The experiences of children and their pa
DIABETICMedicine
DOI: 10.1111/j.1464-5491.2011.03292.x
Article: Care Delivery
The experiences of children and their parents in
paediatric diabetes services should inform the
development of communication skills for healthcare staff
(the DEPICTED Study)
K. Hawthorne, K. Bennert*, L. Lowes, S. Channon†, M. Robling and J. W. Gregory on behalf
of the DEPICTED Study team
Cardiff University, Cardiff, *Bristol University, Bristol and †Cardiff and Vale University Local Health Board, Cardiff, UK
Accepted 14 March 2011
Abstract
The aims of this study were to describe users’ experience of paediatric diabetes services to inform development of an
intervention to improve communication between staff and patients in secondary care within a wider study (the DEPICTED
Study).
Aims
Methods adapted for paediatric settings were used to set up six audio-recorded focus discussion groups with a total
of 32 participants. Transcriptions and notes were coded thematically (supported by NVivo software) and analytic themes
developed with discussion between researchers.
Methods
Three main themes developed: the lack of two-way conversation about glycaemic control in clinic settings; the
restricting experience of living with diabetes; and the difficult interactions around diabetes the children had with their schools.
Doctors in particular were seen as struggling to link these themes of everyday life in their consultations with children and their
parents. Children felt marginalized in clinics, despite active involvement in their own blood glucose management at home.
Results
Health professionals need to balance a requirement for good glycaemic control with realism and appreciation of
their patients’ efforts. There is a need for a systematic approach to consulting, in particular using agenda setting to ensure that the
issues of both the patient and the professional are addressed. A framework for a conceptual approach is discussed. How a patient
is involved is as important as what is communicated during a consultation.
Conclusions
Diabet. Med. 28, 1103–1108 (2011)
Keywords
children, patient experience, qualitative methods, teenagers, Type 1 diabetes
Introduction
Type 1 diabetes is the most common metabolic disorder of the
young in the UK [1] and the implications of its diagnosis in
childhood on day-to-day activities, schooling and social life are
significant. The target for long-term glycaemic control is an
HbA1c of 58 mmol ⁄ mol (7.5%) or less, without frequent
disabling hypoglycaemia [2]. Coming to terms with the
diagnosis and the challenges of growing up are often marked
by poor blood glucose control in up to 30% of children with
diabetes [3]. Psychosocial support, such as supported problem
Correspondence to: Dr Kamila Hawthorne, Department of Primary Care and
Public Health, Cardiff University, 3rd floor Neuadd Meirionnydd, Heath Park,
Cardiff CF14 4XN, UK. E-mail: HawthorneK@cardiff.ac.uk
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
solving or structured behavioural intervention may improve
psychological well-being and glycaemic control [3], but is a
scarce resource that is costly in time and money.
Recent guidance from the General Medical Council has
emphasized the value of effective communication skills in all
healthcare interactions with young people [4]. The relative lack
of research in this area within diabetes is acknowledged and there
has been recent interest in objective and valid assessment of these
skills, which are agreed to include relationship building,
consultation structuring and initiation, information gathering
and giving with shared decision making and appropriate closure
[5].
The DEPICTED study was commissioned by the NIHR
Health Technology Assessment Programme (HTA) to develop a
training programme to improve consultation skills within the
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context of routine care by the multidisciplinary diabetes team [6].
In the developmental phase of this trial, a series of focus group
discussions were set up with children and their parents attending
paediatric diabetes clinics, to describe their experiences of these
services, feeding into the development of the intervention for the
main trial. This knowledge would set the context and provide
ideas for a training package to improve psychosocial support
within routine paediatric diabetes clinic appointments.
Subjects and methods
Focus group methods were adapted for paediatric settings,
using previously published guidelines [7,8]. Same-gender and
related age-banded discussion groups were arranged. Six audiorecorded focus groups were co-moderated by two non-clinical
researchers. The lead qualitative researcher (KB) specified
clinical characteristics of potential participants (duration since
diagnosis, treatment regimen, diabetes well controlled or not) to
achieve maximum variation samples within each group. Patients
matching these clinical characteristics [parents, children (aged
7–11 years) and young people (aged 12–16 years)] were then
approached by a paediatric diabetes specialist nurse for their
consent to be contacted by the researcher. Those who agreed
were sent age-appropriate written information sheets, consent
forms for parents and assent forms for children, followed up by a
telephone call of introduction from the researcher to explain the
nature of the focus groups and deal with any concerns or queries.
The paediatric diabetes clinic from which participants were
recruited was in a large teaching hospital. Continuity of care was
provided by two consultant paediatric endocrinologists, a
paediatric diabetes nursing team and a paediatric dietician.
Specialist registrars were attached to the clinical team on
12-month rotations, which also taught nursing and medical
students. Clinic appointments of 20 min were generally offered
every 4 months for those with established diabetes.
A diabetes specialist nurse familiar to the participants was
available at the venue to answer any medical concerns that arose
at the time the groups were held. The nurse was not present at the
discussions, nor privy to the focus group data. Consent and
assent forms were completed and returned before the focus
groups started. All participants were told that they could take a
break or leave the group at any time without having to give a
reason. All parents, those participating and those accompanying
their children ⁄ young people to the venue, completed an
information sheet documenting their own age, occupation,
family size, child’s age, duration of diabetes, other family
members with diabetes and how well they believed diabetes
management was going at that time for their child.
A topic guide was designed to direct the discussions (Fig. 1).
To encourage openness, the focus group discussions took place
without parents being present in the room. A separate discussion
group was held for parents. Basic ground rules for the conduct of
the group discussion were introduced, followed by icebreaker
games for the children’s groups. Each participant selected from a
range of images depicted on postcards to represent a topic related
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User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
(i)
(ii)
(iii)
(iv)
(v)
What is the hardest thing about living with diabetes?
What would you most like to change about living with diabetes?
What is most helpful about the diabetes clinic?
What would you most like to change about the diabetes clinic?
What is communication like with the clinic staff, and how would you
want it to be?
FIGURE 1 Focus group discussion topics.
to diabetes they could then discuss. One researcher assumed the
role of the main facilitator while the other provided ongoing
summaries, logged comments and handled recording equipment
and refreshments.
Group discussions lasted between 66 and 98 min, including a
break with refreshments. They were transcribed verbatim into
NVivo (QSR International (UK) Ltd., Southport, UK), a
qualitative software package. Transcripts were coded and
emerging themes identified by one researcher (KB). Two others
(KH and SC) then read the transcripts independently and agreed
the coding and themes. Themes were further developed and
linked through discussion between researchers. All three
researchers (KB, KH and SC) were experienced in qualitative
research methodology, and three (KH, SC and JG) had a clinical
background, so that clinical and non-clinical perspectives could
be combined.
Results
Forty-eight patients and parents were initially invited to
participate. Of those, 39 returned ‘consent to contact’ slips and
32 individuals eventually participated in one of the six focus
groups held (Table 1). The range of duration of diabetes in
participating patients was 18 months–7 years.
There were no important differences in the identification of
sub-themes by those involved in the thematic analysis.
Experiences from paediatric diabetes clinics
The main themes arising from this section of the discussions were
the experience of the clinic process and how communication
with different professionals within the paediatric diabetes team
varied.
Clinic structure and process
Coming to clinic was largely seen as boring and the girls found
being examined as part of routine annual reviews intrusive.
Waiting for painful blood tests (often taken from the back of the
hand) and the waiting times between seeing the different health
professionals at annual reviews were especially disliked. Being
measured (height and weight) in relatively public areas was
particularly unpopular with teenage girls. While some children
relished ‘getting out of school’ as one benefit of having to attend
clinics, it also meant they had to catch up on work missed. For
older children, attending evening clinics sometimes interfered
with after-school activities.
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
Original article
DIABETICMedicine
Table 1 Structures of focus groups
Group Participants
Male Female Age range
1
2
3
4
5
5
6
Children
Children
Young people
Young people
Parents of
younger children
Parents of teenagers
1
5
3
7–11 years
7–11 years
12–16 years
12–16 years
Children < 11 years
2
5
Children > 12 years
4
7
Experiences of communication in consultations
An emergent finding was the perceived differences between the
communication styles of the professions, in particular between
the consulting behaviour of doctors and nurses. Nursing staff
gave simple, supportive and understandable explanations about
diabetes and were ‘always there’ when the patient or parent
needed someone on the end of a phone. There was general
agreement on this in all the discussion groups. Together with
dieticians, the nurses were seen as having a ‘realistic’ approach to
the pressures of everyday situations on diabetes management.
By contrast, communication with the doctors was seen as
formal, rushed and less supportive in all groups. Accounting for
high blood glucose levels made some children uncomfortable, as
they felt they were being held responsible for ‘random’
fluctuations. Non-verbal messages were impersonal—doctors
in formal suits, sitting behind desks, showing greater interest in
biochemical results or previous medical records than in the child
and arranging further tests or appointments without
consultation. Two of the younger boys thought perhaps the
doctors were in a hurry to leave. If doctors spent a long time
reading medical records, it appeared they might not be in full
possession of the facts. Some children felt the doctors talked
down to them, whereas others said they had been treated like
adults but then could not understand the doctor. Some felt ‘put
on the spot’ by attempts to include them in the conversation and
teenagers were especially sensitive to being asked questions about
their personal lives if the doctors did not appear genuinely
interested.
All four groups of children wanted more constructive talk
about ways to improve glucose readings. They found it easier to
relax and talk to nurses in general, and this was especially so if the
nurse had supported the family from diagnosis. All participants
disliked the lack of continuity with doctors and wanted to see the
same doctor each time they attended (although, as one younger
boy pointed out, if you did not like a particular doctor, it was
good to have alternatives). Having other people present was also
disliked (for example, medical or nursing students), but the
children and teenagers did not feel able to refuse or sometimes
were not asked for their consent. Most teenagers and children felt
disengaged from the management decisions doctors made with
their parents—then, when a new regimen did not work, or a new
insulin pen was more painful, they felt annoyed (Fig. 2).
Examples were given of follow-up appointments being made
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
The first thing they say to you when you come in, isn’t it, jump on the
scales... you’re like hoping nobody’s walking past when they write you
down on the chart. Girl, aged 16 years
It’s just questions, questions, questions and it’s just like everything is
being written down, taken notes, like your whole life sort of like being
noted down and I don’t like it. Girl, aged 15 years
I don’t like it when I have to talk to the nurse. They make you say more
than you want to, and you find it hard to look right in their eyes. Yes,
you feel like, I’m scared (giggles). Boy aged 9 years
Sometimes when I go into the consultant’s room, I basically sit there and they
say lots of stuff you don’t understand and you try to say something but then
your parents just say shhhhh! You can, so you can’t say anything. They come
out and say, oh that was good, did you understand that, you say no, they say,
you should have asked them, and then you say, oh you didn’t let me, they say
rubbish! Boy, aged 10 years
If they like, if we should put your insulin up, they say to you, how do you feel
about that, and it’s like what am I meant to say to that, it’s like you don’t feel
that there’s much option. Girl, aged 13 years
...it’s like they’re learning with you, and you don’t need that, you need
someone who already knows and can give you some sort of guidance.
Girl, aged 15 years
...it would be good if they were actually diabetic, cause then they’d
understand how you felt instead of pretending they do. Boy, aged
14 years
FIGURE 2 Typical clinic encounters.
without reference to the child and repetition of tests without
acknowledging the child’s assertion that these had already been
performed.
However, especially in the discussion groups with younger
children, there was a sense of inevitability and acceptance
regarding their peripheral status in consultations with doctors.
They did not really want to become more involved in interactions
for which they did not feel equipped to participate.
Experiences of having diabetes as a child or teenager
The main themes developed from discussion of daily living with
diabetes were the absolute controlling influence of diabetes on
everything they did, the tedium of blood glucose monitoring and
the lack of understanding at school of the effects of fluctuating
blood glucose concentrations on children and young people.
The controlling effect of diabetes on day-to-day activities
Children were managing their own insulin injections and glucose
monitoring from an early age, with all of the younger age groups
giving their own insulin and most of them checking blood glucose
as well. High blood glucose concentrations were associated with
feeling ‘high’, mood swings and overactivity, and low levels
caused lethargy, headache and extreme tiredness. The apparent
random nature of variable blood glucose concentrations made
some children feel frustrated and out of control, as they could not
plan or predict how the day would unfold, even although they
were testing and injecting regularly. Sometimes, these blood
glucose variations stopped them from activities such as
swimming, attending after-school sports or clubs, going to
football matches and walking home from school.
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User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
Blood glucose monitoring
There was emphatic agreement in all children’s groups that they
did not like checking blood glucose and liked having to record
their levels even less. Most said they resented the time it took to
write down both the glucose test result and insulin dosage in their
charts. When asked for the recordings at clinics, many admitted
giving evasive answers or ‘forgetting’ their booklet on purpose.
Some used the memory on the monitor to collect their data and
put them into their record books at regular intervals, and a few
admitted to making up readings. While most of the children and
teenagers were aware that the readings were needed for the
recognition of patterns of high or low blood glucose
concentrations, most did not use the data to look for these
interpretations themselves and some did not understand why
these data were needed. Recording blood glucose levels was
therefore felt to be a thankless and mostly needless chore. The
discussion groups with teenage and young girls voiced feelings of
being a ‘disappointment’ to parents and healthcare professionals,
particularly when blood glucose results were high or they had put
on weight (Fig. 3).
The way schools reacted to children with diabetes (Fig. 4)
As so much of children’s day-to-day experience includes time
spent in school, the interface between diabetes management and
school inevitably came up. Participants in the teenager groups
agreed that it was tiresome to continually have to explain their
diet, blood testing and insulin routines to others at school and
bemoaned a general lack of knowledge about Type 1 diabetes.
Younger children had to come to terms with restrictions on
sweets and chocolate, while watching their friends and peers eat
them on a daily basis. Children had been given books which
emphasized that having diabetes did not make them different, but
this did not concur with how they felt, with exclusions from
sports and treats, and intense memories of hospitalizations and
Children
And if they’re high, I don’t wanna write it down, I don’t want my mum to see it,
yeah I think mum is worse than the doctors… it just makes me feel really
upset and down, cause I know if I go and tell my mum she will be in a bit of a
mood or disappointed with me for like, not controlling myself when it comes to
food—I’d just like never to do blood sugars again. Girl, aged 16 years
If you don’t write them down it’s not, they don’t shout at you, it’s just they look
a bit disappointed and it’s like it’s worse than being shouted at. Girl, aged
15 years
Parents
When I actually flicked through her monitor I just didn’t believe that she’d lie to
me that constantly. Mother of 12-year-old girl
She’s had the opportunity to have monitors and she hasn’t done it… I mean
diabetes is just something she has to deal with and she only deals with it
when she has to. She doesn’t want to do it a quarter of an hour before a meal
because that makes her meal such an issue… I mean I’ll nag her but it makes
no difference. It just causes tension the whole time. Mother of 14-year-old girl
Having to keep an eye on that all the time is a real pain, because it’s us who
are worrying about the future rather than them. They are not worried about at
the moment, are they? They are just thinking. ‘Oh shut up’. Mother of 15-yearold boy
FIGURE 3 Home blood sugar measurements.
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As a reward in school we were given sweets. But she stopped in front of me
and said ‘I don’t know whether you’re allowed to have them’ so she didn’t give
me any! Girl, aged 15 years
I almost got my pump confiscated once because the teacher thought it was an
mp3 player and she only realized when there was like a tube attached and
she was pulling it and she was going, why isn’t it coming off? I was like,
because it’s attached. Girl, aged 13 years
And then you leave it to the last moment, you’re walking up the steps like, to
get to your locker and you’re like falling all over the place. Girl, aged 15 years
I was having a hypo and the teacher didn’t believe me… She was ‘why aren’t
you doing your work?’ She kept shouting at me. I just got up and shouted
‘shut up’ and I got a detention for it. Boy, aged 12 years
I fainted on my desk once in school ‘cause I forgot to eat lunch… apparently
just like hit the desk and I broke my nose while I was doing it. The teacher
was trying to wake me up and didn’t know what was happening, she thought
I’d gone to sleep, so they phoned my parents. Boy, aged 13 years
In year 9 you do a lot of work on diet, healthy eating and everything, and it
always says in all the booklets if you eat too much sugar, you will become
diabetic, and everyone stared at me like you’ve eaten so much that you’ve
become diabetic, and it’s like, no. Girl, aged 13 years
In primary school my friends were like, oh I wish I had diabetes, and I was like
no you really, you really don’t, (yeah) everything in it is horrible. Girl, aged
15 years
FIGURE 4 School experiences.
injections. Some children described teachers who had been
unhelpful and unsympathetic. For example, teachers would
question how long it should take them to inject, and the need for
frequent toilet breaks. A couple of older girls said that, even when
they were aware of developing hypoglycaemia, they tried to hold
out until the end of the lesson in order not to disrupt classes or
become the focus of attention. Children felt that teachers often
had no idea how hypoglycaemic attacks should be managed.
Sometimes children were left to sort it out for themselves (Fig. 4).
Parents and children requested greater dialogue between
schools and paediatric diabetes services to raise both awareness
and skills.
Classmates were not always sympathetic either—for example,
in one case, a class ‘rule’ that forced children to explain in public
why they needed to go to the toilet resulted in other children
claiming they too had diabetes and needed to go.
Further themes arising from the parents’ focus groups
The most difficult aspects of having a child with diabetes were
witnessing the discomfort of needles and the constant vigilance
on injecting and monitoring blood glucose levels. This was
described as tiring, frustrating and a continuing grind. Parents of
teenagers said that finding their child was capable of ‘forgetting’
to check blood glucose levels made them question their ability to
trust their child (Fig. 3).
Parents thought the spontaneity of childhood was lost through
diabetes. For some, the fear of hypoglycaemic attacks while their
children were out meant they did not allow them to go on
sleepovers or impromptu outings. Issues such as school trips,
alcohol and smoking worried many of the parents of older
children. The difficulty of deciding when to treat them as
‘normal’, ‘special’ or ‘different’ needed constant evaluation and
re-calibration.
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
Original article
Many parents said they had used the Internet, support groups
and Diabetes UK to get information on new advances in diabetes
management. When asked about suggestions for improvement,
some parents wanted clinic staff to be more forthcoming about
cutting-edge innovations. A few parents expressed concerns that
staff were possibly constrained by cost considerations and
appeared resistant to new ideas.
However, all parents expressed very positive views about the
diabetes specialist nurses. Some parents described how nurses
had lived through the initial diagnosis period with them
(described by one parent as if she had been ‘hit by a train’) and
that shared significant life experience was very important. Again,
doctors were seen as formal and distant and some parents
questioned their usefulness in a clinic setting. As turnover of
doctors was high, some parents felt they had to explain
themselves over and over to ‘new’ trainee doctors, who often
gave the impression that they were less knowledgeable than the
parents, resulting in some loss of confidence in their ability to
manage their children’s diabetes efficiently [9]. General
practitioners and hospital ward staff inspired even less
confidence.
Conclusions
This study has described patients’ and parents’ experiences of the
paediatric diabetes clinic and their connections with the day-today problems of living with diabetes at home and at school.
Children and young people described the inflexibility of the clinic
and school processes that impinge on their lives with diabetes. In
addition, the data highlight the inhibitory effect of diabetes on
spontaneous activities and the development of independence in
growing up.
There are considerable pressures on children and young people
with diabetes, which can be overlooked in busy clinic settings.
Additional barriers to effective communication include duration
and frequency of contact, gender, perceived attitudes to children
and adolescents and the presence of other people in the consulting
room. This results in children and adolescents taking a passive
role in consultations, reluctant to raise personal or sensitive issues
or to ask questions that might reveal poor adherence [10].
The findings in this study relate to children attending a single
paediatric diabetes centre in the UK and therefore may not be
applicable to other centres. The relatively small sample size and
the purposive recruitment methodology are potential limitations
that could reduce the generalizability of the results and the issues
that arise from the results. However, the recurrence of similar
findings across the focus groups suggests that the themes were
explored to near saturation. In addition, some of our findings,
such as the rigour expected by clinicians of day-to-day blood
glucose control and the dissonance this had with families’
expectations of childhood and growing up, have also been
reported in previous studies [11].
Health professionals are expected to work in partnership with
young people [12] and their parents, but often lack the
communication techniques with which to engage both together
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
DIABETICMedicine
[13,14] in the discussion and management of the child’s illness.
This is particularly important when applied to the care of chronic
conditions such as Type 1 diabetes, where day-to-day selfmanagement involving children and their families is crucial in
maintaining optimal control and good clinical outcomes. A
recent survey showed that 16% of doctors, nurses and dieticians
working in UK paediatric diabetes services had had no training in
communication skills and 47% had had no training since
graduating [15]. The conflict between achieving biomedical
outcomes while acknowledging and listening to children’s daily
experiences (referred to as the patient’s ‘lifeworld’ [16]) is often
unequal, resulting in suppression of their contextualized
accounts and a reduction in their autonomy and engagement.
This approach ignores and contrasts with the considerable role of
children in their own diabetes management [11]. Giving advice
that does not fit with day-to-day reality can be ignored and lack of
continuity at clinic appointments makes it difficult for children
and young people to build an ongoing relationship of trust with
health professionals [9]. Skills-based approaches that more
actively engage patients in their consultation (e.g. motivational
interviewing [17]) can facilitate behavioural changes and
improve glycaemic control in teenagers with diabetes, but takes
time to do and requires specialist input [18].
A direct consequence of the insights gained from the focus
groups has been the development of an interactive agenda-setting
tool within the learning programme that is being evaluated by the
DEPICTED trial. The aim of this tool is to ensure that everyone in
the consultation can raise issues that are important to them.
The difference in experience of consulting with trainee doctors
as compared with nurses is probably influenced by the frequent
o
Sharing and setting agendas
o Check you know what YOU want to get from the consultation—
but remember that in order to do that you need to address the
families’ agendas as well
o Concentrate less on the negative aspects of biochemical
values—be prepared to be flexible and work with the child’s
needs
o Take gender, age, developmental level of the child into account.
Try to understand the child/parents’ journey; e.g. determine what
the child’s issues are likely to be—school, sleepovers, sport,
social activities, etc.
o
Attitudes and atmosphere
o Read the clinical notes before the family come in
o Decrease formality and distance—let the child decide where to
sit
o Appear less busy
o Use your own style to get to know the child a little first. Just
saying ‘how’s school?’ isn’t good enough
o You can be authoritative without being authoritarian
o Be realistic in your expectations of the child and his/her family
o You can create a relationship in which you are still approachable
and seen to be realistic while still emphasizing the importance of
improving self-management practices such as blood sugar
measurements
o
Show respect for the child/adolescent
o Show the child that your interest is genuine
o Remember that children find it difficult to accept being
examined—always ask for consent and ensure the child knows
what you are going to do.
o Ensure dignity and privacy for the child
o Attempt to ensure continuity if at all possible
FIGURE 5 A conceptual approach to children in paediatric clinics—the SAS
approach.
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moves that trainee doctors have to make during their training and
the little chance they have to develop continuity of care or
specialist expertise with specific patient groups. Families do not
know of these factors and how they might impact on consulting
styles and confidence in consulting. The challenge to clinic design
is to find ways of integrating trainee doctors into clinic settings in
ways that help them overcome these obstacles and focus their
interpersonal skills with children and their families. Many of the
themes developed from our data are familiar, but the picture they
paint in paediatric diabetes clinics can be developed to produce
guidance in the form of a ‘conceptual approach’ for professionals
working in a paediatric context in the UK (Fig. 5). This approach
has been informed by information learnt from the qualitative
analysis of the data, combined with the researchers’ ongoing
clinical experience of working with children in clinic settings
(KH, SC and JG).
User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
3
4
5
6
7
Competing interests
8
Nothing to declare.
9
Acknowledgements
The authors are grateful to the service users (children, teenagers
and parents) who participated so constructively in this research.
We are also grateful to the members of staff who facilitated access
to their service users and hosted the research. We are grateful to
NIHR Health Technology Assessment Programme for their
funding and ongoing support for the DEPICTED Study. We
would also like to convey our thanks to our research
administrator Mrs Veronica Dunning for her work in
transcribing recordings. The authors acknowledge the support
of the South East Wales Trials Unit and its funding from the
Wales Assembly Government through the National Institute of
Social Care and Health Research (NISCHR).
The authors confirm that all patient ⁄ personal identifiers have
been removed or disguised so the patients or persons described
are not identifiable and cannot be identified through the details
of the story.
10
11
12
13
14
15
16
17
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ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
DOI: 10.1111/j.1464-5491.2011.03292.x
Article: Care Delivery
The experiences of children and their parents in
paediatric diabetes services should inform the
development of communication skills for healthcare staff
(the DEPICTED Study)
K. Hawthorne, K. Bennert*, L. Lowes, S. Channon†, M. Robling and J. W. Gregory on behalf
of the DEPICTED Study team
Cardiff University, Cardiff, *Bristol University, Bristol and †Cardiff and Vale University Local Health Board, Cardiff, UK
Accepted 14 March 2011
Abstract
The aims of this study were to describe users’ experience of paediatric diabetes services to inform development of an
intervention to improve communication between staff and patients in secondary care within a wider study (the DEPICTED
Study).
Aims
Methods adapted for paediatric settings were used to set up six audio-recorded focus discussion groups with a total
of 32 participants. Transcriptions and notes were coded thematically (supported by NVivo software) and analytic themes
developed with discussion between researchers.
Methods
Three main themes developed: the lack of two-way conversation about glycaemic control in clinic settings; the
restricting experience of living with diabetes; and the difficult interactions around diabetes the children had with their schools.
Doctors in particular were seen as struggling to link these themes of everyday life in their consultations with children and their
parents. Children felt marginalized in clinics, despite active involvement in their own blood glucose management at home.
Results
Health professionals need to balance a requirement for good glycaemic control with realism and appreciation of
their patients’ efforts. There is a need for a systematic approach to consulting, in particular using agenda setting to ensure that the
issues of both the patient and the professional are addressed. A framework for a conceptual approach is discussed. How a patient
is involved is as important as what is communicated during a consultation.
Conclusions
Diabet. Med. 28, 1103–1108 (2011)
Keywords
children, patient experience, qualitative methods, teenagers, Type 1 diabetes
Introduction
Type 1 diabetes is the most common metabolic disorder of the
young in the UK [1] and the implications of its diagnosis in
childhood on day-to-day activities, schooling and social life are
significant. The target for long-term glycaemic control is an
HbA1c of 58 mmol ⁄ mol (7.5%) or less, without frequent
disabling hypoglycaemia [2]. Coming to terms with the
diagnosis and the challenges of growing up are often marked
by poor blood glucose control in up to 30% of children with
diabetes [3]. Psychosocial support, such as supported problem
Correspondence to: Dr Kamila Hawthorne, Department of Primary Care and
Public Health, Cardiff University, 3rd floor Neuadd Meirionnydd, Heath Park,
Cardiff CF14 4XN, UK. E-mail: HawthorneK@cardiff.ac.uk
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
solving or structured behavioural intervention may improve
psychological well-being and glycaemic control [3], but is a
scarce resource that is costly in time and money.
Recent guidance from the General Medical Council has
emphasized the value of effective communication skills in all
healthcare interactions with young people [4]. The relative lack
of research in this area within diabetes is acknowledged and there
has been recent interest in objective and valid assessment of these
skills, which are agreed to include relationship building,
consultation structuring and initiation, information gathering
and giving with shared decision making and appropriate closure
[5].
The DEPICTED study was commissioned by the NIHR
Health Technology Assessment Programme (HTA) to develop a
training programme to improve consultation skills within the
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DIABETICMedicine
context of routine care by the multidisciplinary diabetes team [6].
In the developmental phase of this trial, a series of focus group
discussions were set up with children and their parents attending
paediatric diabetes clinics, to describe their experiences of these
services, feeding into the development of the intervention for the
main trial. This knowledge would set the context and provide
ideas for a training package to improve psychosocial support
within routine paediatric diabetes clinic appointments.
Subjects and methods
Focus group methods were adapted for paediatric settings,
using previously published guidelines [7,8]. Same-gender and
related age-banded discussion groups were arranged. Six audiorecorded focus groups were co-moderated by two non-clinical
researchers. The lead qualitative researcher (KB) specified
clinical characteristics of potential participants (duration since
diagnosis, treatment regimen, diabetes well controlled or not) to
achieve maximum variation samples within each group. Patients
matching these clinical characteristics [parents, children (aged
7–11 years) and young people (aged 12–16 years)] were then
approached by a paediatric diabetes specialist nurse for their
consent to be contacted by the researcher. Those who agreed
were sent age-appropriate written information sheets, consent
forms for parents and assent forms for children, followed up by a
telephone call of introduction from the researcher to explain the
nature of the focus groups and deal with any concerns or queries.
The paediatric diabetes clinic from which participants were
recruited was in a large teaching hospital. Continuity of care was
provided by two consultant paediatric endocrinologists, a
paediatric diabetes nursing team and a paediatric dietician.
Specialist registrars were attached to the clinical team on
12-month rotations, which also taught nursing and medical
students. Clinic appointments of 20 min were generally offered
every 4 months for those with established diabetes.
A diabetes specialist nurse familiar to the participants was
available at the venue to answer any medical concerns that arose
at the time the groups were held. The nurse was not present at the
discussions, nor privy to the focus group data. Consent and
assent forms were completed and returned before the focus
groups started. All participants were told that they could take a
break or leave the group at any time without having to give a
reason. All parents, those participating and those accompanying
their children ⁄ young people to the venue, completed an
information sheet documenting their own age, occupation,
family size, child’s age, duration of diabetes, other family
members with diabetes and how well they believed diabetes
management was going at that time for their child.
A topic guide was designed to direct the discussions (Fig. 1).
To encourage openness, the focus group discussions took place
without parents being present in the room. A separate discussion
group was held for parents. Basic ground rules for the conduct of
the group discussion were introduced, followed by icebreaker
games for the children’s groups. Each participant selected from a
range of images depicted on postcards to represent a topic related
1104
User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
(i)
(ii)
(iii)
(iv)
(v)
What is the hardest thing about living with diabetes?
What would you most like to change about living with diabetes?
What is most helpful about the diabetes clinic?
What would you most like to change about the diabetes clinic?
What is communication like with the clinic staff, and how would you
want it to be?
FIGURE 1 Focus group discussion topics.
to diabetes they could then discuss. One researcher assumed the
role of the main facilitator while the other provided ongoing
summaries, logged comments and handled recording equipment
and refreshments.
Group discussions lasted between 66 and 98 min, including a
break with refreshments. They were transcribed verbatim into
NVivo (QSR International (UK) Ltd., Southport, UK), a
qualitative software package. Transcripts were coded and
emerging themes identified by one researcher (KB). Two others
(KH and SC) then read the transcripts independently and agreed
the coding and themes. Themes were further developed and
linked through discussion between researchers. All three
researchers (KB, KH and SC) were experienced in qualitative
research methodology, and three (KH, SC and JG) had a clinical
background, so that clinical and non-clinical perspectives could
be combined.
Results
Forty-eight patients and parents were initially invited to
participate. Of those, 39 returned ‘consent to contact’ slips and
32 individuals eventually participated in one of the six focus
groups held (Table 1). The range of duration of diabetes in
participating patients was 18 months–7 years.
There were no important differences in the identification of
sub-themes by those involved in the thematic analysis.
Experiences from paediatric diabetes clinics
The main themes arising from this section of the discussions were
the experience of the clinic process and how communication
with different professionals within the paediatric diabetes team
varied.
Clinic structure and process
Coming to clinic was largely seen as boring and the girls found
being examined as part of routine annual reviews intrusive.
Waiting for painful blood tests (often taken from the back of the
hand) and the waiting times between seeing the different health
professionals at annual reviews were especially disliked. Being
measured (height and weight) in relatively public areas was
particularly unpopular with teenage girls. While some children
relished ‘getting out of school’ as one benefit of having to attend
clinics, it also meant they had to catch up on work missed. For
older children, attending evening clinics sometimes interfered
with after-school activities.
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
Original article
DIABETICMedicine
Table 1 Structures of focus groups
Group Participants
Male Female Age range
1
2
3
4
5
5
6
Children
Children
Young people
Young people
Parents of
younger children
Parents of teenagers
1
5
3
7–11 years
7–11 years
12–16 years
12–16 years
Children < 11 years
2
5
Children > 12 years
4
7
Experiences of communication in consultations
An emergent finding was the perceived differences between the
communication styles of the professions, in particular between
the consulting behaviour of doctors and nurses. Nursing staff
gave simple, supportive and understandable explanations about
diabetes and were ‘always there’ when the patient or parent
needed someone on the end of a phone. There was general
agreement on this in all the discussion groups. Together with
dieticians, the nurses were seen as having a ‘realistic’ approach to
the pressures of everyday situations on diabetes management.
By contrast, communication with the doctors was seen as
formal, rushed and less supportive in all groups. Accounting for
high blood glucose levels made some children uncomfortable, as
they felt they were being held responsible for ‘random’
fluctuations. Non-verbal messages were impersonal—doctors
in formal suits, sitting behind desks, showing greater interest in
biochemical results or previous medical records than in the child
and arranging further tests or appointments without
consultation. Two of the younger boys thought perhaps the
doctors were in a hurry to leave. If doctors spent a long time
reading medical records, it appeared they might not be in full
possession of the facts. Some children felt the doctors talked
down to them, whereas others said they had been treated like
adults but then could not understand the doctor. Some felt ‘put
on the spot’ by attempts to include them in the conversation and
teenagers were especially sensitive to being asked questions about
their personal lives if the doctors did not appear genuinely
interested.
All four groups of children wanted more constructive talk
about ways to improve glucose readings. They found it easier to
relax and talk to nurses in general, and this was especially so if the
nurse had supported the family from diagnosis. All participants
disliked the lack of continuity with doctors and wanted to see the
same doctor each time they attended (although, as one younger
boy pointed out, if you did not like a particular doctor, it was
good to have alternatives). Having other people present was also
disliked (for example, medical or nursing students), but the
children and teenagers did not feel able to refuse or sometimes
were not asked for their consent. Most teenagers and children felt
disengaged from the management decisions doctors made with
their parents—then, when a new regimen did not work, or a new
insulin pen was more painful, they felt annoyed (Fig. 2).
Examples were given of follow-up appointments being made
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
The first thing they say to you when you come in, isn’t it, jump on the
scales... you’re like hoping nobody’s walking past when they write you
down on the chart. Girl, aged 16 years
It’s just questions, questions, questions and it’s just like everything is
being written down, taken notes, like your whole life sort of like being
noted down and I don’t like it. Girl, aged 15 years
I don’t like it when I have to talk to the nurse. They make you say more
than you want to, and you find it hard to look right in their eyes. Yes,
you feel like, I’m scared (giggles). Boy aged 9 years
Sometimes when I go into the consultant’s room, I basically sit there and they
say lots of stuff you don’t understand and you try to say something but then
your parents just say shhhhh! You can, so you can’t say anything. They come
out and say, oh that was good, did you understand that, you say no, they say,
you should have asked them, and then you say, oh you didn’t let me, they say
rubbish! Boy, aged 10 years
If they like, if we should put your insulin up, they say to you, how do you feel
about that, and it’s like what am I meant to say to that, it’s like you don’t feel
that there’s much option. Girl, aged 13 years
...it’s like they’re learning with you, and you don’t need that, you need
someone who already knows and can give you some sort of guidance.
Girl, aged 15 years
...it would be good if they were actually diabetic, cause then they’d
understand how you felt instead of pretending they do. Boy, aged
14 years
FIGURE 2 Typical clinic encounters.
without reference to the child and repetition of tests without
acknowledging the child’s assertion that these had already been
performed.
However, especially in the discussion groups with younger
children, there was a sense of inevitability and acceptance
regarding their peripheral status in consultations with doctors.
They did not really want to become more involved in interactions
for which they did not feel equipped to participate.
Experiences of having diabetes as a child or teenager
The main themes developed from discussion of daily living with
diabetes were the absolute controlling influence of diabetes on
everything they did, the tedium of blood glucose monitoring and
the lack of understanding at school of the effects of fluctuating
blood glucose concentrations on children and young people.
The controlling effect of diabetes on day-to-day activities
Children were managing their own insulin injections and glucose
monitoring from an early age, with all of the younger age groups
giving their own insulin and most of them checking blood glucose
as well. High blood glucose concentrations were associated with
feeling ‘high’, mood swings and overactivity, and low levels
caused lethargy, headache and extreme tiredness. The apparent
random nature of variable blood glucose concentrations made
some children feel frustrated and out of control, as they could not
plan or predict how the day would unfold, even although they
were testing and injecting regularly. Sometimes, these blood
glucose variations stopped them from activities such as
swimming, attending after-school sports or clubs, going to
football matches and walking home from school.
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User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
Blood glucose monitoring
There was emphatic agreement in all children’s groups that they
did not like checking blood glucose and liked having to record
their levels even less. Most said they resented the time it took to
write down both the glucose test result and insulin dosage in their
charts. When asked for the recordings at clinics, many admitted
giving evasive answers or ‘forgetting’ their booklet on purpose.
Some used the memory on the monitor to collect their data and
put them into their record books at regular intervals, and a few
admitted to making up readings. While most of the children and
teenagers were aware that the readings were needed for the
recognition of patterns of high or low blood glucose
concentrations, most did not use the data to look for these
interpretations themselves and some did not understand why
these data were needed. Recording blood glucose levels was
therefore felt to be a thankless and mostly needless chore. The
discussion groups with teenage and young girls voiced feelings of
being a ‘disappointment’ to parents and healthcare professionals,
particularly when blood glucose results were high or they had put
on weight (Fig. 3).
The way schools reacted to children with diabetes (Fig. 4)
As so much of children’s day-to-day experience includes time
spent in school, the interface between diabetes management and
school inevitably came up. Participants in the teenager groups
agreed that it was tiresome to continually have to explain their
diet, blood testing and insulin routines to others at school and
bemoaned a general lack of knowledge about Type 1 diabetes.
Younger children had to come to terms with restrictions on
sweets and chocolate, while watching their friends and peers eat
them on a daily basis. Children had been given books which
emphasized that having diabetes did not make them different, but
this did not concur with how they felt, with exclusions from
sports and treats, and intense memories of hospitalizations and
Children
And if they’re high, I don’t wanna write it down, I don’t want my mum to see it,
yeah I think mum is worse than the doctors… it just makes me feel really
upset and down, cause I know if I go and tell my mum she will be in a bit of a
mood or disappointed with me for like, not controlling myself when it comes to
food—I’d just like never to do blood sugars again. Girl, aged 16 years
If you don’t write them down it’s not, they don’t shout at you, it’s just they look
a bit disappointed and it’s like it’s worse than being shouted at. Girl, aged
15 years
Parents
When I actually flicked through her monitor I just didn’t believe that she’d lie to
me that constantly. Mother of 12-year-old girl
She’s had the opportunity to have monitors and she hasn’t done it… I mean
diabetes is just something she has to deal with and she only deals with it
when she has to. She doesn’t want to do it a quarter of an hour before a meal
because that makes her meal such an issue… I mean I’ll nag her but it makes
no difference. It just causes tension the whole time. Mother of 14-year-old girl
Having to keep an eye on that all the time is a real pain, because it’s us who
are worrying about the future rather than them. They are not worried about at
the moment, are they? They are just thinking. ‘Oh shut up’. Mother of 15-yearold boy
FIGURE 3 Home blood sugar measurements.
1106
As a reward in school we were given sweets. But she stopped in front of me
and said ‘I don’t know whether you’re allowed to have them’ so she didn’t give
me any! Girl, aged 15 years
I almost got my pump confiscated once because the teacher thought it was an
mp3 player and she only realized when there was like a tube attached and
she was pulling it and she was going, why isn’t it coming off? I was like,
because it’s attached. Girl, aged 13 years
And then you leave it to the last moment, you’re walking up the steps like, to
get to your locker and you’re like falling all over the place. Girl, aged 15 years
I was having a hypo and the teacher didn’t believe me… She was ‘why aren’t
you doing your work?’ She kept shouting at me. I just got up and shouted
‘shut up’ and I got a detention for it. Boy, aged 12 years
I fainted on my desk once in school ‘cause I forgot to eat lunch… apparently
just like hit the desk and I broke my nose while I was doing it. The teacher
was trying to wake me up and didn’t know what was happening, she thought
I’d gone to sleep, so they phoned my parents. Boy, aged 13 years
In year 9 you do a lot of work on diet, healthy eating and everything, and it
always says in all the booklets if you eat too much sugar, you will become
diabetic, and everyone stared at me like you’ve eaten so much that you’ve
become diabetic, and it’s like, no. Girl, aged 13 years
In primary school my friends were like, oh I wish I had diabetes, and I was like
no you really, you really don’t, (yeah) everything in it is horrible. Girl, aged
15 years
FIGURE 4 School experiences.
injections. Some children described teachers who had been
unhelpful and unsympathetic. For example, teachers would
question how long it should take them to inject, and the need for
frequent toilet breaks. A couple of older girls said that, even when
they were aware of developing hypoglycaemia, they tried to hold
out until the end of the lesson in order not to disrupt classes or
become the focus of attention. Children felt that teachers often
had no idea how hypoglycaemic attacks should be managed.
Sometimes children were left to sort it out for themselves (Fig. 4).
Parents and children requested greater dialogue between
schools and paediatric diabetes services to raise both awareness
and skills.
Classmates were not always sympathetic either—for example,
in one case, a class ‘rule’ that forced children to explain in public
why they needed to go to the toilet resulted in other children
claiming they too had diabetes and needed to go.
Further themes arising from the parents’ focus groups
The most difficult aspects of having a child with diabetes were
witnessing the discomfort of needles and the constant vigilance
on injecting and monitoring blood glucose levels. This was
described as tiring, frustrating and a continuing grind. Parents of
teenagers said that finding their child was capable of ‘forgetting’
to check blood glucose levels made them question their ability to
trust their child (Fig. 3).
Parents thought the spontaneity of childhood was lost through
diabetes. For some, the fear of hypoglycaemic attacks while their
children were out meant they did not allow them to go on
sleepovers or impromptu outings. Issues such as school trips,
alcohol and smoking worried many of the parents of older
children. The difficulty of deciding when to treat them as
‘normal’, ‘special’ or ‘different’ needed constant evaluation and
re-calibration.
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
Original article
Many parents said they had used the Internet, support groups
and Diabetes UK to get information on new advances in diabetes
management. When asked about suggestions for improvement,
some parents wanted clinic staff to be more forthcoming about
cutting-edge innovations. A few parents expressed concerns that
staff were possibly constrained by cost considerations and
appeared resistant to new ideas.
However, all parents expressed very positive views about the
diabetes specialist nurses. Some parents described how nurses
had lived through the initial diagnosis period with them
(described by one parent as if she had been ‘hit by a train’) and
that shared significant life experience was very important. Again,
doctors were seen as formal and distant and some parents
questioned their usefulness in a clinic setting. As turnover of
doctors was high, some parents felt they had to explain
themselves over and over to ‘new’ trainee doctors, who often
gave the impression that they were less knowledgeable than the
parents, resulting in some loss of confidence in their ability to
manage their children’s diabetes efficiently [9]. General
practitioners and hospital ward staff inspired even less
confidence.
Conclusions
This study has described patients’ and parents’ experiences of the
paediatric diabetes clinic and their connections with the day-today problems of living with diabetes at home and at school.
Children and young people described the inflexibility of the clinic
and school processes that impinge on their lives with diabetes. In
addition, the data highlight the inhibitory effect of diabetes on
spontaneous activities and the development of independence in
growing up.
There are considerable pressures on children and young people
with diabetes, which can be overlooked in busy clinic settings.
Additional barriers to effective communication include duration
and frequency of contact, gender, perceived attitudes to children
and adolescents and the presence of other people in the consulting
room. This results in children and adolescents taking a passive
role in consultations, reluctant to raise personal or sensitive issues
or to ask questions that might reveal poor adherence [10].
The findings in this study relate to children attending a single
paediatric diabetes centre in the UK and therefore may not be
applicable to other centres. The relatively small sample size and
the purposive recruitment methodology are potential limitations
that could reduce the generalizability of the results and the issues
that arise from the results. However, the recurrence of similar
findings across the focus groups suggests that the themes were
explored to near saturation. In addition, some of our findings,
such as the rigour expected by clinicians of day-to-day blood
glucose control and the dissonance this had with families’
expectations of childhood and growing up, have also been
reported in previous studies [11].
Health professionals are expected to work in partnership with
young people [12] and their parents, but often lack the
communication techniques with which to engage both together
ª 2011 The Authors.
Diabetic Medicine ª 2011 Diabetes UK
DIABETICMedicine
[13,14] in the discussion and management of the child’s illness.
This is particularly important when applied to the care of chronic
conditions such as Type 1 diabetes, where day-to-day selfmanagement involving children and their families is crucial in
maintaining optimal control and good clinical outcomes. A
recent survey showed that 16% of doctors, nurses and dieticians
working in UK paediatric diabetes services had had no training in
communication skills and 47% had had no training since
graduating [15]. The conflict between achieving biomedical
outcomes while acknowledging and listening to children’s daily
experiences (referred to as the patient’s ‘lifeworld’ [16]) is often
unequal, resulting in suppression of their contextualized
accounts and a reduction in their autonomy and engagement.
This approach ignores and contrasts with the considerable role of
children in their own diabetes management [11]. Giving advice
that does not fit with day-to-day reality can be ignored and lack of
continuity at clinic appointments makes it difficult for children
and young people to build an ongoing relationship of trust with
health professionals [9]. Skills-based approaches that more
actively engage patients in their consultation (e.g. motivational
interviewing [17]) can facilitate behavioural changes and
improve glycaemic control in teenagers with diabetes, but takes
time to do and requires specialist input [18].
A direct consequence of the insights gained from the focus
groups has been the development of an interactive agenda-setting
tool within the learning programme that is being evaluated by the
DEPICTED trial. The aim of this tool is to ensure that everyone in
the consultation can raise issues that are important to them.
The difference in experience of consulting with trainee doctors
as compared with nurses is probably influenced by the frequent
o
Sharing and setting agendas
o Check you know what YOU want to get from the consultation—
but remember that in order to do that you need to address the
families’ agendas as well
o Concentrate less on the negative aspects of biochemical
values—be prepared to be flexible and work with the child’s
needs
o Take gender, age, developmental level of the child into account.
Try to understand the child/parents’ journey; e.g. determine what
the child’s issues are likely to be—school, sleepovers, sport,
social activities, etc.
o
Attitudes and atmosphere
o Read the clinical notes before the family come in
o Decrease formality and distance—let the child decide where to
sit
o Appear less busy
o Use your own style to get to know the child a little first. Just
saying ‘how’s school?’ isn’t good enough
o You can be authoritative without being authoritarian
o Be realistic in your expectations of the child and his/her family
o You can create a relationship in which you are still approachable
and seen to be realistic while still emphasizing the importance of
improving self-management practices such as blood sugar
measurements
o
Show respect for the child/adolescent
o Show the child that your interest is genuine
o Remember that children find it difficult to accept being
examined—always ask for consent and ensure the child knows
what you are going to do.
o Ensure dignity and privacy for the child
o Attempt to ensure continuity if at all possible
FIGURE 5 A conceptual approach to children in paediatric clinics—the SAS
approach.
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DIABETICMedicine
moves that trainee doctors have to make during their training and
the little chance they have to develop continuity of care or
specialist expertise with specific patient groups. Families do not
know of these factors and how they might impact on consulting
styles and confidence in consulting. The challenge to clinic design
is to find ways of integrating trainee doctors into clinic settings in
ways that help them overcome these obstacles and focus their
interpersonal skills with children and their families. Many of the
themes developed from our data are familiar, but the picture they
paint in paediatric diabetes clinics can be developed to produce
guidance in the form of a ‘conceptual approach’ for professionals
working in a paediatric context in the UK (Fig. 5). This approach
has been informed by information learnt from the qualitative
analysis of the data, combined with the researchers’ ongoing
clinical experience of working with children in clinic settings
(KH, SC and JG).
User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
3
4
5
6
7
Competing interests
8
Nothing to declare.
9
Acknowledgements
The authors are grateful to the service users (children, teenagers
and parents) who participated so constructively in this research.
We are also grateful to the members of staff who facilitated access
to their service users and hosted the research. We are grateful to
NIHR Health Technology Assessment Programme for their
funding and ongoing support for the DEPICTED Study. We
would also like to convey our thanks to our research
administrator Mrs Veronica Dunning for her work in
transcribing recordings. The authors acknowledge the support
of the South East Wales Trials Unit and its funding from the
Wales Assembly Government through the National Institute of
Social Care and Health Research (NISCHR).
The authors confirm that all patient ⁄ personal identifiers have
been removed or disguised so the patients or persons described
are not identifiable and cannot be identified through the details
of the story.
10
11
12
13
14
15
16
17
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