Background
Methods
Study location
Study site
Sampling procedure and sample size determination
Adolescents with Type 1 diabetes | N | % | |
---|---|---|---|
Sex | Males | 2 | 20 |
Females | 8 | 80 | |
Age | |||
12-15 years (1 each) | 4 | 40 | |
16 years | 3 | 30 | |
17 years | 3 | 30 | |
Mean Age 15.3 years | |||
Grade | Grade 6 | 2 | 20 |
Grade 8 | 2 | 20 | |
Grade 9 | 2 | 20 | |
Grade 10 | 2 | 20 | |
Grade 11-12 | 2 | 20 | |
Duration on insulin | |||
1 years | 1 | 10 | |
2 years | 2 | 20 | |
3 years | 3 | 30 | |
5-6 years (1 each) | 2 | 20 | |
7 years | 2 | 20 | |
Lives with | |||
Biological parents | 8 | 80 | |
Sibling (sister) | 1 | 10 | |
Grandparent | 1 | 10 | |
Guardians
|
N
|
%
| |
Sex | |||
Males | 2 | 25 | |
Females | 6 | 75 | |
Age | 30-54 years | 8 | 100 |
Mean age 37.3 years | |||
Number of children keeping | |||
2 children | 2 | 25 | |
4 children | 2 | 25 | |
5 children | 2 | 25 | |
7 children | 2 | 25 |
Data collection
Theme | Source | Quotation |
---|---|---|
Stressors
|
Adolescents
| Sometimes my friends laugh at me because of the diet I take and I feel bad and most of the time am depressed. Female, grade 11 |
In my family they want me to stop injecting myself. So what they say depresses me, they say that injecting myself is affecting my body. As for me I don’t feel good to injecting myself but it’s for my own good. Female, grade 9 | ||
Too much, I feel low sometimes and I keep on asking the question “why me why me”. Sometimes I feel like I can stop and just develop a negative attitude towards diabetes. “How can I take it back, out of my life?” Female, grade 12 | ||
I become depressed because of injecting myself, you see I have been injecting myself for seven years on the same spot but what can I do it’s my life. Most of my stress comes from injecting myself. Female, grade 12 | ||
Because they want me to stop injecting myself and they also complain about transport is expensive and even the food for diabetes people is very expensive, it stresses me sometimes. Female, grade 9 | ||
I worry that I be swollen again and my family worry about my health a lot especially when I am very ill like swollen. I can see when they are worried. They also worry about money, especially money for buying food and cloths. Male, grade 8 | ||
Yah! Like when I am with friends they may buy sweet things (food) that I cannot eat and then the laugh at me. I can’t eat such food because I can get sick, so it’s very difficult and I feel depressed at times. Female, grade 10. | ||
I am stressed if the blood sugar is high. I start feeling very sick and sometimes vomiting and tired. I even get slim such that I start looking like I am HIV infected (Laughs). Female, grade 10 | ||
I sit down most of the time and ask myself what made me to have diabetes, but I have to stop having such thought although I think a lot and I think I get stressed. Female, grade 6 | ||
Sometimes I just ask why me? I have friends and most of them have no diabetes. But what I hate most is that I cannot take sweet things. And I also now wonder whether people with diabetes give birth, so I feel stressed. Female, grade 10 | ||
I just feel feed up every time I have to inject myself take blood for sugar test and prick myself every time, so its stressful. Female, grade 10 | ||
I worry about how it will affect my school or to find a job. Like other schools they refuse to take us, like one girl she also comes here and she was told to go back because she is sick (has diabetes-author insertion). Female grade 8 | ||
Stress coping strategies
|
Adolescents
| Prayers! I pray a lot. Mostly alone but sometimes with my family members. I usually go for prayers on Tuesdays, Thursdays, Fridays, Saturdays and Sundays. Male, grade 8 |
Sometimes when I am complaining, talking to my mother make me feel better. When I am stressed and depressed my friends cheer me up, they tell me fun stories and take me for a walk. They help me a lot. Female, grade 12 | ||
I think knowing people who have diabetes and asking them how they have managed to live with diabetes can help me copy with stress. Female, grade 10 | ||
I have to find what to do like at school I have to start playing with my friends that way I stop think about those things (stressors – author insertion). Female, grade 11 | ||
I like to think of good things about my life, because I am free from any bad thoughts. Female, grade 11 | ||
My friends tell me that I should be taking care of myself and not to eat sweet things (food- authors’ insertion) and a looking after myself and that makes me feel cared for. Female, grade 9 | ||
I don’t usually get worried or stressed because I follow what I was told on how to inject myself with insulin. Female, grade 6 | ||
I think if the hospital is near to me or may be if there is transport in place it will help me cope with the stress of transport money. Female, grade 10 | ||
The bible, I sometimes just read the bible and pray to God to give me strength and just hala (call-authors’ insertion) my friends or my brothers will come and make up stories to make me laugh. Female, grade 10 | ||
Sometimes it (stress) just comes like that; sometimes like when sugar is high, the Blood Pressure also goes up. And when I am feeling like that I just take water and sleep. Female, grade 8 | ||
Stress coping strategies
|
Guardians
| The biggest thing that makes me less stressed is that when I compare to the way he was and now, I feel less burdened than when he was very sick. Right now, everything is seem fine I would not complain. But for others they are stressed because of lack of transport, but others its laziness like one parent here the doctors was scolding at her is a good example, her two children all have diabetes but she has never been bring them for reviews, that way when the problem is big they get more stressed. The children should be loved the way we love ourselves. Me this child is my grandchild and I have other children I am keeping they are all orphans but I make sure I take care of them and take them to hospital as if they are my own. Female guardian aged 54 |
The big thing here is prayer, whenever I feel like praying I pray and it helps me. Female guardian aged 35 | ||
It up to me I have to be ready that whenever she is in hypo, I can monitor and take her to the clinic. I have been given a letter to take but only when I suspect since I have no glucometer. But also to make sure that she has food when she is in hypos and make sure that she can be giving herself food when she suspects hypos. Male guardian aged 37 | ||
Prayer, I just have to pray, whenever I few like praying, in the morning or afternoon I pray. Female guardian aged 36 | ||
For me it is to pray and go to church. You see if you go to church you get a lot of encouragement and support that helps a lot to deal with her situation. Female guardian aged 30 | ||
Diabetes care
|
Adolescents
| Umm, everything is ok, it’s just the place that makes me feel bad, the place makes me few like am very sick buts every thing is ok. Male patient grade 8 |
Sometimes I come at the hospital and I find that there is no medicine, insulin, so they can be keeping more insulin and other medication. Male, grade 8 | ||
They need to introduce classes on diabetes especially among youths. They need to be talking to us about things that we should not be indulging ourselves in. Just things, things that can worsen our health as youths. Female, grade 12 | ||
If they could give out glucometers to everyone so that each one can be following the sugar levels. They should also start a gym for diabetes people. Like now I am gaining a lot of weight and it’s not good for my health but the gym could help me. Female, grade 12 | ||
Most of us especially in my situation (with diabetes and poor-author insertion), we complain that transport is a problem coming this far (coming to the hospital–author insertion). Female, grade 11 | ||
The biggest is distance and transport- you see we all have to come here (UTH) because in clinics they don’t do reviews. So we all have to come here for reviews and some come very far and transport is very expensive. Female, grade 12 | ||
Also money for buying insulin is a problem, a bottle of insulin is US$10. In most cases we get insulin here but sometimes we have to buy. Mostly we have to get our own strips which cost at US$16. My father buys for me but sometimes he gets the pay late it’s difficult to get strips. Female, grade 12 | ||
Us patients we complain about transport to come here for reviews but also many people do not have the money to pay for treatment. Male, grade 7 |
Ethical approval
Data analysis
Results
Stressors
Sometimes they face segregation, they let them play alone or let them do things alone because some of them think that it is communicable and they can get it if they hang out with them. Pediatrician
In my family, they want me to stop injecting myself insulin. What they say stresses me a lot. They say that injecting myself is damaging my body. Female, grade 9
Insulin makes them fat and when you look at adolescents particularly if I narrow it to the girls, they want to be slim. Pediatrician
Children with such condition (diabetes) find it difficult to get married and cannot have children. Diabetes comes with many complications; so many men will not want to marry such a girl. Female guardian 36 years oldSometimes I just ask why me? I have friends and most of them have no diabetes. But what I hate most is that I cannot take (eat) sweet things (food – authors’ insertion). And I also now wonder whether people with diabetes give birth, so I feel stressed. Female grade 10
Some inject themselves two times a day some three times a day. So the thing of injecting themselves every time is a stress as well. It brings stress to them whereby you have to be thinking about that needle and if you don’t do that anything can happen. Diabetes Peer educatorI become depressed because of injecting myself, you see I have been injecting myself for seven years on the same spot but what can I do it’s my life. Most of my stress comes from injecting myself. Female, grade 12
I am stressed if the blood sugar is high I start feeling very sick and sometimes vomiting and become tired. I even get slim such that I start looking like I am HIV infected (Laughs). Female grade 10
Female adolescents often get stressed in the sense that they usually have vaginal thrush and that stresses them more because they think how did I get it especially if they do not engage in sexual relationships. Pediatrician
Sometimes my friends refuse playing with me, like my cousin used to say that we can’t play with you because you have a disease and we don’t want to catch it. Girl, grade 9
Coping strategies
It also helps for instance through counselling like psychosocial support and not just educating them and giving support to both adolescents and their parents. Diabetes Peer Educator
I have to find what to do. Like when I am at school I have to start playing with my friends that way, I stop thinking about those things (stressors – authors’ insertion). Female, grade 11
Prayers! I pray a lot. Mostly alone but sometimes with my family members. I usually go for prayers on Tuesdays, Thursdays, Fridays, Saturdays and Sundays. Male, grade 8For me it is to pray and go to church. You see if you go to church you get a lot of encouragement and support and that helps a lot to deal with her situation. Female guardian aged 30
We try to integrate them with other peers with diabetes so that they don’t feel they are alone in this situation. Once, they see their friends and know that they are also going through the same things as them it helps reduce the stress they go through. Pediatrician
Diabetes care and diabetes self-care
Especially the girls when they reach adolescence they do not want to inject themselves with insulin in certain parts of the body like shoulder (upper arm - authors’ insertion ) and thighs because these parts are important to a girl cosmetically but they are also good parts for insulin absorption. In addition insulin makes them fat, so they avoid it. Nurse in Charge of Diabetes Clinic
Sometimes I come at the hospital and I find that there is no medicine, insulin, so they can be keeping more insulin and other medication. Male, grade 8Monitoring of sugar is practically impossible in our environment because when you look at a glucometer it is roughly about US$ 47.60 – US$ 65 and that just a one off thing because they need also strips which are expensive roughly about US$40 for 50 strips”. Pediatrician
Others have their own beliefs that if you continue taking the medicine like insulin worsens the condition so they stop and start giving them (adolescents) herbal medicine. Nurse in Charge of Diabetes Clinic
There are certain things that you cannot properly explain in a local language for instance when you say insulin, this person wants to understand what insulin is. Many times we don’t know the equivalent words in local languages, so language is a barrier. Diabetes Peer educator
The biggest is distance and transport- you see we all have to come here (UTH) because in clinics they don’t do reviews. So we all have to come here for reviews and some come very far and transport is very expensive. But also transport money and money for food. Especially if I am here and I am hungry I need money to buy the food, I was told to be eating but I cannot get money here. Grade 8 male
The medicine that we receive requires that we keep it in the fridge but when I am at the farm I don’t know how I can handle this medication. Female guardian aged 36
How diabetes affects adolescents’ QoL and their families
So really when you talk about an African child with diabetes the life span is quite short because of the health care system and the availability of the critical things that they need to survive on, that is the insulin. And also the commodities, the needles, the syringes are unavailable sometimes. Pediatrician
My mother gets very emotional like she even cries and sometimes she tells me, “If I could take it away from you I would have done it”. But also sometimes when I am at school, I lose concentration and many times I can’t see properly on the blackboard. Female grade 12
Sometimes if I want to do something or go somewhere they tell me, you have diabetes you don’t have to go somewhere, because one time I collapsed while at school because of hypoglycemic episodes and in the past I used to play with my friends for a long time, but now within a short period of time I have to go and eat. Male in grade 8
My parents now have to monitor me and constantly ask me if I have injected or eaten. I feel bad. Female, grade 10