Parental experiences of using continuous glucose monitoring in their young children with early-stage type 1 diabetes: a qualitative interview study

Alison G Roberts; Alexandra S Tully; Sabrina K Binkowski; Keely R Bebbington; Megan A S Penno; Amanda J Anderson; Maria E Craig; Peter G Colman; Tony Huynh; Kelly J McGorm; Georgia Soldatos; Peter J Vuillermin; John M Wentworth; Elizabeth A Davis; Jennifer J Couper; Aveni Haynes

doi:10.3389/fcdhc.2024.1479948

Parental experiences of using continuous glucose monitoring in their young children with early-stage type 1 diabetes: a qualitative interview study

Front Clin Diabetes Healthc. 2024 Nov 14:5:1479948. doi: 10.3389/fcdhc.2024.1479948. eCollection 2024.

Authors

Alison G Roberts^{1

2}, Alexandra S Tully², Sabrina K Binkowski², Keely R Bebbington², Megan A S Penno³, Amanda J Anderson³, Maria E Craig^{4

5}, Peter G Colman⁶, Tony Huynh^{7

8

9}, Kelly J McGorm³, Georgia Soldatos¹⁰, Peter J Vuillermin¹¹, John M Wentworth^{6

12}, Elizabeth A Davis^{1

2}, Jennifer J Couper^{3

13}, Aveni Haynes^{2

14}

Affiliations

¹ Department of Endocrinology and Diabetes, Perth Children's Hospital, Perth, WA, Australia.
² Children's Diabetes Centre, Telethon Kids Institute, The University of Western Australia, Perth, WA, Australia.
³ The University of Adelaide, Robinson Research Institute, Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia.
⁴ School of Clinical Medicine, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia.
⁵ Department of Diabetes & Endocrinology, The Children's Hospital at Westmead, Sydney, NSW, Australia.
⁶ Melbourne Health Pathology, Department of Diabetes and Endocrinology, The Royal Melbourne Hospital, Parkville, VIC, Australia.
⁷ Department of Endocrinology and Diabetes, Queensland Children's Hospital, South Brisbane, QLD, Australia.
⁸ Children's Health Research Centre, Faculty of Medicine, The University of Queensland, South Brisbane, QLD, Australia.
⁹ Department of Chemical Pathology, Mater Health Services, South Brisbane, QLD, Australia.
¹⁰ Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Melbourne and Diabetes and Vascular Medicine Unit, Monash Health, Melbourne, VIC, Australia.
¹¹ Faculty of School of Medicine, Deakin University and Child Health Research Unit, Barwon Health, Geelong, VIC, Australia.
¹² Walter and Eliza Hall Institute of Medical Research, Melbourne, VIC, Australia.
¹³ Department of Diabetes & Endocrinology, Women's and Children's Hospital, Adelaide, SA, Australia.
¹⁴ The University of Western Australia (UWA) Medical School, Pediatrics, Perth, WA, Australia.

Abstract

Aim: To explore parents' experiences of using continuous glucose monitoring (CGM) in their young children with early-stage type 1 diabetes, being followed in the Australian Environmental Determinants of Islet Autoimmunity (ENDIA) study.

Methods: Parents of children with persistent islet autoimmunity who enrolled in the ENDIA CGM sub-study were invited to participate in an optional interview. Semi-structured phone interviews were conducted by a single researcher using an interview guide developed by a multi-disciplinary team. Interviews were conducted following a single CGM monitoring period and prior to parents receiving feedback on their child's glycemic status. Following transcription, thematic analysis was conducted to determine common themes.

Results: Nine parents (8 mothers, 1 father) were interviewed corresponding to ten children, with a mean (SD) age of 5.6 (2.2) years, who wore CGM for 97 (0.1)% of the time during their monitoring period. Three main themes were identified: (1) Information empowers and helps to reduce uncertainty; (2) Families' acceptance of using CGM; and (3) Involvement in research provides support and preparation for the unknown.

Conclusions: Parents reported a positive experience of their young child wearing blinded CGM, and the children tolerated wearing CGM very well. Parents were empowered by knowing they would receive information on their child's glucose levels and patterns and felt well supported. This study provides novel insights into parents' experiences of using CGM in very young children with early-stage type 1 diabetes.

Keywords: children; continuous glucose monitoring; early-stage type 1 diabetes; islet autoimmunity; monitoring; parents’ perception; staging; type 1 diabetes.

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The ENDIA CGM sub-study has been supported by Diabetes Research Western Australia, the Women and Children’s Hospital Research Foundation, Australasian Pediatric Endocrinology Group and The Leona M. and Harry B. Helmsley Charitable Trust (grant key 2205-05241). ENDIA follow up was supported by JDRF Australia, the recipient of the Commonwealth of Australia grants for Accelerated Research under the Medical Research Future Fund, and with funding from The Leona M. and Harry B. Helmsley Charitable Trust (grant keys 3-SRA-2023-1374-M-N, 3-SRA-2020-966-M-N, 1-SRA-2019-871-M-B, 4-SRA-2015-127-M-B). Dr AH was awarded a JDRF Postdoctoral Fellowship (grant key 3-PDF-2020-939-A-N) and Raine Medical Research Foundation priming grant to lead this study.