Managing children with stomas - Coloplast

Practical care
How to manage at home
All children and families manage living with a stoma
slightly differently and adapt their lives in different ways.
Having a stoma does not need to dominate family life, but
this often needs negotiation within families. Parents and
children need to be organised and ensure that supplies are
available wherever they may be needed. Many families
ensure that there are supplies of bags or catheters in other
family members’ houses, the family car and at any close
friends’ houses. Many children use attractive bags and
pencil cases in which to store their catheter or bag supplies.
These look inconspicuous and avoid awkward questions.
The child needs to be equipped, where possible, with a
range of skills or a ‘story’ that will help them manage
unexpected events, such as a quick trip to the toilet in
school, or a leaking bag. Often, it is the unexpected event
of a bag leaking and questions from family or peers that
children are ill-prepared for and may struggle to cope with.
This can also be true for parents. I recall a parent telling me
how a stranger commented on the fact she took her
daughter to the disabled toilet to change her appliance.
The stranger remarked that there was ‘nothing wrong’
with the child and she should wait in the toilet queue.
Often faced with such prejudice, parents can feel
embarrassed or defensive. Therefore, helping to build on
existing coping skills of children and parents is important.
How to manage at school
Some children will be open with their friends and
classmates about their stoma but other children will keep
the stoma a secret and only talk about it with their parents.
In some cases, a whole class has been told about a child’s
stoma as a result of over-zealous physical contact in the
playground. The decision to tell classmates should be
decided by the family and the child, and any decision
supported by the school.
Other issues in school which can cause unwanted
attention can focus on using the medical room to change
bags or going to the toilet or changing before games/PE. As
everyone is different, this should be negotiated with the
school on an individual basis. Every Child Matters and
Including Me 3 are examples of documents that aim to
support children in education and are published by the
Department of Health and the Council for Disabled
Children respectively. Including Me explores managing
complex health needs in schools and early years settings
and is a guide for local authorities, schools and health
Key points
● Children and their parents need to understand
what a stoma is, why it is necessary, how it will
function and how to cope if problems occur.
● Parents and children need to be organised and
ensure that supplies are available wherever they
may be needed – not just at home.
providers. It includes practical advice and solutions on
how to ensure that children with complex health needs get
the support they need to attend schools and early years
settings, so that they can take part in all activities.
Often, children have access to a classroom assistant with
special training to manage a stoma and/or catheters. Any
training for carers can be arranged either via the school’s
health service or nursing services attached to the treatment
centre, the community children’s nursing teams or local
continence services. There should be a healthcare plan
identifying how to manage the stoma, who to contact in a
crisis, and a plan of where to store and dispose of the
equipment. 2 There should also be agreement as to what
school activities will be participated in and strategies to
encourage the child’s involvement and maximise their
participation. These guidelines should also include
management away from the school, such as school trips.
Fostering a positive body image
It is important that conversations take place within the
family regarding how children and young people feel
about themselves, and parents should encourage their
children to think that although they have a stoma, it only
makes them different in one way. Many children have
things that are different about them.
Having a stoma formed can often mean that the child or
young person gains more control of their continence and
no longer has accidents. This aspect can make children feel
proud of their stoma and the increased flexibility and
governance it should afford them in their life. It is
important that the child is appropriately involved in the
decision to have the stoma formed, as feelings of control
and self-esteem may also relate to feeling valued.
Peer groups can be important for children and young
people and can offer support that is not available from
parents/carers or professionals. 2 These may be actual or
virtual. There are many internet forums that relate to
having a stoma, though many of these are US based.
Normal parental caution with chat rooms applies.
Developing independence
As children grow up it is a normal part of development for
them to seek increased independence from the family.
Often, families can find it hard to extend this normal
development to care of the stoma. Every family and child
is different and decisions regarding independence need to
be made within the family unit. As the stoma may be
permanent for the child, it is important that they manage
as much of the care of it as their age and ability allows. The
kinds of support that they need will change as they grow
older, from physical management and help in applying
bags and inserting catheters, to more emotional support
and awareness that a parent or carer is there if needed ■
References
1. Margolis JO, Ginsberg B, Dear GL et al. Paediatric preoperative teaching: effects
at induction and postoperatively. Paediatr Anaesth 2005; 8: 17–23.
2. Bray L, Sanders C. Preparing children and young people for stoma surgery.
Paediatric Nursing 2006; 18: 33–37.
3. www.standards.dfes.gov.uk/eyfs/resources/downloads/including_me.pdf (last
accessed 12/09/07)
10 CHARTER STOMA CARE ISSUE 29