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 behalfof 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
Aims 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 DEPICTEDStudy).
Methods 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 themesdeveloped with discussion between researchers.
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 theirparents. Children felt marginalized in clinics, despite active involvement in their own blood glucose management at home.
Conclusions 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 patientis involved is as important as what is communicated during a consultation. Diabet. Med. 28, 1103–1108 (2011)
children, patient experience, qualitative methods, teenagers, Type 1 diabetes
solving or structured behavioural intervention may improve
psychological well-being and glycaemic control , but is a Type 1 diabetes is the most common metabolic disorder of the scarce resource that is costly in time and money. young in the UK  and the implications of its diagnosis in Recent guidance from the General Medical Council has childhood on day-to-day activities, schooling and social life are emphasized the value of effective communication skills in all significant. The target for long-term glycaemic control is an healthcare interactions with young people . The relative lack HbA of 58 mmol ⁄ mol (7.5%) or less, without frequent of research in this area within diabetes is acknowledged and there
disabling hypoglycaemia . Coming to terms with the has been recent interest in objective and valid assessment of these diagnosis and the challenges of growing up are often marked skills, which are agreed to include relationship building, by poor blood glucose control in up to 30% of children with consultation structuring and initiation, information gathering diabetes . Psychosocial support, such as supported problem and giving with shared decision making and appropriate closure
The DEPICTED study was commissioned by the NIHR
Correspondence to : Dr Kamila Hawthorne, Department of Primary Care and
Health Technology Assessment Programme (HTA) to develop a
Public Health, Cardiff University, 3rd floor Neuadd Meirionnydd, Heath Park, Cardiff CF14 4XN, UK. E-mail: HawthorneK@cardiff.ac.uk ª
training programme to improve consultation skills within the 2011 The Authors. context of routine care by the multidisciplinary diabetes team . 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.
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 audio- recorded 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 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.
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 Experiences of communication in consultations
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.
(i) What is the hardest thing about living with diabetes? (ii) What would you most like to change about living with diabetes? (iii) What is most helpful about the diabetes clinic? (iv) What would you most like to change about the diabetes clinic? (v) What is communication like with the clinic staff, and how would you want it to be?
FIGURE 1 Focus group discussion topics.
DIABETICMedicine User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
Subjects and methods
ª 2011 The Authors.
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.
1 Children 5 7–11 years
6 Parents of teenagers 2
3 Children < 11 years
5 Parents of younger children
4 Young people 5 12–16 years
3 Young people 7 12–16 years
2 Children 4 7–11 years
Group Participants Male Female Age range
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.
FIGURE 2 Typical clinic encounters. Table 1 Structures of focus groups
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
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.
The controlling effect of diabetes on day-to-day activities
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.
Experiences of having diabetes as a child or teenager
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.
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 without reference to the child and repetition of tests without acknowledging the child’s assertion that these had already been performed.
5 Children > 12 years
DIABETICMedicine Original article ª 2011 The Authors. 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 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. 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-year- old boy FIGURE 3 Home blood sugar measurements. 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.
DIABETICMedicine User’s experiences in paediatric diabetes clinics • K. Hawthorne et al.
ª 2011 The Authors. 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 . General practitioners and hospital ward staff inspired even less confidence.
This study has described patients’ and parents’ experiences of the paediatric diabetes clinic and their connections with the day-to- day 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 .
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 .
Health professionals are expected to work in partnership with young people  and their parents, but often lack the communication techniques with which to engage both together [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 self- management 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 . The conflict between achieving biomedical outcomes while acknowledging and listening to children’s daily experiences (referred to as the patient’s ‘lifeworld’ ) 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 . 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 . Skills-based approaches that more actively engage patients in their consultation (e.g. motivational interviewing ) can facilitate behavioural changes and improve glycaemic control in teenagers with diabetes, but takes time to do and requires specialist input .
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
S haring 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
A ttitudes 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
S how 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.
DIABETICMedicine Original articleª 2011 The Authors.
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).
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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.
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).
ª 2011 The Authors.