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Paediatric tube-feeding: An agenda for care improvement and research

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Nick Hopwood discusses a means to improve the care and wellbeing of children with paediatric feeding disorder who require tube feeding (PFD-T).

Image courtesy of interviewee. October 10, 2024

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Nick Hopwood discusses a means to improve the care and wellbeing of children with paediatric feeding disorder who require tube feeding (PFD-T).

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Here are five key points from the video discussing pediatric feeding disorders and the challenges related to tube feeding:

1. **Definition and Recognition**: Pediatric feeding disorder (PFD) is defined as impaired oral intake that is not age-appropriate, often leading to insufficient nutrition or hydration in children under five. This condition gained official recognition with the CDC's approval of a standalone diagnostic code in 2021, marking a significant milestone in acknowledging the complexities of feeding difficulties in children.

2. **Importance of Family-Centered Care**: The management of pediatric feeding disorders, especially for those requiring tube feeding (PFDT), should focus not only on the child's nutritional needs but also consider the emotional, social, and logistical impacts on the whole family. Understanding family dynamics and ensuring that all caregivers are trained to assist with feeding can help alleviate the burdens on families.

3. **Multidisciplinary Approach**: Collaboration within a multidisciplinary team, including pediatrics, speech therapy, occupational therapy, and dietetics, is crucial for developing effective treatment plans for children with feeding disorders. However, there is currently no established gold standard for what effective multidisciplinary practice should look like, indicating a need for further research in this field.

4. **Need for Data and Documentation**: There is a substantial gap in understanding the prevalence and experiences of children requiring tube feeding. Collecting data on how many children are using feeding tubes and the different settings in which these services are is necessary to improve healthcare services and reduce waiting times for families.

5. **Perspective Shift on Tube Feeding**: It's essential to reframe the narrative surrounding tube feeding from being seen solely as a lifesaving procedure to a means of enabling children to engage in everyday activities and family experiences. This shift in perspective promotes the idea that tube feeding can help children lead fulfilling lives while participating in family meals and social events.

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Here are some key quotes and ideas from the video that capture its main themes regarding Pediatric Feeding Disorder (PFD) and tube feeding:

1. **Definition of Pediatric Feeding Disorder**:
- “Pediatric feeding disorder is defined as impaired oral intake that is not age-appropriate and can be associated with medical nutritional feeding skill and/or psychosocial dysfunction.”

2. **Recognition and Diagnosis**:
- “It was only in 2019 that an actual definition was adopted, which says something about how overlooked this has been as an issue in children's healthcare.”
- “The CDC in the United States approved pediatric feeding disorder as a standalone diagnostic code in their 2021 International Classification of Disease.”

3. **Multifaceted Nature of Feeding Difficulties**:
- “Those four domains of medical, nutritional, feeding skill, and psychosocial are important because they interact and can affect each other.”

4. **Central Role of Family**:
- “It’s not just about getting nutrients into a digestive system. Tube feeding affects everyone around a child logistically, emotionally, and socially.”

5. **Addressing Service Gaps**:
- “Tube feeding often falls through the cracks in the health system because it happens in so many different parts of the health system.”

6. **The Importance of Multidisciplinary Care**:
- “This is sort of a gold standard of multidisciplinary pediatric feeding clinics, meaning lots of different, usually pediatrics, speech pathology, occupational therapy, maybe dieticians together.”

7. **Engaging Families**:
- “We need to distinguish between pediatric feeding disorder in general and PFDT, which is pediatric feeding disorder that requires tube feeding.”
- "Families learn a lot about their child. They know their child best, they know their family best."

8. **The Emotional Aspect of Feeding**:
- “Parents said, I don’t feed my child using a tube, I feed them with my heart.”
- “A feeding tube isn’t seen as a barrier to that expression of love. The tube might fill a stomach, but a shared meal fills a heart.”

9. **Life enabling vs. Life saving**:
- “We’d really love to see this kind of transition from seeing the tube as lifesaving to life enabling.”

10. **Community and Connection**:
- “Connecting families is a huge big deal. [...] It’s something that as a society and a community we need to make happen.”

These quotes provide insight into the complexities and challenges faced by families dealing with pediatric feeding disorders, the importance of community and family involvement, and the need for comprehensive healthcare solutions in this area.

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Here are some articles that are similar to the video on pediatric feeding disorder and tube feeding:

1. **Pediatric Feeding Disorders: Understanding Diagnosis and Treatment**
This article discusses the various types of pediatric feeding disorders, including the newly established diagnostic criteria, and the importance of early identification and intervention. It outlines how healthcare professionals can better support families facing these challenges.

2. **The Role of Tube Feeding in Pediatric Care**
This piece focuses on the indications for tube feeding in children, detailing the different types of feeding tubes available, their insertion procedures, and management strategies. It also examines the psychosocial impact on families and the importance of holistic approaches.

3. **Family-Centered Care for Children with Feeding Difficulties**
An exploration of family-centered practices in managing pediatric feeding disorders, this article emphasizes the significance of involving families in decision-making processes regarding feeding techniques and provides practical strategies for healthcare providers.

4. **Emotional and Social Aspects of Tube Feeding in Children**
This article delves into the emotional and social challenges faced by families with tube-fed children, including strategies to create a supportive environment and the importance of peer interaction among children and families.

5. **Advocating for Children with Feeding Disorders: A Health Care Perspective**
Here, the focus is on advocacy efforts for children with feeding disorders, including the role of healthcare providers in improving access to services and resources for affected families, as well as collaborative models of care.

6. **Challenges in Pediatric Tube Feeding Management**
This article reviews common challenges that families encounter when managing tube feeding and suggests a multidisciplinary approach to address issues such as family education, emotional support, and nutritional needs.

7. **Developing Multidisciplinary Clinics for Pediatric Feeding Issues**
A discussion on the establishment of multidisciplinary clinics that cater to children with feeding difficulties, integrating different specialties like pediatrics, nutrition, speech therapy, and psychology for comprehensive care.

8. **From Diagnosis to Intervention: Guidelines for Pediatric Feeding Disorders**
This article presents a framework for the diagnosis and management of pediatric feeding disorders, touching upon evidence-based interventions and the importance of continuous family support throughout the child's feeding journey.

These articles provide a spectrum of information relevant to pediatric feeding disorders, tube feeding, and the holistic approach needed to support the children and families affected by these challenges.

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Pediatric feeding disorder.

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Um, I'll say exactly what it means technically in a moment.

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Broadly, we're in the area of young children,

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so we've been working primarily with children under five,

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who have complex feeding difficulties.

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So for various reasons they're not able

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to consume food in the volumes

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or in the manner that most

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of young children would be able to.

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It was only in 2019 that an actual definition

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of pediatric feeding disorder was proposed

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and adopted, which says something about

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how overlooked this has been

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as an issue in children's healthcare.

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So the Center for Disease Prevention,

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the CDC in the United States approved

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pediatric feeding disorder

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as a standalone diagnostic code in their 2021 in

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International classification of disease.

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That was such a big deal, a huge milestone in advocacy

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for families because there are so many different reasons

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why children might have feeding difficulties,

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never really was all brought together in one place.

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But to see this as a kind of diagnosis in its own right,

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it's so important.

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It's actually defined as impaired oral intake

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that is not age appropriate

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and can be associated with medical nutritional

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feeding skill and

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or psychosocial dysfunction.

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So impaired oral intake refers to the inability

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to consume sufficient food

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or liquid to meet a child's nutrition

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or hydration requirements.

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Those four domains of medical nutritional feeding skill

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and psychosocial are important because they, they interact

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and can affect each other by wanting to listen to families

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and recognizing that, whilst there are

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some amazing services

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and healthcare providers, you know, working hard

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with families,

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it all started from some clinicians realizing

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that perhaps not all families needs were being met in

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the best possible way.

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Our response was to start by listening to families

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and to think within this pediatric feeding disorder space

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and particularly focusing on

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what you might call a more acute

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or pointy end where a feeding tube is needed.

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We wanted to hear from families so that we could kind

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of help services and society more generally make it so

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that families can move from just about coping

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with this challenge to thriving despite there

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being feeding difficulties.

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We need to distinguish between pediatric feeding disorder in

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general and PFDT, which is pediatric feeding disorder

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that requires tube feeding.

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So the tea is for tube

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where a child can't safely chew or swallow.

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We still need to get nutrition into their digestive

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system. Feeding

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Tubes are a very safe way of doing that, very reliable.

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There are lots of different kinds of feeding tubes.

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Most children start their tube feeding journey

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with what's called a nasogastric tube.

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You might have seen it on some pictures.

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It comes from somewhere behind the ear.

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It's usually stored, you know,

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behind their head when it's not being used, goes

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inside their nose and the tube goes all the way

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around down into their stomach.

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Inserting it isn't painful,

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but it's certainly not comfortable.

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But once it's there, the idea is it stays

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there fairly stably.

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They can come out sometimes

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and that's the most common starting point on

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a tube feeding journey.

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Other feeding tubes can be surgically placed,

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so you can have one just right down by your belly button.

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It takes it away from your face.

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There are all sorts of different ways it can interact

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with the digestive system.

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So PFDT is the kind of the response we use where chewing

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and swallowing aren't safe for a child

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and we can just get that nutrition always in liquid form

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safely into, you know, a child's digestive system.

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So they're getting all the nutrition that we know they need.

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The priorities in that are,

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you see even the language I've been using so far

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when you are feeding through a tube, we need

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to realize it's not just about getting

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nutrients into a digestive system.

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Tube feeding affects everyone around a child logistically,

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emotionally and socially.

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Their parents, their siblings.

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So whilst the tube fixes the problem of

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how do we get nutrition into a stomach

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or a digestive system, that narrow focus isn't going

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to be enough to help families really thrive

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and cope with what's going on.

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So the first priority is to think not just

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of a digestive system, not even just of a child,

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but of tube feeding as part

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of a whole family unit if you like.

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The second priority is that, as I mentioned

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before, tube feeding often falls

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through the cracks in the health system

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because it happens in so many different parts

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of the health system in neonatal units where, you know,

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premature babies might be looked

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after in childhood cancer units

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where cerebral palsy is going on in

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different surgical units.

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And so it's very hard to kind

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of get a picture of it all at once.

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And it's a priority really helped by this new definition

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and, you know, diagnostic category so that we can

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know what's going on.

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It took us a year working with one hospital near

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where I am in Sydney to find out

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that a hospital couldn't tell us

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how many children are tube feeding under

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its care on any one day.

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It was just too hard. Another priority is to

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understand and start to document the different locations

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where and services where people receive this care.

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This is sort of a gold standard

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of multidisciplinary pediatric feeding clinics, meaning lots

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of different, usually pediatrics, speech pathology,

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occupational therapy, maybe dieticians together.

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But we know anecdotally that support

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for these families happens in lots

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of different formats in lots of different places,

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but we don't have a clear picture of that and

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unless we, we know that we can't improve services.

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And the final part is at the moment there's no

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was there's an idea that these multidisciplinary clinics

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would be a gold standard

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because they draw on so many different forms of expertise

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to offer diverse, you know, the right kind

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of support to families.

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There's not an a real kind of gold standard

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or prior to our work of what that practice should look like

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and what kind of a good journey

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through tube feeding is for a family.

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Just like you might rely on a national census to know

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how many young children you have that are going

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to need school in five years time

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or how many, you know, people are ac will need, you know,

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chronic care looking after when, when they're older.

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We need to know how many people are actually experiencing

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tube feeding with their children under a particular age.

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Just how many so we can make sure that,

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those services don't blow out with huge waiting lists.

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And that is a problem that we know

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that there's often a very long waiting list to get into some

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of the, the services

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and every week where a child isn't getting that nutrition

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that they need or you know, kind of getting extra support

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around tube feeding is a lot weak lost in terms

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of their transition to oral feeding.

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Perhaps for those for whom it would be possible, we need

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to know why different families are accessing these services

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and whether different reasons

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for tube feeding being needed in the first place is

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associated with different outcomes in terms of, you know,

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children's thriving through adequate nutrition,

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but also different challenges for families

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around tube feeding.

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And we need to know how long this is a big deal.

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Most children who tube feed will at some point

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be able to feed orally.

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Tube feeding is usually temporary.

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Temporary can mean anything from a few days

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to months or even years.

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Um, in the United States, it's very clear

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that if you expect tube feeding

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to go on longer than six weeks, you would move from an NG

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to a surgical tube

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because NG tubes come out so easily,

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these ones that come around your face.

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But also, so that's one thing.

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The other thing is when you start tube feeding, you'd want

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to be talking about tube weaning.

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The process of learning

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to feed without the tube whenever that's possible.

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If we don't measure how long young children are tube feeding

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for, we can't say if we're weaning them too late.

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My guess would be we generally are, but it's,

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and it would be better for families

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and easier for the tube to be removed

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and the child to be weaned off tube feeding

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where possible earlier.

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Unless we know how long tube feeding is going on for,

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we can't say that we are doing that.

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Well. What we've found by listening to families

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and talking to clinicians,

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there are some things which we know will make a big

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difference to how quickly families can go from just about

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coping to struggling to thriving whilst their

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Child tube feeds.

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One of them is that the services

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overall address the child and their family.

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So I mentioned a little bit

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before that we,

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we don't just focus on a digestive system getting enough

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calories every day, but we ask questions like,

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was there something that you wanted to do

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as a family this week that the tube stopped you doing?

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And understanding maybe actually

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how can we make that possible?

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A second area is specifically in clinical practice.

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Often when you look at research around healthcare,

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it's pointing to problems and challenges

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and care delivery and that's important.

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We, we think particularly in this space, it's really crucial

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to recognize and strive for brilliance in practice.

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We've done a study where we've documented

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that we've asked clinicians what they, you know, kind

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of feel that brilliant practices, we've shown

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that they're possible, that brilliance often relates to

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that holistic approach

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and particularly a way in which professionals from different

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disciplines in the health services

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work fluidly together rather than trying to kind

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of own their particular patch.

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So there's aspects of clinical practice which would make a

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big difference to families.

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A third priority would be to really make space for

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and to legitimize family's knowledge.

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Their lived experience day to day of living with caring for

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and feeding a child who tube feeds is

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incredible, very, very quickly.

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Families learn a lot about their child.

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They know their child best, they know their family best.

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In a time pressured clinic appointment

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where there's a long waiting list of patients and families

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and maybe a parking meter going, it's very easy

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to fixate on those biomedical things

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and to create space for families to tell those things.

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To share that knowledge

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and experience with clinicians as well as

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with the wider community is really important.

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A fourth priority would be to do with

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what we call the life cycle of tube feeding.

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And that means from the first day that a tube is introduced

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to a child, either until the last day, the day

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that the tube is removed, or for children

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for whom it will be a lifelong, aspect of how they feed

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to how you thrive

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and live a full healthy, wonderful life as a person

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who tube feeds for your entire life to get to

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that life cycle issue.

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So we always have an end in mind either long-term thriving

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or the day the tube gets removed.

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There are a couple of key things.

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One is who can actually safely

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and confidently feed a child using a tube?

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In many cases, hospitals are time pressured

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and a family gets sent home

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and the only person who might have

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been taught is usually the mother.

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Um, now do we rely on mothers to teach their husbands

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or wives or partners, granny and granddad, their aunts

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and uncles, the caregivers?

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That's a lot. And so what we know happens is there's a lot

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of asymmetry in feeding.

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That's a general point anyway.

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You know, fathers can't breastfeed a child for example,

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but when you introduce a tube feeding situation

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and only a mother can feed, that really stretches

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that asymmetry in a way

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that isn't helpful for many families.

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So making sure that whoever would like

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to be involved in feeding can confidently feed would be

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really important, including, for example,

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professionals in daycare

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and playgroup settings where we know

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that sometimes families get excluded

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because the person looking

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after the child during the daytime wouldn't feel comfortable

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and safe to tube feed a child.

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There are also key decisions in the tube feeding lifecycle

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about whether or when to go from a nasogastric tube,

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no surgery, but very visible, easy to pull out

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to a surgical tube.

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There are good reasons why families might

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be hesitant to do that.

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Most families we spoke to said when I did it,

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I wished I'd done it sooner.

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So we don't want to be bossing families about this,

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but we do want to find ways

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and need to find ways that families can feel informed

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and in control of those decisions.

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For many young children who are, you know,

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ill in many other ways,

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another surgery is a really off-putting thing,

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another general anesthetic

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so can understand why parents might defer that

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and it might seem more permanent than a nasogastric tube,

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but we want to make sure that families understand

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and can benefit from other families' experience

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when making that decision.

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So to start training not just one parent, to be able to

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or carer to be able to deliver a tube feed

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that moment potentially of shifting from a nasogastric to a,

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a perm, a surgically placed tube

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and always having that tube weaning

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or the long term thriving in mind.

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What tends to happen if you have a child who's got cancer,

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you'll be very quickly enrolled into a childhood cancer

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support group or cerebral palsy.

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Those things exist and absolutely we'd love for them

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to continue to exist,

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but not every child who has cancer uses a feeding tube.

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Not every child with autism

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or cerebral palsy uses a feeding tube,

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and yet in the early days of tube feeding particularly,

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that can be the main thing.

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It's the main logistical challenge.

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It's what may stop you going out of the house.

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Many parents said, you know, our son

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or our daughter never got

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to have a meal alongside somebody else who's feeding the

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same way they did until we ran some tube feeding

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picnics and that happened for them.

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Um, and so something as small as that, you know, you get to,

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you know, bottle feed or use your hands

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or your knife and fork.

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Wouldn't it be wonderful if every child

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who tube feeds at some point early on in their journey gets

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to have a meal where somebody else is, is tube feeding

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and every family gets

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to meet somebody else who's experiencing

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or has experienced something similar.

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Connecting families is a huge big deal.

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That's one of the reasons why that data is so important.

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Once we know how many families that there are

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and where they are and what kind

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of services they're supporting, we think we could do that.

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That's not a,

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something we think clinicians are responsible for,

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but it's something that as a society

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and a community we need to make happen.

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Poll project is a bit about listening to parents

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and a couple of things I think really sum up the values

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and kind of the spirit of where things should be going.

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There are two, firstly, two similar phrases.

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One is parents said, I don't feed my child using a tube,

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I feed them with my heart.

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And no matter whether you are using a breast, a bottle

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plates, bowls and spoons or feeding tubes as a parent

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or a close carer of a child,

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you are really feeding with your heart.

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It's a way we express love for the people in our care.

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And what's really important is

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that a feeding tube isn't seen as a barrier to

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that expression of love.

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Another way of thinking about the same thing is a feeding

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tube might fill a stomach, but a shared meal fills a heart.

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And a lot of what's really important, including in how we do

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that brilliant clinical practice

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and how families connect with each other, is

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that tube feeding isn't seen

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as this hyper medicalized procedure.

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Families are already hyper medicalized

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with everything else that's going on.

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And the reason for leading tube feeding in the first place.

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We'd love it to be that tube feeding is just part

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of a mealtime and we are eating together

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and the child will have, you know, some objects like a bowl

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and a spoon and they might be included in the, in the meal.

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It's another, it's just a another way of bonding

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with a child overshared food.

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So I think the, firstly, we'd just like to land

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with those sentiments from parents.

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Another one was that, often families start thinking

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that feeding tubes are what's saving their child's life.

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And that's true without a feeding tube.

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Many of these children wouldn't be able

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to receive adequate nutrition

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and that's not a long term sustainable way to be.

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Um, but what's really actually the, the trick

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with tube feeding is to go from seeing the tube

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as lifesaving to life enabling.

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It's because we have a feeding tube up here on the face

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or down here near the navel,

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that children could do all the other things that they like

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to do to play, to run, to play hide

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and seek, to go on trampolines and bouncy castles

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and swim and go to parties.

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And so we'd really love to see this kind of, you know,

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the clinical practices, data collection, all those things

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to do with the tube feeding lifecycle.

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Really the spirit of all of that is around

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tubes are still a way to express love for a child,

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just a different way of delivering it into the stomach

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that is seeing the child and the whole family together.

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It's seeing them in that context as a family that's going

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to learn hopefully more quickly than families in the past

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to thrive and for that tube to be what enables them

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to have the life they want as a family for that child

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to have the life that they would otherwise have.

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Um, and for that thriving to take place.

Understanding Pediatric Feeding Disorder: A Breakthrough in Children's Healthcare

00:00:00 - Pediatric feeding disorder. I'll say exactly what it means technically in a moment. Broadly, we're in the area of young children, so we've been working primarily with children under five, who have complex feeding difficulties. So for various reasons they're not able to consume food in the volumes or in the manner that most of young children would be able to. It was only in 2019 that an actual definition

00:00:33 - and adopted, which says something about how overlooked this has been as an issue in children's healthcare. So the Center for Disease Prevention, the CDC in the United States approved pediatric feeding disorder as a standalone diagnostic code in their 2021 in International classification of disease. That was such a big deal, a huge milestone in advocacy

00:01:05 - why children might have feeding difficulties, never really was all brought together in one place. But to see this as a kind of diagnosis in its own right, it's so important. It's actually defined as impaired oral intake that is not age appropriate and can be associated with medical nutritional feeding skill and or psychosocial dysfunction.

Understanding Pediatric Feeding Disorder and Tube Feeding

00:01:36 - to consume sufficient food or liquid to meet a child's nutrition or hydration requirements. Those four domains of medical nutritional feeding skill and psychosocial are important because they, they interact and can affect each other by wanting to listen to families and recognizing that, whilst there are some amazing services and healthcare providers, you know, working hard

00:02:04 - it all started from some clinicians realizing that perhaps not all families needs were being met in the best possible way. Our response was to start by listening to families and to think within this pediatric feeding disorder space and particularly focusing on what you might call a more acute or pointy end where a feeding tube is needed. We wanted to hear from families so that we could kind of help services and society more generally make it so that families can move from just about coping

00:02:38 - being feeding difficulties. We need to distinguish between pediatric feeding disorder in general and PFDT, which is pediatric feeding disorder that requires tube feeding. So the tea is for tube where a child can't safely chew or swallow. We still need to get nutrition into their digestive system. Feeding Tubes are a very safe way of doing that, very reliable. There are lots of different kinds of feeding tubes.

Understanding Nasogastric Tube Feeding: Basics and Impact on Families

00:03:08 - with what's called a nasogastric tube. You might have seen it on some pictures. It comes from somewhere behind the ear. It's usually stored, you know, behind their head when it's not being used, goes inside their nose and the tube goes all the way around down into their stomach. Inserting it isn't painful, but it's certainly not comfortable. But once it's there, the idea is it stays there fairly stably. They can come out sometimes and that's the most common starting point on a tube feeding journey. Other feeding tubes can be surgically placed,

00:03:39 - It takes it away from your face. There are all sorts of different ways it can interact with the digestive system. So PFDT is the kind of the response we use where chewing and swallowing aren't safe for a child and we can just get that nutrition always in liquid form safely into, you know, a child's digestive system. So they're getting all the nutrition that we know they need. The priorities in that are, you see even the language I've been using so far

00:04:09 - to realize it's not just about getting nutrients into a digestive system. Tube feeding affects everyone around a child logistically, emotionally and socially. Their parents, their siblings. So whilst the tube fixes the problem of how do we get nutrition into a stomach or a digestive system, that narrow focus isn't going to be enough to help families really thrive and cope with what's going on. So the first priority is to think not just

Integrating Tube Feeding into Family-Centered Care

00:04:41 - but of tube feeding as part of a whole family unit if you like. The second priority is that, as I mentioned before, tube feeding often falls through the cracks in the health system because it happens in so many different parts of the health system in neonatal units where, you know, premature babies might be looked after in childhood cancer units where cerebral palsy is going on in different surgical units. And so it's very hard to kind

00:05:09 - And it's a priority really helped by this new definition and, you know, diagnostic category so that we can know what's going on. It took us a year working with one hospital near where I am in Sydney to find out that a hospital couldn't tell us how many children are tube feeding under its care on any one day. It was just too hard. Another priority is to understand and start to document the different locations

00:05:41 - This is sort of a gold standard of multidisciplinary pediatric feeding clinics, meaning lots of different, usually pediatrics, speech pathology, occupational therapy, maybe dieticians together. But we know anecdotally that support for these families happens in lots of different formats in lots of different places, but we don't have a clear picture of that and unless we, we know that we can't improve services. And the final part is at the moment there's no

Establishing Standards and Understanding Tube Feeding Needs

00:06:12 - would be a gold standard because they draw on so many different forms of expertise to offer diverse, you know, the right kind of support to families. There's not an a real kind of gold standard or prior to our work of what that practice should look like and what kind of a good journey through tube feeding is for a family. Just like you might rely on a national census to know how many young children you have that are going to need school in five years time or how many, you know, people are ac will need, you know,

00:06:45 - We need to know how many people are actually experiencing tube feeding with their children under a particular age. Just how many so we can make sure that, those services don't blow out with huge waiting lists. And that is a problem that we know that there's often a very long waiting list to get into some of the, the services and every week where a child isn't getting that nutrition that they need or you know, kind of getting extra support around tube feeding is a lot weak lost in terms

00:07:14 - Perhaps for those for whom it would be possible, we need to know why different families are accessing these services and whether different reasons for tube feeding being needed in the first place is associated with different outcomes in terms of, you know, children's thriving through adequate nutrition, but also different challenges for families around tube feeding. And we need to know how long this is a big deal. Most children who tube feed will at some point be able to feed orally.

Navigating Tube Feeding: Duration, Weaning, and Family Support

00:07:46 - Temporary can mean anything from a few days to months or even years. in the United States, it's very clear that if you expect tube feeding to go on longer than six weeks, you would move from an NG to a surgical tube because NG tubes come out so easily, these ones that come around your face. But also, so that's one thing. The other thing is when you start tube feeding, you'd want to be talking about tube weaning. The process of learning to feed without the tube whenever that's possible.

00:08:20 - for, we can't say if we're weaning them too late. My guess would be we generally are, but it's, and it would be better for families and easier for the tube to be removed and the child to be weaned off tube feeding where possible earlier. Unless we know how long tube feeding is going on for, we can't say that we are doing that. Well. What we've found by listening to families and talking to clinicians, there are some things which we know will make a big

00:08:50 - coping to struggling to thriving whilst their Child tube feeds. One of them is that the services overall address the child and their family. So I mentioned a little bit before that we, we don't just focus on a digestive system getting enough calories every day, but we ask questions like, was there something that you wanted to do as a family this week that the tube stopped you doing? And understanding maybe actually how can we make that possible?

Brilliance in Pediatric Care: Recognizing Family Expertise

00:09:24 - Often when you look at research around healthcare, it's pointing to problems and challenges and care delivery and that's important. We, we think particularly in this space, it's really crucial to recognize and strive for brilliance in practice. We've done a study where we've documented that we've asked clinicians what they, you know, kind of feel that brilliant practices, we've shown that they're possible, that brilliance often relates to

00:09:53 - and particularly a way in which professionals from different disciplines in the health services work fluidly together rather than trying to kind of own their particular patch. So there's aspects of clinical practice which would make a big difference to families. A third priority would be to really make space for and to legitimize family's knowledge. Their lived experience day to day of living with caring for

00:10:25 - incredible, very, very quickly. Families learn a lot about their child. They know their child best, they know their family best. In a time pressured clinic appointment where there's a long waiting list of patients and families and maybe a parking meter going, it's very easy to fixate on those biomedical things and to create space for families to tell those things. To share that knowledge and experience with clinicians as well as with the wider community is really important.

The Life Cycle of Tube Feeding: Supporting Families and Caregivers

00:10:58 - what we call the life cycle of tube feeding. And that means from the first day that a tube is introduced to a child, either until the last day, the day that the tube is removed, or for children for whom it will be a lifelong, aspect of how they feed to how you thrive and live a full healthy, wonderful life as a person who tube feeds for your entire life to get to that life cycle issue. So we always have an end in mind either long-term thriving

00:11:31 - There are a couple of key things. One is who can actually safely and confidently feed a child using a tube? In many cases, hospitals are time pressured and a family gets sent home and the only person who might have been taught is usually the mother. now do we rely on mothers to teach their husbands or wives or partners, granny and granddad, their aunts and uncles, the caregivers? That's a lot. And so what we know happens is there's a lot

00:12:01 - That's a general point anyway. You know, fathers can't breastfeed a child for example, but when you introduce a tube feeding situation and only a mother can feed, that really stretches that asymmetry in a way that isn't helpful for many families. So making sure that whoever would like to be involved in feeding can confidently feed would be really important, including, for example, professionals in daycare and playgroup settings where we know that sometimes families get excluded because the person looking

Navigating Tube Feeding Decisions for Children

00:12:32 - and safe to tube feed a child. There are also key decisions in the tube feeding lifecycle about whether or when to go from a nasogastric tube, no surgery, but very visible, easy to pull out to a surgical tube. There are good reasons why families might be hesitant to do that. Most families we spoke to said when I did it, I wished I'd done it sooner. So we don't want to be bossing families about this, but we do want to find ways and need to find ways that families can feel informed

00:13:06 - For many young children who are, you know, ill in many other ways, another surgery is a really off-putting thing, another general anesthetic so can understand why parents might defer that and it might seem more permanent than a nasogastric tube, but we want to make sure that families understand and can benefit from other families' experience when making that decision. So to start training not just one parent, to be able to or carer to be able to deliver a tube feed that moment potentially of shifting from a nasogastric to a,

00:13:38 - and always having that tube weaning or the long term thriving in mind. What tends to happen if you have a child who's got cancer, you'll be very quickly enrolled into a childhood cancer support group or cerebral palsy. Those things exist and absolutely we'd love for them to continue to exist, but not every child who has cancer uses a feeding tube. Not every child with autism or cerebral palsy uses a feeding tube, and yet in the early days of tube feeding particularly, that can be the main thing.

Connecting Families: The Heart of Tube Feeding

00:14:09 - It's what may stop you going out of the house. Many parents said, you know, our son or our daughter never got to have a meal alongside somebody else who's feeding the same way they did until we ran some tube feeding picnics and that happened for them. and so something as small as that, you know, you get to, you know, bottle feed or use your hands or your knife and fork. Wouldn't it be wonderful if every child who tube feeds at some point early on in their journey gets to have a meal where somebody else is, is tube feeding and every family gets

00:14:40 - or has experienced something similar. Connecting families is a huge big deal. That's one of the reasons why that data is so important. Once we know how many families that there are and where they are and what kind of services they're supporting, we think we could do that. That's not a, something we think clinicians are responsible for, but it's something that as a society and a community we need to make happen. Poll project is a bit about listening to parents and a couple of things I think really sum up the values

00:15:14 - There are two, firstly, two similar phrases. One is parents said, I don't feed my child using a tube, I feed them with my heart. And no matter whether you are using a breast, a bottle plates, bowls and spoons or feeding tubes as a parent or a close carer of a child, you are really feeding with your heart. It's a way we express love for the people in our care. And what's really important is that a feeding tube isn't seen as a barrier to that expression of love.

Transforming Tube Feeding: From Lifesaving to Life Enabling

00:15:43 - tube might fill a stomach, but a shared meal fills a heart. And a lot of what's really important, including in how we do that brilliant clinical practice and how families connect with each other, is that tube feeding isn't seen as this hyper medicalized procedure. Families are already hyper medicalized with everything else that's going on. And the reason for leading tube feeding in the first place. We'd love it to be that tube feeding is just part of a mealtime and we are eating together

00:16:14 - and a spoon and they might be included in the, in the meal. It's another, it's just a another way of bonding with a child overshared food. So I think the, firstly, we'd just like to land with those sentiments from parents. Another one was that, often families start thinking that feeding tubes are what's saving their child's life. And that's true without a feeding tube. Many of these children wouldn't be able to receive adequate nutrition and that's not a long term sustainable way to be.

00:16:46 - with tube feeding is to go from seeing the tube as lifesaving to life enabling. It's because we have a feeding tube up here on the face or down here near the navel, that children could do all the other things that they like to do to play, to run, to play hide and seek, to go on trampolines and bouncy castles and swim and go to parties. And so we'd really love to see this kind of, you know, the clinical practices, data collection, all those things to do with the tube feeding lifecycle.

Embracing Tube Feeding as an Expression of Love

00:17:39 - tubes are still a way to express love for a child, just a different way of delivering it into the stomach that is seeing the child and the whole family together. It's seeing them in that context as a family that's going to learn hopefully more quickly than families in the past to thrive and for that tube to be what enables them to have the life they want as a family for that child to have the life that they would otherwise have. and for that thriving to take place.

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