So it is increasingly likely that at some point a child on your case load will be tube fed either for a few days or weeks or for a longer period, months or even years: indeed a survey showed that 37% of ‘Nurture & Nutrition’ readers have already been involved with a home enterally tube fed child. It is therefore important that you are aware of the needs of such children and their families, and that you know how and where to access services and support both for them and for yourself as a professional.



In recent years tube feeding in children has shifted from being a reactive method of nutritional support to a proactive one. As such it may be incorporated at an early age into a regimen which involves any one or a combination of oral, bolus and pump feeds; all of which may be given at any time of the day and night depending on the individual needs of the child and family.



The diversity of children requiring nutritional support means tube feeding may remain an integral part of a child’s nutritional intake throughout their life or it may simply be a stepping-stone to help a baby or child through a period of faltering growth. This article focuses on the needs of those babies for whom tube feeding is a relatively short-term therapy while their family and healthcare professionals work together to reestablish them on oral feeding.

In 2000 research showed families of tube fed children lacked or were given conflicting advice from hospital and community professionals about all aspects of tube feeding³. This included ‘a lack of clear, plentiful information about how to continue with oral feeding and the benefits of this’. One explanation for this could be that hospital staff focus on clinical aspects of tube feeding, assuming that community staff will provide oral feeding advice; and community staff, being conscious of their own inexperience with tube feeding, presume they have nothing to offer these families and children, assuming specialist staff at the hospital give all necessary advice and care. This theory is strengthened by research, which highlights:

• Poor liaison between hospital and community staff about the child’s prescribed care
• A lack of training available for local staff to update their knowledge on home enteral tube feeding (HETF) in order to be able to provide the necessary support³.

In addition, a recent survey conducted by ‘Nurture & Nutrition’ showed that 77% of readers feel a need for more training and information to be able support tube fed children and their families effectively.

In most cases, families of tube fed babies require normal weaning advice⁴. Not only is this necessary for the baby’s development⁵ but this is one area where normality for the family can and should be maintained. It is well known that feeding a baby is an important part of the parental role, so it is not surprising that the concept of tube feeding a baby is often as stressful, if not more so, than the practicalities involved. Giving emotional support is therefore as crucial as giving the family practical knowledge about tube feeding³. Receiving normal weaning information may also help first time parents (as well as others) to gauge what features of their child’s feeding behaviour can be attributed to normal development, rather than interpreting every difficulty as a symptom of their child’s diagnosis; which is a real tendency for these families, in the author’s experience. In this context it is emphasised that weaning information must be given sensitively depending on the individual baby’s diagnosis / prognosis, bearing in mind that it has the potential to reinforce feelings of loss.

A proactive community approach – for example, keeping contact with the family and hospital staff throughout the baby’s hospital admission - should avoid unnecessary delays in the weaning process. Sometimes the time slots for the classic weaning stages are unavoidably missed, and the family will require extra support as weaning may take longer and need an even higher degree of patience and persistence than is usual. If this is the case, it is important to remember the stages will remain the same, and should be encouraged. But the timings of the stages should not be focused on as this may create feelings of urgency and perhaps failure in the parents as they strive to make up for ‘lost’ time.


Responsibility for giving appropriate advice to the families of tube fed babies should not rest with one person. It is advisable for community staff to liase regularly with hospital staff – predominantly the dietitian – to:

• Check whether weaning advice needs to be tailored for an individual child
• Determine whether or not advice has already been given in hospital

It is suggested that community staff have a responsibility and are a resource to hospital staff in bringing the subject of weaning to their attention. Similarly it is the responsibility of hospital staff to keep community staff up to date on developments in enteral tube feeding and the specific requirements of individual children^2,4.


Undoubtedly if community professionals establish an emotionally supportive role for families, families may turn to them for practical advice too. To facilitate community training and liaison, it has been recommended that a key professional is identified as the HETF contact and expert in every region where tube fed children exist² Manufacturers of enteral tube feeds and associated products have helped fill this role.

Support groups are another source of information for both families and professionals. There is one main group PINNT (Patients on Intravenous and Nasogastric Nutrition Therapy), which has a branch for children (HALF PINNT) and another section Looking Into the Requirements of feeding Equipment (LITRE).


Contact details for patient support group:
PINNT

PO Box 3126, Christchurch, Dorset, BH23 2XS
Tel: 01202 481 625

Click here for more information on the Cow & Gate Nutriprem range or to download a copy of our Specialist Infant Milks leaflet If parents would like information on feeding thier preterm baby why not tell them to visit the Cow & Gate website hereClick here to view the latest research on preterm infant milk formulas

References

1.BAPEN (2004) British Artificial Nutrition Survey Report British Association for Parenteral and Enteral Nutrition, Redditch
2.Barraclough S (2003) Faltering Growth: A Dietitians Perspective Complete Nutrition Vol 3 No 5 Oct 2003
3.Townsley R & Robinson C (2000) Food for thought: Effective support for families of children who are tube fed Norah Fry Research Centre, Bristol
4.Shaw V & Lawson M (1994) Clinical Paediatric Dietetics BDA Paediatric Group
5.Khair J (2003) Managing home enteral tube feeding for children British Journal of Community Nursing 2003 vol 8 no3
6.Pinelli J & Symington A (2004) Non-nutritive sucking for promoting physiologic stability and nutrition in preterm infants (Cochrane Review) The Cochrane Library, Issue 3 2004