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A contribution to the Annual Conference, British Diabetic Association Education Section, 1988

People with diabetes as educators in diabetes

Henk E Pelser MD Valazquezstraat 13, I077 NG Amsterdam, Holland

Introduction People with diabetes mellitus need

instruction, so that they can understand and cooperate in the treatment neces- sary to prevent both acute metabolic dis- turbances and late complications which may cause disability and shorten their life span. Therefore doctors. nurses and dietitians usually prescribe to them what they should. or should not, do as well as explaining the reasons why - some- times even in terms they can understand. This procedure was. and unfortunately sometimes still is, called patient education.

More than a decade ago, many dia- betologists became increasingly alarmed by the evidence that a great number of people with diabetes, in spite of sufficient knowledge about their condi- tion, were unable to follow the rules they had been prescribed and taught in the traditional way. These people were often branded as 'non-compliant patients' and sometimes. 'brittle diabetics' which of course did not solve the problem.

Gradually it began to dawn upon the medical profession that perhaps doctors did not understand sufficiently what it meant to have to live with diabetes, or that their 'educational' method might not bc quite adequate, or both. Studies into this problem were performed. which seemed. increasingly, to confirm these suspicions.

Dutch pilot study In Holland. two physicians, J J Groeii

and H E Pelser. were both interested in the problems of diabetes treatment and patient education. and had earlier studied the effects of long-term group discussions with patients suffering from bronchial asthma or other chronic diseases. Both were impressed by the improvement many of these patients could achieve through discussing their emotional. social and familial problems openly and sincerely with fellow-patients within the safe setting of a closed group. With these experiences in mind, they suggested to the board of the Dutch Diabetic Association that a pilot study should be made into the possibilities of long-term group discussion to improve the unsatisfactory situation of traditional

diabetes 'education' in the Netherlands. In 1974, three groups were formed

with a total of 40 participants, 25 women and 15 men. who had responded to a notice in the Journal of the Dutch Diabe- tic Association. in which people with dia- betes were invited to 'an opportunity to discuss amongst each other, and under expert guidance, problems associated with having diabetes, and life problems in general'. Two groups were conducted by a physician (Groen and Pelser) and an observer, and met in weekly sessions. The third group was conducted by two psychologists functioning as co- therapists, and met every other week. It was agreed that each session would last 90 minutes, but this limit was usually exceeded. The group discussions con- tinued over a period of 15-18 months. The rate of attendance was the same in the three groups: 8043% during the first six months. and slightly lower during the following period.

Space does not permit me to dwell on the methodology of the group discus- sions, nor go into details of the subjects discussed. save to emphasize that the participants in each group apparently needed as much information about the technical aspects of diabetes. its treat- ment and complications. as discussions about their personal or common emo- tional problems. The latter concerned both the consequences and prospects of their condition and problems of their life in general.

One of the subjects which were re- peatedly discussed - and often in emo- tional terms - was the disappointment most participants had suffered from the attitude of their doctors. Many com- plained that their doctors did not under- stand their emotional problems. did not even ask about them, or gave insufficient time and attention to these aspects of their condition. Nearly all had experi- enced when their diabetes was diag- nosed, that the doctor had simply stated the fact and had immediately started to give technical instructions about diet and insulin - apparently not at all realizing what this 'message' meant to the patient. Nearly all patients reported that these first instructions just had not got across to them, because they had been too per- plexed and too confused by all that went

through their mind, like 'How did I get this?', 'Why me?', 'Is this a punishment for what I have done wrong?'. Questions they had virtually no opportunity to con- front their doctor with.

As this pilot study was not designed as a scientific experiment, there are no data with which we could assess whether the participants' knowledge of diabetes and its management was better at the end of the series of group discussions than at the start, or whether their condition was better than that of a comparable control group. The only documentation ob- tained in this respect was through a ques- tionnaire which revealed that all par- ticipants were unanimously of the opinion that,

(a) an educational approach by group discussions as part of treatment yields better results than the for- mal method of instruction the members had previously received

(b) the group discussions had been of such great value. both in acquiring cognitive information about dia- betes management and in receiv- ing moral support in the problems associated with having to live with the disease. that they should be made available to all diabetic patients who would wish so.

Second phase After the group sessions were ended.

the participants of each group organized informal reunions to which they also invited their former discussion leaders and observers. At these meetings they kept each other informed of their per- sonal progress. but they also inquired regularly about the progress of the report on the group discussions. which the group leaders were preparing. Finally this report was thoroughly dis- cussed. amended in places and approved by all participants. before it was suh- mitted to the Board and Medical Ad- visory Committee of the Dutch Diabetic Association.

Meanwhile, the group members them- selves organized a meeting of all parti- cipants from the three groups for a dis- cussion of the ways and means to expand the number of groups for the henefit of other people with diabetes. At this meet- ing it was recognized that it would be

Practical Diabetes januaryhbruary 1989 vd 6 No 1 33

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difficult to find a sufficient number of group leaders who combined adequate knowledge of the management of dia- betes with skill in leading discussion groups. Thereupon it was suggested to the former group members that they might consider the possibility of being themselves trained to function as group leader or observer to new groups with fellow-patients. After ample discussion, a number of former group members accepted this suggestion.

At about the same time, some general practitioners and a few medical and psychology students who had heard of our discussion groups, had shown an interest in training for discussion leader of groups with diabetics. This gave us the idea of jointly training former group members. doctors and students for the function of discussion leader - a plan which was applauded by all involved. amply discussed, amended and finally approved.

Thus. a sccond. training phase of the project started, in which 18 diabetics with previous group experience, seven doctors, two medical students and two psychology students were trained by three instructors: J J Groen. H E Pelser and H van Dis, a clinical psychologist and bachelor in medicine.

Three groups were formed, each with six diabetics. two or three doctors and one or two students. The training was given in weekly sessions of about two hours. In the first hour a regular group discussion was held. the dynamics of which were explained and discussed in the following hour. The participants took turns as discussion leaders and obser- vers. and their performances were criti- cally evaluated each time by both the other group members and the instructor. After each group discussion the instruc- tor rctired from the group with one of the members and discussed the dynamics of the previous session for about ten minutes. Meanwhile the group was instructed to do the same on their own. after which the two parties compared notes. In the course of the training they reached more and more congruous con- clusions, which was appreciated as evi- dence of the trainees' progress in under- standing group dynamics.

Each of the three instructors guided one group through a period of seven weeks, whereupon a joint meeting of all participants was held in the eighth week. Thc instructors thcn changed groups. again for seven weeks' period. which was followed by a joint meeting. and this was rcpeated once more. In this way the instructors became familiar with each of the three groups, and the groups in turn became acquainted with each of the instructors and their personal style of instruction. Apart from the scheduled training and joint evaluation sessions,

34

the participants attended three joint formal lectures on diabetes, its manage- ment, and group technique, with sub- sequent discussion.

Observations In the early phases of the training,

some doctors sometimes found it difficult to adapt themselves to the unusual situation of having to accept the patients in their group as equal partners in the discussions, particularly when the latter openly criticized the behaviour of their own doctors as they had experi- enced it. Very soon however, the GPs identified with the patients without prob- lems. After a while they noticed that their powers of empathy gradually improved, also with regard to the patients in their own practice. On the other hand the patients learned to under- stand that doctors found it emotionally difficult to treat patients whom they can- not cure, and particularly did not know how to give understanding and support if patients, as is often the case with diabe- tics, do not themselves bring up their emotional problems when they visit their doctor.

Another important observation was that all GPs agreed to have learned more, both about what it means to be a diabetic, and about the disease and its treatment, than they had ever learned from books or at the university. They began to read more about diabetes. and after the training sessions they felt better equipped to treat their diabetic patients themselves. instead of referring them more or less as a rule to diabetologists. This the more remarkable because in the early phase of the training the doctors had avoided discussing the technical aspects of diabetes management, since they found that some patients in the group had far more knowledge of the subject than they themselves. Most of the doctors however, soon made up for the arrears - possibly because as par- ticipants in a long-term discussion group they were involved in a peculiar learning process ('confluent learning'). in which assimilation of cognitive information is facilitated by the simultaneous emo- tional (group) experience.

The subjects discussed at the training sessions concerned similarly as in the original discussion groups. both the technical and the emotional problems of having diabetes, the fear of complica- tions and general problems of life, eg ambivalence conflicts with key-figures. Actually. most patients continued to air their personal emotional problems dur- ing the training. This did not interfere with the training procedure; on the con- trary. it provided the instructors with a valuable guide line: the problems raised by the participants in the training group

as important to them, could be assumed to be raised also in future discussion groups by their fellow-patients and there- fore formed a good basis for the training discussions.

Results of the training At the end of the training the three

groups together discussed with their instructors which of the participants con- sidered themselves able to function as discussion leader or observer to newly formed discussion groups with diabetic patients. It appeared that 11 of the 17 patients (one had withdrawn), felt them- selves sufficiently certain to perform in either of the two functions. This self- estimate concurred virtually completely with the opinion about them, both by the three instructors and by their fellow- , participants. In addition, five of the seven general practitioners and the four medical or psychology students met these requirements, both in the eyes of themselves and the others. In other words a total of 20 of the 29 individuals who had attended the training groups. were judged capable for a future task as discussion leaders or observers.

Third phase The thus 'qualified' discussion leaders

and observers started work with newly recruited (tertiary) discussion groups of diabetic patients. They decided to form 'pairs' or 'couples' of one group and one observer to fulfil their task jointly under supervision of two of the three trainers (Groen and Pelser).

Between the end of September 1978 and the beginning of June 1979. nine new 'pair guided'. supervised discussion groups, with a total of 71 diabetic patients as participants were formed. Four of these pairs consisted of two trained diabetic patients: three pairs combined a doctor with a patient: one pair combined the psychologist-medical instructor (H van Dis) with a psychology student. and one pair consisted of two medical students. These tertiary groups likewise met once a week for sessions lasting about 90 minutes. and were scheduled for a primary duration of 26 weeks. The subjects discussed 'spontane- ously' in these groups were practically the same as those discussed in the origi- nal discussion groups. The attendance rates were as high as in the primary groups, and there were very few drop- outs.

At the end of the first six-month period. the participants in all groups said they had learned more about the medical-technical aspects of diabetes and felt better able to cope with their ill- ness: some were reassured by the aware- ness that they were not alone with their problems and difficulties. and most of

People with diabetes as educatbrs jn diabetes

Practical Diabetes january/February 1989 MI 6 No 1

them emphasized that the group discus- sions had been very valuable to them for the support they had found with regard to their emotional problems. Many patients reported that their relationship with their attending physician had im- proved because they were better able to discuss with the doctor the subjects they considered important. Another remark- able finding was that in terms of atten- dance, subjects discussed and effects on the participants there was no difference between the groups guided by trained patients and those guided by trained doctors.

One problem never occurred in the tertiary groups: sceptical colleagues had feared and even predicted that the trained patients as group leaders would be tempted to function as 'substitute doctors'. Although the supervisors paid special attention to this possibility. it never happened. When complaints about lack of understanding by their attending diabetologists were voiced in the groups, the attitude of the discussion leaders was invariably: 'Why do you not discuss this with your doctor?'. Other patients would join in and usually the discussion turned just as much about the doctor's 'fault' as about the patient's 'failing' to talk it out with him.

People with diabetes as educators in diabetes Symposium

Dates for your Diary

Supervision procedure

For the purpose of supervision, the two physician instructors met with the 'guiding pairs' about once a month to dis- cuss what was happening in their groups. Prior to this meeting the observers usually had sent a report of the group yssions to the supervisor, which he returned to them with his comments. In this way the supervision discussions could be focussed on the main dynamic problems which had occurred in the groups, and at the same time used to give the guiding pairs encouragement and support when they felt insecure about not having seen through the dynamics of their group in some of its discussions. Besides, by arranging with three guiding pairs to meet together for these discus- sions with the supervisor, a kind of super- vision group was formed, in which the members could exchange both their ex- periences and their emotional problems. thus facilitating the assimilation of the supervision lessons by confluent learn- ing. As a result most discussion leaders and observers soon were capable to detect and control more complicated group situations adequately, so that in about a year the supervision turned more or less into intervision discussions

between competent co-workers and their former instructor.

Conclusion

The experiences during the third phase of this project confirmed that it was possible to train diabetic patients with a year's group experience, together with general practitioners and a few medical and psychology students, for the function of discussion leader or observer in newly formed long-term discussion groups for diabetic patients. Like in the primary groups. the beneficial effects on the participants varied. Although all improved in their handling of the disease and in their emotional stability, this was more marked in some than in others. It seemed as if participation in long-term discussion groups contributed to im- proved collaboration between patient and doctor, not just in the form of so- called 'self-help', but especially in a form which is probably best described as 're- ciprocal help'. In this respect it seems that our diabetic group leaders and ob- servers are forerunners in a trend of modern health care. in which patients are trained to work together with their doctors, and doctors are trained to col- laborate with their patients.

FRIDAY-SUNDAY, 24-26 FEBRUARY 1989 British Diabetic Association Education Section, Annual Conference, University of Manchester Institute of Science and Technology (UMIST). Further details from the British Diabetic Association, 10 Queen Anne Street, London WIMOBD.

British Dhbetk Association Annual Conference, University of Man- Chester, Institute of Science and Technology (UMIST). Further details from the British Diabetichsociation, 10 Queen Anne Street, London WIM OBD.

FRIDAY-SATURDAY, 24-25 FEBRUARY 1989

El: 01-323 1531. THURSDAY-FRIDAY, 16-17 MARCH 1989 Ward Sisters' Conference: Primary Nursing, Kensington Town Hall, London. Contact: Susan Wharton, Conference Admini.strator. Macmillari Journals Ltd, 4 Little Essex Street. London WC2 3LE El: 01-836 6633.

Royal College of Naming C o n g m and Exhibition, The Winter Gardens, Blackpool. Cuntact: Brian French, Con erence Manager; Scrctari Projects,

423 1066.

Spring Meeting, University of ManChester. Meeting of the British Dia- betic Association Medical and Scientific Section. Further details from the British Diabetic Association, 10 Queen Anne Street, London WIM OBD.

MONDAY-FRIDAY, 3-7 APRIL 1989

17-19 Peterborough Road. Harrow on t x e Hill, Middx HA1 2AX. El: 01-

THURSDAY-SATURDAY, 14-15 APRIL 1989

El: 01.323 1531. WEDNESDAY-FRIDAY, 19-21 APRIL 1989 Sixth National Practice Nurse Conference, University of Keele, Newcastle under Lyme. Contact: Jane Evans, WMPNA, Arthur Thompson House. 146 Hagley Road, Birmingham 816 9PA. Tel: 0785 840228. FRIDAY, 12 MAY 1989 Practical Diabetes C&rence, Park Hotel, Cardiff, Wales. For further details contact: Sascha Lobkowicz. The Newbourne Grouo. Home and Law Publishin Ltd, Greater London House, Hampstead Road, London NWI 7Qb . Tel: 01-3883171. WEDNESDAY, 31 MAY 1989 practical Diabetes Conference, Queens Hotel, Leeds. Forfurther details contact: Sascha Lobkowicz. The Newbourne Group, Home and Law Pub- lishing Ltd, Greater London House, Hampstead Road, London NWI 7QQ. El: 01-3883171.

WEDNESDAY, 21 JUNE 1989 Practical Diabetes Conference, Centennial Centre, Birmingham. For further details contact: Sascha Lohkowicz, The Newboicnie Group, Home and Law Publishin Ltd, Greater London House. Hampstead Road. Lon- don NWI 7QQ. E f 01-3883171.

National Association of Health Authorities, Annual General Meeting, Riviera Centre, Torquay. Contact: Ann Ma.sori. Cotfercvice Marruger. tiarth House, 47 Edghastotr Park Rriiid. Birmitighatn BIS 2RS. Tel: 021-471 4444. THURSDAVFRIDAY, 7-9 SEPTEMBER 1989 Autumn Meeting, University of Nottinghm. Meeting of the British Dia- betic Association Medical and Scientific Section. Further details from the British Diabetic Association. 10 Queen Anne Street, London WI M OBD.

WEDNESDAY-FRIDAY, 21-23 JUNE I989

Tel: 01-323 1531. WEDNESDAVSATURDAY. 20-23 SEPTEMBER 1989 25th Annual Meeting of the European Association lor the Study of Dia- betes, Lisbon, Portugal. Further details from: EASD Secretariat. A r f m Hennekamp 32, D-KNXW Dweldorf 1. Germativ. El: 010-49 211 316738.

Meeting of the British Diabetic Association ProFeSsional Services Section. Skean Dhu Hotel, Aberdeen. Further details from the British Diabetic Association, 10 Queen Anne Street, London WIM OBD. El: 01-323 15.31.

THURSDAY-FRIDAY. 28-29 SEPTEMBER 1989

WEDNESDAY, 11 OCTOBER 1989 Practical Diabetes Conference, Royal College of General Physicians, Edin- bureh, Scotland. For further demih contact: Sascha Lobkouicz. The New- bourne Group, Hom; and Law Publishing Ltd. Greater London Horcse, Hampstead Road, London NWI 7QQ. 21: 01-3M3171.

Health Visitors Association Annual Study Conference and Exhibition, Spa Centre, Scarborough. Contact: Sheila Everett. Meeriti~~1~hibitiotr.s OrganiseK Health visitors' Associati~iti, 50 Soicthwark Street. London SEI

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TU ESDAYTHU RSDAY, 2 1-23 NOVEMBER 19 89 Nursing Times and Primary Health Care Conference and Exhibition, Olympia, London W 14. Contact: Susan Wharton. Conference Adminis- tmto~ Macmiilan Journals Ltd, 4 Little &ex Street. London WC2 3LE El: 01-836 6633.

Practical Diabetes January/February 1989 W 6 No 1 35