The development of an innovative education curriculum for yr old children with type 1 diabetes mellitus (T1DM)

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1 Peiatric Diabetes 2006: 7: All rights reserve # 2006 The Authors Journal compilation # 2006 Blackwell Munksgaar Peiatric Diabetes Original Article The evelopment of an innovative eucation curriculum for yr ol chilren with type 1 iabetes mellitus (T1DM) Knowles J, Waller H, Eiser C, Heller S, Roberts J, Lewis M, Wilson K, Hutchinson T, Willan M, Bavelja P, Bennet G, Price K. The evelopment of an innovative eucation curriculum for yr ol chilren with type 1 iabetes mellitus (T1DM). Peiatric Diabetes 2006: 7: Backgroun: Evience-base, structure eucation is recommene for all people with iabetes; tailore to meet their personal nees an learning styles. Ault courses exist in the UK but are of limite value for chilren. The aim of this stuy was to aapt the ault Dose Ajustment For Normal Eating (DAFNE) course to esign a skills training course, for chilren age yr, focusing on self-management skills within an intensive insulin regime. To ensure that the course format meets the evelopmental, intellectual an social nees of chilren an aolescents an is elivere using eucationally soun techniques. Methos: Relevant professionals an potential users of the course were involve in curriculum esign an content in the following ways: (i) The views of 95 peiatric iabetes specialist nurses were sought through a postal survey; (ii) Focus group iscussions were conucte with chilren with type 1 iabetes mellitus (T1DM) an their families to contribute to content an esign; an (iii) Seconary school teachers worke with experience peiatric iabetes staff avising on eucational content an teaching format. Results: The evelope curriculum uses a progressive moular-base structure to improve self-management in a variety of meical an social situations. It has clear learning objectives an is base on the format of UK schools curricula. Aitional support is provie through eicate parent sessions, involvement of friens an the provision of a school resource pack. Conclusion: Collaborative working between health professionals, school teachers an families has resulte in an age-appropriate curriculum, which employs valiate eucational techniques. This will be refine following pilot courses before formal evaluation in a multicentre ranomize controlle trial. Julie Knowles a, Helen Waller b, Christine Eiser b, Simon Heller c, Julie Roberts, Michael Lewis, Kim Wilson, Tim Hutchinson, Mal Willan, Petar Bavelja, G Bennet a an Kath Price a a Sheffiel Chilren s NHS Trust, Western Bank, Sheffiel, UK; b Department of Psychology, University of Sheffiel, Western Bank, Sheffiel, UK; c Northern General Hospital, Clinical Sciences Centre, Sheffiel, UK; an King Ewar VII Seconary School, Sheffiel, UK Key wors: aolescents chilren DAFNE structure eucation type 1 iabetes Corresponing author: Julie Knowles, RGNRSCN, Dip. Professional Practice in Nursing, Sheffiel Chilren s NHS Trust, E59 Stephenson Unit, Western Bank, Sheffiel S10 2TH Tel: , j.a.knowles@btinternet.com Submitte 1 March Accepte for publication 15 July 2006 Chilren an young people with type 1 iabetes mellitus (T1DM) face a lifetime with their conition. There is goo evience that improve glycemic control [hemoglobin A1c (HbA1c)] not only reuces the risk of long-term complications (1) but is also associate with improve quality of life (QoL) (2). Chilren require the knowlege an ability to achieve optimal glycemic control when in school, work an 322 social situations as they make the transition from chilhoo to aulthoo. Structure iabetes eucation Intensive insulin regimens are increasingly being use but with evience that this alone oes not influence glycemic outcome. Following the initial results of the

2 Hviøre stuy group, many centres ecie to change to an intensification of insulin therapy, but only a few foun an improvement in the clinic HbA1c (3). Factors such as the attitues of treatment teams, self-care behaviors, use of eucational moels or patient satisfaction may be more irectly relate to outcomes than insulin regimens (3). Many eucational programs have been escribe which may avocate alternative venues such as summer camps (4), the use of new technologies (computer or telephone-base learning) or focus on specific aspects of self-care such as coping skills training (5). The majority report improve QoL or iabetes-relate knowlege but they fail to aress all the concepts of holistic iabetes eucation. In Germany, structure iabetes eucation programs for 6 12 yr ol chilren an young aults are wiely use, some have been evaluate an publishe (6 8). These programs have apparent success but remain unteste by ranomize controlle trials (RCTs). Within the UK, peiatric iabetes teams offer a substantial amount of eucation but most are unstructure an poorly evaluate. Inee, Hampson et al. (9) have highlighte the lack of well-conucte trials of eucational an psychosocial interventions in chilren an aolescents. Guiance from the English Diabetes National Service Framework (10), the National Institute for Clinical Excellence (NICE) (11), Diabetes UK an the Department of Health (12) support the elivery of structure eucation which is esigne to meet the nees an learning styles of the population an elivere by appropriately traine staff. Diabetes eucation shoul also be quality controlle (13, 14) in orer for it to be effective an efficient (9, 15). The recent ocument from Diabetes UK an the Department of Health (12) highlights a gap in the elivery of such eucation to chilren an aolescents an provies specific quality stanars for eucation programs namely that they shoul be evience-base an have very clear aims an objectives which will enable the patient to learn within an environment that is conucive to his/her personal learning nees; be elivere by suitably traine eucators, be structure, quality-assure an auite. Within the UK, one such program for aults is the Dose Ajustment For Normal Eating (DAFNE) program that is base on a German eucation moel (16). The course provies skills training in ose ajustment within a basal-bolus insulin regime, allowing more flexibility an ietary freeom than traitional iabetes regimes. Within a three-centre stuy, significant improvements in HbA1c an QoL, without increase hypoglycemia, were emonstrate (17). This stuy ha a ranomize cross-over esign with the control group unertaking the intervention after 6 months. No aitional supervision or support was Developing a paeiatric iabetes eucation course offere. The conclusion of the stuy claime that the DAFNE approach ha potential in the short term to reuce iabetes-relate complications, hypoglycemic episoes an improve QoL but neee further investigation. Subsequent experience has shown that in many patients there is, with increasing time, a ecline in HbA1c after a DAFNE course an that regular reinforcement of eucation is require. The ault DAFNE program has many aspects that may appeal to younger patients, especially in enabling greater inepenence an ietary freeom, but the course curriculum has limite use in its current format for chilren an aolescents. It woul not allow the chilren to organize their own work, is not matche to their abilities to learn an oes not employ the variety of learning activities recommene by the Office for Stanars in Eucation (OFSTED) for teaching chilren (18). This UK Government epartment, establishe in 1992, has the aim of improving the provision of eucation an care for chilren an learners in Englan. This is achieve through inspection an regulation, an it reports publicly on the quality an stanars of each school an nursery an their teacher provision. All schools in Englan are therefore require to meet these stanars of eucation (19). Our objectives were to esign a course which woul be suitable for yr ol chilren with T1DM an which woul teach them the DAFNE principles of ose ajustment within an intensive insulin regimen. As teaching an learning styles vary between chilren of all ages, it is essential that eucational curricula offer a variety of learning opportunities. This allows the stuent to use his/her preferre metho of learning, yet support them when in a non-preferre environment. Breaking a curriculum into sessions with clear eucational targets allows existing knowlege an skills to be built upon with the aim of elivering an effective eucational experience for all. For the eucators to apply a curriculum effectively, they nee to unerstan the evelopmental age, cognitive, psychosocial an emotional aspects of each stuent (20). Unlike school eucation, the stuents will be participating voluntarily. Therefore, they have to be encourage freely to take part in the activities to minimize the risk of isruptive behavior. The challenge was therefore to prouce a curriculum that woul aress these issues. Methos Ethical approval was gaine from the Local Research Ethics Committee Consultation phase. We consulte iabetes nurses an chilren with T1DM an their families to gain an Peiatric Diabetes 2006: 7:

3 Knowles et al. insight into current eucational practice, their views on the ault DAFNE course an the acceptability of such methos of eucation. These phases of the stuy have been publishe in etail but are summarize below: (i) Peiatric iabetes specialist nurses: review of current practice an views on the propose course (21). A postal survey was sent out in Autumn 2002 to 130 peiatric iabetes nurses/clinics whose contact etails were obtaine from the Diabetes UK register for specialist nurses. A structure questionnaire was esigne to gather information on current eucational practices (use of intensive insulin regimens, carbohyrate (CHO) quantification, local programs of eucation an teaching material) an seek views on the feasibility an potential ifficulty of implementing a DAFNE-type program in young people. A 71% response rate was achieve. The survey showe, at that time, there were no evaluate structure eucation programs in use in peiatric centres that woul fulfil the NICE requirements (21). Responents perceive the propose course to be ifficult, but achievable. Particular worries were staffing an resource issues, parental anxiety an the suitability of the course for less motivate patients. (ii) Chilren with T1DM an their parents: focus group evaluation (22). Focus groups with chilren an parents were hel to explore their views on current iabetes eucation, the ault DAFNE programme an the perceive benefits an barriers to such a regime for chilren. All chilren attening iabetes clinics in Sheffiel UK were invite to atten if they were yr of age, ha been iagnose for at least 1 yr, coul speak English an were not on pump therapy. Ninety families fulfille the criteria, of whom 24 chilren an 29 parents volunteere to take part. Chilren an parents were separate an the groups ran concurrently. A semi-structure approach was use with two facilitators in each group. Discussions were tape recore an later transcribe before unergoing systematic qualitative analysis (23). Families inicate that a peiatric DAFNEtype programme woul be supporte as it has the potential to improve QoL, espite the increase number of injections an bloo tests. Potential barriers to success inclue managing iabetes in school, parental anxiety about their chil s ability to cope an concerns that increase ietary freeom woul lea to less healthy foo choices (22). The focus groups also irecte the chosen format, namely, five consecutive school length ays with age baning of groups to yr an yr. Curriculum evelopment phase We worke closely with seconary school teaching staff, using their expertise in curriculum evelopment. The chosen format is closely relate to the UK schools National Curriculum to ensure compatibility with current methos of teaching in UK schools. We employe OFSTED recommenations of the skills require for goo teaching practice (18) (Table 1). Specific role of teachers in curriculum evelopment Lesson planning. The teachers were aware of the potential users, course content an timings for the week. OFSTED guielines were use to plan each session. Each must inclue very clear learning aims an objectives, etails of timing, equipment require an group organization. They highlighte the nee for structure an smooth lesson elivery while allowing flexibility with the lesson plan to suit the nees of the participants. Teaching style. The teachers stresse how important it was to vary the style of teaching an encourage active involvement of stuents. Role-play, workshops an creative tasks were evelope in orer to reinforce the learning objective. Teaching specific subjects. Teaching math to a mixe ability group requires the session to be written in its simplest form in orer to achieve the same learning goal for all. Varie tools an tasks, e.g., slie rule or worksheets were prepare to allow choice for the eucator when supporting iniviuals. Practical cookery sessions were planne for reinforcing CHO counting; therefore, the foo technology teacher gave practical help on preparing menus an equipment for the session. Table 1. Qualities looke for by Office for Stanars in Eucation (OFSTED) Lessons shoul be purposeful with high expectations conveye Pupils shoul be given some opportunities to organize their own work (over irection by teachers nees to be guare against) Lessons shoul elicit an sustain pupil s interest an be perceive by pupils to be relevant an challenging The work shoul be well matche to pupils abilities an learning nees Pupil s language shoul be evelope an extene (teachers questioning skills play a part here) A variety of learning activities shoul be employe Goo orer an control shoul be largely base on skillful management of pupil s involvement in the lesson an mutual respect 324 Peiatric Diabetes 2006: 7:

4 Developing a paeiatric iabetes eucation course Presentation of curriculum. The curriculum use by eucators was structure to guie the eucator through each lesson, incluing the use of teaching ais an worksheets. Setting bounaries an promoting a conucive learning environment. Avice was given on how to give ownership of the course to the group of participants while the eucator still ha control. Appropriate reaing age for the literature to be use. The teachers avise on the reaing age of 12 yr or less for the written information provie uring the course. Results At the start of the course, participants set their own personal targets, expectations an groun rules to work along sie those propose by the curriculum an eucators (Table 2). Setting agree bounaries encourages a sense of ownership, promotes effective learning an a relaxe working environment. Learning objectives for each ay an each session are clearly ientifie with the aim of builing knowlege an skills throughout the week. Eucators have instructions on session preparation an teaching materials. Lesson plans give guiance on timing, an a stuent activity section serves to give an iea of expecte responses. Curriculum content The curriculum is base on a moular structure, each esigne to eliver key learning topics at the appropriate time within the program. In this way, knowlege an skills are built up throughout the week with active participant involvement an problem solving as key methos of learning (Table 3). The following section provies examples of teaching styles that cover four of the main moules: Foo an iabetes The aim of this moule is to teach the stuent how to estimate ietary CHO content while still trying to influence a healthy iet. On ay 1, the stuent uses foo moels, scales an worksheets to learn how foos affect the bloo sugar level an how much insulin is neee per 10 g of CHO or one carbohyrate portion Table 2. Peiatric Dose Ajustment For Normal Eating (DAFNE) program. Monay Tuesay Wenesay Thursay Friay 9.00 AM: Introuction to the course What is iabetes? As a group iscuss iniviual bloo sugar levels. Insulin: action, timings an types Discuss bloo sugar levels. Practice ajusting insulin Friens invite Discuss bloo sugar levels, friens iscuss the course Using DAFNE in school Break Break Break Break Break Secon session AM: Signs an symptoms Types of foo Introuce insulin/ carbohyrate relationship Secon session carbohyrate portion/insulin ratio Counting grams of carbohyrate Secon session Diabetes an long-term health Secon session Hypoglycemia Social issues Poster isplay Lunch Packe lunch Lunch Lunch Lunch Thir session 1.00 PM: Monitoring Recapping the ays objectives Thir session Practical session in a kitchen. Recap objectives of Thir session with parents Illness using DAFNE guielines. Role-play Thir session Exercise theory an practical the ay Break Break Break Break Fourth Session Fourth Session Fourth Session 2.30 PM: Parents Hypoglycaemia Correction invite Plan evening oses everyay insulin ose Stuents to Millionaire plan evening game insulin ose Personal interviews Fourth Session Guest speaker Plan insulin ose Discuss bloo sugar levels Healthy eating Sweets an treats Secon session The future Discuss school packs Recap weeks learning objectives Thir session Parents iscussion Chilren o fun activity Continue. Finish Peiatric Diabetes 2006: 7:

5 Knowles et al. Table 3. Moules from the peiatric Dose Ajustment For Normal Eating (DAFNE) curriculum What is iabetes? Foo an iabetes Insulin management Management of hypoglycemia Monitoring Sick ay rules Living with iabetes School an iabetes Transition of care (CP). This is further explore on ay 2 uring a practical cookery session. Every snack an meal is use as an opportunity to estimate CHO, rea foo labels, an each meal at home is planne in avance so the family can practise their skills (Table 4). Insulin management Stuents will be encourage to ientify their personal ratio of insulin to CP requirement. Day 1 uses group work to explore the ifferent types of insulin an action times. Each morning, group analysis of bloo sugar profiles an require insulin ose changes helps to consoliate iniviual learning. As the course progresses, stuents will be encourage to lea the iscussion, with guiance from the eucator. Hyperglycemia In the first 2, the stuents explore through iscussion, personal experience an group work the causes of hyperglycemia. This prepares them on ay 3 for the worksheets to explore solutions to raise bloo sugar levels an management of iabetes uring illness. Stuent role-play is use to reinforce the issue of hyperglycemia an preventing long-term complications. Living with iabetes One of the main concerns raise in the focus group sessions was how a chil with iabetes may be supporte in school an informing friens. During the course, the stuents will help to esign a newsletter for school, so that they may share their new knowlege with friens an teachers. Each chil invites a frien on ay 4 for half a ay to iscuss, in groups, how to cope with having iabetes in school, social situations an how their frien may help to support them. Coping with exercise an iabetes is also aresse uring a practical exercise session, i.e., baminton an football. This is also the focus of the final session of the course when the stuents have time to socialize at a bowling alley. This activity also incorporates eating out. Parent eucation Each family receives a resource pack, incluing a theory booklet, CP booklet an recor iary. Parents receive abbreviate eucation at the en of each ay, which highlights the main features of the course. On many occasions, the chilren provie this information to the group of parents, with the aim of shifting the focus of control from parent to chil. Meals at home are jointly iscusse with parents an stuent. Discussion Ault eucational iabetes courses available within the UK are of limite use for chilren an young people. Young people with T1DM have many influences on their evelopment from chilhoo to aulthoo, from parental support, school, health-care professionals an friens. It was our aim to ientify these influences in orer to evelop an effective teaching tool. Curriculum evelopment has therefore involve many agencies from families an young people with iabetes, to teachers of eucation an other healthcare professionals. By involving this team of people, with iffering expertise an professional perspectives, we hope to have aresse more closely the evelopmental nees of this age group. The evelopment of the curriculum has also highlighte the nee for health professionals to become teachers. Eucators will nee to unerstan their own limitations in teaching this age group an explore ways in which they may enhance their skills in teaching. Therefore, it is essential that eucator-training nees are aresse uring subsequent phases of the project. In a next phase, we plan to eliver six pilot courses in three centres. The aims of this phase will be to refine the course format an curriculum content, to evelop outcome evaluation tools, to explore how the eucational techniques may be reinforce an to gain an inication of possible effect size prior to phase 3, a ranomize controlle trial. As numbers of chilren with T1DM increase an more is unerstoo about the relationship between control in chilhoo an later complications, the nee for eucation that is acceptable to young people an allows them to lea as normal a life as possible is vital. Development of eucational programmes is complex an iabetes eucators can learn much from collaboration with teaching staff. It is vital that our approach parallels those with which the chilren are familiar an that we benefit from innovations in teaching practice as they become available. 326 Peiatric Diabetes 2006: 7:

6 Developing a paeiatric iabetes eucation course Table 4. Day 2, session 3. Counting grams of CHO Tuesay Learning objective Materials Session 3: Continue with CHO an insulin ratios Scales, foo ingreients, Counting grams of CHO Practical session Continuing with learning the skills for counting grams of CHO recipes, flip chart, pens, iaries, worksheets, calculators, plates, kitchen equipment, igital scales, pots an pans, baking tins, washing up materials, tea towels, cloths an washing up liqui Eucator: Dietitian an nurse Preparation: Transport chilren to school cookery room. Set up the work stations with foos neee for recipes Time Eucator activity Stuent activity Materials 1.00 PM Explain: This session is a practical session to learn how to work out, how much CHO is in the foo you prepare. Group to split into pairs an they are each given a recipe. After the meals are cooke or cooking the chilren are to work out the total amount of CHO an how much CHO is in each serving an write it on the worksheet an on the paper plates for the parents to guess answers. Ask: Group to serve up portions of cereals, pasta, rice an potatoes weighe raw an cooke, work out CPs an isplay for parents to estimate PM Check the answers before the parents join the session an recap on the ay s learning objectives. Response: (i) Split into pairs but not the same pairs as the morning; (ii) Follow recipes; (iii) Tiy up after the foo is prepare; an (iv) Complete worksheet. Response: Each group gives their answers an the rest of the group provies comments PM Parents aske to join at break time. Ask: Parents to estimate CPs in cereal, raw an cooke rice, pasta an potato on isplay. Ask: Stuents to correct the parents Response: Chilren ask parents to guess total amount of CPs in the meal an iniviual CP content. Then how much insulin they woul nee. an provie correct answers. Explain the importance of weighing these foos especially prior to cooking them, an the nee to calculate the CPs in orer to work out how much insulin to take. This can be one uring the break as well. The foo may be eaten for snack. CHO, carbohyrate; CP, carbohyrate portion. Four recipes for fruit muffins, fruit scones with jam an butter, scales, paper plates, ingreients, utensils, calculators, pens an flip charts. Worksheet for estimating CPs in rice, pasta, potato, cereals. Han out information sheet on CHO content per 100g of rice, pasta, potatoes an ifferent cereals. Parents worksheets. Acknowlegements The authors woul like to thank all of the chilren an their families in Sheffiel who took part in the focus group sessions. The project was fune by Sheffiel Chilren s Hospital Charity. References 1. DIABETES CONTROL AND COMPLICATIONS TRIAL RESEARCH GROUP. Effect of intensive iabetes treatment on the evelopment an progression of long-term complications in aolescents with insulin-epenent iabetes mellitus. J Peiatr 1994: 125: HOEY H, AANSTOOT HJ, CHIARELLI F et al. Goo metabolic control is associate with better quality of life in 2101 aolescents with type 1 iabetes. Diabetes Care 2001: 24: DANNE T, MORTENSEN HB, HOUGAARD P et al. Persistent ifferences among centers over 3 years in glycaemic control an hypoglycaemia in a stuy of 3,805 chilren an aolescents with type 1 iabetes from the Hviøre stuy group. Diabetes Care 2001: 24: Peiatric Diabetes 2006: 7:

7 Knowles et al. 4. SEMIZ S, BILGIN UO, BUNDAK R, BIRCAN I. Summer camps for iabetic chilren: an experience in Antalya, Turkey. Acta Diabetol 2000: 37: GREY M, BOLAND EA, DAVIDSON M, YU C, SULLIVAN- BOLYAI S, TAMBORLANE WV. Short-term effects of coping skills training as ajunct to intensive therapy in aolescents. Diabetes Care 1998: 21: LANGE K, KINDERLING S, HURTER P. Eine multizentrische Stuie zur Prozess - un Ergebnisqualitaet eines strukturierten Schulungsprogramms. Diabetes un Stoffwechsel 2001: 10: LANGE K, HURTER P. Effekte einer strukturierten Diabetesschulung fuer Jugenliche auf Stoffwechsel, Wissen, Wohlbefinen un Selbstaenigkeit - Ergebnisse einer multizentrischen Stuie. Diabetes Stoffwechsel 1998: 7 (Suppl. 1): 62 (Abstract). 8. VON SENGBUSCH S, MULLER-GODEFFROY S, HAGER S, REINTJES R, HIORT O, WAGNER V. Mobile iabetes eucation an care: intervention for chilren an young people with Type 1 iabetes in rural areas of northern Germany. Diabet Me 2006: 23: HAMPSON SE, SKINNER TC, HART J et al. Effects of eucational an psychosocial interventions for aolescents with iabetes mellitus: a systemic review. Health Technol Assess 2001: 5: Department of Health. National Service Framework for Diabetes: Delivery Strategy. Lonon: Department of Health, NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE. Guiance on the use of patient eucation moels for iabetes. Technology Appraisal No. 60. Lonon: NICE, Department of Health, Diabetes UK. Structure Patient Eucation in Diabetes. Report from the Patient Eucation Working Party. Lonon: DOH an Diabetes UK, INTERNATIONAL SOCIETY FOR PEDIATRIC AND ADOLESCENT DIABETES. In: SWIFT PGF, e. International Diabetes Feeration: ISPAD Consensus Guielines for the Management of Type 1 Diabetes Mellitus in Chilren an Aolescents. Zeist, The Netherlans: Publ. Meforum, AMERICAN DIABETES ASSOCIATION. Stanars of meical care for patients with iabetes mellitus. Diabetes Care 2000: 23(Suppl. 1): LUDVIGSSON J, BOLLI GB. Intensive insulin treatment in iabetic chilren. Diabetes Nutr Metab 2001: 14: MUHLHAUSER I, BRUCKNER I, BERGER M et al. of an intensifie insulin treatment an teaching programme as routine management of type 1 (insulin epenent) iabetes: the Bucharest-Dusselorf stuy. Diabetologia 1987: 30: DAFNE STUDY GROUP. Training in flexible, intensive insulin management to enable ietary freeom in people with type 1 iabetes: ose ajustment for normal eating (DAFNE) ranomise controlle trial. BMJ 2002: 325: KYRIACOU C. Essential Teaching Skills, 2n en. Cheltenham, UK: Nelson Thornes Lt, 1998: MUIJUS D, REYNOLDS D. Effective Teaching, 2n en. Lonon: Sage Publications, 2005: KIGER A. Teaching for Health, 2n en. Einburgh: Churchill Livingstone, 1995: WALLER H, EISER C, KNOWLES J, HELLER S, PRICE K. Implementing a new paeiatric structure eucation programme. J Diabetic Nursing 2005: 9: WALLER H, EISER C, KNOWLES J, HELLER S, PRICE, K. Aolescents an their parents views on the acceptability an esign of a new iabetes eucation programme: a focus group analysis. Chil Care Health Dev 2005: 31: KREUGER RA. Analysing an reporting focus group results. In: Morgan DL, Krueger RA, es. The Focus Group Kit Part 6. Lonon: Sage Publications, Peiatric Diabetes 2006: 7: