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Difficulties of diabetic patients in learning about their illness
Patient Education and Counseling 42 (2001) 159–164 www.elsevier.com / locate / pateducou
Difficulties of diabetic patients in learning about their illness ´ Gagnayre, Jean Franc¸ois d’Ivernois* Caroline Bonnet, Remi Health Education Laboratory, WHO Cooperating Centre for Development of Human Resources in Healthcare, ´ UFR-SMBH Leonard de Vinci, Bobigny Cedex, France Received 11 February 1998; received in revised form 5 January 2000; accepted 20 February 2000
Abstract The aim of this report is to shed light on the difficulties experienced by diabetic patients in learning about their illness. One hundred and thirty-eight diabetic people (97 IDD and 41 NIDD) were questioned at two survey locations, one national (63) and one regional (75), by means of a closed answer questionnaire. One hundred and four (75%) had attended a formal programme of diabetes education. They were asked which points in their diabetes education they had best understood and which they had least understood. The main results show that, globally, they easily acquire the manual skills. Conversely, numerous learning difficulties are associated with the skills required to solve problems and make decisions, such as adaptation of doses of insulin. These results are comparable to those obtained in a previous study in which professional carers were asked about their difficulties in educating their patients. 2001 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Patient education; Diabetic patients; Learning difficulties; Opinion survey
1. Introduction The education of diabetic patients — the effectiveness of which has been demonstrated by achieving a better glycaemic balance, reducing admissions to hospital and delaying the appearance of complications in numerous studies [1–5] — still raises
´ Medecine ´ *Corresponding author. UFR Sante, et Biologie Humaine ‘L. de Vinci’, 74 rue Marcel Cachin, 93017 Bobigny Cedex, France. Tel.: 133-1-4838-7641; fax: 133-1-4838-7619. E-mail address: [email protected] (J. Franc¸ois d’Ivernois).
0738-3991 / 01 / $ – see front matter PII: S0738-3991( 00 )00106-3
questions regarding the educational organization and efficiency of the educational programme. In particular, while it is clear that patient motivation is essential in applying what has been learned [6], the problem of learning difficulties regarding management of the disease is still little explored. In previous research [7], we questioned a panel of 85 educator / carers, working in 212 diabetes units in France, asking them which points were most difficult to teach to diabetics. Their answers to these questions showed that technical skills seemed easier to teach than complex operations requiring the patient to reason (diet, adaptation of doses). We therefore wished to ascertain the opinion of diabetics on the
2001 Elsevier Science Ireland Ltd. All rights reserved.
160
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164
same subject: what is easy and what is difficult to understand in managing diabetes? From the methodological viewpoint, we had the possibility of questioning IDD and NIDD patients in various hospitals. However, this approach would have led us to compare, via the patients’ answers, different educational programmes, which was not the aim of our research. This is why we opted for a ` national survey with the help of the Espace Diabete, an advisory and after-sales service of Bayer Diagnostics. This freephone service takes calls from patients (IDD and NIDD) from all over France with a glycaemic self-monitoring device. During some of ` counsellors (three nurses these calls, Espace Diabete specialized in diabetology) asked patients to respond to our questionnaire. On the other hand, it seemed important to compare and contrast the responses from this national sample with those from patients educated in a diabetes unit. The diabetologist and three nurses-educators of the diabetes unit of a regional hospital agreed to cooperate in the study. The principal aim of this study was therefore to ask patients in a national sample and in a local sample what they had understood and what they had not yet understood after education in management of their diabetes. We chose to group IDD and NIDD patient responses with regard to knowledge and techniques which were common to them, and to differentiate the IDD patient responses for aspects specific to their self-treatment (insulin injection, adaptation of insulin doses).
2. Methods The questionnaire was validated by two teams and was identical in both survey locations. It consisted of four sections. The first covered general characteristics of the patient (IDD/ NIDD, age, length of time with illness, etc.). The second section contained questions on the existence and length of education about their illness. The third section, containing a question with a choice of answers (what have you clearly understood?), proposed six fundamental points from the diabetes education programme. Finally, an open question (what have you not yet understood?) completed the questionnaire.
` answers were taken over At the Espace Diabete, the telephone. Patients questioned were questioned on a random basis over a period of 13 weeks (the first patient calling after 11.00 h every day of the week. Sixty-three patients, among 65, agreed to answer the questionnaire). In the regional hospital, the questionnaire was given to patients coming to the diabetes unit for treatment over a period of 2 months (answer rate 90%). The frequency of responses to the open ended questions (sections 1, 2, and 3) was computed and the correlations between the responses determined using a chi-square test (P # 0.05). The usual level of P 5 0.05 or better was considered significant. The responses obtained to the open question were analysed using the content analysis method [9]. They were grouped into seven categories: management of illness, diet, general knowledge of illness, acceptance of illness, selfmonitoring, foot care, and hypoglycaemia. Additional comments were not classified into groups but noted.
3. Results In total, 138 questionnaires were returned, breaking down in accordance with source as follows: regional hospital (75 questionnaires) and Espace ` (63 questionnaires). More than half of the Diabete patients, i.e. 98 / 138 (71%), answered the open question at the end of the questionnaire. The average age of the patients surveyed was 55 years with a standard deviation of 616 and a range of 13–84 years. Insulin-dependent (IDD) patients represented about two patients out of three, or 70% (97 / 138) of the sample, versus 30% (41 / 138) for non-insulindependent (NIDD) patients. IDD patients had insulin injection treatment with the exception of one who had a portable insulin pump. Among the 138 patients, 30 had a close relative who was diabetic (grandparents, parents, brother, sister). For both IDD and NIDD, the average length of time for which they suffered from diabetes was 14 years with a standard deviation of 610 and an age range from 1 to 44 years. Seventy-five percent of patients (104 / 138) had attended a formal educational programme concerning
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164 Table 1 Frequency distribution of replies to the question ‘‘What have you clearly understood?’’ asked of educated patients (IDD and NIDD a) Objectives of education programme
Frequency
Understood (%)
Injection mode Self-monitoring Diet Adaptation of doses Illness Foot care
74 / 81 95 / 104 86 / 104 66 / 81 80 / 104 78 / 104
91 91 82 81 77 75
a For the results regarding injection mode and adaptation of doses the denominator is the 81 IDD patients, whereas the results for the other categories were calculated with the total number of educated patients IDD1NIDD.
their condition and in 43% of cases the education was more recent than 1 year. Table 1 shows that the majority of patients felt that they had understood the basic points of their education. Technical skills (injection mode and self-monitoring) seemed well understood as was, to a lesser extent, the adaptation of insulin doses. It is with regard to knowledge about the illness and foot care where lack of understanding seems to persist most
161
On the other hand, it was found that regional hospital patients had more frequently received educa` tion on diabetes than those at the Espace Diabete: respectively 89% of patients (67 / 75) versus 59% (37 / 63), P , 0.0001. Differences were also noticed depending on location with respect to patients’ responses to questions about the disease, diet and foot care in the ‘‘what have you clearly understood?’’ question. As shown in Table 2, more patients at the regional hospital stated that they had clearly understood these three aspects of the disease than those surveyed at the ` P , 0.0001. Espace Diabete,
3.2. Replies to open question Of the 138 patients surveyed, 97 (70%) answered the open question at the end of the questionnaire ‘‘What have you still not understood about your illness? ’’. Breakdown was as follows: • 74 educated patients (of whom 21 said they had no special problems); • 23 patients who had never received any formal education about their illness (of whom two said they had no special problems).
3.1. Survey location We compared groups — educated and uneducated, IDD and NIDD — in relation to the survey location ` (regional hospital or Espace Diabete). We sought to establish in what ways the groups were comparable and in what ways they differed. A certain number of common characteristics were observed (no significant difference: P . 0.05) for patients at both locations, regarding: • average age of patients: 53 years in the regional hospital (S.D. 17) and 56 years at the Espace ` Diabete; • average length of time of suffering from diabetes: 14 years in both locations; • type of diabetes (IDD or NIDD); • having a diabetic close relative; • replies concerning self-monitoring, the mode of injection and adaptation of doses in reply to the ‘‘what have you clearly understood?’’ question.
Overall, it is the management of their illness (mentioned 32 times) that seems to cause the greatest difficulty in understanding for patients. This stems mainly from the difficulty which IDD patients have in adapting their insulin dose (mentioned 13 times / 32), but also from difficulties experienced in in situ application of the knowledge acquired (mentioned 12 times / 32). Time constraints, self-monitoring and Table 2 Significant differences depending on survey location regarding the question ‘‘What have you clearly understood?’’ Education programme points
Illness Diet Foot care
Understood
P
Regional hospital
Espace ` Diabete
Frequency
%
Frequency
%
60 63 61
80 84 81
36 38 33
57 60 52
,0.0001 ,0.0001 ,0.0001
162
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164
insulin injections also appear difficult to manage (mentioned four times / 32). Patients’ problems in understanding also result from the complexity of the diabetic diet (mentioned 25 times), especially the difficulty in maintaining a balanced diet (mentioned 16 times / 25). This difficulty appears in a higher proportion for NIDD patients (10 / 24) than for IDD patients (15 / 73). In both cases (NIDD and IDD), the obstacles seem to result from an unsatisfactory integration of knowledge about diet, but also in application of knowledge acquired in practice (mentioned seven times / 25). Regarding knowledge of diabetes, patients felt they had difficulties in understanding regarding general acquisition of knowledge (mentioned 11 times / 17) and regarding identification of complications (mentioned six times / 17). Of the patients questioned, six perceived selfmonitoring as a not clearly understood practice. For one respondent it was a problem of manual skills, whereas for another it was a question of perception of the usefulness and purpose. For the others, the lack of comment prevented us from pinpointing the cause of difficulty. Was it a technical problem, one of understanding or the usefulness of the procedure or of constraint? While only a small number of patients expressed opinions on the difficulty of accepting and living with the illness (mentioned six times), their comments sometimes indicate distress: ‘‘how can I accept this illness?’’ or ‘‘the illness takes up too much space in my life’’. Regarding foot care, three patients (one IDD and two NIDD) felt that they did not know how to monitor. It should be noted that these were all patients who said that they had had education. Finally, hypoglycaemia (mentioned twice) seemed to pose few problems of understanding for patients and it is surprising to find that no difficulty regarding the appropriate course of action appears in the replies.
4. Discussion The presented study has limitations. The overall sample of patients surveyed is relatively small and therefore cannot be considered as representative of
the global population of diabetic patients in France. Moreover, the modalities of surveying were not the same for the national and local samples. In the first case, the questionnaire was completed by a member of the medical personnel during a telephone interview. In the second, patients completed the questionnaire themselves. However, the results of our study show that the groups are homogeneous, except for a significant difference in the number of patients educated. For this reason, our discussion is focused on learning difficulties amongst educated patients, regardless of their origin. Another limitation is that we have considered IDD and NIDD patient as a whole group, but we have also chosen to group IDD and NIDD patient responses with regard to knowledge and techniques which were common to them, and to differentiate the IDD patient responses for aspects specific to their self-treatment (insulin injection, adaptation of insulin doses). When patients educated about their diabetes (IDD and NIDD) were asked about the basic points of their education, 75% affirmed that they had clearly understood what was being taught. It therefore appears that the vast majority of them consider that they have acquired the major items of knowledge they need to manage their illness. However, it may be that what patients mean by ‘education’ is that they have received an adequate body of information about their illness, without actually acquiring real skills. In answering the question ‘‘what have you not yet understood in managing your illness?’’, we expected patients to voice their difficulties regarding points in the education programme which caused them the greatest difficulty, several authors having pointed out how difficult patient education may be given the varying degrees of patient motivation and learning abilities [6,8,11]. Sometimes, we observed the opposite phenomenon. Thus patients feel they have better understood diet and adaptation of insulin doses than foot care. However, they express themselves less on the difficulties encountered in carrying out the latter. It is true that our questionnaire had a limited number of items, which limits the possible interpretations. The last question (which was the only open one) doubtless gave patients greater freedom in answering. Globally, excluding the time constraints imposed by self-monitoring or insulin injections, patients
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164
encounter difficulty when they have to use their knowledge, whether it be to balance their diet or act when faced with a new situation. Regardless of age, they express this clearly in their comments: • ‘‘How can I apply what I have understood? ’’ (age 64); • ‘‘What is hard to understand is how to get one’ s diet to correspond to one’ s activity’’ (age 18); • ‘‘Diet is understood, but difficult in practice’’ (age 71); • ‘‘How can I adapt times for meals and for injections when I am going off for a fishing competition? ’’ (age 38); • ‘‘I have understood everything, in theory, but daily make up of doses is not easy as you never know what physical activity you will have three or four hours after the injections’’ (age 43). It can therefore be seen that patients are not always able to mobilize their knowledge in order to put it into practice. However, it is because the knowledge is wide and complex that it is difficult to acquire [7,10] and also because the patients often do not understand the meaning of medical terms used by the care providers during podology consultations, for example [12], or concerning diabetic retinopathy [13]. Indirectly, patients express their difficulties in organizing the knowledge received from carers. They are not able to establish links of cause and effect, the control of which will determine their future behaviour [6]. Thus, they may ask: • ‘‘How is it that an illness which does not cause pain can cause complications (eyes, legs arteries)? ’’, or • ‘‘Why does my hypoglycaemia happen before midday? In other cases, the lack or inadequacy of links can lead to the patient carrying out tasks as a matter of pure routine without understanding their actual usefulness, as shown by Beeney and Dunn [14]. This can rapidly lead to discouragement. Finally, while patients feel that they have clearly understood the techniques of self-monitoring and insulin injection, we have observed that in acquisi-
163
tion of these practices there is no significant difference between educated and uneducated patients. This leads us to believe that we under-estimate patients’ ability to learn on their own.
5. Conclusion The study presented here addressed two groups of patients at the national and local levels. It attempted to identify their difficulties in understanding regarding the education they had received. It seems that there is not so much a problem with teaching methods but with the body of knowledge to be assimilated. The skills most difficult to obtain regarding diabetes correspond to areas of knowledge where amount and organization are the most complex. This concurs with recent research in cognitive psychology which indicates that complex knowledge must be able to fit into a patient’s prior knowledge system [6,7,10]. It appears important to us to reconsider the education of diabetic patients from the point of view of complexity of learning and, therefore, of objectives, teaching methods and the time required for education. Further studies therefore appear necessary to ascertain the learning difficulties which diabetic patients encounter during their education.
Acknowledgements The authors wish to express their thanks to the ` (Bayer Diagnostics nurses of the Espace Diabete Laboratories), to Doctor Bernard Cirette and to the nursing staff of the Diabetes–Endocrinology–Nutrition Unit of the Nevers Regional Hospital.
References [1] Miller LV, Goldstein J. More efficient care of diabetic patients in a country hospital setting. New Engl J Med 1972;286:1388–91. [2] Assal J, Ekoe JM, Lacroix A. L’enseignement aux malades ` therapeutique ´ sur la maladie et son traitement: un succes — ´ ´ un echec du corps medical (Education for subjects on their ´ de Diabetologie, ´ ˆ Dieu illness and treatment). Journees Hotel
164
[3]
[4]
[5]
[6]
[7]
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164 ´ Paris, Flammarion – Medecine – Sciences, Paris, 1984;193– 207. Davidson JK, editor, Clinical diabetes mellitus: a problem oriented approach, 2nd ed., New York: Theme Medical, 1991, pp. 341–53. 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, Rosquenvist 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. ´ d’Ivernois JF, Gagnayre R. Apprendre a` eduquer le patient ´ — approche pedagogique (Patient education), Paris: Vigot, 1995. Bonnet C, Gagnayre R, d’Ivernois JF. Learning difficulties of diabetic patients: a survey of educators. Patient Educ Couns 1998;35:139–47.
[8] Albano MG, Jacquemet S, Assal JPh. Patient education and diabetes research: a failure! Going beyond the empirical approaches. Acta Diabetol 1998;35:207–14. ´ [9] Grawitz M. Methodes des sciences sociales (Methods in Social Sciences), 10th ed., Paris: Dalloz, 1996. [10] Novak JD, Gowin DB. Learning how to learn, 2nd ed., Cambridge University Press, 1998. [11] Green LW. Theories and principles of health education applied to asthma. Chest 1994;106(4, suppl):219S–30S. [12] 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 1994;275–81. ´ [13] Aufseesser M, Lacroix A, Binyet S, Assal J. La retinopathie ´ ´ ´ diabetique — comprehension de certains termes medicaux par les patients (Diabetic vetinopathy). J Franc¸ais d’Ophtalmol 1995;18:27–32. [14] Beeney LJ, Dunn SM. Knowledge improvement and metabolic control in diabetes education: approaching the limits? Patient Educ Couns 1990;16:217–29.
Difficulties of diabetic patients in learning about their illness ´ Gagnayre, Jean Franc¸ois d’Ivernois* Caroline Bonnet, Remi Health Education Laboratory, WHO Cooperating Centre for Development of Human Resources in Healthcare, ´ UFR-SMBH Leonard de Vinci, Bobigny Cedex, France Received 11 February 1998; received in revised form 5 January 2000; accepted 20 February 2000
Abstract The aim of this report is to shed light on the difficulties experienced by diabetic patients in learning about their illness. One hundred and thirty-eight diabetic people (97 IDD and 41 NIDD) were questioned at two survey locations, one national (63) and one regional (75), by means of a closed answer questionnaire. One hundred and four (75%) had attended a formal programme of diabetes education. They were asked which points in their diabetes education they had best understood and which they had least understood. The main results show that, globally, they easily acquire the manual skills. Conversely, numerous learning difficulties are associated with the skills required to solve problems and make decisions, such as adaptation of doses of insulin. These results are comparable to those obtained in a previous study in which professional carers were asked about their difficulties in educating their patients. 2001 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Patient education; Diabetic patients; Learning difficulties; Opinion survey
1. Introduction The education of diabetic patients — the effectiveness of which has been demonstrated by achieving a better glycaemic balance, reducing admissions to hospital and delaying the appearance of complications in numerous studies [1–5] — still raises
´ Medecine ´ *Corresponding author. UFR Sante, et Biologie Humaine ‘L. de Vinci’, 74 rue Marcel Cachin, 93017 Bobigny Cedex, France. Tel.: 133-1-4838-7641; fax: 133-1-4838-7619. E-mail address: [email protected] (J. Franc¸ois d’Ivernois).
0738-3991 / 01 / $ – see front matter PII: S0738-3991( 00 )00106-3
questions regarding the educational organization and efficiency of the educational programme. In particular, while it is clear that patient motivation is essential in applying what has been learned [6], the problem of learning difficulties regarding management of the disease is still little explored. In previous research [7], we questioned a panel of 85 educator / carers, working in 212 diabetes units in France, asking them which points were most difficult to teach to diabetics. Their answers to these questions showed that technical skills seemed easier to teach than complex operations requiring the patient to reason (diet, adaptation of doses). We therefore wished to ascertain the opinion of diabetics on the
2001 Elsevier Science Ireland Ltd. All rights reserved.
160
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164
same subject: what is easy and what is difficult to understand in managing diabetes? From the methodological viewpoint, we had the possibility of questioning IDD and NIDD patients in various hospitals. However, this approach would have led us to compare, via the patients’ answers, different educational programmes, which was not the aim of our research. This is why we opted for a ` national survey with the help of the Espace Diabete, an advisory and after-sales service of Bayer Diagnostics. This freephone service takes calls from patients (IDD and NIDD) from all over France with a glycaemic self-monitoring device. During some of ` counsellors (three nurses these calls, Espace Diabete specialized in diabetology) asked patients to respond to our questionnaire. On the other hand, it seemed important to compare and contrast the responses from this national sample with those from patients educated in a diabetes unit. The diabetologist and three nurses-educators of the diabetes unit of a regional hospital agreed to cooperate in the study. The principal aim of this study was therefore to ask patients in a national sample and in a local sample what they had understood and what they had not yet understood after education in management of their diabetes. We chose to group IDD and NIDD patient responses with regard to knowledge and techniques which were common to them, and to differentiate the IDD patient responses for aspects specific to their self-treatment (insulin injection, adaptation of insulin doses).
2. Methods The questionnaire was validated by two teams and was identical in both survey locations. It consisted of four sections. The first covered general characteristics of the patient (IDD/ NIDD, age, length of time with illness, etc.). The second section contained questions on the existence and length of education about their illness. The third section, containing a question with a choice of answers (what have you clearly understood?), proposed six fundamental points from the diabetes education programme. Finally, an open question (what have you not yet understood?) completed the questionnaire.
` answers were taken over At the Espace Diabete, the telephone. Patients questioned were questioned on a random basis over a period of 13 weeks (the first patient calling after 11.00 h every day of the week. Sixty-three patients, among 65, agreed to answer the questionnaire). In the regional hospital, the questionnaire was given to patients coming to the diabetes unit for treatment over a period of 2 months (answer rate 90%). The frequency of responses to the open ended questions (sections 1, 2, and 3) was computed and the correlations between the responses determined using a chi-square test (P # 0.05). The usual level of P 5 0.05 or better was considered significant. The responses obtained to the open question were analysed using the content analysis method [9]. They were grouped into seven categories: management of illness, diet, general knowledge of illness, acceptance of illness, selfmonitoring, foot care, and hypoglycaemia. Additional comments were not classified into groups but noted.
3. Results In total, 138 questionnaires were returned, breaking down in accordance with source as follows: regional hospital (75 questionnaires) and Espace ` (63 questionnaires). More than half of the Diabete patients, i.e. 98 / 138 (71%), answered the open question at the end of the questionnaire. The average age of the patients surveyed was 55 years with a standard deviation of 616 and a range of 13–84 years. Insulin-dependent (IDD) patients represented about two patients out of three, or 70% (97 / 138) of the sample, versus 30% (41 / 138) for non-insulindependent (NIDD) patients. IDD patients had insulin injection treatment with the exception of one who had a portable insulin pump. Among the 138 patients, 30 had a close relative who was diabetic (grandparents, parents, brother, sister). For both IDD and NIDD, the average length of time for which they suffered from diabetes was 14 years with a standard deviation of 610 and an age range from 1 to 44 years. Seventy-five percent of patients (104 / 138) had attended a formal educational programme concerning
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164 Table 1 Frequency distribution of replies to the question ‘‘What have you clearly understood?’’ asked of educated patients (IDD and NIDD a) Objectives of education programme
Frequency
Understood (%)
Injection mode Self-monitoring Diet Adaptation of doses Illness Foot care
74 / 81 95 / 104 86 / 104 66 / 81 80 / 104 78 / 104
91 91 82 81 77 75
a For the results regarding injection mode and adaptation of doses the denominator is the 81 IDD patients, whereas the results for the other categories were calculated with the total number of educated patients IDD1NIDD.
their condition and in 43% of cases the education was more recent than 1 year. Table 1 shows that the majority of patients felt that they had understood the basic points of their education. Technical skills (injection mode and self-monitoring) seemed well understood as was, to a lesser extent, the adaptation of insulin doses. It is with regard to knowledge about the illness and foot care where lack of understanding seems to persist most
161
On the other hand, it was found that regional hospital patients had more frequently received educa` tion on diabetes than those at the Espace Diabete: respectively 89% of patients (67 / 75) versus 59% (37 / 63), P , 0.0001. Differences were also noticed depending on location with respect to patients’ responses to questions about the disease, diet and foot care in the ‘‘what have you clearly understood?’’ question. As shown in Table 2, more patients at the regional hospital stated that they had clearly understood these three aspects of the disease than those surveyed at the ` P , 0.0001. Espace Diabete,
3.2. Replies to open question Of the 138 patients surveyed, 97 (70%) answered the open question at the end of the questionnaire ‘‘What have you still not understood about your illness? ’’. Breakdown was as follows: • 74 educated patients (of whom 21 said they had no special problems); • 23 patients who had never received any formal education about their illness (of whom two said they had no special problems).
3.1. Survey location We compared groups — educated and uneducated, IDD and NIDD — in relation to the survey location ` (regional hospital or Espace Diabete). We sought to establish in what ways the groups were comparable and in what ways they differed. A certain number of common characteristics were observed (no significant difference: P . 0.05) for patients at both locations, regarding: • average age of patients: 53 years in the regional hospital (S.D. 17) and 56 years at the Espace ` Diabete; • average length of time of suffering from diabetes: 14 years in both locations; • type of diabetes (IDD or NIDD); • having a diabetic close relative; • replies concerning self-monitoring, the mode of injection and adaptation of doses in reply to the ‘‘what have you clearly understood?’’ question.
Overall, it is the management of their illness (mentioned 32 times) that seems to cause the greatest difficulty in understanding for patients. This stems mainly from the difficulty which IDD patients have in adapting their insulin dose (mentioned 13 times / 32), but also from difficulties experienced in in situ application of the knowledge acquired (mentioned 12 times / 32). Time constraints, self-monitoring and Table 2 Significant differences depending on survey location regarding the question ‘‘What have you clearly understood?’’ Education programme points
Illness Diet Foot care
Understood
P
Regional hospital
Espace ` Diabete
Frequency
%
Frequency
%
60 63 61
80 84 81
36 38 33
57 60 52
,0.0001 ,0.0001 ,0.0001
162
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164
insulin injections also appear difficult to manage (mentioned four times / 32). Patients’ problems in understanding also result from the complexity of the diabetic diet (mentioned 25 times), especially the difficulty in maintaining a balanced diet (mentioned 16 times / 25). This difficulty appears in a higher proportion for NIDD patients (10 / 24) than for IDD patients (15 / 73). In both cases (NIDD and IDD), the obstacles seem to result from an unsatisfactory integration of knowledge about diet, but also in application of knowledge acquired in practice (mentioned seven times / 25). Regarding knowledge of diabetes, patients felt they had difficulties in understanding regarding general acquisition of knowledge (mentioned 11 times / 17) and regarding identification of complications (mentioned six times / 17). Of the patients questioned, six perceived selfmonitoring as a not clearly understood practice. For one respondent it was a problem of manual skills, whereas for another it was a question of perception of the usefulness and purpose. For the others, the lack of comment prevented us from pinpointing the cause of difficulty. Was it a technical problem, one of understanding or the usefulness of the procedure or of constraint? While only a small number of patients expressed opinions on the difficulty of accepting and living with the illness (mentioned six times), their comments sometimes indicate distress: ‘‘how can I accept this illness?’’ or ‘‘the illness takes up too much space in my life’’. Regarding foot care, three patients (one IDD and two NIDD) felt that they did not know how to monitor. It should be noted that these were all patients who said that they had had education. Finally, hypoglycaemia (mentioned twice) seemed to pose few problems of understanding for patients and it is surprising to find that no difficulty regarding the appropriate course of action appears in the replies.
4. Discussion The presented study has limitations. The overall sample of patients surveyed is relatively small and therefore cannot be considered as representative of
the global population of diabetic patients in France. Moreover, the modalities of surveying were not the same for the national and local samples. In the first case, the questionnaire was completed by a member of the medical personnel during a telephone interview. In the second, patients completed the questionnaire themselves. However, the results of our study show that the groups are homogeneous, except for a significant difference in the number of patients educated. For this reason, our discussion is focused on learning difficulties amongst educated patients, regardless of their origin. Another limitation is that we have considered IDD and NIDD patient as a whole group, but we have also chosen to group IDD and NIDD patient responses with regard to knowledge and techniques which were common to them, and to differentiate the IDD patient responses for aspects specific to their self-treatment (insulin injection, adaptation of insulin doses). When patients educated about their diabetes (IDD and NIDD) were asked about the basic points of their education, 75% affirmed that they had clearly understood what was being taught. It therefore appears that the vast majority of them consider that they have acquired the major items of knowledge they need to manage their illness. However, it may be that what patients mean by ‘education’ is that they have received an adequate body of information about their illness, without actually acquiring real skills. In answering the question ‘‘what have you not yet understood in managing your illness?’’, we expected patients to voice their difficulties regarding points in the education programme which caused them the greatest difficulty, several authors having pointed out how difficult patient education may be given the varying degrees of patient motivation and learning abilities [6,8,11]. Sometimes, we observed the opposite phenomenon. Thus patients feel they have better understood diet and adaptation of insulin doses than foot care. However, they express themselves less on the difficulties encountered in carrying out the latter. It is true that our questionnaire had a limited number of items, which limits the possible interpretations. The last question (which was the only open one) doubtless gave patients greater freedom in answering. Globally, excluding the time constraints imposed by self-monitoring or insulin injections, patients
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164
encounter difficulty when they have to use their knowledge, whether it be to balance their diet or act when faced with a new situation. Regardless of age, they express this clearly in their comments: • ‘‘How can I apply what I have understood? ’’ (age 64); • ‘‘What is hard to understand is how to get one’ s diet to correspond to one’ s activity’’ (age 18); • ‘‘Diet is understood, but difficult in practice’’ (age 71); • ‘‘How can I adapt times for meals and for injections when I am going off for a fishing competition? ’’ (age 38); • ‘‘I have understood everything, in theory, but daily make up of doses is not easy as you never know what physical activity you will have three or four hours after the injections’’ (age 43). It can therefore be seen that patients are not always able to mobilize their knowledge in order to put it into practice. However, it is because the knowledge is wide and complex that it is difficult to acquire [7,10] and also because the patients often do not understand the meaning of medical terms used by the care providers during podology consultations, for example [12], or concerning diabetic retinopathy [13]. Indirectly, patients express their difficulties in organizing the knowledge received from carers. They are not able to establish links of cause and effect, the control of which will determine their future behaviour [6]. Thus, they may ask: • ‘‘How is it that an illness which does not cause pain can cause complications (eyes, legs arteries)? ’’, or • ‘‘Why does my hypoglycaemia happen before midday? In other cases, the lack or inadequacy of links can lead to the patient carrying out tasks as a matter of pure routine without understanding their actual usefulness, as shown by Beeney and Dunn [14]. This can rapidly lead to discouragement. Finally, while patients feel that they have clearly understood the techniques of self-monitoring and insulin injection, we have observed that in acquisi-
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tion of these practices there is no significant difference between educated and uneducated patients. This leads us to believe that we under-estimate patients’ ability to learn on their own.
5. Conclusion The study presented here addressed two groups of patients at the national and local levels. It attempted to identify their difficulties in understanding regarding the education they had received. It seems that there is not so much a problem with teaching methods but with the body of knowledge to be assimilated. The skills most difficult to obtain regarding diabetes correspond to areas of knowledge where amount and organization are the most complex. This concurs with recent research in cognitive psychology which indicates that complex knowledge must be able to fit into a patient’s prior knowledge system [6,7,10]. It appears important to us to reconsider the education of diabetic patients from the point of view of complexity of learning and, therefore, of objectives, teaching methods and the time required for education. Further studies therefore appear necessary to ascertain the learning difficulties which diabetic patients encounter during their education.
Acknowledgements The authors wish to express their thanks to the ` (Bayer Diagnostics nurses of the Espace Diabete Laboratories), to Doctor Bernard Cirette and to the nursing staff of the Diabetes–Endocrinology–Nutrition Unit of the Nevers Regional Hospital.
References [1] Miller LV, Goldstein J. More efficient care of diabetic patients in a country hospital setting. New Engl J Med 1972;286:1388–91. [2] Assal J, Ekoe JM, Lacroix A. L’enseignement aux malades ` therapeutique ´ sur la maladie et son traitement: un succes — ´ ´ un echec du corps medical (Education for subjects on their ´ de Diabetologie, ´ ˆ Dieu illness and treatment). Journees Hotel
164
[3]
[4]
[5]
[6]
[7]
C. Bonnet et al. / Patient Education and Counseling 42 (2001) 159 – 164 ´ Paris, Flammarion – Medecine – Sciences, Paris, 1984;193– 207. Davidson JK, editor, Clinical diabetes mellitus: a problem oriented approach, 2nd ed., New York: Theme Medical, 1991, pp. 341–53. 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, Rosquenvist 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. ´ d’Ivernois JF, Gagnayre R. Apprendre a` eduquer le patient ´ — approche pedagogique (Patient education), Paris: Vigot, 1995. Bonnet C, Gagnayre R, d’Ivernois JF. Learning difficulties of diabetic patients: a survey of educators. Patient Educ Couns 1998;35:139–47.
[8] Albano MG, Jacquemet S, Assal JPh. Patient education and diabetes research: a failure! Going beyond the empirical approaches. Acta Diabetol 1998;35:207–14. ´ [9] Grawitz M. Methodes des sciences sociales (Methods in Social Sciences), 10th ed., Paris: Dalloz, 1996. [10] Novak JD, Gowin DB. Learning how to learn, 2nd ed., Cambridge University Press, 1998. [11] Green LW. Theories and principles of health education applied to asthma. Chest 1994;106(4, suppl):219S–30S. [12] 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 1994;275–81. ´ [13] Aufseesser M, Lacroix A, Binyet S, Assal J. La retinopathie ´ ´ ´ diabetique — comprehension de certains termes medicaux par les patients (Diabetic vetinopathy). J Franc¸ais d’Ophtalmol 1995;18:27–32. [14] Beeney LJ, Dunn SM. Knowledge improvement and metabolic control in diabetes education: approaching the limits? Patient Educ Couns 1990;16:217–29.