Parents' experiences of using remote monitoring technology to manage type 1 diabetes in very young children during a clinical trial: Qualitative study

Ruth I Hart, Barbara Kimbell, David Rankin, Janet M Allen, Charlotte K Boughton, Fiona Campbell, Carine de Beaufort, Elke Fröhlich-Reiterer, Julia Ware, Sabine E Hofer, Thomas M Kapellen, Birgit Rami-Merhar, Ajay Thankamony, Roman Hovorka, Julia Lawton, KidsAP Consortium, Ruth I Hart, Barbara Kimbell, David Rankin, Janet M Allen, Charlotte K Boughton, Fiona Campbell, Carine de Beaufort, Elke Fröhlich-Reiterer, Julia Ware, Sabine E Hofer, Thomas M Kapellen, Birgit Rami-Merhar, Ajay Thankamony, Roman Hovorka, Julia Lawton, KidsAP Consortium

Abstract

Aims: To explore parents' experiences of using remote monitoring technology when caring for a very young child with type 1 diabetes during a clinical trial.

Methods: Interviews were conducted with parents of 30 children (aged 1-7 years) participating in a trial (the KidsAP02 study) comparing hybrid closed-loop insulin delivery with sensor-augmented pump therapy. In both arms, parents had access to remote monitoring technology. Data analysis focused on identification of descriptive themes.

Results: Remote monitoring technology gave parents improved access to data which helped them pre-empt and manage glucose excursions. Parents observed how, when children were in their own care, they could be more absent while present, as their attention could shift to non-diabetes-related activities. Conversely, when children were others' care, remote monitoring enabled parents to be present while absent, by facilitating oversight and collaboration with caregivers. Parents described how remote monitoring made them feel more confident allowing others to care for their children. Parents' confidence increased when using a hybrid closed-loop system, as less work was required to keep glucose in range. Benefits to children were also highlighted, including being able to play and sleep uninterrupted and attend parties and sleepovers without their parents. While most parents welcomed the increased sense of control remote monitoring offered, some noted downsides, such as lack of respite from caregiving responsibilities.

Conclusions: Remote monitoring can offer manifold benefits to both parents and very young children with type 1 diabetes. Some parents, however, may profit from opportunities to take 'time out'.

Keywords: closed-loop system; parents; qualitative research; remote monitoring; sensor-augmented pump therapy; type 1 diabetes; young children.

Conflict of interest statement

RH reports having received speaker honoraria from Eli Lilly and Novo Nordisk, serving on advisory panel for Eli Lilly and Novo Nordisk and receiving licence fees from BBraun and Medtronic. RH also reports patents, patent applications, shareholding and directorship at CamDiab. FC has attended Advisory Boards and obtained speaking fees for Abbott, Medtronic, Lilly and NovoNordisk. CdB has contributed to the Medtronic e‐learning tools. EFR reports having received speaker honoraria from Eli Lilly and Novo Nordisk, and serving on advisory boards for Eli Lilly and Sanofi. SH declares having received speaker honoraria from Eli Lilly, Sanofi and Pfizer. TMK has received speaking honoraria from Eli Lilly and MerckSerono and consulted Sanofi for a transition brochure. BRM has received speaker honoraria from Abbott Diabetes Care, Eli Lilly, Medtronic, Novo Nordisk, Roche Diabetes Care, Sanofi and Menarini, and has been on the advisory boards of Roche Diabetes Care and Abbott Diabetes Care. The authors RIH, BK, DR, CKB, JW, JMA, AT and JL have no conflicts of interest to declare.

© 2022 The Authors. Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK.

References

    1. Craig M, Hattersley A, Donaghue KC. Definition, epidemiology and classification of diabetes in children and adolescents. Pediatr Diabetes. 2009;10:3‐12.
    1. Sundberg F, Barnard K, Cato A, et al. Managing diabetes in preschool children. Pediatr Diabetes. 2017;18:499‐517.
    1. Lawton J, Waugh N, Barnard KD, et al. Challenges of optimizing glycaemia control in children with type 1 diabetes: a qualitative study of parents’ experiences and views. Diabetic Med. 2015;32:1063‐1070.
    1. DiMeglio LA, Kanapka LG, DeSalvo DJ, et al. Time spent outside of target glucose range for young children with type 1 diabetes: a continuous glucose monitor study. Diabetic Med. 2020;37:1308‐1315.
    1. Sullivan‐Boylai S, Deatrick J, Gruppuso P, Tamborlane W, Grey M. Constant vigilance: mothers’ work parenting young children with type 1 diabetes. J Pediatr Nurs. 2003;18:21‐29.
    1. Commissariat PV, Harrington KR, Whitehouse AL, et al. “I’m essentially his pancreas”: parent perceptions of diabetes burden and opportunities to reduce burden in the care of children <8 years old with type 1 diabetes. Pediatr Diabetes. 2020;21:377‐383.
    1. Kimbell B, Lawton J, Boughton C, Hovorka R, Rankin D. Parents’ experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence. BMC Pediatr. 2021;21:160.
    1. Bedrossian J, Kerr L, Robertson L, et al. Critical design factors for information technology supporting type 1 diabetes management. In: IEEE Systems and Information Engineering Design Symposium (SIEDS). IEEE; 2016:261‐266. Available from:
    1. Didyuk O, Econom N, Guardia A, Livingston K, Klueh U. Continuous glucose monitoring devices: past, present, and future focus on the history and evolution of technological innovation. J Diabetes Sci Technol. 2021;15:676‐683.
    1. Lawton J, Hart RI, Kimbell B, et al. Data sharing while using a closed‐loop system: qualitative study of adolescents’ and parents’ experiences and views. Diabetes Technol Ther. 2021;23:1‐8.
    1. Erie C, Van Name MA, Weyman K, et al. Schooling diabetes: use of continuous glucose monitoring and remote monitors in the home and school settings. Pediatr Diabetes. 2018;19:92‐97.
    1. Elbalshy M, Boucher S, Crocket H, et al. Exploring parental experiences of using a do‐it‐yourself solution for continuous glucose monitoring among children and adolescents with type 1 diabetes: a qualitative study. J Diabetes Sci Technol. 2020;14:844‐853.
    1. Litchman ML, Allen NA, Colicchio VD, et al. A qualitative analysis of real‐time continuous glucose monitoring data sharing with care partners: to share or not to share? Diabetes Technol Ther. 2018;20:1‐7.
    1. Burckhardt MA, Roberts A, Smith GJ, Abraham MB, Davis EA, Jones TW. The use of continuous glucose monitoring with remote monitoring improves psychosocial measures in parents of children with type 1 diabetes: a randomized crossover trial. Diabetes Care. 2018;41:2641‐2643.
    1. Burckhardt M‐A, Fried L, Bebbington K, et al. Use of remote monitoring with continuous glucose monitoring in young children with type 1 diabetes: the parents’ perspective. Diabetic Med. 2019;36:1453‐1459.
    1. Hilliard ME, Levy W, Anderson BJ, et al. Benefits and barriers of continuous glucose monitoring in young children with type 1 diabetes. Diabetes Technol Ther. 2019;21(9):493‐498.
    1. Fuchs J, Allen JM, Boughton CK, et al. Assessing the efficacy, safety and utility of closed‐loop insulin delivery compared with sensor‐augmented pump therapy in very young children with type 1 diabetes (KidsAP02 study): an open‐label, multicentre, multinational, randomised cross‐over study protocol. BMJ Open. 2021;11:e042790.
    1. Ware J, Allen JM, Boughton CK, et al. Randomized trial of closed‐loop control in very young children with type 1 diabetes. NEJM. 2021;386(3):209‐219.
    1. Lawton J, Blackburn M, Allen J, et al. The impact of using a closed‐loop system on food choices and eating practices amongst people with type 1 diabetes: a qualitative study involving adults, teenagers and parents. Diabetic Med. 2019;36(6):753‐760.
    1. Tong A, Sainsbury S, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32‐item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349‐357.
    1. Strauss A, Corbin JM. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage Publications, Inc; 1990.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77‐101.
    1. Haslund‐Thomsen H, Hasselbach LA, Laugesen B. Parental experiences of continuous glucose monitoring in danish children with type 1 diabetes mellitus. J Pediatr Nurs. 2020;53:e149‐e155.
    1. Brew‐Sam N, Chhabra M, Parkinson A, et al. Experiences of young people and their caregivers of using technology to manage type 1 diabetes mellitus: systematic literature review and narrative synthesis. JMIR Diabetes. 2021;6:e20973.
    1. March CA, Nanni M, Kazmerski TM, Siminerio LM, Miller E, Libman IM. Modern diabetes devices in the school setting: perspectives from school nurses. Pediatr Diabetes. 2020;21:832‐840.
    1. Laffel LM, Kanapka LG, Beck RW, et al. Effect of continuous glucose monitoring on glycemic control in adolescents and young adults with type 1 diabetes: a randomized clinical trial. JAMA. 2020;323(23):2388‐2396.

Source: PubMed

赞助者和合作者

医疗条件

药物干预

3
订阅