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Ethically incentivising healthy behaviours: views of parents and adolescents with type 1 diabetes

Abstract

Background To assess ethical concerns associated with participation in a financial incentive (FI) programme to help adolescents with type 1 diabetes improve diabetes self-management.

Methods Focus groups with 46 adolescents with type 1 diabetes ages 12–17 and 38 of their parents were conducted in the Seattle, Washington metropolitan area. Semistructured focus group guides addressed ethical concerns related to the use of FI to promote change in diabetes self-management. Qualitative data were analysed and emergent themes identified.

Results We identified three themes related to the ethical issues adolescents and parents anticipated with FI programme participation. First, FI programmes may variably change pressure and conflict in different families in ways that are not necessarily problematic. Second, the pressure to share FIs in some families and how FI payments are structured may lead to unfairness in some cases. Third, some adolescents may be likely to fabricate information in any circumstances, not simply because of FIs, but this could compromise the integrity of FI programmes relying on measures that cannot be externally verified.

Conclusions Many adolescents with type 1 diabetes and their parents see positive potential of FIs to help adolescents improve their self-management. However, ethical concerns about unfairness, potentially harmful increases in conflict/pressure and dishonesty should be addressed in the design and evaluation of FI programmes.

  • behaviour modification
  • clinical ethics
  • health economics
  • minors/parental consent

Data availability statement

Data are available upon request.

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