212 PRACTICAL DIABETES VOL. 28 NO. 5 COPYRIGHT © 2011 JOHN WILEY & SONS

BackgroundDiabetes in children and young people is growing at an alarmingrate of 3–5% per year; it is present-ing at an earlier age and continuesto be a leading cause of prematuredeath in most developed coun-tries.1,2 Cross-sectional studies3,4

report high blood glucose levels fora large majority of children andyoung people, with the UK havingone of the poorest records – only20% of under-16s currently achievethe recommended levels.

To improve outcomes theEuropean SWEET Project has high-lighted the need to improve multi-disciplinary teamworking.1 Globally,the importance of this in healthcare has accelerated over the last 20 years and research has high-lighted its effectiveness in bothacute and chronic settings.5,6 A hallmark of team collaboration isinterdependency with other profes-sionals and being able to combineperceptions and skills to synthesise amore complex and comprehensiveplan of care.7

The management of paediatricdiabetes has changed since publica-tion of the Diabetes Control andComplications Trial8 which foundthat habits acquired in the first yearafter diagnosis are hard to change,

and patients who achieve good glycaemic control in the first fiveyears do better in the longer term.Alongside this, an international systematic review found that clinicattendance, specialist care, and amultidisciplinary team approachwere indicators of glycaemic controlin children and young people withtype 1 diabetes (T1D).9

Access to a multidisciplinaryhealth care team is therefore essen-tial, but a recent survey of 18European paediatric diabetes cen-tres by SWEET1 found significantdifferences in levels of and access tosuch services. Taking the UK as anexample, improvements in paedi-atric diabetes care have been seenover the past decade but there arestill marked deficiencies, mainly withregard to the provision of specialistnurses and psychologists,10 patienteducation,2,11 and transition serv-ices.12,13 These services have suf-fered by their inclusion in generalpaediatric budgets resulting in a lackof investment and staff to deliver theservice.14 Nationally, surveys15 haveilluminated paediatric specialistnurse case-loads above recom-mended levels of 70,16 highlighting acritical strain on resources. Suchfindings emphasise the need toexplore what health professionals at

Short report

A multidisciplinary paediatric diabeteshealth care team: perspectives onadolescent care

AbstractThis paper focuses on a qualitative study of the experiences of a multidisciplinary health careteam caring for adolescents with type 1 diabetes in a hospital in the North West of England. It builds upon previous research which has explored the lived experiences of young peopleand their parents/guardians with the aim of better understanding blood glucose control in thisage group.

Findings emphasise lack of human resources, the importance of effective team working,and the need for meaningful education which acknowledges adolescents’ unique and complexsocial worlds.

Given these findings we are now developing a computer-based ‘Adolescent DiabetesNeeds Assessment Tool’ (ADNAT study), with a view to individualising self-directed educationand support. Copyright © 2011 John Wiley & Sons.

Practical Diabetes 2011; 28(5): 212–215

Key wordsdiabetes; adolescents; team work; qualitative research

J Spencer,PhD, BA, Researcher, University of Chester, Faculty ofHealth and Social Care, Chester, UK

H Cooper,PhD, BNurs, RGN, RHV, PGCE, Professor ofCommunity and Child Health, University of Chester,Faculty of Health and Social Care, Chester, UK

Correspondence to: Dr Joy Spencer, University of Chester, Faculty of Healthand Social Care, Riverside Building, Castle Drive,Chester CH1 1SL, UK; email: joy.spencer@chester.ac.uk

Received: 14 March 2011Accepted in revised form: 28 April 2011

the ‘coal face’ actually feel is hap-pening in practice.

This study aimed to explore theviews of a multidisciplinary diabetesteam from a paediatric hospital inthe North West of England aboutthe care they provide to adolescentswith T1D. It took a qualitativehermeneutic approach17 to exploretheir lived experiences. Interviewswere conducted by a member of theresearch team (HC).

ParticipantsParticipants were recruited purpo-sively from a team responsible forthe care of approximately 300 children and young people with diabetes (0–16 years). Inclusion criteria comprised health profes-sionals who provided care to participants in the preceding phase of our research exploring thelived experiences of adolescentswith T1D and their parents18 toallow for cross-analysis of the data. Participants comprised threegeneral paediatric consultants,three specialist nurses, a specialistdietitian and a general psychologist.Ethical approval was obtained from the Local Paediatric ResearchEthics Committee.

MethodsInterviews were conducted in an ‘in-depth’ manner in 2008 using a semi-structured interview toolaimed at exploring: team working,job role, working with adolescents,management of diabetes in adoles-cence, family care and education.Interviews were audio-recorded and transcribed verbatim. Eachhealth professional (HP) is codednumerically to maintain anonymity,except where a quotation is directlylinked to an identifiable team member when the numerical codeis not given.

Data analysis followed a rigorous,five-step approach underpinned by hermeneutic phenomenology.19

Involvement of two researchers inthe analysis process aimed to givetwo perspectives on the interpreta-tion, thus reducing interpretationbias. Participants were asked to read the final report and all agreedthat it represented the experience of working within this multidiscipli-nary team.

ResultsTeam workingThe team’s approach to carereflected a multidisciplinary modeldespite describing a lack of trainingin this area. The consultants wereseen as the figureheads of the teamand the outreach role of the nurseswas instrumental to understandingthe family context of patients. Teammembers acknowledged the pres-sures resulting from this style ofworking, including personalityclashes and the integration of dif-ferent professional backgroundsand perspectives. Despite this, how-ever, members felt that their voiceswere heard when decisions weremade. Multidisciplinary workingmeant that each team member hada degree of responsibility at alltimes, and maintaining the individ-uality of roles had positive implica-tions for the team as a whole:

‘As a team we are working towardstrying to pick out what people’s strengthsare and using it as an advantage ratherthan a disadvantage’ (HP3).

Regular team meetings wereimportant in enabling reliable com-munication and discussion. Theywere structured to allow fair discus-sion and for each team member togive their perspective.

Adolescent self-managementThe team acknowledged that self-management style was an individ-ual trait across the adolescentpatient group:

‘Some [patients] try to control it …some try to ignore it, and some manage itin their own way and they take whatinformation they want’ (HP2).

Approaches to care were notbased on one specific model, butwere adapted in relation to theneeds of the young people and their families. For example, onenurse described situations in whichshe went against recommendationsin order to prioritise psychosocialwell-being:

‘Twice in all the time that I’ve beenworking I have said to a patient: “don’tblood test”; the words could hardly comeout of my mouth but they had to becausethey felt so guilty and it felt detrimental tothem. I followed it up by saying: “if youwere ill then you must blood test”.’

Communication was importantto enable health professionals to

provide the right care for patients,particularly when some believed that their care did not always address patients’ needs. The teamrecognised that a young person’sfamily has a key influence on dia-betes management:

‘It’s not what we do so much, it’s thedynamics of the family … we can put thesame amount of input into two differentfamilies and have completely differentoutcomes and that is because of how theywork, their outlook on life, their copingstrategies, routines…’ (HP3).

Encouraging independenceThe ethos of care was to equip adolescents with the skills to self-manage their diabetes before transfer to adult services at the ageof 16. This involved decreasingparental involvement within theclinical setting, but some criticisedthis approach:

‘I am thinking that we are doingmore harm than good in removing parent support … I think for a lot ofadolescents that isn’t the right thing todo’ (HP3).

The hindrance that parentalinput could inflict on adolescentindependence was also recognised.One team member advocated theneed to find a balance betweenencouraging autonomy and keepingthe adolescent’s parents involved:

‘I think it’s a question of speaking toyoung people rather than their parents,but yet make their parents feel a part ofwhat is going on’ (HP4).

Most of the health professionalsmentioned that transition serviceswere not meeting their needs ade-quately. In particular, the fact thatthe hospital fed into a large numberof adult clinics made it difficult tomaintain adequate links between theservices.

Meaningful education The team believed that patient edu-cation had to be meaningful to insti-gate adaptation and behaviourchange. It was therefore importantto relate education to aspects of theadolescents’ lives for it to be relevant,as this team member described:

‘You have to put whatever changeinto diabetes management that you areencouraging them to make, into the context of their lives ... it becomes a moremeaningful conversation’ (HP7).

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The nurses found that an effec-tive approach to education deliverywas following up a significant eventwith face-to-face communication.

Limited resourcesAll of the team recognised that careprovision was constrained by limitedresources, including time, fundingand the need to adhere to unrealis-tic government targets, for example:

‘The reality is that we only get 20minutes with patients … we would beable to look after patients much better if we had more time to spend with them’ (HP6).

Large case-loads also meant thatin-depth attention was generallygiven only to those experiencing crisis situations, reflecting an acutetreatment model rather than pre-ventative care. This centre has only2.6 nursing whole time equivalentsfor 300 children.

‘The number one thing I would like isto have more time with my patients and tobe able to see them regularly at home andwork ... This only happens at crisis times’ (HP1).

Government targets were identi-fied as often being unrealistic todeliver when the individual needs ofpatients were acknowledged. As oneperson commented:

‘...NICE guidance is required but it’snot a be all and end all…’ (HP6).

DiscussionThe recommended multidisciplinaryteam approach20–22 was adopted bythe team and worked well to enable aholistic approach to care with clearlydefined roles and responsibilities.Members were able to identify theirown roles and the roles of others asunique within the team, and wereclear that their different perspectiveswere respected and united. Teammeetings enabled regular and effec-tive communication about patients,and leadership by consultants wasimplicit but not overpowering.Meetings were important to rectifyany discrepancies and supported aless hierarchical way of working,while maintaining the leadershipnecessary for team effectiveness.

Participants acknowledged thatadolescents were a complex patientgroup, with individual self-manage-ment styles dependent upon familycontext. Thus, care was centred on

individual family lifestyles and behav-iour. Parents were involved in the care provision process, given thatsuch involvement has been shown to improve adherence in adoles-cence23 and reduce diabetes-relatedhospital admissions.24 Reducingparental involvement was not viewedfavourably by all team members,despite evidence that increased ado-lescent autonomy relieves parentalburden, improves knowledge andconfidence for adolescents, reducesparent-child conflict,12 and in turnimproves adherence25 and glycaemiccontrol.26 In support of the viewsexpressed by team members, studiesexploring differences between a family-centred approach with respon-sibility sharing versus the independ-ent approach have found betterblood glucose outcomes in the former,27,28 suggesting that a similarapproach in the UK may have thepotential to improve outcomes foryoung people with diabetes.

Despite the team feeling that theywere not always able to grasp theneeds of individual patients, our previous research indicated that fam-ilies, in particular parents, felt com-pletely supported by the team in anoutreach context.18 Communicatingwith adolescents at their level andmaking realistic care recommenda-tions enhanced communication andunderstanding between the healthprofessionals and their patients. Thisis positive, as research has found thatadolescents value health profession-als who speak to them in a ‘friendly’manner and address other issuesaside from diabetes.29

The inadequate transition servicedescribed by the team is a widespreadissue globally,12,13,30 with organisa-tional resources influencing the success of transition strategies.31 Inthis clinic, transfers to multiple adultclinics made transition a difficult task.It is particularly important to addressthis as clinic attendance decreases inlate adolescence, leading to anincrease in blood glucose levels.3,31

The team believed that diabeteseducation was most effective when itwas meaningful to adolescents; forexample, when it followed a signifi-cant event such as severe hypogly-caemia. In line with this, a number ofresearchers have highlighted experi-ential learning as instrumental to

living with T1D.32–34 Recent advancesin patient education for childrenand young people35,36 prioritise traditional didactic approaches, failing to address the need for multi-episodic learning, inadequatestaffing, and changing patterns oflearning for young people born intoa digital age. The need for a stan-dardised curriculum is obvious, butso is the need for more innovativeand cost-effective approaches to diabetes education utilising recenttrends in technology.

It was clear that the diabetesteam felt constrained by the frame-work they were required to workwithin, underpinned by national UKgovernment targets. Each specialistnurse had a case-load of at least 100patients, which is considerably morethan the 70 recommended by theRoyal College of Nursing16 and thisimpacted upon meeting recommen-dations for care. Variations in careprovision and blood glucose controlacross UK centres contribute touncertainty among health profes-sionals, validating the need to estab-lish global standardised models ofcare for all children and young people living with diabetes. Thisneed is currently being investigatedby SWEET which is working on pro-gressing this goal within the EU.1

In conclusion, given the smallsample size our findings are contextspecific, although similarities toother comparable teams are likelywithin the UK NHS structure.Despite this limitation, however, find-ings highlight issues meriting furtherinvestigation. Triangulation with

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l As a developed country, the UK has oneof the poorest records of blood glucosecontrol in young people with type 1diabetes

l Qualitative research with young people,their parents and the diabetes teams isrequired to understand reasons behindsuch poor control; this study focuses onthe latter

l Key findings included constrainedresources and a need for meaningful,needs-based education. Findings havenow been used to develop theAdolescent Diabetes Needs AssessmentTool (ADNAT)

Key points

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data from our previous research18

emphasises the need for individu-alised, needs-assessed education forchildren and young people, whichacknowledges their unique and com-plex social worlds. Given these find-ings we are now working on develop-ing a computer-based ‘AdolescentDiabetes Needs Assessment Tool’(ADNAT study),37–39 with a view toindividualising self-directed educa-tion and support.

AcknowledgementsPhD studentship, funded by Schoolof Health Sciences, Faculty ofMedicine, University of Liverpool,UK; ADNAT study funded byDiabetes UK.

Declaration of interestsThere are no conflicts of interestdeclared.

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