Increasing resilience is critical to reduce the burden of living with type one diabetes (T1D), according to participants of a new study.
The findings come from qualitative research into the mental health experiences of young people living with T1D conducted by a collaboration of Embrace, Healing Kids Healing Families and the Rio Tinto Children Diabetes Centre investigators.
Among the themes generated from interviews with young people aged between 13 and 30 living with T1D was the novel finding that experiences leading up to the diagnosis are a potential source of trauma. These may include the symptoms themselves (e.g., intense vomiting and lethargy), social adversity from family due to symptom onset, teachers and other supports, and can lead to adverse mental health outcomes for young people going through the diagnostic pathway and as they manage T1D post-diagnosis.
“Although this finding gives another potential source of trauma for these young people, the emergence of population-based strategies for the early screening of T1D risk in the general population provides us with an opportunity to intervene in the pre-clinical stages to change a young person’s trajectory,” lead author Mx Rigel Paciente said.
Intervening in this period may mitigate the onset of symptoms alongside strategies that address pre-existing mental health concerns.
Other themes from the interviews centred on the responses to, and consequences of trauma – such as diabetes distress, grief, forced acceptance, and other adverse mental health concerns – and the role of resilience throughout the journey.
The study found that a level of general resilience developed prior to diagnosis – particularly from social and familial support – benefited young people’s outlook and willingness to engage with the management of their diabetes shortly after diagnosis. It also concluded that the control and transfer of T1D management between the young person and their parent is most difficult during the transition to adulthood, when the consequences of unaddressed trauma are most evident.
A trauma-informed psychosocial intervention was co-designed with young people, parents and clinicians to equip young people with skills to develop diabetes resilience and reduce the impact of stress.
“Wellbeing-T1D is non-clinical but is based on therapeutic principles such as cognitive behavioural therapy, narrative and storytelling approaches to give tools to manage diabetes distress, boost diabetes resilience, and boost self-compassion,” Mx Paciente said.
The study is among the first to qualitatively investigate the mental health of young people living with T1D from a trauma-informed care and medical trauma perspective.
The Wellbeing-T1D project received an Embrace 2023 Big Idea grant. Embrace is supported by principal partner Rio Tinto and Channel 7 Telethon Trust.