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Quality of life of children with Type 1 diabetes mellitus and the difficulties they and their families face.

Type-1 diabetes is associated with numerous organic and psychological complications, which influences the quality of life of affected individuals.
This cross-sectional study aimed to assess certain aspects related to the quality of life of diabetic children and their families.
The study included 140 mothers of type-1 diabetic children aged between 6 and 12 years from the outpatient pediatrics clinics of Prince Salman Hospital, and the pediatrics diabetic clinics of both the pediatric Hospital of King Saud Complex and the King Khalid University Hospital, Riyadh, Saudi Arabia.
The mean age of participant diabetic children was 9.7 years (standard deviation SD ± 2.1 years). Females constituted 53.6%; 93% were Saudis; 78.6% were at school, of whom 42.6% reported excellent school performance.
The mean maternal age was 39.0 years (SD ±7.9); 49.3% of mothers were secondary school graduates and above, compared to 59.3% of fathers. Illiterate mothers constituted 18%, compared to 7.1% of fathers. Working mothers constituted 16.4%.
Over half of the study sample (55%), had been diagnosed with diabetes within the previous four years, and only 5.8% had suffered from diabetes for 9 to ten years. Over half (52.1%) reported having diabetic relatives living with them at home, 46.6% of whom were siblings and 9.6% were mothers.
Regarding diabetic children’s practice of insulin injection and glucose home monitoring, 29.3% injected insulin and performed glucose home monitoring by themselves, all of whom were older than 8 years. These included 37% of the females and 20% of the males (p value < 0.05). A large proportion of mothers (85.7%) administered the injection and performed glucose home monitoring for their children; 41.4% of the children had glucose home monitored twice or more per day, and only 9.3% performed it only if they felt unwell.
Almost half of the mothers (49.3%) stated facing difficulty in finding suitable food items for their diabetic children in restaurants, 37.8% faced this difficulty in supermarkets, and 68% reported never found suitable food items at school.
Table 1 demonstrates certain activities and psychosocial aspects of diabetic children and their mothers that are affected as a result of the child’s health state. Regarding the child’s daily activities, 62.9% of mothers never noticed any limitations on their child’s activities, 5.7% stated always noticing limitations, and 5.0% often. From the children’s perspective, 37.9% complained of having less activity than their friends.
Disruption of the family’s activities as a result of the child’s health status was reported as never (35.0%), often (10.7%), or always (5.0%). Forty four mothers (31.4%) reported always having limited time for their personal needs as a result of their child’s health requirements.
School staff informed of the child’s diabetic state was the child’s teacher (88.9%), student director (50.8%), headmaster (41.3%), or school nurse (5.6%). Cooperation of the school staff members was reported particularly towards snack times (43.2%), injection time (82.5%), frequent use of lavatory (10.3%), and frequent absence from school (26.7%). If the diabetic child became sick at school, mothers were called to pick up the child (92.1% ), or the child was taken care of by the teacher (20.6%) or school nurse (4.0%). There were no significant differences in the children’s overall school performance with regards to different levels of cooperation of the school staff (p = 0.14).
Regarding some aspects of medical care, 52 (37.1%) were always versus 62 (44.3%) were never able to contact treating staff any time. 109 (77.9%) and 117 (83.6%) were able to found the medicine and insulin syringes respectively, in the hospital most of the times, and 65.0% reported never finding the test strips at the hospital. Glucose home monitoring devices had been provided by the hospitals to only 34.3%.
Regarding the number of times participant children visited the emergency room (ER) due to diabetes in the previous year, 41.4% had visited the ER 1 to 3 times, 3.6% had visited the ER over eleven times, 14.3% visited the ER 4 to 11 times, and 40.7% never. Among ER visitors, 37.3% were strongly satisfied with the level of care they had received while 8.4% were not.
By looking into some factors and their relation with the frequency of ER visits, although most of 12 year old children 22 (56.4%) had not visited the ER in the previous year, and the females had visited ER less than males (56.0% vs. 63.1%), the differences were not significant (p = 0.19 and 0.90) for age and gender respectively.
The frequency of ER visits was slightly higher among children who did not have another diabetic at home (62.7% vs. 56.2%, p = 0.70), those children of mothers with high knowledge about diabetes (62.7% vs. 50.0%, p = 0.73), but was similar regarding diabetes duration (p = 0.09). Children who injected insulin or performed glucose home monitoring for themselves were more likely not to have visited the ER.
45.5% vs. 38.5%, p = 0.91 and 47.7% vs. 37.5%, p = 0.69, respectively). No association was found between frequency of glucose home monitoring and frequency of ER visits (p = 0.12).
By asking the mothers about their feelings regarding certain aspects of their child's diabetic state, 31.4% reported feeling embarrassed of telling others about their child’s diabetes, 42.9% were bothered by feelings of pity from others, and 39.3% reported a feeling of bad luck as a result of their child’s diabetes. With regard to the child's psychosocial status, some mothers stated noticing that their children felt inferior to others (27.9%), and had problems in getting along with others (35.7%). The activities and psychosocial status of the diabetic children were not related to the presence of another diabetic at home, or to knowing other diabetic children. The only significant relation among mothers was found between feelings of bad luck and knowledge level about diabetes (34.3% vs. 52.6%; p = 0.04) for high and low level respectively.
Two mothers (1.4%) were members of a society or an organization that cared for diabetic children, and 3 children (2.1%) participated in a diabetic club. About one third of the mothers (33.6%) knew other mothers of diabetic children with whom they exchanged experiences. Only 16 children (11.4%) who came in contact with or shared activities with other diabetic children.
From the mothers' point of view, the child was the main source of difficulty in dealing with his/her diabetic state (62.1%), and the health staff was the major source of support (74.3%).
Sources of education on diabetes among mothers were mainly the treating physician (96.4%) followed by the diabetic educator (76.4%). This was similar among children (81.4% and 63.6%, respectively).
The most known problems of diabetes among mothers were signs and symptoms of hyperglycemia (90%), signs and symptoms of hypoglycemia (88%), and actions in either situation, followed by methods and sites of injecting insulin (75.0%). Among children, the most known areas were signs and symptoms of hyperglycemia (79.3%), signs and symptoms of hypoglycemia (78%), and actions in either situation, followed by proper diet (52.1%). Older children had significantly higher diabetic knowledge (p = 0.03). There was no significant difference in level of diabetic knowledge by gender.
− Reported by: Dr. Khawater Bahkaly, Dr. Abdul Jamil Choudhry (Field Epidemiology Training Program).

Editorial note:

Type 1 diabetes usually initiates in children and young adults. Genetic and environmental factors play a role, in addition to diet, obesity, and stress.1 Recent research has shown that the health-related quality of life in children with diabetes is markedly poorer than that of children in the general population, more closely resembling that of children with serious chronic diseases such as cystic fibrosis and leukemia.2

In general, mothers in our study perceived their children's quality of life as good. The diabetic state of the child was perceived as having a moderate impact on the child’s and the family’s activities, relatively low impact on psychosocial aspects, and no impact on school performance.
The study showed that diabetic knowledge of both children and mothers was insufficient. This lack in knowledge was not related to the mothers’ academic educational level. The mothers’ claim of finding difficulties in contacting health staff may be related to the deficiency in diabetes knowledge and self management. Frequent follow up, in addition to continuous guidance and help in dealing with diabetes should improve self-efficacy for self-management, patient satisfaction and decrease emergency room visits. This finding is similar to the results of two previous studies, in both of which the intervention groups had received significantly more recommended preventive procedures, helpful patient education and personal support than controls.3,4
The study showed that families; mothers in particular, carried the load of diabetes management, as a result of which they suffered from some psychosocial problems. However, studies have demonstrated general improvement in family adjustment with time.5
Health care should concentrate on education of diabetic children and their families toward diabetes self management through group teaching and practical sessions. Health education should also be extended to the general population through mass media and school health services. Establishment of diabetic organizations and clubs may improve knowledge and provide personal support, which can lead to better metabolic control and better life. One staff member should be trained at each school to understand the disease so as to be able to respond to the diabetic student’s needs.


1.Lissauer T, Clayden G. Illustrated textbook of pediatrics. Richard Furn; 2nd ed. London (UK) 2001: P. 337-8.

2.Hesketh KD, Wake MA, Cameron FJ. Health-related quality of life and metabolic control in children with type 1 diabetes. Diabetes Care 2004; 27: 415–20.

3.Howells L, Wilson AC, Skinner TC, Newton R, Morris AD, Greene SA. A randomized control trial of the effect of negotiated telephone support on glycaemic control in young people with Type 1 diabetes. Diabetic Medicine 2002; 19(8): 643–8.

4.Wagner EH, Grothaus LC, Sandhu N, Galvin MS, McGregor M, Artz K, Coleman EA. Chronic Care Clinics for Diabetes in Primary Care: A system-wide randomized trial. Diabetes Care 2001;24:695-700.

5.Northam E, Anderson P, Adler R, Werther G, Warne G. Psychosocial and family functioning in children with insulin-dependent diabetes at diagnosis and one year later. J Ped Psych 1996; 21(5):699-717.

Table 1: Activities and psychosocial aspects of diabetic children and their mothers that are affected as a result of the child’s health state.
Activities and psychosocial aspects
N (%)
Mother noticed limitation on child activity
52 (37.1)
Child complaining low activity
53 (37.9)
Mother find limitation of time for personal need
108 (77.1)
Mother feels shy to tell others about child diabetes
44 (31.4)
Mothers bothered by pity feelings from others
60 (43)
Mother feels bad luck due to child diabetes
55 (39.3)
Child feel inferior due to diabetes
39 (28)
Child has problems in getting along with others
50 (35.7)

نوعية المعيشة بالنسبة للأِطفالِ المصابين بالنوعِ الأول من داء السكّريِ والصعوباتِ التي يواجهونها هم وعوائلهم في التعايش معه.

النوع الأول من السكّري قد يُسبّبَ العديد مِنْ المضاعفات العضويةِ والنفسيةِ، ويؤثر على الحياة اليومية. هدّفتْ الدراسةُ لتَقييم نوعيةِ المعيشة لدى الأطفالِ المصابين بالسكرِي وعوائلِهم.
هذه دراسة عرضية مقطعية تُضمّ 140 مِنْ أمهاتِ أطفال مرضى السكري النوع 1 تتراوح أعمارِهم بين 6 و12 سنةِ مِنْ عياداتِ أطفال مستشفى الأميرِ سلمان، و مجمع الملكِ سعود ومستشفى الملك خالد الجامعي بالرياض ، في الفترةِ بين رمضان و ذي الحجة 1428 هـ.
البنات شكّلنَ 53.6% مِنْ عيّنةِ الدراسةَ. متوسط العُمر والإنحراف المعياري (9.7 سنة ± 2.1). الأداء المدرسيِ العامِّ كَانَ ممتازَ بين 42.6 %. متوسط أعمار الأمهات كَانْ (39.0 سنة ± 7.9). بالنسبة للمستوى التعليمي للأمهات كان 49.3% من خريجاتَ المدرسةِ الثانوية. أكثر مِنْ نِصْف عيّنةِ الدراسةَ تم تشخيصهم بمرض السكّري ُقبل أقل من أربع سنوات 77 (55%). كَانَ 73 (52.1%) لديهم قريبُ مريض بالسكرُي في نفس المنزل، 34 (46.6 %) منهم كَانوا أشقاءَ و7 (9.6 %) كَانوا أمهاتَ.
بخصوص ممارسات الأطفالِ مِنْ حقنِ الأنسولينِ ومراقبة الجلوكوزِ، 29.3% يُمْكِنهمُ حْقنَ الأنسولينَ ومراقبة الجلوكوزِ بأنفسهم، ( 37 % من البناتِ و 20 % مِنْ الأولادِ) (p-value > 0.05). نِصْفِ الأمهاتِ 69 (49.3 %) ذَكرنَ بأنّهن يواجهن صعوبةَ في أغلب الأحيان في إيجاد الغذاءِ المناسبِ لأطفالِهم المرضى بالسكريِ في المطاعمِ و53 (37.8 %) في الأسواق المركزية. كما أوضح 95 (68%) أنّهم لا يجدون الغذاءَ المناسبَ في المدرسةِ.
بخصوص نشاطات الطفلِ اليوميةِ، 5.7% لاحظتْ أمهاتهم قصور في نشاطهم مقارنة بأقرانهمَ، و 62.9% لم يلاحظَن أيّ تأثر. مِنْ جانبِ الأطفالَ، 37.9% إشتكى مِنْ النشاطِ المنخفضِ مقارنَة بأصدقائِهم.
فيما يتعلق بإعْلام المدرسةَ حول مرض الطفلِ، 88.9% أخبروا المعلمين، و50.8% اخبروا مدير المدرسة. لاحظَ 43.2% التعاون الدائم مَع أطفالِهم المرضى بالسكرِي بخصوص أوقات الوجبات الخفيفةِ، 82.5% بخصوص وقتِ الحقنِ، 10.3 % بخصوص حاجةِ الطفل المتكرّرةِ لدورة المياه، و26.7 % بخصوص الغيابِ المتكرّرِ عنْ المدرسةِ.
بالنسبة لبَعْض نواحي العنايةِ الطبيةِ، ذكر 44.3% انهم لم يتمكنوا من الاتصال بالفريق المعالج خارج وقت المراجعة الدورية، و 85% كانوا راضين عن الخدمات المقدمة في غرفة الطوارئ.
نسبة زيارة عرفة الطوارئ كَانتْ أعلى قليلاً بين الأطفالِ الذين ليس لديهم اقاربْ مرضى بالسكريُ في المنزل (62.7 % مقابل 56.2 %) (p = 0.70)، وبين أطفالِ الأمهاتِ الواسعات الإطّلاعِ حول المرض (62.7% مقابل 50.0%) (p = 0.73).
ذكر 44 (31.4 %) من الأمهات انهن يشَعرنَ بالخجل في حالة إخْبار الآخرين عن مرضِ الطفلِ، 42.9% يتضايقنَ من مشاعرِ الشفقةِ مِنْ الآخرين نحو أطفالِهم، و 39.3% يشعرن بالحظَّ السيئَ بسبب مرض أطفالِهم. فيما يتعلق بحالة الأطفال النفسية، 27.9% من الأمهاتِ لاحظَن بأنّ أطفالَهم يشَعرون بالنّقص بسبب المرض، و 35.7% كَانَ لدى الطفل مشاكلُ في الإنسِجام مع الآخرين.
الأمهات في هذه الدراسة اعتبرن ان معيشة أطفالِهم متأثره نوعا ما فيما يتعلق بالنشاطاتِ الجسمية و أقل من ذلك بالنسبة للناحية النفسية، ولا تأثيرَ للمرض على الأداءِ المدرسيَ. أغلب الأمهاتِ اتفقنَ على عدم وجود أشخاصَ في المَدارِسِ يُمْكِنهمُ أَنْ يَعتنوا بالأطفالِ المرضى بالسكرِي.
مستوى المعرفة بمرض السُكّري عند الأطفالِ و الأمهاتِ كَانتْ غير كافيه وافتقرت لبَعْض النواحي الأساسيةِ. جزء كبير أيضاً من الأطفالِ لا يَستطيعُون أَنْ يَتعاملَوا مع مرضِهم ويَعتمدونُ كلياً على الآخرين. أظهرت الدراسةُ غيابَ المنظماتِ والنوادي والمعسكراتِ التي يُمْكِنُ أَنْ تقدم الدعمَ و التعليمِ للأطفالِ مرضى السكريِ أَو عوائلِهم.