Support for families with diabetic children: Parents' views

Original Articles

Support for families with diabetic children: parents’ views

A H Challen MB ChB MRCP Research Fellow, Department of Child Health, University of Bristol Present post: Paediatric Registrac Southmead Hospital, Bristol

A G Davies MB BS MRCP MD Lecturer in Child Health, University of Bristol Present post: Medical Advisor in Clinical Research, Novo Laboratories

R J W Williams MB ChB DPM MRCPsych Consultant Child and Adolescent Psychiatrist, Royal Hospital for Sick Children, Bristol

J D Baum M A MSc MD FRCP DCH Professor of Child Health, University of Bristol

Correspondence: Dr A H Challen, Paediatric Registrar, Southmead Hospital, Westbury-on-Trym, Bristol BS10 5NB

Abstract Parents of 86 children (aged 10-17 years) with diabetes, were asked about the support they had received since their child’s diagnosis. The major source of support cited was from hospital paediatricians and diabetes health visitors.

Sixty-six per cent of parents felt they had received sufficient support. In comparison, the 34% of parents who were unsatisfied with support services, had a less cohesive family environment (p<0.05); their children had diabetes of

longer duration (p=O.Ol) and were younger at diagnosis (p<0.05). The unsatisfied group were less likely to have had contact with a diabetes health visitor (~(0.05). There were no differences between the two groups in socio-

economic status or their children’s age, sex or psychological function. Parents’ suggestions for improving services included easy access to

professionals, and consistency of advice. The results of this study have potential implications for the delivery of medical

care for children with diabetes.

Introduction The diagnosis of diabetes in a child is a

traumatic event in a family’s life requir- ing significant adjustments to daily life- style (Ref I ) . Even after parents come to terms with their child’s diabetes, a high degree of supervision and involvement is required which may stretch the resources of even the most capable families.

It is widely recognised (Refs 2-4) that parents with diabetic children need support in terms of advice, encouragement and opportunities to discuss problems. However we are unaware of any research evaluating the support services provided. This study forms part of a com- prehensive psychological survey of young people with diabetes, and investi- gates the views of parents about the support received from hospital and community personnel and the factors that affected their perceptions.

Materials and methods Patient selection

The parents of all young people born between 1 January 1970 and 1 June 1976,

attending one of three paediatric diabetes clinics and living within the county of Avon, were approached for the study. Two families were excluded as the diabetic child had another serious chronic disorder (Friederichs Ataxia and Spina Bifida). The remaining families were contacted by letter and telephone to request their participation in the study. Approval for the study was obtained from the district ethical committees.

Interview procedure

The parents were all interviewed by one research doctor [AHC] (who was not involved with the clinical management of the children or directly con- nected with the clinics) using a stan- dardised semi-structured interview schedule developed following a separate pilot study. Wherever possible the inter- views were carried out in the family home, or if this was not convenient, at the Children’s Hospital. Both parents were interviewed if possible and their consensus view was recorded. Failing this, the parent claiming the ‘major

responsibility’ for the child’s diabetes was interviewed. Parents were assured that individual results were confidential.

During the course of the interview, the parents were read a list of hospital and community personnel, and were asked to comment in relation to each:

(1) whether they had been in contact with the parents concerning their child’s diabetes;

(2) whether they had provided any help and support;

(3) and whether they had been a major provider of help and support.

They were then asked to decide whether they had or had not received sufficient help and support during the course of their child’s diabetes (ie both initially at diagnosis and subsequently). Finally they were asked for suggestions for the improvement of support services for families with diabetic children.

After the interview parents were asked to complete the shortened version of the Moos Family Environment Scale (Ref 5). Social class (non-manual/ manual) for each family was determined using Office of Population Censuses and Surveys classification, based on fathers’ occupation or mothers’ if there was no father in the family.

The young peoples’ psychological function was assessed during the home visit with three pen and paper tests: the Birleson Self-rating Depression Scale (Ref 6); the Revised Measure of Child- ren’s Manifest Anxiety (Ref 7); and the Piers Harris Children’s Self Concept Scale (Ref 8). Their glycaemic control was assessed by their mean glycated haemoglobin (HbA,) taken routinely at clinic visits, over the six months before and after the interview (seeAppendix 1).

26 Practical Diabetes]anuary/February 1990 Vol7 No 1

Original Articles Support for families with diabetic children: parents’ views

Glyca ted haemoglobin measurement

The H b A , were analysed using the Corning agar gel electrophoretic method (Ref 9) in one of three laboratories (de- pending on which clinic they attended). The normal range of laboratory 1 and 2 is 4.5-7.5% and results are known to be equivalent as frequent quality control checks are routinely performed. The normal range of laboratory 3 is 4.5-6.5%. It was demonstrated that results from laboratory 3 could be adjusted by a correction factor so as to be strictly comparable with the other two (see Appendix 2).

Analysis and statistical methods Parents who were satisfied with sup-

port services were compared with the unsatisfied group to evaluate if there were any differences in demographic and psychological variables and glycaemic control. The statistical methods used in data analysis were the Mann-Whitney U test, Chi-Squared or Fisher exact proba- bility test and multiple regression analysis.

Resu I ts Demographic data

The parents of 86 young people with diabetes (out of a possible 103) took part in the survey. The reasons for non- participation were as follows: parents were not acting guardians (n=2), we were unable to contact parents (n=3) and the families (parent and/or diabetic child) chose not to participate (n=12). In 40 cases both parents were seen, in 41 cases only the mother and in 5 cases only the father was seen. In 11 (13%) cases the young people came from single parent families. The socio-economic status of the families was as follows: non- manual 47%; manual 48%; 5% neither parent employed.

The young people (38 boys, 48 girls) had a median age of 14.1 (range 10.5-17) years and median duration of diabetes of 4.4 (range 0.3-14.7) years. In all but four cases they completed the Birleson and Manifest Anxiety scales and 78 young people correctly completed the Piers Harris scale.

Support from hospital and community personnel

Table 1 shows parents’ views on the support they have received from hospital and community personnel. Excepting school doctors and nurses, and other parents of diabetic children, over three quarters of the sample had been in contact with the listed personnel. The major- ity of parents had received support from personnel they had had contact with, although school teachers were the least

Table 1 Parents’ perception of contact and support received from hospital and

community staff

In contact Provided help Majorprovider of with andsupport of help andsupport

Paedia trician Hospital nursing staff Hospital dietitian Diabetes health visitor General practitioner School teachers School doctor Schoolnurse British Diabetic Association Family Friends Parent of diabetic child

100% 700% 95% 93% 94% 83 Yo 78% 58% 78% 56% 94% 58% 34% 23% 70% 57%

84% 71 % 86% 73 % 39% 34%

89% 64%

74% 71% 13% 31% 16% 0% 0% 0%

75% 7 %

4% 4%

likely to provide support. The paediatrician was by far the most frequently quoted major source of support; the diabetes health visitor was also frequently cited.

Parents suggestions for improving services

Table 2 shows parents’ suggestions for improving support services to families with diabetic children. Many parents commented on particular problems they had met or aspects of the service they had found particularly helpful; these comments have also been included.

Sufficiency of support services Sixty-six percent of parents felt that

overall they had received sufficient support. In comparison to this group, the children of parents who perceived insufficient support were more likely to have a longer duration of diabetes (median 6.3 versus 3.0 years, p=O.O1) and to have been younger at diagnosis (median 9.0 versus 10.8 years, pt0.05). As age at diagnosis and duration of diabetes were closely related (r=-.86), a multiple regression analysis was under- taken with perceived sufficiency of support as the dependent variable. Neither duration of diabetes or age at diagnosis was significantly related to perceived sufficiency of support, when the other variable was controlled for, although duration of diabetes explained more of the variance (Table3 nextpage).

The children of parents who perceived insufficient support were also more likely to have a higher mean glycated haemoglobin value in the six months prior to interview (median 12.4% versus lo.%, p<0.05). However this relationship was not significant if the effect of duration of diabetes was statistically controlled for (Table 4 followingpages). There was no difference in glycaemic control six months after the interview (median

11.7% versus 12.2%, n.s.). The Moos scale was completed by all

parents although one father’s questionnaire was incomplete and therefore dis- regarded. Of the ten areas of the family environment identified by the Moos scale, there was a difference between the two groups of parents only in the mothers’ cohesion subscale scores. Those perceiving inadequate support has a less cohesive family environment (p<0.05).

No differences were found between these two groups of parents in the age or sex of their children, in the clinic attended by the children, in the socio- economic status of the families and in the number of parents resident in family. There was also no difference in the psychological test scores completed by the young people.

Of all the hospital and community personnel only contact with the diabetes health visitor (DHV) affected parents perception of support; those families who had not seen a D H V were more likely to feel a lack of support (Table 5 following pages). (It was not possible to examine the effect of contact with the paediatrician with a Chi-square test, as contact was 100% .)

Discussion This survey identifies parental views of

the role that hospital and community personnel play in providing support for families with diabetic children. The main source of help and support for this sample was from hospital-based services. All the parents within this sample indicated that the hospital paediatricians provided help and support, and they were most often cited as major providers (Table 1).

Services for children with diabetes in the Bristol area are led and co-ordinated by consultant paediatricians, and their central role in these services is supported by the parents’ views. Our sample does

Practical Diabetes january/February 1990 Vol7 No 1 27


Table 2 Parents suggestions for improving support to families with diabetic children

Number of families

Education More preparation for hypoglycaemic episodes Clearer instructions forglucagon pack More help with organizing child‘s diet More information on new researchldevelopments More education generally

Organization of diabetes clinic See the same doctorat each clinic visit Different opinions about management are confusing It is difficult to get supplies of equipment Too long waitingat diabetes clinic More discussion with parents alone in clinic More time at clinic visit to listen to parents and children See specialist rather than junior doctor Awkward having medical students in clinic Professionals should be stricter about glycaemic control

When first diagnosed More helplhome visits when first diagnosed Too many people to see when first diagnosed Hospital nurses don’t always understand diabetes Child to be treated at home rather than hospital Doctors should be more positive initially

Generalsupport for parents More diabetes health visitor home visits It is difficult to ask forhelp orask questions Contact with diabetes health visitor Set up self-help groups Help with expense of diabetic foodslmedic Need to talk to someone in same position Beable to contact DHVatnight More practical help when child is ill

,-alert bracelets

Support for the youngpeople Teenage group Liaison with school teachers More understanding from school More support with diabetic teenage problems Children need more support More attention to psychological health

71 2 2 7 I

Other comments Being able tophone professionalat any time has been very helpful 27 No suggestions 37

Table 3 Regression table: relationship of duration of diabetes and age at diagnosis with

perceived sufficiency of support

Regression Sum of Degrees of Mean sum Variance

Duration andage at

Duration controlling for

Age at diagnosis controlling

Residual 18.24 82 0.22

squares freedom of squares ratio

diagnosis 1.44 2 0.72 3.25p<0.05

age at diagnosis 0.53 1 0.53 2.4n.s.

for duration 0.02 I 0.02 0.1 n.s.

not include young people who are cared for by adult physicians or general prac- titioners, and thus we are unable to comment whether a service provided by a consultant paediatrician is the optimum situation.

The importance of the specialist nurse/health visitor in the care of adults (Refs 10,ll) and children (Ref 12) with diabetes is widely recognised. In the Bristol area, the first paediatric diabetic health visitor (DHV) was appointed in 1980, and the service has now expanded so that now all newly-diagnosed children are visited at home. In addition to education and support at the time of diagnosis, their role involves liaising with the consultant paediatricians and schools, attending diabetes clinics and visiting families where there are known problems with diabetes management.

At the time of this study a substantial number of children had not been visited by a DHV, because of lack of availability of this service in their particular locality (each DHV visits families within health district boundaries rather than working with a particular paediatrician).

Although almost a quarter of the sample had not been in contact with a DHV, they were the second most frequently cited major provider of support (Table 2 previous page). In addition, parents who perceived insufficient support overall were less likely to have had contact with a DHV. The perceived benefit of the DHV however was not universal as 20% of families who had been in contact with a DHV did not feel they had provided any support. Thus, this study identifies the importance of the DHV in providing help and support to many but not all parents.

A prospective randomised study design would be required to confirm the important role of the DHV in terms of parental support and cost saving efficacy. Using such a design, Stein and Jessop (Ref 13) studying a heterogeneous group of children with chronic diseases have demonstrated a significant beneficial effect of a ‘Pediatric Home Care Pro- gram’ on parental satisfaction with care.

Almost all parents had been in contact with school teachers concerning their child’s diabetes, but 36% had not found teachers to be supportive. As children spend a large proportion of their lives in school this result was disappointing. Lack of support from teachers may well be related to their generally poor understanding of diabetes (Ref 14), which stems partly from insufficient input from the health service staff.

Surprisingly only about a third of parents had been in contact with another parent of a diabetic child. Such contact was found helpful by most of these, although was not considered a major source of support. An active parents’

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Table 4 Regression table: relationship of mean glycated haemoglobin in the six months before interview and duration of diabetes with perceived sufficiency of support

Regression Sum of Degrees of Mean sum Variance

Duration and HbA, 1.57 2 0.78 3.3p<0.05

HbA, controlling for duration 0.39 I 0.39 1.7n.s.

Residual 19.63 82 0.23

squares freedom of squares ratio

Table 5 Parents’ perception of the adequacy of support: contact with diabetes

health visitor

Contact No contact

Sufficient

Insufficient

Chi-square = 3.9 p < 0.05

support N=47 N = 8

support N=20 N = l I

support group exists in the Bristol area, details of which are given to families at the time of diagnosis. A number of parents commented that they were unable to attend meetings because they lived too far away. Other parents reported that they had chosen not to attend meetings, as they preferred not to focus the family’s attention on diabetes by becoming involved in diabetes groups.

A third of parents considered that, overall, they had not received sufficient support since their child’s diagnosis. Parents of children with a longer duration of diabetes who were younger at diagnosis were more likely to be unsatisfied with support services. We would suggest three possible reasons for this:

(1) the marked improvement in services in recent years in this area;

(2) support services being mainly directed to newly diagnosed children rather than those with a longer duration of diabetes;

( 3 ) a young child with diabetes pro- vides greater difficulties for parents. Banion et a1 demonstrated that the younger children were at diagnosis the more concerned mothers were about hypoglycaemic reactions and the availability of help and support (Ref 4).

Parents who were unsatisfied with support services, had less cohesive families. Families with less internal support may need greater resources from hospital and community. The children of these parents also had poorer metabolic con-

trol in the six months before interview although this appeared to be a reflection of their longer duration of diabetes.

Parents suggestions for improving support covered a wide variety of aspects of care (Table 2 previous page). There were however a few recurring themes. The most frequently cited theme concerned immediacy of access to professional advice. Twenty-seven (31%) parents commented that the facility to phone a professional for advice at any time had been particularly helpful and an increased access to a DHV was suggested by 9 (10%) parents.

Clarity and consistency of advice was another important theme. For instance eight (9%) parents commented that they would prefer to see the same doctor at each clinic visit and four (5%) parents stated how confusing it was to receive conflicting advice from different professionals. The time following the diagnosis of diabetes was cited by 11 (13%) parents, as a period when a greater input of support would be particularly advantageous.

We cannot judge with what confidence the results from this survey can be generalised to other families of children with diabetes in other parts of the coun- try, as our results are likely to reflect to some degree the personalities of the individual hospital and community staff involved with this sample. It is also difficult to be certain if similar results would have been obtained from the 17 families who did not participate in the study.

We are also uncertain about the level of parental satisfaction that is achiev- able. It seems likely that even with opti- mal provision, there would remain a small group of families who would per- ceive insufficient support. This might be due to personality conflicts between parents and professionals, or to parents’ difficulty in accepting support and com- ing to terms with their child’s diagnosis.

Accepting these limitations, the results of this study indicate a number of ways in which support to families with diabetic children might be improved:

(1) provision of easy access to professional advice;

( 2 ) clear and consistent advice to families:

(3) provision of increased support at the time of diagnosis;

(4) identification of particular families who may require special attention and support (eg those with children diagnosed early in childhood with a long duration of diabetes, and those where internal family support appears to be lacking):

(5) facilitate access to other parentsof diabetic children;

(6) increased liaison and education of teachers to improve support in schools; and

(7) provision of a diabetic health visitor service.

Acknowledgements We thank Drs T L Chambers and D C

L Savage for allowing us to study their patients and for helpful advice, and Dr C Pennock for his advice on glycated haemoglobin results. We are also in- debted to the families who took part in this research. AHC was supported by a grant from Novo Laboratories.

Correspondence to Dr R J W Wil- liams, The Institute of Child Health,The Royal Hospital for Sick Children, St. Michaels Hill, Bristol BS2 8BJ. Reprints on request.

References 1. Thomas D. ‘Living with a diabetic child’in Care

of the child with diabetes. Edited by JD Baum and Kinmonth A-L. Churchill Livingstone. Edin- burgh. 1985; 3-11.

2. Tavormina JB, Boll TJ, Dunn NJ, et al. Psychosocial effects on parents of raising a physically handicapped child. Journal of Abnormal Child Psychology, 1981; 9: 121-31.

3. Lindsay M. ‘Emotional Management’ in Care of the Child with Diabetes. Edited by JD Baum and Kinmonth A-L. Churchill Livingstone, Edin- burgh, 1985: 41-63.

4. Banion CR, Miles MS and Carter MC. Problems of mothers in management of children with diabetes. Diabetes Care. 1983; 6: 548-51.

5. Moos RH. The social climatescales: an overview. The Social Ecology Laboratory, Stanford Univer- sity and the Veterans Administration Hospital. Palo Alto CA, 1981; Consulting Psychologists Press Inc.

6. Birleson P. The validity of depressive disorder in childhood and the development of a self-rating scale: a research report. Journal of Child Psychology and Psychiatry, 1980; 22: 73-88.

7. Reynolds CR and Richmond BO. What I think and feel; a revised measure of children’s manifest anxiety. Journal of Abnormal Child Psychology. 1978; 6: 271-80.

8. Piers EV and HarrisDB. Piers-Harrischildrenk selfconceptscale. Nashville, TN : Counselor Record- ings and Tests 1967.

9. Menard L, Dempsey ME, Blankstein LA, et al. Quantitative determination of glycosylated haemoglobin A, by agargelelecrrophoresis. Clinical Chemis- try, 1980; 26: 1598-1602.

10. Spathis GS. Facilities in diabetic clinics in the UK: shortcomings and recommendations. Diabetic Medicine, 1986; 3: 131-6.

11. The place of nurses in the management of diabetes (annotation). Lancet. 1982; i: 145-6.

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12. Farquhar JW, Campbell ML. Care of rhe diabetic child in rhe community. BMJ, 1980: 281: 1534-7.

13. Stein REK, Jessop DJ. Does paediatric home care make a differenci7for children with chronic illnes? Findings from the Paediatric Ambulatory Care Treatment Study. Paediatrics, 1984: 73: 845-53

14. Bradbury AJ, Smith CS.An aswssmentofrhe diabetic knowledge of school teachen. Archives of Diseases in Childhood, 1983; 58: 692-6.

Appendix 1 Psychological tests 1 ) The Moos family environment scale (Ref 5)

This 40 item test describes ten areas of

(a) Cohesion - the degree of help and support family members provide for one another;

(b) Expressiveness - the degree of open- ness within the family;

(c) Conflict - the amount of openly expressed anger and lev& of conflict within the family;

family environment:

(d) Independence: (e) Achievement orientation: (f) Intellectual - cultural orientation; (g) Active - recreational orientation; (h) Moral - religious emphasis; (i) Organisation - the importance of

structure and organisation in planning family activities:

(j) Control - the degree to which set rules and procedures are used to run family life.

The test has adequate reliability with internal consistency coefficients for the ten subscales ranging from 0.61 to 0.78 and test- retest coefficients, over a period four months, range from 0.54 to 0.91.

The Birleson’s self-rating depression scale (Ref 6)

This is an 18 item questionnaire consisting of statements about a child’s mood in the past two weeks. The test has adequate reliability with a test-retest coefficient of 0.80 and internal consistency coefficient of 0.86, within the constraints of a small sample size.

The revised measure of children’s manifest anxiety (Ref 7)

This was chosen as a measure of anxiety and is a shortened version of the extensively used children’s manifest anxiety scale. It con- sists of 28 items plus an additional nine *lie’ items. The test was found to have an internal consistency coefficient of 0.83; the test-retest stability for the revised version was not stated.

The Piers Harris children’s self concept scale (Ref 8)

This is an 80 item questionnaire consisting of items describing how children feel about themselves. The manual quotes internal consistency coefficients ranging from 0.78 to 0.93

and test-retest coefficients after four months ranging from 0.71 to 0.77.

Appendix 2 Comparative study of glycated haemoglobin levels

The glycated haemoglobins were analysed in three laboratories using the Corning agar gel electrophoretic method (Ref 9). A different scanning procedure was used in laboratory 3. The normal range of laboratory 1 and 2 is 4.5-7.5% and results are known to be equivalent as frequent quality control checks are routinely performed. The normal range of laboratory 3 is 4.5-6.5%.

Twenty-five samples collected in EDTA bottles were exchanged between laboratories 1 and 3 and analysed in both laboratories performed using routine procedures. The samples were selected to cover a wide range of glycated haemoglobin values. Regression analysis was used to compare results and derive a correction factor for laboratory 3 results.

The correlation between the two sets of HbA, results was 0.98 (p<0.001). The regression equation was as follows:

(where x are results from laboratory 1 and y, results from laboratory 3). The standard error of y was 0.58.

Results from laboratory 3 were adjusted according to the above regression equation so that they were comparable with the other two laboratories.

x = 1.194 (y - 0.48)

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Support for families with diabetic children: Parents' views