Humanistic Burden of Informal Caregivers of Children and Young Adults with Newly Diagnosed Type 1 Diabetes (T1D): A Systematic Literature Review (SLR)

Abstract

OBJECTIVES: To describe the humanistic and economic burden of informal caregivers of children, adolescents, and young adults newly diagnosed with T1D. METHODS: An SLR was conducted in MEDLINE®, Embase®, and PsycEnfo® (search date: December 7, 2021) to identify clinical and observational studies assessing the humanistic burden experienced by informal caregivers (i.e., persons who provide unpaid care) of children, adolescents, and young adults aged 6 to 21 who were diagnosed with T1D within three months. RESULTS: Four prospective cohort studies and one randomized controlled trial (RCT) were included. Caregiver sample size ranged from 59 to 191. Duration of T1D was 2 to 6 weeks. Among parents of children aged ≤11 years, mothers had a moderate posttraumatic stress disorder symptom severity (mean score: 11.9; standard deviation [SD]: 7.4), while fathers experienced mild severity (8.4; SD: 6.2; p < 0.001; Posttraumatic Diagnostic Scale). Mothers experienced clinically significant symptoms (defined as score >5) of anxiety (mean score: 7.5), social dysfunction (7.5), and somatic symptoms (5.1; General Health Questionnaire [GHQ]-28). Fathers showed clinically significant anxiety (5.5) and social dysfunction (7.7; GHQ-28) only. Results from the RCT indicated a mean hypoglycemia fear score of 46.6 out of 108 at diagnosis and 34.9 after 14 weeks, with a higher score indicating greater fear (Hypoglycemia Fear Survey-Parents). Parents of children aged >11 years experienced clinically significant social dysfunction (mean score for mothers/fathers: 7.6/7.1) and anxiety (mothers: 5.4; GHQ-28). Parents experienced moderate to extreme diabetes-specific stress (defined as score ≥5; mean score: 6.3; SD: 1.9) at diagnosis, and no to moderate stress (4.5; SD: 2.1) at 3 months. None of the included studies reported on economic burden. CONCLUSIONS: Ulis SLR highlights parents of diildren and young adults with newly diagnosed T1D experience caregiver burden, with a greater burden among mothers than fathers. Due to the paucity of evidence, further studies are warranted to better understand the humanistic burden among this group of infonnal caregivers.