Survey Finds Added Stress, Financial Burden During COVID-19 Pandemic Common Among T1D Caregivers

Heba Ismail, MBBCH, PhD

Results from an analysis of questionnaire data from caregivers of youth with type 1 diabetes are shedding light on the psychological effects of the COVID-19 pandemic on those caring for pediatric patients with type 1 diabetes.

Leveraging responses to the 49-item questionnaire from 272 caregivers, investigators found survey respondents reported high self-efficacy scores and type 1 diabetes self-efficacy, but more than 90% of survey participants reported experiencing at least 1 challenge during the pandemic, including social isolation and concerns about mental health.

“Data from this survey provide valuable information to clinicians who care for children with type 1 diabetes and their caregivers,” wrote investigators. “Although general, COVID-19–related, and type 1 diabetes care–related self-efficacy were high among caregivers during the COVID-19 pandemic, levels of stress and perceived threat were also high, indicating that caregivers may require additional support to sustain their self-efficacy over an extended period of time.”

Throughout the COVID-19 pandemic, health systems and individual care providers have been under unprecedented strain. Often missing from these discussions are caregivers of pediatric patients with type 1 diabetes, who have had to adapt to changing protocols, added stress, and potential increased risk of COVID-19 severity associated with diabetes during the pandemic. With an interest in developing a greater understanding of caregiver experiences during the COVID-19 pandemic, a team of investigators from Indiana University and the University of Florida created the T1D-COVID-Care Questionnaire.

Developed through a collaborative effort leveraging perspectives from pediatric endocrinologists, nurse practitioners, certified diabetes care and education specialists, and clinical psychologists, the 49-item self-reported questionnaire used a 5-point Likert scale and open-response questions and was distributed via email and social media platforms from May 4-June 22, 2020.

The questionnaire was divided into 4 sections. The first section pertained to demographic and COVID-19-related data on caregiver and the child with type 1 diabetes, including COVID-19–specific variables such as job loss and financial difficulty. The second section had questions related to the COVID-19 pandemic and its effect on caregivers’ lives, including financial impact and related feelings of anxiousness or stress. The third section assessed caregivers’ self-efficacy and the fourth section assessed perceived threat, information receptivity, and prevention behavior.

For responses to be included in the investigators’ analysis, respondents needed to be at least 18 years of age or older, residing within the US, have the ability to read and understand English, and be the parent or carrier of an individual with type 1 diabetes less than 18 years of age.

A total of 307 individuals started the survey and responses from 282 were included in the investigators’ analysis. The mean age of respondents was 42.1±7.8 years, 94.5% were female, 52.6% had an annual income greater than $99,000, and 80.1% were privately insured. The mean age of the child with type 1 diabetes was 11.0±4.1 years and the mean duration of diabetes was 4.2±3.5 years.

Investigators reported notable findings from assessments of responses, including 10.3% of respondents reporting job loss, 26.8% reporting experiences of financial difficulty, 24.6% reporting being diagnosed with or knowing someone with COVID-19, and 71.9% reporting increased stress levels. Investigators note general self-efficacy scores were high, with amean score of 16.2±2.6, and these significantly correlated with COVID-10 self-efficacy (12.6±2.1; R=.394; P <.001) and type 1 diabetes self-efficacy during the COVID-19 (17.1±2.5; R=.421; P <.001).

“COVID-19 is unlikely to be the last worldwide pandemic. Therefore, health care providers should be aware of these findings and continue their efforts to provide accurate information, as well as social and mental health support for children with type 1 diabetes and their caregivers, during future health emergencies,” investigators added.

This study, “COVID-19 Pandemic Effects on Caregivers of Youth With Type 1 Diabetes: Stress and Self-Efficacy,” was published in Diabetes Spectrum.