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Diabetes Education and Psychology
Dr Lisa Engel is a Health Psychologist and Diabetes Educator. She has worked with people with diabetes for over 20 years and has a practice in Sandringham and South Yarra (in Melbourne, Victoria). You can see more about her on http://t1dn.org.au which is a fantastic Australian website for young adults with type 1 diabetes.
Diabetes and psychology
Finding a psychologist who understands the unique challenges posed by living life with type 1 diabetes can assist people to recover quickly from setbacks and prevent deterioration in their mental and physical health.
My job as a psychologist does not involve the nuts and bolts of blood glucose management. That role is filled by other health professionals. Rather, my work involves collaboratively working with a person to understand past and present issues that prevent them from achieving their diabetes goals, treating any psychological problems such as anxiety and depression, eating problems and sleep difficulties to name a few.
The most common reason for someone with diabetes coming to see me is diabetes burnout. This mood state involves feeling overwhelmed with the demands of diabetes self-care, feeling scared about getting off-track with diabetes management and worrying about living with complications in the future.
Practices that build resilience such as learning to have a relationship with difficult thoughts and feelings rather than being identified or fused with these internal phenomena can improve a person’s mood fairly quickly. Acceptance strategies can assist clients to understand they are much more than their diabetes. Whilst the demands of diabetes are relentless, psychological therapy can help a person put them into perspective. Rather than becoming overwhelmed, a diabetes self-care regimen is seen as being a small part of a rich, full and meaningful life, enabling a person to cultivate a non-judgemental attentiveness to their lived experience of diabetes.
Over time, continued efforts to build resilience by gaining mastery over the mind can have a profound impact, resulting in actual changes in the structures of the cerebral cortex. Research using MRI scans have shown increased activity in the brain correlated with reduced anxiety and depression and increased pain tolerance.
This is a short video about supporting someone with depression which may help you if you are depressed or may help the people who are supporting you to understand.
Burnout is not the same thing as depression. It’s when diabetes just feels overwhelming, things are not going well, you’re fed up / frustrated / irritable / etc etc etc
William H. Polonsky has written a great book called Diabetes Burnout and it’s worth reading this. He also has lots of short clips on You Tube (just search by his name) and his website is also worth a look: http://behavioraldiabetesinstitute.org
So if you are feeling burned have a go at the PAID Questionnaire in the section of the website (PAID = problem areas in diabetes, sadly doesn’t involve payment!). This comes from the Joslin Centre in Boston, USA which is a great centre for diabetes management, research and treatment.
Do the questionnaire, print it off and take it to your next diabetes appointment, either with your nurse or doctor. You may be surprised at your responses and it may help break through some of the negative stuff you are dealing with.
Polonsky also recommends:
- Give yourself a break instead of beating yourself up when things go wrong
- Be honest with yourself and use positive self talk
- Find support that is encouraging for you
- Identify barriers to your management of your diabetes
- Make a plan and stick to it each dayDIABETES SUPPORT – HOW TO GIVE AND RECEIVE IT!
HOW TO GIVE AND RECEIVE IT!
Ask for help, there are lots of people happy to help (family, friends, diabetes nurse, doctor, websites, peer support, online communities, blogs…)
- like your friend for who they are
- read the notes in Diabetes Food Police
- read the notes in what is diabetes so you know stuff that’s true about it
- support them when they are hypo / sick / drunk especially if they ask for help
- call 111 if they collapse on you – better to be red-faced than sorry if they don’t really need the ambulance
- check on them the morning after the night before especially if you are in a hostel or a flat and they had been drinking and dancing
- judge, you don’t have diabetes, it’s 24/7 for your friend and they get tired of it
- turn in to the Diabetes Police (food, injections, tests, exercise etc)m
- make jokes about their behaviour when they are seriously hypo, they won’t remember and it’s potentially embarrassing
PARENTS – IT’S THEIR DIABETES NOT YOURS!
- stay in the background during the teen years
- keep up to date with diabetes information, it changes a lot
- negotiate “catch up time” with your teen and make it like a “business meeting” checking the blood sugars for the last week or so and making any adjustments. This is not a nagging time if they haven’t tested, have missed some insulin or generally not taken care of their diabetes
- accompany them to diabetes clinic but let them go in on their own and you come in for the last 5-10 minutes
- let them ask and answer questions in the diabetes clinic
- offer good support especially if they are sad, unwell, frustrated, fed up
- have someone outside of the diabetes circle that you can vent to / talk to /cry with
- prepare your teen for leaving home and independence – it will happen!*check out websites for parents – http://behavioraldiabetesinstitute.org has Diabetes Etiquette for Parents of Teens, some videos, a questionnaire for parents and other support things; www.childrenwithdiabetes.com also has lots of parent support ideas and practical help
- baby them
- pretend their diabetes isn’t important; they live with it 24/7 and research shows that parents who stay involved at whatever level can be negotiated between the teen and the parent, the teen will do better with their diabetes management
- ask them what their blood sugar is unless it is business meeting time
- blame them – help to fix the problem not the blame!
THE FOLLOWING IS AN ARTICLE FROM DIABETES NZ MAGAZINE, SUMMER 2012. FIRST PUBLISHED IN DIABETES MAGAZINE (SUMMER 2012) SEE WWW.DIABETES.ORG.NZ TO SUBSCRIBE.
The prospect of a teenager leaving home to live on their own for the first time is stressful for many parents. But there are things you can do to help the transition go smoothly, as diabetes nurse specialist Kirsty Newton explains.
Leaving home is a time of transition – for the teen as they anticipate independent living, and for the parents as they learn to let go. Parents whose children were diagnosed with diabetes at a young age can find this transition period hard as their teen’s diabetes management has become an extension of their own lives.
Negotiating the transfer of diabetes knowledge, responsibility and management to your teenage child can be a difficult experience for everyone, but it must be done if the teen is to be successful and independent.
The literature shows that teens whose parents have an arms-length supporting role do better long term. How much support has to be negotiated between the teen and parents.
Establish good habits
The time of transition is an active process in that teens should be self testing, giving insulin and making decisions about managing high or low blood glucose levels.
Teenagers must also learn to keep to the management regime, to delay or prevent complications in the future. This can be a difficult concept for an age group that lives in the present and who may consider themselves ‘bullet proof’ and therefore not vulnerable to the future complications of diabetes, even though they know about them.
One of the significant issues in diabetes management in this age group is the random approach many of them have towards insulin injections and testing. Good habits established in early to mid teens carry on into adulthood, along with the benefits of good control which are long lasting. Sadly the reverse is also true.
There are three aspects of managing to live with a chronic condition – choices, control and empowerment. Empowering your teen (see side panel) will enable them to develop the capacity to take responsibility for their diabetes.
Disempowerment can lead to them feeling overwhelmed by the responsibility.
Watch out for worrying signs
Anxiety and depression are common among teens/young adults with diabetes. Suddenly they have a lot of things on their plates, such as independent living, adjusting to living with peers and possibly engaging in some risky behaviours (alcohol, drugs, sexual activity).
Some may struggle to manage their academic workload. There is also the issue of accessing health services, managing prescriptions, hypos, hypers and sick days without the usual support of family and their usual diabetes team.
Keep an eye out for the warning signs of anxiety and depression. These include: Sleep disturbances, poor concentration, irritability, feelings of hopelessness, anxiety attacks, self medicating (eg alcohol and drugs), not taking their insulin regularly, self harming/cutting, social isolation, failing grades/missing classes.
There are good support services available for teens/young adults who need some help and direction. If they are at university or other institution there will be a student health service with links to counselling and student support services. If they are working there is often the option of the Employee Assistance Programme or counselling through their GP service. The main thing to ensure for any teen with diabetes leaving home and living somewhere else is that they engage with some kind of health service.
My best advice for parents is to prepare for the departure of their teen well in advance. Make sure they know how to manage their diabetes
As a diabetes nurse specialist working with teens and young adults, I have found over the years that there are basically three groups of teens with Type 1 diabetes.
- There are those who leave home with reasonably good diabetes management skills. They may have their ups and downs as everyone does but they have accepted their diabetes and are well prepared for life after school and independent living.
- There are those who have never really accepted their diabetes, find their management difficult and living away from home and studying or working puts them under a lot of pressure which doesn’t help their diabetes control.
- There are those who have never taken on the responsibility for their diabetes management, still need to rely on a lot of support from home and often struggle with anxiety and depression.
Plan with them, well in advance of their departure date.Throughout adolescence, encourage them to take on more responsibility for diabetes management – for
Throughout adolescence, encourage them to take on more responsibility for diabetes management – for example testing, insulin doses, carb counting, safety in exercise, stress management, sick day management.Get them to attend clinic appointments on their own; join them for the last five to 10 minutes.
Get them to attend clinic appointments on their own; join them for the last five to 10 minutes.
Promote resilience! Give them tasks to do such as taking their script to the chemist and learning to manage repeats.
Teach them how to cook and shop.
Teach them to manage money.
Claim a disability allowance (if a student, they get this through Study Link).
Make sure they are referred to the diabetes service in the place they are going to (your current diabetes service should do this).
Get them to sign up with a GP near their new home – research possible options that may have good diabetes awareness, for example youth one-stop shops, medical centre or university health service.
Ask your diabetes nurse educator for handouts on alcohol, sick days, physical activity, drugs and smoking.
Talk to your teen about safe sex, safety with alcohol and other behaviours that may impact on their diabetes. Prepare with them and plan to support them from a distance. But don’t over-manage them. If you find you are doing so, ask yourself ‘Whose diabetes is it?”
Risk taking is a normal part of adolescence. Talking to your child about these risks can help mitigate the dangers.
Make sure they know the most common reasons for hospital admission, which are:
- too much alcohol
- random use and under-dosing of insulin
- not managing sick days.
The two main messages to get across to your teenager are:
- they must take their insulin and
- they must treat hypos correctly
Kirsty Newton works for Capital and Coast District Health Board as a Diabetes Nurse Specialist with teenagers and young adults.