Non-Compliance In Teenage Diabetes

[StephenM]

Non-compliance in teenage diabetics has always been a problem. However for various reasons the problem seems rather worse these days. The teens are difficult years as you enter them immature physically, mentally and sexually and leave them mature (hopefully) in every way ? the transition from childhood to adulthood. Added to this there are raging hormones, spots, exam pressures and the desire to sleep 12 hours a day.

When I was young it was not uncommon to be admitted to hospital for a spot of re-stabilisation. The fairly inaccurate urine testing of those days meant that an infection or stomach bug could result in a few days stay in hospital as control disappeared out of the window. Somehow I managed to avoid too many stays in hospital. Whilst I did eat and/or drink to much at times this was mopre of a one off than a regular occurrence.

So why does hospitalisation (although usually for shorter periods than when I was a teenager) for teenage diabetics seem more common these days? I do wonder if it is that the tighter control achievable these days results in a greater teenage rebellion. It also seems that parents take control of their children?s diabetes for longer these days. Is it that the plan has been agreed between the consultant and the parents with the teen as a mere, possibly resentful, onlooker who has had no buy in? And what part does peer pressure pay?

What I want to do is throw this open to discussion and debate as members may have been teens in any of the last seven decades, and others parents to a diabetic child/teen in that time. Observations and thoughts please.

 

[Northerner]

Is it more common for teens to be hospitalised these days? I don't know - what makes you feel this might be the case?

 

[Caroline]

I think in general our expectations have changed so things are done differently. I'm not sure teens spend any longer or go there any more often than when I was a teen, but things change withthe times.

 

[delb t]

Our son was not hospitalised- and I am thankful for that although Our team always say that they do have more difficulies with the secondary age children.What makes you think children have been hospitalised - do you have some statistics? maybe its because parents/doctors are unaware of the symptoms- I know i was unaware so perhaps thats a reason and just to add my son has taken a mature and responsible approach to his diabetes I am so thankful for that. I dont think you can make a sweeping statement that parents take more control over their childs diabetes -we work with our son to get the best for him. these kind of statements are not what we need in a support forum!

 

[Redkite]

I haven't seen anything to indicate that type 1 teenagers are more likely to be hospitalised today than their counterparts in the past. But there's no denying that the teenage years are a challenging time, and made all the more so with D in the mix!

What's different? Better treatments (MDI and insulin pumps) have come along, together with BG meters, and with these have also come harder work and a proliferation of protocols for optimal diabetes management. So one could argue that managing diabetes is less "easy" than it was in the 70's and 80's. Unfortunately, most school staff (and many non-specialist medical staff) have no knowledge of these newer regimens, and view children/teens using intensive therapy as having "severe" or "badly controlled" diabetes! This type of ignorance can leave a young person feeling criticised rather than supported.

More generally, today's generation of teens are exposed to far more pressure than was the case in my day (before the advent of the Internet, mobile phones, social media, etc.). One hears far more stories of young people self-harming or struggling with eating disorders, and in the case of teens with diabetes, they obviously have an extra method to self-harm, ie insulin. Cases of diabulimia seem to be reported more frequently.

As a parent, I would hope to maintain a good relationship with my son through the teen years, supporting him as he becomes independent at his own pace, and making sure diabetes doesn't hold him back. His BGs are just data, we never speak of them as good or bad numbers, they are just data to be used to know what action to take. Diabetes is a small part of the whole person. His clinic team will see him alone for part of his appointment, then together with me for the other part, but even as a child the consultant has always spoken with him first, before talking to me. We are lucky with our team, some others are appalling!

How were your teenage years Stephen?

 

[Pumper_Sue]

So why does hospitalisation (although usually for shorter periods than when I was a teenager) for teenage diabetics seem more common these days? I do wonder if it is that the tighter control achievable these days results in a greater teenage rebellion

You have to remember that today's advances in diabetes care mean a lot more injections and blood tests. Which to anyone is overwhelming but teenagers it would be even worse. How many teens actually want to see their results good or bad in black and white in front of them? Thus compliance would be an issue. Also the medical peeps have more awareness and can act a lot sooner so some admissions can be just a precaution.

Saying that have you any stats to show that there are more admissions in this day and age?

In yours and my day it was have your jab/s and out the door. Wee test when you got up and before bed and set carbs for meals. That was diabetes care, ie, no worries

After 48 years on insulin I have never been admitted to hospital for any diabetes related condition

 

[mcdonagh47]

Non-compliance in teenage diabetics has always been a problem.
What I want to do is throw this open to discussion and debate as members may have been teens in any of the last seven decades, and others parents to a diabetic child/teen in that time. Observations and thoughts please.

it seems to have always been the case that teenage girls have been reluctant to inject too much insulin because they fear it will lead to weight gain. They are being inundated even more today with body images that are inappropriate and unachievable for most people ( e.g. stick insect models).

 

[DeusXM]

I don't know whether things have got worse or not. I would say there's always a high level of non-compliance in teenagers though and much of it might not be related to diabetes. I would imagine teens who are generally well-behaved and don't usually go off the rails are also less likely to be non-compliant in diabetes treatment.

As is being alluded to and tip-toed around, I would suggest (based on my own experiences and nothing else), the longer the parent is the 'responsible' one, the less likely it is that the teenager is going to be trustable on their own two feet. I'm also of the view that if a child is old enough to make a sensible lunch on their own, they're probably capable of managing their diabetes independently. Not being a parent, it's easy for me to say that.

I also think Sue has a point though. Although my experience is a little different from Sue's (when I was dxed we did have self-BG measurements and I was put on MDI within 6 months as it was clear I was already adjusting my doses according to what I was eating), the complications didn't quite seem as life and death as everyone makes out. Yes, it was clear that if I didn't look after myself I would go blind and lose a limb, and I could die in the night from a hypo, but my experience (according to my memory) was far more relaxed. I certainly don't think my parents imagined I was going to die in the night (or at least they did a very good job of keeping these emotionally affective concerns quiet). The basic message from my clinic was always as long as you keep your BG generally under control, you should be fine. I've only got 15 years under my d-belt but so far that seems to be holding true.

My own theory is that teenage rebellion in general is a way of asserting you can make your own choices. I suspect if a kid feels their life choices are limited because they have diabetes, they are far more likely to be non-compliant than the kid for whom diabetes is just a background part of life, rather than some beast that needs fighting 24/7.

 

[Ivy]

My non-compliance as a teenager was due to an eating disorder. I don't know about other people.

 

[Redkite]

Ragnar Hanas says that outcomes are better where parental involvement is maintained during adolescence. Presumably as a paediatric endocrinologist and as an academic he has plenty of evidence to base that on. "Don't hand over too soon" is his advice.

 

[bev]

Ragnar Hanas says that outcomes are better where parental involvement is maintained during adolescence. Presumably as a paediatric endocrinologist and as an academic he has plenty of evidence to base that on. "Don't hand over too soon" is his advice.

Hi Redkite,

Your quite right - at the FFL Conference we were told that after much research it is proven that the longer an adult stays engaged with a Type 1 adolescent the better outcome they have in terms of diabetes burnout and rebelling - especially as the frontal lobe isnt fully developed until they are 25 which means they are not fully capable of taking some risk-taking decisions that give a good outcome.😉Bev

 

[DeusXM]

especially as the frontal lobe isnt fully developed until they are 25 which means they are not fully capable of taking some risk-taking decisions that give a good outcome.

Actually, it's only after the 20s when the frontal lobe is fully developed...but by that logic, parents would be caring for their kids until their 30th birthday.

Ragnar Hanas says that outcomes are better where parental involvement is maintained during adolescence. Presumably as a paediatric endocrinologist and as an academic he has plenty of evidence to base that on. "Don't hand over too soon" is his advice.

I don't doubt this at all - did he specify what he meant by 'involvement'?

 

[Redkite]

I don't doubt this at all - did he specify what he meant by 'involvement'?

No, I guess that's a matter to be negotiated between the parents and the teen with advice from their team. Some individuals will be more mature than others at an earlier age. The goal is the same for everyone - a happy and confident young adult coming out the other side!

 

[bev]

Actually, it's only after the 20s when the frontal lobe is fully developed...but by that logic, parents would be caring for their kids until their 30th birthday.


I don't doubt this at all - did he specify what he meant by 'involvement'?

Isnt that what I said - the age of 25? If the frontal lobe is developed at 25 why would parents still be needed until they are 30 if they are then able to make decisions that involve risk-taking at 25? Confused.

 

[StephenM]

When I started this thread yesterday it was my hope and intention that it might provide help and information for those whose children are approaching or are in their teens. However, as seems to be the case to often these days people start taking things personally or bowling curved balls! The aspect of over rigid parental control was a suggestion for discussion not a statement of fact. There are studies that have shown that, for instance, children are introduced to small amounts of alcohol during family meals (at say 14 y.o.) are less likely to have issues with the use of alcohol a few years later.

Teenage non-compliance is a problem that has been the subject of at least one TV documentary and a number of newspaper and learned articles. The problem was again highlighted in the post on ?diabulima? yesterday. Eating disorders are more common amongst teenage diabetics, particular females, than non-diabetics. The increase in hospital admissions is somewhat anecdotal but born out in what a friend told me the other day. He belongs to a Patient?s Group. The senior GP of the practice (who never wants to retire) holds traditional values to care and is very much against the Monday ? Friday, 9:00 ? 17:00 attitude prevalent in many GP practices and NHS services. As such he is heavily involved in out-of-hours cover both at the patient?s home and at a local hospital. In a recent meeting non-compliance came up as one member was having severe problems with his son who had been admitted to A&E three times in six months. The GP said that his impression there had been a definite increase of people arriving in A&E as a result of non-compliance whereas when he was younger they often admitted youngsters to hospital due to loss of control and, sometimes, DKA as they did not have BG monitoring or MDI then. These days a person may be discharged from hospital direct from A&E whereas previously it was not uncommon to spend a few days on the ward.

So please can we discuss the issue of non-compliance and ways of addressing it?

 

[Lauras87]

When I was diagnosed at 15, I was admitted & the staff didn't know what to do with me as there was no DSN's on a Sunday so was dumped on mixed insulin 2 times a day & I was compliant - I just didn't know what I was doing!
The second time I was admitted was down to the fact my consultant thought I was T2 & took me off my insulin - again not my fault.

And I'd love to do what some teenagers do & not take their insulin but my mum deserves better than finding me in a bad way.

You can't address the issue unless you are going through it yourself & you can't force people to do things against their will even if it will keep them alive.

So unless all parents get power of attorney over their child's body, there will be more statistics.

 

[StephenM]

When I was diagnosed at 15, I was admitted & the staff didn't know what to do with me as there was no DSN's on a Sunday so was dumped on mixed insulin 2 times a day & I was compliant - I just didn't know what I was doing!
The second time I was admitted was down to the fact my consultant thought I was T2 & took me off my insulin - again not my fault.

And I'd love to do what some teenagers do & not take their insulin but my mum deserves better than finding me in a bad way.

You can't address the issue unless you are going through it yourself & you can't force people to do things against their will even if it will keep them alive.

So unless all parents get power of attorney over their child's body, there will be more statistics.

I like many others on this forum have been a teenage diabetic - you do not have to be going through your teens now to understand issues such as feelings of isolation and peer pressure. The idea of a discussion is to get ideas on how people can be helped through this period with minimal impact on their health.

Sorry to hear that you have encountered incompetent NHS staff. I had issues when one (former for me) consultant decreed that no one should be on animal insulin these days.

 

[Lauras87]

I like many others on this forum have been a teenage diabetic - you do not have to be going through your teens now to understand issues such as feelings of isolation and peer pressure. The idea of a discussion is to get ideas on how people can be helped through this period with minimal impact on their health.

Sorry to hear that you have encountered incompetent NHS staff. I had issues when one (former for me) consultant decreed that no one should be on animal insulin these days.

I honestly don't see how you can make them inject if they don't want to.
I meant that & sorry if this comes out wrong but you are maybe in your later years. Your teens will have been different to mine, I was rejected by friends & was pressured to be normal instead of the insulin pen wielding person I am.

As long as its insulin I don't see the problem with it being animal. I'd read that those on synthetic insulin get put on animal insulin in later life, I don't know if that's true.

 

[bev]

Alex is more than compliant - so no worries there - but interested to know what data you have that shows teenage non-compliance is on the increase in Type 1 diabetics?

 

[AJLang]

Hi Laura

Different people have different experiences with animal and synthetic insulins. I know at least one long- standing diabetic on this site who gets on great with animal insulin. However I found that it was the best thing ever when I went onto synthetic insulin, especially with regard to hypo awareness. Personally I would never want to be put back onto animal insulin. Also I think us "oldies" can still remember our teenage years with diabetes very well, it wasn't easy🙂