How can we improve the emotional well-being of parents of young children with type 1 diabetes?

US researchers trial a three-step program of stepped-care support

Dr Shikha M Gray

Young children with type 1 diabetes depend entirely on their parents for managing their diabetes day-to-day. After diagnosis, parents need to adapt quickly. They must learn how to do complex and relentless tasks. They must adjust home life and adapt family routines.

Parents also need to deal with how they feel about their child living with diabetes. They often have worries, anxieties, frustrations, and other negative emotions. Given these challenges, parents are likely to experience depressive mood. Unfortunately, emotional support programs for parents are not common.

In the US, Dr Marissa Hilliard and colleagues have developed and tested a parent support program called First STEPS. STEPS stands for ‘Study of Type 1 in Early childhood and Parenting Support’. The aim is to improve parents’ emotional well-being, and their skills in managing their child’s glucose levels. It is a ‘stepped-care’ program, with three steps:

      • Step 1: parents connect with a ‘parent coach’ for 9 months. The parent coach is a parent of a child with type 1 diabetes who is trained in providing peer support. Coaches share their experiences of parenting a child with type 1 diabetes, offering emotional support, as well as practical advice and resources.

Parents are followed-up every ~3 months. Those with high depressive symptoms or whose child has an HbA1c above 8.0% also receive Steps 2 and 3.

      • Step 2: parents receive 5 telephone structured sessions with a behavioural expert. Parents learn skills in problem solving and managing their emotional well-being.
      • Step 3: parents have 2 in-person or telehealth consultations, one with a diabetes educator and another with a psychologist with expertise in diabetes. They receive emotional support and personalised feedback on how they manage diabetes.

In total, 157 parents of young children (aged 1-6 years) with newly diagnosed type 1 diabetes took part in the trial. Parents were assigned at random to the First STEPS program or usual care.

In both groups, parents’ depressive symptoms reduced, and the child’s HbA1c improved. Encouragingly, parents in the First STEPS group had significantly lower depressive symptoms at 9- and 15-month follow-ups, than those receiving usual care. There was no difference between groups in the child’s HbA1c. The results are promising but some questions remain. For example, what is driving the improvement in parents’ mood? Was any one step of the program more beneficial than the others?

This study has many strengths. The researchers recognised that support needs vary. They developed a program that can be tailored to the parent’s current needs. A stepped care program means that scarce clinical resources can be used appropriately. Peer support was offered at the initial stage. More intense support was available from professionals to those who needed it when they needed it.

Check out our other blogs about mental health and families.


Reference: Hilliard ME, Tully C, Monaghan M, Hildebrandt T, Wang CH, Barber JR, Clary L, Gallagher K, Levy W, Cogen F, Henderson C. First STEPS: Primary Outcomes of a Randomized, Stepped-Care Behavioral Clinical Trial for Parents of Young Children with New-Onset Type 1 Diabetes. Diabetes Care, 2022; 45(10): 2238-46.

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