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Developing a general population screening programme for paediatric type 1 diabetes : evidence from a qualitative study of the perspectives and attitudes of parents
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Quinn, L., Narendran, P., Bhavra, K., Boardman, Felicity K., Greenfield, S., Randell, M. and Litchfield, I. (2024) Developing a general population screening programme for paediatric type 1 diabetes : evidence from a qualitative study of the perspectives and attitudes of parents. Paediatric Diabetes . ISSN 1399-543X. (In Press)
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Abstract
Introduction: With reliable tests and preventative treatments now available the United Kingdom has introduced a prototype population-based paediatric (ages 3-13) screening programme for type 1 diabetes. To aid its ethical and sustainable implementation this work explores parental views around the concept of this programme to determine how their involvement might be encouraged and supported.
Research Design and Methods: Qualitative interviews were undertaken with 38 parents and the data was analysed using a purposely developed “Burden of Screening” framework, which presented the data within three domains describing the various elements of screening participation; Pre-screening tasks designated to participants; Factors influencing engagement with screening; and Consequences of screening participation. Results: Regarding Pre-screening tasks designated to participants, the importance of clear communication about the condition was apparent with parents expressing uncertainty of the benefits of screening against the potential anxiety engendered. In Factors influencing their engagement with screening participants described their preference for less invasive testing techniques, the reassurance of structured support from health care professionals inherent within the programme, and the potential benefit of peer support. Regarding the Consequences of screening participation parents described how a positive result might lead to overly protective behaviours, and anxiety from watching and waiting for the onset of symptomatic type 1 diabetes.
Conclusions: The benefits of type 1 diabetes screening need to be clearly communicated to facilitate uptake. To this end the use of decision-support tools and better targeted educational materials should be explored. Post-testing, parents expressed preferences for peer support and access to psychological counselling.
Item Type: | Journal Article | ||||||
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Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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Journal or Publication Title: | Paediatric Diabetes | ||||||
Publisher: | John Wiley & Sons | ||||||
ISSN: | 1399-543X | ||||||
Official Date: | 2024 | ||||||
Dates: |
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Status: | Peer Reviewed | ||||||
Publication Status: | In Press | ||||||
Access rights to Published version: | Restricted or Subscription Access | ||||||
Date of first compliant deposit: | 12 February 2024 | ||||||
Funder: | National Institute for Health and Care Research grant (NIHR202816) | ||||||
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