Loneliness Associated With Greater Burden of Care Among Caregivers of Children With Type 1 Diabetes


These findings can help health care professionals develop a family-centered treatment plan for pediatric type 1 diabetes, considered a “family disease” by study authors.

Caregivers of children with type 1 diabetes (T1D) have a higher sense of loneliness associated with a higher burden of care, a study published in BioPsychoSocial Medicine revealed.1

Investigators aimed to assess the burden of care and sense of loneliness in caregivers of children with T1D with a cross-sectional study in Poland that featured 125 caregivers. Research data was collected using the Caregiver Burden Scale (CB Scale) and the Revised UCLA Loneliness Scale (R-UCLA).

Burden of care refers to how caregivers perceive responsibilities and any potential limitations that can occur in the care of children with T1D. According to the study, pediatric T1D can be referred to as a “family disease” because of the role family members play in the process.

Adjusting to new situations, emotional and physical overload, working with health care professionals, and a struggle to maintain normality are all contributing factors to caregiver burden related to pediatric T1D, the study authors wrote.

Conducted in 2 diabetology clinics at tertiary-care centers during parent-child follow-up visits between January and March 2020, the study featured caregivers selected using the convenience sampling method.

The Polish version of the CB Scale, used to assess caregiver burden, featured 22 questions across general strain, isolation, disappointment, emotional involvement, and environment subscales.

Caregivers answered on a scale of 1 to 4 for each question. Burdens were classified as high level (3-4), medium level (2-2.99), and low level (1-1.99).

To determine loneliness, the R-UCLA scale was used, which consisted of 20 statements. Participants chose, on a 4-point scale, how the statement described them. The 4-point scale options included “never feel like that” (1) or “I often feel like that” (4).

Nearly 60% of participants were between 36 and 45 years of age, with women accounting for 81.6% of caregivers.

The average child age was 11 years (SD = 3.55). In 56.8% of children's disease duration was 1 to 3 years, with 4 years serving as the average duration of disease (SD = 3.2).

The total result in the caregiving burden scale was 2.14 points, ranging in the middle of the burden scale (SD = 0.56). In the disappointment subscale, a high burden level was reported in 28.5% of caregivers.

Additionally, a high burden level was documented in 24.8% of caregivers on the general strain subscale. Mothers reported higher care burden in the general strain and emotional involvement subscales compared to fathers (P = 0.056 and P = 5.051, respectively).

A negative correlation was observed for child age and disappointment subscale burden (P = 0.048).

For loneliness, the average R-UCLA score was 33.56 points (SD = 8.43), which indicated a low sense of loneliness, leaving 34.4% of caregivers scoring moderate loneliness and 4.8% scoring moderately high loneliness.

In relation to the belongings and affiliation subscale, caregivers with vocational or lower education demonstrated “significantly higher” scores than caregivers with higher and secondary education (P < 0.01).

Overall, higher values were observed by non-working caregivers (P = 0.045.)

The cross-sectional study revealed, generally, that direct caregivers of children with T1D had an average level of care and a low sense of loneliness.

Caregivers of younger children with diabetes, along with mothers and caregivers that were unemployed, should be “under more frequent monitoring for the burden of care,” the authors wrote.

Results of the study could help health care professionals create a holistic care program centered around the family, including factors that can increase burden of care, which can include younger age of the child, unemployment, lower education, and motherhood, among other factors.

This article originally appeared in Contemporary Pediatrics.

1. Kobos E, Rojkowska S, Szewczyk A, Dziedzic B. Burden of care and a sense of loneliness in caregivers of children with type 1 diabetes. a cross-sectional study. Biopsychosoc Med. 2023;17(1):34. doi:10.1186/s13030-023-00291-4
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