Technology, teenagers and diabetes distress

Dr Louise Johnson explains the difficulties experienced by teenagers with diabetes, including diabetes distress, and how sharing on social media helps them.


Diabetes is currently still a chronic disease with continuous treatment and lifestyle adjustments. The good news though is that rapid technology improvements will power a paradigm shift. For this reason, in the future our views should change. But until such time, we must still regard diabetes as a chronic metabolic disturbance.

19-year peak

Adolescent years are the most challenging time in life. Not only are there physical changes but also emotional changes. In a teenager with diabetes this will be the most difficult time to control glucose. The reason is due to the interaction of all the hormones that are also affecting diabetes. These hormones are growth hormones, oestrogen, testosterone and cortisol. On a positive note, it’s worth mentioning this difficult period peaks at 19 years; thereafter it should be a lot easier.

Study results

In a study (Tanenbaum ML et. al) on diabetes and technology (social media); an analysis of teenage patients in a certain population was used.  Looking at the amount of participants that posted on social media and the reasons behind it, it was found that 105 participants (51,5%) posted on their health in the previous six months. Of these, 80 (76,2%) posted about mood and 62 (57,1%) posted on wellness and prevention, while 44 (41,9%) posted on acute complications and only 13 (12,4%) posted on chronic medical conditions. Only 10 (9,5%) posted about their sexual health.

The reasons teenagers were posting were:
• To connect with others with similar conditions (43,8%),
• Seeking advice (41%),
• Looking for support (31.4%),
• Share their health issues (26,7%),
• Thought it was fun (22.9%),
• Wanted to search for additional treatment (13.3%).

The social media apps that the groups of teenagers used most were:

  • YouTube
  • Instagram
  • Snapchat
  • Facebook
  • Twitter

This interaction (in this case by sharing about their health) was shown to improve their awareness about their disease. The teenagers reacted to social media comments by testing more, eating correctly, taking insulin more regularly and exercising more, etc. Overall, the use of these social media platforms by teens with Type 1 diabetes helped their HbA1c decrease by 0,4% .The important point is interaction with someone (even unknown persons) improves health.

The study identified four types of people:

  • The D-embracer endorses barriers and overcomes them. They have a high uptake on devices and have low diabetes distress. The target for this group is only maintenance on information.
  • The Wary Wearer has numerous barriers and is resistant against technologies (insulin pumps, continuous glucose monitoring (CGMs), etc). They also suffer from a high amount of diabetes distress. To target this person, education and problem-solving is important.
  • The Data Minimalist has an average tech attitude and doesn’t want more info. They have an aversion against CGMs and have low diabetes distress. To target this group, education and specifically technology problem-solving is needed.
  • The Free Ranger endorses few barriers. They have a negative attitude against technology and do not like new devices. They also have above average diabetes distress and worry about low blood sugar. The target treatment would be to provide a pump or CGM device as a temporary solution and teach them problem-solving.

Change in treatment for adolescence years is needed

One of the points that was raised in this study was the fact that change in treatment is needed in adolescence years. Most teens feel that they want to take control of their diabetes. It is important for parents to realise this and thus hand over the care to them. This can be done in different ways. One example is a family meeting, once or twice a week, to discuss difficulties surrounding diabetes.

DiabetesWise.org is a good website to help you determine if your device is still compatible for your unique lifestyle. This information will be available soon. In the meantime, patients can register.

Essential points for teenager with diabetes to remember:

  • Blood glucose is just a number.
  • Any number is a good number because it is data and data is good. There is no such thing as a bad number.
  • It is not you that isn’t compliant. It’s your pancreas that isn’t producing insulin. Therefore, your pancreas is not compliant.
  • Your blood sugar numbers are not bad because you are bad but rather because your pancreas is lazy and not performing.
  • You can make a difference by substituting insulin to help your lazy pancreas.
  • Keep trying until you own it. For example, eat the same pizza (once a week) and adjust insulin until the two-hour after pizza glucose value is on target. Pizza does count as ‘wrong food’  but can be eaten if you inject accordingly (with insulin) to counteract the rising glucose.
  • It is essential that you have a good partnership with a friend, parent, or even your doctor. A partner is there to support you. A great partner will take time to learn about diabetes, buy healthy food, and even exercise with you. Moreover, they will gently remind you of your medication, they will understand and support your emotions. They will also respect your autonomy. What any partner should not do is: nag, argue, shame you when your glucose levels are high and they should never undermine your autonomy.

What is diabetes distress (DD)?

DD refers to the worries, concerns, fears, and threats that are associated with struggling with the demanding and progressive chronic disease – diabetes. In addition, the management, threats of complications and lack of leading a normal lifestyle are included in this mix.

DD is an expected response to having diabetes. It does not fall under psychopathology, nor is it viewed as a co-morbid disorder or condition. It is simply the emotional side of having diabetes.

Signs of DD

  • Feelings of weakness and hopelessness.
  • Excessive fear of hypos or complications.
  • Avoidance – Who me? Everything is fine!
  • Burnout because of all the management tasks.
  • Even those with excellent or good management can present with high DD. Not just those with poor management.
  • Anger and frustration with providers, distrust, hostility, and even no-show for appointments.

It is noteworthy to realise that DD has a high prevalence among both Type 1 and Type 2 diabetes. The values range from 35% to 42%. It does not disappear on its own and can become chronic, and needs treatment. DD is highly responsive to treatment.

One must bear in mind that it should be distinguished from depression.

Addressing DD

  • Focus on the change of medication or complications that may have appeared.
  • Talk to the patient about the new treatment.
  • Use of interactive groups led by an expert or psychologist.
  • Concentrate on the patient more than on the glucose numbers. It is important to be an active listener.
  • www.diabetesdistress.org is a useful website for additional information and assistance with diagnosis.

References:

Tanenbaum ML, Hanes SJ et. al. ‘Diabetes Device use in Adults with type 1 diabetes: Barrier to uptake and potential intervention targets.’ Diabetes Care 2017; 40: 1-7


 

Dr Louise Johnson

MEET OUR EXPERT


Dr Louise Johnson is a specialist physician passionate about diabetes and endocrinology. She enjoys helping people with diabetes live a full life with optimal quality. She is based in Pretoria in private practice.


Teenagers with diabetes tackling puberty

Rosemary Flynn helps us comprehend what children with diabetes encounter when they transition through puberty.


When children become teenagers, they go through a huge transition. They rapidly develop in all areas of their lives: physically, sexually, emotionally, mentally, and socially. As if that is not enough to negotiate, teenagers with diabetes have extra challenges to face during their puberty years.

Early puberty

In early puberty, insulin works together with growth hormones to enable normal growth. When the growth hormones get going, insulin resistance increases. So, it’s important for those with diabetes to ensure they have enough insulin to allow growth to proceed as normal.

With diabetes, the insulin levels depend on how well the teen manages their diabetes. Sufficient insulin is the key to reaching their normal final height. They also gain weight as their body grows into a more adult body. With self-image being of great importance to them at this stage, the rapid weight gain often makes them feel very self-conscious. One of the most important tasks of adolescence it to accept these dramatic physical changes as normal and develop a positive body image.

Sexuality

Teenagers develop a keen interest in the opposite sex during this time. Many teenagers become sexually active, and for the teen with diabetes, this presents extra risk. For girls, there is the risk of an unwanted pregnancy even if they take precautions. In all pregnancies, women have to keep their blood glucose levels as normal as possible before, during and after the pregnancy. This ensures the baby is protected from birth defects. Unplanned pregnancy puts the baby at high risk. For both boys and girls, information about their sexuality and advice about contraception should be given well before they need it.

Responsibility

Another development of adolescence is that they are able to start taking responsibility for their lives and their diabetes. Teaching children and adolescents to take up this responsibility is a parental task. If teenagers are never asked to be responsible, they will have a tremendous battle to take up the challenge of managing their own diabetes. They will always expect others to be responsible or alternately, they will neglect it. The teen will have to consciously make a choice to  take on the responsibility of diabetes. Some are resistant to this transition and may take longer to do so.” 

Changes in the brain

During puberty the brain is going through impressive intellectual changes. Knowledge increases in leaps and bounds and teenagers are able to absorb much more information. They can imagine ideas which are actual possibilities, and use these to reason with and solve real problems. Their ability to pay attention and concentrate increases a great deal and they can remember much more than before. All this development means they are ready to make a transition from a dependent child to a responsible teenager.

It is worthwhile for teens to remember that poor control of diabetes can have a negative effect on the developing brain and prevent it from developing fully. Maintaining good control will protect their intelligence and allow it to develop to its full potential.

Attitude

The teenager’s attitude towards their diabetes can be influenced by how they perceive the illness. If they see it as a life-threatening disease over which they have no control, they will have a sense of hopelessness. They will always feel like a victim and have a very negative attitude towards their diabetes.

If they understand that diabetes can be controlled and believe they can learn to manage it effectively, they can develop a positive attitude and feel empowered to participate in all the activities that other teens do. They then believe and see that they can also do well at school.

Social life

Teenagers’ social lives become very important to them. The idea of being different from their peers is very threatening. Especially in early adolescence when they are finding their place in social groups.

They may struggle to be open about their diabetes and try to conceal the testing and injecting from their peers. This may mean that they miss injections or eat whatever the others are eating, even if it has a bad effect on their blood glucose levels. Sadly, the resulting poor control can mean missing lots of school, or being hospitalised due to diabetic ketoacidosis. In turn, this removes them from their social environment, or when it leads to poor growth it reduces their self-image.

The quest for social acceptance may lead them to try risky behaviours, like smoking, drinking alcohol and having unprotected sex. Somehow, they have to find a balance between having a good time socially and remaining responsible for their diabetes care.

Many teens have successfully negotiated their puberty years and have developed a maturity which exceeds that of their peers. With lots of support and encouragement, they can all succeed if they can get their minds around the challenges they face.

Rosemary Flynn

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Rosemary Flynn is a clinical psychologist at the Centre for Diabetes in Johannesburg. She has worked with children, families and adults with diabetes for 24 years, enabling them to overcome their anxieties about their condition and to deal with the difficult events in their lives.