In the neonatal intensive care unit (NICU), some infants are unable to feed orally and therefore require enteral nutrition administered via a feeding tube. Contributing factors include prematurity, airway difficulties, postoperative recovery, perinatal neurological disorders, severe gastroesophageal reflux disease, genetic conditions, and craniofacial malformations such as cleft palate.1 For medically stable infants who are ready for discharge, alternative methods of home enteral nutrition, such as nasogastric tube (NGT) or gastrostomy tube (GT) feedings, can assist with an earlier transition to home. When appropriately selected and closely monitored, NGT and GT feedings can provide early, consistent, and sufficient nutrition to promote positive long-term neurological outcomes.2Research on patient narratives has experienced significant growth in recent decades. These accounts provide valuable insights into the subjective aspects of health care, which are crucial for understanding the patient experience. They contribute to the advancement of patient-centered care, the development of patient-reported experience measures, and the empowerment of patients and caregivers. Moreover, they enhance communication in clinical settings and support medical education. Ultimately, patient narratives offer a deeper understanding of health, illness, and care from the patient’s perspective.3Digital patient narratives, often framed within the practice of digital storytelling, can be defined in various ways. Fundamentally, digital storytelling involves the creation of brief digital media pieces, typically developed with the guidance of trained facilitators in a supportive, technology-enabled setting.4 It also provides an inclusive way of engaging patients in research, valuing their lived experiences, and fostering collaborations with other patients, community groups, and health care professionals.5 It serves as a means of fostering deeper emotional and empathetic engagement between practitioners and their clinical practice.This article aims to inform health care professionals about parents’ perspectives on home tube feedings through a literature review and a recorded interview with a mother of a preterm infant who was discharged home with NGT feedings and then transitioned to GT feedings 2 months later. We acknowledge that this infant’s clinical course, including the eventual need for a GT, is not representative of all patients who transition home with NGT feedings, and this mother’s view may not reflect the experiences of all families. Nevertheless, we hope that sharing this mother’s experience will encourage clinicians to develop a deeper emotional understanding and foster empathetic engagement with families of NICU patients, assist parents during decision-making discussions, and provide emotional support to caregivers facing similar decisions.In our digital narrative, we elected to frame the discussion into several sections including the decision-making process, in-hospital training, real-life experiences, and recommendations to future parents and health care professionals.For parents in the NICU, the decision-making process around starting home tube feeding for their infant can be challenging. Before deciding to take an infant home with NGT feedings or undergo a GT procedure, caregivers may have conflicting feelings about providing nonoral nutrition at home. Some caregivers express worry and are frightened because of the unfamiliarity of placing and using a tube for feeding.6 Other caregivers or family members report a lack of information about the consequences of NGT feeding in everyday life or feel uninformed about the GT procedure itself.7Several studies have evaluated the impact of home tube feeding in infants, providing information that may help families make informed decisions. Some studies have found that discharging infants home on NGT feedings decreased hospital days.8,9 In one study of 57 infants discharged home with NGT feedings, the authors reported that only 3 visits to the emergency department were needed because of incorrect placement of the NGT.8 Although the decision can be challenging initially, most parents report that the GT experience is ultimately positive.10 In a survey of 20 parents of children aged 0 to 8 years with epidermolysis bullosa, more than half reported that they wished the procedure had been done earlier.10To make the decision-making process easier for caregivers, it is essential to provide adequate support, share experiences of other caregivers, and offer education about potential problems. Including parents as active members of the care team during the entire process can empower families and contribute to a successful transition to home tube feeding.11 Before discharge, thorough training is important, along with making sure that families are aware of the support available to them postdischarge.9 Caregivers want not only adequate medical information but also practical guidance to help them decide about GT placement.7,12,13 Some caregivers noted that their hands-on training with GT equipment increased their confidence in making the decision about GT placement for their child.9,12 Parents participating in focus groups about the decision-making process expressed that they valued being educated about the alternatives, consequences, and long-term goals.7For families considering the transition from home NGT to home GT feedings, Abdelhadi et al proposed a standardized decision-making algorithm for transitions to guide this process.14 This algorithm considers the parent’s perspective, the child’s clinical issues, concurrent conditions, and available community resources.14 The authors concluded that although the transition from NGT to GT placement is ultimately the parents’ decision, clinician guidance is critical in that process.14 Shared decision-making is achieved by providing accurate, consistent, and timely information while actively seeking and supporting parental needs and choices.In our first parent narrative (Video 1), a mother shares her perspective about home tube feeding and her experience with the health care team. Before discharge from the NICU, the family had a choice: remain in the hospital until their child gained appropriate weight or receive training to manage a NGT at home and be discharged sooner. They opted for NGT training to allow for an earlier discharge and to avoid the more invasive GT procedure. However, after 2 months at home, the family found the NGT to be “unsustainable” because of their child’s insufficient weight gain, frequent accidental removal of the tube, and complications related to reflux.Before deciding on the GT procedure, the family was unsure what they should do. They met virtually with the general surgery team to explore their options. After this consultation, they had a better understanding about the GT procedure itself but had concerns about the effects of surgery and the potential challenge of coming off the ventilator after the procedure because their son had bronchopulmonary dysplasia. The mother described the turning point in their decision: seeing their child lose weight despite NGT feedings. As a result, they concluded that a GT was the best option for their child to gain weight.Before discharge, parents of infants with a plan for home NGT or GT feedings need to be trained on how to provide feedings. It is important that multiple caregivers be trained to reduce the burden on one caregiver.15 Inadequate training, limited resources, or insufficient support can compromise the safety of tube feeding at home and leave families feeling anxious and lacking confidence.15,16 Breik et al recommend that hospitals focus on training caregivers how to safely manage equipment and be responsive to the body language of their child.15 Parents should be taught how to promote family-inclusive mealtimes that focus on social interaction and prepare their child for oral feeding.15 For in-hospital GT training, parents expressed that demonstrations with the equipment and practicing with their child while being supervised by a health care professional were useful.16 Additionally, families noted that videos and simulation practice could be helpful but only as an addition to face-to-face training with a professional.16In our second parent narrative (Video 2), the mother shares her experience during training with the NGT and the transition to the GT. During NGT training, she explains that her biggest concern was her fear of hurting her child. She and her husband felt that they had to set aside their own feelings and the reactions of their child to provide him with the necessary nutrition. After discharge with the NGT, they found managing their child’s NGT at home was particularly challenging because of frequent reinsertions, trying to create a comfortable environment for their child, and difficulty in practicing tummy time. The mother described the transition to the GT as much easier than the NGT because the tube was out of their child’s sight and he seemed to feel more comfortable.Several studies have interviewed or surveyed parents about their real-life experiences with home tube feeding. In a study of 119 preterm infants discharged on NGT feedings, parental satisfaction was found to be high and parental stress levels were low when infants achieved adequate weight gain.17 Parents appreciate NGT feedings as a means for an earlier discharge home and avoiding surgery.8 When using the GT, caregivers saw an improvement in weight gain for their child, which reinforced continued use of the GT.6 Additionally, the GT had a positive impact on medication administration, preventing dehydration, and reducing feeding times.18 Some parents felt the GT improved their relationship with their child because it reduced the frustration associated with oral feeding.19 Similarly, caregivers reported that mealtimes were easier and more enjoyable for both themselves and their child after GT placement.10However, parents may find it challenging to parent a child who is tube-fed as the process can be stressful and emotionally draining.11 Some parents experience family and social burdens, including receiving suboptimal support from relatives and societal judgment in public.6 Parents of infants with home NGT feedings reported a lack of clarity about who would follow-up on tube-feeding issues after discharge.7 They also described the social impact of NGT feedings, such as being excluded from family gatherings because of the possibility of infant vomiting or being unable to find a babysitter.7 In a cohort study of 425 children, more than half of the parents reported that their child experienced regular episodes of gagging and retching, and half reported their child had frequent vomiting, nervous perspiration during feedings, and skin irritations, regardless of the type of feeding tube.20 Some caregivers expressed that GT placement felt like an additional disability that made their child more dependent on medical support.21 Some parents also viewed a GT as a permanent intervention that limited their child’s potential for improvement in their health, carried a social stigma, and reduced the nurturing experience of feeding because of the medicalization of the process.21 Furthermore, some caregivers felt the GT imposed restrictions on their mobility and made it more difficult to find respite care.19Although malpositioning during NGT replacement has been cited as a potential risk of home NG feeding,22 one study found that infants discharged with an NGT were less likely than those with a GT to experience tube-related admissions or emergency department visits23 while another study found the tube-related risks comparable.9In our third parent narrative (Video 3), the mother explains her experiences with her child’s GT. At first, she and her partner felt unfamiliar with the equipment, but after 2 to 3 weeks, they started to feel more comfortable accessing the GT. This comfort came with the consistent repetition of using the GT. However, the family also experienced complications with the GT, including an infection, drainage, and a granuloma around the tube. Another challenge was finding clothing that allowed for easy access to the tube, which was resolved when they found clothing specifically for infants with a GT or used clothing that snaps at the bottom.In this third parent narrative, the mother mentions some of the positive aspects of the GT procedure. Overall, she expressed that the GT is more convenient. When their child had an NGT, they had to transport more supplies such as tape, a swaddle, backup NG tube, and lubricant. Now, with the GT, they just carry a backup tube. The mother also shared that reinsertion of the GT was easier than the NGT, especially when going out to restaurants.In our fourth parent narrative (Video 4), the mother shows what mealtimes with her child look like using gravity feeding.Caregivers have provided many recommendations for future parents about navigating home NGT and GT feedings, as well as for health care professionals to better support families. Parents recommend that caregivers have specific, detailed discussions with their hospital care team about NGT and GT management before making the home plan, focusing on prognosis and short- and long-term consequences.7,12 Parents also highlight the need for social support.7 Many parents whose children require a GT want to meet with other parents who have experienced the same procedure.6,12,13 Similarly, parents of infants on home NGT feedings benefit from support groups.1The parental views in these studies are similar to the mother’s descriptions in Video 5. In this video, the mother shares that she is in a pediatric therapy group in which multiple other children have a GT. She describes how it gives her a positive outlook, seeing other children thrive; she feels like her child is not alone or different from others. Additionally, the group has helped her learn from other parents’ experiences, and she has received practical suggestions such as which clothes and ointments to use.Health care professionals should maintain open communication to discuss potential issues and themes relevant to the child, parent, and family experience and share strategies for managing these challenges.1,19 Ongoing follow-up is strongly recommended to optimize nutrition and ongoing tube management.20In Video 5, the mother provides suggestions for parents facing similar decisions and for health care professionals holding these discussions. She recommends that parents read or join online forums to learn from others who have had similar experiences. During her own decision-making process, she wished she could have met with a parent whose child had undergone the GT procedure.For health care professionals, she wished they had provided more community resources, rather than simply being told that the GT would be the better option. She also remembers the entire health care team introducing themselves and providing consistent updates during her son’s procedure; she felt very cared for and really trusted the health care team.Although NGT and GT feedings can improve nutrition and health outcomes, it can also disrupt family routines, carry social stigma, and create a stressful environment for parents. However, over time, many families learn to adapt and later report that these alternative feeding options were a positive experience for their family.The literature emphasizes the importance of patient narratives because they can provide health care professionals with a better understanding of patient perspectives and help them better support their patients. Making patients’ stories publicly available can endorse culture changes, reduce power and knowledge asymmetries, and foster more personalized health care.3 Ultimately, supporting families requires not only informing them about medical interventions, but also acknowledging parents’ experiences and preferences to foster shared decision-making and family-centered care in the NICU.American Board of Pediatrics Neonatal-Perinatal Content SpecificationKnow the indications, management, and complications of medical technology (eg, central lines, gastrostomy, tracheostomy, ostomy, ventriculoperitoneal shunt, and extracorporeal membrane oxygenation).Understand advocacy needs for the unmet health care needs of the maternal-infant dyad.We wish to acknowledge and express our gratitude to the mother in the videos for generously sharing her experience. We hope these valuable insights will inform and support other clinicians and families in similar situations.
Hesher et al. (2026) studied this question.