FOR PARENTS OF TUBE FED
MULTIPLE MEANINGS OF TUBE FEEDING
• Tube Feeding ensures the survival of critically ill infants, (1)
• releases families from stressful feeding,
• and ensures supply a of nutrition, fluid and medication.
But Parents report...
• ... a higher stress level when the child is tube fed,.... (2)
• feeling stigmatized by a loss of normality
• And feel deprived from oral feeding.
Why is there such a disconnect?
THE MOTHERHOOD CONSTELLATION
A THEORY WHERE IT NEVER MEANT TO BE USEFUL....
“1. The Life Growth theme: Can she maintain the life and growth of
2. Primary Relatedness theme: Can she emotionally engage with the
baby in her own authentic manner, and will that engagement assure his
psychological development into the baby she wants?
3. The Supporting Matrix Theme: Does she know how to create and
permit the necessary support system to fulfill these functions?
4: The Identity Reorganisation theme: Will she be able to transform her
self-identity to permit and facilitate these functions?”
(Stern, 1995, p. 174(3))
(Wilken, 2012; P.251(2))
First author Statements Life & growth Related-ness Social matrix Identity
Craig 2003 11 ++ (4) - (2) -- (0) - (1)
Craig 2006 9 / (2) - (1) + (3) ++ (3)
Ferguson 2007 33 - (4) + (4) ++ (11) - (4)
Guerriere 2003 19 - (1) -- (1) + (4) + (4)
Sleigh 2005 31 + (4) ++ (7) ++ (8) ++ (5)
Spadling 1998 12 ++ (8) - (1) -- (-) + (4)
Thorne 1997 12 + (5) ++ 6 - (1) ++ (6)
Total 127 + (28) / (22) + (27) ++ (27)
IS THERE MORE THAN THEORY?
SO WHAT SHOULD WE DO ABOUT IT?
1. Prevention: Pediatric Tube Management
2. Psychosocial Intervention for parent of tube fed children
PREVENTION: INDICATION PHASE
....then we helped the parents to accept the tube
• Prefer oral feeding.
• Make the decision for a tube placement with the parents and
accept denial when possible.
• Set-up follow-up: For nutrition, oral feeding, complications
and make it work.
• Be honest regarding: Feeding disorder, complications,
disadvantages as well as benefits.
PREVENTION: MAINTENANCE PHASE
• Evaluate the treatment goal and indication for the feeding tube.
• Set-up emergency system if the child suffers from complications or
• Take your time to speak about concerns, discuss the treatment
• Follow the parents recommendations and listen to their
....then we helped the parents to life with the tube.
PREVENTION: WEANING PHASE
• Assess the child´s readiness and what she/he needs for treatment.
• Offer an effective treatment, adjusted to the child´s medical
condition, age, skill level in an appropriate time line.
• Empower the family during treatment. The parents are the experts,
not the professionals.
• Follow the children for at least six months after wean, because there
will infection, food refusal, teething....
Help parents end the treatment, if (no longer) needed!
BUT EVEN THEN, ....
.... PARENTS ARE STILL AT RIKS.
At risk for PTSD
At risk for severe PTSD
Not at risk for PTSD
ACKNOWLEDGE THE BURDEN
• Handling of the tube is technical and lacks emotional content.
Feeding is emotional and a foundation for bonding.
• Tube feeding has side effects: Complication rate is around 30 %,
vomiting is 28 %. Parents have to live with that. (4)
• Life is never normal: There is always the tube.
• “What I am doing, is not what I want or wanted to do, as a parent and
with my child.”
How do you feel about tube feeding?
CREATE A HOLDING AND NURTURING
• Be helpful: What can I do for you?
• Be there when the parents need you: Time out, handling the health
system, translate medical reports, hold there hands…
• Be with the parents and hold them, during surgery, diagnostic
interview, painful procedures for the child, without being asked.
• You may ask: What can I do for you to feel a little better?
• You my find effective help for the problem the parents report.
• You may do that as a team, as a support system, as a hospital, as a
MESSAGES WE SHOULD SEND
CONSTRUCT A MATERNAL IDENTITY WITH THE TUBE
• Life Growth Theme: “Your child is tube fed, but you don´t did
anything wrong. You did the best!”
• Relationship Theme: “Your child is tube fed, but you love your
child and your child loves you!“
• Social Matrix: “Your child is tube fed, but you are not alone!“
• Identity: “Your child is tube fed, but you are the mother of this
...it is false economy to invest
resources in the surgical procedure but not to combine this with
adequate multidisciplinary follow-up.” (Craig et al. 2006, P.359).
Markus Wilken, PhD
1. Gottrand F. P B Sullivan PB. Gastrostomy tube feeding: when to start, what to
feed and how to stop. Eur J Clin Nutr 2010;64:S17-S21.
2. Wilken, M. The impact of child tube feeding on maternal emotional state and
identity: A qualitative meta-analysis. Journal of Pediatric Nursing (2012); 27,
3. Stern, D. N. (1995). The Motherhood Constellation: a unified view of parent-infant
psychotherapy. New York: Basic Books.
4. . Craig GM, Carr LJ, Cass H, et al. Medical, surgical, and health outcomes of
gastrostomy feeding. Dev Med Chld Neurol 2006;48:353-60.