Managing children with stomas - Coloplast

There are several different types of stoma, some
that are continent and others that are not. A
continent stoma can be described as a stoma that
does not involuntarily produce urine or a stool.
For example, continent stomas may require the
child or carer to pass a catheter into the bladder
(via a Mitrofanoff) to drain the urine; there are
no bags or indwelling catheters. The antegrade
continence enema (ACE) is a stoma that allows
the child access to their large bowel so that they
can administer a washout, rather than having to
place any treatments rectally. The needs that
children and their families have in relation to
stoma surgery will vary.
Discussing their options
Although for some children having a stoma is
necessary to maintain their health, others can
have some input into the surgical decisions that
will be made. Children and their families need
to understand why their surgical team is
considering a stoma and they should have
access to information and opportunities to
discuss the treatment options available with the
surgical team. Families should have the
opportunity to discuss the plan with their
medical staff and also with other members of
the team, including the nurse specialist and
play specialist. Discussions with the child’s
school during the planning phase can also be
helpful as this can ensure the child’s smooth
reintegration after surgery.
Understanding stomas
Both children and their parents need to
understand what a stoma is, why it is necessary
and how it will function. It is also important
that the child and their family understand the
difficulties that can be encountered following
surgery, such as problems with surrounding
skin. Nurses and doctors should find out what
children and their parents understand and
ensure that there is agreement and informed
consent. The concept that the stoma may
be for life should be discussed openly, as
some children may believe that it is only a
temporary measure.
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Practical care
Managing children with stomas
Children and their families can have a variety of needs in relation to stoma surgery.
In this article, Caroline Sanders and Lucy Bray discuss some practical advice
Having the opportunity to explore thoughts
and feelings about a stoma before surgery are
important, as these have the potential to impact
on the child’s behaviour and coping
mechanisms afterwards. Giving children the
opportunity to be involved in decisions about
themselves can reduce their levels of anxiety. 1
Preoperative play is integral in trying to share
medical knowledge with the child and family,
and playing and practising with stoma bags and
catheters (if having a continent stoma) is
important, so that coping with the stoma every
day after surgery is not a shock. Education and
information giving should be designed to suit
the child and it is important that different
approaches and methods are used. 2
Children can easily have some choice in the
types of appliances that they will have and they
should be given the chance to practise with
these before surgery. This not only allows the
child the opportunity to explore what it will feel
like but also assesses their dexterity skills, such as
using a two-piece bag or holding catheters. Some
children and their parents are sceptical that the
two-piece adhesive stoma bags will stay in place
and having the opportunity to practise
preoperatively with appliances filled with soaked
cotton wool, for example, can help to build up
their confidence in a particular product and
alleviate worry. Preoperative play can also allow
the nurse to assess skin sensitivity. The
opportunity to meet other children and families
may also be helpful for some families.
This picture has been removed
due to copyright reasons.
Gaining more
control of their
continence can
make children
feel proud of
their stoma and
the increased
flexibility it
affords them in
their life
Caroline Sanders
BSc(Hons) PGD RCN Urology
Nurse Specialist
Lucy Bray BA(Hons)
Nursing MSc Nursing
Studies (Child) Research
Practitioner, Royal
Liverpool Children’s
Hospital, Liverpool
9

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