Download Background hereditary breast cancer, particularly in response to children and young people’s

Using evidence to inform, challenge and advance practice
Issue 1 • March 2014
Hereditary Breast Cancer: Talking to Children
and Young People about risk implications
Background
Breast cancer affects one in nine women
and between 5-10% of all breast cancers
are caused by an inherited gene, which
children have a 50% risk of inheriting if
their parent carries this gene. Men and
women are equally likely to carry the
affected gene. One of the serious issues
however that concerns many women and
their partners is how and when to talk to
their children about hereditary breast
cancer (HBC) and its risk implications.
Many parents want advice and support
from breast care nurses and genetic
counsellors about this issue1,2.
What is the dilemma for parents?
In families affected by, or at risk from
hereditary breast cancer, many parents
struggle to decide how and when to
discuss the condition with their children2.
Parents’ initial instinct is to protect their
children from potentially distressing
information about breast cancer that will
not have implications for them until they
are adults. However secrecy around
illness can seriously disrupt family
life and leave family members feeling
isolated and alone. In some instances
children will blame themselves, or each
other, for what is happening and in the
long-term, family tensions can seriously
erode children and young people’s selfesteem and confidence1.
What does the research show?
Findings from interviewing families and
other studies2,3,4 suggest it is better for
parents to talk to their children about
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hereditary breast cancer, particularly in
response to children and young people’s
questions. This will enable children
and young people to gain insight and
understanding of the risk gradually,
which is less frightening. However,
parents also need to let their children
know they are willing to discuss breast
cancer and its risks with them because
children and young people often worry
about upsetting their parents by asking
difficult questions.
When is the best time to talk?
There is no ‘right time’ but discussions
are part of a process, with children and
young people gradually learning more
information in response to their questions
and as they develop. It is important to be
clear what the child is asking, particularly
if it is thought they may be upset by the
responses.
What to say?
Use language appropriate to the child’s
or young person’s development stage.
Be clear that carrying the genes causing
hereditary breast cancer does not mean
that breast cancer will always occur,
but that it does increase the risk. Avoid
using colloquial language. For example,
do not talk about “boobs” rather than
breasts because these colloquial terms
reduce children’s realisation of the
psychological impact of prophylactic
surgery. Research indicated that some
children focused on genetic testing as
an opportunity for breast enhancement
surgery.
Florence Nightingale School of
Nursing & Midwifery
King’s College London
James Clerk Maxwell Building
Waterloo Campus
57 Waterloo Road
London SE1 8WA
Tel 020 7848 3048
Email [email protected]
What are children of different ages likely
to know about genes and hereditary
conditions4,5?
8-11 years: They have a basic
understanding of hereditary conditions
and that they share characteristics with
parents. They may talk about genes but
not fully understand. Children of this age
usually cope with simple explanations
in response to their questions and are
not easily upset but they may need
reassurance that having an altered gene is
not the same as having cancer. Children
and young people can easily confuse this
so it often needs repeating throughout
development into adulthood.
12 – 14 years: Children of this age group
are beginning to develop more insight
about hereditary conditions, will begin
to recognise that a parent having the
gene may have implications for them,
but will usually cope well if it is explained
that there is only 50% chance of them
having the BRCA gene alteration, even
if their parent carries the gene causing
hereditary breast cancer.
15 – 17 years: They will recognise the
risks to their parent, themselves and
often their future children and can
begin to consider genetic testing. By
this age young people will be learning
about hereditary breast cancer in school
curricula.
Most children are quite pragmatic in
response to genetic risk in families
affected by hereditary breast cancer.
Children and young people said their lives
are focused on developing friendships,
school and their personal interests, and
they do not dwell on the risk.
Key points for practitioners
• Parents want support about how and when to talk to their children about
herditary breast cancer.
• It is important that parents talk to their children as part of a process and
reassure them that they shouldn’t worry about asking difficult questions.
• Parents should use language that is appropriate to the child, or young
person’s developmental stage.
• Parents should be encouraged to take naturally occurring opportunities to
talk to their children where possible.
Practice+ (Print) ISSN 2053-1656 • Practice+ (Online) ISSN 2043-1664
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References
1. Metcalfe A, Werrett J,
Burgess L, Chapman C &
Clifford C (2009) Cancer
Genetic Predisposition:
Information Needs of
Patients Irrespective of
Risk Level. Familial Cancer
8:403–412. DOI: 10.1007/
s10689-009-9256-6.
2. Metcalfe A, Plumridge
G, Coad J, Shanks A, Gill
P (2011) Parents’ and
children’s communication
about genetic risk: qualitative
study learning from families’
experiences. European Journal
Human Genetics Jun;19(6):640-6
doi:10.1038/ejhg.2010.258
3. Metcalfe A, Coad J,
Plumridge G, Gill P,
Farndon (2008). Family
communication between
children and their parents
about inherited genetic
conditions: A meta-synthesis
of the research. European
Journal Human Genetics. 16,
1193-1200
4. Rowland E and Metcalfe
A (2012) Communicating
inherited genetic risk
between parent and child:
A meta-thematic synthesis.
International Journal of Nursing
Studies doi.org/10.1016/j.
ijnurstu.2012.09.002 (Published
online)
5. http://www.
royalmarsden.nhs.uk/
SiteCollectionDocuments/
patient-information/brca.pdf