthcare providers caring for these families.
Financial support
This work did not receive any specific grants from any funding agency, commercial, or not-for-profit sector.
Competing interests
None.
Ethical standard
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national guidelines on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008, and has been approved by Children’s Healthcare of Atlanta’s Institutional Review Board.
