Caring for caregivers: the impact of the COVID-19 pandemic on those responsible for children and adolescents with type 1 diabetes

This study aimed to assess the psychological impact of the COVID-19 pandemic on guardians of children and adolescents with type 1 diabetes. An online survey was performed to assess the prevalence of pandemic-related emotional burden, mental health disorders and diabetes-specific emotional burden related to diabetes care during the COVID-19 pandemic. Caregivers of children and adolescents with diabetes under the age of 18 and caregivers of youth without diabetes for the non-diabetes group were invited to participate. For the primary outcome, mental health disorders were evaluated using the Self-Reporting Questionnaire (SRQ-20), while pandemic-related emotional burden and diabetes-specific emotional burden related to diabetes care were evaluated in different domains with specific questions. For analyses, a hierarchical testing strategy was performed. A total of 764 participants were included in the study. Regarding the pandemic period, caregivers of youth with type 1 diabetes endorsed significantly more pandemic-related emotional burden for both themselves (OR 1.67; 95% CI, 1.10 to 2.53) and for their child (OR 2.28; 95% CI, 1.54 to 3.38) when compared to the non-diabetes group. The emotional burden evaluation on different age ranges showed that the two groups were similar when the dependent youth was younger than 6 years. Moreover, a positive screening for mental health disorders during social distancing was higher in the diabetes group compared to the non-diabetes group (OR 2.43; 95% CI, 1.70 to 3.47), particularly in those aged under 12 years old. There was no difference between groups in mental health disorders among caregivers of adolescents older than 12 years. Our results allow to conclude that concern, burden and mental health disorders can be present in caregivers of youth with diabetes, and behavioral changes during the COVID-19 pandemic may enhance this situation.


Support and relationships
Participants were asked to answer the following questions: 1) Satisfactory relationships: "Do you consider that you have satisfactory relationships (i.e, do you feel that you can share good times, as well as you can count on friends or family when you have difficulties and needs?)".
2) Welcoming family environment: "Do you consider your family environment welcoming (that is, people are affectionate and loving? Do you feel comfortable in your daily lives)?".
Participants were asked to choose based on the last six months one of the following options regarding the topics already mentioned: "most of the time", "occasionally" or "almost never / never". For analysis, a negative response was considered when participants answered "almost never / never".

Consequences of social distancing
It was considered that family income decreased if the patient answered yes to the reduction of some source of family income since the beginning of the pandemic.
Purchase difficulty was considered if the participant answered "yes" to the question: "Did you have any financial difficulties to buy food or medicine during the pandemic?".
Difficulty in medical care was considered if the participant answered "yes" to the question: "Did you have any difficulty getting medical care for your child at any time that you considered necessary?".

Continuous-use medication (%) -100%
Data are mean ± standard deviation or %. α ≤ 0.05 indicates significant difference. *Lower-middle income: family that receives a total of less than 2564 reais per month, as defined by the Strategic Affairs Secretariat (SAE) of Brazil in 2012, equivalent to 495.8 dollars or 430 euros. Data are prevalence (%) and odds ratio (OR) with confidence interval (95%). An OR greater than 1 means that there was an increase in likelihood to present the psychosocial characteristic evaluated in the diabetes group in relation to the comparator group (OR for control group = 1). All odds ratio are adjusted for age of the child, race/ethnicity, income and region of origin. † Positive screening for mental health disorders accessed by a score greater than or equal to 7 on the SRQ-20. Data are odds ratio (OR) with confidence interval (95%). %). An OR greater than 1 means that there was an increase in likelihood to present the psychosocial characteristic evaluated in the diabetes group in relation to the non-diabetes group (OR for non-diabetes group = 1). All odds ratio are adjusted for age of the child, race/ethnicity, income and region of origin. For age < 6 years, n = 150 in the non-diabetes group. For age ≥ 6 and ≤ 12 years, n = 150 in the non-diabetes group. For age > 12 years, n = 74 in the non-diabetes group. *There is not enough data for the analysis. † Positive screening for mental health disorders accessed by a score greater than or equal to 7 on the SRQ-20. Data are odds ratio (OR) with confidence interval (95%). An OR greater than 1 means that there was an increase in likelihood to present the psychosocial characteristic evaluated in the diabetes group in relation to the non-diabetes group (OR for non-diabetes group = 1). All odds ratio are adjusted for age of the child, income and region of origin. For race/ ethnicity white, n = 336 in the nondiabetes group. † Positive screening for mental health disorders accessed by a score greater than or equal to 7 on the SRQ-20.

Supplementary figure 1.
Number of patients identified, eligible and included in the study in the diabetes and non-diabetes groups.

participants
Participants excluded: