Experiences of cancer-related fertility concerns among
people of South Asian and White origin:
Summary for professionals
Introduction nurses, social workers, scientists,
This is a summary of a qualitative research psychologists, counsellors, youth workers,
project that explored the personal impact commissioners and representatives from
of cancer treatment on fertility, within the third sector organisations (n=33).
context of a multi-cultural society.
Our discussions with professionals helped
Survival rates are improving, leaving us explore their views on taking care of
increasing numbers living with the long people affected by cancer and, more
term consequences of cancer treatments. specifically, their responses and
Actual or potential fertility impairment experiences of offering care to patients
can be one of those consequences and can, from minority ethnic backgrounds. These
for some, affect recovery and well-being. conversations also enabled us to
Professionals, however, struggle to offer understand how different services and
appropriate support. sectors work in relation to each other.
We interviewed 47 men and women from Diagnosis, treatment and follow-up
White (n=26) and South Asian (n=21) The potential risk to fertility caused by a
backgrounds, aged between 18 and 40 particular cancer treatment is usually
years old, who had lymphoma, sarcoma, discussed during initial consultations
testicular or breast cancers. We were about diagnosis. Doctors, however,
especially interested in how participants cannot be certain about risks and are not
made decisions about their treatment in able to give definite answers to individual
the light of its potential impact on their patients.
fertility, what kind of information and
support they received over time from Some patients found it difficult to
health and social care professionals and understand why they were not given more
the role played by family and friends. definite information and were troubled.
Others on the other hand found that the
By recruiting a culturally diverse sample, uncertainty afforded them hope.
we hoped to explore when ethnicity made Some professionals did not engage with
a difference to people’s experience and the long term social and emotional
when it did not. consequences of infertility, seeing it
instead as a physical state with little
We also conducted focus group meaning beyond the capacity to
discussions and interviews with reproduce. This led to missed
professionals involved in cancer and opportunities for revisiting information,
fertility services. These included doctors,
discussing coping strategies and/or This would, they believe, have enhanced
offering psycho-social interventions. their present and future abilities to cope.
Referrals to generic rather than specialist Professionals only called on ethnicity-
therapeutic or other psycho-social services based explanations when talking about
could on occasion prove counter South Asian or other minority groups,
productive. One of our participants who often assuming their homogeneity and
was struggling with the prospect of not conflating ethnicity, culture and religion.
being able to have children felt her Inappropriate stereotypes could therefore
concerns were not addressed, as the emerge, leading to some professionals
counsellor chose instead to focus on her interpreting similar responses very
experiences of having cancer. differently according to the ethnic
background of the patient.
What did the professionals see as key
influences? While acknowledging that some
Overall, professionals saw gender, age or professionals took a more nuanced view -
life course as having more influence on engaging with the complexity of
people’s experiences than ethnicity, individuals’ experiences in which religion,
culture or religion. Those at the younger culture or ethnic origin may play their part
end, for example, were perceived to be – we provide a summary of the most
less affected unless in ‘serious’ common stereotypes.
relationships or actively considering
parenthood. Women undergoing Some professionals perceived ‘South
treatment when close to menopause were Asian’ men as having particular
seen as especially vulnerable to distress. difficulties with masturbation when
banking sperm, because of assumed
Women, in general, were thought to face a religious prohibitions within Islam. None
greater emotional burden when dealing of the Muslim men we interviewed
with potential threats to fertility. supported this view. It was seen by them
Professionals explained this in three ways: as a medical procedure related to a serious
motherhood was seen as an intrinsic part condition. Like other men interviewed –
of their identity; the limited options for irrespective of ethnicity – it nevertheless
women to store gametes/embryos; and the generated unease and embarrassment.
potential for premature menopause. Some
had known women (but no men) refusing While professionals recognised parents’
cancer treatment as a result. desires to accompany their adult children
to consultations, the involvement of South
Oncologists emphasised the need to Asian parents/fathers was, at times, seen
prioritise and start treatment. While as controlling, intrusive and driven by
appreciating professionals’ concerns, some concerns about ‘arranged marriages’,
women we spoke to felt that they had not whereas that of ‘white’ parents was more
been given enough time or information at often seen as reflecting their struggle to
this stage. They would also have valued detach from the intensity of the shared
the opportunity to discuss their options of cancer experience.
preservation with a specialist, even
knowing their choices might be limited.
Similarly, some professionals associated Effects could be invisible to others and
South Asian cultures with a ‘pronatalist could differ across time and place, often
bias’ and strong patriarchal values and related to changing life circumstances.
saw this as explaining relationship This results in a need for different kinds of
breakdown for couples facing fertility information and support at different
problems. In contrast, breakdown of times.
‘white’ couple relationships was seen to
result from emotional strain. Culture and religion – irrespective of
ethnic background – can provide shared
Another tension occurred around the frameworks for engaging with illness,
supposed ‘culture of silence’ which treatment and its aftermath. For some
professionals identified exclusively with who followed a religion, illness assumed
South Asian patients. Among our meaning and purpose and religious
participants – again irrespective of teachings offered guidance. However,
ethnicity - not sharing fertility-related where guidance ran counter to personal
information beyond a close circle of inclinations – for example, in relation to
friends and family reflected a wish for assisted conception treatments – some
privacy. patients accepted it, while others sought
their own religious interpretation,
This is not to deny that for some patients sometimes in discussion with those close
of South Asian origin, the relationship to them.
between self, close/extended family and
wider community might operate Religious values usually had enough
differently. However, our research flexibility to enable this. Professional
highlights more shared experiences of a generalisations about religious
serious illness and its repercussions than ‘communities’, therefore, need to be used
differences across ethnic groups. with insight.
What did patients see as key influences? Finding a way forward for individuals
Not surprisingly, patients talked of the also extended to negotiating ‘cultural
biographical disruption caused by cancer expectations’ around fertility and
permeating many aspects of their lives reproduction according to gender, age,
and recovery. Uncertainty as to whether class and so on rather than ethnicity and
fertility had been damaged was a major religion alone.
issue for some and could add to, or
supersede, uncertainties attached to the Religion and culture are not the preserve
cancer experience alone. For others, it of ‘Asian’ communities either.
carried relatively little significance. Professional accounts could also rely on
Gender influenced the emotional and cultural assumptions too. This is why
physical consequences of potential some professionals found it hard to
infertility, especially within the context of disentangle their personal value
options for preservation and its long term judgements (as part of their wider cultural
ramifications. However it was also clear frameworks) from professional
that self worth, personal relationships and assessments in addressing ethical
life planning of both women and men dilemmas (also see below).
could be significantly affected.
Consequently, the complexity of reflecting fertility prior to cancer treatment.
on the meaning of cancer, while coming to Sometimes this was prompted by
terms with the risk of being childless protectiveness about ‘troubling’ patients
implicated a need for highly reflective and with such matters or by moral beliefs as to
specialised trained health and social care whether someone with a poor prognosis
professionals who can provide had a ‘right’ to parenthood. Following
appropriate support to people in different treatment, some considered it better to
cultural (and religious) settings. avoid offering fertility tests until a person
was actively planning for parenthood,
Professional encounters with ethical believing an earlier negative result could
dilemmas pose too great an emotional ‘burden’.
Professionals in the field of oncology and
reproductive medicine encounter various Most patients felt that they had received
ethical issues. These include whether efficient and timely care during diagnosis
people receiving palliative care should be and treatment but felt that, unless raised
helped to become parents; posthumous by them, fertility had not been adequately
use of stored gametes; and the use of discussed during follow-up contact.
gamete donation across the ethnic divide.
Professionals, in turn, felt cautious about
Professionals did not appear to draw raising fertility matters during follow-up
much on research evidence or formal appointments for fear of causing distress,
ethical decision-making frameworks. appearing intrusive, or in the words of
Instead, they tended to be influenced by one, opening a ‘can of worms’. Some felt
personal beliefs and what they thought that time constraints within busy clinics
they might do if faced with a similar made it difficult to deal properly with the
situation. matter; others feared ‘getting it wrong’,
especially when the patient was younger
Sometimes professionals’ moral or or of a different ethnicity or gender from
emotional uncertainties were lowered them.
when specialist counsellors had been
involved. They felt counselling ‘wheedled Patients wanted professionals to use
out’ ‘unsuitable’ people or otherwise led plainer language concerning risk to
them to feel less morally responsible for fertility without being blunt and to make
the outcome of their own part in the clear what information and services might
intervention. be available in the future. Women in
particular did not always understand that
What needs to get better? questions about their menstrual cycle
On the whole, professionals thought that related to their reproductive capacity.
they had got better at dealing with fertility
matters at diagnosis and during treatment Patients and professionals alike
but believed they had a long way to go to recognised the need for improvements to
match this standard when offering longer psycho-social support, both through
term follow-up. specialist therapeutic counselling and
through specialist social work and related
Even so, some professionals guarded their services.
right to exercise discretion in talking about
Patients would have also liked more and vice versa and to use that ‘knowledge’
support and advice about benefits, to inform their interventions. Such
education and employment and greater processes will facilitate improved
challenges to discrimination against confidence when working in multi-
cancer ‘survivors’. Often the long-term cultural settings, without assuming there
physical and psychological side effects of is one ‘right’ approach.
treatment - including those to do with
fertility - are exacerbated by loss of work Engaging with cultural, religious and
or educational and training opportunities. ethnic diversity and challenging
stereotypes is an important step forward
Facilitating culturally competent practice in enabling professionals to raise
Our research offered many examples of meaningful questions within the context
assumptions about ‘Asian’ families being of providing care in a multi-cultural
governed by prescriptive norms laid society.
down by religion and culture. These
views remind us, yet again, of the Recommendations
challenges of achieving ‘culturally 1. Patients of all ethnicities should be
competent care’ alongside ‘patient centred offered an opportunity to consult a
care’ within a multi-ethnic society. specialist in reproductive medicine
before starting cancer treatment. It is
Understanding and engaging with ethnic especially important to avoid partial or
diversity should be seen as integral to the rushed advice when discussing
general training of health and social care options for preservation of gametes
professionals, rather than as an ad hoc with women, given the additional
‘competence’ to be achieved through brief complexity of such processes and
training sessions. Nor is reliance on 'fact- potential outcomes.
files' about cultural practices of minority
ethnic groups an appropriate response. 2. All patients, including those where the
need for treatment is too urgent to
This study indicates the need for reflective allow cryopreservation options to be
practitioners able to consider what is considered, should be offered an early
‘familiar in the unique and unique in the opportunity to discuss fertility matters
familiar’ when working with diverse again once cancer treatment is
ranges of patients and families. underway.
Greater sensitivity to the subtleties with 3. It is important to incorporate
which individuals use cultural values and discussions of fertility routinely in
norms to give meaning to their experience long term follow-up, taking care to use
is called for - not denying the importance plain language and to involve
of paying attention to social and cultural specialist therapeutic/psycho-social
context but doing so as patients see it. support services as necessary.
Professionals need support and training to 4. Another useful strategy would be to
extend such reflective processes into incorporate advice on financial
reflexivity – to understand how they assistance/benefits into the discharge
themselves impact on their patient/client
and follow-up routine, irrespective of This is a summary of a CRUK funded
the prognosis or severity of illness. research project, ‘The experience of
cancer-related fertility impairment among
5. Better coordination and people of South Asian and White Origin’
communication between primary and (C8351/A9005). Other summaries
secondary/tertiary care during and (including a more general summary
following treatment, including in reflecting the patient point of view) and
relation to fertility, would improve information about the research, along with
continuity of care. details from a conference organised to
disseminate our findings can be found at
6. Professionals need to have greater http://www.york.ac.uk/healthsciences/rese
confidence in responding to situations arch-information/conference-cancer-
without relying on 'fact-files' or survivorship/.
generalisations about cultural practices
of minority ethnic groups. For further information about the research
Incorporating attention to please contact Karl Atkin
reflective/reflexive processes in (firstname.lastname@example.org)
professional training and support is
Marilyn Crawshaw, Sangeeta Chattoo
and Karl Atkin