The unrelenting care of diabetes

In our previous blog posts, we have covered the journey of uncertainty in childhood cancer both from the persepctive of children as well as from the perspective of parents. As Triumf is getting ready for the start of the next clinical trial, in this post we will share some of the challenges that accompany the diagnosis of pediatric diabetes.

Receiving a diagnosis of diabetes and the stressors related with the illness are, understandably, unexpected. When the diagnosis is there, it can feel as uncontrollable and impairing in terms of daily routines as the treatment of the illness is complex and demanding. At the time of diagnosis, children may feel confused and worried as they were feeling just fine but now have to adopt a lot of new information and learn how to manage a lifelong illness to keep oneself healthy. Later on, children may feel different from their peers or when going to routine checkups, guilty about the „bad numbers“ (1).

Parents become responsible of the daily management of type 1 diabetes (T1D) and are also overwhelmed with the amount of new information. The demanding role may lead to parental worry about the acute and chronic complications of T1D management (2). The previous social support system may also change as not all are ready to participate in T1D care. The management of the illness, as it includes nearly all the aspects of the child’s daily activities, has been described as unrelenting (2).

But how to help?

Although every chronic disease has its specifics, the factors leading to mental burden are largely common across different conditions, including similarly to the above, changes in daily routines, stressful states related to treatment procedures and psychological uncertainty (1,3). Relatedly, psychological problems are comparable between general and chronically ill populations, involving mostly symptoms associated with anxiety, depression and behavioral problems (3,4). Indeed, when comparing with healthy peers, a greater incidence of psychological distress, depression or diabetes distress, anxiety, and eating disorders among children diagnosed with diabetes has been found (5). Furthermore, it has been found that when children have adjustment problems, they also have a higher risk for continued adjustment difficulties and that pscyhological problems may interfere with diabetes self-management (5).

Because of the similar problems, various traditional intervention strategies aimed at reducing mental burden (e.g. psychoeducational programs, solution focused brief therapy, cognitive behavioral therapy (CBT) and mindfulness-based interventions) have been used interchangeably between chronically ill patients and patients without chronic illness (6–8). Also family based or individual behavioral interventions have found to benefit in glycemic control or psychosocial well-being (5).

Although psychological support is considered an essential part of comprehensive care, unfortunately the availability and quality is not yet unified. With our Triumf mobile health game, we aim to reach more children to be able to detect, prevent and/or reduce the potential psychological problems resulting from chronic illness.

References

1. Compas BE, Jaser SS, Dunn MJ, Rodriguez EM. Coping with chronic illness in childhood and adolescence. Annu Rev Clin Psychol. 2012;8:455–80.

2. Streisand R, Monaghan M. Young Children with Type 1 Diabetes: Challenges, Research, and Future Directions. Curr Diab Rep. 2014;14(9):520.

3. Butler A, Van Lieshout RJ, Lipman EL, MacMillan HL, Gonzalez A, Gorter JW, et al. Mental disorder in children with physical conditions: A pilot study. BMJ Open. 2018;8(1):e019011.

4. Hysing M, Elgen I, Gillberg C, Lie SA, Lundervold AJ. Chronic physical illness and mental health in children. Results from a large-scale population study. J Child Psychol Psychiatry. 2007 Aug;48(8):785–92.

5. Delamater AM, de Wit M, McDarby V, Malik JA, Hilliard ME, Northam E, et al. ISPAD Clinical Practice Consensus Guidelines 2018: Psychological care of children and adolescents with type 1 diabetes. Pediatr Diabetes. 2018;19(November):237–49.

6. Beale IL. Scholarly literature review: Efficacy of psychological interventions for pediatric chronic illnesses. J Pediatr Psychol. 2006;31(5):437–51.

7. Bennett S, Shafran R, Coughtrey A, Walker S, Heyman I. Psychological interventions for mental health disorders in children with chronic physical illness: A systematic review. Arch Dis Child. 2015 Apr;100(4):308–16.

8. Bond C, Woods K, Humphrey N, Symes W, Green L. Practitioner Review: The effectiveness of solution focused brief therapy with children and families: a systematic and critical evaluation of the literature from 1990-2010. J Child Psychol Psychiatry. 2013;54(7):707–23.