Emotional & Mental Wellbeing In Children With Diabetes

Key points about emotional and mental wellbeing in children with diabetes

• having diabetes and managing it on a daily basis is stressful for tamariki, rangatahi, and their families
• distress about diabetes and mental health concerns are common in tamariki and rangatahi with diabetes
• support is available to help you and your whānau

Why is diabetes stressful for my child?

Having diabetes means adding a range of daily behaviours into an already busy lifestyle. Having to check glucose levels, being aware of food intake and taking insulin every day can be overwhelming. When glucose levels do not respond the way they are supposed to' this can be frustrating, stressful, and make a person despondent and resentful. This can also cause arguments and conflict between parents and tamariki because everyone is trying to find an answer to 'why is your glucose level so high or so low?'

Having to check glucose levels, being aware of food intake and taking insulin or medicines every day can be overwhelming.

Motivation for managing diabetes can come and go. At different times of the diabetes journey, people's motivation to keep glucose levels in target range can go up and down. 'Diabetes burnout' is now a recognised state - a person grows tired of managing their diabetes and gives up on carrying out diabetes management tasks. This can include monitoring and recording glucose levels, receiving data from technology, counting carbohydrates, and taking insulin or medicines. Diabetes burnout can also lead to depression.

What emotional responses can I expect to my child's diagnosis of diabetes?

Your child's emotional response

Your child will have their own emotional reaction to their diagnosis of diabetes. They will feel overwhelmed and fearful of the future. Hospitals are strange places - they don't have the comforts and familiarity of home. Your child may experience levels of physical discomfort as part of their diagnosis and initial treatment plan.

Once you are home, you might find that they become worried about other areas of their life and see a drop in their confidence. There may also be extra anxieties or concerns about how they are going to manage diabetes alongside their schooling and other activities. 

The emotional response of your whānau

Siblings will also feel worried about their brother or sister with diabetes. They are likely to see you upset and are not sure how to react. You will obviously need to focus your attention on learning about diabetes, and they, understandably, might feel left out. Often older siblings react by trying to become too involved. They may end up taking on too much responsibility for their sibling's diabetes management. Other relatives and friends will also feel concerned but might not know how best to help.

Your emotional response as a parent

It is normal as a parent to feel overwhelmed and fearful when your child is diagnosed with type I diabetes. Feeling overwhelmed by diabetes is not just for the person who has diabetes. The burden of a child's diabetes falls mainly on to a parent.

Everyone is different, but these are some ways that people deal with significant events like a diabetes diagnosis.

Seeking comfort

People often seek comfort. They eat more, drink alcohol to excess, misuse drugs or throw themselves into work, and try and block out difficult feelings. They may say "it will be fine".

Control

Others respond by trying to control every aspect of their lives, to protect themselves from further frightening experiences. They become very rigid, keep the house extremely tidy, avoid any new experiences, stay at home and become much less social. This may result in you thinking about resigning from your job, home-schooling, needing to be by your child at all times.

As a parent, it's important that you look after yourself - you need to strengthen yourself so you can be strong for your child.

Looking after yourself

So, as a parent it is very important that you look after yourself as well. This is often easier said than done, because a parent's focus is often on their child. But, you need to strengthen yourself so you can be strong for your child. It's important to have support systems and share the emotional burden that you are carrying.

Check out a wellbeing guide for parents and carers of children and teens living with type 1 diabetes: "If you're okay, they're okay", (JDRF, Australia). (PDF, 7.87 MB).

How can I help my child with diabetes?

• make sure you share diabetes management tasks with your child or young person (depending on their age and stage)
• check in to see how they are doing with all that is expected of them
• make sure your expectations are suitable for the age and stage of your child
• let your child know it is OK not to like diabetes
• focus on the behaviours that a person is able to do (checking glucose levels, taking insulin or medicines) rather than the 'numbers' (glucose level, time in range, HbA1c)
• don't punish your child for high or low numbers - if you put consequences in place, put them in for the behaviours that your child has control over
• give attention to things other than diabetes - ask about something other than diabetes
• spend special one-on-one time with your other children to prevent them from feeling left out - although this is never a parent's intention, it is common when faced with a chronic illness
• advise your child's diabetes team so that they can talk to your child on their own to see how they can help

If you have concerns about your child, it is important to start talking to other adults that care for your child. Ask relatives and friends if they have noticed any changes in their behaviour. Have a quiet word with your child's teacher or other staff members who help with your child's diabetes care.

Most importantly, talk with your child, ask them how they are feeling, share with them that you can see things are difficult and reassure them that there is help and that they are not alone.

What are the signs my child with diabetes may be emotionally distressed?

Once your child is diagnosed with diabetes, you will need a clear understanding of your new responsibilities and your child's needs and capabilities at each developmental stage of their life.

You know your child best of all - one of your key roles is to notice when they are not doing so well emotionally.

There are some signs that indicate your child may be emotionally distressed.

For under 5s

• temper tantrums with finger pricks, injections or site changes
• regressive behaviours, such as a return to bed wetting
• refusing to eat or overeating
• hair pulling
• nightmares and needing comfort at night

For children and teens

• missing injections
• not checking their glucose levels
• hidden food wrappers or missing food from the pantry
• removing their medical alert bracelet
• changes in HbA1c or TIR that don't match with what they say they are doing
• changes in their friendships or withdrawing socially
• not spending time with family and isolating in their room
• being angry - often a sign that a child is feeling very anxious
• voicing concerns about feeling different from everyone else
• saying they 'don't care anymore'
• having no interest in their future
• engaging in risky behavious (like drinking alcohol, using illegal drugs, being sexually active, skipping school, bullying or being bullied)

Where do I go to for help for my child with diabetes?

Some children will need to have support from professionals. If your child's behaviours or emotional responses are severe (above your ability to manage) or are ongoing (last for longer than a couple of weeks), your child may need extra help to cope. Help from specialist services may be more likely for children or young people who have had previous mental health difficulties.

If you are concerned, contact your local diabetes team or family doctor. They will be able to advise you what support is recommended and available.

Check helplines and mental health support services

See some online tools to support mental wellbeing

What are some of the mental health concerns in children with diabetes?

Talk with your child, ask them how they are feeling and reassure them that there is help and that they are not alone.

Diabetes is a psychologically challenging condition. It's boring, relentless, invasive and even painful at times. Managing diabetes will continue to have an emotional burden throughout your child's life.

Symptoms of anxiety and depression

Research shows that symptoms of anxiety and depression are common in children and teens with diabetes. Mental health concerns can interfere with management and treatment of diabetes. They can also impact on the functioning of the whole whānau. If a person is depressed or anxious, they can get into patterns of behaviour (for example, avoiding certain situations). These patterns might make them feel a bit better in the short term but actually can make things harder in the longer term. For example, a child or teen may avoid school or activities because of worry. The worry goes down in the short-term but the avoidance makes it harder to go back, and the worry continues.

Feeling controlled by diabetes 

It is likely that your child will feel different from their peers. They can find the practicalities of diabetes management annoying and distracting and get frustrated and disillusioned when their glucose levels are out of range. It is common for both children and teens to feel controlled by their diabetes and find ways to fight against it. This can include secretive eating, not injecting insulin or checking their glucose levels. They might also try to manage your feelings, perhaps telling you false glucose levels, so not to worry you.

Higher rates of 3 mental health disorders

People with diabetes have higher rates of 3 mental health disorders than people without diabetes - depression, anxiety, and eating disorders.

Is my child with diabetes at risk of depression and anxiety?

It is important to know that anxiety and depression can be overlooked in people with diabetes. This is because the physical signs of depression and anxiety can be the same as that of hyperglycaemia and hypoglycaemia. For this reason, it is important to look at the behavioural and thinking aspects of a person's wellbeing.

Things that may indicate depression are:

• changes to sleeping and eating patterns
• whether your child or teen is not wanting to engage in activities that they used to enjoy
• any comments about not liking themselves or a sense of hopelessness about the future for themselves

Signs that may indicate significant anxiety are unrealistic worry when glucose levels are 'OK'. Hypoglycaemia can 'look like' anxiety symptoms (such as increased heart rate, sweating, temperature changes, unclear thinking). It's important to first assume it is a 'hypo'. Then if not, consider whether the signs are anxiety-related.

Find out more about depression

See the information about anxiety

Expressing suicidal thoughts and plans

It is normal for children and teens to feel despair at times. Expressing thoughts of wanting to die often means that they want to change their life (for example, not have diabetes) rather than that they want to end their life. But, suicidal thoughts and any evidence of cutting (usually on arms and upper legs) and other injuries (such as burns), are evidence that your child is significantly distressed.

It is always important to remember that children and teens with diabetes have access to insulin which can cause significant harm if used in the wrong way. Take suicidal thoughts or evidence of self harm very seriously. Please contact either your family doctor or your diabetes team.

Find out about self harm

Is my child at risk of an eating disorder?

Eating disorders are more common in people with diabetes. This is often called 'diabulimia'. One reason for this is diabetes can make a person focus on their weight, body, and food intake. While eating disorders are more common in females, they can also affect males. Restricting food intake, increasing exercise, and manipulating insulin doses, might be a way for young people with diabetes to manage their weight and body shape.

Key signs to look out for regarding disordered eating are:

• repeated episodes of diabetic ketoacidosis
• rapid weight loss
• refusing to eat
• secretive diabetes management tasks

Due to the connection between food intake and glucose control, it is important to work closely with your diabetes team if there are weight or body image concerns. Your family doctor can also help to assess whether your child needs to see specialist services.

See a fact sheet on diabetes and disordered eating from the National Diabetes Services Scheme (NDSS), Australia (PDF, 676KB).

Find out more about diabulimia in children and teens from Change Creates Change, Canada.

Watch a video about the red flags of diabulimia - diabetes and bulumia from Change Creates Change, Canada

Diabetes - young people's voices

Watch a video from Beyond Type 1, US. Young people talk about what diabetes is like for them. 

See more KidsHealth content on diabetes

Check out KidsHealth's section on diabetes