Autumn 2011 Issue - University of Central Lancashire

10 Feature Articles
machine). Advances in technology now
means a ventilator can be strapped to back
of a baby stroller and the child and family is
much more mobile. Children who, in the
past, would have been nursed in hospital for
years can now be cared for at home. That’s
a fantastic advance, as it means children are
not growing up in hospital. The place of care
has been shifted into the family home which
has many advantages for the children but
research needs to be undertaken to ensure
that we are not just sweeping chronically
sick and highly dependent children just out
of sight into homes. We need to know the
impact of caring for children at home on
their families. Much of the research I do
focuses on the notion of care being ‘Better
at Home’.
Sometimes people think that working with
children who are receiving palliative care, or
have life-limiting illnesses or profound
disability would be sad and gloomy and
sometimes it is. However, it is actually some
of the most interesting and stimulating work
that you could do because the children and
their families are brilliant. For example, the
image of a child on life support machine
conjures up an image of a very sick child
who requires the researcher to be very
gentle. In reality interviews can be different
with the child on the ventilator adding to the
challenge of undertaking the interview by
throwing paper aeroplanes around the
room. Children, regardless of whether or not
they are ill, can be mischievous. Undertaking
workshops with children is really fulfilling
and I need my wits about me. Whoever said
children were vulnerable hasn’t met some of
the children I have interviewed!
I see you have an NHS report – is this
something you have been involved
with producing?
Yes, in 2009 a colleague of mine at the
University of West of England and I, were
commissioned by the Department of Health
to examine Community Children’s Nursing
Service provision in England. We ran a series
of arts-based research workshops with
children, families and professionals in Spring
and Autumn 2009. The “NHS at Home”
Community Children’s Nursing Services
report, based on our research, was finally
published in March 2011 and launched at the
Royal College of Nursing on 26th April 2011.
This report is really significant for families as
the government has recognised that if
children are to be nursed at home then
community children’s nurses are the absolute
front line troops to provide and co-ordinate
that care. So it feels like quite a victory to
have the need for skilled support and care by
children’s nurses recognised as well as the
contribution of unqualified carers.
Community Children’s Nurses do a mix of
hands on care in the home as well as
providing education to the child and family
about how to manage the child’s care. They
also train and manage the unqualified carers
who go into the home to provide some
aspects of ongoing care.
So you would have carers who knew
about the things like the ventilators or
other equipment that the children
rely upon?
Yes, at the moment unqualified carers are
trained specifically to meet the needs of
individual children which means that their
skill set matches that child. If the child
deteriorated or they developed another
symptom or disease then they would need
additional specific training.
Do the parents have a certain element of
training to support the children?
Yes, all parents are trained to meet their
child’s care needs including complicated
drug regimes or managing their child’s
ventilation. For children requiring long term
ventilation this will include how to manage
the machine, how to ‘bag the child’ so as to
maintain mechanical respiratory support if
the ventilator stops.
Is it the case that almost every child is
different in terms of needs and support?
Yes, partly because any child’s reaction to
either trauma or illness or injury, or birth
defect is slightly different but also their
families are different and so what might be
possible in one family becomes more
challenging within a different family.
As children grow up their response to their
condition or illness can vary. Some families
find it fairly easy to manage their child’s
severe epilepsy when their child is small,
because they can hold them gently whilst they
are having a ‘fit’. For a bigger child it becomes
more difficult to make them safe. Every child
and every family is different and they need
tailored support from children’s nurses.
The transition from childhood into
adulthood - is that often a difficult
transition?
It is often huge as adult services are so
different to children’s services. Illnesses that
are relatively common are relatively easy to
manage (e.g. children’s diabetes or
children’s asthma) but even then transition
can be challenging. Children will have
grown up with the same professionals in a
setting they know well and understand.
Psychologically and in many other ways
transition can be huge. It’s one of the areas
that I and other colleagues have been
working on for a long time and it’s still not
perfect. The most effective transitions are
ones where there is careful preparation and
when the child and their family have the
opportunity to take time to become
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Children who, in the past, would have been nursed
in hospital for years can now be cared for at home.
That’s a fantastic advance, as it means children are
not growing up in hospital.