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Children with diabetes mellitus: perception of their behavioural problems by parents and teachers
Early Human Development, 16 (1988) 245-252 Elsevier Scientific Publishers Ireland Ltd.
245
EHD 00856
Children with diabetes mellitus: perception of their behavioural problems by parents and teachers S. Courta, E. Seinb, C. McCowena, A.F. Hackett” and J.M. Parkin” ODepartment of Child Health and bNuffield Young Persons’ Unit of Child Psychiatry, University of Newcastle upon Tyne, U.K. Accepted for publication 28 March 1987
Summary The behaviour of 127 children with diabetes mellitus aged 8-16 years was assessed by their parents and teachers using a well established screening device and compared to that of 51 non-diabetic children. Twenty five per cent of the diabetics were perceived by their parents to be disturbed compared to only 14% of the controls. The proportion perceived to be disturbed by their teachers was similar in the two groups but more diabetics than controls were perceived by both parents and teachers to be disturbed. No relationship was found between the extent of the behaviour problems recorded and the control of the diabetes, as measured by glycosylated haemoglobin, the child’s age, the child’s age at diagnosis or the duration of the diabetes. However, the children with the younger parents at diagnosis tended to be perceived by their parents as having more behaviour problems, as were the diabetics from families facing the most social problems. The families more knowledgeable about diabetes were less likely to have disturbed children. diabetes mellitus; behavioural problems; knowledge; glycosylated haemoglobin
Introduction Children with chronic illness are at particular risk of developing psychiatric disturbance. Rutter et al. [9] found the prevalence of disturbance in such children amongst the general population of the Isle of Wight to be 14% compared to only 7% in their healthy peers. Studies of children with specific illnesses lead to similar conclusions e.g. epilepsy (53%) and diabetes (15%) [3,4]. One study of the 0 1988 Elsevier Scientific Publishers Ireland Ltd 0378-3782/88/$03.50 Published and Printed in Ireland
246
psychological well-being of newly diagnosed diabetics found severe problems in 36% but these were nearly all resolved within 9-12 months [5]. When the effects on lifestyle, the complex nature of the condition and the stricture that good control may mean fewer long term complications are considered it is perhaps not surprising that diabetic children have behavioural [l] and educational [2] problems. Some studies of children with diabetes however, have not found any overall increased prevalence of disturbance compared to non-diabetics [2] and the available information has been described as conflicting [3]. The role of diabetic control in particular appears to be two-edged; good control is difficult to achieve and has been observed to be associated with depressive symptoms in some children [l]; on the other hand poor control has been found to be associated with an increased prevalence of psychological disturbance [2] and in one study of adults anxiety, depression and quality of life improved as control changed for the better [6]. The aetiology of these problems is clearly complex and probably results from an interaction between physical, psychological, social, family and environmental factors. This paper describes the perceptions of the behaviour of a group of children with diabetes mellitus by their parents and teachers using a simple and readily available screening device. It also explores the relationship between these perceptions and the family’s knowledge and the control of the diabetes. Subjects and Methods Between July 1983 and March 1984 children attending diabetic clinics in Newcastle upon Tyne, Gateshead and Teesside were invited to take part in a detailed audit. The child and at least one parent were invited to a special clinic at which a structured questionnaire was used to obtain social information and a random blood sample was taken for estimation of glycosylated haemoglobin Al (HbAl) and c-peptide. The social information was scored with points being added for disadvantage in the following areas: the family’s ability to cope, stress within the family, the family structure, whether the father was employed and the suitability of the family’s accommodation, giving a score with a range from 0 to 5. A multiple choice questionnaire (MCQ) to assess knowledge about diabetes was completed by parents and children of 11 years and over [7]. As part of this audit each child’s behaviour was assessed using Rutter’s A2 scale completed by the parents and B2 scale by the child’s teacher [9]. The parent’s form consists of 31 questions relating to the child’s health e.g. frequency of headaches, habits e.g. sleeping difficulties and general demeanour e.g. worries. The respondent rates each of these as being either not applicable (score 0), applies somewhat (1) or certainly is applicable (2). The teacher’s form is similar but has only 26 questions, those about health and habits being omitted. The parents were allowed to take the forms home to complete and to return them at a second visit. The B2 forms were posted to the head teachers of the children’s schools with a request that they be completed by the teacher who knew the child best. The forms were then marked according to the instructions of Rutter et al. [9]. A total score of 13 or more on the parent’s scale or 9 or more on the teacher’s scale is suggestive of some disorder. Thus two independent assessments of the behaviour of each child were obtained.
241
For comparison, similar behavioural assessments were made of a group of healthy children also living in this area. These controls were recruited into a similar study of the psychological effects of neoplastic disease in childhood and were the children within the age range 8-16 years who were next in the family doctors’ registers to the children with neoplastic disease or diabetes. This study was approved by the appropriate local ethical committees. Results Two hundred and thirty four children were attending the diabetic clinics at the time of the study but 7 taking part in another study and 2 with severe psychological problems were not invited to take part. The study was completed by 170 families (75.5% of those asked) but only 127 of the children were within the age range 8-16 years to which the Rutter scales refer and returned a usable A2 or B2 form. The remainder of this paper concerns only these children. The age distribution of the children in this study is shown in Table I together with some clinical details of the diabetic children. The large variation in both the degree of control (HbAl) and the duration of the diabetes can be seen. The number of children whose parents’ assessments suggested a problem are shown in Table II with the corresponding number of control children. A problem was perceived in 25.1% of the diabetic children compared to 13.7% of the controls, the difference being of borderline statistical significance. Table II also shows comparable data for the teachers’ assessments with 9.8% of the diabetics being perceived as having a problem compared to 5.3% of the controls but these proportions were not statistially different. Of the 119 diabetics for whom both A2 and B2 assessments were available 82 were judged to have no problem on either scale, 31 to have a problem on the A2 or the B2 scale and 6 (5%) to have a problem on both scales. Such data were available
TABLE I Age and sex distribution of subjects and some clinical details of the diabetics. Means are shown with 1 S.D. Age (years)
Total
8-10
lo-12
12-14
14-16
12.2 * 2.00
Diabetics Boys Girls
12 9
23 14
19 19
14 17
68 59
Duration of diabetes (years) S.D. HbAl (“IO) S.D.
3.0 2.06 10.4 2.78
3.0 2.34 10.3 1.83
5.2 3.20 11.3 2.40
5.3 3.24 11.4 2.52
4.5 2.92 10.9 2.37
10 3
12.3 + 2.22 28 23
Control
Boys Girls
4 5
6 6
8 9
248
TABLE II Number of diabetics and controls judged by their parents or teachers to be disturbed. *x2 P < 0.10, > 0.05; ?? *xzp> 0.10. Parents assessments*
Teachers assessments**
No problem
Problem
No problem
Problem
Diabetics
92
32
110
12
Controls
44
7
36
2
for only 38 controls of whom 30 were judged to have no problem, 8 a problem according to parents or teachers and none a problem according to both. A x2 analysis indicated that this distribution was statistically significant (P < 0.05), the diabetics being more likely to be judged to have problems by both parents and teachers. Two of the 6 diabetic children judged both by their parents and teachers to be disturbed had HbAl levels below lo%, two had levels between 10 and 12% and two over 12%. There were no significant Pearson’s r correlation coefficients between either the A2 or B2 scores and HbAl, duration of diabetes, child’s age or child’s age at diagnosis. However a significant, but low, partial correlation was found between the A2 score and the age of the parents at diagnosis even when controlled for the age of the child at diagnosis and duration of the diabetes (Mother r = - 0.29, P < 0.05; i.e. the younger the parent at the time of diagnosis Father r = - 0.21, P < 0.05); the greater the perceived behavioural problem of their child. There was also a relationship between the A2 score and the score of social disadvantage (Table III) showing that increased problems in the family were associated with increased prevalence of behavioural problems. There was a negative correlation between knowledge of diabetes as assessed by MCQ score and the A2 scores (Child r = - 0.27, n = 88, P < 0.01; mother r = -0.20, n = 112, P < 0.05; father r = - 0.48, n = 44, P < O.Ol), the higher the MCQ score the less evidence of disturbance. There was also a relationship between MCQ score and control (HbAl) with better knowledge being associated with better control [7]. TABLE III Number of social problems faced by the families in relation to the parents’ assessment of their child’s behaviour. *x2P< 0.01. Social score*
Rutter A2 scale
Number of problems
No problem
Problem
0 l-2 3-5
28 50 13
2 18 10
Frequency of response (%)
50 40 30 -
lo-
20 -
Elements: A
B
01
C
02
3
D
4
Health problems
2
Behaviour
1
\a
Frequency of response 1%) 50 40 I 30 -I
::: Elements:
E
5
F
6
G
Ii
8
---
I
III
IV
V
Diabetic children Controls
II
Diabetic children Controls
Habits
___
-
9
10 l:-
12
13
1
2
3 Behaviour
14
15 16
4
A
17
5
18
6
19
ii~A~q&_/$
A ! ‘\ 7
7
20
8
9
21 22
11
26
13 14
12
10
24 25
t 23
15
16
17
18
children. The labelling is taken from the B2 forms: 6, not
Fig. 1. Frequency of responses to individual elements of the A2 scale for diabetic and non-diabetic children. The labelling is taken from the A2 form: D, wets the bed; V, sleeping difficulty; 6, often worried; 8, irritable; 9, miserable; 12, bites nails; 13, disobedient; 15, fearful. Fig. 2. Frequency of responses to individual elements of the B2 scale for diabetic and non-diabetic liked; 9, irritable; 10, miserable; 17, fearful.
g \o
250 TABLE IV Frequency of responses to some selected individual elements of the parents and teachers scales. All P values are basedon x2 analysis. NS, P > 0.05. Element
Controls
Diabetics
Not applicable
Applicable
Not applicable
P Applicable -
Worries 6 I
A2 B2
36 25
15 13
51 15
67 45
< 0.01 NS
Irritable 8 9
A2 B2
32 37
19 1
52 107
12 16
< 0.05 < 0.05
Mkerable 9 10
A2 B2
42 36
9 2
80 %
44 27
< 0.05 < 0.05
Dkobedient 13 I5
A2 B2
35 33
16 5
61 110
62 I3
< 0.05 NS
Fearful 15 17
A2 B2
31 32
14 6
15 83
49 40
NS < 0.05
More mothers (25%) than fathers (9010) of the diabetic children admitted to having seen their family doctors about their nerves during the 2 years prior to the interview (x’ 11.03, P < 0.01). Furthermore those children with behavioural problems according to their parents were more likely to have mothers who had seen their family doctors about their nerves (n = 14 out of 32) than those not judged to be disturbed (n = 17 out of 92, x2 8.09, P< 0.01). This was not true of their fathers nor in relation to the teachers’ assessments. Although figures were not kept, most children attended the audit with their mothers only and most of the A2 assessments appeared to have been completed by the mothers. The frequency of the responses to the individual elements of the A2 and B2 scales for the diabetics and non-diabetics are shown in Figs. 1 and 2, respectively. The profiles are remarkably similar and the few apparent differences are indicated in Table IV. This shows that more diabetics were perceived by both their parents and teachers to be irritable and miserable, and in addition more diabetics were viewed by their parents to worry and to be disobedient. The teachers alone assessed more diabetics to be fearful. Discussion The very high prevalence of disturbance perceived by the parents of the diabetic children is cause for great concern. This is especially so since several of the families
251
who declined to take part were known to have disturbed children and two severely disturbed children were excluded. It is unlikely therefore that the prevalence of disturbance amongst all diabetic children in these clinics is lower than that revealed here and the proportion is similar to the 28% reported previously [l] . These authors however, had no control group and quoted Rutter al. [9], 7% of whose controls were disturbed compared with 14% of ours. The explanation for this may be that the study of Rutter et al. is more than 20 years old and was in a different area of the country. The fact that so many parents judged their children to show disturbed behaviour may actually give insight into the anxieties of the parents rather than the behaviour of their children. This suggestion is supported by the observation that the mothers who had seen their family doctors about their own psychological problems more commonly perceived their children to be disturbed while there was no such relationship with the teachers’ assessments. Although no control data were available the large proporiton of mothers seeking help may reflect the strain of coping with diabetes as has been previously observed [IO]. It is perhaps also relevant that the age of the parents at the time of diagnosis and the number of social problems faced by the parents were related to this perceived behaviour. These points can only be resolved by a further more detailed study of the psychologi.cal well-being of parents and children. Nevertheless the proportion of diabetics judged by both parents and teachers to be disturbed was higher than that for the controls which suggests a genuine increase in disturbance amongst the diabetics. Duration of the disease was not related to the perception of problems i.e. behaviour problems were not confined to those more recently diagnosed nor to those who had had the condition for several years. This suggests the need for constant vigilance if problems are to be recognised. Since improved knowledge may be one accessible route to better control [7,8], it was encouraging that those families with better knowledge perceived fewer problems. There is no evidence therefore that improving knowledge about diabetes amongst the patients and their families causes anxiety. However it is of interest that while knowledge about diabetes was related to both less disturbance and better control [7], no relationship was found between control and disturbance. Perhaps this may also indicate that it is the perception of the problems, especially by the parents, which is at fault. In 1980 Gath et al. [2] reported that teachers viewed 20% of diabetics as being disturbed, in 1984 Hoare [3] reported a figure of 14% whilst in this study carried out in 1983-84 gave a figure of 10%. The controls of Gath et al. also had a higher prevalence (13%) than the 6% of Hoare or 5% in the present study. The improvement amongst the diabetics may reflect increased understanding by teachers through better contacts with doctors, dietitians and liason health visitors and the work of the British Diabetic Association which has widely disseminated a pack of information specifically designed for schools. Rutter’s questionnaire was designed primarily as a screening device and we appreciate that its individual elements are not well validated. Nevertheless, the responses to the individual elements may highlight areas of particular concern to parents and teachers and the similarity in the profiles gives no support to the notion of there being a diabetic personality Diabetics were judged to be more miserable
252
and irritable than their peers and most were judged by their parents to worry excessively. Disobedience too was regarded as a problem in the home which might be due to the extra rules imposed together with the anxieties of the parents about the consequences of them being broken. Clearly the ideal of the family following a normal life after diagnosis is not supported by these data. This study has demonstrated that the prevalence of disturbance amongst diabetic children may be much higher than is clinically apparent. Since disturbance was not related to control, the children with problems need to be identified by some other means. The presence of a psychiatrist or psychologist as part of the team at the clinic may help identify those individuals and families at risk and help them to come to terms with the diagnosis of diabetes and its management. Acknowledgement We are pleased to acknowledge the interest and assistance given by the parents, children, teachers and our colleagues who allowed their patients to be included in this study: Dr. F. Alexander, Dr. J. Angus, Dr. D. Carr, Dr. R.C. Dias, Dr. I.H. Grant, Dr. W.F. Kelly, Dr. P. Kenna, Dr. M. 00 and Dr. G.P. Wyatt. Some of the blood samples and information was collected for us by Dr. G. Lawson, Dr. H. Coleman and Sister A. Stephenson. References
4 5
6 I
Close, H., Davies, A.G., Price, D.A. and Goodyer, I.M. (1986): Emotional difficulties in diabetes mellitus. Arch. Dis. Child., 61.337-340. Gath, A., Smith, A. and Baum, D. (1980): Emotional, behavioural and educational disorders in diabetic children. Arch. Dis. Child., 55,371-375. Hoare, P. (1984): The development of psychiatric disorder among schoolchildren with epilepsy. Dev. Med. ChildNeurol., 26,3-13. Hoare, P. (1984): Psychiatric disturbance in the families of epileptic children. Dev. Med. Child Neurol., 26, 14-19. Kovacs, M., Feinberg, T.L., Paulauskas, S., Finkelstein, R., Pollack, M. and Crouse-Novak, M. (1985): Initial coping responses and psychological characteristics of children with insulin dependent diabetes mellitus. J. Pediatr., 106,827-834. Mazze, RX, Lucido, D. and Shamoon, H. (1984): Psychological and social correlates of glycaemic control. Diab. Care, 7,360-366. McCowen, C., Hackett, A.F., Court, S. and Parkin, J.M. (1986): Are families of diabetic children adequately taught? Br. Med. J., 292,136l. McCulloch, D.K.. Mitchell, R.D., Ambler, J. and Tattersall, R.B. (1983): Influence of imaginative teaching of diet on compliance and metabolic control in insulin dependent diabetes. Br. Med. J., 287,1858-1861. Rutter, M., Tizzard, J. and Whitmore, K. (Editors) (1970): In: Education, Health and Behaviour. Longmans, London. Sterky, G. (1963): Family background and state of mental health in a group of diabetic schoolchildren. Acta Pediatr., 52,377-390.
245
EHD 00856
Children with diabetes mellitus: perception of their behavioural problems by parents and teachers S. Courta, E. Seinb, C. McCowena, A.F. Hackett” and J.M. Parkin” ODepartment of Child Health and bNuffield Young Persons’ Unit of Child Psychiatry, University of Newcastle upon Tyne, U.K. Accepted for publication 28 March 1987
Summary The behaviour of 127 children with diabetes mellitus aged 8-16 years was assessed by their parents and teachers using a well established screening device and compared to that of 51 non-diabetic children. Twenty five per cent of the diabetics were perceived by their parents to be disturbed compared to only 14% of the controls. The proportion perceived to be disturbed by their teachers was similar in the two groups but more diabetics than controls were perceived by both parents and teachers to be disturbed. No relationship was found between the extent of the behaviour problems recorded and the control of the diabetes, as measured by glycosylated haemoglobin, the child’s age, the child’s age at diagnosis or the duration of the diabetes. However, the children with the younger parents at diagnosis tended to be perceived by their parents as having more behaviour problems, as were the diabetics from families facing the most social problems. The families more knowledgeable about diabetes were less likely to have disturbed children. diabetes mellitus; behavioural problems; knowledge; glycosylated haemoglobin
Introduction Children with chronic illness are at particular risk of developing psychiatric disturbance. Rutter et al. [9] found the prevalence of disturbance in such children amongst the general population of the Isle of Wight to be 14% compared to only 7% in their healthy peers. Studies of children with specific illnesses lead to similar conclusions e.g. epilepsy (53%) and diabetes (15%) [3,4]. One study of the 0 1988 Elsevier Scientific Publishers Ireland Ltd 0378-3782/88/$03.50 Published and Printed in Ireland
246
psychological well-being of newly diagnosed diabetics found severe problems in 36% but these were nearly all resolved within 9-12 months [5]. When the effects on lifestyle, the complex nature of the condition and the stricture that good control may mean fewer long term complications are considered it is perhaps not surprising that diabetic children have behavioural [l] and educational [2] problems. Some studies of children with diabetes however, have not found any overall increased prevalence of disturbance compared to non-diabetics [2] and the available information has been described as conflicting [3]. The role of diabetic control in particular appears to be two-edged; good control is difficult to achieve and has been observed to be associated with depressive symptoms in some children [l]; on the other hand poor control has been found to be associated with an increased prevalence of psychological disturbance [2] and in one study of adults anxiety, depression and quality of life improved as control changed for the better [6]. The aetiology of these problems is clearly complex and probably results from an interaction between physical, psychological, social, family and environmental factors. This paper describes the perceptions of the behaviour of a group of children with diabetes mellitus by their parents and teachers using a simple and readily available screening device. It also explores the relationship between these perceptions and the family’s knowledge and the control of the diabetes. Subjects and Methods Between July 1983 and March 1984 children attending diabetic clinics in Newcastle upon Tyne, Gateshead and Teesside were invited to take part in a detailed audit. The child and at least one parent were invited to a special clinic at which a structured questionnaire was used to obtain social information and a random blood sample was taken for estimation of glycosylated haemoglobin Al (HbAl) and c-peptide. The social information was scored with points being added for disadvantage in the following areas: the family’s ability to cope, stress within the family, the family structure, whether the father was employed and the suitability of the family’s accommodation, giving a score with a range from 0 to 5. A multiple choice questionnaire (MCQ) to assess knowledge about diabetes was completed by parents and children of 11 years and over [7]. As part of this audit each child’s behaviour was assessed using Rutter’s A2 scale completed by the parents and B2 scale by the child’s teacher [9]. The parent’s form consists of 31 questions relating to the child’s health e.g. frequency of headaches, habits e.g. sleeping difficulties and general demeanour e.g. worries. The respondent rates each of these as being either not applicable (score 0), applies somewhat (1) or certainly is applicable (2). The teacher’s form is similar but has only 26 questions, those about health and habits being omitted. The parents were allowed to take the forms home to complete and to return them at a second visit. The B2 forms were posted to the head teachers of the children’s schools with a request that they be completed by the teacher who knew the child best. The forms were then marked according to the instructions of Rutter et al. [9]. A total score of 13 or more on the parent’s scale or 9 or more on the teacher’s scale is suggestive of some disorder. Thus two independent assessments of the behaviour of each child were obtained.
241
For comparison, similar behavioural assessments were made of a group of healthy children also living in this area. These controls were recruited into a similar study of the psychological effects of neoplastic disease in childhood and were the children within the age range 8-16 years who were next in the family doctors’ registers to the children with neoplastic disease or diabetes. This study was approved by the appropriate local ethical committees. Results Two hundred and thirty four children were attending the diabetic clinics at the time of the study but 7 taking part in another study and 2 with severe psychological problems were not invited to take part. The study was completed by 170 families (75.5% of those asked) but only 127 of the children were within the age range 8-16 years to which the Rutter scales refer and returned a usable A2 or B2 form. The remainder of this paper concerns only these children. The age distribution of the children in this study is shown in Table I together with some clinical details of the diabetic children. The large variation in both the degree of control (HbAl) and the duration of the diabetes can be seen. The number of children whose parents’ assessments suggested a problem are shown in Table II with the corresponding number of control children. A problem was perceived in 25.1% of the diabetic children compared to 13.7% of the controls, the difference being of borderline statistical significance. Table II also shows comparable data for the teachers’ assessments with 9.8% of the diabetics being perceived as having a problem compared to 5.3% of the controls but these proportions were not statistially different. Of the 119 diabetics for whom both A2 and B2 assessments were available 82 were judged to have no problem on either scale, 31 to have a problem on the A2 or the B2 scale and 6 (5%) to have a problem on both scales. Such data were available
TABLE I Age and sex distribution of subjects and some clinical details of the diabetics. Means are shown with 1 S.D. Age (years)
Total
8-10
lo-12
12-14
14-16
12.2 * 2.00
Diabetics Boys Girls
12 9
23 14
19 19
14 17
68 59
Duration of diabetes (years) S.D. HbAl (“IO) S.D.
3.0 2.06 10.4 2.78
3.0 2.34 10.3 1.83
5.2 3.20 11.3 2.40
5.3 3.24 11.4 2.52
4.5 2.92 10.9 2.37
10 3
12.3 + 2.22 28 23
Control
Boys Girls
4 5
6 6
8 9
248
TABLE II Number of diabetics and controls judged by their parents or teachers to be disturbed. *x2 P < 0.10, > 0.05; ?? *xzp> 0.10. Parents assessments*
Teachers assessments**
No problem
Problem
No problem
Problem
Diabetics
92
32
110
12
Controls
44
7
36
2
for only 38 controls of whom 30 were judged to have no problem, 8 a problem according to parents or teachers and none a problem according to both. A x2 analysis indicated that this distribution was statistically significant (P < 0.05), the diabetics being more likely to be judged to have problems by both parents and teachers. Two of the 6 diabetic children judged both by their parents and teachers to be disturbed had HbAl levels below lo%, two had levels between 10 and 12% and two over 12%. There were no significant Pearson’s r correlation coefficients between either the A2 or B2 scores and HbAl, duration of diabetes, child’s age or child’s age at diagnosis. However a significant, but low, partial correlation was found between the A2 score and the age of the parents at diagnosis even when controlled for the age of the child at diagnosis and duration of the diabetes (Mother r = - 0.29, P < 0.05; i.e. the younger the parent at the time of diagnosis Father r = - 0.21, P < 0.05); the greater the perceived behavioural problem of their child. There was also a relationship between the A2 score and the score of social disadvantage (Table III) showing that increased problems in the family were associated with increased prevalence of behavioural problems. There was a negative correlation between knowledge of diabetes as assessed by MCQ score and the A2 scores (Child r = - 0.27, n = 88, P < 0.01; mother r = -0.20, n = 112, P < 0.05; father r = - 0.48, n = 44, P < O.Ol), the higher the MCQ score the less evidence of disturbance. There was also a relationship between MCQ score and control (HbAl) with better knowledge being associated with better control [7]. TABLE III Number of social problems faced by the families in relation to the parents’ assessment of their child’s behaviour. *x2P< 0.01. Social score*
Rutter A2 scale
Number of problems
No problem
Problem
0 l-2 3-5
28 50 13
2 18 10
Frequency of response (%)
50 40 30 -
lo-
20 -
Elements: A
B
01
C
02
3
D
4
Health problems
2
Behaviour
1
\a
Frequency of response 1%) 50 40 I 30 -I
::: Elements:
E
5
F
6
G
Ii
8
---
I
III
IV
V
Diabetic children Controls
II
Diabetic children Controls
Habits
___
-
9
10 l:-
12
13
1
2
3 Behaviour
14
15 16
4
A
17
5
18
6
19
ii~A~q&_/$
A ! ‘\ 7
7
20
8
9
21 22
11
26
13 14
12
10
24 25
t 23
15
16
17
18
children. The labelling is taken from the B2 forms: 6, not
Fig. 1. Frequency of responses to individual elements of the A2 scale for diabetic and non-diabetic children. The labelling is taken from the A2 form: D, wets the bed; V, sleeping difficulty; 6, often worried; 8, irritable; 9, miserable; 12, bites nails; 13, disobedient; 15, fearful. Fig. 2. Frequency of responses to individual elements of the B2 scale for diabetic and non-diabetic liked; 9, irritable; 10, miserable; 17, fearful.
g \o
250 TABLE IV Frequency of responses to some selected individual elements of the parents and teachers scales. All P values are basedon x2 analysis. NS, P > 0.05. Element
Controls
Diabetics
Not applicable
Applicable
Not applicable
P Applicable -
Worries 6 I
A2 B2
36 25
15 13
51 15
67 45
< 0.01 NS
Irritable 8 9
A2 B2
32 37
19 1
52 107
12 16
< 0.05 < 0.05
Mkerable 9 10
A2 B2
42 36
9 2
80 %
44 27
< 0.05 < 0.05
Dkobedient 13 I5
A2 B2
35 33
16 5
61 110
62 I3
< 0.05 NS
Fearful 15 17
A2 B2
31 32
14 6
15 83
49 40
NS < 0.05
More mothers (25%) than fathers (9010) of the diabetic children admitted to having seen their family doctors about their nerves during the 2 years prior to the interview (x’ 11.03, P < 0.01). Furthermore those children with behavioural problems according to their parents were more likely to have mothers who had seen their family doctors about their nerves (n = 14 out of 32) than those not judged to be disturbed (n = 17 out of 92, x2 8.09, P< 0.01). This was not true of their fathers nor in relation to the teachers’ assessments. Although figures were not kept, most children attended the audit with their mothers only and most of the A2 assessments appeared to have been completed by the mothers. The frequency of the responses to the individual elements of the A2 and B2 scales for the diabetics and non-diabetics are shown in Figs. 1 and 2, respectively. The profiles are remarkably similar and the few apparent differences are indicated in Table IV. This shows that more diabetics were perceived by both their parents and teachers to be irritable and miserable, and in addition more diabetics were viewed by their parents to worry and to be disobedient. The teachers alone assessed more diabetics to be fearful. Discussion The very high prevalence of disturbance perceived by the parents of the diabetic children is cause for great concern. This is especially so since several of the families
251
who declined to take part were known to have disturbed children and two severely disturbed children were excluded. It is unlikely therefore that the prevalence of disturbance amongst all diabetic children in these clinics is lower than that revealed here and the proportion is similar to the 28% reported previously [l] . These authors however, had no control group and quoted Rutter al. [9], 7% of whose controls were disturbed compared with 14% of ours. The explanation for this may be that the study of Rutter et al. is more than 20 years old and was in a different area of the country. The fact that so many parents judged their children to show disturbed behaviour may actually give insight into the anxieties of the parents rather than the behaviour of their children. This suggestion is supported by the observation that the mothers who had seen their family doctors about their own psychological problems more commonly perceived their children to be disturbed while there was no such relationship with the teachers’ assessments. Although no control data were available the large proporiton of mothers seeking help may reflect the strain of coping with diabetes as has been previously observed [IO]. It is perhaps also relevant that the age of the parents at the time of diagnosis and the number of social problems faced by the parents were related to this perceived behaviour. These points can only be resolved by a further more detailed study of the psychologi.cal well-being of parents and children. Nevertheless the proportion of diabetics judged by both parents and teachers to be disturbed was higher than that for the controls which suggests a genuine increase in disturbance amongst the diabetics. Duration of the disease was not related to the perception of problems i.e. behaviour problems were not confined to those more recently diagnosed nor to those who had had the condition for several years. This suggests the need for constant vigilance if problems are to be recognised. Since improved knowledge may be one accessible route to better control [7,8], it was encouraging that those families with better knowledge perceived fewer problems. There is no evidence therefore that improving knowledge about diabetes amongst the patients and their families causes anxiety. However it is of interest that while knowledge about diabetes was related to both less disturbance and better control [7], no relationship was found between control and disturbance. Perhaps this may also indicate that it is the perception of the problems, especially by the parents, which is at fault. In 1980 Gath et al. [2] reported that teachers viewed 20% of diabetics as being disturbed, in 1984 Hoare [3] reported a figure of 14% whilst in this study carried out in 1983-84 gave a figure of 10%. The controls of Gath et al. also had a higher prevalence (13%) than the 6% of Hoare or 5% in the present study. The improvement amongst the diabetics may reflect increased understanding by teachers through better contacts with doctors, dietitians and liason health visitors and the work of the British Diabetic Association which has widely disseminated a pack of information specifically designed for schools. Rutter’s questionnaire was designed primarily as a screening device and we appreciate that its individual elements are not well validated. Nevertheless, the responses to the individual elements may highlight areas of particular concern to parents and teachers and the similarity in the profiles gives no support to the notion of there being a diabetic personality Diabetics were judged to be more miserable
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and irritable than their peers and most were judged by their parents to worry excessively. Disobedience too was regarded as a problem in the home which might be due to the extra rules imposed together with the anxieties of the parents about the consequences of them being broken. Clearly the ideal of the family following a normal life after diagnosis is not supported by these data. This study has demonstrated that the prevalence of disturbance amongst diabetic children may be much higher than is clinically apparent. Since disturbance was not related to control, the children with problems need to be identified by some other means. The presence of a psychiatrist or psychologist as part of the team at the clinic may help identify those individuals and families at risk and help them to come to terms with the diagnosis of diabetes and its management. Acknowledgement We are pleased to acknowledge the interest and assistance given by the parents, children, teachers and our colleagues who allowed their patients to be included in this study: Dr. F. Alexander, Dr. J. Angus, Dr. D. Carr, Dr. R.C. Dias, Dr. I.H. Grant, Dr. W.F. Kelly, Dr. P. Kenna, Dr. M. 00 and Dr. G.P. Wyatt. Some of the blood samples and information was collected for us by Dr. G. Lawson, Dr. H. Coleman and Sister A. Stephenson. References
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Close, H., Davies, A.G., Price, D.A. and Goodyer, I.M. (1986): Emotional difficulties in diabetes mellitus. Arch. Dis. Child., 61.337-340. Gath, A., Smith, A. and Baum, D. (1980): Emotional, behavioural and educational disorders in diabetic children. Arch. Dis. Child., 55,371-375. Hoare, P. (1984): The development of psychiatric disorder among schoolchildren with epilepsy. Dev. Med. ChildNeurol., 26,3-13. Hoare, P. (1984): Psychiatric disturbance in the families of epileptic children. Dev. Med. Child Neurol., 26, 14-19. Kovacs, M., Feinberg, T.L., Paulauskas, S., Finkelstein, R., Pollack, M. and Crouse-Novak, M. (1985): Initial coping responses and psychological characteristics of children with insulin dependent diabetes mellitus. J. Pediatr., 106,827-834. Mazze, RX, Lucido, D. and Shamoon, H. (1984): Psychological and social correlates of glycaemic control. Diab. Care, 7,360-366. McCowen, C., Hackett, A.F., Court, S. and Parkin, J.M. (1986): Are families of diabetic children adequately taught? Br. Med. J., 292,136l. McCulloch, D.K.. Mitchell, R.D., Ambler, J. and Tattersall, R.B. (1983): Influence of imaginative teaching of diet on compliance and metabolic control in insulin dependent diabetes. Br. Med. J., 287,1858-1861. Rutter, M., Tizzard, J. and Whitmore, K. (Editors) (1970): In: Education, Health and Behaviour. Longmans, London. Sterky, G. (1963): Family background and state of mental health in a group of diabetic schoolchildren. Acta Pediatr., 52,377-390.