Caring for a child with ongoing medical needs is a rewarding yet daunting experience. Add tube feeding to the mix and you have even more to handle. Parents of a tube-fed child report that the social and emotional issues they deal with every day can be more taxing on family life than the medical complications of tube feeding.
Top Ten Emotional Issues of Caring for a Tube-Fed Child and How to Deal
Click on the resource below each common family experience for helpful tips.
1. Limited ability to participate in activities outside the home
Feeding Tube Awareness Foundation: Tube Feeding at School
2. Family social life revolves around tube feeding
Feeding Tube Awareness Foundation: For Friends and Family
3. The public does not understand tube feeding
Feeding Tube Awareness Foundation: Feeding Tube Awareness Week
Complex Child E-Magazine: Cultivating Relationships: Relating to Your “Typical” Friends
4. Traveling with a tube-fed child is complicated
Feeding Tube Awareness Foundation: 13 Things You Need to Know When Traveling With Medical Liquids
Feeding Raya: Traveling with a Tubie: What to Pack
5. Finding a caregiver qualified to tube feed a child is difficult
Complex Child E-Magazine: Saving Your Sanity through Respite Care
6. Limited time to spend with other family members
Complex Child E-Magazine: Claiming Your Holiday Cheer
7. Family sleep patterns are disturbed
8. Parent and family stress level is high
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9. Everyday care is complicated and time-consuming
Feeding Tube Awareness Foundation: Useful Products
10. Accessing and coordinating care for a tube-fed child is hard work
Feeding Tube Awareness Foundation: Resources
What You Need from Your Healthcare Team
Know what you will need to make family life easier with a tube-fed child and ask your healthcare team how to get it. Here are some important things to think about.
- A discharge plan that addresses everything you and your tube-fed child will need at home
- Take extra time with your case worker, case manager, case coordinator or social worker.
- Education about tube feeding that starts well before it is time to leave the hospital
- Adequate time to prepare for taking a tube-fed child home
- Find out what is required at home ahead of time.
- Contact information for healthcare professionals who can help
- Keep a record of all the members of your team and who is responsible for what.
- Increased public awareness of tube feeding
What We Want You to Know: A Family and Friend Guide to Tube Feeding
- Ongoing support at home
- A dedicated healthcare team who is…
- knowledgeable about caring for a tube-fed child
- committed to caring for your child
- clear on who is responsible for each aspect of your child’s care
- available when you need them
- Support from other families who know what you are going through:
Feeding Tube Awareness Foundation Facebook Page
Reference
Enrione EB, Thomlison B, Rubin A. Medical and psychosocial experiences of family caregivers with children fed enterally at home. Journal of Enteral and Parenteral Nutrition. 2005;29(6):413-419.
Fereday J, Thomas C, Forest A, Darbyshire P. Neonatal, Paediatric and Child Health Nursing. Food for thought: investigating parents’ perspectives of the impact of their child’s home enteral nutrition. 1990;12(1):9-14.
