European Journal of Oncology Nursing 25 (2016) 9e15

Contents lists available at ScienceDirect

European Journal of Oncology Nursing

journal homepage: www.elsevier.com/locate/ejon

Preparing young people for future decision-making about cancer risk

in families affected or at risk from hereditary breast cancer: A
qualitative interview study
Emma Rowland a, Gill Plumridge b, Anna-Marie Considine c, Alison Metcalfe a, *
a
Florence Nightingale Faculty of Nursing and Midwifery, Kings College London, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK
b
Primary Care Clinical Sciences, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK
c
West Midlands Regional Genetics Unit, Birmingham Women's Hospital, Mendelsohn Way, Edgbaston, Birmingham B15 2TG, UK

a r t i c l e i n f o a b s t r a c t

Article history: Purpose: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of devel-
Received 24 March 2016 oping breast cancer with 50% risk of their children inheriting the gene mutation. Many parents nd it
Received in revised form difcult to know when and how to disclose this information to their children and how such disclosure
9 August 2016
might affect their child's future decision-making.
Accepted 18 August 2016
Method: This study explored the communication of genetic risk information in families using qualitative
semi-structured interviews conducted with parents, children (7e11years) and young people (12
Keywords:
e18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded
Breast cancer
Communication
transcripts producing four themes; family communication, perception of cancer risks, risk management
Genetic risk strategies and impact of genetic risk communication in children and young people's decision making.
Mastectomy Results: Twenty-seven individuals from 11 families took part, recruited through purposive sampling
Children techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their
Young people children's future. As a result, parents with hereditary breast cancer disclosed limited information about
Genetic testing the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery
BRCA on body image. This had implications to children and young people's perceptions of prophylactic pro-
cedures, which were already inuenced by cultural understandings of the 'desirable body' and increasing
acceptance and proliferation cosmetic surgery.
Conclusion: Lack of risk management information and the acculturation of cosmetic surgery combined to
limit children and young people's understanding of the impact of hereditary breast cancer; reducing
their ability to actualise the physiological, psychological and emotional consequences of surgery.
2016 Published by Elsevier Ltd.

1. Introduction cancer is approximately 80% (Easton et al., 1995; Sharff et al., 2011)
compared with the 12.5% in the general population (Cancer
Breast cancers caused by a BRCA germ line mutation, make-up Research UK, 2016). Health professionals advocate that the per-
5e10% of all breast and ovarian cancer diagnoses (Easton et al., son carrying the gene mutation communicates genetic risk infor-
1995; Hallowell and Lawton, 2002; Risch, 2001; Stratton et al., mation to their relatives so that they may engage in prophylactic
1997). Specic or dened rst degree relatives of the diagnosed measures to reduce their risk. Many individuals however, nd it
individual have a 50% risk of carrying the autosomal dominant difcult to know when, what and how to disclose this information,
BRCA gene mutation (Sharff et al., 2011). If female relatives carry especially to their children (<18 years) (d'Agincourt-Canning, 2006,
the mutated BRCA gene, their life time risk of developing breast Kenen et al., 2004, 2006; Tercyak et al., 2002, Tercyak et al., 2000).
Challenges arise due to feelings of guilt and anxiety, limited un-
derstanding of the disease (Kenen et al., 2004; Tercyak et al., 2002,
* Corresponding author.
2007, 2001) and grief caused by personal experiences of cancer or
E-mail addresses: [email protected] (E. Rowland), [email protected]. cancer related deaths within the family (Lillie et al., 2011; Metcalfe
uk (G. Plumridge), [email protected] (A.-M. Considine), alison. et al., 2011).
[email protected] (A. Metcalfe).

http://dx.doi.org/10.1016/j.ejon.2016.08.006
1462-3889/ 2016 Published by Elsevier Ltd.
10 E. Rowland et al. / European Journal of Oncology Nursing 25 (2016) 9e15

Despite growing evidence demonstrating the importance of attended clinic in the last two years and where a known BRCA
communicating genetic risk information to children (Metcalfe et al., mutation was present, to participate in the study. Snowballing
2011; Cavanagh et al., 2010; Forrest Keenan et al., 2009, Kenen et al., techniques were also conducted with recruited families, who rec-
2004; Klitzman et al., 2007), studies analysing family communi- ommended other families they were acquainted with to the study.
cation about hereditary breast cancer, focus on exchanges between Exclusions were made if potential participants were; psycholog-
parents and their adult children (Tercyak et al., 2000, 2001, 2002, ically vulnerable, too young (<5 years old) or if parents had not
2007). There is therefore a lack of studies that explore the discussed hereditary breast cancer with their children. Recruitment
communication of genetic risk information (diagnosis, disease risk of participants ceased on reaching data saturation (Bowen, 2008;
and risk management strategies) between parents and their chil- Guest et al., 2006; Pope et al., 2000). The West Midlands
dren (<18 years) (Peshkin et al., 2010; Metcalfe et al., 2009). This Research Ethics Committee approved the study (REC reference
study addresses the gaps in this evidence base. number 11/WM/0080).
Research with other genetic conditions has shown that the Written consent of parents was required before asking children
prospect of communicating genetic risk information is daunting and young people under 16 years for their written assent to
and overwhelming for parents (Cavanagh et al., 2010; Etchegary participating, with all participants having several days in which to
and Fowler, 2008; Metcalfe et al., 2008a; Klitzman et al., 2007), change their minds. Assent and consent of all participants was
with many feeling isolated and unsupported in this process due to a rechecked immediately prior to interview and it was explained to
lack of available evidenceebased resources (McConkie-Rosell et al., children and young people that they still did not have to take part if
2009; Rowland and Metcalfe, 2013; Sharff et al., 2011). They they did not wish to. Several different age appropriate information
therefore require advice, guidance and support from health pro- sheets and assent forms co-designed and tested with children and
fessionals. As hereditary breast cancer is adult onset and gene young people were used. Continued assent was checked during the
penetrance is less than 100%, meaning that carrying an affected interview, and all participants understood that they could say if
gene does not necessarily result in the development of cancer, they wished to stop the interview at any time. Semi-structured
parents are often uncertain whether to discuss risk information interviews were undertaken by two researchers (AM and GP) in
with their children or wait until they become adults. Parents who participants' homes between December 2011 and March 2012. All
delayed disclosure however, continued to struggle to nd the right the families had one person, the mother, who had tested positive
time to disclose genetic risk information (Kenen et al., 2004; Lillie for a BRCA mutation and all their children were at risk until they
et al., 2011). Delayed disclosure prevented children and young could undergo genetic testing themselves, which is not until a
people from engaging in the necessary preventative measures or minimum of 18years old. Interviews were conducted separately
screening processes required for early detection. with parents and their children or young people unless participants
Whilst, it is unclear whether there are benets for engaging in specically wanted to be interviewed together. Two pairs of siblings
early open communication in families affected by hereditary breast requested to be interviewed together, however no children or
cancer, research with other genetic conditions has shown that open young people asked to be interviewed with their parents. An
communication of genetic risk information improves children's interview schedule was used to guide the researcher's questions
self-esteem, increases family cohesion and enhances reproductive and child-centred methodologies were used to engage the children
decision making (Fanos et al., 2001; Plumridge et al., 2011; Sharff and young people in the research (O'Kane, 2000; Punch, 2000,
et al., 2011; Sobel and Cowan, 2000). Increasing their awareness 2002).
about the range of options, helps young people manage their All interviews were recorded using encrypted digital dictation
thoughts and feelings about the risks involved. In contrast, poor and transcribed verbatim. Transcripts were read and re-read
disclosure can lead to lowered self-esteem in young people, allowing the research team (AM, GP and ER) to become familiar
resulting in risky behaviours such as self-harm and attempted with, and observe patterns in the data (Braun and Clarke, 2006;
suicide (Forrest Keenan et al., 2009). Fereday and Muir-Cochrane, 2006; Pope et al., 2000). Transcripts
With a growing range of risk reducing strategies increasingly were inputted into ATLAS Ti. 6.2.27 (Friese, 2012) for data man-
becoming available eg. chemoprevention and screening for early agement and transcripts were independently coded by one
detection; young people are likely to have a range of options researcher (ER) and veried by a second (AM). Codes were pro-
available to them in adulthood, and young women will need to duced inductively (Boyatzis, 1998; Patton, 1990; Strauss and Corbin,
make decisions about whether they use the contraceptive pill, 1998; Thomas, 2006) as they emerged from the data and deduc-
when they know they are at a higher risk of developing BRCA tively (Boyatzis, 1998; Crabtree and Miller, 1999; Hayes, 1997)
related cancers. drawing on knowledge and experience from previously conducted
This study aimed to ask what are the experiences of parents, research (Metcalfe et al., 2011). Family communication models;
children and young people when discussing genetic risk in families family systems theory (Segrin and Flora, 2005; Spey, 1999), Role
affected by or at risk from a BRCA gene mutation, and how does the Theory (Yerby et al., 1995) and Family Life Course Theory (Cooper,
information shared impact on children and young peoples views 1999) aided the coding process. Codes were discussed iteratively
about their future risk. and denitive codes applied to all interview transcripts. Codes were
translated into four themes, which were reviewed and rened by
2. Methods two researchers (AM and ER) (Braun and Clarke, 2006; Fereday and
Muir-Cochrane, 2006; Joffe and Yardley, 2004).
Methodologically driven by grounded theory (Birks and Mills, Any names or potentially identifying information is removed
2011; Bryant and Charmaz, 2010; Denzin and Lincoln, 2005; from the quotes to protect condentiality, and specic ages of
Glaser and Strauss, 1967; Strauss and Corbin, 1994, 1998), a pur- children are not included for the same reason.
posive sample of families affected or at risk from a BRCA gene
mutation were identied and recruited to the study via a Regional 3. Results
Genetics Unit in the UK. Health professionals (nurses, genetic
counsellors and clinical leads) were provided with recruitment Eleven families with mothers (n 10) or a father (n 1) affected
letters and information sheets and asked to invite families; parents, by a BRCA mutation participated in the study. This equated to 27
children (5e12 years) and young people (13e18 years), who had participants; 14 parents and 13 children and young people, with
 E. Rowland et al. / European Journal of Oncology Nursing 25 (2016) 9e15 11

children and young people between 10 and 21 years of age. No level of risk of carrying the gene mutation as their daughters. This
attrition occurred within the family members volunteering to may be because in their consultations genetic counsellors tend to
participate, however there were family members who chose not to emphasise the female cancer risk associated with the BRCA 1 and
participate in the research. Reasons for non-participation included; BRCA 2 gene mutations and de-emphasise the risk to male carriers
too young to participate (1), hereditary breast cancer had not yet (Genetic counsellor A: personal communication, Sept, 2012). Dis-
been disclosed, or they had limited information of the disease (4), cussions with genetic counsellors may therefore have led mothers
choose not to participate (7) or were unavailable during the data to believe that their sons were not at risk. Additionally, mothers
collection period (1). provided their daughters with more genetic risk information
The themes structure the reported ndings; (1) family because they were more anxious about their susceptibility to breast
communication of risk information, (2) selective communication of cancer due to their developing bodies.
risk information, (3) children and young people's understandings of
[My daughter] is starting to develop now because she is ten and a
genetic risk information and (4) implications for future decision
half, and she's had a lump she said to me one day mummy, e just
making.
feel this for me I felt her boob and it was rock hard, of course
alarm bells immediately right ok we'll go to the doctors and see
4. Findings
what she says and I'm thinking please no, no, no, not another one
[family member affected by breast cancer]
1. Family communication of risk information
(Mother with BRCA gene mutation affected by breast cancer of two
Mothers affected or at risk of BRCA gene mutation predomi- children <12 years)
nately disclosed genetic risk information to their children, in the
I've just had my hysterectomy and I've done everything I can to
home, typically in the children's bedroom. Where siblings were of
prevent this cancer coming back again, my anxieties are not
similar ages, gender and personalities disclosure took place
nished with, because, obviously, I look at [my daughter], you
simultaneously. When siblings were of different genders and/or of
know, my fears are all about her really
larger age gaps, information was disclosed individually allowing
information to be tailored to the child or young person's needs. (Mother with BRCA gene mutation affected by cancer of one child
Information disclosed fell into four age categories; 8e11, 12e14, and two young people < 16 years)
15e17 and > 18 years. In the majority of families with children <11
years old, information focused on events that the child would
witness for example reasons for hospitalisation, which included Mothers were also selective about the communication of risk
discussions surrounding a family gene and breast cancer diagnosis, management decision-making. Mothers avoided disclosing infor-
(prophylactic) mastectomy and/or breast reconstruction. For this mation about the psychological impacts of prophylactic procedures
age group parents often used simplistic language to describe breast on their body image, self-esteem, and emotional well-being. Many
cancer; poorly boobs, poorly tummy, cancer treatments were; of the women interviewed had opted for prophylactic surgery to
magic medicine and prophylactic procedures and reconstructive minimise their risk of developing breast cancer. Whilst reducing
surgeries were; new boobies or boob job. Parents perceived this the risk, the removal and reconstruction of the breast(s) was highly
language not too babyish but sufciently informative, allowing emotive for women, impacting on both their perceived body image
children to grasp the key concepts of the disease and risk man- and gendered identities. Some women talked favourably about
agement procedures without causing fear. their reconstructed breasts following bilateral mastectomy because
At 12e14 years old disclosure centred on the hereditary nature they were much perkier, with one woman demonstrating her
of the BRCA gene mutation and parents' risk rather than discussing satisfaction with her altered body image by stating the weirdest
the young person's own risk. By 15e17 years old, young people part is when you take your bra off, they don't fall down, [laughter]
were considered adequately mature to cope with and understand they just stay there.
the potential risk of breast cancer to themselves and were given Other women however, struggled to come to terms with their
more information about risk management strategies. At 18 years post-surgical body image. This led a minority of women wishing
old, discussions focussed on genetic testing and the implications to that they had delayed reconstructive procedures, believing that
the young person's future off-spring. they should have given themselves more time to contemplate the
Only two families decided not to communicate genetic risk in- psychological and emotional impacts that surgery might have on
formation to their children. In the rst family, the parents felt that their self-esteem, relationships, body image and gendered identi-
because their son's breast cancer risk was low, disclosure would ties. Interestingly, despite their role in reproduction, the removal of
cause unnecessary upset. The parents stated that they would women's ovaries did not appear to have the same psychological and
disclose genetic risk information when he reached adolescence. In emotional impact as breasts. This may be because the majority of
the second family, parents thought their children did not want to women participating in the study had already had their families
know as they did not ask questions. and or had gone through (early) menopause due to the side-effects
of cancer treatments and therefore were not planning to have more
2. Selective communication of risk information children. Furthermore, the ovaries are hidden within the body and
therefore women may have less emotional attachment to them.
In the majority of families, mothers disclosed their own risk of I think the breasts are a little bit more, you know, in the forefront,
breast cancer with their children, but often avoided disclosing in- because they are quite, you know they're out. I think it's because
formation about their child's risk of hereditary breast cancer they are outside the body it's visible, you know your ovaries and
because they did not want to frighten them. Genetic risk infor- bits and pieces, when they take it from inside your body, it's not
mation was therefore carefully selected to shield children from but your breasts, very much part of a woman
perceived harmful information.
Genetic risk information was also selectively communicated (Mother who carries BRCA gene mutation with four young people
according to the child's gender, with mothers disclosing less ge- >13 years)
netic risk information to their sons, despite them sharing the same
12 E. Rowland et al. / European Journal of Oncology Nursing 25 (2016) 9e15

[sisters] going to but it hasn't affected me as much as it would them

Due to the impacts on their emotional and psychological well- probably
being, many women wanted to protect their children from the
(At risk young male >13 years of mother is BRCA gene mutation
impacts of their surgery and risk management decisions. Many
carrier e no cancer)
mothers therefore used jokes and humour as a defence mechanism
to play-down their emotions and conceal their lowered self-esteem
from their children. Whilst some mothers were successful in pro- Furthermore, in response to their parent's cautious or partial
tecting their children, some young people were aware that their disclosures, some, children and young people developed a blase 
mothers were putting on a brave face. This comprehension did attitude towards surgical procedures. This was compounded by
not however, encourage communication because children and children and young people's cultural understandings of cosmetic
young people were afraid that asking questions would upset their procedures with breast augmentation normalised by media images
mothers further. portraying surgically enhanced celebrities. This lead children and
YP1: Like she tried to make it look like it didn't affect her young people to not differentiate between breast reconstruction for
prophylactic reasons or for cosmetic purposes and was highlighted
YP2: She made like e not a joke out of it but she made it seem like by a father who stated:
everything was ok, like she didn't ever show us how she really felt
about it, even when it did really have a bad effect on her. Like we They are aware that [their mother] had surgery, but you know,
know how she felt about it but at the time, [but] she just clammed unless you told them what sort of surgery, it probably wouldn't
up register. I mean people are on telly having breast enlargements
constantly aren't they? Everything they watch nowadays, every-
(At risk young people >13 years, mother has BRCA gene mutation body's got surgically enhanced breasts and so they're aware of
and has been affected by breast cancer) things and that's normal anyway isn't it now in life?

(Father whose wife has BRCA gene mutation but no cancer, has one
Despite mothers' anxieties about undertaking major surgical child and two young people)
procedures, they often did not communicate to their children
about the surgical risks associated with prophylactic procedures 4. Implication for decision making
and the implications to their health such as; increased osteoporosis,
early menopause, depression, poor health, infections, scarring, pain Selective genetic risk information in conjunction with the nor-
and fatigue. Instead, mothers talked positively about (prophylactic) malisation of cosmetic surgery impacted on children and young
mastectomies and breast reconstruction, often referring to the people's attitudes towards breast cancer and risk management
procedures as a boob job and emphasising the benets of surgery procedures. Some young female participants wanted genetic
for reducing cancer risk. Some mothers discussed the aesthetic testing as soon as possible, perceiving it meant that they could have
benets of breast reconstruction, for example their ability to choose free breast augmentation.
their breast size, which they were often choosing for the best sur-
With the double mastectomy, it's a free boob job basically on the
gical outcomes rather than cosmetic reasons. However this was not
NHS because you get to choose your consultant; you can choose
always claried with the children.
your size e bigger or smaller, whatever. And that is the reason why I
Positive discussions were conducted to reduce children and
wanted to be tested quicker, because I thought If I've got it, I can
young peoples' anxiety and fear surrounding cancer, which may
have my boob job as well and I don't have to pay for it, but then if I
have developed due to witnessing multiple cancer related deaths in
don't have it I can still have it anyway
the family, from an early age. Selective communication however,
did not seem to reduce children and young people's anxiety. On the (At risk young female >13 years, Mum tested positive for BRCA gene
contrary, eld notes showed that children and young people mutation but unaffected by cancer)
participating in this research appeared more upset and frightened
by the disclosure of cancer risk than children and young people
with other inherited genetic conditions. Withholding or down playing genetic risk information therefore
affected young people's risk management decision making as they
3. Children and young people's understanding of genetic risk were unaware of the implications of the disease and prophylactic
information surgery on their body, gendered identities and emotional and
psychological well-being. One young female participant demon-
In attempting to protect children and young people from the strated she understood the importance of monitoring and
emotional and psychological impacts of breast cancer and (pro- screening as a risk management strategy but she appeared frus-
phylactic) breast surgeries, parents inadvertently inhibited their trated that the extra vigilance required will prevent her from
child's understanding of the risk caused by the BRCA gene muta- having cosmetic surgery to enhance her body aesthetic.
tion. Gendered disclosure lead several young males to perceive I've got a friend whose just had a boob job and I was like I really
their risk of the BRCA gene mutation was minimal, despite the want to have it done, I can't have it done now because there's a
gene's presence increasing their risk of other types of cancer barrier my mum said if you've got silicone it's like a barrier
including prostate, pancreatic and male breast cancer, as well as and you won't be able to feel a lump but other than that, I don't
having implications for their future offspring. know it's just a barrier it's annoying
YP: I understand [BRCA mutation] doesn't affect males that (At risk young female >13 years Mum affected by breast cancer)
much, it like only gives them like a marginal chance more, whereas
females it gives them a massive chance of getting [breast cancer].
So I couldn't see the interest it's not something I'd get worried Some parents observed that young people from aged 15 years
about, me myself Obviously mum's going to, auntie's going to, stopped focusing on themselves and their body image and became
more erudite and knowledgeable about the BRCA gene mutation. At
 E. Rowland et al. / European Journal of Oncology Nursing 25 (2016) 9e15 13

this time young people began to realise the potential implications understanding of breast reconstruction was inuenced by cosmetic
of breast cancer risk for their own psychological wellbeing, procedures undertaken by celebrities to create a desirably curva-
particularly to their self-esteem and body condence. This insight ceous body. The over exposure of cosmetic surgery in the media
was normally actualised through young people's reections of their (Featherstone, 1982; Holliday and Taylor, 2006; Morgan, 1991)
mothers' experiences of breast cancer and their risk management caused children and young people to perceive that a surgically
decisions. enhanced body would improve self-esteem and body condence.
They did not therefore contemplate that mastectomy and breast
going on the beach and wearing a bikini, I think that was one of
reconstructive surgery could induce the opposite, or that there
the factors with my mum, like you know [in choosing] to have a
might be other options rather than surgery. However this group is
reconstruction, and I know that that would affect me as well
potentially biased because most of the participating mothers had or
because that's when it will knock my condence and stuff if that
were awaiting mastectomies and no families came forward where
is going to happen, I hope it happens later on when I've got a family
the women at risk or affected were not taking a surgical option; this
and I'm settled down and stuff.
possibly delayed the need for these parents to talk to their children
(At risk young female >16 years mother had breast cancer) and therefore they did not t our study criteria. By contrast mothers
who were undergoing mastectomy had little choice but to explain
to their children what was happening. Future studies should recruit
Greater knowledge of the BRCA mutation also caused young
this group, especially as there are more studies now underway to
people to consider the impact that breast cancer risk might have on
look at risk-reduction via chemoprevention.
their future relationships and subsequently their future offspring.
Finally, the normalisation of cosmetic surgery and an avoidance
They therefore wanted to be genetically tested to make informed
of open communication about genetic risk caused children to
reproductive decisions:
misunderstand the full implications of risk management decision
She said. I want to be tested; because I want children, and I want making. This led children and young people (<15 years) to desire
to know. I don't want to be passing this onto my kids. That was her genetic testing to establish whether they were entitled to a free
main concern It wasn't about herself was it? It was about having boob job rather than embark on risk management strategies.
children she's thinking ahead about having children. Kenen et al. (2004) suggested that once a child formulates a view
about a disease it is often difcult to challenge (Kenen et al., 2004).
(Mother who carries BRCA gene mutation but unaffected by cancer Further research is required to ascertain whether young people's
with one young person >16 years) views do change as they mature or whether there is a need for
parents provide more accurate and developmentally appropriate
Mastectomy was the main focus of discussions about risk pre- genetic risk information to their children to prevent them from
vention and parents did not report discussing with their children creating false assumptions about their breast cancer risk and the
other options of chemoprevention or early detection through surgical risks associated with prophylactic procedures.
screening, the emphasis was on reducing the risk to the lowest In addition to the novel ndings above, this study's ndings
possible via surgery. were analogous with previously conducted research with families
affected or at risk from other inherited genetic conditions (Easton
et al., 1995; Metcalfe et al., 2008a,b; Rowland and Metcalfe,
5. Discussion 2013). All family members believed that it was the parents' re-
sponsibility to communicate inherited genetic risk information
Presenting original insights into how parents communicate (Etchegary and Fowler, 2008; Forrest Keenan et al., 2009; Klitzman
genetic risk information to their children, the research exposes et al., 2007; Metcalfe et al., 2011). Communication was inherently
mother's anxieties about the risks associated with the BRCA gene gendered, with mothers taking primary responsibility for disclo-
mutation. Parents tried to be open about the risks but feared up- sure (Forrest Keenan et al., 2009; McConkie-Rosell et al., 2009;
setting their children and causing them worry, when they did not Plumridge et al., 2010) and fathers provided children with
feel fully prepared to deal with the emotional consequences for the emotional support and reassurance when their mothers were in
children or themselves. Whilst parental risk was discussed with hospital receiving cancer treatments or undergoing surgical pro-
children, mothers were less likely to discuss the surgical risks cedures (Klitzman et al., 2007).
associated with (prophylactic) mastectomy and reconstructive Genetic risk information is usually disclosed around two time
surgeries and the impacts to their psychological well-being. Matloff frames which was also observed in this study, relating to the life-
et al. (2009) demonstrated that women affected by a BRCA gene cycle and disease trajectory/medical course (Klitzman et al.,
mutation found their altered body grotesque (Matloff et al., 2007). Mothers disclosed their own personal risk to their children
2009). Mothers in this research struggled to come to terms with more or less straight away following their cancer diagnosis (Forrest
their altered body image often resulting in poor self-esteem and et al., 2003, 2006), after genetic testing or when undertaking breast
body condence. By avoiding risk communication parents thought reconstructive surgery, particularly to young people. However
that they were protecting their children from harmful information those parents with younger children who did not have a cancer
however, avoiding or delaying disclosure had three profound ef- diagnosis said they would wait until their child was old enough to
fects on children and young people's perceptions of risk and to their understand.
risk management decision-making. Children and young people at risk of a BRCA gene mutation,
First, down-playing surgical risk lead to children and young appreciated disclosure from family members however, in addition
people to develop a blase attitude towards prophylactic procedures they wanted an opportunity to speak with health professionals
and breast reconstruction, preventing them from understanding (Klitzman et al., 2007; McConkie-Rosell et al., 2009; Metcalfe et al.,
that these procedures are major surgeries that carry risks. Second, 2011). Children and young people sought information from the
over-emphasising the benets of prophylactic surgical procedures internet (McConkie-Rosell et al., 2009; Plumridge et al., 2010), TV
prevented children and young people from understanding that programmes (Forrest Keenan et al., 2009), leaets and books to
breast reconstruction is not the same as breast augmentation for supplement the information provided by their parents. In our study
cosmetic reasons. Furthermore children and young people's some young people also used this additional information to educate
14 E. Rowland et al. / European Journal of Oncology Nursing 25 (2016) 9e15

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Conict of interest
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Acknowledgements 40 Years of age diagnosed with breast Cancer and carrying a BRCA1 or BRCA2
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Klitzman, R., Thorne, D., Williamson, J., Chung, W., Marder, K., 2007. Disclosures of
Professor Metcalfe, Dr Rowland, Ms Plumridge and Ms Anna Huntington Disease risk within families: patterns of decision-making and im-
Considine would like to give a special thanks to these families who plications. Am. J. Med. Genet. Part A 143 (16), 1835e1849.
gave up their time to participate in the study. They would also like Lillie, A.K., Clifford, C., Metcalfe, A., 2011. Caring for families with a family history of
cancer: why concerns about genetic predisposition are missing from the
to acknowledge the support of the Breast Cancer Campaign for
palliative agenda. Palliat. Med. 25 (2), 117e124.
funding the research (reference number 2010NovSP). Finally the Matloff, E.T., Barnett, R.E., Bober, S.L., 2009. Unraveling the next chapter: sexual
authors would also like to thank Mr Jonathan Hoffman, Research development, body image, and sexual functioning in female BRCA carriers.
co-ordinator at the West Midlands Regional Genetics Unit Cancer J. 15 (1), 15e18. http://dx.doi.org/10.1097/
PPO.1090b1013e31819585f31819581.
(WMRGU) for his assistance in identifying families who could be McConkie-Rosell, A., Melvin, E.C., Spiridigliozzi, G.A., 2009. Genetic risk commu-
approached for recruitment to this study. nication: experiences of adolescent girls and young women from families with
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Metcalfe, A., Plumridge, G., Coad, J., Shanks, A., Gill, P., 2009. Children, Young People
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