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A new resource for teens living with type 1 diabetes

July 06, 2022

We are excited to announce the launch of our brand new teen wellbeing guide, Testing Times, designed to help teenagers manage their type 1 diabetes (T1D) while staying on top of studying, socialising and the changes that come with transitioning into adulthood.

The guide was created with the knowledge and expertise of T1D healthcare clinicians. We chatted with two of the authors – diabetes social worker Simone Collins, and registered psychologist and mother of a teen living with T1D, Melanie Cullen – about the common challenges they’ve seen working with young people living with T1D, tips on how parents and teens living with the condition can maintain a healthy relationship, and why they decided to create this teen guide.

What drew you to work with children and families who live with T1D?

SIMONE: The impact of chronic illness on families is profound and managing a condition that is physically and mentally intrusive, is at best, exhausting. The opportunity to support families when they need it most, can never be underestimated.

MELANIE: I had always enjoyed working with young people and started out my career as a psychologist working with young people in Youth Health. I loved connecting and supporting young people through the many changes and challenges they faced throughout their teenage years. When my son was diagnosed with T1D when he was 2 years old, I saw an opportunity to work within a paediatric diabetes service.

When T1D becomes part of your life, often suddenly and without warning, the impact can be overwhelming to all, and I wanted to be able to support families through that process, normalise their emotions and help them adjust to their new normal

From your experiences working with children living with T1D, what are some common challenges you’ve seen specifically in teenagers managing this condition?

SIMONE: Adolescence is a time of change and many competing demands – life is exciting, interesting, and incredibly challenging for our young people. This period is like a constant tug of war between wanting to be independent, however, lacking the skills to pull it off.

Diabetes management requires skills that teenagers often don’t possess. They are developmentally hardwired to do what they want, what feels good and what is being done by their peers! Being responsible, prioritising their health, doing what they know they need to do and listening to their parents is incredibly difficult to pull off. This is the case for any adolescent – now imagine needing to also manage a chronic condition like T1D!

MELANIE: Young people, even those without T1D, need to learn skills to juggle the demands of their lives during adolescence. T1D management does require attention, and it can be difficult to work out how they can fit it all in.

Conflict with carers and parents can be common during this time for all young people. As young people with T1D pull away, seeking independence, issues with parents and carers can arise. How to balance the changing needs of both the parents and carers can be tricky.

How can living with a chronic condition like T1D impact a teen’s relationship with their parents/ carers? What is a tip you have for parents/ carers on maintaining a healthy relationship with their teen?

SIMONE: Adolescence, mistakes, and all, is an essential, intensive period of growth and skill development. However as a parent/ carer it can be incredibly difficult to watch and is often a time filled with fear and worry as your teen sidelines you and your advice. Living life can get in the way of their teen looking after their T1D.

My best tip would be to never underestimate the protective factor that is, ‘your relationship’ with your teen. Listen more than talk, reflect on your own adolescence and dig deep, find your empathy, and remember the power of validation. They are trying to find out who they truly are, their place in this world and their own way of managing a chronic condition that ‘they’ will carry through life, so be patient.

MELANIE: Teenagers and parents/carers can both experience burnout. Parents/carers often focus on long term impacts of T1D whereas young people can be more focused on the ‘here and now’ rather than the future and can feel invincible. This is all normal and essential to their development but also can be very stressful for parents and carers and can often result in conflict.

My best tip is to never take a  “do it yourself” approach when it comes to T1D management. Working together is key. It is the way that we support young people with T1D as they get older that changes rather than whether they are supported or not. Communicate with your teenager about how you can support them to make this time the easiest for you all. Let them know that it is a scary time for you too. They might just want you to make sure that their T1D supplies are always stocked, and you might want them to let you know when supplies are running low! The key is communication, but not conflict.

Melanie, as a parent to a teenager living with T1D, how do you support your child in managing their T1D, while balancing their need for more independence and freedom?

Since T1D joined our family so many years ago, I have always tried to focus on the mantra of “child first, diabetes second”. There can be a tendency to feel guilty, blame or use diabetes to influence parenting decisions, and while T1D needs to be considered in most situations, it is important to remember how you would parent without T1D in the picture.

What are your values and hopes for your child as they grow up? I have never wanted T1D to get in the way of my son living his best life, so we just look at what the situation is, and if it aligns with my parenting values, how do we then manage T1D within it. It may mean that there are a few more steps that need to be followed or plans made.

Forgetfulness is a common occurrence at this age as the teenage brain grows and develops. This can be hard when managing T1D tasks, so strategies to help support your child are helpful. As a parent, the balance between “nagging” and “supporting” can feel like a very fine line to your teenager, but try and come from a place of love and empathy and hopefully you can come up with a plan that works for you both.

What is the Teen Wellbeing Guide and why did you decide to create this resource?

SIMONE: This guide is first and foremost a mental health resource, supporting ongoing positive wellbeing in our teens. Our focus is on the challenging and ‘testing times’ that come with the final years of study and the difficult balance that is presented at this time.

This resource has been developed with the knowledge, support, and expertise of past and current Diabetes healthcare clinicians. Members of the Social Workers and Psychologists in Diabetes Network (SWAP) have worked, in collaboration with JDRF to produce this diabetes focused resource for our adolescent and young adult population. For me it has really been a labour of love and an opportunity to pour decades of knowledge and expertise into a resource that is designed to support our families.

MELANIE: The initial idea for this guide was to create a guide to support young people through the final years of school as this was a time of transition often identified by the social workers and psychologists.  However, over time it became evident that it needed to be a guide that supported the overall wellbeing of young people living with T1D as they transition through adolescence, including mental health support.

How do you hope this guide will benefit teenagers living with T1D along with their parents?

SIMONE: The hope is that this resource will start conversations, with young people, parents, and healthcare professionals. There is something for everyone to be found in the pages of this resource. It provides essential elements like validation, compassion and understanding, along with education, tips, and strategies. It speaks to young people and parents alike about the impact of stress, mental wellness, nutrition, exercise, and relationships on how well we balance life, study and T1D.

My hope is that this resource will resonate with families everywhere, and gently encourage the shift that is needed during adolescence to maintain strong, healthy relationships. While giving parents and healthcare professionals a glimpse into the hardships of balancing life and diabetes, for our teens in today’s world.

MELANIE: The hope is that this guide will provide some practical support for both teenagers and their families. While not all teenagers may be keen to sit down and read through the whole guide, hopefully it will be able to start conversations between parents and carers and their teenager. The guide is divided into sections so young people (and their families) are able to easily find support and information they are after.

Download your FREE teen wellbeing guide.