As you know, Future Generation Australia (ASX: FGX) supports youth at risk. Apart from the obvious medical risks, what other risks are children with diabetes exposed to?
Quite often, a child living with Type 1 diabetes will be the only kid at their school who has it, so they can have that feeling of “I’m different” or “I don’t fit in”. They do blood glucose checks and insulin injections; they are at risk of low blood sugar when they participate in physical activity; and sadly I have heard of children being left out of celebrations like the classroom birthday cake – and all of this can make them feel left out and isolated. The DiaBuddies Program, which Future Generation Australia funds, is designed to connect kids who are living with Type 1 diabetes, so that they have a support network. We get these children and their families together in a fun, relaxed way. The aim is that the social connections they form will improve their mental health and diabetes management as they move into adulthood.
Is there a link between diabetes and poor mental health?
Yes, absolutely. There is a significantly increased risk of mental health conditions, like anxiety and depression, and a hugely increased risk of eating disorders. That’s what we are trying to circumvent by offering a space for these kids to formulate friendships with others who are going through the same thing.
Can you give me a bit of history about the DiaBuddies Program and what it involves?
DiaBuddies evolved out of Jelly Bean Picnics, which were based on a similar concept, but on a much smaller scale. We invite kids who have Type 1, along with their parents and siblings, to an event in their local area. These events used to take place in a park setting, where we asked people to bring along a rug and a picnic. But they have since evolved into big-ticket events at trampoline parks, inflatable play centres, outdoor ropes courses, zoos, water parks and the like. It gives the kids and their families living with Type 1 something to really look forward to, as well as the opportunity to meet other families going through the same experience.
How often do these events take place – and do they happen across Australia?
Diabetes Australia recently unified, so the states now under its umbrella are Queensland, New South Wales, the ACT and Tasmania. This means the program has become a bit more of a national program; prior to unification, DiaBuddies was only run out of New South Wales. We had our first DiaBuddies Day in Tasmania this year, at Hollybank Treetops Adventures, which was great. In general, we have five DiaBuddies events per year in Queensland and NSW, and one in Tasmania and the ACT. We try to choose a mix of metro and regional or remote locations, depending on where families live.
What does the data tell you about the impact DiaBuddies has on these children and their families?
The key impact is that kids feel better about living with diabetes. Other impacts include them having an increased sense of belonging; being more engaged in learning, both about diabetes and in the school setting; and increased confidence in being able to self-manage their diabetes. There is a tricky transition period, as children move into the teenage years. Up until that point, their parents have been really involved in managing their diabetes, getting up overnight to check on blood glucose levels, getting their food organised and so on. As they become teenagers and their sense of independence grows, it is really important for them to interact with kids their own age or older who are living with Type 1. They tend to learn a lot from those interactions and it increases their self-confidence and self-efficacy in managing their own diabetes from that point on.
Presumably, it is also difficult for parents to let go of the management at this point, so sharing that experience with other families must help?
Exactly. The parents report a reduced sense of isolation, an increased sense of wellbeing, improved family relationships, lower stress levels, less anxiety, a better home environment, and greater hope for their child.
We also ran an online program this year for parents and carers, in which we talked about the importance of looking after their mental health because otherwise that would inevitably impact on their child’s mental health. The initial data that we collected at the start of the program was that around 46% of parents or carers of children with Type 1 had either severe or extremely severe depression, anxiety or stress levels. During the program, the parents and carers got to connect with a specialist diabetes social worker over 3-6 personalised sessions, talking about the types of problems that they have within their family and getting counselling for that. We’ve had really great outcomes for that program.
Presumably during COVID, you had to move a lot of your face-to-face interactions online. Have you persisted with that?
Yes, we have kept some online components. During the COVID years, we were running 12 online sessions per year, and we’ve now reduced that number to six. Three of those sessions are aimed at children and the other three are aimed at parents. What we have found is that these sessions actually provide a better opportunity to educate people than the face-to-face sessions, interactions and forming connections with the diabetes community in an informal setting.
We also run a closed diabetes support group on Facebook, which is for parents of children with Type 1. We put educational information on the site, as well as photographs or details about events. The page also hosts a group discussion, so if parents have questions about medications or pumps or any aspect of diabetes management, they can ask the community a question. That group has grown by 30 per cent this year and we’ve now got close to 1000 members.
You recently ran a leadership program in conjunction with Youth Opportunities which, coincidentally, is one of Future Generation Global’s (ASX: FGG) not-for-profit partners. Can you tell us a bit about the program?
The DiaBuddies Youth Leadership Program came about because we wanted to increase the leadership skills of people aged between 15 and 24 who are living with Type 1. The aim is to create diabetes youth leaders who can serve as inspirational role models for younger kids. There is a lot of research into peer-assisted learning techniques and the benefits of those for children. This is backed up by the anecdotal feedback that we receive from parents at the DiaBuddies days and also from the DiaBuddies online sessions, which confirms that younger kids tend to look up to and learn from older role models who aren’t their parents. So, the idea is to produce these youth leaders, who can come along to DiaBuddies days in a mentor capacity and speak about their diabetes journey, what their goals are, what they’re aiming for, and their hot tips for kids living with Type 1.
How many people were involved in the leadership program?
There were 15 from all over the country – Tasmania, the ACT, New South Wales and Queensland. And the 12-week program involved online content that they went through at their own pace, group workshops, which they really enjoyed, and individual coaching sessions.
What were the impact outcomes for the participants?
Everyone took something different out of the program, but most people said they improved their communication skills, their ability to negotiate, and their time management skills. If I had to pick one overarching outcome from the program, it would have to be goal setting. The participants worked closely with a personal coach to set goals for themselves and devise ways to achieve those goals. These goals were personal to each individual; some were as big as going to university to become a doctor, while others were quite modest.
Why is it important for children with diabetes to gain the leadership skills necessary to advocate for themselves?
Because Type 1 diabetes is not as common or as well understood as Type 2 diabetes. A lot of people tend to lump Type 1 and Type 2 diabetes into the same category, whereas they are completely different conditions which require different management strategies.
Type 1 requires you to be aware of every decision you are making around medications, physical activity and food – 24 hours a day, seven days a week. It’s a lot to live with. So, children do need to develop the skills to advocate for themselves to make sure that they are able to do things that the rest of us just take for granted. Taking catching a flight, for example. They need to have their medication with them, they need to make sure that food comes to them at a time that’s appropriate for them and so on.
One of the youth leaders told us about how he wanted to join the army. There is really no reason why he shouldn’t be able to do that, but he has been knocked back several times. So, he now has to advocate for himself – to explain why he should be allowed to join the army and also to outline all the steps he would need to take in order to do that job effectively.
Finally, what does the funding from Future Generation Australia mean to you at the DiaBuddies program?
It is imperative for us. Without it, we wouldn’t be able to run the DiaBuddies days or the DiaBuddies online program. That would mean that families and children living with Type 1 wouldn’t have those opportunities to connect and create meaningful friendships, to improve their mental health and to learn how to manage their diabetes effectively.
For more information, visit the Diabetes Australia website.