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Learning difficulties of diabetic patients: a survey of educators
Patient Education and Counseling 35 (1998) 139–147
Learning difficulties of diabetic patients: a survey of educators ´ Gagnayre, Jean-Franc¸ois d’Ivernois* Caroline Bonnet, Remi ´ de Vinci, Health Sciences Education Department, A WHO Collaborative Centre for Health Care Personnel, UFR-SMBH Leonard 74 Rue Marcel Cachin, 93017 Bobigny Cedex, France Received 12 May 1997; received in revised form 9 February 1998; accepted 16 February 1998
Abstract This study was designed to shed light on the learning difficulties of diabetic patients. An open-ended questionnaire was sent to 85 health care professionals working in the field of diabetes and nutrition who had been trained in patient education techniques. They were asked to describe the skills that were the easiest to teach patients and those that patients mastered the best, as well as the skills they found hardest to teach patients, those that patients mastered the least and those that gave rise to errors persisting after the patients education was completed. On the whole, the results showed that the educators found it easy to teach techniques: patients mastered procedures well and made few mistakes. In contrast, diabetic patients seem to have problems learning skills, such as insulin dose adjustment, that require complex problem-solving (involving multiple variables). Based on these findings, the authors discuss the notions of learning complexity and the time needed for successful patient education. 1998 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Learning difficulties; Diabetic patients; Educators
1. Introduction Patient education has been an integral part of diabetes treatment for over 30 years. In all countries, it is agreed that educating diabetic patients is effective, particularly in reducing the number of hospitalizations, improving glycemic balance and reducing or delaying complications [1–3]. In France, nearly all diabetes departments have instituted patient education programmes, but they are not uniform and vary
*Corresponding author.
from team to team [4]. We showed in an earlier study that diabetes educators employ a wide range of teaching approaches, although a few programme models tend to predominate [5]. Consequently, the real problem today is not to demonstrate the effectiveness of diabetic patient education, but to determine which pedagogical approaches are more effective [6]. A recent survey by Albano [7] of the ‘‘Medline’’ literature published over the last 10 years (1986–96) found that, of 57 401 references on diabetes, 9111 mentioned patient education, 946 focused on the education of diabetic patients and just 38 presented
0738-3991 / 98 / $19.00 1998 Elsevier Science Ireland Ltd. All rights reserved. PII: S0738-3991( 98 )00051-2
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C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
random experimental studies. In those 38 experiments, the general objectives were defined in 57% of the cases, and the specific objectives, in 43%. The teaching methods were interactive in 60% of the cases, and multi-disciplinary teams provided the instruction in 51%. Another question of interest to educators concerns the amount of time required to educate IDDM and NIDDM patients, both initially and in continuing education. A recent survey [6] of 400 caregivers indicated that 8 to 10 h were needed for the initial education of IDDM patients, and 12 to 14 h for their follow-up training. The initial education of NIDDM patients normally required 5 to 6 h and their continuing education, 8 to 10 h. Our approach to the problem of the right education for diabetic patients (IDDM and NIDDM) is somewhat different. Independent of programme type or training duration, we wondered which skills were the easiest to teach patients, which were the hardest to teach them and which ones diabetics were still the weakest in after their education was completed. The purpose of this study was to determine the relative difficulty of achieving the various objectives of diabetic patient education, so that health professionals can rethink their teaching methods and better estimate the time needed for it. Thus, we surveyed a sample of 85 French caregivers, all involved in the education of diabetic patients.
2. Methods The group surveyed consisted of 85 respondents. Their professional breakdown was as follows: (i)
seven physicians; (ii) six dieticians and (iii) 72 nurses. For inclusion in the sample of health care professionals, a caregiver had to: (1) work in the field of diabetes and nutrition; (2) be actively involved in patient education and (3) have undergone formal training in diabetic patient education. Personally-addressed questionnaires were sent to 212 diabetes / internal medicine and diabetes departments in 143 French cities. The sample was drawn from a total of 400 caregivers who had completed the training organized by the Institut de Perfectionne´ ment en Communication et Education Medicale (IPCEM, Institute for Advanced Medical Communication and Education) within the last four years. The response rate was 40% (n 5 85). The questionnaire contained five open-ended questions (Table 1) and a space for additional comments. It was made clear that the word ‘‘skills’’ included not only cognitive skills (knowledge, reasoning ability), but also technical skills (abilities) and attitudes. The responses obtained were analyzed using the content analysis method; they were broken down into 26 response sub-categories and then those responses were grouped into nine categories (Table 2). In analyzing questions 1 to 5, the responses were tallied by category with allowance made for synonyms and equivalent responses. The different groupings explain why in some cases the number of responses exceeded the number of respondents. Additional comments were not classified into groups. The correlation between the number of responses to the questions was determined using the Spearman rank correlation test, and the usual level of p 5 0.05 or better was considered significant.
Table 1 Questionnaire sent to the caregivers National survey on the education of diabetic patients Question 1 Question 2 Question 3 Question 4 Question 5
As an educator, what skills do you consider to be the most difficult to teach diabetic patients (IDDM and NIDDM)? ]]]]]] As an educator, what skills do you consider to be the easiest to teach diabetic patients (IDDM and NIDDM)? ]]]]] During your various evaluations, which skills do you find patients have mastered the least well? ]]]]]]] During your various evaluations, which skills do you find patients have mastered the best? ]]]]] In your experience, which errors do patients persist in making, even after continuing education? ]]
Your comments on any aspect of patient learning difficulties
C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
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Table 2 Response categories (9) and sub-categories (26), defined after analyzing caregiver responses using the content analysis method Illness (diabetes)
Self-monitoring
Disease management
General knowledge Knowledge of complications
Urinary monitoring technique Blood glucose level monitoring technique Notebook record
Adjustment of doses Adjustment of physical activity Adjustment to new situations Prevention / consultation / follow-up Restrictions Reasoning logic Compliance with treatment (NIDDM)
Intrepretation of results
Hypoglycaemic episodes
Hyperglycaemic episodes
Insulin
Recognition, prevention What to do
What to do
Preparation / injection technique Rotation of injection sites
Diet, nutrition
Hygiene /Aespsis
Behaviuor /attitude
Nutritional balance / monitoring Glucide equivalencies Lipid checks
Foot care
Acceptance Motivation / confidence Personal support system Adjustment and change in habits
3. Results The analysis of responses produced several interesting findings (Table 3). On the whole, management of their illness seems to be the hardest thing to teach diabetes patients (cited 96 times). Patients showed the poorest mastery of management skills (cited 85 times), which gave rise to a large number of persisting errors (cited 60 times) after training was completed. The complexity of learning to adjust insulin doses is what make diabetes management so difficult to instil. Insulin adjustment was the skill that was hardest to teach (mentioned 51 times out of 96) and mastered most poorly (54 / 85), with persisting errors (35 / 60). The difficulties with management also stem from the complexity of diabetic diets (48 / 239 as the hardest; 33 / 220 as the least well mastered; and 38 / 171 as causing persisting errors), notably because of the need to maintain and follow a specific nutritional balance (hardest skill, 30 / 48; lowest skill mastery, 20 / 33; persisting errors, 33 / 38). It also appears difficult to change patients’ attitudes toward their illness, mainly because of the difficulty in changing habits. Respondents rated hygiene and asepsis as difficult habits to instil (16 / 239). Both ranked among the abilities patients
mastered the least well (15 / 220) and in which they continued to make errors after education (16 / 171). This seems especially true of foot care instruction. Other patient education objectives seemed easier to achieve, and patients mastered those areas better. Examples include self-monitoring, the easiest to teach (mentioned 92 / 210) and the best mastered skill (94 / 199). In particular, patient monitoring of blood glucose levels ranked as the easiest skill to teach (52 / 92; best mastered 58 / 94; with no errors persisting after education). Patient urine self-checks came in second (easiest skill, 25 / 92; best mastered, 26 / 94; with no persisting errors). Insulin injection techniques also seem fairly easy to teach (cited 57 / 210 as the easiest skill to teach, mentioned 54 / 199 as the best mastered and with no persisting errors after education). On the other hand, caregiver opinions concerning teaching injection-site rotation were less conclusive. Comparisons were made of the educators’ opinions of the difficulty of teaching patients what to do in the event of hypoglycaemia and hyperglycaemia. Nineteen respondents considered handling hypoglycaemia an easy skill to teach, one that patients mastered well, although some errors persisted after education (cited 11 / 62). Hyperglycaemia is a different story. The skills needed to deal with excess blood
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Table 3 Caregiver responses, by categories (9) and sub-categories (26) Categories and sub-categories
Quest 1 Hardest skills
Quest 2 Easiest skills
Quest 3 Lowest level of mastery
Quest 4 Highest level of mastery
Quest 5 Persisting errors
Frequency
Knowledge of the disease General knowledge Knowledge of complications
19 13 6
11 10 1
12 8 4
10 10 0
3 3 0
55
Self-monitoring Urinary technique Blood glucose level technique Notebook record Interpretation of results
10 1 5 4 3
92 a 25 52 9 0
9 1 2 6 10
94 a 26 58 7 0
3 0 0 3 1
208
96 a 51 8 5 17 5 4 3
11 1 2 0 5 0 0 3
85 a 54 1 9 13 3 1 0
12 2 0 0 6 3 0 1
60 a 35 6 2 10 5 0 0
278 b
5 0 5
19 2 17
8 2 6
19 a 5 12
11 3 8
62
11 a 10
3 0
27 a 23
1a 0
14 14
56
4 1 3
60 57 3
10 3 7
56 54 2
6 0 6
136
Diet /nutrition Nutritional balance / monitoring Glucide equivalencies Lipid checks
48 30 18 0
8 3 3 2
33 20 13 0
5 4 0 1
38 33 3 2
132
Hygiene /asepsis Foot care Other
16 9 7
5 3 2
15 11 4
1 1 0
16 9 7
53
Behaviour /attitude Acceptance Motivation / confidence Personal support system Adjustment / change in habits
27 8 3 3 13
1 0 0 0 1
11 3 1 4 3
1 0 1 0 0
19 a 2 4 2 10
59
239
210
220
199
171
Disease management Adjustment of insulin doses Adjustment of physical activity Adjustment to new situations Prevention / consultation / follow-up Restrictions Reasoning / logic Compliance with treatment (NIDDM) Hypoglycaemic episodes Recognition / prevention What to do Hyperglycaemic episodes What to do Insulin Technique: preparation / injection Rotation of injection sites
Total a
Indicates a higher total for the category than for the sub-categories that make it up, because of responses matching the category designation alone. Example: Self-monitoring, question 2: category 5 92, sub-categories 5 86. Six of the responses consisted of ‘‘self-monitoring.’’ b The citation frequency of the interpretation of results sub-category was added to the citation frequency of the category.
Hardest skills (n 5 239)
Easiest skills (n 5 210)
Skills with the lowest level of mastery (n 5 220)
Skills with the highest level of mastery (n 5 199)
Persisting errors (n 5 171)
1. Adjustment of insulin doses; 51
1. Insulin injection technique; 57
1. Adjustment of insulin doses; 54
1. Technique for patient monitoring of blood glucose level; 58
1. Adjustment of insulin doses; 35
2. Nutritional balance; 30
2. Technique for patient monitoring of blood glucose level; 52
2. What to do in case of hyperglycaemia; 27
2. Injection technique; 54
2. Nutritional balance; 33
3. Glucide equivalencies; 18
3. Technique for patient monitoring of urine; 25
3. Nutritional balance; 20
3. Technique for patient monitoring of urine; 26
3. What to do in case of hyperglycaemia; 14
4. Prevention / follow-up / consultations; 16
4. What to do in case of hypoglycaemia; 17
4. Glucide equivalencies prevention / consultations / follow-up; 13
4. What to do in case of hypoglycaemia; 12
4. Prevention / follow-up / consultations, Changes in habits; 10
5. Changes in habit and general knowledge; 13
5. General knowledge; 10
5. Foot care; 11
5. General knowledge; 10
5. What to do in case of hypoglycaemia, Foot care; 11
C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
Table 4 Frequency distribution of caregiver responses, ranked in decreasing order on the 26 sub-categories
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glucose were rated harder to teach (cited as a harder skill 11 / 56; as less well mastered, 27 / 56; and subject to persisting errors, 14 / 56). For patient knowledge of diabetes, general knowledge about the disease (physiopathology, knowledge of the role of insulin, knowledge of food categories) was separated from knowledge of the complications of the illness in the response sub-categories. The responses indicated that patients do not invariably find this kind of knowledge easy to acquire. Caregiver opinions were mixed. Nineteen of them considered such knowledge difficult to teach and that patients failed to master it (12 / 55). On the other hand, 11 caregivers found general knowledge and knowledge of complications easy to teach, and believed that their patients had mastered them well (10 / 55). Table 4 lists the five most frequently cited subcategories, in descending order, for each question. This summary illustrates the hierarchy of complexity of the skills to be taught, the degree of their mastery by patients and the rate of errors persisting after completion of patient education (Table 4). On the whole, caregiver responses were consistent. When it comes to response categories, there was a positive overall correlation between the number of times the categories ‘‘Disease management’’, ‘‘Diet / nutrition’’, ‘‘Behaviour / attitudes’’, ‘‘Hygiene / asepsis’’ and ‘‘Hyperglycaemic episodes’’ were cited as the most difficult skills and the number of times they were rated as the most poorly mastered by patients (r 5 0.94; p 5 0.02). The skills considered the most difficult to teach were also the ones with the highest rate of persisting errors (r 5 0.95; p 5 0.04). The skills considered easiest-self-monitoring, insulin, hypoglycaemia-were mastered the best by patients (r 5 0.98; p , 0.01), although some errors persisted (for instance, concerning what to do about hypoglycaemia).
4. Discussion While this study had certain limitations, chief among them being the fairly small number of respondents, the percentage of returned questionnaires is acceptable for the type of survey method employed (i.e., mailed, open-ended ques-
tionnaires) [8,9]. The method was chosen in order to give caregivers time to think and prepare considered written responses to the questions. Given the high workload of medical teams during the day, the authors felt that any other survey method (telephone interviews for example) would be more difficult to carry out and, most important, would not give respondents the time they needed to think about the questions. Another limitation was that caregivers were questioned about the difficulties of educating both IDDM and NIDDM patients. Theoretically, the two types of diabetes call for distinct objectives and educational programmes, except for the NIDDM patients (usually insulin-dependent) taught and treated in hospitals. In France, it is primarily patients in this NIDDM category that take part in the same teaching programme as IDDM patients. The other NIDDM patients are usually treated and taught, if they receive instruction at all, by general practitioners outside a hospital setting. Moreover, the study obviously could not bring out the kind of treatment the patients were receiving, a factor that might have influenced the caregivers’ responses. However, the fact is that the survey focused on the difficulties in teaching diabetic patients from the standpoint of those doing the teaching. The questions posed were broad and open enough to bring out nuances or concepts particular to patient type in responses involving treatment strategies. Moreover, educational programmes in France differ considerably from one clinical department to another [5]. However, the most common patient education programme in diabetes departments is the week-long course, that is, a five-day hospital stay during which patients are studied and taught. Judging from the responses given to the openended questions, the respondents cited the same topics and goals (knowledge of the illness, adjustment of insulin doses, hypoglycaemia, etc.) apparently regardless of programme type. This suggests that the pedagogical differences among patient education programmes for diabetics have more to do with the educational techniques, order in which topics are taught, emphasis on specific objectives, programme length and composition of the instructional team. The basic objectives of diabetic patient education appear to be identical for all the respondents, sug-
C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
gesting that the difficulties they mentioned are common. The most important finding of this study is that the greatest difficulty is found with cognitive skills involving interpretation of information and problem solving. At work is a process described by cognitive psychology researchers [10] as: a shift from lowerlevel cognitive skills (memorization or simple retention of information from authoritative sources) to higher intellectual skills (analysis, assessment and acceptance of personal responsibility for ones choices). Insulin dose adjustment ranks at the top of skills educators believe patients have mastered the least well (and which generate a high number of persisting errors after education). The difficulty seems to stem from the complexity of the task. Indeed, patients must make a decision (to adjust insulin doses) based on earlier information (previous doses of insulin injected), current information (results of blood glucose level checks) and anticipated factors, such as physical exertion and food intake. Consequently, they must incorporate different variables in three time frames (past, present and future) in their reasoning, and patients might view this as an additional obstacle for someone forced to live ‘‘day to day’’. Second, special dietary requirements also demand reasoning and decision-making based on multiple variables. According to the responses given by the educators, patients seem to have more trouble learning procedures than they do theoretical or factual information. Once again, we run up against a problem that has long been recognized: diabetics’ poor compliance with their prescribed diets. In dietetics, controlling glucide equivalencies is an especially acute problem. The prospective study by Mulloch et al. [11] showed that new educational methods (such as hands-on experience at meal-times or videocassette instruction) are more effective than conventional dietary instruction sheets. The authors demonstrated that these hands-on and visual methods have a strong influence on knowledge, compliance and metabolic control in diabetic patients. A survey of glucide equivalence instruction given to IDDM and NIDDM patients has also shown that, on their return home, they had trouble weighing their food as they had been taught. Patients preferred to estimate the
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amount of food they ate using measurements that were more real to them and convenient to use in their daily lives, such as units, teaspoons or plates [12]. The educators surveyed felt that patients also had a problem learning and applying strategies for dealing with hyperglycaemia and hypoglycaemia. A major stumbling block in teaching patients how to manage hyperglycaemia is the complexity in teaching them the concept of acetonuria (often associated in educator responses). Thus, persisting errors after education usually seem to stem from a poor integration of information on the part of patients. In contrast, information on how to deal with episodes of hypoglycaemia appears easy to teach and patients master it well. Nonetheless, the educators noted persisting errors after education, raising questions about the patients’ ability to apply their knowledge in a crisis. It is reasonable to conclude that improving knowledge about hypoglycaemia does not necessarily lead to a change in behaviour towards hypoglycaemia. An earlier study by Beeney and Dunn [13] suggested as much when it confirmed that better knowledge of the causes of hypoglycaemic episodes was not a predictor of changes in their frequency. The study concluded that education needed to focus on the observable behaviours and attitudes of patients. One obstacle cited by caregivers to changing patient attitudes about their illness is motivation. Behaviours that demand discipline on a daily basis, such as foot care, also seem difficult to instil in patients. In the opinion of the educators, this appears to have nothing to do with the content of instruction, but rather stems from the difficulty of motivating patients sufficiently to overcome their resistance to the burden of regular monitoring and care (as with foot care). However, we believe that such an analysis obscures other aspects of the problem of teaching foot care to patients. It has been noted, for example, that patients often do not understand the meaning of terms used during podology consultations [14]. Technical terms can be memorized without necessarily being understood. When the perceived message is not correct, the ensuing behaviour is likely to be incorrect as well. This has also been shown in the case of patients’ understanding of certain medical terms used in connection with diabetic retinopathy [15]. In both these studies, the authors were surprised
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C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
that socio-cultural variables had no effect on patients’ understanding of medical terms. It seems therefore essential that caregivers verify that their patients have in fact understood, whatever their background. In general, this study shows that the content of diabetic patient education is far from uniform both in terms of the number of concepts taught and the complexity of the cognitive structures of which those concepts are a part. There is a pedagogical lesson to be learned here: the hardest skills to teach patients require a greater investment of time along with specific teaching methods to facilitate learning (case studies, problem solving, etc.). Moreover, the time scheduled for patient education must be based on the difficulty of the skills to be taught and not be set a priori. Other studies are required to determine the average amount of time patients need to master each of the basic objectives in their training. When figures are given for the number of hours required for diabetic patient education, it is possible that, once again, teaching time is confused with learning time [6]. Such confusion is common in nearly all areas of education. Programme directors and instructors decide the amount of time needed to learn a discipline or subject based on criteria that may be more ‘‘teacher-centred’’ than ‘‘student-centred’’. Admittedly, curricula cannot be extended indefinitely. But in the case of patient education, educators who monitor their patients’ health over the course of many years have the opportunity to see them regularly. Consequently, they have more time to ensure that especially difficult skills are mastered [16,17].
5. Conclusion Several authors [17,18] have pointed out how difficult it is to educate patients, given their diverse backgrounds, varying degrees of motivation and differing learning abilities. This study focused solely on the pedagogical aspects of patient education and, in particular, on learning difficulties as perceived by patient educators. The greatest problem seems to lie in going beyond the transmission of information and instilling lasting and reliable behaviours. According to the patient
educators surveyed, the three hardest skills to teach diabetic patients are those involving relatively complex tasks that demand real reasoning ability, such as adjusting insulin doses. Patients show the lowest levels of mastery and the highest rates of persisting errors for skills that require them to solve problems involving multiple variables. In contrast, teaching practical techniques seems much easier; patients learn hands-on skills well and make fewer errors. This is consistent with what has long been known in the field of education, namely that mastering a reasoning or decision-making process requires more effort than learning factual information or technical procedures. Consequently, the amount of time devoted to teaching reasoning or decision-making to diabetic patients should not be set a priori by caregivers, but established in accordance with how complex patients find these skills to learn. Since this study surveyed a small number of educator / caregivers, further studies on a larger sample of professionals (physicians, nurses, dieticians) are needed. In addition, the survey solicited the opinions of educators only, and not patients. That is why we have initiated another nation-wide study, this time with diabetic patients, to ascertain the care and management topics they find easy or difficult to grasp.
Acknowledgements The authors would like to thank Dr. Jean-Luc ´ Bosson of the Service d’Information Medicale at the Centre Hospitalier Universitaire de Grenoble (France) and the Institut de Perfectionnement en ´ Communication et Education Medicales (IPCEM), ` 92807 Puteaux (France), for their 13 Rue Jean Jaures help.
References [1] Assal J, Ekoe JM, Lacroix A. L’enseignement aux malades ` therapeutique ´ sur sa maladie et son traitement: un succes – ´ ´ ´ de Diabetologie, ´ ˆ un echec du corps medical. Journees Hotel ´ Dieu Paris, Flammarion – Medecine – Sciences, Paris, 1984:193–207.
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The Diabetes Control and Complications Trial Research Group The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. New Engl J Med 1993;329:977–86. Reichard P, Nilsson BY, Rosenqvist U. The effect of long term intensified insulin treatment on the development of microvascular complications of diabetes mellitus. New Engl J Med 1993;329:304–9. Gagnayre R, d’Ivernois JF. Evaluation of a national educating diabetic educator ‘‘programme in France’’. Patient Educ Couns 1994;3:57. d’Ivernois JF, Gagnayre R et al. A national survey on educational practices on diabetic education in French hospi´ ´ tals – International Diabetes – Federation, Diabetes care and research in Europe, 3rd European Meeting for the Implementation of St.-Vincent Declaration, Athens, Greece, Georg Thieme Verlag, 1995. Assal J, Jacquemet S. EASD Annual meeting – DESG Study Group, Symposia, Patient education revisited – From learning techniques to long-term follow-up, Vienna: 1st September, 1996. Albano MG. Symposium: il diabete non -insulino-dependente, Accadia: 30–31 October, 1996. WHO. Health interview surveys – towards international harmonization of methods and instruments. Copenhagen: WHO Regional Publications, (European Series No. 58), 1996:37. ´ Grawitz M. Methodes des sciences sociales. 1Oth ed. Paris: ´ Dalloz (Precis Dalloz, droit public, science politique), 1996:613.
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[10] Sviniki M. Practical implications of cognitive theories In: New direction for teaching and learning, No. 45, Spring 1991. [11] McMulloch KD, Mitchell DR, Ambler J, Tattersall BR. Influence of imaginative teaching of diet on compliance and metabolic control in insulin dependant diabetes. Br Med J 1983;287:xx. [12] Kerveadou MT, Marie A, Senegas C, Gagnayre R, d’Ivernois ´ ´´ JF. Pedagogie de la dietetique: vers un enseignement plus ´ ´ realiste de l’enseignement des equivalences glucidiques aux ´ patients diabetiques. Bull d’Educ Patient 1992;11:87–8. [13] Beeney LJ, Dunn SM. Knowledge improvement and metabolic control in diabetes education: approaching the limits? Patient Educ Couns 1990;16:217–29. [14] Binyet S, Aufseesser M, Lacroix A, Assal J. Le pied ´ diabetique – diverses conceptions qu’ont les patients de ´ par les medecins ´ quelques termes utilises en consultation de ` et Metabolisme. ´ podologie. Diabete Paris, 1994:275–81. ´ [15] Aufseesser M, Lacroix A, Binyet S, Assal J. La retinopathie ´ ´ ´ diabetique – comprehension de certains termes medicaux par les patients. J Franc¸ais d’Ophtalmol 1995;18:27–32. ´ – de la [16] Assal J. Traitement des maladies de longue duree phase aigue au stade de la chronicite´ – une autre gestion de la maladie – un autre processus de prise en charge. En´ ´ cyclopedie Medico-Chirurgicale. Paris: Elsevier, ´ Therapeutique, 1996:25-005-A-10: 18. ´ [17] d’Ivernois JF, Gagnayre R. Apprendre a` eduquer le patient – ´ approche pedagogique. Paris: Ed. Vigot, 1995. [18] Green LW. Theories and principles of health education applied to asthma. Chest 1994;106:4.
Learning difficulties of diabetic patients: a survey of educators ´ Gagnayre, Jean-Franc¸ois d’Ivernois* Caroline Bonnet, Remi ´ de Vinci, Health Sciences Education Department, A WHO Collaborative Centre for Health Care Personnel, UFR-SMBH Leonard 74 Rue Marcel Cachin, 93017 Bobigny Cedex, France Received 12 May 1997; received in revised form 9 February 1998; accepted 16 February 1998
Abstract This study was designed to shed light on the learning difficulties of diabetic patients. An open-ended questionnaire was sent to 85 health care professionals working in the field of diabetes and nutrition who had been trained in patient education techniques. They were asked to describe the skills that were the easiest to teach patients and those that patients mastered the best, as well as the skills they found hardest to teach patients, those that patients mastered the least and those that gave rise to errors persisting after the patients education was completed. On the whole, the results showed that the educators found it easy to teach techniques: patients mastered procedures well and made few mistakes. In contrast, diabetic patients seem to have problems learning skills, such as insulin dose adjustment, that require complex problem-solving (involving multiple variables). Based on these findings, the authors discuss the notions of learning complexity and the time needed for successful patient education. 1998 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Learning difficulties; Diabetic patients; Educators
1. Introduction Patient education has been an integral part of diabetes treatment for over 30 years. In all countries, it is agreed that educating diabetic patients is effective, particularly in reducing the number of hospitalizations, improving glycemic balance and reducing or delaying complications [1–3]. In France, nearly all diabetes departments have instituted patient education programmes, but they are not uniform and vary
*Corresponding author.
from team to team [4]. We showed in an earlier study that diabetes educators employ a wide range of teaching approaches, although a few programme models tend to predominate [5]. Consequently, the real problem today is not to demonstrate the effectiveness of diabetic patient education, but to determine which pedagogical approaches are more effective [6]. A recent survey by Albano [7] of the ‘‘Medline’’ literature published over the last 10 years (1986–96) found that, of 57 401 references on diabetes, 9111 mentioned patient education, 946 focused on the education of diabetic patients and just 38 presented
0738-3991 / 98 / $19.00 1998 Elsevier Science Ireland Ltd. All rights reserved. PII: S0738-3991( 98 )00051-2
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C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
random experimental studies. In those 38 experiments, the general objectives were defined in 57% of the cases, and the specific objectives, in 43%. The teaching methods were interactive in 60% of the cases, and multi-disciplinary teams provided the instruction in 51%. Another question of interest to educators concerns the amount of time required to educate IDDM and NIDDM patients, both initially and in continuing education. A recent survey [6] of 400 caregivers indicated that 8 to 10 h were needed for the initial education of IDDM patients, and 12 to 14 h for their follow-up training. The initial education of NIDDM patients normally required 5 to 6 h and their continuing education, 8 to 10 h. Our approach to the problem of the right education for diabetic patients (IDDM and NIDDM) is somewhat different. Independent of programme type or training duration, we wondered which skills were the easiest to teach patients, which were the hardest to teach them and which ones diabetics were still the weakest in after their education was completed. The purpose of this study was to determine the relative difficulty of achieving the various objectives of diabetic patient education, so that health professionals can rethink their teaching methods and better estimate the time needed for it. Thus, we surveyed a sample of 85 French caregivers, all involved in the education of diabetic patients.
2. Methods The group surveyed consisted of 85 respondents. Their professional breakdown was as follows: (i)
seven physicians; (ii) six dieticians and (iii) 72 nurses. For inclusion in the sample of health care professionals, a caregiver had to: (1) work in the field of diabetes and nutrition; (2) be actively involved in patient education and (3) have undergone formal training in diabetic patient education. Personally-addressed questionnaires were sent to 212 diabetes / internal medicine and diabetes departments in 143 French cities. The sample was drawn from a total of 400 caregivers who had completed the training organized by the Institut de Perfectionne´ ment en Communication et Education Medicale (IPCEM, Institute for Advanced Medical Communication and Education) within the last four years. The response rate was 40% (n 5 85). The questionnaire contained five open-ended questions (Table 1) and a space for additional comments. It was made clear that the word ‘‘skills’’ included not only cognitive skills (knowledge, reasoning ability), but also technical skills (abilities) and attitudes. The responses obtained were analyzed using the content analysis method; they were broken down into 26 response sub-categories and then those responses were grouped into nine categories (Table 2). In analyzing questions 1 to 5, the responses were tallied by category with allowance made for synonyms and equivalent responses. The different groupings explain why in some cases the number of responses exceeded the number of respondents. Additional comments were not classified into groups. The correlation between the number of responses to the questions was determined using the Spearman rank correlation test, and the usual level of p 5 0.05 or better was considered significant.
Table 1 Questionnaire sent to the caregivers National survey on the education of diabetic patients Question 1 Question 2 Question 3 Question 4 Question 5
As an educator, what skills do you consider to be the most difficult to teach diabetic patients (IDDM and NIDDM)? ]]]]]] As an educator, what skills do you consider to be the easiest to teach diabetic patients (IDDM and NIDDM)? ]]]]] During your various evaluations, which skills do you find patients have mastered the least well? ]]]]]]] During your various evaluations, which skills do you find patients have mastered the best? ]]]]] In your experience, which errors do patients persist in making, even after continuing education? ]]
Your comments on any aspect of patient learning difficulties
C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
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Table 2 Response categories (9) and sub-categories (26), defined after analyzing caregiver responses using the content analysis method Illness (diabetes)
Self-monitoring
Disease management
General knowledge Knowledge of complications
Urinary monitoring technique Blood glucose level monitoring technique Notebook record
Adjustment of doses Adjustment of physical activity Adjustment to new situations Prevention / consultation / follow-up Restrictions Reasoning logic Compliance with treatment (NIDDM)
Intrepretation of results
Hypoglycaemic episodes
Hyperglycaemic episodes
Insulin
Recognition, prevention What to do
What to do
Preparation / injection technique Rotation of injection sites
Diet, nutrition
Hygiene /Aespsis
Behaviuor /attitude
Nutritional balance / monitoring Glucide equivalencies Lipid checks
Foot care
Acceptance Motivation / confidence Personal support system Adjustment and change in habits
3. Results The analysis of responses produced several interesting findings (Table 3). On the whole, management of their illness seems to be the hardest thing to teach diabetes patients (cited 96 times). Patients showed the poorest mastery of management skills (cited 85 times), which gave rise to a large number of persisting errors (cited 60 times) after training was completed. The complexity of learning to adjust insulin doses is what make diabetes management so difficult to instil. Insulin adjustment was the skill that was hardest to teach (mentioned 51 times out of 96) and mastered most poorly (54 / 85), with persisting errors (35 / 60). The difficulties with management also stem from the complexity of diabetic diets (48 / 239 as the hardest; 33 / 220 as the least well mastered; and 38 / 171 as causing persisting errors), notably because of the need to maintain and follow a specific nutritional balance (hardest skill, 30 / 48; lowest skill mastery, 20 / 33; persisting errors, 33 / 38). It also appears difficult to change patients’ attitudes toward their illness, mainly because of the difficulty in changing habits. Respondents rated hygiene and asepsis as difficult habits to instil (16 / 239). Both ranked among the abilities patients
mastered the least well (15 / 220) and in which they continued to make errors after education (16 / 171). This seems especially true of foot care instruction. Other patient education objectives seemed easier to achieve, and patients mastered those areas better. Examples include self-monitoring, the easiest to teach (mentioned 92 / 210) and the best mastered skill (94 / 199). In particular, patient monitoring of blood glucose levels ranked as the easiest skill to teach (52 / 92; best mastered 58 / 94; with no errors persisting after education). Patient urine self-checks came in second (easiest skill, 25 / 92; best mastered, 26 / 94; with no persisting errors). Insulin injection techniques also seem fairly easy to teach (cited 57 / 210 as the easiest skill to teach, mentioned 54 / 199 as the best mastered and with no persisting errors after education). On the other hand, caregiver opinions concerning teaching injection-site rotation were less conclusive. Comparisons were made of the educators’ opinions of the difficulty of teaching patients what to do in the event of hypoglycaemia and hyperglycaemia. Nineteen respondents considered handling hypoglycaemia an easy skill to teach, one that patients mastered well, although some errors persisted after education (cited 11 / 62). Hyperglycaemia is a different story. The skills needed to deal with excess blood
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Table 3 Caregiver responses, by categories (9) and sub-categories (26) Categories and sub-categories
Quest 1 Hardest skills
Quest 2 Easiest skills
Quest 3 Lowest level of mastery
Quest 4 Highest level of mastery
Quest 5 Persisting errors
Frequency
Knowledge of the disease General knowledge Knowledge of complications
19 13 6
11 10 1
12 8 4
10 10 0
3 3 0
55
Self-monitoring Urinary technique Blood glucose level technique Notebook record Interpretation of results
10 1 5 4 3
92 a 25 52 9 0
9 1 2 6 10
94 a 26 58 7 0
3 0 0 3 1
208
96 a 51 8 5 17 5 4 3
11 1 2 0 5 0 0 3
85 a 54 1 9 13 3 1 0
12 2 0 0 6 3 0 1
60 a 35 6 2 10 5 0 0
278 b
5 0 5
19 2 17
8 2 6
19 a 5 12
11 3 8
62
11 a 10
3 0
27 a 23
1a 0
14 14
56
4 1 3
60 57 3
10 3 7
56 54 2
6 0 6
136
Diet /nutrition Nutritional balance / monitoring Glucide equivalencies Lipid checks
48 30 18 0
8 3 3 2
33 20 13 0
5 4 0 1
38 33 3 2
132
Hygiene /asepsis Foot care Other
16 9 7
5 3 2
15 11 4
1 1 0
16 9 7
53
Behaviour /attitude Acceptance Motivation / confidence Personal support system Adjustment / change in habits
27 8 3 3 13
1 0 0 0 1
11 3 1 4 3
1 0 1 0 0
19 a 2 4 2 10
59
239
210
220
199
171
Disease management Adjustment of insulin doses Adjustment of physical activity Adjustment to new situations Prevention / consultation / follow-up Restrictions Reasoning / logic Compliance with treatment (NIDDM) Hypoglycaemic episodes Recognition / prevention What to do Hyperglycaemic episodes What to do Insulin Technique: preparation / injection Rotation of injection sites
Total a
Indicates a higher total for the category than for the sub-categories that make it up, because of responses matching the category designation alone. Example: Self-monitoring, question 2: category 5 92, sub-categories 5 86. Six of the responses consisted of ‘‘self-monitoring.’’ b The citation frequency of the interpretation of results sub-category was added to the citation frequency of the category.
Hardest skills (n 5 239)
Easiest skills (n 5 210)
Skills with the lowest level of mastery (n 5 220)
Skills with the highest level of mastery (n 5 199)
Persisting errors (n 5 171)
1. Adjustment of insulin doses; 51
1. Insulin injection technique; 57
1. Adjustment of insulin doses; 54
1. Technique for patient monitoring of blood glucose level; 58
1. Adjustment of insulin doses; 35
2. Nutritional balance; 30
2. Technique for patient monitoring of blood glucose level; 52
2. What to do in case of hyperglycaemia; 27
2. Injection technique; 54
2. Nutritional balance; 33
3. Glucide equivalencies; 18
3. Technique for patient monitoring of urine; 25
3. Nutritional balance; 20
3. Technique for patient monitoring of urine; 26
3. What to do in case of hyperglycaemia; 14
4. Prevention / follow-up / consultations; 16
4. What to do in case of hypoglycaemia; 17
4. Glucide equivalencies prevention / consultations / follow-up; 13
4. What to do in case of hypoglycaemia; 12
4. Prevention / follow-up / consultations, Changes in habits; 10
5. Changes in habit and general knowledge; 13
5. General knowledge; 10
5. Foot care; 11
5. General knowledge; 10
5. What to do in case of hypoglycaemia, Foot care; 11
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Table 4 Frequency distribution of caregiver responses, ranked in decreasing order on the 26 sub-categories
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glucose were rated harder to teach (cited as a harder skill 11 / 56; as less well mastered, 27 / 56; and subject to persisting errors, 14 / 56). For patient knowledge of diabetes, general knowledge about the disease (physiopathology, knowledge of the role of insulin, knowledge of food categories) was separated from knowledge of the complications of the illness in the response sub-categories. The responses indicated that patients do not invariably find this kind of knowledge easy to acquire. Caregiver opinions were mixed. Nineteen of them considered such knowledge difficult to teach and that patients failed to master it (12 / 55). On the other hand, 11 caregivers found general knowledge and knowledge of complications easy to teach, and believed that their patients had mastered them well (10 / 55). Table 4 lists the five most frequently cited subcategories, in descending order, for each question. This summary illustrates the hierarchy of complexity of the skills to be taught, the degree of their mastery by patients and the rate of errors persisting after completion of patient education (Table 4). On the whole, caregiver responses were consistent. When it comes to response categories, there was a positive overall correlation between the number of times the categories ‘‘Disease management’’, ‘‘Diet / nutrition’’, ‘‘Behaviour / attitudes’’, ‘‘Hygiene / asepsis’’ and ‘‘Hyperglycaemic episodes’’ were cited as the most difficult skills and the number of times they were rated as the most poorly mastered by patients (r 5 0.94; p 5 0.02). The skills considered the most difficult to teach were also the ones with the highest rate of persisting errors (r 5 0.95; p 5 0.04). The skills considered easiest-self-monitoring, insulin, hypoglycaemia-were mastered the best by patients (r 5 0.98; p , 0.01), although some errors persisted (for instance, concerning what to do about hypoglycaemia).
4. Discussion While this study had certain limitations, chief among them being the fairly small number of respondents, the percentage of returned questionnaires is acceptable for the type of survey method employed (i.e., mailed, open-ended ques-
tionnaires) [8,9]. The method was chosen in order to give caregivers time to think and prepare considered written responses to the questions. Given the high workload of medical teams during the day, the authors felt that any other survey method (telephone interviews for example) would be more difficult to carry out and, most important, would not give respondents the time they needed to think about the questions. Another limitation was that caregivers were questioned about the difficulties of educating both IDDM and NIDDM patients. Theoretically, the two types of diabetes call for distinct objectives and educational programmes, except for the NIDDM patients (usually insulin-dependent) taught and treated in hospitals. In France, it is primarily patients in this NIDDM category that take part in the same teaching programme as IDDM patients. The other NIDDM patients are usually treated and taught, if they receive instruction at all, by general practitioners outside a hospital setting. Moreover, the study obviously could not bring out the kind of treatment the patients were receiving, a factor that might have influenced the caregivers’ responses. However, the fact is that the survey focused on the difficulties in teaching diabetic patients from the standpoint of those doing the teaching. The questions posed were broad and open enough to bring out nuances or concepts particular to patient type in responses involving treatment strategies. Moreover, educational programmes in France differ considerably from one clinical department to another [5]. However, the most common patient education programme in diabetes departments is the week-long course, that is, a five-day hospital stay during which patients are studied and taught. Judging from the responses given to the openended questions, the respondents cited the same topics and goals (knowledge of the illness, adjustment of insulin doses, hypoglycaemia, etc.) apparently regardless of programme type. This suggests that the pedagogical differences among patient education programmes for diabetics have more to do with the educational techniques, order in which topics are taught, emphasis on specific objectives, programme length and composition of the instructional team. The basic objectives of diabetic patient education appear to be identical for all the respondents, sug-
C. Bonnet et al. / Patient Education and Counseling 35 (1998) 139 – 147
gesting that the difficulties they mentioned are common. The most important finding of this study is that the greatest difficulty is found with cognitive skills involving interpretation of information and problem solving. At work is a process described by cognitive psychology researchers [10] as: a shift from lowerlevel cognitive skills (memorization or simple retention of information from authoritative sources) to higher intellectual skills (analysis, assessment and acceptance of personal responsibility for ones choices). Insulin dose adjustment ranks at the top of skills educators believe patients have mastered the least well (and which generate a high number of persisting errors after education). The difficulty seems to stem from the complexity of the task. Indeed, patients must make a decision (to adjust insulin doses) based on earlier information (previous doses of insulin injected), current information (results of blood glucose level checks) and anticipated factors, such as physical exertion and food intake. Consequently, they must incorporate different variables in three time frames (past, present and future) in their reasoning, and patients might view this as an additional obstacle for someone forced to live ‘‘day to day’’. Second, special dietary requirements also demand reasoning and decision-making based on multiple variables. According to the responses given by the educators, patients seem to have more trouble learning procedures than they do theoretical or factual information. Once again, we run up against a problem that has long been recognized: diabetics’ poor compliance with their prescribed diets. In dietetics, controlling glucide equivalencies is an especially acute problem. The prospective study by Mulloch et al. [11] showed that new educational methods (such as hands-on experience at meal-times or videocassette instruction) are more effective than conventional dietary instruction sheets. The authors demonstrated that these hands-on and visual methods have a strong influence on knowledge, compliance and metabolic control in diabetic patients. A survey of glucide equivalence instruction given to IDDM and NIDDM patients has also shown that, on their return home, they had trouble weighing their food as they had been taught. Patients preferred to estimate the
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amount of food they ate using measurements that were more real to them and convenient to use in their daily lives, such as units, teaspoons or plates [12]. The educators surveyed felt that patients also had a problem learning and applying strategies for dealing with hyperglycaemia and hypoglycaemia. A major stumbling block in teaching patients how to manage hyperglycaemia is the complexity in teaching them the concept of acetonuria (often associated in educator responses). Thus, persisting errors after education usually seem to stem from a poor integration of information on the part of patients. In contrast, information on how to deal with episodes of hypoglycaemia appears easy to teach and patients master it well. Nonetheless, the educators noted persisting errors after education, raising questions about the patients’ ability to apply their knowledge in a crisis. It is reasonable to conclude that improving knowledge about hypoglycaemia does not necessarily lead to a change in behaviour towards hypoglycaemia. An earlier study by Beeney and Dunn [13] suggested as much when it confirmed that better knowledge of the causes of hypoglycaemic episodes was not a predictor of changes in their frequency. The study concluded that education needed to focus on the observable behaviours and attitudes of patients. One obstacle cited by caregivers to changing patient attitudes about their illness is motivation. Behaviours that demand discipline on a daily basis, such as foot care, also seem difficult to instil in patients. In the opinion of the educators, this appears to have nothing to do with the content of instruction, but rather stems from the difficulty of motivating patients sufficiently to overcome their resistance to the burden of regular monitoring and care (as with foot care). However, we believe that such an analysis obscures other aspects of the problem of teaching foot care to patients. It has been noted, for example, that patients often do not understand the meaning of terms used during podology consultations [14]. Technical terms can be memorized without necessarily being understood. When the perceived message is not correct, the ensuing behaviour is likely to be incorrect as well. This has also been shown in the case of patients’ understanding of certain medical terms used in connection with diabetic retinopathy [15]. In both these studies, the authors were surprised
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that socio-cultural variables had no effect on patients’ understanding of medical terms. It seems therefore essential that caregivers verify that their patients have in fact understood, whatever their background. In general, this study shows that the content of diabetic patient education is far from uniform both in terms of the number of concepts taught and the complexity of the cognitive structures of which those concepts are a part. There is a pedagogical lesson to be learned here: the hardest skills to teach patients require a greater investment of time along with specific teaching methods to facilitate learning (case studies, problem solving, etc.). Moreover, the time scheduled for patient education must be based on the difficulty of the skills to be taught and not be set a priori. Other studies are required to determine the average amount of time patients need to master each of the basic objectives in their training. When figures are given for the number of hours required for diabetic patient education, it is possible that, once again, teaching time is confused with learning time [6]. Such confusion is common in nearly all areas of education. Programme directors and instructors decide the amount of time needed to learn a discipline or subject based on criteria that may be more ‘‘teacher-centred’’ than ‘‘student-centred’’. Admittedly, curricula cannot be extended indefinitely. But in the case of patient education, educators who monitor their patients’ health over the course of many years have the opportunity to see them regularly. Consequently, they have more time to ensure that especially difficult skills are mastered [16,17].
5. Conclusion Several authors [17,18] have pointed out how difficult it is to educate patients, given their diverse backgrounds, varying degrees of motivation and differing learning abilities. This study focused solely on the pedagogical aspects of patient education and, in particular, on learning difficulties as perceived by patient educators. The greatest problem seems to lie in going beyond the transmission of information and instilling lasting and reliable behaviours. According to the patient
educators surveyed, the three hardest skills to teach diabetic patients are those involving relatively complex tasks that demand real reasoning ability, such as adjusting insulin doses. Patients show the lowest levels of mastery and the highest rates of persisting errors for skills that require them to solve problems involving multiple variables. In contrast, teaching practical techniques seems much easier; patients learn hands-on skills well and make fewer errors. This is consistent with what has long been known in the field of education, namely that mastering a reasoning or decision-making process requires more effort than learning factual information or technical procedures. Consequently, the amount of time devoted to teaching reasoning or decision-making to diabetic patients should not be set a priori by caregivers, but established in accordance with how complex patients find these skills to learn. Since this study surveyed a small number of educator / caregivers, further studies on a larger sample of professionals (physicians, nurses, dieticians) are needed. In addition, the survey solicited the opinions of educators only, and not patients. That is why we have initiated another nation-wide study, this time with diabetic patients, to ascertain the care and management topics they find easy or difficult to grasp.
Acknowledgements The authors would like to thank Dr. Jean-Luc ´ Bosson of the Service d’Information Medicale at the Centre Hospitalier Universitaire de Grenoble (France) and the Institut de Perfectionnement en ´ Communication et Education Medicales (IPCEM), ` 92807 Puteaux (France), for their 13 Rue Jean Jaures help.
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