‘I was ready for it at the beginning’: Parent experiences with early introduction of continuous glucose monitoring following their child's Type 1 diabetes diagnosis

Abstract

Aim: This study aimed to capture the experience of parents of youth with recent onset Type 1 diabetes who initiated use of continuous glucose monitoring (CGM) technology soon after diagnosis, which is a new practice. Methods: Focus groups and individual interviews were conducted with parents of youth with Type 1 diabetes who had early initiation of CGM as part of a new clinical protocol. Interviewers used a semi-structured interview guide to elicit feedback and experiences with starting CGM within 30 days of diagnosis, and the benefits and barriers they experienced when adjusting to this technology. Groups and interviews were audio recorded, transcribed and analysed using content analysis. Results: Participants were 16 parents (age 44.13 ± 8.43 years; 75% female; 56.25% non-Hispanic White) of youth (age 12.38 ± 4.15 years; 50% female; 50% non-Hispanic White; diabetes duration 10.35 ± 3.89 months) who initiated CGM 11.31 ± 7.33 days after diabetes diagnosis. Overall, parents reported high levels of satisfaction with starting CGM within a month of diagnosis and described a high level of reliance on the technology to help manage their child's diabetes. All participants recommended early CGM initiation for future families and were committed to continue using the technology for the foreseeable future, provided that insurance covered it. Conclusion: Parents experienced CGM initiation shortly after their child's Type 1 diabetes diagnosis as a highly beneficial and essential part of adjusting to living with diabetes. K E Y W O R D S children and adolescents, devices, health care delivery, psychological aspects What's new?• Continuous glucose monitoring (CGM) in a paediatric Type 1 diabetes population has benefits for time spent in glucose target range and parents' sleep and stress levels; introducing CGM shortly after Type 1 diabetes diagnosis is a new clinical practice.'The idea of the CGM is definitely a forever' (FG5, mother, son aged 14) '[My child will] have to use it the whole time she's in college, and I think she will continue to use it after because it's just so much more helpful for her too. We all agree it's been life-changing for us. As long as we can keep the insurance and everything covered, she'll keep using it, I'm assuming, forever' (FG3, father, daughter aged 19)Abbreviation: CGM, continuous glucose monitoring.How to cite this article: Tanenbaum ML, Zaharieva DP, Addala A, et al. 'I was ready for it at the beginning': Parent experiences with early introduction of continuous glucose monitoring following their child's Type 1 diabetes diagnosis. Diabet Med.

Parental experiences of short term supported use of a do‐it‐yourself continuous glucose monitor (DIYrtCGM): A qualitative study

“…Alarm fatigue has been identified as a common reason for discontinuing with rtCGM use 29 . However, recent qualitative studies of rtCGM use, including this study, have not identified alarm fatigue 15–18 . This may be due to the short duration of CGM use in these studies.…”

“…However, this improvement came with the added responsibility of continually monitoring and taking action. Parents reported improved sleep due to reduced need for nocturnal glucose monitoring in a similar manner to Buckhardt et al 15 and Tanenbaum et al 18 Given the negative impacts of disturbed sleep, 4 it was not surprising that the possibility of sleep without disruption—should glucose alarms not be triggered—was highly valued by parents. In this respect, while nighttimes were improved by DIYrtCGM, the requirement for ‘eternal vigilance’ (Sullivan‐Boyani et al 3 , p. 27) was increased during waking hours.…”

“…A number of parents were unsure if they would be able to continue to troubleshoot issues with DIYrtCGM, which for some families were described as very frequent, particularly from those using Apple devices. It is also notable that parents identify problems with commercial CGM systems, including signal loss and sensor accuracy 15,16,18 . However, commercial systems have systematic user‐support systems.…”

“…In addition to glycaemic benefits, CGM use improves the quality of life and reduces fear of hypoglycaemia 14 . A small number of studies have qualitatively investigated parents’ and caregivers’ experiences of CGM‐use amongst children with type 1 diabetes 15–19 . These studies have shown that parents find that the benefits of CGM outweigh the burdens.…”

“…Relatedly, parents identified a range of limitations to CGM devices such as loss of bluetooth signal, accuracy of glucose data and, for some CGM, the requirement to calibrate. 15,18 Although the evidence for the benefits of CGM is growing, access to CGM remains limited in many jurisdictions. 20 The most rapid growth in the use of CGM appears to be with intermittently scanned CGM (isCGM), 21 a type of CGM that does not transmit data, but rather must be swiped with a reader or enabled phone to get a glucose reading.…”