Professional Documents
Culture Documents
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.
ac.uk
Abstract
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
Introduction
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.
Methods
Participants
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.
261
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.
Results
Sample and data characteristics
Procedure
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.
M. Forsey et al.
262
Phase 1: 28 responded
(14 doctors and 14 nurses)
Phase 1: 28 interviewed
(14 doctors and 14 nurses)
Phase 2: 2 did
not respond
(2 nurses)
Phase 2: 2 responded
(2 doctors)
Phase 2: 2
on maternity
leave
Phase 2: 2 interviewed
(2 doctors)
Phase 2: 26 responded
(14 doctors and 12 nurses)
Phase 2: 26 interviewed
(14 doctors and 12 nurses)
Doctors accounts
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
263
Nurses accounts
Nurses role is emotional care
M. Forsey et al.
264
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
Discussion
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
265
Conclusion
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
266
Acknowledgements
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.
References
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
2010;21:204207.
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:
15161528.
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:
4758.
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.
CD003751.pub2.
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.
267
Copyright of Psycho-Oncology is the property of John Wiley & Sons, Inc. and its content may not be copied or
emailed to multiple sites or posted to a listserv without the copyright holder's express written permission.
However, users may print, download, or email articles for individual use.