Conference PaperPDF Available

Psychosocial intervention for parents of tube fed children.

Authors:
  • Institute for Feeding Tube Dependency

Abstract and Figures

Introduction: Literature on mothers’ acceptance of their children’s tube feeding is heterogeneous. When a child is fed via gastrostomy, parents may report higher quality of life as well as higher stress levels. Qualitative research suggests that tube feeding can conflict with fundamental expectations about the mothering role. While most parents give consent to a feeding tube placement, they report about inflicting feeling regarding the tube feeding of their child. This inflicting feelings become more prominent the longer the child is tube fed, resulting in less compliance and a sometimes not recommended tube withdraw without therapeutic counseling. Intervention: he intervention concept have been based on research regarding the impact of feeding the child via tube on the parental identity and emotional states (Wilken, 2012). It include health teaching aspect regarding the handling of the tube and the feeding situation as well as on the impact of tube feeding on the emotional state of the parents. In the concept parents are counseled in the three phases of tube feeding: indication, maintenance as well as weaning. In the indication phase most parents struggle with the handling as well as with a feeling of have failed as parents, because a feeding routine could not be established. In the maintenance phase parents struggeling with complication like vomiting, nausea or food refusal as well as with the wish to establish a feeding routine as possible. In the weaning phase parents are guided through the weaning process with their child. Parents report a better coping with the feeding tube, if they are regular counseled. Conclusion: A psychological counseling based on detailed knowledge regarding enteral tube feeding as well as about the psychological impact of this kind of feeding may improve parents emotional and mental state as well as compliance with the feeding tube. Psychological counseling could also be a key element if parents a non-compliant with a feeding tube, which is indicated.
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PSYCHOSOCIAL INTERVENTION
FOR PARENTS OF TUBE FED
CHILDREN
Markus Wilken
Spectrum Pediatrics
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
the baby?
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?
QUALITATIVE META-ANALYSIS
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
sickness.
Take your time to speak about concerns, discuss the treatment
strategy.
Follow the parents recommendations and listen to their
observations.
....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
-SOME TOPICS-
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
ENVIRONMENT
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
neighborhood.
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
beloved child!
...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).
Contact Details:
Markus Wilken, PhD
Hopfengartenstr. 25
D-53721 Siegburg
www.markus-wilken.de
mail@markus-wilken.de
Skype: tubeweaning.com
REFERENCES
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,
248-255
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.
Article
Full-text available
n den letzten drei Dekaden ist ein signifikanter Anstieg von frühkindlichen Futterstörungen und Sondendependenz berichtet werden. Jenseits von Risikofaktoren ist bisher wenig über den Verlauf der Störungsgenese bekannt. Im Rahmen dieses Artikels werden vier Ebenen der Störungsgenese von Fütterstörung und Sondendependenz vorgestellt: 1. Der Pfad wird verlassen: Aufgrund von fehlenden Entwicklungsimpulsen, Entwicklungswiderständen oder traumatischen Zusammenbrüchen kommt es zur Entgleisung der Essentwicklung. 2. Das Nervensystem schlägt zurück: Aufgrund des daraus entstehenden Bedrohungserlebens, werden Nervus-Vagus-Schaltkreise aktiviert, die Flucht-Kampf und Erstarrungsverhalten aktiveren und damit die orale Funktion hemmen. 3. Der Erleben zerfällt: Das Erleben des Kindes organisiert sich auf fünf Ebenen: Sensumotorik, Wahrnehmung, Handlungsabfolge, Affekt und Rahmung . Diese sind in der Esssituation durch Abwehr, negative Affekte und Auseinderbrechen des Erlebens gekennzeichnet. 4. Nicht nährend Beziehung: Zwischen Eltern und Kind kommt es zu Fehlabstimmung, da das Verhalten des Kindes nicht dem intuitiven Elternprogramm entspricht und die Eltern häufig traumatisiert sind. Die Therapie der Essstörung und der Sondendependenz setzt an diesen vier Störungsebenen an, um die Entwicklung wieder auf einen Pfad zu bringen, welcher zu einem adaptiven Essverhalten führt.
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Literature on mothers' acceptance of their children's tube feeding is heterogeneous. When a child is fed via gastrostomy, parents may report higher quality of life and higher stress levels. Qualitative research suggests that tube feeding can conflict with fundamental expectations about the mothering role. In this qualitative meta-analysis, parental statements from various studies have been excerpted and theory-based analyzed. Data suggest that feeding a child orally is not only an important aspect of mothering but also a key element for the development of a motherhood identity. Nonoral feeding often results in psychological stress and a struggle to negotiate the motherhood identity successfully and may result in traumatization of the mother. Preventive psychological guidance is recommended to decrease the risk of posttraumatic stress disorder in mothers and disturbances in the mother-child relationship and to assist in maternal coping with a child's feeding disorder.
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A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK. Anthropometric measures included weight, mid-upper-arm and head circumference. Five-day prospective food diaries were completed and data on physical health and surgical outcomes recorded. Seventy-six children participated and underwent gastrostomy (44 males, 32 females; median age 3 y 4 mo, range 4 mo-17 y 5 mo), and 35/76 required an anti-reflux procedure. Categories of disability were: cerebral palsy (32/76), syndrome of chromosomal or other genetic origin (25/76), slowly progressive degenerative disease (11/76), and unconfirmed diagnosis (8/76). Most children had gross motor difficulties (99%) and were non-ambulant (83%). Oromotor problems were identified in 78% of children, 69% aspirated, and 65% were fed nasogastrically before surgery. The mean weight before surgery was -2.84 standard deviation score (SDS; SD 2.21, range -9.8 to 3.4). Two-thirds of children achieved catch-up growth postoperatively: weight-for-age (mean difference 0.51 SDS, 95% CI 0.23-0.79, p=0.001) and mid-upper arm circumference (mean difference 1.12 cm, 95% confidence interval 0.50-1.75, p=0.001). Health gains included a reduction in drooling, secretions, vomiting, and constipation. Major surgical complications were found in 13/74 children. The study provides evidence that catch-up growth and health gains are possible following gastrostomy.