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Psycho-Oncology 22: 260267 (2013)

Published online 4 October 2011 in Wiley Online Library ( DOI: 10.1002/pon.2084

Comparing doctors and nurses accounts of how they

provide emotional care for parents of children with acute
lymphoblastic leukaemia
Mary Forsey1, Peter Salmon1, Tim Eden2 and Bridget Young1*

Division of Clinical Psychology, School of Population, Community and Behavioural Sciences, University of Liverpool, Brownlow Hill, Liverpool, UK
Academic Department of Paediatric and Adolescent Oncology, Christie Hospital NHS Trust and Central Manchester and Manchester Childrens
University Hospitals Trust, University of Manchester, Manchester, UK

*Correspondence to:
Division of Clinical Psychology,
School of Population, Community
and Behavioural Sciences,
University of Liverpool, Whelan
Building, Brownlow Hill, Liverpool
L69 3GB, UK. E-mail: byoung@liv.

Received: 8 November 2010

Revised: 10 August 2011
Accepted: 5 September 2011

Objective: Despite the emphasis that communication skills training (CST) programmes place on
attending to the emotional care of patients, evidence suggests that practitioners neglect this
aspect of patient care. We describe and compare doctors and nurses accounts of managing
the emotional care of parents of children with leukaemia, with the overall objective of examining how their accounts might inform training and policy.
Methods: Audio-recorded qualitative interviews with 30 doctors and nurses working in six
UK paediatric oncology and haematology treatment centres were analysed interpretatively,
drawing on the constant comparative method.
Results: Doctors and nurses descriptions of managing emotional care differed markedly.
Doctors described reassuring parents through their ongoing clinical care of the child and by
explaining the potentially curative nature of treatment. Doctors did not think they could reassure parents by eliciting and explicitly discussing parents fears. In contrast, nurses relied on
psychological skills and explicit discussion of parents emotions to provide reassurance. Both
doctors and nurses relied on each other to ensure that parents emotional needs were met by
the multidisciplinary team rather than by individual practitioners.
Conclusion: Nurses accounts of providing emotional care resembled the emphasis on explicit
emotional talk in CST. However, doctors accounts indicated that they provided emotional care
in ways that diverged markedly from expectations in CST but that were more consistent with
their biomedical and authoritative role in patient care. These ndings may have implications
for CST in future revisions of guidelines, but work is rst needed to explore parents perspectives on emotional care.
Copyright 2011 John Wiley & Sons, Ltd.
Keywords: cancer; oncology; communication; emotional care; parentpractitioner relationships

Effective communication skills are considered essential
in cancer care [1], and guidance for communication in
health care encourages practitioners to address each
patients needs and preferences [2], including eliciting
and discussing the patients personal and emotional
experiences and concerns [3,4]. However, studies suggest that practitioners often overlook opportunities to
address the emotional concerns of patients and their
relatives [5,6], and cancer care practitioners have been
criticised for their inadequate [7] communication skills.
Therefore, there seems to be a gap between policy and
practice in the emotional care of cancer patients.
International consensus statements and training
courses attempt to address this gap by advising practitioners to focus on building relationships with patients
and to understand their perspectives [8]. Underpinning
this guidance is a belief that practitioners should elicit
Copyright 2011 John Wiley & Sons, Ltd.

and engage in overt emotional talk with cancer patients

[4,7,8]. Systematic reviews have shown that, although
there are inconsistencies in how communication skills
training (CST) courses have been implemented and
evaluated [9], CST can improve oncology clinicians
communication skills [10,11] as assessed by expert ratings. However, a recent systematic review found that
although CST improved practitioner communication
when assessed by experts, there was little evidence that
it was effective in improving patient-based outcomes
such as satisfaction or distress [12]. Other evidence
similarly indicates discrepancy between improving
communication as assessed by experts and improving
outcomes that matter to patients [13,14].
In paediatric cancer care, practitioners have a challenging role in providing emotional care for both the
child and his or her family. Survival for many types
of childhood cancer has seen remarkable improvements
in recent decades, particularly for acute lymphoblastic

Providing emotional care for parents of children with cancer

leukaemia (ALL), which has a cure rate of up to 80%,

depending on the specic subtype [15], but treatments
are unpleasant and risky and cure is not guaranteed. In
this emotionally intense situation, practitioners need
to support the childs parents through the illness
[16,17] and ensure adherence with treatment [18].
Most research has focussed on the emotional difculties that parents experience [17,19,20], whereas little
research has examined practitioners experiences of
providing emotional care for parents. Paediatric
oncologists in a qualitative interview study [21]
described delivering bad news as the most challenging
part of their role. Other research in paediatric cancer
care has focussed on communication between professionals [22], practitioners understanding of psychosocial issues and interventions [23] and their
perspectives on communication with children [24],
but little research has explored practitioners perspectives on managing parental emotion.
Therefore, we explored practitioners accounts of
their relationships and communication with parents
in the care of children with leukaemia. We anticipated
that the perspectives of doctors and nurses might
differ and so we compared their accounts. Given the
gap that seems to exist between policy and practice
on emotional care, our overall objective was to examine how doctors and nurses perspectives on the emotional care of parents might inform future training and
policy in CST.

We purposively sampled practitioners involved in the
care of children with ALL from six specialist UK paediatric oncology and haematology units. These units were
participating in a linked qualitative study (Rapport) investigating parents experiences of communication during their childs diagnosis and treatment for ALL. We
sampled some practitioners by asking parents in the
linked Rapport study about which practitioners were signicant in their childs care and inviting these individuals to participate in the study. We sampled other
practitioners because we identied them as having a
key role in childrens care, for example, those with overall clinical responsibility for a child. In sampling, we
also aimed to include equal numbers of doctors and
nurses (both hospital and community based) and to stratify participants from different units. Sampling took place
alongside the analysis.


a topic guide to ensure core issues were discussed,

although interviews were conversational and their
sequence and content were responsive to individual
participants. M.F. asked practitioners about their relationships and communication with specic families recruited
to the Rapport study, about the challenges they encountered in their role providing support for families
in general and how they thought they could best meet
parents needs. The phase 2 interviews allowed further
exploration of the parentpractitioner relationship over
the course of treatment, as well respondent validation,
as we outline below.

Data analysis
We qualitatively analysed anonymised verbatim transcripts of interviews, using an interpretive approach
and drawing on techniques of constant comparative
analysis [25]. M.F. led the analysis, reading individual
transcripts several times and coding sections of the
text and underlying issues into descriptive categories,
as well as considering the content and meaning of
accounts across whole or long sections of transcript.
B.Y. and P.S. contributed to the development of categories at a higher level of abstraction or key themes
through frequent reading of transcripts and ongoing
discussion of commonalities and divergences between
transcripts and exploration of alternative explanations.
We compared transcripts from interviews at phases 1
and 2 explicitly and transcripts from interviews with
nurses and doctors. The involvement of multiple
investigators in testing [26] the analysis and examining deviant cases helped ensure quality [25]. We also
used phase 2 interviews to test key themes in the
developing analysis [27], because such respondent
validation can help ensure the relevance of ndings
to clinical practice [28]. Our ndings are organised
under headings that relate to the key themes from the
analysis. We present brief data extracts in the main
text of the results to illustrate important points and
supplement these with additional extracts in the tables
to evidence our account of practitioners perspectives.
In presenting data extracts; square brackets indicate
short sections of text that have been removed for brevity or added for clarity; participant identication codes
indicate centres (AE); doctor codes are preceded by
D, and nurses by N.

Sample and data characteristics

The study was approved by a UK National Health Service Research Ethics Committee (Ref. 06/MRE08/18).
M.F. approached practitioners by email or in person
and audio-recorded interviews with them at two time
points (phases 1 and 2) approximately 1 year apart. In
conducting the semi-structured interviews, M.F. used
Copyright 2011 John Wiley & Sons, Ltd.

We interviewed 30 practitioners. Figure 1 indicates the

number of participants approached and interviewed at
phases 1 and 2. Across both phases, the sample consisted of 16 doctors, most of whom were male
(n = 12) and consultants (n = 12), and 14 nurses, most
of whom were female (n = 13) and hospital based
(n = 10). All the interviews took place in hospital and
Psycho-Oncology 22: 260267 (2013)
DOI: 10.1002/pon

M. Forsey et al.


Phase 1: 46 practitioners approached

Phase 1: 18 did not respond

Phase 1: 28 responded
(14 doctors and 14 nurses)

Phase 1: 28 interviewed
(14 doctors and 14 nurses)

Phase 2: 4 further practitioners

approached (2 doctors and 2 nurses)

Phase 2: 2 did
not respond
(2 nurses)

Phase 2: 2 responded
(2 doctors)

Phase 2: 28 approached for follow up

(14 doctors and 14 nurses)

Phase 2: 2
on maternity

Phase 2: 2 interviewed
(2 doctors)

Phase 2: 26 responded
(14 doctors and 12 nurses)

Phase 2: 26 interviewed
(14 doctors and 12 nurses)

Phase 2: total sample 28 (16 doctors and 12 nurses)

Figure 1. Numbers of participants approached and interviewed at phases 1 and 2

lasted between 22 and 120 min; the mean duration was

68 min at phase 1 and 56 min at phase 2.

distress, including sustaining hope and preserving

parents trust (Table 1).

Doctors accounts

Sustaining hope: Doctors perceived that parents

needed something positive to hang onto (C.D4) and
spoke of the importance of communicating in ways
that helped parents be hopeful for their childs survival as hope keeps people going (C.D3). Several
doctors talked literally about giving the parents hope
(D.D4), but most spoke about hope more indirectly,
for example, indicating that they reassured parents by
being positive or optimistic (C.D3, C.D4, D.D1,
E.D2, F.D2). Doctors pointed to how, as treatment progressed, they encouraged parents to be hopeful based
on the efcacy of treatment, and how they reassured
parents that treatment was going according to
plan (C.D3) or on the right road (C.D4). Doctors

Doctors recognise parents emotional distress

Doctors tended not to use emotional language when

describing their relationships with families and only
rarely discussed situations that they found personally
challenging. Nonetheless, their accounts demonstrated
that they recognised the emotional difculties facing
parents. For example, they spoke of how parents were
anxious and scared (C.D4) at the beginning of
treatment and emphasised how parents had been given
the worst news possibly that they could ever be told
(A.D3). Similarly, doctors described how at the end of
treatment, families suddenly lose the safety net of
the hospital (B.D4), which could be a huge hurdle
(A.D3) for them.

Table 1. Strategies doctors use to manage parents emotional

Doctors strategies for managing parents emotional distress

All doctors described providing reassurance and explanation for families at the beginning of treatment, focussing on the ability of treatment to cure the child: I
always start off being very positive, its ALL, its the
most common childhood cancer we see, the one we
know the most about. And the one were most successful at treating (B.D4). They did not describe explicitly
asking parents about their worries and fears or engaging with such fears. Instead, doctors emphasised how
they worked to keep the family together so they can
function tomorrow (C.D4) and spoke of how this
was in the childs best interests. They also described
the strategies they used to manage parents emotional
Copyright 2011 John Wiley & Sons, Ltd.

Sustaining hope
Youre giving them hope because the treatment is so good and the outlook is so
good. A.D3
Giving the parents hope and reassuring them that childhood leukaemia in a vast
majority of kids is a very treatable condition. D.D4
I tend to be slightly over-positive, but at least for these children at this early state,
theres no point in this family just being anxious all the time and being scared of
what might or might not happen. C.D4
Preserving parents trust
I do say to them that Im not going to keep talking about treatment failure. D.D1
I try to be upfront about what I do know and if I dont know to try and check things
out [] I would hope they would feel that theyre getting a straight answer from
me. B.D1
You want them to see me as being a real person and caring about them,
interested in them [] Im comfortable when I feel theyve got an element of
trust in me. C.D4

Psycho-Oncology 22: 260267 (2013)

DOI: 10.1002/pon

Providing emotional care for parents of children with cancer

described the importance of being clear with families

about the possibility that a child might relapse, or that
treatment might fail, but they also spoke of being
careful not to dwell on such negative (B.D4) or
frightening issues. They pointed to how they used
non-threatening language and phrasing and carefully
selected the information they presented to parents, for
example, one doctor thought difcult to cure was
kinder to say to parents than prognosis is poor
(C.D2), while another indicated that he was cautious
about saying too much (C.D4). Doctors did not do this
to deny parents fears; as explained above, they were
keenly aware of how anxious parents were. Rather,
they perceived that parents always hone in on the
negative (B.D4), and because of this, doctors thought
that they had a responsibility to avoid contributing
to parents fears and, where possible, take remedial
or compensatory steps to help parents manage their

Preserving parents trust: Although doctors managed

discussions with parents to avoid contributing to their
fears, without exception they were clear that trust and
honesty were essential in their relationships with parents. They described at length their efforts to earn
(D.D1) parents trust by being honest, upfront or
straight (A.D3, B.D1) so that parents understood
there would be no secrets and that, as doctors, they
would always be truthful (B.D3). Doctors thought
that showing their sincerity, caring and interest in
the child (C.D4) might help parents to trust them. They
also spoke of demonstrating their knowledge and expertise as specialists in the care of children with cancer
as a way of showing parents that they could be trusted
in their roles.
Doctors authority facilitates boundaries

Doctors spoke of how their focus on treatment allowed

them to earn parents trust while being clear about the
boundaries (A.D3) of their relationship and avoiding
encouraging parents to become overly dependent upon
them personally for emotional support. They explained
how this was particularly important in case they might
at some stage have to challenge parents in order to
serve the best interests of the child. For example, they
sometimes spoke of families who had been noncompliant with treatment and how, as doctors, it was
their responsibility to confront parents and say I
dont believe your [child is] taking it (D.D1) (Table 2).
Table 2. Doctors authority facilitates boundaries
The consultants are the top people so its their responsibility, their patient [] I think if
youre at the top youve got to have more boundaries. And I think theyll probably
say that, that theyve got to be a bit further apart. A.D3
Im not here trying to be everybodys friends, OK? [] were there for a different
purpose. Were there and the parents fully understand that our primary role is to
give the kid the best chance of [] getting cured. A.D2
Its your responsibility ((sighs)) and families will hold you responsible for that and erm
and youve gotta be quite tough [] just as a family has to be able to look back and
say they did the right thing so does the doctor. D.D1

Copyright 2011 John Wiley & Sons, Ltd.


Doctors explained that an emotional or huggy-buggy

(B.D1) relationship with parents was inappropriate
because doctors were ultimately responsible for the
childs care. Their accounts indicated that they thought
their authority facilitated necessary boundaries in their
relationships with parents.
Rather than individual professionals trying to meet
all of parents needs, doctors also explained that the
clinical team as a whole was responsible for providing
emotional care for parents. They therefore described
how the work of meeting these needs was shared
between doctors and nurses, as appropriate to their
respective roles. For example, doctors described how
they could not provide emotional care by themselves
(A.D3) or deal with everything (C.D2), adding that
they may not be the right person to help parents
but could nd the right person for them to talk to
(C.D2). They admitted they were very dependent on
good nurses (C.D4), and that parents might be more
likely to conde in nurses, often because they were
in the right place at the right time (C.D2), such as
in the hospital at night or on home visits, which provided a more relaxed environment to talk about
things (B.D1), and also because nurses know families so much better (C.D2).

Nurses accounts
Nurses role is emotional care

In contrast to doctors, nurses used emotional language

when describing the immediate effect of the diagnosis
on parents, referring to how parents lives were turned
upside down (D.N15, C.N5) or devastated (D.N15,
C.N5, D.N1). They commonly described how they
imagined they might feel in the parents situation Id
be horizontal on the oor, me (D.N2), particularly regarding the difculties of treatment a little drop of
blood for my little girl would be like Oh my goodness! (C.N5). Nurses emphasised how their role
entailed responsibility for providing emotional care
for parents and described how they talked to parents
about whatever they needed, which included overt
emotional discussion they can phone you up, have a
chat and you maybe make them feel better (E.N1).
They explained how they shared with parents personal
details about themselves to promote relationships you
can be off for a week, I got married and came back
and in and everyone was like let me see your photos,
how was it?(C.N19).
Nurses therefore wanted to care for families emotionally and to develop close relationships with them,
and they thought that this was an essential part of their
role (Table 3). They spoke of how they developed intimate knowledge of families and felt this helped them to
meet parents needs you know what mum likes, you
know what [child] likes, you know how she has her
medicines, you can tell if theres something not quite
right (D.N2). Nurses working in the community
described feeling more able to provide emotional care
Psycho-Oncology 22: 260267 (2013)
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M. Forsey et al.


Table 3. Nurses role is emotional support

And its not all medically things youre talking about. But sometimes that [emotional
talk] is what that family need. E.N1
You know its just not what theyd talk about for example, theres no way I think
[Dad] would have talked to [the consultant] particularly about all that he said
[about his feelings] to me. D.N3
We had a Mum last week who I was talking to, in tears down the phone. Her sons
been off treatment, again about six months, and she rang me because [] shed
been to the GP with her other son. B.N2

than those working in hospitals. They talked of supporting parents emotionally but also characterised their
role as invisible (D.N3) at times, because they felt
other practitioners did not see or value this work. Hospital nurses described difculties juggling (D.N15)
the physical and emotional care of families and feeling
guilty (D.N15) when they could not do both.
Parents dependence on nurses for emotional care can
challenge boundaries

Nurses accounts pointed to tensions in their roles in

caring for parents. Although providing emotional care
and having an emotional connection with families
was central to their work, nurses also spoke of needing
to detach from parents if they became overly dependent, certain families wanting more of you than you
can offer, like wanting to be your friends [] but its
not good for them and its not good for you really
(D.N15). Nurses described how exposure to parents
emotional needs left them vulnerable to emotional distress. Therefore, in providing emotional support, nurses
described having to learn and maintain professional
boundaries, adding that these could be hard to control
(A.N3) or were a source of worry (A.N4), and nurses
described feeling overwhelmed by some families who
were highly emotionally dependent (Table 4). This
was particularly prominent in the accounts of community nurses who visited families at home. They described how youre on their territory and [] they are
more likely to open up (A.N9), which meant that
nurses had to work particularly hard to maintain boundaries. For example, one nurse described feeling very
uncomfortable visiting a family who made her a sandwich as I was sitting there, she was kind of right
youve listened to me for an hour, Ive told you how I
Table 4. Parents dependence on nurses for emotional care can
challenge boundaries
Theyve moved on now which is great but [there was] a lot of dependence on myself
and on the social worker at the time. We spent hours with this family trying to
[help] and going over often a lot of the same things [] If you were on holiday it was
a disaster. E.N1
Youve got to try and help them through it, and because youre helping them through
it that then gets you deeper into that relationship. []It can be quite difcult when
you want to [] but then you feel yourself being drawn in. C.N5
Some people [] end up falling into the trap [] of wanting to be everything and
anything to families and um its just not achievable [] and becomes very
unmanageable and you end up being exhausted [] both physically and mentally.

Copyright 2011 John Wiley & Sons, Ltd.

feel, and now I want to give you a sandwich, do you

know what I mean? (D.N3).
Providing emotional care as a team

The accounts of both doctors and nurses converged in

suggesting that, in practice, emotional care was provided by a team. Nurses thought that it was part of their
role to be available to parents to discuss issues that they
might be embarrassed (B.N3) or frightened (A.N4)
to talk to doctors about, or if families felt more comfortable(A.N4) discussing their concerns with nurses.
They commented on how their frequent informal interactions with parents meant they could sit down and
have a chat (A.N4) and give reassurance and advice.
Nurses thought that an important part of their role
was talking to parents after they had seen the consultant
in order to corroborate or help explain information that
doctors had given, or as one nurse described mopping
up (C.N19) after the consultation.

We found a discrepancy between how doctors described providing emotional care for parents and
descriptions in the literature of how this care should
be provided. Doctors relied on the curative potential
of treatment to provide reassurance and emotional support for parents. They did not believe that engaging in
emotional interactions by eliciting and discussing parents fears and concerns was necessary to meet parents
emotional needs. Indeed, they felt that such interactions
were inappropriate because of their position of responsibility for the child. Limiting their explicit emotional
interaction with parents helped preserve doctors
boundaries in their relationships with families. By contrast, nurses described providing emotional care by
openly discussing parents worries and fears, and
thought this was an important part of their role.
Consensus statements [8] and guidelines [29] that
promote emotional care based on the assumption that
it should involve overt discussion about emotions
therefore do not reect how doctors in this study conceptualised the emotional care they provided in practice. Importantly, this is not to say that doctors denied
they had a role in supporting parents emotionally or
that they were cold or remote in the way they described
this aspect of their care. On the contrary, doctors
emphasised the subtle and strategic ways that they
worked to care for parents emotionally.
The nding that practitioners want to provide emotional care for vulnerable families is not new [30]. Previous research has also shown that doctors use their
knowledge and expertise as a strategy for managing
aspects of their role they nd most challenging [21],
but the focus of this study was to examine doctors perspectives on how they provide emotional care for parents. Doctors have previously been criticised for failing
to provide emotional care and for being paternalistic if
they emphasise their authority and expertise in reassuring
Psycho-Oncology 22: 260267 (2013)
DOI: 10.1002/pon

Providing emotional care for parents of children with cancer

patients. At the same time, their use of instrumental

methods (such as prioritising treatment and emphasising
their condence in treatment) of providing emotional
reassurance have been overlooked [31] or seen as diversion from meeting patients emotional needs. Therefore,
current guidance and training arguably risk devaluing
the types of emotional care that doctors think are compatible with their role while valuing those that they perceive
to be incompatible.
In contrast, nurses did not rely on treatment to reassure parents, and they valued their explicitly emotional relationships with families more highly than
doctors. Nurses felt responsible for providing emotional care for parents, and this may have contributed
to them feeling overwhelmed by parents distress at
times. The intimacy of the relationship nurses
developed with families and the value they placed on
their personal connection make it more likely that,
compared with doctors, nurses might inadvertently encourage parents dependence upon them for emotional
support. Previous evidence supports this studys nding that nurses feel responsible for providing emotional care for parents [32] and that doctors and
nurses both perceive this as an area in which nurses
take responsibility [23]. Nurses relationships with
families can be a source of job-related stress [33], particularly for those with less experience [34,35]. If
nurses place high value on their relationships with
families, it follows that they might be affected by the
emotionally challenging elements of their role and experience emotional distress themselves.
Menzies was one of the rst to argue that nurses
sometimes adopt defensive coping strategies to manage work-related stress, including distancing from
patients [36]. More recent research has suggested that
practitioners working in oncology have high levels of
emotional dissonance as a result of having to suppress
negative feelings associated with their work [37].
Importantly, our ndings suggest that caution is necessary before encouraging nurses to be more emotionally
connected with parents. Indeed, other research has
found that more experienced nurses show higher levels
of perceived stress than junior nurses after attending
workshops that encouraged them to explore their emotional responses to their role rather than deny their
grief [34]. While the value of such workshops is questionable, nurses may benet from other forms of support to avoid feeling overwhelmed by parents needs.
This study provides new insights on how practitioners perceive their professional roles in the emotional aspects of communication. However, we were
unable to explore the effect of practitioner gender,
which was confounded by profession as most nurses
were female whereas most doctors were male. The
study necessarily focussed on practitioners accounts.
Triangulation with parents perspectives is now
needed, particularly to investigate whether they felt
emotionally reassured by the forms of care that doctors described. Similar methods of triangulation in a
different eld of cancer care have shown convergence
Copyright 2011 John Wiley & Sons, Ltd.


between patients and doctors on the importance of

clinical care rather than emotional dialogue in providing emotional support [38]. Preliminary evidence
from the linked Rapport study of parents accounts
of how doctors supported them showed that parents
can feel intensely emotionally reassured by interactions with their childrens clinicians in the absence
of overt emotional discussion [39]. Evidence also
indicates that, while overt emotional discussion is infrequent in care doctorpatient interactions [6], cancer
patients are generally highly satised with their doctors care and communication [40], and that patients
do not necessarily want to discuss their emotions explicitly with practitioners [41,42].
We suggest that the differences between doctors and
nurses perceptions of their role in providing emotional
care for families relate to their clinical roles. Practitioners whose roles included responsibility for directing
curative clinical treatment valued instrumental and
emotionally non-overt ways of providing emotional
care, whereas those who had a less overt role in directing clinical treatment placed higher value on overt
emotional interaction. Our ndings are limited to a specic contextcare of children with cancer that is potentially curablebut may resonate with practitioners
working in similar specialties. Without parents perspectives on their experiences of practitioners emotional care, it would be premature to advocate that the
content of current consensus statements and communication skills training (CST) should be reviewed.
However, CST has had limited inuence on practitioner behaviour and patient outcomes [9]. We suggest
that the neglect of practitioners perspectives in developing communication guidelines and CST may partly
explain this. Guidelines and training need to take
account of the ways that practitioners conceptualise
emotional care in relation to their clinical roles, and
how this care is provided in the context of the multidisciplinary team rather than by individual practitioners working in isolation.

This study indicates that doctors and nurses describe
different ways of providing care for parents; doctors
emphasise instrumentality whereas nurses emphasise
emotionality, although each is reliant on the other to
provide the full spectrum of emotional care that parents
need. It also suggests that nurses can feel overwhelmed
in providing emotional care for parents and are themselves in need of effective support. The ndings indicate that current guidance and training is out of step
with how doctors see their role in caring for parents
of children undergoing curative treatment for cancer.
If these ndings are corroborated by evidence that parents and patients experience doctors instrumental and
emotionally non-overt communication as emotionally
supportive, current communication guidance and training may need to change.
Psycho-Oncology 22: 260267 (2013)
DOI: 10.1002/pon


We are grateful to the practitioners who participated in and supported the study. B.Y., P.S. and T.E. designed the study. M.F.
collected the data and led the analysis, to which B.Y. and P.S.
contributed. M.F. led the writing of the paper to which all other
authors contributed. This study was supported by a University of
Liverpool studentship awarded to M.F.
Tim Eden was funded by a programme grant from the Teenage
Cancer Trust, UK.

1. Steifel F, Barth J, Bensing J et al. Communication skills
training in oncology: a position paper based on a consensus
meeting among European experts in 2009. Ann Oncol
2. Epstein RM, Franks P, Fiscella K et al. Measuring patientcentered communication in patient-physician consultations:
theoretical and practical issues. Soc Sci Med 2005;61:
3. Little P, Everitt H, Williamson I et al. Preferences of
patients for patient centred approach to consultation in
primary care: observational study. Br Med J 2001;322: 17.
4. Epstein RM, Street RL. Patient-Centered Communication in
Cancer Care: Promoting Healing and Reducing Suffering.
National Cancer Institute: Bethesda, 2007.
5. Butow PN, Brown RF, Cogar S et al. Oncologists reactions
to cancer patients verbal cues. Psycho-Oncology 2002;11:
6. Hack T, Pickles T, Ruether DJ. Behind closed doors: systematic analysis of breast cancer consultation communication
and predictors of satisfaction with communication. PsychoOncology 2010;19:626636.
7. Falloweld L, Jenkins V, Farewell V et al. Efcacy of a
Cancer Research UK communication skills training
model for oncologists: a randomised controlled trial.
Lancet 2002;359:650656.
8. Makoul GP. Essential elements of communication in medical encounters: the Kalamazoo Consensus Statement. Acad
Med 2001;76:390393.
9. Gysels M, Richardson A, Higginson IJ. Communication
training for health professionals who care for patients with
cancer: a systematic review of effectiveness. Support Care
Cancer 2004;12:692700.
10. Maguire P, Pitceathly C. Key communication skills and how
to acquire them. Br Med J 2002;325:697700.
11. Rao JK, Anderson LA, Inui TS et al. Communication interventions make a difference in conversations between physicians and patients: a systematic review of the evidence. Med
Care 2007;45:340349.
12. Moore PM, Wilkinson SSM, Mercado SR. Communication
skills training for health care professionals working cancer
patients and their families and/or carers. Cochrane Database Syst Rev, 2004;2:121. DOI: 10.1002/14651858.
13. Uitterhoeve RJ, Bensing JM, Grol RP et al. The effect of
communication skills training on patient outcomes in cancer
care: a systematic review of the literature. Eur J Cancer
Care 2010;19:442457.
14. Duke S. Communication skills training in end of life care
short of the mark? Eur J Oncol Nurs 2010;14:261262.
15. Mitchell C, Payne T, Wade R et al. The impact of risk stratication by early bone marrow response in childhood acute
lymphoblastic leukaemia: results from the United Kingdom
Medical Research Council trial ALL97 and ALL97/99. Br J
Haematol 2009;146:424436.
16. Masera G, Spinetta JJ, Jankovic M et al. Guidelines for a
therapeutic alliance between families and staff: A report of
the SIOP Working Committee on Psychosocial Issues in
Pediatric Oncology. Med Pediatr Oncol 1998;30:183186.
Copyright 2011 John Wiley & Sons, Ltd.

M. Forsey et al.

17. Young B, Dixon-Woods M, Heney D. Identity and role in

parenting a child with cancer. Pediatr Rehabil 2002;5:
18. Yeh CH, Lin CF, Tsai JL et al. Determinants of parental
decisions on drop out from cancer treatment for childhood
cancer patients. J Adv Nurs 1999;30:193199.
19. Kars MC, Duijnstee MS, Pool A et al. Being there: parenting the child with acute lymphoblastic leukaemia. J Clin
Nurs 2008;17:15531562.
20. Dixon-Woods M, Young B, Heney D. Rethinking childhood experiences of cancer: a multidisciplinary approach to chronic childhood illness. Open University
Press: Berkshire, 2005.
21. Stenmarker M, Hallberg U, Palmerus K et al. Being a messenger of life-threatening conditions: experiences of
pediatric oncologists. Pediatr Blood Cancer 2010;55:
22. Eilertsen MEB, Kristiansen K, Reinfjell T et al. Professional
collaboration - support for children with cancer and their
families - focus group interview - a source of information
and knowledge - professionals perspectives. J Interprof
Care 2009;23:356368.
23. Kiernan G, Meyler E, Guerin S. Psychosocial issues and
care in pediatric oncology. Cancer Nurs 2010;33:1220.
24. Anderzen-Carlsson A, Kihlgren M, Skeppner G et al. How
physicians and nurses handle fear in children with cancer.
J Pediatr Nurs 2007;22:7179.
25. Glaser BG, Strauss AL. The Discovery of Grounded Theory:
Strategies for Qualitative Research. Weidenfeld & Nicolson:
London, 1968.
26. Stiles WB. Quality control in qualitative research. Clin Psychol Rev 1993;13:593618.
27. Mays N, Pope C. Qualitative research in health care: assessing quality in qualitative research. Br Med J 2000;320:
28. Lincoln YS, Guba EG. Paradigmatic controversies, contradictions, and emerging conuences. In Handbook of Qualitative Research (2nd edn), Denzin NK, Lincoln YS (eds).
Sage Publications: London, 2000; 163189.
29. National Institute for Health and Clinical Excellence. Improving Outcomes in Children and Young People with Cancer: The Manual. National Institute for Health and Clinical
Excellence: London, 2005.
30. Helft PR. Necessary collusion: Prognostic communication
with advanced cancer patients. J Clin Oncol 2005;23:
31. Pedersen R. Emperical evidence of empathy in medicinea
critical review. Patient Educ Couns 2009;76:307322.
32. Hopia H, Tomlinson PS, Paavilainen E et al. Child in
hospital: family experiences and expectations of how
nurses can promote family health. J Clin Nurs 2005;14:
33. Emery JE. Perceived sources of stress among pediatric
oncology nurses. J Pediatr Oncol Nurs 1993;10:8792.
34. Hinds PS, Puckett P, Donohoe M et al. The impact of a grief
workshop for pediatric oncology nurses on their grief and
perceived stress. J Pediatr Nurs 1994;9:388397.
35. Gallagher R, Gormley DK. Perceptions of stress, burnout
and support systems in pediatric bone marrow transplantation nursing. Clin J Oncol Nurs 2009;13:681685.
36. Menzies IEP. A case-study in the functioning of social
systems as a defence against anxiety: A report on a study
of the nursing service of a general hospital. Hum Relat
37. Kovacs M, Kovacs E, Hegedus K. Is emotional dissonance
more prevalent in oncology care? Emotion work, burnout
and coping. Psycho-Oncology 2010;19:855862.
38. Mendick, N, Young B, Holcombe C et al. The ethics of
responsibility and ownership in decision-making about
treatment for breast cancer: Triangulation of consultation
with patient and surgeon perspectives. Soc Sci Med
Psycho-Oncology 22: 260267 (2013)
DOI: 10.1002/pon

Providing emotional care for parents of children with cancer

39. Young B, Ward J, Forsey M et al. Testing the validity of

the unitary theory of clinical relationships: comparison of
observed and experienced parentdoctor interaction. Patient
Educ Couns 2011;85:6067.
40. Pollak K, Arnold RM, Jeffreys AS et al. Oncologist communication about emotion during visits with patients with
advanced cancer. J Clin Oncol 2007;25:57485752.

Copyright 2011 John Wiley & Sons, Ltd.


41. Peters S, Rogers A, Salmon P. What do patients choose to

tell their doctors? Qualitative analysis of potential barriers
to reattributing medically unexplained symptoms. J Gen
Intern Med 2009;24:443449.
42. Thomsen DK, Pedersen AF, Johansen MB et al. Breast cancer patients narratives about positive and negative communication experiences. Acta Oncol 2007;46:900908.

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