Parents of children with type 1 diabetes are patients too

Preserving the physical and mental health of young children with type 1 diabetes and their parents was the subject of a presentation at the American Diabetes Association 81st Scientific Sessions.

When type 1 diabetes is diagnosed in babies and young children, it comes with a set of challenges unique to that stage of life. Special attention needs paying to this age group and their parents, and this was addressed by Randi Streisand, Professor of Psychiatry and Behavioural Sciences at George Washington University School of Medicine and Health Sciences. 

Goals after diagnosis are to keep children physically healthy, she said, but also to address their emotional wellbeing and development, and ensure that that they’re not affected by having type 1 diabetes. As childhood is a period of rapid growth, focus of care is often on physiological aspects, but much is going on under the surface at the psychological level.

Parents describe caring for a young child with type 1 diabetes as more than a full-time job as they’re never off duty. They face challenges such as educating other caregivers when the child starts spending time outside the home, coping with unpredictable appetite habits and learning how blood glucose can influence behaviour – for example, what is a tantrum and what is a drop in glucose?

The strain puts them at increased risk of distress and depressive symptoms and Professor Streisand pointed out how important it is not to see the child as the only patient in the room – their caregivers are patients too. Significantly, parent distress, even at low levels, is a predictor of poor glycaemic outcomes in their child and Professor Streisand is a proponent of screening parents for mental health issues such as anxiety and depression so that the correct support can be provided.

She highlighted two studies. In the first, almost half of the parents of young children with type 1 diabetes reported depressive symptoms at two years post-diagnosis. This is not seen as often in parents of older kids so long after diagnosis, said Professor Streisand, but salient for younger children.

Another, the First STEPS study, assessed a stepped-care behavioural intervention to support parents of young children within two months of diagnosis. If parents didn’t meet targets set for mood and the child didn’t meet HbA1c targets in the first step of the intervention, the family would be moved up to the next step.

Step one was sessions with a parent coach; step two added in phone sessions with behavioural specialists from the research team, and step three added in a diabetes educator and clinical psychologist. Only about a third of participants met the targets in each step – i.e. two-thirds needed to be bumped up a step, showing that high levels of support are often needed.

Professor Streisand moved on to the techniques that can be discussed in clinic to help support both parents and children.

Firstly, she emphasised that the use of language is critical when talking about diabetes to young children. Parents should be encouraged to be matter of fact and use the technical words rather than a softened version – for example, diabetes and insulin (not medicine). They should also avoid the use of ‘good’ or ‘bad’ when it comes to glucose levels and use positive language and distraction during diabetes-related tasks rather than reassurance and shushing. This helps children to adjust better.

With regard to the technology, make the teaching and explanation fun and engaging. Children who start with continuous glucose monitoring (CGM) early and stay with it have better HbA1c so it’s important to start off positively.

When it comes to behavioural management strategies, it can be tempting to treat a child with type 1 diabetes differently to other children, but parents should be encouraged to treat them in the same way as siblings, with identical rules and age-appropriate consequences. For non-negotiable diabetes tasks, offer limited choices. For example, ‘where would like your site placed?’, rather than, ‘can we look at your site now?’

Advising families on mealtime techniques can also be helpful. For example, families should always eat together if possible, distractions should be kept to a minimum (no electronics), offer choices including at least one preferred food and avoid using preferred foods as a substitute for uneaten carbs.

Recent reports have indicated that poor sleep quality in school-age children with diabetes impacts glycaemic control and hypoglycaemia, so check in on sleep at appointments and encourage good sleep hygiene.

To conclude, Professor Streisand summarised the key ways in which parents can be advised to stay physically and mentally healthy:

• Practice good self care
• Create supportive networks within your community and through online support groups
• Maintain healthy nutrition and physical activity
• Focus on what you can control
• Seek help as needed