Supporting Caregivers and Tube-Fed Families

Your tube feeding journey can come with a lot to learn, especially in the beginning as you adjust to life after feeding tube placement. But behind every tubie are caregivers who are shouldering a lot of work. Whether that caregiver is you or someone you care about, having feeding tube support, trusted resources and a community that understands can make a difference.

Finding Your Footing as a Caregiver
Caregiving is a role with no standard manual or user instructions. Sure, there may be instructions and guidance from your healthcare team, but much of the day-to-day rhythm of caring for a tubie is learned from experience.

Yes, it can be a lot: The early days can feel disorienting. There are new routines, tools and equipment to master, and adjustments to everyday life that can affect the entire family. Some days may feel confusing, like when figuring out what the term “bolus feed” means. You may also feel lonely, especially if no one else understands what you’re going through. And some days are just plain stressful. Those feelings can be a natural part of adjusting to something new and complex, and you don’t have to navigate them alone.

We're All Learning Together
Here's something worth remembering: you don't have to figure it all out alone, and you don't have to figure it all out right away.

Consider these ways to feel supported and give you some caregiver confidence:

• Give yourself grace. Missed a step in the feeding routine? Second-guessing a pump setting? These moments happen to even the most experienced caregivers. It’s all about progress, not perfection.
• Find your people. Turn isolating experiences into shared ones by connecting with other tubie caregivers through a local feeding tube support group, an online community or a hospital-connected program. Trading stories with someone who truly gets it is powerful.
• Turn to organizations dedicated to supporting caregivers. Groups like the Oley Foundation offer education and peer support for helping families navigate tube feeding. And Nestlé Health Science's caregiver support hub rounds up resources: from tube feeding basics to community organizations in one place.
• Ask your care team questions, big or small. No question is too basic when you're learning something new. There’s a lot of information to take in, and it’s okay to ask about something you think you should already know, or if you ask the same question more than once.

Little by little, some of what once felt unfamiliar may start to feel more manageable as you find the routines, resources and support that work for you and your family.

Supporters Need Support, Too
As the saying goes: you can’t fill from an empty cup. Caregiving is an act of constant giving but you also need time to focus on your own well-being. Taking a break isn't neglecting your role – it’s what allows you to keep showing up.

If you're feeling stretched thin, that’s a sign you're human and that you’re doing something genuinely hard. Reaching out to a friend, a support group, a counselor or resources like those linked above is a form of strength.

Connecting with others who understand the tube-feeding journey firsthand can also provide valuable support. In one study, among caregivers who spoke with another caregiver before their child’s g-tube placement, more than half found it helpful to hear another family’s story, and about one in three felt more reassured about the procedure.*

With You Every Inch
You are not alone in this feeding tube journey. Compleat® is proud to be “With You Every Inch," supporting tubies and caregivers throughout the journey. We recognize you and celebrate all that you do.

That's why we created Project Inchstone: a place for empowering caregivers and celebrating the everyday wins, big or small, that tubie caregivers and families understand so well. By sharing these moments, you can connect over common experiences while also helping others better understand and recognize the realities and joys of tube feeding.

Inchstone moments include:

• Finding a formula that works well for your child
• Trying a small taste of food by mouth for the first time
• Watching your child navigate the jungle gym at the playground
• Feeling more confident managing a feeding routine

It’s fun to see what others are celebrating, and you never know when your story might be exactly what someone else in this community needs to hear.

Visit Project Inchstone to share your inchstones and connect with others along the feeding tube journey.

*Source: Kinsella C, et. al. Experiences of Parents and Caregivers of Children Who Underwent Gastrostomy Tube Insertion. J Patient Exp. 2024 Aug 21;11. https://pubmed.ncbi.nlm.nih.gov/39176304/