A Systematic Review of Instruments Measuring the Division of Care Responsibilities between Children with Type 1 Diabetes and their Parents

Abstract

Background: The division of care responsibilities between parents and children with type 1 diabetes, and an optimal transfer of responsibilities from parent to child over time are assumed to be key for optimal diabetes outcomes during childhood and adolescence. However, an overview of instruments assessing this division as well as their psychometric qualities is currently lacking. Objective: To 1) identify all existing instruments, 2) evaluate their psychometric properties, and 3) provide an overview of scoring methods. Methods: Pubmed and PsycINFO were searched using an a priori defined search string. Peer-reviewed studies in English using an instrument assessing the division of diabetes care responsibilities between children (6-18 years) and parents were included. In total, 84 of 725 articles qualified, covering 62 unique samples. Results: Thirteen questionnaires were identified. The Diabetes Family Responsibility Questionnaire (DFRQ) was most frequently used across studies. Instructions, content and number of tasks, response options, and scoring methods varied across questionnaires. Recent studies often adapted questionnaires, contributing to the heterogeneity across measures. Overall, reporting and quality of psychometric properties was suboptimal. Conclusion: The division of diabetes care responsibilities can be operationalized with various instruments, each having its strengths and weaknesses but all with limited psychometric support. To measure the division of diabetes care responsibilities more adequately, an updated version of the popular DFRQ or a new scale needs to be developed and evaluated.