Publications

Psychosocial Aspects

MEASURING DIVISION OF CARE IN T1D

Jori Aalders, Giesje Nefs, Esther Hartman, Linh A. Nguyen, Per Winterdijk, Edgar van Mil, Henk-Jan Aanstoot, Frans Pouwer

A Systematic Review of Instruments Measuring the Division of Care Responsibilities between Children with Type 1 Diabetes and their Parents. Curr Diabetes Rev . 2023;19(5):59-93.

Last year we reported on the difficulties of the transfer of diabetes care responsibilities from parents to their children. To be able to study this transfer, the division of care responsibilities between parents and children needs to be measured. Multiple instruments are available for this, as well as different methods to convert the raw data of these instruments into final scores.

 

This review, co-authored by Giesje Nefs, Per Winterdijk and Henk-Jan Aanstoot of Diabeter, provides an overview of instruments used in earlier studies, their psychometric properties and methods to convert raw data into final scores.

Key findings:

  • In 84 articles (62 samples), 13 different questionnaires measuring the division of diabetes care responsibilities between parents and children were identified.
  • The Diabetes Family Responsibility Questionnaire (DFRQ) was used most frequently (n= 42 studies), followed by the Diabetes Responsibility and Conflict Scale (DRCS; n=7 studies).
  • Most instruments were developed in English (85%) and came from the USA (77%).
  • All instruments asked study participants per individual task how tasks/responsibilities were divided between parents and children.
  • There was much variation in number of evaluated tasks between instruments, as well as in response options and scales.
  • Instruments used in original studies were often adapted for later studies.
  • Different scoring methods to convert raw data into final scores were found.
  • Key information about psychometric properties and clear construct definitions/links with theory were often not present.
  • Most instruments scored poorly on the majority of criteria for content validity, with the DFRQ scoring best.

 

Concluding, the authors state

"At this point, the DFRQ might be most suitable to assess the division as this instrument facilitates comparability because of its frequent use and it underwent more thorough psychometric evaluation in comparison to the other instruments, …………….. the DFRQ needs to be updated to include contemporary diabetes tasks or a new scale should be developed that addresses the reported limitations of the DFRQ." -

Please click here for the Pubmed link.

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