“Not having a minute of self-distancing during the social distancing is exhausting”: a qualitative study on the perspective of caregivers of youth with type 1 diabetes during the COVID-19 pandemic

OBJECTIVE: To investigate the impact of the COVID-19 pandemic on caregivers of youth with type 1 diabetes. METHODS: We performed a qualitative research based on an open-ended questionnaire that was conducted through an online platform for primary caregivers of children and adolescents with type 1 diabetes. Participants were asked to describe the impact of the COVID-19 outbreak on their caring for youth with diabetes, as well as the emotional burden that it has brought to their personal lives. Interview responses were coded and stratified by youth age: ≤ 12 years (youth aged ≤ 12 years) and between 13 and 18 years (youth aged > 12 years). The connections between the responses were identified based on either positive or negative content of the reported experience. Data were analyzed in accordance with an inductive reasoning methodology. RESULTS: A total of 318 participants (mean age of 40.3 ± 8.1 years old) were included, representing caregivers of youth aged 11.7 ± 4.3-year-old with diabetes duration of 5.1 ± 3.8 years. The preponderance of negative feelings was noteworthy. Regarding diabetes care, more than 80% of participants reported concern and anxiety about the changes in habits that accompanied the pandemic. Also, more than half of caregivers regretted the isolation of their youth, factors that were associated with greater difficulty in achieving good glycemic control. Regarding the personal burden experienced, the negative impact of uncertainties and concerns about the COVID-19 were present in almost all participants. CONCLUSION: The period of pandemic may lead to exhaustion in caregivers of youths with type 1 diabetes, which reflects the need for mental health support strategies to help those families. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00592-021-01753-3.