distress management
Helping the clinician help me:
towards listening in cancer care
Austyn Snowden, Craig A White, Zara Christie,
Esther Murray, Clare McGowan and Rhona Scott
Abstract
Despite global support for the ideal of shared decision making, its
enactment remains difficult in practice. The UK charity, Macmillan
Cancer Support, attempted to incorporate the principles of shared
decision making within a programme of distress management
in Scotland. Distress management begins by completing the
Distress Thermometer (DT). Although the DT is a screening
tool, its function in this programme was extended to facilitate
collaborative communication within a consultation. The aim of
this grounded theory was to analyse the patient experience of the
process. Nineteen people underwent semi-structured interviews
focused on their experience of distress management. Participants
were a mixed-cancer cohort aged 40–79 years. Findings were
discussed in a structured manner with a further 14 service
users and carers, and 19 clinical specialists in cancer. Constant
comparison of all data revealed that the process of positive distress
management could best be explained by reference to the core
category: ‘helping the clinician help me’. The emergence of this
core category is detailed by situating its development within the
iterative nature of the grounded theory method.
Key words: Cancer n Distress n Grounded theory
n Distress thermometer
T
he quality of the clinician-patient consultation is
known to impact on clinical outcome (Arbuthnott
and Sharpe, 2009). Shared decision making is seen
as fundamental to good consultation, which in turn
leads to a better prospect of concordant treatment (Elwyn et
al, 2010). In the UK, the Co-creating Health (CCH) initiative
highlights the important role of the patient in this agenda;
patient-centred care involves both clinicians and patients
meeting as two experts, each with respective knowledge (The
Health Foundation, 2008; Realpe and Wallace, 2010).
Austyn Snowden is Reader in Mental Health and Craig A White
is Chair in Psychological Therapies, School of Health Nursing and
Midwifery, University of the West of Scotland, and Assistant Director,
Healthcare Quality, Governance and Standards, NHS Ayrshire and
Arran; Zara Christie is Psychology Research Assistant, Esther Murray is
Macmillan Consultant in Psychosocial Oncology and Clare McGowan
is Clinical Psychologist in Psychosocial Oncology, Psychology
Department, Ayrshire Central Hospital, Irvine; and Rhona Scott is
Macmillan Clinical Nurse Specialist, Crosshouse Hospital, Kilmarnock,
Scotland
Accepted for publication: January 2012
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However, shared decisions have proved difficult to establish
in practice (Stevenson et al, 2004; Richards and Coulter,
2007). Many clinicians believe that they do not have enough
time to manage consultations in this way (Légaré et al, 2008),
and others believe their patients do not want to participate
in this way (West and Baile, 2010). Patients are similarly
unclear. There is evidence that people expect a consultation
to entail examination, tests, diagnosis, treatment, prescriptions,
medication, and a coherent outcome (Kenten et al, 2010), but
less evidence that they want an active role in these decisions.
Empirical evidence of successful collaboration is, therefore,
highly valued. This paper outlines the components of a
successful initiative: distress management in cancer.
Distress management as shared care
Distress is a well recognised complication of cancer and its
treatment (Zabora et al, 2001; Strong et al, 2007; Mitchell,
2010). Untreated distress leads to deterioration in quality
of life for cancer patients (National Comprehensive Cancer
Network, (NCCN), 2010a), whereas managing distress
improves quality of life (Adler and Page, 2008). It is, therefore,
rational to take a structured approach to reducing distress in
cancer patients.
The Distress Thermometer (DT) (Figure 1) is a valid,
sensitive and reasonably specific screening tool for detecting
distress (Mitchell, 2007). Detecting distress is essential, but it
is not sufficient. For example, there is evidence that screening
for distress makes no difference to distressed people, even
when the results are fed back to clinicians (Rosenbloom et
al, 2007). There is, therefore, a potential gap in the current
NCCN guidelines on distress management (NCCN, 2010b),
which focus on actions to be taken by the clinician.
That is, although the focus of these guidelines is clearly
aimed at optimal outcomes for the patient, it is less clear that
the patient is expected to play any role beyond providing
pertinent information so the clinician can identify the
relevant algorithm. While this approach is risk free and
rational (Gawande, 2010), it may erroneously exclude the
‘shared care’ aspect of the process and so, may not facilitate
optimal care as planned. Some authors have recognised this as
there is evidence that the DT may be a useful communication
tool; a means to structure a consultation focused on distress
as experienced by the patient (Dabrowski et al, 2007; Thewes
et al, 2009; Johnson et al, 2010). These examples represent
evidence of structured shared care in action (Snowden et al,
2011) and this study seeks to elucidate this process.
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
Macmillan Cancer Support funded a UK study to
evaluate the impact of a cancer distress management (DM)
intervention in NHS Ayrshire and Arran, Scotland. This
intervention is described in Table 1. The purpose of this
study was to interpret the subjective impact of DM in depth
in order to identify events and actions that may facilitate or
detract from the process. The study aims were to articulate:
n The process
n Factors impacting on the process of the patient experience
of distress management.
Research ethics
Formal ethical approval for the study was granted by the
Local Ethics Committee and the NHS Research and
Development department.
Method
A grounded theory (GT) approach was adopted as the most
coherent method of articulating the social process of DM
(Charmaz, 2009). Figure 2 illustrates the key characteristics
of the method; the iterative, but progressive, relationship
between the data (shaded), analysis (area above) and the
researchers (wavy black arrow), (Mason, 2002; Suddaby,
2006). For ease of reporting, the research is presented in a
linear manner (Charmaz, 2006; Kelle, 2007).
Sample
The sample evolved as a function of the research process
(Glaser, 1978; Strauss and Corbin, 1998; Charmaz, 2006;
Hutchison et al, 2009). The main aim of the sampling
strategy was to ascertain broad evidence on the process of
DM by targeting a wide range of people who had experience
of DM. The inclusion and exclusion criteria used appear in
Box 1. Of the 17 participants recruited in this phase, 6 were
male and 11 were female. Ages ranged from 40–79 years
(M=59.47 years, SD=11.07 years). The sample was a mixedcancer cohort of participants with experience of DM. Time
since diagnosis ranged from 8–43 months (M=21.21 months,
SD=10.85 months). DT scores ranged from 0–10 (M=4.75,
SD=3.89).
These participants were interviewed between April and
September 2010. Two females were interviewed twice
(second time was in the verification phase in October
and November 2010), totalling 19 interviews in all. The
verification phase also included three focus groups with a
further 14 service users and 19 cancer specialist practitioners.
Research process: sample and interview
Convenience sample
Each interview followed a semi-structured format (Box 2)
so that a degree of uniformity was retained but interesting
leads could be followed as and when they arose (Huang et
al, 2009).
The first eight interviews were subject to line-by-line
coding by the third author, focusing on instances of action
described in the interviews (Glaser, 1978; Charmaz, 2006).
Coding here refers to the process of associating ‘meaning
labels’ with segments of the data in order to facilitate
conceptual analysis. Memos were written throughout this
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process of constant comparison in order to support initial
analysis and record early thoughts and patterns in the data
(Hutchison et al, 2009). These codes and memos were stored
as ‘nodes’ within NVivo 8 software (Bringer et al, 2006).
The initial interpretation suggested that broadly positive
or negative outcomes arose from how, where and when the
DT was introduced to people. For example, people could be
put off by the timing and manner in which they felt DT was
given to them. Conversely, people engaged with and valued
the process if they felt the DT was personally relevant and
given to them by someone who subsequently read it and
spoke to them about it.
A further nine people were interviewed. By the end of
this phase, a degree of data saturation appeared to have been
reached. No new data had emerged within the last three
interviews, suggesting most pertinent data may have been
captured by this point (Charmaz, 2006; Mills et al, 2008a;
Hutchison et al, 2009). These latter transcripts were subject
to the same process of analysis as the first eight interviews
and were constantly compared to data gathered earlier by
incorporating them within the same node structure. Using
this framework method (Smith et al, 2011) meant constant
comparison of data was maintained at all times and that any
new code or memo would stand out (McGhee et al, 2007).
The combined analysis was discussed with focus groups and
the research team to facilitate reflexive review (Mills, 2009).
Results and analysis
An example of the analysis undertaken is shown in Figure 3
in relation to the interview question ‘What do you think
the purpose of the DT is?’. Responses were grouped, along
with their various codes and memos to ascertain patterns
and connections. Visual models of the data were considered
useful, particularly at this stage, to ascertain links between the
nodes and primary data, and to highlight any novel coding
instances that may not necessarily fit with these patterns
(Charmaz, 2006). The central code in Figure 3 takes that
position because it relates to aspects of all the codes, memos
and quotes. Any explanation of these codes and quotes could
begin with ‘helping the clinician help me’. This process of
pattern recognition, connection, verification and explanation
was repeated until all the data had been accounted for. In all,
seven of these central codes arose from constant comparative
analyses of the data. These central codes are hereby referred
to as ‘thematic categories’ (Bowen, 2008).
Thematic categories
Interviewees articulated themes that facilitated or detracted
from their experience of DM. These categories were:
n First impressions: time, place, person and method of being
introduced to DT
n Opinion of the name of the DT
n Whether or not they found the DT personally relevant
n Their response to being invited to express their concerns
in this manner
n Their appreciation of their role in ‘Helping the clinician
help me’
n Gaining insight or new knowledge as a result of the
process
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
distress management
Agreeing on a relevant action plan (or not) as a consequence
of the previous stages.
There were positive and negative instances of all the
thematic categories, and the process was unlikely to succeed if
‘first impressions’ were poor. If, however, DM was experienced
as genuinely shared care, resulting in positive action or new
and useful knowledge, those aspects were likely to be
connected in a positive sense by the interviewee. Examples
from each thematic category are given below.
n
First impressions
The first step in the process of DM involved introduction
and completion of DT. The way this was done significantly
impacted on attitudes towards it and subsequent action.
‘Why did they shove forms [DT] in my face
when I didn’t need that? At that time. It was the
wrong time.’ (Interview 6)
‘[Getting the DT] earlier would have been easier
for me, [I would have] maybe got more help.’
(Interview 10)
Table 1. The DM implementation process
The DT, an analogue scale with 0 indicating no distress and 10 extreme distress
was accompanied by a problem list (PL) (Richardson et al, 2006): a tick-box list
of 37 specific issues categorised into five domains: physical, practical, family,
emotional and spiritual problems/concerns. Participants rated their distress, ticked
any problems they had, and finally indicated and ranked their three most pressing
problems in priority order. The purpose of this was to facilitate a focused discussion
within the consultation on aspects of distress important to the person.
The clinician then discussed the DT and PL with the person during consultation.
Various clinical actions were indicated according to type and severity of distress.
Actions ranged from listening and acknowledging the personal issues of distress
(DT score 0–3); further assessment of mood, consultation with other professionals
or provision of further information (4–6); or referral to specialist services (7+). Not
all actions were appropriate or necessary in every case and so, clinical judgement
and personal choice drove outcome. For example, a high DT score may have been
owing to financial issues, in which case referral to Macmillan Money Matters (a
financial help service) was considered more appropriate than mood assessment.
All people taking part in this study experienced this process.
These interviewees went on to disengage with the process.
Opinion of the name of the DT
There was disagreement concerning the name of the distress
thermometer. Some felt the name to be wholly appropriate
given that it was tailored to identify and resolve distress.
Others felt the focus on the negative was ‘auto-suggestive’
(Interview 1), in itself creating distress. This was a significant
issue for a minority, and certainly a factor in disengagement:
‘I object to people being given the distress
thermometer named as the distress thermometer.
It tells people they’re distressed. [It needs a] name
change and a rewrite.’ (Interview 1)
Others found the name to be suitable for the exercise:
Interviewer: ‘…some people say they’d prefer [DT
to be called] “wellbeing thermometer.”’
Patient: ‘I’m not sure how I feel about that. Cause
I think the actual stress/distress element definitely
needs to be addressed which I feel is the whole
point of this.’ (Interview 13)
Personal relevance of the DT
Some saw the DT as personally relevant and others did not;
this influenced engagement with the process. There was
evidence that viewing the DT as relevant to others had a
positive effect on engagement, i.e. seeing that it may be
relevant for peers was positive from a personal perspective:
‘[The DT] was very good for focusing you
and [your] first, second, and third problem.
And I only had 3 problems anyway so that was
absolutely fine. But I think for some people
they’re going to have a whole host of things, and
I think that [the DT’s] really good.’ (Interview 11)
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
Figure 2. Key grounded theory characteristics (Hutchison et al, 2009)
Their response to the nature of the invitation
Being invited to express concerns via the DT was largely
welcomed by the majority:
‘I was there because of the operation…to make
sure there was nothing else…and it never entered
my head, that I could have discussed anything
else…so that [distressing problem] wouldn’t have
been mentioned…and I wouldn’t have thought
that [cancer] clinic could’ve done anything about
it…I didn’t realise that you could be helped in
that way. I didn’t realise that at all.’ (Interview 3)
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Box 1. Inclusion and exclusion criteria
Inclusion criteria
Patient diagnosed with cancer and
receiving/received care in NHS Ayrshire and
Arran. They must be over 18 and be capable
of consenting to participate. All patients
invited to attend study centre taking part in
the distress management project.
Exclusion criteria
People not in receipt of cancer
diagnosis
Person deemed incapable of
consenting to participate as
defined by the Adults with
Incapacity Act
Box 2. Semi structured interview schedule
Have you seen this form (DT)?
When did you see it?
Who gave it to you?
What were your first impressions?
What do you think the purpose of the DT is?
What did you do with the DT when you’d completed it?
Did anything happen as a result of completing it?
Can you tell me any positive experiences associated with DT?
Can you tell me any negative experiences associated with DT?
What difference, if any, did discussing the DT with clinician make in comparison to
your previous consultations?
Conversely, if the invitation to express concerns was
perceived or treated as a ‘tick-box exercise’ then the opposite
reaction was expressed:
No, I just ticked it and handed in the form at the
desk…The consultant didn’t see it because he
wasn’t to get to see it (Interview 14)
Their perceived role in ‘helping the clinician help me’
The next stage of the process was the use of the DT as a guide
for collaborative conversation between patient and clinician.
Whether this stage of the process was facilitated or not
depended on whether the promise of structured consultation
created in the previous stage was enacted. Positive examples
of the category ‘helping the clinician help me’ are given in
Figure 3. A negative instance, where the absence of clinicians’
knowledge of what may be distressing for this person, led to
a very unsatisfactory consultation:
‘…there was a doctor who I had never met before,
but she was going to be in charge of my treatment
and I was going to the hospital to meet her and
I walked into the room, and there was no sort of
introduction, she just sort of said hello and the
next thing, “You do realise that this is going to
have a definite impact on your life expectancy?”.
And I nearly hit the floor and I just thought, that’s
awful…and I just thought, you might be an expert,
you might know all about chemotherapy, and you
might know all about how to treat somebody, but
that’s the worst thing that you could have said to
somebody, meeting them for the first time. So I
think that this [DT] should be seen as a learning
tool, I think it could be quite an educational thing
for everybody.’ (Interview 13)
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Gaining insight or knowledge as a result of the process
The final part of the process involved enacting the plan
negotiated within the consultation. This involved various
actions, for example, attending a support group, engaging
with relevant services or simply feeling that they have more
control and received more information as a result of being
heard in a supportive environment:
‘What I did get out of [DM] was [specialist]
referred to me a counsellor, she also got me to
my stoma appointment...she thought I might
benefit from counselling, and I said I’ll take all
the help I can get. I knew I was going to need
help. So we talked about it that day, and they set
up and I’m sure I probably was at counselling the
following week.’ (Interview 17)
Relevant action plan as a result of previous stages
The following person became aware of issues that were
troubling her as a consequence of filling in the DT. This
insight was enough for her to change her actions and enact
the DM herself:
‘Once I knew why I was feeling so distressed
I could then take measures to stop it, which
ultimately helped me through the treatment…
If everything’s broken down it’s much easier to
understand.’ (Interview 10)
In summary, the process involved being introduced to and
completing the DT, discussing the document with a clinician
and enacting the subsequent distress management plan.
This process was consistent although its individual success
or failure was dependent on the personal experiences of
the stages as exemplified above. Successful DM requires a
positive or neutral experience through the steps. A negative
experience in any of the steps results in less-than-optimal
outcome. This is particularly true in the early stages, where
disengagement is most likely. This is why this stage is
coloured red in Figure 4, amber in the centre and green in
the outcome stage. This colour coding was suggested by
patients in the verification stage. The rationale for this is
discussed next.
Theoretical sampling
In brief, the authors ascertained structured feedback on the
theory from 14 service users and 19 clinical nurse specialists
in cancer. The 14 service users were members of a cancer
support peer group. Seven had direct experience of distress
management, either as a patient or a carer and seven had
not, but had extensive service user experience of the health
support systems in cancer care. As such, this feedback was
considered credible and important and so, this group was
interviewed twice, entailing three focus groups in all.
This verification phase involved fine tuning of the model,
such as in the example of the traffic light colour suggestion.
These primary colours were suggested by the service users
who identified that the process could most likely go wrong at
the beginning, and that this should be visualised. This turned
out to be an important insight as it subsequently clarified
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
distress management
“I would hope that it would maybe make
doctors and nurses a little bit more
aware, or educate them more as to just
exactly how a cancer diagnosis affects a
person” Interview 13
“Obviously to give you some kind
of background and try to give
information that might help…
looking into the prostate cancer”
Interview 15
Getting background information into specific cancers
“…to see if people may
need…some help with things, to
see how they’re dealing
with…whatever illness” Interview 12
To make clinicians more aware
“I think it might lead
to maybe better
treatment for these
people, and myself”
Interview 10
“Cause you can divide it into
wee chunks and think that’s
upsetting me” Interview 5
Lead to better treatment
HELPING CLINICIAN
TO HELP ME
“…there’s a lot of things that I
think you can be helped with, if
you know about it” Interview 3
Helps patients identify way they are upset
Identify if patients need help
“… to tease out those real issues
that remain for you, and to see if
they can help you with them
basically” Interview 11
Identify issues that remain for the patient
Enabling patient to get help
“[The DT] brought
things out in the
open for me”
Interview 4
“It gave [him] the
opportunity to say…why
he was feeling like that
on the day” Interview 8
See how patients are dealing with things
As a reminder or prompt during the consultation
“I suppose to see how people are
dealing with it when they come
out…the people who are doing the
caring…note what people are
saying and perhaps deal with
problems in a different way”
Interview 12
“…just to remind me,
’cause when I get in there
it just goes away”
Interview 10
“I found it very helpful, I
found even reading the
questions that you want to
ask, but when you’re asked
these things they just go
from your head” Interview 3
Figure 3. Responses to the question ‘what do you think the purpose of the DT is?’ with links to their codes and thematic category: ‘helping the clinician help me’
thinking on how to best allocate resources to facilitate future
development of distress management.
As well as the focus groups, anonymised questionnaires
were provided for further feedback at the end of these
sessions from those that maybe did not want to contribute,
or were unable to get their points across during the sessions.
In addition, two of the original interviewees agreed to be
interviewed again with the purpose of verifying the model.
All participants found the theory coherent with their
personal experience and wider understanding:
‘I see you’ve put that you can ‘empower yourself ’
(dotted line Figure 4) and that’s what I felt…I
think you’ve broken it down really well. I think it
looks good.’ (Interview 19)
Yeah…when it’s appropriate to give it to you and
I suppose how it’s presented, the method, yup how
relevant it is, and it was, and it does help you with
your discussion with your clinician, Occasionally
filling in the DT in itself is empowering, yeah,
I think for the most straightforward cases like
myself who had a really good outcome that would
be the case.’ (Interview 18)
The most consistently discussed aspect of the model by
all participants in this phase was the theme of ‘helping the
clinician help me’ (Figure 3). Many participants recognised
this process when asked about the most relevant aspects of
the theory:
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
‘For me – [the most relevant aspect is] helping
clinicians to help me’ (Service User 1)
‘The fact of the DT being given to clinician is
excellent if they take the time to read it and also
take appropriate action.’ (Service User 2)
In particular, those who had experienced DM had a view on
how the DT had provided this function. For example:
‘And again, “help clinician to help me”: when
I went for the counselling and she gave me the
Distress Thermometer, and she could then help
me because of the way I was feeling at that
particular time, she knew then, what to say to me
as it were. You know, how to help me over that.’
(Interview 19)
‘I think it must be really helpful for the clinician
as well because it’s really narrowing it down for
them. And if someone maybe has a lot of issues
at least it’s taking it down to the top three. They
won’t have time to sit there and go through every
single problem, if it narrows it down to the top
three… [and] maybe just signpost you for some
of the others. But it means that they can also
work to time.’ (Interview 18)
Thus, ‘helping the clinician help me’ is the core category of
this grounded theory (Glaser 1978; Chen and Boore, 2009).
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Context of Distress Management
Time, place,
person, method
Name of DT
Helping clinician
to help me
Gaining insight or
new knowledge
Completing DT
Discussing DT
Enacting DT
Receiving
appropriate care
Relevance of DT
Being invited to
express concerns
Occasionally filling in DT is in itself empowering
Figure 4. The process of Distress Management in clinical practice is facilitated by positive experiences of the factors in the dotted boxes and detracted through
negative experiences
Discussion
Distress management was highly valued by patients.
They recognised the importance of providing pertinent
information to help the clinician, and broadly felt the
process helped in this regard. In return, they felt like they
had received personally relevant information. Using the
distress thermometer and problem list as a consultation
tool extended the original function of the DT to facilitate
shared care.
As mentioned, other clinicians have recognised this
potential to extend the utility of the screening tool
(Dabrowski et al, 2007; Thewes et al, 2009; Johnson et al,
2010). This also aligns with growing interest in the clinical
utility of other research instruments. For example, there
is considerable work worldwide on the development of
patient reported outcome measures (PROMS) for the
purpose of evaluating care (Cella et al, 2010; Barham and
Devlin, 2011; Winters and Thomson, 2011). Akin to the
process of distress management, Feldman-Stewart and
Brundage (2009) suggest PROMS may also help patients
describe their problems and raise issues they may not
necessarily otherwise consider relevant.
One of our original study intentions was to test the
hypothesis that DM would take more clinical time than
treatment as usual. Unfortunately, the randomised controlled
trial we set up to test this was underpowered.We finished the
trial with 80 participants (40 in each group) instead of the
requisite 128 to claim significance. We can report that there
was no significant difference in clinical time taken between
those randomised to have their consultation structured
around distress management and those in the control group.
This suggests that if this trend had been maintained over the
next 48 participants, clinicians managed to deliver distress
management without impacting on consultation time. This
needs to be repeated in a sufficiently powered study.
However, in further support of this method of consultation
being resource neutral (Thewes et al, 2009; Johnson et al,
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2010; Lynch et al, 2010), this study found that support
services were not overwhelmed by the act of screening
for distress using the DT. Most often, the act of discussing
and normalising distressing issues was both welcome and
sufficient. None of the participants who were offered
specialist psychology referral as a consequence of their high
DT scores took up the offer. This also aligns with other
findings, where the trend is for only one in three people to
take up the offer of specialist psychology referral (Snowden
et al, 2011).
It is worth noting that successful distress management
was facilitated by the absence of factors that often beset
unsuccessful ventures. For example, DT was largely (though
not wholly) liked and understood by most people in this
study. It was reasonably well known to clinicians, thanks
to local training initiatives, and its validity has a good
evidence base (Mitchell, 2010), circumventing any need
to persuade clinicians of the quality and potential benefit
of the intervention (Grimshaw et al, 2002). Because DM
did not take any more clinical time than treatment as usual,
the process itself did not cost any more than treatment as
usual (Happell, 2008). Fundamental issues, such as time and
cost, are often the biggest hurdles to any change in clinical
practice (Snyder and Aaronson, 2009; Elwyn et al, 2010).
However, in feeding back these findings to clinicians,
the belief that DM would take more time and unduly
stretch their skills remained resistant to change. ‘Buy in’
at every level is consistently linked with successful change
management (Elwyn et al, 2008), and the journey from
evidence to practice is known to be complex (Glasziou and
Haynes, 2005). Nevertheless, the evidence from this study is
clear. DM works in practice, the process can be understood,
and successful DM is valued by people. It appears to be
resource neutral in terms of consultation time, but this study
cannot claim to have robustly demonstrated this. Before
these conclusions can be contextualised, some limitations of
the study must be acknowledged.
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
distress management
Limitations
The randomised clinical trial needs to be repeated in a
larger sample. As far as the qualitative findings are concerned,
longitudinal data are needed to provide more detailed
outcomes. Despite its coherence in the verification phase,
this study interviewed a small sample of people, and there is
no evidence that this sample is representative of the broader
cancer population.
The major methodological issue is that any interpretive
work can be criticised for not being correctly interpreted.
Grounded theorists will have noted the authors incorporated
methodological contributions from all major theorists in
this field. This is inherently problematic, evidenced in the
protracted disagreements between grounded theorists (Heath
and Cowley, 2004; Mills et al, 2008b). There were many
pragmatic choices to make, and one of them was to focus
instead on the commonalities between grounded theorists.
The authors accepted their general principles of data
management, an approach similar to that of Chen and Boore
(2009) and Smith et al (2011), in their celebration of generic
qualitative methods.
The authors attempted to offset interpretivist criticism
as far as possible by engaging as widely and deeply with
as many relevant people as possible: they have sought out
and welcomed challenging views, presented their findings
at various conferences and forums and this theory has been
constructed from primary data and dialogue (Eagleton, 2008:
67), which goes some way to offsetting any claims of this
being a limited or subjective interpretation. In using the most
appropriate methods to answer the most pertinent questions,
the authors have generated the highest quality data given the
constraints of conducting real research in clinical practice.
Conclusion
This study has elucidated the process of DM and identified
the aspects that facilitated or acted as barriers to successful
implementation. This is a successful example of shared care,
which is extremely important given that strategies such as
CCH (The Health Foundation, 2008) have proved difficult
to enact despite their coherence with the zeitgeist. Highquality evidence of successful projects is, therefore, essential
to maintain the credibility of shared care initiatives in clinical
practice.
Successful DM was contingent on the DT being given at
the right time and in the right manner. People needed to
believe it was relevant to them, preferably personally. Where
necessary, the consultation needed to incorporate discussion
of distressing issues as identified by the patient. An agreed
plan of action then needed to be initiated and followed up.
Sometimes achieving a positive outcome was simple:
I think [the DT] was pretty helpful because [the
consultant] did explain a lot more that day we
went there…sometimes you get there and your
mind goes blank anyway, and you forget what
you were gonna ask…if we didn’t have the [DT]
form a lot of things [we] spoke about in the
waiting room wouldn’t have come up. As I say,
[the consultant] seemed to explain a wee bit
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
more, well a lot more to us about my situation.
(Interview 8)
In this regard, the process elucidated here can be seen as
straightforward. This is its strength. The distress thermometer
has proved itself useful beyond its capacity for screening, and
when used as a prompt for a shared care conversation, has the
capacity to facilitate better outcomes for patients. The authors
of this study believe that this is where its main utility lies. BJN
Acknowledgement: The authors would like to thank Macmillan
Cancer Support for their support.
Conflict of interest: The study was funded by Macmillan Cancer
Support
Adler NE, Page AEK (2008) Cancer Care for the Whole Patient. Meeting Psychosocial
Health Needs. National Academies Press, Washington
Arbuthnott A, Sharpe D (2009) The effect of physician-patient collaboration
on patient adherence in non-psychiatric medicine. Patient Educ Couns 77(1):
60–7: Epub
Barham L, Devlin N (2011) Patient-reported outcome measure implications for
nursing. Nurs Stand 25(18): 42–5
Bowen GA (2008) Naturalistic inquiry and the saturation concept: a research note.
Qualitative Research 8(1): 137–52
Bringer JD, Johnston LH, Brackenridge CH (2006) Using Computer-Assisted
Qualitative Data Analysis Software to Develop a Grounded Theory Project.
Field Methods 18(3): 245–66
Cella D, Riley W, Stone A et al (2010) The Patient-Reported Outcomes
Measurement Information System (PROMIS) developed and tested its first
wave of adult self-reported health outcome item banks: 2005-2008. J Clin
Epidemiol 63(11): 1179–94: Epub.
Charmaz K (2006) Constructing grounded theory; A practical guide through qualitative
analysis. Sage, London
Charmaz K (2009) ‘Shifting the Grounds: Constructivist Grounded Theory
Methods’. In: Morse JM, Stern PN, Corbin J, Bowers B, Charmaz K, Clarke
AE (eds.) Developing Grounded Theory: The Second generation. Left Coast Press,
Walnut Creek: 127–49
Chen HY, Boore JR (2009) Using a synthesised technique for grounded theory
in nursing research. J Clin Nurs 18(16): 2251–60. Epub.
Dabrowski M, Boucher K, Ward JH et al (2007) Clinical experience with the
NCCN distress thermometer in breast cancer patients. J Natl Compr Canc
Netw 5(1): 104–11
Eagleton T (2008) The Meaning of Life: A Very Short Introduction. Oxford University
Press, Oxford
Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R (2010)
Implementing shared decision making in the NHS. BMJ 341: c5146
Elwyn G, Légaré F, van der Weijden T, Edwards A, May C (2008) Arduous
implementation: does the Normalisation Process Model explain why it’s so
difficult to embed decision support technologies for patients in routine clinical
practice. Implement Sci 3: 57
Feldman-Stewart D, Brundage MD (2009) A conceptual framework for patientprovider communication: a tool in the PRO research tool box. Qual Life Res
18(1): 109-14. Epub 2008.
Gawande A (2010) The Checklist Manifesto: How to get things right. Profile books
Ltd, London
Glaser BG (1978) Theoretical Sensitivity. Sociology Press, Mill Valley
Glasziou P, Haynes B (2005) The paths from research to improved health
outcomes. Evid Based Nurs 8(2): 36-8
Grimshaw JM, Eccles MP, Walker AE, Thomas RE (2002) Changing physician’s
behavior: what works and thoughts on getting more things to work. J Contin
Educ Health Prof 22(4): 237–43
Happell B (2008) Barriers to implementing a Nursing Clinical Development
Unit. Contemp Nurse 29(1): 53–9
Heath H, Cowley S (2004) Developing a grounded theory approach: a
comparison of Glaser and Strauss. Int J Nurs Stud 41(2): 141–50
HuangYL,Yates P, Prior D (2009) Factors influencing oncology nurses’ approaches
to accommodating cultural needs in palliative care. J Clin Nurs 18(24): 3421–9
Hutchison AJ, Johnston LH, Breckon JD (2009) Using QSR-NVivo to facilitate
the development of a grounded theory project: an account of a worked
example. International Journal of Social Research Methodology 13(4): 283-302
Johnson RL, Gold MA, Wyche KF (2010) Distress in women with gynecologic
cancer. Psychooncology 19(6): 665–8
Kelle U (2007) “Emergence” vs “Forcing” of Empirical Data ? A Crucial Problem
of “Grounded Theory” Reconsidered 1. How Do Categories ‘Emerge’ From
the Data ? ‘Theoryladenness’ of Observations as a Problem for Grounded
Theory Methodology. Historical Social Research/Supplement 19: 133–56
Kenten C, Bowling A, Lambert N, Howe A, Rowe G (2010) A study of patient
expectations in a Norfolk general practice. Health Expect 13(3): 273–84: Epub
Légaré F, Ratté S, Grave K, Graham ID (2008) Barriers and facilitators to
implementing shared decision-making in clinical practice: update of a systematic
review of health professionals’ perceptions. Patient Educ Couns 73(3): 526–35
S25
Lynch J, Goodhart F, Saunders Y, O’Connor SJ (2010) Screening for psychological
distress in patients with lung cancer: results of a clinical audit evaluating the use
of the patient Distress Thermometer. Support Care Cancer 19(2): 193-202: Epub.
Mason J (2002) Qualitative Researching. Sage, London
McGhee G, Marland GR, Atkinson J (2007) Grounded theory research: literature
reviewing and reflexivity. J Adv Nurs 60(3): 334–42
Mills J, Bonner A, Francis K (2008a) The Development of Constructivist
Grounded Theory. International Journal of Qualitative Methods 5(1): 1-9
Mills J, Francis K, Bonner A (2008b) Getting to know a stranger--rural nurses’
experiences of mentoring: a grounded theory. Int J Nurs Stud 45(4): 599–607:
Epub
Mills J (2009) The trajectory of cultivating and growing Australian rural nurses:
Findings from a constructivist grounded theory study. Social Theory & Health
7: 39–54
Mitchell AJ (2007) Pooled results from 38 analyses of the accuracy of distress
thermometer and other ultra-short methods of detecting cancer-related mood
disorders. J Clin Oncol 25(29): 4670–81: Epub
Mitchell AJ (2010) Short screening tools for cancer-related distress: a review and
diagnostic validity meta-analysis. J Natl Compr Canc Netw 8(4): 487–94
National Comprehensive Cancer Network (2010a) NCCN Clinical Practice
Guidelines in Oncology: Distress Management. Clinical Care Options http://
tinyurl.com/d3nuuw3 (accessed 16 May 2012)
Key points
n The benefit of shared care is difficult to articulate
n Issues of distress to cancer patients may not align with clinicians’ assumptions
n Distressing issues cannot be addressed unless they are known
n Distress Management focuses consultation on pertinent issues of distress as
experienced by the patient
n The impact of this simple intervention can be extraordinary
S26
National Comprehensive Cancer Network (2010b) NCCN Clinical Practice
Guidelines in Oncology. http://tinyurl.com/2vme9ce (accessed 16 May 2012)
Realpe A, Wallace LM (2010) What is co-production? The Health Foundation,
London. http://tinyurl.com/cnvt6lc (accessed 16 May 2012)
Richards N, Coulter A (2007) Is the NHS becoming more patient-centred? Trends from
the national surveys of NHS patients in England 2002–07. Picker Institute, Oxford
Richardson A, Tebbit B, Sitzia J, Brown V (2006) Holistic common assessment
of supportive and palliative care needs for adults with cancer. DH, London.
http://tinyurl.com/caxytr7 (accessed 16 May 2012)
Rosenbloom SK, Victorson DE, Hahn EA, Peterman AH, Cella D (2007)
Assessment is not enough: a randomized controlled trial of the effects of
HRQL assessment on quality of life and satisfaction in oncology clinical
practice. Psychooncology 16(12): 1069–79
Smith J, Bekker H, Cheater F (2011) Theoretical versus pragmatic design in
qualitative research. Nurse Res 18(2): 39–51
Snowden A, White CA, Christie Z, Murray E, McGowan C, Scott R (2011) The
clinical utility of the distress thermometer: a review. Br J Nurs 20(4): 220–7
Snyder CF, Aaronson NK (2009) Use of patient-reported outcomes in clinical
practice. Lancet 374(9687): 369-70
Stevenson FA, Cox K, K Britten N, DundarY (2004) A systematic review of the
research on communication between patients and health care professionals
about medicines: the consequences for concordance. Health Expect 7(3): 235–45
Strauss AL, Corbin J (1998) Basics of Qualitative Research: Techniques and Procedures
for Developing Grounded Theory 2nd edn. Sage, Thousand Oaks
Strong V, Waters R, Hibberd C et al (2007) Emotional distress in cancer patients:
the Edinburgh Cancer Centre symptom study. Br J Cancer 96(6): 868–74
Suddaby R (2006) From the editors: What Grounded Theory is not. Academy of
Management Journal 49(4): 633–42. http://tinyurl.com/c2ou3uy (accessed 16
May 2012)
The Health Foundation (2008) Briefing: Co-creating Health. http://tinyurl.
com/7bs7pox (accessed 16 May 2012)
Thewes B, Butow P, Stuart-Harris P; Greater Southern Area Health Service
Screening Collaborative Group (2009) Does routine psychological screening of
newly diagnosed rural cancer patients lead to better patient outcomes? Results
of a pilot study. Aust J Rural Health 17(6): 298–304
West HF, Baile WF (2010) “Tell me what you understand”: the importance of
checking for patient understanding. J Support Oncol 8(5): 216–8
Winters ZE, Thomson HJ (2011) Assessing the clinical effectiveness of breast
reconstruction through patient-reported outcome measures. Br J Surg 98(3):
323–5: Epub 2010
Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S (2001) The
prevalence of psychological distress by cancer site. Psychooncology 10(1): 19–28
British Journal of Nursing, 2012 (Oncology Supplement), Vol 21, No 10
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